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Wheelchair service provision education for healthcare professional students, healthcare personnel and educators across low- to high-resourced settings: a scoping review protocol

KAMALAKANNAN, Sureshkumar
RUSHTON, Paula W
GIESBRECHT, Ed
RUSAW, David F
BOUZIANE, Selsabil-A
NADEAU, Melodie
MCKEE, Jennifer
GOWRAN, Rosemary J
KIRBY, R L
PEDERSEN, Jessica P
TASIEMSKI, Tomasz
BURROLA-MENDEZ, Yohali
TOFANIN, Marco
GOLDBERG, Mary
PEARLMAN, Jon
2020

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Purpose

Appropriate wheelchair provision is necessary for addressing participation barriers experienced by individuals with mobility impairments. Health care professionals involved in the wheelchair service provision process require a specific set of skills and knowledge to enable wheelchair use that meets individual posture, mobility and daily living requirements. However, inconsistencies exist in academic programmes globally about providing comprehensive education and training programmes. The planned scoping review aims to review and synthesize the global literature on wheelchair service provision education for healthcare professional students, healthcare personnel and educators offered by universities, organizations and industries.

 

Methods

This scoping review will be guided by the Joanna Briggs Institute (JBI) methodological framework. Comprehensive literature searches will be conducted on various global electronic databases on health to seek out how wheelchair service provision education is organized, integrated, implemented and evaluated. Two independent reviewers will perform eligibility decisions and key data extractions. Data from selected studies will be extracted and analysed using conventional content analysis. Information related to wheelchair service provision education including curriculum development, content, teaching methods, evaluation and models of integration will be synthesized.

 

Implications and dissemination

The planned scoping review will be the first to examine all aspects of wheelchair service provision education across professionals, settings and countries. We anticipate that results will inform the content of a Wheelchair Educators’ Package, and if appropriate, a follow-up systematic review. An article reporting the results of the scoping review will be submitted for publication to a scientific journal.

Multifaceted interventions for supporting community participation among adults with disabilities

GROSS, Judith
MONROE-GULICK, Amalia
DAVIDSON-GIBBS, Debbie
NYE, Chad
June 2020

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This Campbell systematic review and meta-analysis examines the impact of multifaceted interventions on community participation outcomes for adults with disabilities, and aims to find effective components of the interventions. The review summarizes the findings from 15 reports of multifaceted interventions in five countries.

Included studies employ at least two interventions designed to address two or more participant characteristics (e.g., skill enhancement, behavior/attitude change) and/or environmental characteristics (e.g., participant interactions with people, places, or things) resulting in outcomes that provide direct access to the community (e.g., competitive employment, adult learning, housing) or are a dimension of community participation (e.g., self-determination, quality of life, social networking).

 

Campbell Systematic Reviews. 2020; 16:e1092.

https://doi. org/10.1002/cl2.1092.

Introduction: disability, partnership, and family across time and space

VIKSTRÖM, Lotta
SHAH, Sonali
JANSSENS, Angélique
2020

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Notions of family life and romantic partnership, like notions of disability, have been culturally constructed and socially produced over historical time, and our understandings of these notions are being continually challenged and re-negotiated across time and space. Policies, institutions, and cultural practices across the globe have brought about changes to the construction of the family and to the rights and inclusion of disabled people in private and public life. This special issue brings together a collection of studies from different countries and time periods to explore the interplay between disability, romantic partnerships, and family life across the individual lifetime and between generations. With this interdisciplinary collection, we seek to merge disability research and research on family and partnerships through a life course lens. This offers unique insights and opportunities to interconnect his- torical and cultural location and changing social institutions with individual and family experiences. This introduction presents the eight studies in the collection and discusses them within a life course frame that views disabled people’s roles as partners, spouses, and members of a family. In so doing, it engages in an analysis of (dis)similarities concerning how family dynamics, romantic relationships, and disability have developed over time and in different spaces.

Multifaceted interventions show limited impact on community participation among adults with disabilities

GROSS, Judith
MONROE-GULICK, Amalia
DAVIDSON-GIBBS, Debbie
NYE, Chad
June 2020

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This Campbell systematic review and meta-analysis examines the impact of multifaceted interventions on community participation outcomes for adults with disabilities, and aims to find effective components of the interventions. The review summarizes the findings from 15 reports of multifaceted interventions in five countries (USA, China, Germany, Italy, Australia) with the majority from USA (10).

