Maggie Donovan-Hall | University of Southampton (original) (raw)

Papers by Maggie Donovan-Hall

African Journal of Disability

Background: The impact of upper limb absence on people’s lived experiences is understudied, parti... more Background: The impact of upper limb absence on people’s lived experiences is understudied, particularly in African countries, with implications for policy and service design.Objectives: The objective of this study was to explore the lived experiences of people with upper limb absence (PWULA) living in Uganda.Method: Informed by preliminary work, we designed a qualitative study employing semi-structured interviews to understand the experience of living with upper limb absence in Uganda. Seventeen adults with upper limb absence were individually interviewed and their interviews were analysed utilising thematic analysis.Results: Seven themes illustrating the impact on the individual’s life after amputation were identified and categorised into (1) living and adapting to life, (2) productivity and participation and (3) living within the wider environment. This study presents three main findings: (1) PWULA need psychological and occupational support services which are not available in Ug...

Disability and Rehabilitation: Assistive Technology

Background: Outcome measurement is essential to understand the impact of clinical interventions a... more Background: Outcome measurement is essential to understand the impact of clinical interventions and the performance of services. Despite national and professional body encouragement, and successful examples of system level outcome measurement within some health care settings, many barriers still exist preventing outcome measurement from becoming embedded in clinical practice. Objectives: To explore the status of outcome measurement in prosthetic rehabilitation, as applied in clinical practice, with a view to identifying areas of future work aimed at making outcome measurement in prosthetic rehabilitation a meaningful and useful reality. Study Design: Narrative review Methods: A literature search of four databases was undertaken, following the PRISMA principals appropriate to narrative reviews, and using the search terms outcome, measure*, tool, scale, instrument, prosthe*, amput* and limb loss. A total of 1116 papers were identified. Following screening 35 papers, focusing on four m...

The Qualitative Report, 2017

In the UK, mental health service users are asked to “tell their stories” within clinical settings... more In the UK, mental health service users are asked to “tell their stories” within clinical settings as a tool for diagnosis, formulation and treatment plans. Retelling, reliving and reflecting on traumatic and distressing experiences is not a benign activity. Yet the process of reframing lived experience within a personal narrative could support the development of: a more positive identity; self-management skills and improved social connections (Slade, 2009) and therefore contribute to mental health recovery. This is an exploration of my process as a wounded researcher in the development of a version of my narrative as an autoethnography. I developed a series of 54 vignettes that described memories of my lived experience. To start, I used memorable quotes - the voices of others within my narrative. Developing and analyzing my autoethnography was visceral. It highlighted aspects of my process (and the likely process of others) and raised many unresolved dilemmas. For example: what was ...

Increasing numbers of people in Lower Middle Income Countries (LMICs ) are living with upper limb... more Increasing numbers of people in Lower Middle Income Countries (LMICs ) are living with upper limb absence, however, access to P&O services are limited. This can have a devastating impact on engagement in activities of daily living, as when living at a subsistence level and without appropriate prostheses, daily tasks can be challenging to perform. The overall aim of this study is to develop a ‘fit-for-purpose’ upper limb prosthesis. However, to optimise the use and acceptability of a new prosthetic device, it is essential to understand the social, cultural and historical context of the environment. Scoping and exploratory work was carried out to underpin the research and design parameters of a ‘fit-for-purpose’ body-powered upper limb prosthesis suitable for two LMICs, Uganda and Jordan. This involved three key aspects: 1. Informal scoping interviews within a ‘Public, Patient Involvement’ (PPI) framework with clinicians, technical staff, and people with upper limb absence 2. The deve...

Prosthesis, 2021

People who either use an upper limb prosthesis and/or have used services provided by a prosthetic... more People who either use an upper limb prosthesis and/or have used services provided by a prosthetic rehabilitation centre, hereafter called users, are yet to benefit from the fast-paced growth in academic knowledge within the field of upper limb prosthetics. Crucially over the past decade, research has acknowledged the limitations of conducting laboratory-based studies for clinical translation. This has led to an increase, albeit rather small, in trials that gather real-world user data. Multi-stakeholder collaboration is critical within such trials, especially between researchers, users, and clinicians, as well as policy makers, charity representatives, and industry specialists. This paper presents a co-creation model that enables researchers to collaborate with multiple stakeholders, including users, throughout the duration of a study. This approach can lead to a transition in defining the roles of stakeholders, such as users, from participants to co-researchers. This presents a scen...

