case study learning disability

Cookies on the NHS England website

We’ve put some small files called cookies on your device to make our site work.

We’d also like to use analytics cookies. These send information about how our site is used to a service called Google Analytics. We use this information to improve our site.

Let us know if this is OK. We’ll use a cookie to save your choice. You can  read more about our cookies before you choose.

Change my preferences I'm OK with analytics cookies

Case studies

We know that the transforming care programme is making a difference to people’s lives.

Our projects are:

• helping people live in homes and not hospitals
• building more services in the community
• improving people’s health, quality of care and quality of life.

Our case studies tell you how services are changing to make this happen and how real people are having their lives and care transformed. To find out more about our work you can follow us on Twitter via the account  @NHSAbility  or the hashtag  #CareTransformed .

If you have an example of where something is working really well in learning disability services that you would like us to share, please contact the team at:  [email protected] or  [email protected] .

Annual health checks

• Thurrock: health checks for people with a learning disability goes up by almost a third in one year
• Training GPs about health checks in Oxford

Care and treatment reviews

• Social enterprise is helping to make care and treatment reviews better
• Mark leaves hospital and moves back home, thanks to new online tool
• New ways of supporting children and young people to stay at home
• “Being an expert by experience has made me feel differently about my own learning disability”
• The Opportunity Café

Transforming care

• Improving health – Andrew’s story

Moving out of hospital

• Martin’s story – Martin shows us his new home in Lincolnshire
• Closing the inpatient unit – working together in Lincolnshire
• Kevin’s story: The sky’s the limit’

Reasonable adjustments

• Learning Disability week – Nursing case studies
• Creating the right environment for people with a learning disability to have their COVID vaccine

Stopping over-medication of people (STOMP)

• Stopping over-medication: Ricky and Andy’s story
• Helping people get the right medicines in Bury
• Helping Andrew to stop taking the wrong medicines in Hertfordshire
• Helping Andrew to stop taking the wrong medicines in Hertfordshire (in easy read)

Services for children and young people

• Early intervention service is supporting families when and where they need it
• Christina uses a personal health budget to get the best care
• Personal health budget is helping James live at home
• Extra support to keep children and young people out of hospital

Personalisation and choice

• Katy and Jackie’s story
• Thomas and David’s story

Support in the community

• A place to go for people in crisis: Durham

Case studies from other organisations

• Affinity Trust: Meet Ruth
• Arden Transforming Care Partnership and HOLD (Home ownership for people with long-term disabilities) in the Midlands
• Clare’s story: Turning Point
• Johnathan’s story
• Pete and Michelle’s story
• A message to employers
• Sharing lives, improving lives
• Benefits of working for NHS England – Alana’s story
• Changing Care in Cumbria and the North East
• Peter’s story: Future directions
• Case studies from Building the Right Support: one year on, 8 November 2016
• Empowerment films by the Local Government Association
• NHS 111: an inclusive service
• Personal health budgets for people with a learning disability
• Digital stories by Patient Voices

• Armenia response
• Gaza response

• High contrast
• Press centre

Search UNICEF

Case studies on disability and inclusion.

To document UNICEF’s work on disability and inclusion in Europe and Central Asia region, UNICEF Regional Office for Europe and Central Asia has developed a set of five case studies.

UNICEF takes a comprehensive approach to inclusion, working to ensure that all children have access to vital services and opportunities. When UNICEF speaks about “inclusion” this encompasses children with and without disabilities, marginalized and vulnerable children, and children from minority and hard-to-reach groups.

The case studies have a specific focus on children with disabilities and their families. However, many of the highlighted initiatives are designed for broad inclusion and benefit all children. In particular, this case study, covers such topics as: Inclusive Preschool, Assistive Technologies (AT), Early Childhood intervention (ECI), Deinstitutionalisation (DI).

Case studies

Case study 1: “Open source AAC in the ECA Region”

Files available for download (1).

Case study 2: “Inclusive Preschool in Bulgaria”

Case study 3: “Assistive technology in Armenia"

Case study 4: “Early childhood intervention in the ECA region”

Case study 5: “Deinstitutionalization in the ECA region”

Coercive Control

Case study 2: Emma

Download the whole case study as a PDF file (509KB)

Emma is a white British woman with a learning disability who is in her early 30s. She lives in a rented accommodation provided by a housing association, but is not currently receiving any social care support.

Emma’s situation has been brought to the attention of social care by the police, who reported a safeguarding concern about Emma’s ex-partner, Darren. Emma has tried to break up with Darren numerous times, but he always ends up living back in her flat with her. His behaviour is putting her tenancy at risk.

This case study concerns issues around supporting people who have a learning disability and are experiencing domestic abuse; financial abuse; and using threats to coerce someone back into a relationship.

When you have looked at the materials for the case study and considered these topics, you can use the critical reflection tool and the action planning tool to consider your own practice.

Case details

Download the case details as a PDF file (550KB)

Emma is 32. She is recorded as having a learning disability and attended a “special school” but does not currently receive any social care services. She lives in rented accommodation provided through a housing association.

Emma is known to the police due to repeated reports by her neighbours. Incidents have involved noise, intimidation of neighbours by visitors, fights between groups of young men and a complaint by Emma that her ex-partner Darren had locked her in the bathroom.

Emma and Darren had been together for five years. Darren moved into Emma’s flat very quickly after they started their relationship, offering to take care of the bills and shopping using a joint account. He said that because of her learning disability she shouldn’t be in charge of the money. At first Emma had enjoyed having a boyfriend and had felt ‘normal’ but he had soon started to just use her flat as he wanted and tell her what to do ‘as if she was stupid’. Darren has taken out a loan in her name and she is receiving letters related to repayments which she can’t afford. Emma used to be really close to her mum who lives nearby, but hasn’t seen her in a while.

The housing association sent Emma a letter saying that she will be evicted if there are any other incidents of her visitors causing distress to other tenants. After the housing association letter Emma ended the relationship. Emma calls herself an idiot for letting him into her life in the first place.

Since the breakup Darren frequently turns up at her flat, banging on the door, shouting and threatening her. Darren is texting her constantly and has threatened to send intimate photos of her to her Dad if she doesn’t let him move back into the flat. He says he knows she will want him back like she has done before. He always seems to know where she is for example, turning up when she goes to the food bank or at the bottom of her Mum’s road.

Following an incident where Darren broke down Emma’s front door the police have raised an adult safeguarding concern. The referral states that Darren is unemployed and does not receive JSA as he failed to actively apply for work. He has two previous offences for possession of marijuana and for theft of alcohol. The referral states that Emma does not want to give evidence to support police action against Darren as she is scared of what he might do to her. She consented to a safeguarding referral being made.

How would you make safe enquiry with Emma?

Who will meet with her?

How will you contact her to arrange the meeting?

In this section are two downloadable PDFs – one is a partly completed assessment form related to this case study, and another is an example of what a completed form could look like.

Suggested exercise

Download the partly completed assessment as a PDF file (494KB)

Download the completed assessment as a PDF file (550KB)

Use the partly completed assessment form:

• What actions would you discuss with Emma to ensure her immediate and longer term safety?
• What precautions would you need to take to avoid putting her at higher risk of harm?
• What is your analysis of the situation? Is coercive control occurring? What is the evidence of this?
• What is your conclusion?

Download the blank DASH_RIC as a Word .doc file (226KB)

The purpose of the DASH risk checklist is to give a consistent and simple tool for practitioners who work with adult victims of domestic abuse in order to help them identify those who are at high risk of harm and whose cases should be referred to a MARAC meeting in order to manage their risk. If you are concerned about risk to a child or children, Safe Lives recommend that you should make a referral to ensure that a full assessment of their safety and welfare is made.

There are two downloads on this page.

One shows a blank DASH risk checklist, with quick start guidance from Safe Lives. The key point is to remember that your professional judgement is key in making a decision about risk; a tool can help, but the score it comes out with is not definitive.

This is especially relevant when working with people with care and support needs, for whom some of the questions may not be relevant.

Download the case study DASH-RIC as a PDF file (211KB)

The other shows an example of a completed DASH relating to this case study, for you to critique and appraise.

Suggested exercise:

• Read the case details and full assessment document for this case study.
• Using the information contained, fill out a blank DASH risk assessment tool.
• Discuss how you found it; did you have all the required information? Would you be able to get all the required information in practice? Would you make a referral to MARAC?

This section picks out three main topics from the case study featured. For Emma’s case study, the topics include:

Using learning disability as a means of control

Financial abuse, threats to coerce the victim back into a relationship.

A selection of references, tools and further reading for each topic is below.

Katrina Pestka & Sarah Wendt (2014) conducted a small study of women with learning disabilities experiencing domestic violence in Australia and ‘found the women in the study had all experienced rejection in their childhoods and sought a sense of belonging in adult intimate relationships, even if they were abusive, and that the women’s low social status increased their vulnerability’. They conclude that ‘women with learning disabilities settle with or accept abuse in their lives to gain social value that has often been missing throughout their life course’.

Other research evidence, including Walter-Brice et al (2012) and McCarthy et al (2015), highlights the severe and sometimes sadistic nature of the abuse of women with learning disabilities, the likelihood of the abuse continuing after the relationship has ended, and the minimal responses of police and social services. A comparison of research available and emerging themes is summarised here:

http://sscr.nihr.ac.uk/PDF/AdultSafeguarding030314/MichelleMcCarthy.pdf

The full research paper reference is available open access (see references, below)

This video features women talking about their experiences and the help that was available to them, with advice from professionals and specialist services.

Don’t Put Up With It! Domestic Violence and women with disabilities (15:26 mins) Tizard. University of Kent

Having trouble with the embedded player? View the video directly here: https://www.youtube.com/watch?v=qV6vLyaqOgI

Tool 1, below outlines a structure for group reflection using the video above .

‘This coercive and controlling behaviour can leave women with no money for basic essentials such as food and clothing. It can leave them without access to their own bank accounts, with no access to any independent income and with debts that have been built up by abusive partners set against their names.’   (Howard and Skipp, 2015: 1)

‘It’s hard to do anything without money. You can’t even get on the bus without cash. So I had no chance to leave or even get help.’   (Survivor, Howard and Skipp, 2015: 40)

Marilyn Howard and Amy Skipp’s research into women’s experience of financial abuse is available here:

Howard and Skipp, Unequal, Trapped and Controlled

Social workers need to recognise financial abuse as a barrier to leaving and be knowledgeable about the role of housing agencies in responding to people with care and support needs fleeing coercive and controlling relationships. Liaison with housing agencies regarding tenancy violations which are the partner’s fault may be required.

There are Sanctuary Schemes for households at risk of domestic violence – you can download a practice guide for agencies here : Sanctuary schemes for households at risk of domestic violence: guide for agencies

Such threats can include revenge porn, homicide or suicide threats, stalking and online abuse as a way of coercing the victim back into a controlling abusive relationship. A report from Women’s Aid details the reality of online abuse, harassment and stalking.

Women’s Aid, Virtual world, real fear

Tool 2 outlines practice guidance for supporting people at risk of ‘revenge porn’.

• Tool 1: Design a ‘learning together’ event

Designing a learning event: Don’t put up with it!

This tool uses a video produced by the Tizard Centre and made with and for women with learning disabilities in the UK. The video describes what domestic abuse is, and explains how people who experience it can get help.

The tool prompts reflection on how the video could be used as a learning tool for people with learning disabilities, carers, and social care practitioners.

• Tool 2: Revenge porn –what you need to know

This leaflet has been produced by Revenge Porn Helpline and South West Grid for Learning. It is aimed at people who have experienced revenge porn, but is also useful for professionals.

Tool 1: Design a ‘learning together’ event

Download the tool as a PDF file

Watch the video in supervision, with peers, or in a team meeting:

*Don’t Put Up With It! Domestic Violence and women with disabilities (15:26 mins) Tizard. University of Kent

Discuss together how this video resource might be used as a learning tool:

Reflection on action:

Using feedback from the event, what other strategies might be used to protect people with learning disabilities and others vulnerable to being coerced into abusive & controlling relationships?

Individually

In your team

At organisational level

* Don’t Put Up With It! Domestic Violence and women with disabilities  Tizard. University of Kent, shown with permission of the author, Michelle McCarthy

Tool 2: Revenge porn – what you need to know

Download the tool as a PDF file (424KB)

• What revenge porn is
• Where it might be
• The law around revenge porn
• Reporting revenge porn – to the police and to online platforms
• What other action can be taken?
• Further support.

Howard M and Skipp A (2015) Unequal, trapped & controlled: Women’s experience of financial abuse and potential implications for Universal Credit . Women’s Aid and TUC.McCarthy M, Hunt S and Milne-Skillman K (2015) ‘ I know it was every week, but I can’t be sure if it was every day: domestic violence and women with learning disabilities’. Journal of Applied Research in Intellectual Disabilities. Available online: http://onlinelibrary.wiley.com/doi/10.1111/jar.12237/pdf

Walter-Brice A, Cox R, Priest H and Thompson F (2012) ‘What do women with learning disabilities say about their experiences of domestic abuse within the context of their intimate partner relationships?’  Disability and Society , 27, 4, 503-517.

• Equal opportunities
• Complaints procedure
• Terms and conditions
• Privacy policy
• Cookie policy
• Accessibility

John and College Studies: A Case Study in Accommodating Learning Disabilities

John has a learning disability which affects auditory processing. Like many students with invisible disabilities, such as learning and psychological impairments, he is sensitive to the attitudes and perceptions of fellow classmates and instructors regarding his need for a notetaker in class. He is reluctant to announce this need among his classmates, fearing perceptions of preferential treatment, invalid reasons, and negative stereotyping (e.g., that he is lazy or stupid).

Access Issue

John needed to obtain lecture notes as an accommodation. He was too embarrassed to make such a request of his classmates. Although the student disability resource center had provided paperwork and approval for monetary compensation for a notetaker, nearly two weeks had passed and still no classroom volunteers were identified.

Intervention from the student disability resources office included contact with the instructor who then made a general announcement in class about the need for a notetaker, noting that monetary compensation would be provided; if there were no volunteers, the disability resources office staff would recruit on campus for a paid notetaker enrolled in the class. It was also recommended that the instructor provide lecture outlines and the option for the student to tape record the lectures. Additional support was provided to the student through disability management counseling, which reinforced self-advocacy and learning skills.

This case shows how:

• The three-way coordination of the student, faculty, and office of disability services can effectively support the student who has concerns about what others might think and help him attain needed academic accommodations.
• The disability resources office may help a student develop self-advocacy and learning skills.