Included studies employ at least two interventions designed to address two or more participant characteristics (e.g., skill enhancement, behavior/attitude change) and/or environmental characteristics (e.g., participant interactions with people, places, or things) resulting in outcomes that provide direct access to the community (e.g., competitive employment, adult learning, housing) or are a dimension of community participation (e.g., self-determination, quality of life, social networking).

A total of 15 studies using a multifaceted intervention were included in this review. Of these, nine were randomized and six were quasi-experimental. Study participants were adults, 18 years or older, with a disability, who had exited secondary school services. Participants identified as having the following disabilities: intellectual disability, mental illness, traumatic brain injury, aging-related disabilities (e.g., dementia, Alzheimer’s, reduction in activities of daily living), or combinations of two or more classifications.

 

Campbell Systematic Reviews. 2020;16:e1092.

https://doi.org/10.1002/cl2.1092

Marriages among people with disabilities in 19th-century Sweden: marital age and spouse’s characteristics

VIKSTRÖM, Lotta
HAAGE, Helena
HÄGGSTRÖM LUNDEVALLER, Erling
2020

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While marrying was an expected event in 19th-century Western society and has been subject to much historical research, there are few studies on how disabilities influenced people’s marriage patterns and spouse selection. The aim of this analysis is to contribute clarification on this issue by examining with whom disabled men and women married and the marital age and socio-demographic characteristics of them and their spouses. In total, 188 disabled individuals born in the first half of the 19th century and who married in the Sundsvall region, Sweden, are studied. The results reveal that disabled men and women did not marry each other, and they entered into marriage at a slightly higher age than the average, although there was usually no marked age gap between them and their spouse. Endogamous patterns were primarily found regarding the socio-spatial background of the two spouses. This analysis is one of the few studies identifying the mar- riages among a comparatively large number of disabled people using demographic data. Their participation in the partner pool highlight their agency historically and emphasize that disability did not lead to distance from social life in past society.

 

 

Universal Notions of Development and Disability: Towards Whose Imagined Vision?

RAO, Shridevi
KALYANPUR, Maya
2020

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This paper addresses the epistemological dissonance created by the growing movement to impose universal templates of disability and disability-related practices to countries in the Global South and the subsequent erasure of indigenous understandings of disability. Underlying this dissonance, we argue, are the deeply problematic beliefs in universal notions of disability and global development that are anchored to colonial frameworks of understanding and approaching human differences. We explore the presence of these colonial frameworks in three specific areas: the language of disability; understandings of personhood; and notions of inclusivity. We propose that bringing about transformation in these areas would mean using alternative indigenous strengthsbased frameworks of thinking and practices that uncover and value local epistemologies, understanding the complexities of local cultural, historical, and material contexts, and resisting colonial modes of thinking that label these practices as backward.

 

Disability & the Global South (DGS), 2020, Vol. 7 No. 1

The impact of disability on partnership formation in Sweden during 1990-2009

NAMATOVU, Fredinah
HÄGGSTRÖM LUNDEVALLER, Erling
VIKSTRÖM, Lotta
2019

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Evidence suggests that disability negatively affects people’s propen- sity to find a partner. Persons with disabilities that eventually find a partner do so later in life compared to the average population. There is a lack of studies on the differences in partnership opportu- nities for persons with disabilities compared to those without dis- abilities in Sweden. The aim of this study is to assess the impact of disability on partnership formation and to assess whether partner- ship formation varies as a function of individual demographic and socio-economic factors. We use nationwide data available in the Swedish Initiative for Research on Microdata in Social and Medical Sciences (Umeå SIMSAM Lab). We follow persons born from 1973 to 1977 when they were from 16 to 37 years of age and analyze their data using logistic regression. Our findings indicate that regardless of whether a person started to receive a disability pension at an early age or later, it was associated with lower odds for partnership forma- tion. For persons who started receiving disability pension from 16 to 20 years of age, chances for partnership formation reduced with increase in age of partnership. Individuals that started to receive disability pension later were more likely to form partnership prior to receiving disability pension. Partnership formation was less likely among persons born outside Sweden, in persons with mothers born outside Sweden, in individuals born by unmarried mothers and in persons, whose mothers had a high level of education. Partnership was high among women and among persons who had many mater- nal siblings. In conclusion, receiving disability pension was associated with reduced chances for partnership formation. Receiving disability pension might imply financial constraints that negatively influence partnership formation supporting Oppenheimer’s theory on the eco- nomic cost of marriage and the uncertainty hypothesis.

