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.
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BACKGROUND AND PURPOSE: To reduce the individual, societal, and economic burden of the high sick leave rates due to chronic pain, it is essential to find effective strategies for increasing return to work (RTW). Although multimodal rehabilitation programs (MMRPs) may have positive effects on RTW, the results are inconsistent. This study explores the factors that contribute to decreasing sick leave and increasing RTW in patients with chronic pain who completed a MMRP.
METHOD: Four focus groups and three individual interviews were conducted. In total, 18 patients were interviewed. All patients had chronic pain and had completed a MMRP. They were either employed or unemployed, either working to some degree or fully on sick leave. The data were analysed using qualitative content analysis.
RESULTS: Three main categories were identified: Knowledge and understanding–prerequisites for tailored solutions; Individual adaptations–necessary but difficult to implement; and Stakeholder collaboration–needs improvement.
CONCLUSION: The participants described a variety of facilitating and limiting factors that created complex prerequisites for RTW. This finding makes it clear that these patients need tailored interventions and strong collaboration among all stakeholders throughout the rehabilitation process. Tailored interventions and collaborations could improve the effectiveness of MMRPs.
Purpose: To explore the experiences of being a family with one member suffering from severe traumatic brain injury (STBI) up to 7 years earlier through narrative family interviews.
Methods: There are few studies where a family as a unit, including persons with STBI, are interviewed together. This study used a family systems research approach following a qualitative interpretative design. Therefore, 21 families with a total of 47 family members were interviewed. Qualitative content analysis was used to reveal categories with sub-categories and a theme.
Results: “From surviving STBI towards stability, through the unknown, into a new everyday life and a new future as a family” characterized the implicit message. The results revealed two categories both with three subcategories. The first category characterized the rapid change from a normal everyday life to one of uncertainty and finally to one of stability, and the second category described how it is to adapt as a family after STBI.
Conclusions: Long-term experiences of STBI show the importance for the whole family of belonging to a context, having a job, and having something to belong to as a way to achieve stability. Families` feelings of loneliness and lack of treatment and support are challenges for professionals when trying to involve families in care and rehabilitation.
Purpose: Sleep problems are common in children with cerebral palsy (CP) and have a large impact on child health and family functioning. This qualitative study aimed to explore parental perspectives regarding the care for sleep of their young child (age 1–8 years) with CP.
Materials and methods: Individual, semi-structured interviews were conducted with eighteen parents of a child with CP (GMFCS levels I-V). Inductive thematic analysis of the data was performed within each of the three preidentified domains: 1) Current situation; 2) Concerns; 3) Needs.
Results: In total, sixteen themes were identified across the three domains. Within the families’ Current situation, parents expressed various issues concerning the care for sleep of their child both at night and during daytime, which are hampered by perceived deficiencies in healthcare, such as limited attention for sleep and lack of knowledge among health professionals. Themes within the Concerns and Needs domains encompassed experiences in the home environment relating to child, family and social aspects, while experiences in the healthcare setting included clinical practices and attitudes of healthcare professionals, as well as the broader organisation of care for sleep.
Conclusions: Parents face numerous challenges caring for their child’s sleep and the burden placed on families by sleep problems is underappreciated. In order to break the vicious circle of sleep problems and their disastrous consequences on the wellbeing of families, we need to wake up to parent-identified issues and shortcomings in healthcare. Care for sleep should be integrated into paediatric rehabilitation through routine inquiries, using a family-centered and multidisciplinary approach.
Background: Plaster of Paris (POP) is being used in different ways in the field of medicine, dentistry and rehabilitation. One of its uses is in the manufacture of models of body segments in prosthetics and orthotics. It is used as a one-off procedure in which the used material is dismantled and discarded. The disposal of discarded materials does not allow easy decomposition which then pollutes the environment. It is not known whether this material could be reused if recycled.
Objectives: The main objective of the study was to recycle POP models and determine its reuse in producing models with identical qualities, and thus reduce environmental pollution.