A novel engagement methodology is presented for working with multi-sector stakeholders. The propo... more A novel engagement methodology is presented for working with multi-sector stakeholders. The proposed methodology can be used to determine barriers and facilitators to translational research within a country-specific context by working with stakeholders in a responsive and collaborative way. A values-based stakeholder ethos throughout a research project lifecycle. This approach ensures the suitability and sustainability of research programmes being implemented within a complex ecosystem. A theoretical basis, drawn from academic and business innovation sectors, has been consolidated and adapted for practical application to design, direct and inform research in low resource settings; a complete engagement methodology is defined. The benefit of advocating an holistic approach and embedding stakeholder engagement has been applied in the prosthetics and orthotics sector in Cambodia. Considering these issues affects the legacy of any proposed change from a research programme, supporting ca...

The 22nd International ACM SIGACCESS Conference on Computers and Accessibility, 2020

80% of people with disabilities worldwide live in low resourced settings, rural areas, informal s... more 80% of people with disabilities worldwide live in low resourced settings, rural areas, informal settlements and in multidimensional poverty. ICT4D leverages technological innovations to deliver programs for international development. But very few do so with a focus on and involving people with disabilities in low resource settings. Also, most studies largely focus on publishing the results of the research with a focus on the positive stories and not the learnings and recommendations regarding research processes. In short, researchers rarely examine what was challenging in the process of collaboration. We present reflections from the field across four studies. Our contributions are: (1) an overview of past work in computing with a focus on disability in low resource settings and (2) learnings and recommendations from four collaborative projects in Uganda, Jordan and Kenya over the last two years, that are relevant for future HCI studies in low resource settings with communities with disabilities. We do this through a lens of Disability Interaction and ICT4D. CCS CONCEPTS • Human-centered computing ~ Human computer interaction (HCI) ~ HCI design and evaluation methods ~ Field studies • Social and professional topics ~ User characteristics ~ People with disabilities

Technology and Disability, 2021

BACKGROUND: The impact of paediatric upper limb difference may extend beyond the child themselves... more BACKGROUND: The impact of paediatric upper limb difference may extend beyond the child themselves to their parents and other family members. Previous research has found that feelings of shock, numbness and loss are common amongst parents and that peer support can be a buffer against stress. OBJECTIVE: The current study aimed to explore the experiences of parents of children with limb difference, and the role of services and prosthetic devices in these experiences. METHODS: Nine parents of children with limb difference participated in either a group (n= 2) or individual (n= 7) interview. RESULTS: Analysis of the interview transcripts revealed four themes – ‘grief and guilt’, ‘prosthesis as a tool for parental adjustment’, ‘support’ and ‘fun and humour’. CONCLUSIONS: Parents may employ coping strategies to help them adjust to their child’s limb difference, including use of a prosthesis, accessing support from statutory services and peers, and use of fun and humour within the family.

Introduction: Plaster casting and manual rectification represent the benchmark prosthetic socket ... more Introduction: Plaster casting and manual rectification represent the benchmark prosthetic socket design method. 3D technologies have increasing potential for prosthetic limb design and fabrication, especially for enhancing access to these services in lower and middle income countries (LMICs). However, the community has a responsibility to verify the efficacy of these new digital technologies. This study’s objective was to assess the repeatability of plaster casting in vivo, specifically for clinically-relevant residuum shape and landmark capture, and to compare this with three clinically-used 3D scanners. Materials and Methods: A comparative reliability assessment of casting and 3D scanning was conducted in eleven participants with established transtibial amputation. For each participant, two positive moulds were cast by a prosthetist and digitised using a white light 3D surface scanner. Between casts, each participant’s residuum was scanned. The deviation between scan volumes, cros...