Exploring barriers to physical activity of patients at the internal medicine and surgical wards: a retrospective analysis of continuously collected data

KOENDERS, Niek
WEENK, Mariska
VAN DE BELT, Tom H
VAN GOOR, Harry
HOOGEBOOM, Thomas J
BREDIE, Sebastian J H
November 2019

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Purpose: To analyse physical activity of patients during their hospital stay and to explore the relationship between physical activity and barriers to physical activity.

 

Methods: This was a secondary analysis of physical activity data for patients admitted to the internal medicine and surgical wards. Physical activity data, collected with a wireless patch sensor, was operationalized as time spent lying, sitting/standing, and walking. Barriers to physical activity included patients’ pain levels, the use of urinary catheters, intravenous tubing, oxygen lines, drains, and level of dependence. Regression analysis explored the relationship between physical activity and barriers to physical activity.

 

Results: Physical activity data were collected in 39 patients (aged 27–88, mean 54 years) during hospital stay. Patients were admitted for a median of 10 d (interquartile range [IQR]: 7–15 d). These patients were lying for a median of 12.1 h (7.6–17.7), sitting/standing 11.8 h (6.3–15.7), and walking 0.1 h (0–0.3) per day. Time lying during the day related to pain levels (β = 0.4 h per unit increase in pain, p < 0.01) and drain use (β = 3.1 h, p < 0.01).

 

Conclusions: Patients spent the most time during the hospital stay lying in bed. Improved pain management and decreased drain use may be worth exploring to increase inpatient physical activity.

Equal reproduction rights? The right to found a family in United Nations’ disability policy since the 1970s

VAN TRIGT, Paul
2019

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With the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006, disability as an issue of human rights and international law can no longer be ignored. The history of this convention can be traced back to the 1970s, when disability was framed in United Nations (UN) declarations as a human-rights issue at the global level. One of the recurrent topics of debate during this trajectory was the right of people with dis- abilities to found a family. This right was far from self-evident and was evaluated very differently by various stakeholders.

This study follows the right to have a family in UN disability policy since the 1970s. The history of the family in relation to disability at the global level has been a neglected field of enquiry compared to other concepts such as gender and race. This study investigates how and why the right to found a family was framed in the Declarations on the Rights of Mentally Disabled Persons (1971) and Disabled Persons (1975), the International Year of Disabled Persons (1981), the International Decade of Disabled Persons (1983 − 1992), the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) and the UNCRPD in 2006.

The trajectory of the right of people with disabilities to found a family that emerges from these cases shows a change in the 1990s from a social-policy to a human-rights approach towards disability – which reflects a broader trend in global and local histories of human rights. In the case of reproductive rights of people with disabilities this change meant that the emphasis was laid more on providing a legal protection for the individual against the interference of others (so-called negative freedom) than on enhancing the opportunities for disabled people to practice their (positive) freedom.

Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress

BECKERS, Laura W M E
SMEETS, Rob J E M
VAN DER BURG, Jan J W
August 2019

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Purpose: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability.

 

Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child’s therapy.

 

Results: The proposed definition of therapy-related parental stress is “the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)”. A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives.

 

Conclusions: This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research.

Supporting the enactment of inclusive pedagogy in a primary school

BRENNAN, Aoife
KING, Fiona
TRAVERS, Joe
2019

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While inclusion has generally been accepted as orthodoxy, a knowledge – practice gap remains which indicates a need to focus on inclusive pedagogy. This paper explores how teachers in the Republic of Ireland primary school were supported to develop inclusive pedagogy to meet the needs of learners with special educational needs (SEN). It is underpinned by a conceptual framework which combines an inclusive pedagogical approach and key principles of effective professional development (PD) arising from the literature, which informed the development of a professional learning community (PLC) for inclusive practice in a primary school. The impact of the PD on teachers’ professional practice was explored using an evidence-based evaluation framework. Analysis of interview and observation data evidenced that engagement with inclusive pedagogy in a PLC, underpinned by critical dialogue and public sharing of work, positively impacted teacher attitudes, beliefs, efficacy and inclusive practice. This research offers a model of support for enacting inclusive pedagogy.

Patient and caregiver experiences on care transitions for adults with a hip fracture: a scoping review

ASIF, Maliha
CADEL, Lauren
KULUSKI, Kerry
EVERALL, Amanda C
GUILCHER, Sara J T
May 2019

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Purpose: The purpose of this scoping review was to explore the literature on experiences and perspectives of patients with hip fractures and their caregivers during transitions in care.

 

Methods: Seven databases were searched for studies published between 1 January 2000 and 3 July 2018. Grey literature was also searched.