Disability as Diversity

A Case Studies Companion Guide

• © 2021
• Leslie Neal-Boylan 0 ,
• Lisa M. Meeks   ORCID: https://orcid.org/0000-0002-3647-3657 1

Mansfield Kaseman Health Clinic, Chevy Chase, Rockville, USA

You can also search for this editor in PubMed   Google Scholar

Department of Family Medicine, University of Michigan Medical School, Ann Arbor, USA

• The information is critically needed, as this is a first-of-its kind publication
• Case studies are connected to case law and OCR decisions for health science programs
• Applicable across healthcare professions

8376 Accesses

9 Altmetric

This is a preview of subscription content, log in via an institution to check access.

Access this book

• Available as EPUB and PDF
• Read on any device
• Instant download
• Own it forever
• Compact, lightweight edition
• Dispatched in 3 to 5 business days
• Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Other ways to access

Licence this eBook for your library

Institutional subscriptions

Table of contents (15 chapters)

Front matter, medical student cases, the student with a learning disability: clarissa connors, a medical student with undiagnosed adhd and a learning disability.

• Kristina H. Petersen, Stacy C. Jones, Lisa M. Meeks

The Student with a Physical Disability: Tammy Thomas, a Clinical Year Medical Student with Quadriplegia

• Christopher D. Connolly, Maya M. Hammoud, Charlotte H. O’Connor

The Student with a Sensory Disability: Conrad Barker, a Rising Third-Year Medical Student with Hearing Loss

• Michael S. Argenyi, Alicia Booth, Christine Low

The Student with a Psychological Disability: Rhonda Rapp, a Fourth-Year Medical Student with Depression and PTSD

• Lisa M. Meeks, Hilit F. Mechaber, Samantha Schroth, Rahael Gupta, Joseph F. Murray

The Student with a Chronic Health Condition: Hillary Hampton, a Second-Year Medical Student with Crohn’s Disease

• Nichole L. Taylor, Charlotte H. O’Connor

The Student with Cancer: Marc Fernandez, a Fourth-Year Medical Student with Cancer

• Nichole L. Taylor, Catherine Moore, Suzanne Hawks

Nursing Student Cases

The student with a learning disability: mee sook smith, a nursing student with a learning disability in an associate degree program.

• Leslie Neal-Boylan, Patricia Lussier-Duynstee, Christine Low

The Student with a Learning Disability: Maxwell Mason, a Nursing Student with a Learning Disability in a Baccalaureate Degree Program

• Patricia Lussier-Duynstee, Charlotte H. O’Connor, Leslie Neal-Boylan

The Student with a Physical Disability: Sam Stone, a Nursing Student with a Missing Limb

• Leslie Neal-Boylan, Patricia Lussier-Duynstee, Jan Serrantino-Cox

The Student with a Sensory Disability: Anna Howard, a Deaf Nursing Student

• Stacey M. Carroll, Carrie Morgan Eaton, Marie Lusk

The Student with a Psychological Disability: Melanie Mathews, a Nursing Student with Suicidal Ideation

• Leslie Neal-Boylan, Michelle D. Miller, Jan Serrantino-Cox

The Student with a Chronic Health Condition: Susan Nacht, a Nursing Student with Narcolepsy

• Sharron E. Guillett, Elizabeth Kane

Focused Topic Cases

The student using medical marijuana.

• Leslie Neal-Boylan, Charlotte H. O’Connor

The Student Who Brings an Animal to Class

• Patricia Lussier-Duynstee, Christine Low, Elisa P. Laird, Leslie Neal-Boylan

The Student Who Fails the Medical Board Exam

• Kristina H. Petersen, Lisa M. Meeks

Back Matter

• Case studies
• Disability services

About this book

Editors and affiliations.

Leslie Neal-Boylan

Lisa M. Meeks

About the editors

Leslie Neal-Boylan, PhD, APRN, CRRN, FAAN

Solomont School of Nursing

University of Massachusetts

Lowell, MA, USA

[email protected]

Lisa M. Meeks, PhD, MA

Department of Family Medicine

The University of Michigan Medical School

Ann Arbor, Michigan, USA

[email protected]

Bibliographic Information

Book Title : Disability as Diversity

Book Subtitle : A Case Studies Companion Guide

Editors : Leslie Neal-Boylan, Lisa M. Meeks

DOI : https://doi.org/10.1007/978-3-030-55886-4

Publisher : Springer Cham

eBook Packages : Medicine , Medicine (R0)

Copyright Information : The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2021

Softcover ISBN : 978-3-030-55885-7 Published: 01 November 2020

eBook ISBN : 978-3-030-55886-4 Published: 31 October 2020

Edition Number : 1

Number of Pages : XIV, 158

Number of Illustrations : 1 b/w illustrations, 1 illustrations in colour

Topics : Health Administration , General Practice / Family Medicine

• Publish with us

Policies and ethics

• Find a journal
• Track your research

Open Access is an initiative that aims to make scientific research freely available to all. To date our community has made over 100 million downloads. It’s based on principles of collaboration, unobstructed discovery, and, most importantly, scientific progression. As PhD students, we found it difficult to access the research we needed, so we decided to create a new Open Access publisher that levels the playing field for scientists across the world. How? By making research easy to access, and puts the academic needs of the researchers before the business interests of publishers.

We are a community of more than 103,000 authors and editors from 3,291 institutions spanning 160 countries, including Nobel Prize winners and some of the world’s most-cited researchers. Publishing on IntechOpen allows authors to earn citations and find new collaborators, meaning more people see your work not only from your own field of study, but from other related fields too.

Brief introduction to this section that descibes Open Access especially from an IntechOpen perspective

Want to get in touch? Contact our London head office or media team here

Our team is growing all the time, so we’re always on the lookout for smart people who want to help us reshape the world of scientific publishing.

Home > Books > Learning Disabilities - Neurological Bases, Clinical Features and Strategies of Intervention

The Child with Learning Difficulties and His Writing: A Study of Case

Submitted: 30 May 2019 Reviewed: 16 August 2019 Published: 20 November 2019

DOI: 10.5772/intechopen.89194

Cite this chapter

There are two ways to cite this chapter:

From the Edited Volume

Learning Disabilities - Neurological Bases, Clinical Features and Strategies of Intervention

Edited by Sandro Misciagna

To purchase hard copies of this book, please contact the representative in India: CBS Publishers & Distributors Pvt. Ltd. www.cbspd.com | [email protected]

Chapter metrics overview

1,164 Chapter Downloads

Impact of this chapter

Total Chapter Downloads on intechopen.com

Total Chapter Views on intechopen.com

The purpose of this paper is to present one child with learning difficulties writing process in multigrade rural elementary school in México. It presents Alejandro’s case. This boy lives in a rural area. He shows special educational needs about learning. He never had specialized attention because he lives in a marginalized rural area. He was integrated into regular school, but he faced some learning difficulties. He was always considered as a student who did not learn. He has coursed 2 years of preschool and 1 year of elementary school. Therefore, this text describes how child writes a list of words with and without image as support. Analysis consists to identify the child’s conceptualizations about writing, his ways of approaching, and difficulties or mistakes he makes. The results show that Alejandro identifies letters and number by using pseudo-letters and conventional letter. These letters are in an unconventional position. There is no relationship grapheme and phoneme yet, and he uses different writing rules. We consider his mistakes as indicators of the learning process.

• writing difficulties
• learning difficulties
• writing learning
• writing process
• special education

Author Information

Edgardo domitilo gerardo morales *.

• Faculty of Philosophy and Letters, National Autonomous University of Mexico, México City, México

*Address all correspondence to: [email protected]

1. Introduction

One of the purposes of Mexican education system is that students acquire conventional writing during first grades in elementary school [ 1 ]. This purpose consists of students to understand the alphabetical code, its meaning, and functionality. In this way, they can integrate into a discursive community.

The elementary school teacher teaches a heterogeneous group of children [ 1 ,  2 ]. Some students show different acquisition levels of the writing. This is due to literacy environment that the family and society provide. Thus, some children have had great opportunities to interact with reading and writing practices than others. Therefore, some students do not learn the alphabetical principle of writing at the end of the scholar year. They show characteristics of initial or intermediate acquisition level of the writing. In this way, it is difficult for children to acquire writing at the same time, at the term indicated by educational system or teachers.

In addition, there may be children with learning difficulties in the classroom. Department of Special Education teaches some children. Students with special educational needs show more difficulties to learn than their classmates [ 3 ]. They require more resources to achieve the educational objectives. These authors point out that special educational needs are relative. These needs arise between students’ personal characteristics and their environment. Therefore, any child may have special educational needs, even if he/she does not have any physical disability. However, some students with learning difficulties do not have a complete assessment about their special educational needs. On the one hand, their school is far from urban areas; on the other hand, there are not enough teachers of special education for every school. In consequence, school teachers do not know their students’ educational needs and teach in the same way. Thereby, students with learning difficulties do not have the necessary support in the classroom.

Learning difficulties of writing may be identified easily. Children with special educational needs do not learn the alphabetical principle of writing easily; that is, they do not relate phoneme with grapheme. Therefore, children show their conceptualizations about writing in different ways. Sometimes, teachers censor their students’ written productions because they do not write in a conventional way. Children with special educational needs are stigmatized in the classroom. They are considered as less favored. At the end of the scholar year, children do not pass.

Therefore, the purpose of this paper is to present one child with special educational needs writing process in a Mexican multigrade rural school. This text describes how the child writes a list of words with and without image as support. Analysis consists to identify the child’s conceptualizations about writing [ 4 ], his ways of approaching, and difficulties or mistakes he makes. These mistakes are the indicators of learning process [ 5 ].

This paper presents Alejandro’s case. This boy lives in a rural area. He shows special educational needs about learning. He never had specialized attention because he lives in a marginalized rural area. He was integrated into regular school, but he faced some learning difficulties. He was always considered as a student who does not learn. Therefore, this text describes Alejandro’s writing, what he does after 2 years of preschool and 1 year of elementary school.

2. Children with learning difficulties and their diagnosis

According to the National Institute for the Evaluation of Education [ 6 ], Mexican education system provides basic education (preschool, elementary, and secondary school) for students with special educational needs. There are two types of special attention: Center of Multiple Attention (CAM, in Spanish) and Units of Service and Support to Regular Education (USAER, in Spanish). In the first one, children with special educational needs go to this Center. These children receive attention according to basic education and their educational needs. In the second, specialized teachers on special education go to school and provide support to students. These teachers provide information to school teachers too. In this way, there is educational equity and inclusion in Mexican school [ 7 ].

Physical appearance : Teacher describes the child’s physical characteristics. These features indicate the type of food the student eats, care his or her person, the parents’ attention, among other elements.

Behavior observed during the assessment : In this section, the teacher should record the conditions in which the assessment was carried out: child’s attitude, behavior, and interest.

Child’s development history : This section presents conditions in which pregnancy developed, physical development (ages in which child held his/her head, sat, crawled, walked, etc.), language development (verbal response to sounds and voices, age in which said his/her first words and phrases, etc.), family (characteristics of their family and social environment, frequent activities, etc.), hetero-family history (vision, hearing, etc.), medical history (health conditions, diseases, etc.), and scholar history (age at which he/she started school, type of school, difficulties, etc.).

Present condition : In this, there are four aspects:

It refers to student’s general aspects: intellectual area (information processing, attention, memory, understanding, etc.), motor development area (functional skills to move, take objects, position of his/her body, etc.), communicative-linguistic area (phonological, semantic, syntactic and pragmatic levels), adaptation and social interaction area (the child’s skills to initiate or maintain relationships with others), and emotional area (the way of perceiving the world and people). In each one, it mentions the instruments he suggests, although there is not enough information about them [ 3 ].

The second aspect is the curricular competence level. Teacher identifies what the student is capable of doing in relation to established purposes and contents by official curriculum.

The third aspect is about the learning style and motivation to learn. It presents physical-environmental conditions where the child works, their interests, level attention, strategies to solve a task, and the incentives he receives.

The fourth aspect is information about the student’s environment: factors of the school, family, and social context that influence the child’s learning.

Psycho-pedagogical assessment allows to identify children’s general educational needs. In this way, the school teacher could have information about the students’ difficulties. However, it is a general assessment. It contains several aspects and does not go deeper into one.

Therefore, this paper does not propose a new assessment. It consists of presenting one child’s writing difficulties, his ways of conceptualizing writing, and some mistakes he gets to make.

3. Students with learning difficulties and their scholar integration

Since 1993, Mexican system education has tried to offer special education services to students with special educational needs in basic education [ 8 ]. The first step was to promote the integration of these children in regular education classrooms. However, only insertion of the student in the school was achieved. Therefore, the system of education searched for mechanisms to provide advice to teacher. In this way, student with learning difficulties can be attended at the same time in the classroom [ 8 ].

Educational integration has been directly associated with attention of students with learning difficulties, with or without physical disabilities [ 8 ]. However, this process implies a change in the school. For this, it is necessary to provide information and to create awareness to the educational community, permanent updating of teachers, joint work between teacher, family, and specialized teachers.

At present, Mexican education system looks at educational integration as process in which every student with learning difficulties is supported individually [ 9 ]. Adapting the curriculum to the child is the purpose of educational integration.

Curricular adequacy is one of the actions to support students with learning difficulties [ 10 , 11 ]. This is an individualized curriculum proposal. Its purpose is to attend the students’ special educational needs [ 3 ]. At present, Mexican education system indicates that there should be a curricular flexibility to promote learning processes. However, it is important to consider what the child knows about particular knowledge.

Regarding the subject of the acquisition of written language, it is necessary to know how the children build their knowledge about written. It is not possible to make a curricular adequacy if teachers do not have enough information about their students. However, children are considered as knowledge builders. Therefore, there are learning difficulties at the process.

4. Alejandro’s case

This section presents Alejandro’s personal information. We met him when we visited to his school for other research purposes. We focused on him because the boy was silent in class. He was always in a corner of the work table and did not do the activities. For this, we talked with his teacher and his mother to know more about him.

Alejandro is a student of an elementary multigrade rural school. He was 7 years old at the time of the study. He was in the second grade of the elementary school. His school is located in the region of the “Great Mountains” of the state of Veracruz, Mexico. It is a rural area, marginalized. To get to this town from the municipal head, it is necessary to take a rural taxi for half an hour. Then, you have to walk on a dirt road for approximately 50 min.

Alejandro’s family is integrated by six people. He is the third of the four sons. He lives with his parents. His house is made of wood. His father works in the field: farming of corn, beans, and raising of sheep. His mother is a housewife and also works in the field. They have a low economic income. Therefore, they receive a scholarship. One of his older brothers also showed learning difficulties at school. His mother says both children have a learning problem. But, they do not have any money for attending their sons’ learning difficulties. In addition, there are no special institutes near their house.

