Health and Wellbeing of Individuals with Disability

A special issue of Disabilities (ISSN 2673-7272).

Deadline for manuscript submissions: closed (28 February 2022) | Viewed by 22675

Special Issue Editors

Department of Clinical Sciences Lund, Skåne University Hospital, Orthopedics, Lund University, 221 00 Lund, Sweden
Interests: disability; cerebral palsy; quality of life; pain; spina bifida; health
Special Issues, Collections and Topics in MDPI journals
Arcada, University of Applied Sciences, 00560 Helsinki, Finland
Interests: cerebral palsy; disability; participation; functioning; person- and family centered service

Special Issue Information

Dear Colleagues,

Disability affects millions of people globally, as well as their families and society. Some individuals are born with disabilities from birth, perhaps due to a congenital medical condition or an event that happened during delivery. Others acquire disability at a later stage of life, for instance through a traumatic accident during midlife. Others still age into disability in the later years of life. Disability is multifaceted, and how it is experienced, perceived, and discussed differs across geographical and academic cultures and traditions. In the last few decades, disability-related research has been largely shaped by the International Classification of Functioning, Disability, and Health (ICF) framework, where it is recognized that activities, participation, the environment, and personal factors, in addition to body function and structures, interact to shape a person’s life. In this inaugural Issue of Disability, we encourage submissions related to quality of life (QoL), wellbeing, and health in individuals with disabilities across the lifespan from a person-centered multidisciplinary perspective. High-quality research utilizing quantitative and qualitative designs, reviews, meta-analyses, and other types of articles that address causes and effects and factors associated with QoL, wellbeing, and health in the context of disability are of interest.

Dr. Ann Alriksson-Schmidt
Dr. Ira Jeglinsky-Kankainen
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Disabilities is an international peer-reviewed open access quarterly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 1000 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • disability
  • quality of life
  • health
  • multidisciplinary
  • public health
  • participation
  • wellbeing

Published Papers (7 papers)