 

Results: Eleven articles met the inclusion criteria. The scoping review found that patients and caregivers encounter several challenges during care transitions including the following: lack of information sharing, role confusion and disorganized discharge planning. Common suggestions reported in the literature for improving care transitions were: increasing written communication, offering a patient representative role, using technology for knowledge dissemination and increasing geriatrician involvement.

 

Conclusions: The results of this scoping review provide a useful foundation from which to build strategies to address challenges such as lack of information sharing, role confusion and disorganized discharge planning experienced by patients and caregivers during care transitions. Further research needs to explore the development of strategies to promote patient-centered care especially during discharge from an acute care facility.

‘Power-Hurt’: The Pains of Kindness Among Disabled Karen Refugees in Thailand

COLE, Tomas
2019

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In this paper I show how, for many Karen living as refugees in ‘temporary-shelter-areas’ in Thailand, acts of care and kindness often slipped into something painful and controlling. Drawing on fieldwork among Karen refugees disabled by landmines I show how asking for and receiving help was almost always accompanied by the visceral sensation of ana, literally, ‘power hurt’. On the one hand, ana was the force driving the circulation of care and kindness, provoking people to help others. On the other hand this circulation also carried with it the constant potential to compromise not only the recipient’s but also the donor’s ‘power’, which was understood as their capacity to have an effect on the world. In this manner ana may offer us with a way to grasp the ethical-affective basis of a social arrangement that slips smoothly between lateral solidarities and vertical hierarchical relations allowing egalitarianism and hierarchy to co-exist.

Impact of parenting a child with cerebral palsy on the quality of life of parents: A systematic review of literature

RAMANANDI, Vivek H
PARMAR, Trupti Rudra
PANCHAL, Juhi Kalpesh
PRABHAKAR, M M
et al
2019

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Purpose: The implications of parenting a child with cerebral palsy (CP) are multifaceted, as parents have to cope with their child’s functional limitations and specific needs, and prepare for the possibility of long-term dependence. There has been significant research on the consequences of managing these parenting tasks. This article reviews the literature on the effects of parenting children with CP, and summarises the related factors.

 

Methods: A systematic search of online databases was conducted and, based on the reference lists of selected articles, further studies were identified. Thirty-six articles that met the inclusion criteria were analysed.

 

Conclusion & Implication: Parents of children with CP were found to have lower quality of life, associated with high levels of stress and depression, due to factors such as child behaviour and cognitive problems, low caregiver self-efficacy and low social support. The implications of these findings in relation to the planning and development of interventions addressing the family as a whole are discussed. The aim is to enhance parents’ competence and resources so that they are better able to cope with the demands of parenting their children.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Reimagining personal and collective experiences of disability in Africa

HOWELL, Colleen
LORENZO, Theresa
SOMPETA-GCAZA, Siphokazi
2019

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This paper explores understandings of disability in Africa through the personal and collective experiences of a group of postgraduate students at the University of Cape Town in South Africa. The students, as disabled people themselves or practitioners working in the field across Africa, were required to capture their understanding of disability on the continent in a poster, set as a summative assessment task. What emerges from the students’ posters provides valuable insights into the complex social, political and economic factors that influence and shape the experience of disability in Africa. The paper argues that these insights are especially important to existing conceptual thinking around disability and its importance to discussions on Africa and its development. It suggests that grappling more carefully with the experience of disability in Africa brings much needed voices from Africa and the global South into the field of Disability Studies and deepens these debates in valuable and necessary ways.

 

Disability and the Global South, 2019, Vol.6, No. 2

Enabling appropriate personnel skill-mix for progressive realization of equitable access to assistive technology

SMITH, Emma M
GOWRAN, Rosemary Joan
MANNAN, Hasheem
DONNELLY, Brian
ALVAREZ, Liliana
BELL, Diane
CONTEPOMI, Silvana
ENNION (WEGNER), Liezel
HOOGERWERF, Evert-Jan
HOWE, Tracey
JAN, Yih-Kuen
KAGWIZA, Jeanne
LAYTON, Natasha
LEDGERD, Ritchard
MACLACHLAN, Malcolm
OGGERO, Giulia
PETTERSSON, Cecilia
POUSADA, Thais
SCHEFFLER, Elsje
WU, Sam
2018

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Background and Methods: This paper reviews the current capacity of personnel in enabling access to assistive technology (AT) as well as the systems and processes within which they work, and was reviewed, discussed, and refined during and following the Global Research, Innovation, and Education in Assistive Technology (GREAT) Summit.