The boy has always shown learning difficulties. He went to preschool for 2 years. However, he did not develop the necessary skills at this level. At classes, this child was silent, without speaking. Preschool teachers believed that he was mute. Nevertheless, at scholar recess, he talked with his classmates. Alejandro was slow to communicate with words in the classroom.

When he started elementary school, Alejandro continued to show learning difficulties. At classes, he was silent too. He just watched what his classmates did. He did not do anything in the class. He took his notebook out of his backpack and just made some lines. Occasionally, he talked with his classmates. When the teacher asked him something, Alejandro did not answer. He looked down and did not answer. He just ducked his head and stayed for several minutes.

When Alejandro was in second grade, he did different activities than his classmates. His teacher drew some drawings for him and he painted these drawings. Other occasions, the teacher wrote some letters for him to paint. The child did every exercise during several hours. He did not finish his exercises quickly. Sometimes he painted some drawings during 2 h.

Although Alejandro requires specialized attention, he has not received it. He has not had a full psycho-pedagogical assessment at school by specialized teachers. His school does not have these teachers. Also, the child was not submitted to neurological structural examination or neurophysiological studies to exclude an organic origin of his learning difficulties. His parents do not have enough financial resources to do this type of study for him. In addition, one specialized institution that can do this type of study for free is in Mexico City. It is so far from child’s house. It would be expensive for the child’s parents. Therefore, he is only attended as a regular school student.

For this reason, this paper is interested in the boy’s writing process. This is because Alejandro coursed 2 years of preschool and 1 year of elementary school; however, he does not show a conventional writing yet. In this way, it is interesting to analyze his conceptualizations about writing and difficulties he experiences.

5. Methodology

The purpose of this paper is to know the child’s ways to approach writing spontaneously and his knowledge about the writing system. For this, the author used a clinical interview. He took into account the research interview guide “Analysis of Disturbances in the Learning Process of Reading and Writing” [ 12 ].

The clinical interview was conducted individually. We explored four points, but we only present two in this text: to write words and to write for image.

Interviewer took the child to the library room at school. There were no other students. First, the interviewer gave the child a sheet and asked to write his name. Alejandro wrote his name during long time. Interviewer only asked what it says there. He answered his name: “Alejandro.” Next, the interviewer asked the child to write some letters and numbers he knew. Alejandro wrote them. The interviewer asked about every letter and number. The child answered “letter” or “number,” and its name.

To write words : The interviewer asked the child to write a group of words from the same semantic field in Spanish (because Alejandro is from Mexico) and one sentence. Order of words was from highest to lowest number of syllables. In this case, interviewer used semantic field of animals. Therefore, he used following words: GATO (cat), MARIPOSA (butterfly), CABALLO (horse), PERRO (dog), and PEZ (fish). The sentence was: EL GATO BEBE LECHE (The cat drinks milk). The interviewer questioned every written word. He asked the child to show with his finger how he says in every written production.

To write for image : This task was divided into two parts. The first analyzed the size and second analyzed the number.

Interviewer used the following image cards: horse-bird and giraffe-worm ( Figure 1 ). Every pair of cards represents a large animal and a small animal.

Cards with large and small animals.

The purpose of this first task was to explore how the child writes when he looks at two images of animals with different size. The animal names have three syllables in Spanish: CA-BA-LLO (horse), PA-JA-RO (bird), etc. In this way, we can see how the child writes.

The interviewer used the following pair of cards for second task ( Figure 2 ).

Cards for singular and plural.

First card shows one animal (singular) and the second shows some animals (plural). In this way, we search to explore how the child produces his writings when he observes one or more objects, if there are similarities or differences to write.

The interviewer asked what was in every card. Next, he asked the child to write something. Alejandro wrote something in every picture. Afterward, the interviewer asked the child to read every word that he wrote. Child pointed with his finger what he wrote.

After, the interview was transcribed for analysis. We read the transcription. The author analyzed every written production. He identified the child’s conceptualizations about writing. He compared the written production and what the child said. In this way, the analysis did not only consist to identify the level of writing development. This text describes the child’s writing, the ways in which he conceptualizes the writing, the difficulties he experienced to write, and his interpretations about writing.

6. Alejandro’s writing

This section describes Alejandro’s writing process. As we already mentioned, Alejandro is 7 years old and he studies in the second grade of the elementary school. His teacher says the child should have a conventional writing, because he has already coursed 1 year of elementary school, but it is not like that. Most of his classmates write a conventional way, but he does not.

We organized this section in three parts. The first part presents how Alejandro wrote his name and how he identifies letters and numbers; the second part refers to the writing of words; and the third part is writing for picture.

6.1 Alejandro writes his name and some letters and numbers

The first part of the task consisted of Alejandro writing his name and some letters and numbers he knows. His name was requested for two reasons. The first reason is to identify the sheet, because the interviewer interviewed other children in the same school. Also, it was necessary to identify every written productions of the group of students. The second reason was to observe the way he wrote his name and how he identified letters and numbers.

The interviewer asked the child to write his name at the top of the sheet. When the interviewer said the instructions, Alejandro was thoughtful during a long time. He was not pressed or interrupted. He did not do anything for several seconds. The child looked at the sheet and looked at everywhere. After time, he took the pencil and wrote the following on the sheet ( Figure 3 ).

Alejandro’s name.

The interviewer looked at Alejandro’s writing. He asked if something was lacking. The interviewer was sure that Alejandro knew his name and his writing was not complete. However, Alejandro was thoughtful, and looked at the sheet for a long time. The interviewer asked if his name was already complete. The child answered “no.” The interviewer asked the child if he remembered his name. Alejandro denied with his head. So, they continued with another task.

Alejandro has built the notion of his name. We believe that he has had some opportunities to write his name. Perhaps, his teacher has asked him to write his name on his notebooks, as part of scholar work in the classroom. We observed that Alejandro used letters with conventional sound value. This is because he wrote three initial letters of his name: ALJ (Alejandro). The first two letters correspond to the beginning of his name. Then, he omits “E” (ALE-), and writes “J” (ALJ). However, Alejandro mentions that he does not remember the others. This may show that he has memorized his name, but at that moment he failed to remember the others, or, these letters are what he remembers.

Subsequently, the interviewer asked Alejandro to write some letters and numbers he knew. The sequence was: a letter, a number, a letter, another letter, and number. In every Alejandro’ writing, the interviewer asked the child what he wrote. In this way, Alejandro wrote the following ( Figure 4 ).

Letters and numbers written by Alejandro.

For this task, Alejandro wrote for a long time. He did not hurry to write. He looked at sheet and wrote. The child looked at the interviewer, looked at the sheet again and after a few seconds he wrote. The interviewer asked about every letter or number.

We can observe that Alejandro differentiates between letter and number. He wrote correctly in every indication. That is, when the interviewer asked him to write a letter or number, he did so, respectively. In this way, Alejandro knows what he needs to write a word and what is not, what is for reading and what is not.

Also, we can observe that the child shows a limited repertoire of letters. He did not write consonants. He used only vowels: A (capital and lower) and E (lower). It shows us that he differentiates between capital and lower letter. Also, he identifies what vowels and letters are because the child answered which they were when the interviewer asked about them.

6.2 Writing words from the same semantic field

Asking the child to write words spontaneously is a way to know what he knows or has built about the writing system [ 12 ]. Although we know Alejandro presents learning difficulties and has not consolidated a conventional writing, it is necessary to ask him to write some words. This is for observing and analyzing what he is capable of writing, what knowledge he has built, as well as the difficulties he experiences.

The next picture presents what Alejandro wrote ( Figure 5 ). We wrote the conventional form in Spanish next to every word. We wrote these words in English in the parentheses too.

List of words written by Alejandro.

At the beginning of the interview, Alejandro did not want to do the task. He was silent for several seconds. He did not write anything. He looked at the sheet and the window. The interviewer insisted several times and suspended the recording to encourage the child to write. Alejandro mentioned he could not write, because he did not know the letters and so he would not do it. However, the interviewer insisted him. After several minutes, Alejandro took the pencil and started to write.

Alejandro wrote every word for 1 or 2 min. He required more seconds or minutes sometimes. He looked at the sheet and his around. He was in silence and looking at the sheet other times. We identified that he needs time to write. This shows that he feels insecure and does not know something for writing. He feels insecure because he was afraid of being wrong and that he was punished by the interviewer for it. It may be that in class he is penalized when he makes a mistake. There is ignorance because he does not know some letters, and he has a low repertoire of the writing system. Thus, Alejandro needs to think about writing and look for representing it. Therefore, this is why the child needs more time to write.

We identified that the child does not establish a phoneme-grapheme relationship. He only shows with his finger from left to right when he read every word. He does not establish a relationship with the letters he used. In each word, there is no correspondence with the number of letters. The child also does not establish a constant because there is variation in number and variety of letters sometimes.

Alejandro used letters unrelated to the conventional writing of the words. For example, when he wrote GATO (cat), Alejandro used the following letters: inpnAS. It is possible to identify that no letter corresponds to the word. Perhaps, Alejandro wrote those letters because they are recognized or remembered by him.

Alejandro shows a limited repertoire of conventional letters. This is observed when he uses four vowels: A, E, I, O. The child used these vowels less frequently. There is one vowel in every word at least. When Alejandro wrote PEZ (fish), he used two vowels. We observed that he writes these vowels at the beginning or end of the word. However, we do not know why he places them that way. Maybe this is a differentiating principle by him.

There is qualitative and quantitative differentiation in Alejandro’s writing. That is, he did not write any words in the same way. All the words written by him are different. Every word has different number and variety of letters. When two words contain the same number of letter, they contain different letters.

When Alejandro wrote MARIPOSA (butterfly), he used five letters. The number of letters is less than what he used for GATO (cat). Maybe he wrote that because the interviewer said “butterfly is a small animal.” This is because the cat is bigger than the butterfly. Therefore, it may be possible that he used lesser letters for butterfly.

In Spanish, PERRO (dog) contains five letters. Alejandro wrote five letters. In this case, Alejandro’s writing corresponds to the necessary number of letters. However, it seems that there is no writing rules for him. This is for two reasons: first, because there is no correspondence with the animal size. Horse is larger than dog and Alejandro required lesser letters for horse than for dog. Second, CABALLO (horse) is composed by three syllables and PERRO (dog) by two. Alejandro used more letters to represent two syllables. In addition, it is observed that there is a pseudo-letter. It looks like an inverted F, as well as D and B, horizontally.

When Alejandro wrote PEZ (fish), the interviewer first asked how many letters he needed to write that word. The child did not answer. Interviewer asked for this again and student said that he did not know. Then, interviewer said to write PEZ (fish). For several minutes, Alejandro just looked the sheet and did not say anything. The interviewer questioned several times, but he did not answer. After several minutes, Alejandro wrote: E. The interviewer asked the child if he has finished. He denied with his head. After 1 min, he started to write. We observed that his writing contains six letters. Capital letters are predominated.

Alejandro used inverted letters in three words. They may be considered as pseudo-letters. However, if we observe carefully they are similar to conventional letters. The child has written them in different positions: inverted.

May be there is a writing rule by Alejandro. His words have a minimum of four letters and a maximum of six letters. This rule has been established by him. There is no relation to the length of orality or the object it represents.

We can identify that Alejandro shows a primitive writing [ 4 ]. He is still in writing system learning process. The phoneticization process is not present yet. The child has not achieved this level yet. He only uses letters without a conventional sound value. There is no correspondence to phoneme-grapheme, and he uses pseudo-letters sometimes.

6.3 To write for image

Write for image allows us to know what happens when the child writes something in front of an image [ 12 ]. It is identified if there is the same rules used by the child, number of letters, or if there is any change when he writes a new word. It may happen that the length of the words is related to the size of the image or the number of objects presented. In this way, we can identify the child’s knowledge and difficulties when he writes some words.

6.3.1 The image size variable

The first task is about observing how the child writes when he is in front of two different sized images. That is, we want to identify if the image size influences on his writings. Therefore, two pairs of cards were presented to Alejandro. Every pair of cards contained two animals, one small and one large. The interviewer asked Alejandro to write the name on each one ( Figure 6 ).

Horse and bird writing.

Based on the writing produced by Alejandro, we mentioned the following:

Alejandro delimits his space to write. When he wrote for first pair of words, the child drew a wide rectangle and he made an oval and several squares for the second pair of words. The child wrote some letters to fill those drawn spaces. It seems that Alejandro’s rule is to fill the space and not only represent the word.

When Alejandro writes the words, we identified that he presents difficulty in the conventional directionality of writing. He wrote most of words from left to right (conventional directionality), but he wrote some words from right to left (no conventional). For example, the child started to write the second word on the left. He wrote seven letters. He looked at the sheet for some seconds. After, he continued to write other letters on the right. He wrote and completed the space he had left, from right to left.

Alejandro shows two ways to write: left–right (conventional) and right–left (no conventional). When he wrote the last word, the child wrote one letter under another. There was no limited space on the sheet. Alejandro wrote it there. The child has not learned the writing directionality.

When we compared Alejandro’s writings, we identified that the number of letters used by him does not correspond to the image size. Although the images were present and he looked them when he wrote, the child took into account other rules to write. The six names of animals had three syllables in Spanish and Alejandro used nine letters for CABALLO (horse) and eleven for PÁJARO (bird). The letters used by him are similar to the conventional ones. However, these are in different positions. There are no phonetic correspondences with the words. The child shows a primitive writing. Alejandro has not started the level of relation between phoneme and grapheme yet. We can believe that the boy wrote some letters to cover the space on the sheet. Alejandro takes into account the card size instead of the image size.

After writing a list of words, the interviewer asked Alejandro to read and point out every word he wrote. The purpose of this task is to observe how the child relates his writing to the sound length of the word. When Alejandro read CABALLO (horse), he pointed out as follows ( Figure 7 ).

Alejandro reads “caballo” (horse).

Alejandro reads every word and points out what he reads. In this way, he justifies what he has written. In the previous example, Alejandro reads the first syllable and points out the first letter, second syllable with the second letter. At this moment, he gets in conflict when he tries to read the third syllable. It would correspond to the third letter. However, “there are more letters than he needs.” When he reads the word, he shows the beginning of phoneticization: relation between one syllable with one letter. This is the syllabic writing principle [ 4 ]. Nevertheless, he has written more letters. Therefore, Alejandro says “o” in the other letters. In this way, we can point out that Alejandro justifies every letters and there is a correspondence between what he reads and what he writes.

When Alejandro reads the second word, the child pointed out as follows ( Figure 8 ).

Alejandro reads “pájaro” (bird).

Alejandro makes a different correspondence syllable-letter than the first word. Although his writing was in two ways, his reading is only one direction: from left to right. The first syllable is related to first three letters he wrote. The second syllable is related to the fourth letter. But, he faces the same problem as in the previous word: “there are many letters.” So he justifies the other letters as follows. He reads the third syllable in relation to the sixth and seventh letter. And, reads “o” for the other letters.