Journal of Mental Health, 2019

British Journal of Occupational Therapy, 2019

IntroductionProsthetic treatment is widely used for children and adolescents with upper limb diff... more IntroductionProsthetic treatment is widely used for children and adolescents with upper limb difference, for functional benefit, cosmetic restoration or the performance of specific activities. Children and adolescents feel, however, that prostheses do not help function, are uncomfortable, are unreliable, are heavy and are not aesthetically acceptable. This research aims to develop an understanding of children’s and adolescents’ views on upper limb prostheses in relation to their daily occupations.MethodEight children and adolescents with upper limb difference participated in a focus group ( n=4) or an individual interview ( n=4). Data was analysed using thematic analysis.ResultsParticipants described both positive and negative views of their prostheses. Participants described experiences where their prosthesis was helpful to them for social interactions, when playing and in self-care and productive activities. However, participants also described choosing not to use prostheses due t...

Rheumatology, 2016

Background: The benefits of exercise on general health are well publicized for people with OA. Ho... more Background: The benefits of exercise on general health are well publicized for people with OA. However, there is a lack of engagement in healthy activity and exercise by people with OA, and despite the

Musculoskeletal care, Jan 5, 2014

Disability and Rehabilitation: Assistive Technology, 2010

User perceptions are critical, yet often ignored factors in the design and development of rehabil... more User perceptions are critical, yet often ignored factors in the design and development of rehabilitation technologies. In this article, measures for collection of patient perceptions are developed and applied to a novel upper limb workstation that combines robotic therapy and electrical stimulation (ES). Five participants with chronic upper limb hemiplegia post-stroke used a robotic workstation to undertake supported tracking tasks augmented by precisely controlled ES to their triceps muscle. Following a 6 week trial, a purpose designed set of questions was developed and individual interviews were conducted by an independent health psychologist. The simple, quick to administer question set showed that participants had a positive response to the system, and contributed valuable feedback with regard to its usability and effectiveness. Participants want a home-based system targeting their whole arm. This article demonstrates the value in assessing user perceptions of a rehabilitation system via a simple question set. While the results of this study have implications for a wider audience, our recommendations are for a qualitative study to develop a generic evaluation tool which could be used across the growing number of devices to provide feedback to enhance future development of any new technology for rehabilitation.

African Journal of Disability

Background: The impact of upper limb absence on people’s lived experiences is understudied, parti... more Background: The impact of upper limb absence on people’s lived experiences is understudied, particularly in African countries, with implications for policy and service design.Objectives: The objective of this study was to explore the lived experiences of people with upper limb absence (PWULA) living in Uganda.Method: Informed by preliminary work, we designed a qualitative study employing semi-structured interviews to understand the experience of living with upper limb absence in Uganda. Seventeen adults with upper limb absence were individually interviewed and their interviews were analysed utilising thematic analysis.Results: Seven themes illustrating the impact on the individual’s life after amputation were identified and categorised into (1) living and adapting to life, (2) productivity and participation and (3) living within the wider environment. This study presents three main findings: (1) PWULA need psychological and occupational support services which are not available in Ug...

Disability and Rehabilitation: Assistive Technology

Background: Outcome measurement is essential to understand the impact of clinical interventions a... more Background: Outcome measurement is essential to understand the impact of clinical interventions and the performance of services. Despite national and professional body encouragement, and successful examples of system level outcome measurement within some health care settings, many barriers still exist preventing outcome measurement from becoming embedded in clinical practice. Objectives: To explore the status of outcome measurement in prosthetic rehabilitation, as applied in clinical practice, with a view to identifying areas of future work aimed at making outcome measurement in prosthetic rehabilitation a meaningful and useful reality. Study Design: Narrative review Methods: A literature search of four databases was undertaken, following the PRISMA principals appropriate to narrative reviews, and using the search terms outcome, measure*, tool, scale, instrument, prosthe*, amput* and limb loss. A total of 1116 papers were identified. Following screening 35 papers, focusing on four m...