 

Findings: Key concepts addressed include a person-centred team approach; sustainability indicators to monitor, measure, and respond to needs for service design and delivery; education, research, and training for competent practice, using the six rehab-workforce challenges framework; and credentialing frameworks. We propose development of a competence framework and associated education and training programs, and development and implementation of a certification framework for AT personnel.

 

Conclusions: There is a resolve to address the challenges faced by People globally to access assistive technology. Context specific needs assessment is required to understand the AT Personnel landscape, to shape and strengthen credentialing frameworks through competencies and certification, acknowledging both general and specific skill mix requirements.

Education, work, and motherhood in low and middle income countries: A review of equality challenges and opportunities for women with disabilities

TEFERA, Belaynesh
et al
March 2018

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This systematic review examined the equality challenges and opportunities for women with disabilities in low- and middle-income countries (LMICs) to participate and succeed in education, employment, and motherhood. The search of Web of Science, PsychINFO, Google Scholar, and MEDLINE databases yielded 24 articles, which were subsequently passed through open, axial, and selective coding. The resulting review found that women with disabilities in LMICs have severe difficulty participating and succeeding in education, employment, and motherhood. 

 

Social Inclusion, Vol 6, No 1, 82–93

‘Black on the inside’: albino subjectivity in the African novel

LIPENGA, Ken Junior
NGMIRA, Emmanuel
2018

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The last decade has seen increased attention to the treatment of people with albinism in several African countries, particularly the peril they find themselves in due to stigma and superstition. As a way of countering these misconceptions, there has been educative activism from legal, medical as well as religious perspectives. In this paper, we draw upon a different discourse- literary representation- arguing that in selected African novels, the authors employ a variety of strategies that counter harmful stereotypes about albinism, and in the process act as literary interventions that enable an appreciation of the person behind the skin condition. Drawing from insights in Literary Disability Studies, the discussion examines the representation of albinism in four African novels: Petina Gappah’s The Book of Memory (2015), Meg Vandermerwe’s Zebra Crossing (2013), Unathi Magubeni’s Nwelezelanga: The Star Child (2016), and Jenny Robson’s Because Pula Means Rain (2000), and highlights the way albinism is presented as bodily condition that intersects with other experiences on the continent, including indigenous epistemologies, gender, sexuality and family relationships. 

 

Disability and the Global South, 2018, Vol.5, No. 2

Social relationships, mental health and wellbeing in physical disability: a systematic review

TOUGH, Hannah
SIEGRIST, Johannes
FEKETE, Christine
May 2017

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The aim of this study is to systematically review quantitative studies exploring associations of social relationships with mental health and wellbeing in persons with physical disabilities. The objective is to summarise a complex and heterogeneous body of empirical research on the association of different social relationship constructs with mental health and wellbeing in physical disability and to highlight conceptual and methodological deficiencies in the field of research. The literature search included original articles published in English between January 1, 1995 and May 31, 2016. Data was extracted on study and participants’ characteristics, independent and dependent variables, used measures and effects sizes of associations between social relationships and mental health or wellbeing. A narrative review was performed to synthesise findings along the constructs social support, social networks, negative social interactions, family functioning and relationship quality.  Of the 63 included studies, 47 were cross-sectional and 16 longitudinal.

BMC Public Health (2017) 17:414 

DOI 10.1186/s12889-017-4308-6

Extra costs of living with a disability: A review and agenda for research

MITRA, Sophie
PALMER, Michael
KIM, Hoolda
MONT, Daniel
GROCE, Nora
April 2017

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Background
There has been a growing interest in disability and poverty on the international research and policy stages. Poverty assessments for persons with disabilities may be affected by the experience of extra costs associated with a disability.

Objective
This article provides a systematized review of the global literature on the direct costs associated with living with a disability at the individual or household level.

Methods
We searched three databases for peer-reviewed journal articles that estimated extra costs associated with disability: Econlit, SocIndex and PubMed.

Results
We found 20 such studies conducted in 10 countries. These studies were predominantly from high-income countries. Although studies were heterogeneous (e.g., in terms of disability measures and cost methodologies), estimated costs were sizeable and some patterns were consistent across studies. Costs varied according to the severity of disability, life cycle and household composition. Highest costs were observed among persons with severe disabilities, and among persons with disabilities living alone or in small sized households.

Disability and Health Journal
Volume 10, Issue 4, October 2017, Pages 475-484
https://doi.org/10.1016/j.dhjo.2017.04.007

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