When interviewer showed the next pair of cards, Alejandro wrote as following ( Figure 9 ).

Giraffe and worm writing by Alejandro.

When the interviewer shows the pair of cards to Alejandro, the child said “It’s a zebra.” So, the interviewer said “It’s a giraffe and it’s a worm” and pointed out every card. The interviewer asked Alejandro to write the name of every animal. First, the child draws a rectangle across the width of the sheet. Next, he started to write on the left side inside the rectangle. He said the first syllable “JI” while writing the first letter. After, he said “ra,” he wrote a hyphen. Then, he said “e” and wrote another letter. At that moment, he looked at the sheet and filled the space he left with some letters ( Figure 10 ).

Giraffe writing.

Alejandro shows different rules of writing. These rules are not the same as previous. He delimited the space to write and filled the space with some letters. The child tries to relate the syllable with one letter, but he writes others. There is a limited repertoire of letters too. In this case, it seems that he used the same letters: C capital and lower letter, A capital and lower letter, and O. We believe that he uses hyphens to separate every letter. However, when he wrote the first hyphen, it reads the second syllable. We do not know why he reads there. Alejandro had tried to use conventional letters. He uses signs without sound value. In addition, there is no relation phoneme and grapheme.

When Alejandro wrote GUSANO (worm), he drew a rectangle and divided it into three small squares. Then, he drew other squares below the previous ones. After, he began to write some letters inside the squares, as seen in the following picture ( Figure 11 ).

Worm writing.

Alejandro used other rules to write. They are different than the previous. Alejandro has written one or two letters into every box. At the end, he writes some letters under the last box. There is no correspondence between what he reads and writes. There are also no fixed rules of writing for him. Rather, it is intuited that he draws the boxes to delimit his space to write.

6.3.2 Singular and plural writing

The next task consists to write singular and plural. For this, the interviewer showed Alejandro the following images ( Figure 12 ).

Cards with one cat and four cats.

Alejandro drew an oval for first card. This oval is on the left half of the sheet. He wrote the following ( Figure 13 ).

Alejandro writes GATO (cat).

Next, the interviewer asked Alejandro to write for the second card, in plural. For this, Alejandro draws another oval from the middle of the sheet, on the right side. The child did not do anything for 1 h 30 min. After this time, he wrote some different letters inside the oval ( Figure 14 ). He wrote from right to left (unconventional direction).

Alejandro writes GATOS (cats).

Alejandro wrote in the opposite conventional direction: from right to left. He tried to cover the delimited space by him. His letters are similar to the conventional ones. Also, there are differences between the first and the second word. He used lesser letters for first word than the second. That is, there are lesser letters for singular and more letters for plural. Perhaps, the child took into account the number of objects in the card.

The writing directionality may have been influenced by the image of the animals: cats look at the left side. Alejandro could have thought he was going to write from right to left, as well as images of the cards. Therefore, it is necessary to research how he writes when objects look at the right side. In this way, we can know if this influences the directionality of Alejandro’s writing.

With the next pair of images ( Figure 15 ), the interviewer asked Alejandro to write CONEJO (rabbit) and CONEJOS (rabbits).

Cards with one rabbit and three rabbits.

Alejandro draws a rectangle in the middle of the sheet for the first card (rabbit). He said “cone” (rab-) and wrote the first letter on the left of the sheet. Then, he said “jo” (bit) and wrote the second letter. He said “jo” again and wrote the third letter. He was thoughtful for some seconds. He started to write other letters. His writing is as follows ( Figure 16 ).

Alejandro writes CONEJO (rabbit).

At the beginning, Alejandro tries to relate the syllables of the word with first two letters. However, he justifies the other letters when he read the word. There is no exact correspondence between the syllable and the letter. As well as his writing is to fill the space he delimited.

Alejandro takes into account other rules for plural writing. He drew a rectangle across the width of the sheet. Starting on the left, he said “CO” and wrote one letter. Then, he said “NE” and drew a vertical line. After, he said “JO” and wrote other letters. His writing is as follows ( Figure 17 ).

Alejandro writes CONEJOS (rabbits).

Alejandro writes both words differently. He reads CONEJO (rabbit) for first word and CONEJOS (rabbits) for the second. Both words are different from each other. But, he wrote them with different rules. This is confusing for us because there are vertical lines between every two letters in the second word. We believe that the child tried to represent every object, although he did not explain it.

In summary, Alejandro shows different writings. He used pseudo-letters and conventional letter. These letters are in unconventional positions. There is no relationship between grapheme and phoneme yet; and, he uses different writing rules.

7. Conclusions

We described Alejandro’s writing process. According to this description, we can note the following:

Alejandro is a student of an elementary regular school. He presents learning difficulties. He could not write “correctly.” However, he did not have a full assessment by specialized teachers. His school is so far from urban areas and his parents could not take him to a special institution. Therefore, he has not received special support. Also, there is not a favorable literacy environment in his home. His teacher teaches him like his classmates. Usually, he has been marginalized and stigmatized because “he does not know or work in class.”

We focused on Alejandro because he was a child who was always distracted in class. We did not want to show his writing mistakes as negative aspects, but as part of his learning process. Errors are indicators of a process [ 5 ]. They inform the person’s skills. They allow to identify the knowledge that is being used [ 13 ]. In this way, errors can be considered as elements with a didactic value.

Alejandro showed some knowledge and also some difficulties to write. The child identifies and distinguishes letters and numbers. We do not know if he conceptualizes their use in every one. When he wrote, he shows his knowledge: letters are for reading, because he did not use any number in the words.

The writing directionality is a difficulty for Alejandro. He writes from left to right and also from right to left. We do not know why he did that. We did not research his reasons. But, it is important to know if there are any factors that influence the child to write like this.

The student does not establish a phoneme-grapheme relationship yet. He is still in an initial level to writing acquisition. He uses conventional letters and pseudo-letters to write. There are no fixed rules to write: number and variety of letters. However, we observed student’s thought about writing. He justifies his writings when he reads them and invents letters to represent some words.

There is still a limited repertoire of letters. He used a few letters of the alphabet. Therefore, Alejandro needs to interact with different texts, rather than teaching him letter by letter. Even if “he does not know those letters.” In this way, he is going to appropriate other elements and resources of the writing system.

Time he takes to write is an important element for us. He refused to write for several minutes at the beginning. After, he wrote during 1 or 2 min every word. As we mentioned previously, we believe that Alejandro did not feel sure to do the task. Perhaps, he thought that the interviewer is going to penalize for his writing “incorrectly.” He felt unable to write. Therefore, it is important that children’s mistakes are not censored in the classroom. Mistakes let us to know the child’s knowledge and their learning needs.

We considered that class work was not favorable for Alejandro. He painted letters, drawings, among others. These were to keep him busy. Therefore, it is important for the child to participate in reading and writing practices. In this way, he can be integrated into the scholar activities and is not segregated by his classmates.

About children with learning difficulties, it is important that these children write as they believe. Do not censor their writings. They are not considered as people incapable. It is necessary to consider that learning is a slow process. Those children will require more time than their classmates.

Special education plays an important role in Mexico. However, rather than attending to the student with learning difficulties in isolation, it is necessary that the teacher should be provided with information and the presence of specialized teachers in the classroom. In this way, the student with learning difficulties can be integrated into class, scholar activities, and reading and writing practices.

We presented Alejandro’s writing process in this paper. Although he was considered as a child with learning difficulties, we identified he shows some difficulties, but he knows some elements of the writing system too.

Acknowledgments

I thank Alejandro, his parents, and his teacher for the information they provided to me about him.

Conflict of interest

The authors declare no conflict of interest.

• 1. SEP. Aprendizajes Clave Para la Educación Integral. Plan y Programas de Estudio Para la Educación Básica. México, D.F.: Secretaria de Educación Pública; 2017. ISBN: 970-57-0000-1
• 2. SEP. Propuesta Educativa Multigrado 2005. México: Secretaria de Educación Pública; 2005
• 3. García-Cedillo E, Escalante I, Escandón M, Fernández L, Mustre A, Puga I. La Integración Educativa en el Aula Regular. Principios, Finalidades y Estrategias. México: Secretaría de Educación Pública; 2000. ISBN: 978-607-8279-18-0
• 4. Ferreiro E, Teberosky A. Los Sistemas de Escritura en el Desarrollo del Niño. México, D.F.: Editorial Siglo XXI; 1979. ISBN 968-23-1578-6
• 5. Dolz J, Gagnon R, Vuillet Y. Production écrite et Difficultés D’apprentisage. Genève: Carnets des Sciences de L’education. Université de Genéve; 2011. ISBN: 2-940195-44-7
• 6. INEE. Panorama Educativo de México. Indicadores del Sistema Educativo Nacional 2017. Educación Básica y Media Superior. México: Instituto Nacional para la Evaluación de la Educación; 2018
• 7. SEP. Modelo Educativo: Equidad e Inclusión. México: Secretaria de Educación Pública; 2017. ISBN: 978-607-97644-4-9
• 8. SEP. Orientaciones Generales Para el Funcionamiento de los Servicios de Educación Especial. México: Secretaria de Educación Pública; 2016. ISBN: 970-57-0016-8
• 9. SEP. Estrategia de Equidad e Inclusión en la Educación Básica: Para Alumnos con Discapacidad, Aptitudes Sobresalientes y Dificultades Severas de Aprendizaje, Conducta o Comunicación. México, DF: Secretaria de Educación Pública; 2018
• 10. Durán M. Las Adecuaciones Curriculares Individuales: Hacia la Equidad en Educación Especial. México: Secretaría de Educación Pública; 2016. ISBN 968-9082-33-7
• 11. CONAFE. Discapacidad Intelectual. Guía Didáctica Para la Inclusión en Educación Inicial y Básica. México: Secretaria de Educación Pública; 2010
• 12. Ferreiro E, Gómez M. Análisis de las Perturbaciones en el Proceso de Aprendizaje de la Lecto-Escritura. Fascículo 1. México: SEP-DGEE; 1982
• 13. Vaca J. Así Leen (Textos) los Niños. Textos Universitarios. México: Universidad Veracruzana; 2006. ISBN: 968-834-753-1

© 2019 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution 3.0 License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Continue reading from the same book

Learning disabilities.

Published: 17 June 2020

By Rakgadi Grace Malapela and Gloria Thupayagale-Tshw...

766 downloads

By Tatiana Volodarovna Tumanova and Tatiana Borisovna...

652 downloads

By Maria Tzouriadou

1005 downloads

Academia.edu no longer supports Internet Explorer.

To browse Academia.edu and the wider internet faster and more securely, please take a few seconds to  upgrade your browser .

Enter the email address you signed up with and we'll email you a reset link.

• We're Hiring!
• Help Center

LEARNING DISABILITY : A CASE STUDY

The present investigation was carried out on a girl name Harshita who has been identified with learning disability. She is presently studying at ‘Udaan’ a school for the special children in Shimla. The girl was brought to this special school from the normal school where she was studying earlier when the teachers and parents found it difficult to teach the child with other normal children. The learning disability the child faces is in executive functioning i.e. she forgets what she has memorized. When I met her I was taken away by her sweet and innocent ways. She is attentive and responsible but the only problem is that she forgets within minutes of having learnt something. Key words : learning disability, executive functioning, remedial teaching

Related Papers

The Indian Journal of Pediatrics

Sunil Karande , Madhuri Kulkarni

International Journal of Scientific Research in Computer Science Applications and Management Studies

Monika Thapliyal

This paper reviews the research work on 'learning disability' in India. It studies the social and educational challenges for learning disabled, and details research in India, concerning the aspects of diagnosis, assessment, and measures for improvement. The paper critically examines the development in their teaching-learning process, over the years. It highlights the role of special educator in their education and explores the impact of technology and specific teaching-aids in the education of learners with learning disability. The later part of the paper, throws light on the government policies for learning disabled and attempts to interpolate their proposed effect in their learning. It concludes with possible solutions, learner progress, based on the recommendations from detailed analysis of the available literature.

International Journal of Contemporary Pediatrics

Shipra Singh

Background: Specific learning disability (SLD) is an important cause of academic underachievement among children, which often goes unrecognized, due to lack of awareness and resources in the community. Not much identifiable data is available such children, more so in Indian context. The objectives of the study were to study the demographic profile, risk factors, co-morbidities and referral patterns in children with specific learning disability.Methods: The study has a descriptive design. Children diagnosed with SLD over a 5 years’ period were included, total being 2015. The data was collected using a semi-structured proforma, (based on the aspects covered during child’s comprehensive assessment at the time of visit), which included socio-demographic aspects, perinatal and childhood details, scholastic and referral details, and comorbid psychiatric disorders.Results: Majority of the children were from English medium schools, in 8-12 years’ age group, with a considerable delay in seek...

Journal of Postgraduate Medicine

Sunil Karande

Fernando Raimundo Macamo

IJIP Journal

The cardinal object of the present study was to investigate the learning disability among 10 th students. The present study consisted sample of 60 students subjects (30 male students and 30 female students studying in 10th class), selected through random sampling technique from Balasore District (Odisha). Data was collected with the help of learning disability scale developed by Farzan, Asharaf and Najma Najma (university of Panjab) in 2014. For data analysis and hypothesis testing Mean, SD, and t test was applied. Results revealed that there is significant difference between learning disability of Boys and Girls students. That means boys showing more learning disability than girls. And there is no significant difference between learning disability of rural and urban students. A learning disability is a neurological disorder. In simple terms, a learning disability results from a difference in the way a person's brain is "wired." Children with learning disabilities are smarter than their peers. But they may have difficulty in reading, writing, spelling, and reasoning, recalling and/or organizing information if left to figure things out by them or if taught in conventional ways. A learning disability can't be cured or fixed; it is a lifelong issue. With the right support and intervention, children with learning disabilities can succeed in school and go on to successful, often distinguished careers later in life. Parents can help children with learning disabilities achieve such success by encouraging their strengths, knowing their weaknesses, understanding the educational system, working with professionals and learning about strategies for dealing with specific difficulties. Facts about learning disabilities Fifteen percent of the U.S. population, or one in seven Americans, has some type of learning disability, according to the National Institutes of Health.

Indian Pediatrics

Rukhshana Sholapurwala

samriti sharma

Baig M U N T A J E E B Ali

The present article deals with the important factors related to learning disability such as the academic characteristics of learning disability, how learning disability can be identified in an early stage and remedial measures for learning disability. It tries to give an insight into various aspects of learning disability in children that will be of help in designing the tools and administering them properly.