The Qualitative Report, 2017

In the UK, mental health service users are asked to “tell their stories” within clinical settings... more In the UK, mental health service users are asked to “tell their stories” within clinical settings as a tool for diagnosis, formulation and treatment plans. Retelling, reliving and reflecting on traumatic and distressing experiences is not a benign activity. Yet the process of reframing lived experience within a personal narrative could support the development of: a more positive identity; self-management skills and improved social connections (Slade, 2009) and therefore contribute to mental health recovery. This is an exploration of my process as a wounded researcher in the development of a version of my narrative as an autoethnography. I developed a series of 54 vignettes that described memories of my lived experience. To start, I used memorable quotes - the voices of others within my narrative. Developing and analyzing my autoethnography was visceral. It highlighted aspects of my process (and the likely process of others) and raised many unresolved dilemmas. For example: what was ...

Increasing numbers of people in Lower Middle Income Countries (LMICs ) are living with upper limb... more Increasing numbers of people in Lower Middle Income Countries (LMICs ) are living with upper limb absence, however, access to P&O services are limited. This can have a devastating impact on engagement in activities of daily living, as when living at a subsistence level and without appropriate prostheses, daily tasks can be challenging to perform. The overall aim of this study is to develop a ‘fit-for-purpose’ upper limb prosthesis. However, to optimise the use and acceptability of a new prosthetic device, it is essential to understand the social, cultural and historical context of the environment. Scoping and exploratory work was carried out to underpin the research and design parameters of a ‘fit-for-purpose’ body-powered upper limb prosthesis suitable for two LMICs, Uganda and Jordan. This involved three key aspects: 1. Informal scoping interviews within a ‘Public, Patient Involvement’ (PPI) framework with clinicians, technical staff, and people with upper limb absence 2. The deve...

Prosthesis, 2021

People who either use an upper limb prosthesis and/or have used services provided by a prosthetic... more People who either use an upper limb prosthesis and/or have used services provided by a prosthetic rehabilitation centre, hereafter called users, are yet to benefit from the fast-paced growth in academic knowledge within the field of upper limb prosthetics. Crucially over the past decade, research has acknowledged the limitations of conducting laboratory-based studies for clinical translation. This has led to an increase, albeit rather small, in trials that gather real-world user data. Multi-stakeholder collaboration is critical within such trials, especially between researchers, users, and clinicians, as well as policy makers, charity representatives, and industry specialists. This paper presents a co-creation model that enables researchers to collaborate with multiple stakeholders, including users, throughout the duration of a study. This approach can lead to a transition in defining the roles of stakeholders, such as users, from participants to co-researchers. This presents a scen...

A novel engagement methodology is presented for working with multi-sector stakeholders. The propo... more A novel engagement methodology is presented for working with multi-sector stakeholders. The proposed methodology can be used to determine barriers and facilitators to translational research within a country-specific context by working with stakeholders in a responsive and collaborative way. A values-based stakeholder ethos throughout a research project lifecycle. This approach ensures the suitability and sustainability of research programmes being implemented within a complex ecosystem. A theoretical basis, drawn from academic and business innovation sectors, has been consolidated and adapted for practical application to design, direct and inform research in low resource settings; a complete engagement methodology is defined. The benefit of advocating an holistic approach and embedding stakeholder engagement has been applied in the prosthetics and orthotics sector in Cambodia. Considering these issues affects the legacy of any proposed change from a research programme, supporting ca...

The 22nd International ACM SIGACCESS Conference on Computers and Accessibility, 2020

80% of people with disabilities worldwide live in low resourced settings, rural areas, informal s... more 80% of people with disabilities worldwide live in low resourced settings, rural areas, informal settlements and in multidimensional poverty. ICT4D leverages technological innovations to deliver programs for international development. But very few do so with a focus on and involving people with disabilities in low resource settings. Also, most studies largely focus on publishing the results of the research with a focus on the positive stories and not the learnings and recommendations regarding research processes. In short, researchers rarely examine what was challenging in the process of collaboration. We present reflections from the field across four studies. Our contributions are: (1) an overview of past work in computing with a focus on disability in low resource settings and (2) learnings and recommendations from four collaborative projects in Uganda, Jordan and Kenya over the last two years, that are relevant for future HCI studies in low resource settings with communities with disabilities. We do this through a lens of Disability Interaction and ICT4D. CCS CONCEPTS • Human-centered computing ~ Human computer interaction (HCI) ~ HCI design and evaluation methods ~ Field studies • Social and professional topics ~ User characteristics ~ People with disabilities