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Research

17 pages, 321 KiB  
Article
Living with a Rare Disease as a Family: A Co-Constructed Autoethnography from a Mother
Disabilities 2022, 2(2), 348-364; https://doi.org/10.3390/disabilities2020025 - 13 Jun 2022
Cited by 1 | Viewed by 2181
Abstract
Research into family quality of life (FQoL) is becoming increasingly popular. However, studies into the interrelations between family and individual quality of life (QoL) are still scarce. The aim of this article is to illustrate how having a child with a (rare) chronical [...] Read more.
Research into family quality of life (FQoL) is becoming increasingly popular. However, studies into the interrelations between family and individual quality of life (QoL) are still scarce. The aim of this article is to illustrate how having a child with a (rare) chronical illness/disability (specifically, Neurofibromatosis Type 1) affects both the family as a whole and its members individually. The lived experiences are recounted by the Mother (first author) and have been further explored through the method of co-constructed autoethnography. Metaphors have been used to help understand the findings. Our findings show that each individual QoL not only influences the FQoL but has a domino effect on each other. Individual lives are intertwined, and accordingly their well-being cannot be seen as being distinct from these interrelationships. (F)QoL should be viewed as a ‘praxis of care’, where caregiving occurs to and by each member, and continuously changes over time. Full article
(This article belongs to the Special Issue Health and Wellbeing of Individuals with Disability)
14 pages, 439 KiB  
Article
The Lived Experiences and Perspectives of People with Autism Spectrum Disorder in Mainstream Employment in Australia
Disabilities 2022, 2(2), 164-177; https://doi.org/10.3390/disabilities2020013 - 28 Mar 2022
Cited by 2 | Viewed by 3981
Abstract
Individuals with autism spectrum disorder (ASD) experience significant barriers to employment. This study aimed to look at the support received by individuals with ASD in gaining and maintaining open employment from their perspective. A phenomenological approach was adopted with participants (n = 9) [...] Read more.
Individuals with autism spectrum disorder (ASD) experience significant barriers to employment. This study aimed to look at the support received by individuals with ASD in gaining and maintaining open employment from their perspective. A phenomenological approach was adopted with participants (n = 9) participating in semi-structured interviews. Thematic analysis identified four key themes; being supported, feeling successful, career progression and expectations. The findings suggest that individuals with ASD receive support from many different sources in their employment including supervisors, co-workers and parents. The support they received from disability employment consultants was more focused on obtaining a job rather than job maintenance or career progression. Career progression was rarely discussed by participants with their disability employment consultant, despite some evidence of poor job matches and unused qualifications and skills (reflecting a poor investment for individuals and society). Despite this, participants reported feeling successful due to having a job, having pride in their work, and feeling valued by co-workers. The study highlights the need for more research on understanding the longer-term support needs of people with ASD in open employment. Changes in policy to better resource and incentivize disability employment providers could produce more positive outcomes for people with ASD throughout their working lives. Full article
(This article belongs to the Special Issue Health and Wellbeing of Individuals with Disability)
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13 pages, 1378 KiB  
Article
Dynamic Standing Exercise in a Novel Assistive Device Compared with Standard Care for Children with Cerebral Palsy Who Are Non-Ambulant, with Regard to Quality of Life and Cost-Effectiveness
Disabilities 2022, 2(1), 73-85; https://doi.org/10.3390/disabilities2010006 - 24 Jan 2022
Cited by 2 | Viewed by 3511
Abstract
Children with cerebral palsy who are non-ambulant cannot stand or walk independently. In Sweden, daily static standing is part of standard care for these children even though it is time-consuming and costly, and while it may benefit the well-being of many children, it [...] Read more.
Children with cerebral palsy who are non-ambulant cannot stand or walk independently. In Sweden, daily static standing is part of standard care for these children even though it is time-consuming and costly, and while it may benefit the well-being of many children, it is inconvenient for others. A novel stander enables dynamic standing through walking movements. The aim of this study was to compare dynamic and static standing regarding quality of life and cost-effectiveness. Twenty children with cerebral palsy who were non-ambulant were included in this randomized controlled study with a cross-over design. Mean age of the participants was 11.6 ± 3.6 years, nine were female. They participated in four months of static and four months of dynamic standing. Quality of life was assessed with the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), which has been shown to be valid and reliable, and is tailored to children with severe cerebral palsy. Information about other aspects of quality of life and about cost-effectiveness was collected by study-specific questionnaires. Dynamic standing was the preferred alternative from the family perspective, as it cost less (€64, p < 0.01) and had greater benefits than standard (static standing) care. From societal and healthcare provider perspectives, dynamic standing had benefits but higher costs than static standing (€290 and €354 respectively, p < 0.01). These findings may contribute to the development of individualized standing recommendations. Full article
(This article belongs to the Special Issue Health and Wellbeing of Individuals with Disability)
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12 pages, 1220 KiB  
Article
The Importance of Collaboration in Pediatric Rehabilitation for the Construction of Participation: The Views of Parents and Professionals
Disabilities 2021, 1(4), 459-470; https://doi.org/10.3390/disabilities1040032 - 30 Nov 2021
Cited by 5 | Viewed by 3881
Abstract
Purpose: Collaboration between parents and professionals is essential to enable participation of children with disabilities. Participation is a widely researched topic in pediatric rehabilitation, and evidence for it providing opportunities for involvement and a sense of belonging in community and in larger society [...] Read more.
Purpose: Collaboration between parents and professionals is essential to enable participation of children with disabilities. Participation is a widely researched topic in pediatric rehabilitation, and evidence for it providing opportunities for involvement and a sense of belonging in community and in larger society exists. There are, however, less research results on how collaboration builds participation pertaining to involvement in life situations. In collaboration with parents, therapists and teachers, the aim of the study was to describe factors that (a) promote and (b) prevent participation in life situations for school-aged children with disabilities, working towards participation in adulthood. Methods: The study applied a qualitative research design. The data was collected during the 2015–2016 academic year with five focus-group interviews by sampling procedure. The study involved five parents of children with disabilities, three therapists and two teachers. The research data was analyzed by inductive content analysis. Results: The results identified thirteen factors that promote child participation, with an emphasis on taking the child’s individuality into account. There were three barriers, which focused on attitudes or technical issues. Conclusions: The results suggest that collaboration on child-related factors has been well identified and implemented, but collaboration on enabling environmental factors needs to be developed. The results can be utilized to design what adults’ collaboration should focus on in promoting child participation. Full article