Iconic Research and Engineering Journals

IRE Journals

This article explains how learning disability affect on one's ability to know or use spoken affects on one's ability to know or use spoken or communication, do mathematical calculations, coordinate movements or direct attention learning disabilities are ignored, unnoticed and unanswered such children's needs are not met in regular classes. They needed special attention in classrooms. Learning disability is a big challenge for student in learning environment. The teacher's role is very important for identifying the learning disability. Some common causes and symptoms are there for children with learning disability. The classroom and teacher leads to main important role in identification and to overcome their disabilities.

RELATED PAPERS

IEEE/ACM Transactions on Networking

Edwin Chong

luis fernando cortes romero

Acta Physiologiae Plantarum

sahar Hassannejad

Sebastián Álvarez Toledo

La moda española en el siglo de oro

Benito Rodriguez Arbeteta

2015 17th Conference of Open Innovations Association (FRUCT)

Alexander Borodin

The Journal of Immunology

Elisabeth Weiss

albert mahendra

Wireless Personal Communications

Pardeep Kumar

Sheyrin Putri

Eida Nadirah Roslin

Learning Discourse

Celia Hoyles

Journal of Photopolymer Science and Technology

chi fang hong

Journal of the American Academy of Dermatology

Hamza Bhatti

NASKAH DRAMA

Siti Rahma Yulia

Estudios Sobre El Mensaje Periodistico

Salvador Gomez

Journal of International Development

ABDULLAH ASIF

Acta Crystallographica Section D Biological Crystallography

Denis Moras

SHS Web of Conferences

Denni Saragih

Tropical Medicine and Infectious Disease

Mary Fullah

Chemical Sciences Journal

György Keglevich

Acta Materialia

Laurent Gremillard

Usama Geloo

Agricultural Sciences

Fifanou Vodouhe

Medicine Science and The Law

Camilla Haw

RELATED TOPICS

•   We're Hiring!
•   Help Center
• Find new research papers in:
• Health Sciences
• Earth Sciences
• Cognitive Science
• Mathematics
• Computer Science
• Academia ©2024

• Open access
• Published: 10 May 2024

Community-based participatory-research through co-design: supporting collaboration from all sides of disability

• Cloe Benz   ORCID: orcid.org/0000-0001-6950-8855 1 ,
• Will Scott-Jeffs 2 ,
• K. A. McKercher   ORCID: orcid.org/0000-0003-4417-585X 3 ,
• Mai Welsh   ORCID: orcid.org/0000-0002-7818-0115 2 , 4 ,
• Richard Norman   ORCID: orcid.org/0000-0002-3112-3893 1 ,
• Delia Hendrie   ORCID: orcid.org/0000-0001-5022-5281 1 ,
• Matthew Locantro 2 &
• Suzanne Robinson   ORCID: orcid.org/0000-0001-5703-6475 1 , 5  

Research Involvement and Engagement volume  10 , Article number:  47 ( 2024 ) Cite this article

Metrics details

As co-design and community-based participatory research gain traction in health and disability, the challenges and benefits of collaboratively conducting research need to be considered. Current literature supports using co-design to improve service quality and create more satisfactory services. However, while the ‘why’ of using co-design is well understood, there is limited literature on ‘ how ’ to co-design. We aimed to describe the application of co-design from start to finish within a specific case study and to reflect on the challenges and benefits created by specific process design choices.

A telepractice re-design project has been a case study example of co-design. The co-design was co-facilitated by an embedded researcher and a peer researcher with lived experience of disability. Embedded in a Western Australian disability organisation, the co-design process included five workshops and a reflection session with a team of 10 lived experience and staff participants (referred to as co-designers) to produce a prototype telepractice model for testing.

The findings are divided into two components. The first describes the process design choices made throughout the co-design implementation case study. This is followed by a reflection on the benefits and challenges resulting from specific process design choices. The reflective process describes the co-designers’ perspective and the researcher’s and organisational experiences. Reflections of the co-designers include balancing idealism and realism, the value of small groups, ensuring accessibility and choice, and learning new skills and gaining new insights. The organisational and research-focused reflections included challenges between time for building relationships and the schedules of academic and organisational decision-making, the messiness of co-design juxtaposed with the processes of ethics applications, and the need for inclusive dissemination of findings.

Conclusions

The authors advocate that co-design is a useful and outcome-generating methodology that proactively enables the inclusion of people with disability and service providers through community-based participatory research and action. Through our experiences, we recommend community-based participatory research, specifically co-design, to generate creative thinking and service design.

Plain language summary

Making better services with communities (called co-design) and doing research with communities (e.g. community-based participatory research) are ways to include people with lived experience in developing and improving the services they use. Academic evidence shows why co-design is valuable, and co-design is increasing in popularity. However, there needs to be more information on how to do co-design. This article describes the process of doing co-design to make telepractice better with a group of lived experience experts and staff at a disability organisation. The co-design process was co-facilitated by two researchers – one with a health background and one with lived experience of disability. Telepractice provides clinical services (such as physiotherapy or nursing) using video calls and other digital technology. The co-design team did five workshops and then reflected on the success of those workshops. Based on the groups’ feedback, the article describes what worked and what was hard according to the co-designers and from the perspective of the researchers and the disability organisation. Topics discussed include the challenge of balancing ideas with realistic expectations, the value of small groups, accessibility and choice opportunities and learning new skills and insights. The research and organisational topics include the need to take time and how that doesn’t fit neatly with academic and business schedules, how the messiness of co-design can clash with approval processes, and different ways of telling people about the project that are more inclusive than traditional research. The authors conclude that co-design and community-based participatory research go well together in including people with lived experience in re-designing services they use.

Peer Review reports

Introduction

Co-design has the potential to positively impact co-designers and their community, researchers, and organisations. Co-design is defined as designing with, not for, people [ 1 ] and can reinvigorate business-as-usual processes, leading to new ideas in industry, community and academia. As co-design and community-based participatory research gain traction, the challenges and benefits of collaborative research between people with lived experience and organisations must be considered [ 2 ].

Disability and healthcare providers previously made decisions for individuals as passive targets of an intervention [ 3 ]. By contrast, the involvement of consumers in their care [ 4 ] has been included as part of accreditation processes [ 4 ] and shown to improve outcomes and satisfaction. For research to sufficiently translate into practice, consumers and providers should be involved actively, not passively [ 4 , 5 ].

Approaches such as community-based participatory research promote “a collaborative approach that equitably involves community members, organisational representatives and researchers in all aspects of the research process” [ 6 ] (page 1). This approach originated in public health research and claims to empower all participants to have a stake in project success, facilitating a more active integration of research into practice and decreasing the knowledge to practice gap 6 . Patient and public involvement (PPI) increases the probability that research focus, community priorities and clinical problems align, which is increasingly demanded by research funders and health systems [ 7 ].

As community-based participatory research is an overarching approach to conducting research, it requires a complementary method, such as co-production, to achieve its aims. Co-production has been attributed to the work of Ostrom et al. [ 8 ], with the term co-design falling under the co-production umbrella. However, co-design can be traced back to the participatory design movement [ 9 ]. The term co-production in the context of this article includes co-planning, co-discovery, co-design, co-delivery, and co-evaluation [ 10 ]. Within this framework, the concept of co-design delineates the collaborative process of discovery, creating, ideating and prototyping to design or redesign an output [ 11 ]. The four principles of co-design, as per McKercher [ 1 ], are sharing power, prioritising relationships, using participatory means and building capacity [ 1 ]. This specific method of co-design [ 1 ] has been used across multiple social and healthcare publications [ 10 , 12 , 13 , 14 ].

A systematic review by Ramos et al. [ 15 ] describes the benefits of co-design in a community-based participatory-research approach, including improved quality and more satisfactory services. However, as identified by Rahman et al. [ 16 ], the ‘ why ’ is well known, but there is limited knowledge of ‘ how ’ to co-design. Multiple articles provide high-level descriptions of workshops or briefly mention the co-design process [ 13 , 17 , 18 , 19 ]. Pearce et al. [ 5 ] include an in-depth table of activities across an entire co-creation process, however within each part i.e., co-design, limited descriptions were included. A recent publication by Marwaa et al. [ 20 ] provides an in-depth description of two workshops focused on product development, and Tariq et al. [ 21 ] provides details of the process of co-designing a research agenda. Davis et al. [ 11 ] discuss co-design workshop delivery strategies summarised across multiple studies without articulating the process from start to finish. Finally, Abimbola et al. [ 22 ] provided the most comprehensive description of a co-design process, including a timeline of events and activities; however, this project only involved clinical staff and did not include community-based participation.

As “We know the why, but we need to know the how-to” [ 16 ] (page 2), of co-design, our primary aim was to describe the application of co-design from start to finish within a specific case study. Our secondary aim was to reflect on the challenges and benefits created by specific process design choices and to provide recommendations for future applications of co-design.

Overview of telepractice project

The case study, a telepractice redesign project, was based at Rocky Bay, a disability support service provider in Perth, Australia [ 23 ]. The project aimed to understand the strengths and pain points of telepractice within Rocky Bay. We expanded this to include telepractice in the wider Australian disability sector. The project also aimed to establish potential improvements to increase the uptake and sustainability of Rocky Bay’s telepractice service into the future. Rocky Bay predominantly serves people under the Australian National Disability Insurance Scheme (NDIS) [ 24 ] by providing a variety of services, including allied health (e.g. physiotherapy, dietetics, speech pathology, etc.), nursing care (including continence and wound care), behaviour support and support coordination [ 23 ]—Rocky Bay services metropolitan Perth and regional Western Australia [ 23 ].

The first author, CB, predominantly conducted this research through an embedded researcher model [ 25 ] between Curtin University and Rocky Bay. An embedded researcher has been defined as “those who work inside host organisations as members of staff while also maintaining an affiliation with an academic institution” [ 25 ] (page 1). They had some prior contextual understanding which stemmed from being a physiotherapist who had previously delivered telehealth in an acute health setting. A peer researcher, WSJ, with lived experience of disability, worked alongside CB. They had no previous experience in research or co-design, this was their first paid employment and they had an interest in digital technology. Peer Researcher is a broad term describing the inclusion of a priority group or social network member as part of the research team to enhance the depth of understanding of the communities to which they belong [ 26 ]. Including a peer researcher in the team promoted equity, collective ownership, and better framing of the research findings to assist with connecting with people with lived experience. These outcomes align with key components of community-based participatory research and co-design [ 27 , 28 , 29 , 30 ].

Person-first language was used as the preference of experts with lived experience who contributed to this research to respect and affirm their identity. However, we respect the right to choose and the potential for others to prefer identity-first language [ 31 ].

A summary of the structure of the phases completed before co-design workshops are represented in Fig.  1 below. Ethical approval for the project was received iteratively before each phase on the timeline (Fig.  1 ) from the Curtin Human Research Ethics Committee (HRE2021-0731). The reporting of this article has been completed in line with the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) checklist [ 7 ].

Summary of telepractice co-design project structure [ 1 ]

Here, we present an outline of the chosen research methods with descriptions of each process design choice and supporting reasons and examples specific to the study. The format is in chronological order, with further details of each step provided in Appendix 1 (Supplementary Material 1).

Methods and results

Process of co-production and preparation for co-design.

Co-production was chosen as the planning method for the study, as the inclusion of community members (Rocky Bay Lived experience experts and Staff) in each step of the research process would increase buy-in and make the research more likely to meet their needs [ 5 ]. An example of co-planning (part of co-production) includes the study steering committee, with a lived experience expert, clinician and project sponsor representatives collaborating on the selection of study aim, methods and recruitment processes. Another example of co-planning, co-design, and co-delivery was recruiting a peer researcher with disability, who worked with the embedded researcher throughout the study design and delivery.

The second process design choice was to attempt to build safe enough conditions for community participation, as people who feel unsafe or unwelcome are less likely to be able to participate fully in the research [ 1 ]. Building conditions for safety was applied by repeatedly acknowledging power imbalances, holding space for community input, and anticipating and offering accessibility adjustments without judgment.

Getting started

Understanding and synthesising what is already known about telepractice experiences and learning from lived experience was prioritised as the first step in the process. We paired a scoping review of the literature with scoping the lived experiences of the community [ 32 ]. Our reasoning was to understand whether the findings aligned and, secondly, to learn what had already been done and to ask what was next, rather than starting from the beginning [ 1 ]. Examples of strategies used in this step included interviewing clinicians and service provider Managers across Australia to establish how they implemented telepractice during the pandemic and understand their views of what worked and what did not. The second learning process occurred onsite at Rocky Bay, with people with lived experience, clinicians and other support staff, whom the embedded researcher and peer researcher interviewed to understand experiences of telepractice at Rocky Bay.

The authors presented the interview findings during focus groups with Rocky Bay participants to share the learnings and confirm we had understood them correctly. The groups were divided into staff and lived experience cohorts, allowing for peer discussions and sharing of common experiences. This helped build relationships and a sense of familiarity moving into the workshop series.

Co-design workshops

This section outlines specific components of the co-design workshop preparation before describing each of the five workshops and the final reflection session.

Staff and community co-designers

Two process design choices were implemented to form the co-design group. The first was to prioritise lived experience input as there are generally fewer opportunities for lived experience leadership in service design [ 16 ], and because the disability community have demanded they be included where the focus impacts them [ 33 ]. To acknowledge the asymmetry of power between community members, people with lived experience of disability and professionals, we ensured the co-design group had at least the same number of lived experience experts as staff.

The second priority for the co-design group was to include people for whom involvement can be difficult to access (e.g. people who are isolated for health reasons and cannot attend in-person sessions, people who live in supported accommodation, part-time staff, and people navigating the dual-role of staff member while disclosing lived experience). It was important to learn from perspectives not commonly heard from and support equity of access for participants [ 4 ].

Workshop series structure

When structuring the workshop series, lived experience co-designers nominated meeting times outside standard work hours to reduce the impact of co-design on work commitments and loss of income while participating. The workshops were designed to be delivered as a hybrid of in-person and online to give co-designers a choice on how they wanted to interact. The workshops were designed as a series of five sequential 90-minute workshops, where co-designers voted for the first workshop to be predominantly in-person and the remainder of the workshops online. Some co-designers chose to attend the initial session in person to build rapport. However, the virtual option remained available. The subsequent online sessions reduced the travel burden on co-designers, which the co-designers prioritised over further face-to-face meetings.

Workshop facilitators

To maintain familiarity and ensure predictability for co-designers, the workshops were co-facilitated by the embedded researcher and peer researcher. The co-facilitators built on relationships formed through previous interactions (interviews and focus groups), and each facilitator represented part of the co-designer group as a clinician or a person with disability. An extra support person was tasked with supporting the co-designers with disability to break down tasks and increase the accessibility of activities. The reason for selecting the support person was that they could contribute their skills as a school teacher to support the communication and completion of activities, and they had no previous experience with disability services to influence the co-designers opinions. This role was adapted from the provocateur role described by McKercher [ 1 ].