Technology and Disability, 2021

BACKGROUND: The impact of paediatric upper limb difference may extend beyond the child themselves... more BACKGROUND: The impact of paediatric upper limb difference may extend beyond the child themselves to their parents and other family members. Previous research has found that feelings of shock, numbness and loss are common amongst parents and that peer support can be a buffer against stress. OBJECTIVE: The current study aimed to explore the experiences of parents of children with limb difference, and the role of services and prosthetic devices in these experiences. METHODS: Nine parents of children with limb difference participated in either a group (n= 2) or individual (n= 7) interview. RESULTS: Analysis of the interview transcripts revealed four themes – ‘grief and guilt’, ‘prosthesis as a tool for parental adjustment’, ‘support’ and ‘fun and humour’. CONCLUSIONS: Parents may employ coping strategies to help them adjust to their child’s limb difference, including use of a prosthesis, accessing support from statutory services and peers, and use of fun and humour within the family.

Introduction: Plaster casting and manual rectification represent the benchmark prosthetic socket ... more Introduction: Plaster casting and manual rectification represent the benchmark prosthetic socket design method. 3D technologies have increasing potential for prosthetic limb design and fabrication, especially for enhancing access to these services in lower and middle income countries (LMICs). However, the community has a responsibility to verify the efficacy of these new digital technologies. This study’s objective was to assess the repeatability of plaster casting in vivo, specifically for clinically-relevant residuum shape and landmark capture, and to compare this with three clinically-used 3D scanners. Materials and Methods: A comparative reliability assessment of casting and 3D scanning was conducted in eleven participants with established transtibial amputation. For each participant, two positive moulds were cast by a prosthetist and digitised using a white light 3D surface scanner. Between casts, each participant’s residuum was scanned. The deviation between scan volumes, cros...

Journal of Mental Health, 2019

British Journal of Occupational Therapy, 2019

IntroductionProsthetic treatment is widely used for children and adolescents with upper limb diff... more IntroductionProsthetic treatment is widely used for children and adolescents with upper limb difference, for functional benefit, cosmetic restoration or the performance of specific activities. Children and adolescents feel, however, that prostheses do not help function, are uncomfortable, are unreliable, are heavy and are not aesthetically acceptable. This research aims to develop an understanding of children’s and adolescents’ views on upper limb prostheses in relation to their daily occupations.MethodEight children and adolescents with upper limb difference participated in a focus group ( n=4) or an individual interview ( n=4). Data was analysed using thematic analysis.ResultsParticipants described both positive and negative views of their prostheses. Participants described experiences where their prosthesis was helpful to them for social interactions, when playing and in self-care and productive activities. However, participants also described choosing not to use prostheses due t...

Rheumatology, 2016

Background: The benefits of exercise on general health are well publicized for people with OA. Ho... more Background: The benefits of exercise on general health are well publicized for people with OA. However, there is a lack of engagement in healthy activity and exercise by people with OA, and despite the

Musculoskeletal care, Jan 5, 2014

Disability and Rehabilitation: Assistive Technology, 2010

User perceptions are critical, yet often ignored factors in the design and development of rehabil... more User perceptions are critical, yet often ignored factors in the design and development of rehabilitation technologies. In this article, measures for collection of patient perceptions are developed and applied to a novel upper limb workstation that combines robotic therapy and electrical stimulation (ES). Five participants with chronic upper limb hemiplegia post-stroke used a robotic workstation to undertake supported tracking tasks augmented by precisely controlled ES to their triceps muscle. Following a 6 week trial, a purpose designed set of questions was developed and individual interviews were conducted by an independent health psychologist. The simple, quick to administer question set showed that participants had a positive response to the system, and contributed valuable feedback with regard to its usability and effectiveness. Participants want a home-based system targeting their whole arm. This article demonstrates the value in assessing user perceptions of a rehabilitation system via a simple question set. While the results of this study have implications for a wider audience, our recommendations are for a qualitative study to develop a generic evaluation tool which could be used across the growing number of devices to provide feedback to enhance future development of any new technology for rehabilitation.