Method: The procedure adopted was to break discarded models into small pieces, remove impurities and dirt; then the sample models were milled, washed, dried and pulverised. The POP models were heated to evaporate crystalline water in order to determine for how many times it could be recycled while retaining the desired strength, setting time and working characteristics.
Results: The recycled POP reached higher setting temperatures and was stronger in terms of compressive strain and strength than the virgin POP. The highest temperature recorded for recycled POP was 40°C, which was higher than that for virgin powder (32.5°C). Testing compressive strength of all cylinders in all groups showed that the average compressive strength of the recycled powder mixed with water in a ratio of 1:1 was 2407 KN/m² and the ratio of 2:3 resulted in a compressive strength of 1028 KN/m², whereas the average compressive strength of virgin POP powder mixed with water in a ratio of 1:1 was 1807 KN/m² and the ratio of 2:3 resulted in a compressive strength of 798 KN/m². There were no differences in working properties between the recycled POP and the virgin POP.
Conclusion: It was therefore concluded that under controlled conditions, such as grinding size, heating temperature, time and avoidance of contamination, used POP could be continuously recycled, resulting in stronger and workable casts.
African Journal of Disability, Vol. 9, 2020
Background: Despite a global commitment to the right to education for persons with disabilities, little is known about how to achieve inclusive education in practice, particularly in low- and middle-income countries (LMICs), where the majority of the world’s people with disabilities reside. Moreover, although exclusion from education is magnified by intersecting gender and socioeconomic inequalities, there is especially little knowledge regarding what approaches to inclusive education are effective amongst girls with disabilities living in resource-poor settings.
Objectives: The objective of this article was to assess the impact of an inclusive education intervention led by a non-governmental organisation (NGO) on the educational attainment of girls with disabilities in the resource-poor Lakes region of Kenya.
Method: A quasi-experimental design was employed, where the literacy and numeracy educational attainment of the intervention and control groups was compared over two time points a year apart (Time 1 and Time 2; total matched N = 353). During this period, activities pertaining to six core components of a holistic inclusive education model were implemented.
Results: Relative to the control group, girls with disabilities in the intervention group reported a greater increase in literacy and numeracy attainment, adjusted for grade and level of functional difficulty.
Conclusion: Findings suggest that the intervention was successful in engendering additional improvements in the educational attainment of girls with disabilities from the resource-poor Lakes region of Kenya. Results highlight both the applicability of NGO-led interventions in settings, where national implementation of inclusive education is constrained, and the potential of taking such interventions to scale.
African Journal of Disability, Vol 9, 2020
Building on the Salamanca Statement from 1994, the United Nations Sustainability Development Goals 2030 embraces inclusion for children in early childhood education. The European Agency for Special Needs and Inclusive Education in 2015–2017 completed a project on inclusive early childhood education, focusing on structures, processes, and outcomes that ensure a systemic approach to high-quality Inclusive Early Childhood Education (IECE). An ecosystem model of IECE was developed with a self-reflection tool for improving inclusion. This study’s aim was to investigate practitioners’ perspective on the inclusive processes and supportive structures defined in the ecosystem model, to contribute to a deeper understanding of how inclusive practice might be enabled and how barriers for inclusion can be removed. The self-reflection tool was administered in a heterogeneous municipality in Sweden, where inclusive settings are standard. Documentation from approximately 70 teachers on 27 teams was received. The documentation was analysed with qualitative content analysis based on the ecosystem model. The results showed a strong emphasis on group-related processes, whereas data on individual-related processes were scarce. This one-sided focus on the group level might endanger the inclusive processes and outcomes concerning the individual child.
Purpose: Children and adolescents with cerebral palsy often have impaired hand function. This makes it difficult for them to deal with everyday activities. The aim of the study was to explore the experiences of children and adolescents with unilateral spastic cerebral palsy when it comes to learning and dealing with activities requiring bimanual use.
Method: Ten participants, attending mainstream schools, with unilateral spastic cerebral palsy (10–18 years, MACS-level I-III) took part in semi-structured interviews. Qualitative analysis with verbatim transcripts were analysed using a Grounded Theory approach.