Pre-workshop preparations

To prepare for the workshops, each co-designer was asked to complete a brief survey to ensure the co-facilitators understood co-designers collect preferences and needs ahead of the session to enable preparation and make accommodations. The survey included pronouns, accessibility needs and refreshment preferences. Following the survey, the co-facilitators distributed a welcome video; the peer researcher, a familiar person, was videoed explaining what to expect, what not to expect and expected behaviours for the group to support a safe environment [ 1 ]. This process design choice was made to allow co-designers to alleviate any potential anxieties due to not having enough information and to increase predictability.

Workshop resources and supports

As the first workshop was in-person, specific process choices were made to ensure co-designers felt welcome and to uphold the dignity of co-designers with lived experience [ 34 ]. Examples of process design choices include facilitating transport and parking requests, providing easy access to the building and room, making a sensory breakout room available and having the peer researcher waiting at the entrance to welcome and guide people to the workshop room.

After reaching the workshop room, all co-designers received an individualised resource pack to equalise access to workshop materials, aiming again to balance power in a non-discriminatory way [ 11 ]. The resource pack included name tags with pronouns, individualised refreshments, a fidget toy [ 35 ] whiteboard markers and a human bingo activity described in a later section. An easy-to-apply name tag design was selected after consulting a co-designer with an upper limb difference. Further details on the resource packs are included in Appendix 1 (Supplementary Material 1).

Enabling different kinds of participation

We provided non-verbal response cards to each co-designer as communication preferences vary significantly within the disability community. The cards were intended to benefit any co-designer who struggled to use the response buttons on MS teams. The co-facilitators co-created the Yes, No, and In-the-middle response cards (Fig.  2 ) and were guided by recommendations by Schwartz and Kramer [ 29 ]. They found that people with intellectual disability were more likely to respond “yes” if the negative option included a frowning face or red-coloured images, as choosing these types of alternatives was perceived as being negative or would cause offence [ 29 ].

Non-verbal response cards

A summary of the structure and purpose of each of the five workshops is shown in Fig.  3 , followed by a more in-depth discussion of the strategies employed in each workshop.

Outline of workshop and group structures

Workshop 1: the beginning

Human Bingo was the first workshop activity, as it aimed to support relationship building in an inclusive way for both in-person and online attendees. The activity asked each co-designer to place a name in each worksheet box of someone who fit the described characteristic of that square(for example, someone who likes cooking). To include the two online attendees, laptops were set up with individual videocall streams and noise cancelling headphones enabling the online co-designers to interact one-on-one with others during the activities.

The second activity used The Real Deal cards by Peak Learning [ 36 ] to ask the co-designers to sort cards to prioritise the top five experiences and feelings they would want in a future version of telepractice. This activity aimed to set initial priorities for the redesign of telepractice [ 1 ]. Small groups with a mix of lived experience experts and staff were tasked with negotiating and collaborating to produce their top five desired experiences and feelings for future service success.

A follow-up email was sent after the session to thank co-designers, provide closure, invite feedback and let co-designers know what to expect from the next session.

Workshop 2: mapping the journey

In the second workshop, held online, the co-facilitators explained the journey mapping process and showed a draft of how the visual representation would likely look (Fig.  4 ). As the first step, co-designers were tasked with completing a series of activities to analyse lived experience interview data on the current experience of telepractice for lived experience experts. Small mixed groups were created, prioritising the needs of the lived experience experts to have staff who would be the best fit in supporting them to work through the task [ 1 ]. The small groups were allocated interview quotes corresponding to the steps of a customer journey through telepractice and asked to identify strengths, challenges and emotions associated with the current Telepractice service journey at Rocky Bay [ 1 ]. Further details on the journey map analysis are described in Appendix 1 (Supplementary Material 1) and in a published article co-authored by the co-designers (Benz et al. [ 37 ]).

Draft journey map visualisation

After workshop two, the embedded researcher drafted a journey map by compiling the co-designer group responses to the analysis activity, which was then circulated for feedback and confirmation. The completed journey map is published with further details on the process in an article co-authored with the co-designers, Benz et al. [ 37 ].

Workshop 3: ideas for addressing pain points

For the third workshop, the co-facilitators selected activities to be completed separately by lived experience and staff co-designers. The lived experience expert activity involved exploring preferences for improving pain points identified through the journey map. The lived experience expert activity was facilitated by the peer researcher and support person and included questions such as, how would it be best to learn how to use telepractice? Visual prompt cards were shared to support idea creation, where lived experience expert co-designers could choose any option or suggest an alternative (Fig.  5 ).

Option cards for Lived experience expert co-designer workshop activity

Simultaneously, the staff co-designers completed a parallel activity to address pain points from a service delivery point of view. These pain points were identified in the clinical and non-clinical staff interviews and from the journey map summary of lived experience expert interviews (analysed in Workshop 2). Staff co-designers completed a mind map based on service blueprinting guidelines by Flowers and Miller [ 38 ]. The activity used service blueprinting to identify a list of opportunities for improvement, with four prompts for co-designers to commence planning the actions required to implement these improvements. The foci of the four prompts were roles, policies, technology and value proposition [ 38 ] (described further in Appendix 1 (Supplementary Material 1)). Each of the four prompts were completed for the ten proposed opportunities for improvement to draft plans for future telepractice service delivery.

Workshop 4: story telling and generation of future state solutions

In the fourth workshop, we introduced the concept of prototyping [ 39 ] as a designerly way to test co-designers’ ideas for improving telepractice according to desirability, feasibility and viability with a wider audience of lived experience experts and staff. The co-designers helped to plan the prototyping, and accessibility was a key consideration in selecting a prototype, as the group were conscious of the target audience.

Creating the prototype was collaborative, allowing co-designers to produce an output representing their ideas. They selected a video storyboard prototype with a staff and customer version formatted similarly to a children’s book. It included cartoon animations completed on PowerPoint, voiceover narration, closed captioning and an introductory explanation from two co-designers.

After workshop four, the co-designers collaborated on the customer and staff prototypes during the two weeks between workshops four and five, with support and input from the facilitators. The prototype files were co-produced, with different co-designers working on the visual aspects, the script for the main audio narration and the introductory explanation.

Workshop 5: finishing the story

The co-design group reviewed the draft prototypes in the final workshop, with specific attention paid to the story’s cohesiveness.

The feedback questionnaire was then created to be completed by viewers outside of the co-design group after engaging with either the staff or the customer prototype. The survey allowed Rocky Bay customers and staff to contribute ideas. Following thoughtful discussions, consensus was reached by all co-designers on the final survey questions (Appendix 2 (Supplementary Material 1)).

A reflection activity concluded the final workshop, allowing co-designers to provide feedback on the co-design process, elements for improvement and aspects they valued in participating in the project. Their reflections on the benefits and challenges of co-design in this study are included in the section Co-designer’s perspectives of the workshop series , with the reflection questions included in Appendix 3 (Supplementary Material 1).

Post prototype reflection session

The prototype feedback responses were reviewed with co-designers in a final reflection session. The group then discussed adaptations to the implementation plan for proposal to Rocky Bay. Following the survey discussion, co-designers reviewed proposed service principles for the new telepractice implementation recommendations. These principles aim to align any future decisions in the implementation and service provision stages of the telepractice project with the intentions of the co-designers. An additional reflection activity was completed, specific to the telepractice proposal they had produced and the prototyping process. Feedback relevant to subsequent discussions of the challenges and benefits of co-design is included in the following section: Co-designer’s perspectives of the workshop series , with the reflection prompts in Appendix 3 (Supplementary Material 1).

Benefits and challenges

Learnings derived from completing a study of this kind are complex. However, it is necessary to reflect on which strategies used in the project were beneficial and which strategies created challenges - anticipated and unexpected. These reflections are discussed in two sections, the first being the challenges and benefits reflected upon by co-designers. The second set of reflections relates to organisational and research project-level benefits and challenges from the perspective of clinical department managers and researchers involved in the project.

Co-designer’s perspectives of the workshop series

Co-designers were positive overall about the workshop series. Responses to a prompt for one-word descriptors of their experience included “captivating, innovative, fulfilling, exciting, insightful, helpful, eye-opening and informative ” .

Co-designing as a team

A foundational strategy implemented in this project was the intentional collaboration of lived experience experts with staff; this linked to the co-design principle of prioritising relationships and sharing power. Multiple reflections commented on feeling like a team and that having diverse perspectives across the group was beneficial.

It was especially interesting to hear the perspective of clinicians (for us, the other side of Telepractice). [Lived experience expert Co-designer]

Additionally, the combination of facilitators, including an embedded researcher with an allied health clinical background, a peer researcher with lived experience and a support person with strengths in breaking down tasks, provided different facets of support and task modelling to the co-designers throughout the process.

Balancing idealism and realism

There is an inherent challenge in collaboration between lived experience experts and service providers, whereby co-designers formulate ideas for service improvement and then, in good faith, propose required changes to be implemented. Strategies to support imagination and idealism while being honest about the constraints of what can be delivered were implemented in the context of this project. This was essential to reinforce to co-designers that their contributions and ideas are valid while tempering their hopes with the truth that organisational change is challenging and funding for change is limited. Co-designers were encouraged to be cognisant of ideas that would require high investment (cost and time) and which ideas faced fewer barriers to implementation. This strategy did not prevent the ideation of changes and prioritising what mattered most to them, and co-designers felt it was beneficial in adding a level of consideration regarding what investments they deemed necessary versus those that would be nice to have. For example, having a person to call for help was viewed as necessary, while a nice to have was more advanced technological features.

I feel that the prototype is useful; however, I worry that nothing will be carried over to the Rocky Bay Service. I feel like more customers will want to access telepractice, and Rocky Bay now needs to start the implementation process to ensure that telepractice is utilised, including processes, education and training. [Clinician Co-designer]

The value of small groups

Working in small groups was another beneficial strategy, aiming to create a more hospitable environment for co-designers to voice their thoughts. The small groups varied across activities and workshops, with facilitators intentionally pairing groups that would best support the lived experience of expert co-designers completing activities. As described in the workshop sections, some activities suited mixed groups, whereas others suited lived experience expert and staff-specific groups. Two reflective comments demonstrated the benefit of the small groups, one from a clinician who reflected on supporting a fellow co-designer:

I found that in our group, all of us had a say; however, [Lived Experience Co-designer name] was a bit overwhelmed at times, so I tried to support her with that. [Clinician Co-designer]

And a lived experience expert co-designer additionally reflected:

The breakout rooms were a very good idea. It can be quite intimidating speaking in front of the main group. I found it much easier to participate in the smaller groups . [Lived experience expert Co-designer]

The second session included an unplanned whole group activity, which challenged co-designers. Co-designers reflections of this experience demonstrate the benefits of smaller groups:

I did feel that at the end when the whole group did the task, there wasn’t as much collaboration as there were quite a few more assertive participants, so the quieter ones just sat back. [Clinician Co-designer]

Accessibility and choice

A challenge navigated throughout the workshop series with a diverse group of co-designers was meeting their varying individual health and other needs. This required responding in sensitive, non-judgemental, and supportive ways to encourage co-designers to engage fully. Examples of support include the presence of a support person and adaption of resource packs for co-designers who have difficulty swallowing (re: refreshments), as well as the previously mentioned non-verbal response cards and accessible name tags.

Accessibility supports were also provided for the peer researcher during facilitation activities, including pre-written scripts to provide clarity when explaining tasks to the co-design group, written reminders and regular check-ins. A lived experience expert co-designer reflected that it was beneficial that they could tell the peer researcher was nervous but appreciated that he was brave and made them feel like they did not need to be perfect if the peer researcher was willing to give it a go.

When facilitating the sessions, the embedded researcher and peer researcher identified that the workshops were long and, at times, mentally strenuous. One co-designer requested “more breaks during each session” . Breaks were offered frequently; however, upon reflection, we would schedule regular breaks to remove the need for co-designers to accept the need for a break in front of the group. The instructions for each activity were visual, verbal and written and given at the start of a task. However, once the co-designers were allocated to breakout rooms, they could no longer review the instructions. Many co-designers suggested that having the instructions in each breakout room’s chat window would have been a valuable visual reminder.

One thing I think might of helped a little is having the instructions in the chat as I know I that I listened but couldn’t recall some of the instructions for the group task. [Lived experience expert Co-designer]

Learning new skills and gaining new insight

The co-designers considered that the benefits of working together included learning new skills and widening their understanding of research, the services they provide or use, and the differences between the priorities of lived experience experts and staff. Two lived experience experts commented that the opportunity to learn collaboration skills and create cartoons using PowerPoint were valuable skills for them to utilise in the future. One clinician reflected that the process of co-design had improved their clinical practice and increased their use of telepractice:

My practice is 100% better. I am more confident in using telepractice and more confident that, as a process, it doesn’t reduce the impact of the service- in some ways, it has enhanced it when customers are more relaxed in their own environments. I have not seen my stats, but my use of telepractice has increased significantly, too. [Clinician Co-designer]

The management co-designer acknowledged that although ideas across the group may be similar, prioritisation of their importance can vary dramatically:

Whilst all the feedback and potential improvements were very similar, some things that I viewed as not an issue, was very different to a customer’s perspective. [Management Co-designer]

Overall, the workshop series challenged co-designers. However, the provision of a supportive and accessible environment resulted in mutual benefits for the research, organisation, and co-designers themselves. The strategy for facilitating the workshops was to pose challenges, support the co-designers in rising to meet them, and take into account their capabilities if provided with the right opportunity. A lived experience expert co-designer summarised the effectiveness of this strategy:

I found the activities to be challenging without being too difficult. Each activity provided enough guidance and structure to encourage interesting group discussions and make collaboration easy. [Lived experience expert Co-designer]

Research and organisational reflections of benefits and challenges of co-design

A significant challenge in completing this project was that building foundational relationships and trust takes time. While the authors view this trust as the foundation on which community-based participatory research and co-design are built, they note the direct tension of the time needed to develop these foundational relationships with the timeline expectations of academic and organisational decision-making. The flexibility required to deliver a person-centred research experience for the co-designers resulted in regular instances when timeline extensions were required to prioritise co-designer needs over efficiency. The result of prioritising co-designer needs over research timeline efficiency was an extended timeline that was significantly longer than expected, which sometimes created a disconnect between the flexibility of co-design and the rigidity in traditional academic and organisational processes.