(This article belongs to the Special Issue Health and Wellbeing of Individuals with Disability)
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9 pages, 259 KiB  
Article
Predicting Depression among Jordanian Adults with Disabilities According to the International Classification of Functioning, Disability and Health: A Pilot Study
Disabilities 2021, 1(4), 450-458; https://doi.org/10.3390/disabilities1040031 - 24 Nov 2021
Cited by 1 | Viewed by 2386
Abstract
Individuals with disabilities face marginalization in society and are more likely to experience depression compared to the general population. Despite this, the health system in Jordan is not adequately equipped to screen for or manage depression as a comorbid condition. A pilot study [...] Read more.
Individuals with disabilities face marginalization in society and are more likely to experience depression compared to the general population. Despite this, the health system in Jordan is not adequately equipped to screen for or manage depression as a comorbid condition. A pilot study using a cross-sectional design was used for this study. Eligible participants were between the ages of 18 and 85, had a physical disability and resided in Jordan. Depression was measured using the Patient Health Questionnaire-9, and risk factors were measured using a sociodemographic survey. Descriptive statistics were used to report on the prevalence of depression and Chi square and Kendall Tau B tests were used to identify relationships between independent variables and depression. The study found that 40.62% of the sample met the criteria for depression. Those who were not married were found to be at higher risk for depression. The analysis also demonstrated that the number of people in a household was positively correlated with depression. This study fills in gaps concerning the prevalence of depression and its correlates among Jordanian adults with a physical disability. Professionals in Jordan, including rehab specialists, have a role in both screening for and preventing depression, and this study acts as a point of reference for these professionals. This pilot study may initiate larger studies to better understand this relationship in Jordan. Full article
(This article belongs to the Special Issue Health and Wellbeing of Individuals with Disability)
14 pages, 647 KiB  
Article
Understanding Parents’ Perspectives of Support Services for People Living with Spina Bifida and/or Hydrocephalus in Ireland: A Qualitative Exploration
Disabilities 2021, 1(4), 406-419; https://doi.org/10.3390/disabilities1040028 - 29 Oct 2021
Viewed by 2764
Abstract
Purpose: In Ireland, the complex needs of people with Spina Bifida and/or Hydrocephalus (SB and/or H) are treated across primary care and tertiary specialist services. Traditionally, there has been much variation in how primary care services are delivered. To increase equity, ‘Progressing Disability [...] Read more.
Purpose: In Ireland, the complex needs of people with Spina Bifida and/or Hydrocephalus (SB and/or H) are treated across primary care and tertiary specialist services. Traditionally, there has been much variation in how primary care services are delivered. To increase equity, ‘Progressing Disability Services for Children and Young People’ is a policy which is being implemented to reconfigure children’s services into multidisciplinary teams, for all disabilities. These changes, and an apparent discontinuity of support in the transition to adult services, requires further research exploring service delivery processes. Method: This study explored parents’ perspectives of support services for people with SB and/or H. Eight parents of people with SB and/or H participated in semi-structured interviews which were transcribed and analysed using thematic analysis. Results: Six themes were generated: (1) Difficulty accessing services; (2) Impact of waiting lists; (3) Onus on parents; (4) Importance of communication; (5) Reduced service provision following the implementation of ‘Progressing Disability Services’; and (6) Lack of adult services. Conclusions: While the service redesign for people with SB and/or H and their families is still in the implementation stage, this research contributes to the evolution of these changes by identifying the enhancing aspects such as effective communication and the inhibiting aspects including a parent’s perception of increased responsibility for supporting their family member and barriers in access to services. Full article
(This article belongs to the Special Issue Health and Wellbeing of Individuals with Disability)
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10 pages, 2468 KiB  
Article
Public Health and Disability: A Real-Life Example of the Importance of Keeping Up the Good Work
Disabilities 2021, 1(3), 151-160; https://doi.org/10.3390/disabilities1030012 - 07 Jul 2021
Viewed by 2241
Abstract
Secondary and tertiary prevention strategies are essential in targeting those with disabilities to improve their health and well-being. In Sweden, over 95% of all children with cerebral palsy (CP) participate in a follow-up program in which one of the goals is to prevent [...] Read more.
Secondary and tertiary prevention strategies are essential in targeting those with disabilities to improve their health and well-being. In Sweden, over 95% of all children with cerebral palsy (CP) participate in a follow-up program in which one of the goals is to prevent hip dislocations. To demonstrate the importance of maintaining timely, systematic, preventive, work overtime, we reviewed the incidence of hip dislocations from 2010 to 2019 and the number of children who underwent different types of hip surgeries in Sweden. Leading to 2015, the number of hip dislocations reduced from 8.8% before the introduction of the program to 0.3–0.4%, followed by a gradual increase to 0.8% in 2019. The proportion of children who underwent adductor–psoas lengthening as their primary preventative surgery decreased from 65% in 2010 to 45% in 2019, with a corresponding increase of children undergoing femoral osteotomy, indicating that more children underwent surgery at a later stage. One of the likely reasons for the increase in hip dislocations includes longer waiting periods before surgery, possibly due to a shortage of nurses. At least seven of the 29 children with dislocated hips waited more than one year for preventative surgery and developed a hip dislocation during this period. It is also possible that the increased number of children with hip dislocations may be associated with the fact that more children with CP have immigrated to Sweden in recent years without receiving corresponding compensation in healthcare resources. The results highlight the importance of constantly monitoring follow-up programs to swiftly notice alarming trends that require immediate action. Full article
(This article belongs to the Special Issue Health and Wellbeing of Individuals with Disability)
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