The impacts of a longer-than-expected timeline for completion of the co-design process included financial, project scope, and sponsorship challenges. The project’s initial scope included a co-implementation and co-evaluation phase; however, due to the three-year time constraint, this was modified to conclude following the prototyping process. Whilst the three-year period set expectations for project sponsors and other collaborators from Rocky Bay, the wider context for the project varied significantly and rapidly over this period. This included two changes in Rocky Bay supervisor and one change in Rocky Bay project sponsor. Additionally, one of the academic supervisors left Curtin. This challenge indicates that the project would benefit from key role succession planning.

The peer researcher role was beneficial in providing an opportunity for a person with lived experience to join the study in a strength-based role and experience academic and business processes. However, challenges arose with the timeline extensions, which required this part-time, casual role to be extended by seven months. While the contract extension posed budgetary challenges, the role was viewed as vital to the completion of the project.

While an essential component of research, particularly involving vulnerable populations, ethical approvals proved challenging due to the non-traditional research methods involved in co-design. It was evident to the authors that while the ethics committee staff adhered to their processes, they were bound by a system that did not have adequate flexibility to work with newer research methods, such as co-design. Multiple methods in this study were heavily integrated into the community, including embedded research, peer research and co-design.

The present ethics process provided a comprehensive review focusing on planned interactions within research sessions (e.g. interviews and workshops). Unfortunately, this failed to account for a wider view, including the initial co-production prior to ethical application and anecdotal interactions that occurred regularly in the organic co-design process. In addition to the repeated submissions required to approve the sequential study format, these interactions created a significant workload for the research team and ethics office. These challenges were compounded by the need to navigate Rocky Bay’s organisational processes and changing business needs within ethical approval commitments.

In the authors’ opinion, prioritising the inclusion of lived experience experts in co-creating outputs to disseminate findings was beneficial. The co-creation enabled an authentic representation of the study to audiences regarding community-based participatory research and co-design method implementation. For example, the presentation of a panel discussion at a conference in which the peer researcher could prerecord his responses to questions as his preferred method of participation. All posters presented by the project were formatted to be accessible to lay consumers and were collaboratively produced, with the additional benefit of the posters being displayed across Rocky Bay hubs for customers and staff to gain study insights.

Due to the co-design method’s dynamic nature, some budgetary uncertainty was challenging to navigate. However, financial and non-financial remuneration for all non-staff participants in the project was prioritised. As previously discussed, the position of peer researcher was a paid role; additionally, all lived experience expert participants were remunerated at a rate of AUD 30/hour in the form of gift cards. The carer representative on the steering committee recommended using gift cards to avoid income declaration requirements from government benefits people may receive. Non-financial remuneration for the valuable time and contribution of the co-designer group included co-authorship on an article written regarding the Journey Map they produced (Benz et al. [ 37 ]) and acknowledgement in any other appropriate outputs. The implementation proposal provided to Rocky Bay included recommendations for continued inclusion and remuneration of co-designers.

Setting a new bar for inclusion

Another benefit to reflect upon, which may be the most significant legacy of the project, was setting the precedence for the inclusion of people with disability in decision-making roles in future projects and research conducted by the University and Rocky Bay. After this project commenced, other Rocky Bay clinical projects have similarly elevated the voices of lived experience in planning and conducting subsequent quality improvement initiatives.

I’m lucky enough to have been part of a lot of projects. But I guess I probably haven’t been a part of continuous workshops, pulling in all perspectives of the organisation perfectly… So, collaboration and getting insight from others I haven’t usually was a very unique experience, and I definitely found value if this were to continue in other projects. [Manager Co-designer]

In summary, the findings from using a co-design method for the telepractice research study produced a series of benefits and presented the researchers with multiple challenges. The findings also addressed a literature gap, presenting in-depth descriptive methods to demonstrate how co-design can be applied to a specific case.

Drawn from these findings, the authors identified six main points which form the basis of this discussion. These include (1) the fact that the necessary time and resources required to commit to co-design process completion adequately were underestimated at the outset, (2) there is a need to support the health, well-being and dignity of lived experience expert participants, (3) academic ethical processes have yet to adapt to address more participatory and integrated research methods, (4) strategies used to foster strong collaborative relationships across a diverse group were valued by all participants, (5) better delineation between terminologies such as co-design and community-based participatory research or patient and public involvement would improve the clarity of research methods and author intent and, (6) broader non-traditional impacts that participatory research can create should be better quantified and valued in the context of research impact. Each point will now be discussed in further detail.

In underestimating the time and resources required to complete the telepractice study, a scope reduction was required. This scope reduction removed the study’s originally planned co-implementation and co-evaluation phases. While Harrison et al. [ 40 ] and Bodden and Elliott [ 41 ] advocate for more frequent and comprehensive evaluation of co-designed initiatives, the authors acknowledge that this became no longer feasible within the study constraints. A growing body of literature indicates expected timelines for completed co-production projects from co-planning to co-evaluation. An example by Pearce et al. [ 5 ] indicated that a timeline of five years was reasonable. In contrast, a more limited co-design process was completed with a shorter timeline by Tindall et al. [ 13 ]. Although neither of these articles were published when this study commenced, they are complementary in building an evidence base for future research to anticipate an adequate timeline.

While co-design and other co-production processes are resource and time-intensive, the investment is essential to prioritise the health and other needs of potentially vulnerable population groups in the context of an imbalance of power [ 42 ]. In exploring the concept of dignity for people with disability, Chapman et al. [ 34 ] indicated that recognising the right to make decisions and proactively eliminating or minimising barriers to inclusion are key to protecting dignity. Community participation in decision-making processes such as this study can result in messy and unpredictable outcomes. However, the onus must be placed on policymakers, organisations, and academia to acknowledge this sufficiently rather than demand conformity [ 15 ].

The authors posit that the study would have benefited from an alternative ethics pathway, which may provide additional required flexibility while upholding the rigour of the ethical review process. The increasing frequency of participatory research studies indicates that challenges experienced by the authors of this study are unlikely to be isolated. Lloyd [ 43 ] described challenges regarding information gathered in-between, before and after structured research sessions, reflecting that they relied on personal judgement of the intent to consent for research use. Similarly, Rowley [ 44 ] reflected on the ethical complexities of interacting with families and respecting their confidentiality within the context of being integrated within an organisation. While these studies were co-production in child protection and education, the ethical challenges of their reflections parallel those experienced in the telepractice study. The risks posed by inadequate ethical support in these contexts are that increased poor ethical outcomes will occur, especially in the in-between times of co-design. Therefore, an ethics pathway that involves more frequent brief liaisons with a designated ethics representative to update project progress and troubleshoot ethical considerations may better support researchers to safeguard study participants.

We believe the decision to complete a sequential workshop series with a consistent group of diverse co-designers, led by co-facilitators, was a strength of the co-design process implemented in the telepractice re-design project. The group worked together across a series of workshops, which enabled them to build solid working relationships. Pearce et al. [ 5 ], Rahman et al. [ 16 ] and Tindall et al. [ 13 ] also demonstrated a collaborative whole-team approach to co-design. By contrast, studies that involved separate workshops with different cohorts or multiple of the same workshop did not demonstrate strong collaboration between co-designers [ 18 , 19 , 20 ]. Nesbitt et al. [ 19 ] explicitly highlighted that they would improve their method by completing sequential workshops with a continuous cohort. Stephens et al. [ 45 ] found that small mixed groups were not sufficient to support the participation of people with disability, indicating that the choice to intentionally balance groups to meet the lived experience expert co-designer’s needs may have been an impacting factor on our success.

A lack of clarity in the terminology used in co-design and community-based participatory practice was identified during the completion of this study. We found that co-design frequently meant either a collaborative design process or good participatory practices [ 46 ]. When viewing the structure of the telepractice re-design project, the overarching research approach was community-based participatory-research, and the method was co-design [ 9 ]. The delineation between the overarching approach and methods clarifies the misappropriation of the term co-design with the intent of meaning public participation [ 46 ] rather than the joint process of creative thinking and doing to design an output [ 11 ]. The use of the two-level structure appears more prominent in the United Kingdom, whereas Fox et al. [ 47 ] systematic review assessing public or patient participants identified that 60% of studies originated from the United Kingdom, compared to the next highest 16% for Canada or 4% from Australia and the United States. To improve clarity and reduce confusion about the terminology used, the authors advocate for greater awareness and implementation of the delineation between the concepts of a community-based-participatory-research/patient or public involvement approach versus the co-design method.

An example of co-design being used where alternate terms such as community-based participatory processes (or research) may be more relevant was the most recent amendment to the act governing the NDIS under which this project resided [ 48 ]. The term co-design could be interpreted as an intent to collaborate with people with disability for equitable involvement in all aspects of the NDIS [ 48 ]. It is proposed that the differentiation of these terms would assist in clarifying the intent of the study and dissuade inaccurate expectations of community involvement or design processes.

Implementing community-based participatory research has demonstrated the potential to create an impact that expands further than the original aim of the study. The skills learned by co-designers, the learning of the research team in collaboration with people with disability, the engagement and skill-building of a peer researcher with lived experience, the organisations who engaged in the co-design process and the academic and lay people who engaged with research outputs, all carry a piece of the impact of the co-design process. Rahman et al. [ 16 ] contend that co-design processes positively impact communities. In the context of this study, the peer researcher was included in the National Disability Insurance Agency’s quarterly report as an example of strength-based employment opportunities, which significantly positively impacted his career prospects [ 49 ]. This project provided skills for people with disability that they value and improved the clinical practice of clinician co-designers, which echoes the conclusions of Ramos et al. [ 15 ], who described that participants felt valued and experienced improved self-esteem. There is additional intent from the authors to positively impact disability providers and academia, to advocate for greater collaboration, and to provide open-access publications to provide a stronger evidence base for co-design in clinical practice and service delivery.

Strengths and limitations

The study provides reflective evidence to support the challenges and benefits experienced during the implementation of the study. However, a limitation in the project’s design was the exclusion of outcome measures to assess the impact of process design choices directly. Stephens et al. [ 45 ] completed targeted outcome measures correlating to accessibility adaptations in co-design and conceded that the variability of findings and individual needs reduced the usefulness of these measures.

The reduction of project scope enabled the completion of the study within the limitations of budgeting and timeline restrictions. Although the scope of the project had some flexibility, there were limitations to how far this could be extended as resources were not infinite, and staffing changes meant that organisational priorities changed. Including implementation and evaluation would have improved the study’s rigour. However, Rocky Bay now has the opportunity to implement internally without potential research delays and restrictions.

The blended and flexible approach to the co-design process was a strength of the study as it met the co-designers needs and maximised the project’s potential inclusivity. This strength has the potential to positively impact other studies that can modify some of the process design choices to suit their context and increase inclusivity [ 11 ]. It is believed that the messiness of co-design is important in meeting the needs and context of each individual study; therefore, no two co-design processes should look the same.

The authors concede that the inclusion of a cohort of people with disability and clinical staff does not represent the entirety of their communities, and their proposed changes may cause some parts of the disability community to experience increased barriers [ 50 ]. It is important to note that while the co-designers who participated in this project provided initial design developments, future opportunities remain to iterate the proposed telepractice service and continue to advocate for equitable access for all.

Recommendations for future studies

Recommendations from this study fall into two categories: recommendations for those intending to utilise the described methods and recommendations for future avenues of research inquiry. For those intending to implement the methods, the primary recommendations are to build ample time buffers into the project schedule, implement key role succession planning and set remuneration agreements at the outset, and work together as partners with the mindset that all contributors are creative [ 51 ] with important expertise and invaluable insights if supported appropriately.

Regarding avenues for future inquiry, we recommend investigating a more dynamic and flexible ethics process that may utilise more frequent short consultations to respond to ethical considerations during the emergent co-design and participatory research.

In the authors’ opinion, supported by co-designers experiences, co-design is a useful and outcome-generating methodology that can proactively enable the inclusion of people with disability and service providers in a community-based participatory research approach. The process is both time and resource-intensive; however, in our opinion, the investment is justified through the delivery of direct research benefits and indirect wider community benefits. We advocate for using community-based participatory-research/processes paired with co-design to generate creative thinking within service design processes. Through co-design processes, we recommend collaborating with a single diverse group of co-designers who have the time and space to build trusting working relationships that enable outputs representative of the group consensus.

Data availability

The dataset supporting the conclusions of this article is predominantly included within the article (and its additional files). However, due to the small number of co-designers reflecting upon the research, despite deidentification, there is a reasonable assumption of identification; therefore, the reflection activity response supporting data is not available.

Abbreviations

Australian Dollar

Guidance for Reporting Involvement of Patients and the Public 2 Checklist

Human Research Ethics Committee

Doctor of Philosophy

Patient and Public Involvement

Microsoft Teams

National Disability Insurance Scheme

McKercher KA. Beyond Sticky Notes doing co-design for Real: mindsets, methods, and movements. 1 ed. Sydney, NSW: Beyond Sticky Notes; 2020. p. 225.

Google Scholar  

Mullins RM, Kelly BE, Chiappalone PS, Lewis VJ. No-one has listened to anything I’ve got to say before’: co-design with people who are sleeping rough. Health Expect. 2021;24(3):930–9. https://doi.org/10.1111/hex.13235 .

Article   PubMed   PubMed Central   Google Scholar  

Ekman I, Swedberg K, Taft C, Lindseth A, Norberg A, Brink E, et al. Person-centered Care — Ready for Prime Time. Eur J Cardiovasc Nurs. 2011;4248–51. https://doi.org/10.1016/j.ejcnurse.2011.06.008 . [cited 3/9/2022];10.

National Commission on Safety and Quality in Healthcare. Partnering with Consumers Standard. Australia: National Commission on Safety and Quality in Healthcare. 2021. https://www.safetyandquality.gov.au/standards/nsqhs-standards/partnering-consumers-standard .

Pearce T, Maple M, McKay K, Shakeshaft A, Wayland S. Co-creation of new knowledge: good fortune or good management? Res Involv Engagem. 2022;8(1):1–13. https://doi.org/10.1186/s40900-022-00394-2 .

Article   Google Scholar  

Bordeaux BC, Wiley C, Tandon SD, Horowitz CR, Brown PB, Bass EB. Guidelines for writing manuscripts about community-based participatory research for peer-reviewed journals. Prog Community Health Partnersh. 2007;1(3):281–8. https://doi.org/10.1353/cpr.2007.0018 .

Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. Res Involv Engagem. 2017;3(1):1–11. https://doi.org/10.1186/s40900-017-0062-2 .

Ostrom E, Baugh W, Guarasci R, Parks R, Whitaker G. Community Organization and the Provision of Police Services. Sage; 1973.

Masterson D, Areskoug Josefsson K, Robert G, Nylander E, Kjellström S. Mapping definitions of co-production and co-design in health and social care: a systematic scoping review providing lessons for the future. Health Expect. 2022;25(3):902–13. https://doi.org/10.1111/hex.13470 .

Bibb J. Embedding lived experience in music therapy practice: Towards a future of co-designed, co-produced and co-delivered music therapy programs in Australia. Australian Journal of Music Therapy [Journal Article]. 2022 [cited 2023/08/21];33(2):25–36. https://doi.org/10.3316/informit.829441047529429 .

Davis A, Gwilt I, Wallace N, Langley J. Low-contact Co-design: considering more flexible spatiotemporal models for the co-design workshop. Strategic Des Res J. 2021;14(1):124–37. https://doi.org/10.4013/sdrj.2021.141.11 .

Claborn KR, Creech S, Whittfield Q, Parra-Cardona R, Daugherty A, Benzer J. Ethical by design: engaging the community to co-design a Digital Health Ecosystem to Improve Overdose Prevention efforts among highly vulnerable people who use drugs. Front Digit Health [Original Research]. 2022;4:1–13. https://doi.org/10.3389/fdgth.2022.880849 .

Tindall RM, Ferris M, Townsend M, Boschert G, Moylan S. A first-hand experience of co‐design in mental health service design: opportunities, challenges, and lessons. Int J Ment Health Nurs. 2021;30(6):1693–702. https://doi.org/10.1111/inm.12925 .

Article   PubMed   Google Scholar  

Wahlin DW, Blomkamp DE. Making global local: global methods, local planning, and the importance of genuine community engagement in Australia. Policy Des Pract. 2022;5(4):483–503. https://doi.org/10.1080/25741292.2022.2141489 .

Ramos M, Forcellini FA, Ferreira MGG. Patient-centered healthcare service development: a literature review. Strategic Des Res J. 2021;14(2):423–37. https://doi.org/10.4013/sdrj.2021.142.04 .

Rahman A, Nawaz S, Khan E, Islam S. Nothing about us, without us: is for us. Res Involv Engagem. 2022;8(1):1–10. https://doi.org/10.1186/s40900-022-00372-8 .

Harrison R, Manias E, Ellis L, Mimmo L, Walpola R, Roxas-Harris B, et al. Evaluating clinician experience in value-based health care: the development and validation of the Clinician experience measure (CEM). BMC Health Serv Res. 2022;22:1–11. https://doi.org/10.1186/s12913-022-08900-8 .

Kerr JAS, Whelan M, Zelenko O, Harper-Hill K, Villalba C. Integrated Co-design: a model for co-designing with multiple stakeholder groups from the ‘Fuzzy’ front-end to Beyond Project Delivery. Int J Des. 2022;16(2):1–17. https://doi.org/10.57698/v16i2.06 .

Nesbitt K, Beleigoli A, Du H, Tirimacco R, Clark RA. User experience (UX) design as a co-design methodology: lessons learned during the development of a web-based portal for cardiac rehabilitation. Eur J Cardiovasc Nurs. 2022;21(2):178–83. https://doi.org/10.1093/eurjcn/zvab127 .

Marwaa MN, Guidetti S, Ytterberg C, Kristensen HK. Using experience-based co-design to develop mobile/tablet applications to support a person-centred and empowering stroke rehabilitation. Res Involv Engagem. 2023;9(1):1–17. https://doi.org/10.1186/s40900-023-00472-z .

Tariq S, Grewal EK, Booth R, Nat B, Ka-Caleni T, Larsen M, et al. Lessons learned from a virtual community-based Participatory Research project: prioritizing needs of people who have diabetes and experiences of homelessness to co-design a participatory action project. Res Involv Engagem. 2023;9(1):1–11. https://doi.org/10.1186/s40900-023-00456-z .

Abimbola S, Li C, Mitchell M, Everett M, Casburn K, Crooks P, et al. On the same page: co-designing the logic model of a telehealth service for children in rural and remote Australia. Digit Health. 2019;5:2055207619826468–2055207619826468. https://doi.org/10.1177/2055207619826468 .

Rocky Bay. Rocky Bay Annual Report FY 2021–2022. Perth. 2022. https://www.rockybay.org.au/wp-content/uploads/2022/12/Rocky-Bay-Annual-Report-21-22.pdf .

National Disability Insurance Agency. What is the NDIS? [Internet]. 2021 [updated 14.08.2021. https://www.ndis.gov.au/understanding/what-ndis .

Reen G, Page B, Oikonomou E. Working as an embedded researcher in a healthcare setting: a practical guide for current or prospective embedded researchers. J Eval Clin Pract. 2022;28(1):93–8. https://doi.org/10.1111/jep.13593 .

Bell S, Aggleton P, Gibson A. Peer Research in Health and Social Development 1st Edition ed. London: Routledge; 2021. p. 286.

Book   Google Scholar  

Curran T, Jones M, Ferguson S, Reed M, Lawrence A, Cull N, et al. Disabled young people’s hopes and dreams in a rapidly changing society: a co-production peer research study. Disabil Soc. 2021;36(4):561–78. https://doi.org/10.1080/09687599.2020.1755234 .

Kelly B, Friel S, McShane T, Pinkerton J, Gilligan E. I haven’t read it, I’ve lived it! The benefits and challenges of peer research with young people leaving care. Qualitative Social work: QSW: Res Pract. 2020;19(1):108–24. https://doi.org/10.1177/1473325018800370 .

Schwartz AE, Kramer JM. Inclusive approaches to developing content valid patient-reported outcome measure response scales for youth with intellectual/developmental disabilities. Br J Learn Disabil. 2021;49(1):100–10. https://doi.org/10.1111/bld.12346 .

Webb P, Falls D, Keenan F, Norris B, Owens A, Davidson G, et al. Peer researchers’ experiences of a co-produced research project on supported decision-making. Res Involv Engagem. 2022;8(1):1–10. https://doi.org/10.1186/s40900-022-00406-1 .

People with Disability Australia. PWDA Language Guide: A guide to language about disability. Sydney, Australia. 2021. https://pwd.org.au/wp-content/uploads/2021/12/PWDA-Language-Guide-v2-2021.pdf .

Peters MDJGC, McInerney P, Munn Z, Tricco AC, Khalil H. Chapter 11: Scoping Reviews (2020 version). In: Aromataris E MZ, editor. JBI Manual for Evidence Synthesis, JBI, 2020: JBI; 2020.

Australian Broadcasting Commission. ‘My purpose is changing perceptions’: Australian of the Year Dylan Alcott’s speech in full [Internet]. 2022 [cited 17.08.2023]. https://www.abc.net.au/news/2022-01-26/dylan-alcott-australian-of-the-year-speech-in-full/100783308 .

Chapman K, Dixon A, Ehrlich C, Kendall E. Dignity and the importance of acknowledgement of Personhood for people with disability. Qual Health Res. 2024;34(1–2):141–53. https://doi.org/10.1177/10497323231204562 .

Flattery S. Stim Joy: Using Multi-Sensory Design to Foster Better Understanding of the Autistic Experience: ProQuest Dissertations Publishing; 2023.

Peak Learning. The Real Deal [Internet]. 2023 [cited 6.10.2023]. https://www.peaklearning.com/trd/ .

Benz C, Scott-Jeffs W, Revitt J, Brabon C, Fermanis C, Hawkes M, et al. Co-designing a telepractice journey map with disability customers and clinicians: partnering with users to understand challenges from their perspective. Health Expect. 2023;1–11. https://doi.org/10.1111/hex.13919 .

Flowers E, Miller ME. Your Guide to Blueprinting The Practical Way. 1 ed. USA: Practical By Design 2022. 134 p. pp. 1-134.

Blomkvist J. Benefits of Service Level Prototyping. Des J. 2016;19(4):545–64. https://doi.org/10.1080/14606925.2016.1177292 .

Harrison R, Ní Shé É, Debono D, Chauhan A, Newman B. Creating space for theory when codesigning healthcare interventions. J Eval Clin Pract. 2023;29(4):572–5. https://doi.org/10.1111/jep.13720 .

Bodden S, Elliott J. Finding space for Shared futures. Edinb Archit Res. 2022;37:90–104.

Page K. Ethics and the co-production of knowledge. Public Health Research & Practice. 2022:1–5. https://www.phrp.com.au/issues/june-2022-volume-32-issue-2/ethics-and-co-production/ .

Lloyd J. Life in a lanyard: developing an ethics of embedded research methods in children’s social care. J Children’s Serv. 2021;16(4):318–31. https://doi.org/10.1108/JCS-12-2019-0047 . [cited 2023/12/05];.

Rowley H. Going beyond procedure:engaging with the ethical complexities of being an embedded researcher. Manage Educ. 2014;28(1):19–24. https://doi.org/10.1177/0892020613510119 .

Stephens L, Smith H, Epstein I, Baljko M, McIntosh I, Dadashi N, et al. Accessibility and participatory design: time, power, and facilitation. CoDesign. 2023;1–17. https://doi.org/10.1080/15710882.2023.2214145 .

Gardner G, McKercher KA. But is it co-design? And if it is, so what? 2021. https://healthvoices.org.au/issues/nov-2021/but-is-it-co-design-and-if-it-is-so-what .

Fox G, Lalu MM, Sabloff T, Nicholls SG, Smith M, Stacey D, et al. Recognizing patient partner contributions to health research: a systematic review of reported practices. Res Involv Engagem. 2023;9(1):1–30. https://doi.org/10.1186/s40900-023-00488-5 .

National Disability Insurance Agency. 2022 NDIS legislation amendments Australia; 2022. https://www.ndis.gov.au/news/7975-2022-ndis-legislation-amendments-july-update .

National Disability Insurance Agency. Report to disability ministers for Q4 of Y10 Summary Part A Australia. 2023. https://www.ndis.gov.au/about-us/publications/quarterly-reports .

Lid IM. Universal Design and disability: an interdisciplinary perspective. Disabil Rehabil. 2014;36(16):1344–9. https://doi.org/10.3109/09638288.2014.931472 .

Sanders E, Stappers PJ. Co-creation and the New landscapes of Design. CoDesign. 2008;4:5–18. https://doi.org/10.1080/15710880701875068 .

Download references

Acknowledgements

The authors acknowledge the contribution of Rocky Bay as the industry partner of this project and would like to thank the Co-designers of this project, without whom none of this was possible. The research team would also like to thank Katie Harris for her time and support throughout the workshop series, which were invaluable to the completion of the project and the formation of the published study.

The article forms part of a PhD project funded by the first author, CB’s Australian Government Research Training Program (RTP) scholarship.

Author information

Authors and affiliations.

School of Population Health, Curtin University, Bentley, Australia

Cloe Benz, Richard Norman, Delia Hendrie & Suzanne Robinson

Rocky Bay, Mosman Park, WA, Australia

Will Scott-Jeffs, Mai Welsh & Matthew Locantro

Beyond Sticky Notes, Sydney, Australia

K. A. McKercher

Therapy Focus, Bentley, Australia

Deakin Health Economics, Institute for Health Transformation, Deakin University, Melbourne, Australia

Suzanne Robinson

You can also search for this author in PubMed   Google Scholar

Contributions

CB and MW liaised with the steering committee and conceived the study and structure. SR, DH and RN guided the protocol development and ethics approval. KAM provided methodological support to the project and subject matter expertise. CB and WJS completed participant recruitment, facilitation of workshops and data collection. KAM and CB ideated the format and content of the article. CB completed data analysis and wrote the first draft of the manuscript. All authors reviewed and edited the manuscript and approved of the final version of the manuscript.

Corresponding author

Correspondence to Cloe Benz .

Ethics declarations

Ethical approval and consent.

The study was approved by the Curtin University Human Research Ethics Committee (ID# HRE2021-0731), and all participants provided written informed consent before engaging in any research activity.

Consent for publication

Not applicable.

Competing interests

Cloe Benz, Richard Norman, Delia Hendrie & Suzanne Robinson do not have any competing interests to declare. Will Scott-Jeffs, Matthew Locantro and Mai Welsh, for all or part of the study period were employed by Rocky Bay a Not-For-Profit Disability Service provider who function as the industry partner for the project. K.A. McKercher is the author of a co-design method book referenced in the article. McKercher also runs a business that helps people co-design.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary Material 1:

Appendix 1–3

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Benz, C., Scott-Jeffs, W., McKercher, K.A. et al. Community-based participatory-research through co-design: supporting collaboration from all sides of disability. Res Involv Engagem 10 , 47 (2024). https://doi.org/10.1186/s40900-024-00573-3

Download citation

Received : 13 November 2023

Accepted : 12 April 2024

Published : 10 May 2024

DOI : https://doi.org/10.1186/s40900-024-00573-3

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Community-based participatory-research
• Telepractice
• Lived experience
• Embedded researcher
• Digital health
• Patient and public involvement

Research Involvement and Engagement

ISSN: 2056-7529

• General enquiries: [email protected]

Qualitative case study on the disability acceptance experiences of soldiers with disabilities

Affiliations.

• 1 Department of Preventive Medicine, Ulsan University Hospital, University of Ulsan College of Medicine, Ulsan, Republic of Korea.
• 2 Ulsan Metropolitan City Public Health Policy's Institute, Ulsan, Republic of Korea.
• 3 Department of Preventive Medicine, University of Ulsan College of Medicine, Seoul, Republic of Korea.
• 4 Korea Counseling Graduate University, Seoul, Republic of Korea.
• PMID: 38718279
• PMCID: PMC11080673
• DOI: 10.1080/17482631.2024.2350081

Purpose: This study comprehensively examines the disability acceptance experience of individuals who become disabled following accidents in the military after enlistment.

Methods: In-depth interviews and participative observation of two soldiers with disabilities are conducted. Data sources encompass the transcripts from these interviews, relevant news videos, and articles on the participants. A qualitative case study approach is applied to conduct both "within-case" and "cross-case" analyses.

Results: Although the two participants survived a crippling accidents, their military units did not actively attempt to resolve the accident. They grappled with despair and found it challenging to accept their new status as individuals with disability. Over time, they noticed changes in their personal relationships and started considering themselves burdens on their caregivers. However, despite encountering psychological challenges, which were marked by repeated setbacks and disappointments, the soldiers consistently made determined efforts to realize their objectives. Moreover, they strove to lead purposeful lives despite suffering the adversities caused by their disabilities.

Conclusions: This study is the first in-depth examination of the disability acceptance experiences of soldiers with disability. The insights gleaned from our in-depth interviews will help formulate psychological and physical support systems for such individuals.

Keywords: Soldier with disability; acquired disability; case study; disability acceptance; qualitative case study.

• Adaptation, Psychological
• Caregivers / psychology
• Disabled Persons* / psychology
• Interviews as Topic
• Military Personnel* / psychology
• Qualitative Research*
• Young Adult

Grants and funding