Results: The learning of bimanual activities was described as a process taking place in interaction with the dynamics of everyday situations. Five categories describing the participants experiences emerged: “Reaching a point where you want to learn”, “Awareness and acceptance of your own abilities”, “Dealing with the boundaries of the disability”, “Dealing with the impact of people around you” and “Strategies for learning”. A multi-dimensional theory was derived, summarising how the participants learned bimanual activities in daily life.
Conclusions: Children and adolescents with unilateral spastic cerebral palsy express that the process of learning bimanual activities can only take place when it fits in with life as it unfolds. Thus, they have to adapt to a changing context and their own developing skills.
Purpose: To investigate access to basic human rights such as health, a standard of living adequate for health, education, work, marrying and establishing a family, and voting for prosthetic and orthotic users with lower limb disabilities in Malawi.
Materials and methods: A cross-sectional design and a questionnaire were used to collect data from 83 participants.
Results: Most participants reported their overall physical and mental health as good (60 [72%] and 50 [60%], respectively) and said they could access medical care (69 [83%]). Fifty (60%) participants had access to food, 72 (87%) had access to basic water, and 55 (66%) lived in housing adequate for their health. Most participants had studied in school (74 [89%]) but only 27 (33%) of the participants were working. Forty-three (52%) were married and 53 (64%) had children. Seventy-six (92%) participants could vote if they wished.
Conclusions: Rurality and high costs of transport and medication increase the barriers to accessing several basic human rights for people with lower limb physical disabilities. Interventions to target these barriers and increase access to secondary school, employment, and income could improve health equity for people with physical disabilities in Malawi and similar contexts.
Purpose: Translating the Neck Disability Index (NDI) into the Malay language (NDI-M); evaluation of psychometric properties in patients with neck pain.
Methods: The NDI-M was translated according to established guidelines. In the first visit, 120 participants completed the NDI-M, visual analogue scale (VAS) for pain and demographic details. 98 participants returned to complete similar questionnaires and the Global Rating of Change (GRoC) scale. The NDI-M was evaluated for internal consistency, test-retest reliability, content validity, construct validity and responsiveness.
Results: The NDI-M demonstrated excellent internal consistency (Cronbach’s α = 0.84) and good test-retest reliability (ICC2,1 = 0.79). Content validity was confirmed with no floor or ceiling effects. Construct validity was established revealing three-factor subscales explaining 68% of the total variance. The NDI-M showed a moderate correlation with VAS (Rp = 0.49, p < 0.001). Regarding responsiveness, a moderate correlation between NDI-M change scores and VAS change scores was found (Rp = 0.40, p < 0.001). However, there was no significant correlation between NDI-M with GRoC (Rs = 0.11, p = 0.27).
Conclusions: The NDI-M is a reliable and valid tool to measure functional outcomes in patients with neck pain. It is responsive in detecting changes in pain intensity during a patient’s rehabilitation journey.
Purpose: To explore content validity of the ICF core set for Diabetes Mellitus from nurses’ perspective.
Materials and methods: A two-round Delphi study was conducted with nurses specialized in diabetes care, who were recruited by purposive sampling. Level of agreement on relevance of ICF categories was calculated using Item-level Content Validity Index.
Results: Twenty-seven nurses judged 147 second-level ICF categories on relevance for people with Diabetes Mellitus. Agreement was reached on 65 (44.2%) categories, of which 46 were from the ICF core set for Diabetes Mellitus, 17 were from previous validation studies, and two were additional categories that were mentioned as relevant. Forty-six out of the 65categories were derived from the component body functions and structures. No agreement was reached on 82 (55.8%) categories, of which 33 were derived from the component environmental factors.
Conclusions: Content validity of the ICF core set for Diabetes Mellitus was partially supported by specialized nurses. Agreement was predominantly reached on biomedical categories. Content validity of categories derived from environmental factors received little support.
Relevance: The nursing profession should be aware of a gap between the current biomedical focus and the desired biopsychosocial approach; the latter of which is recommended in chronic care.
Objective: To investigate the impact of familial acquired brain injury on children and adult family members, including their views of the support provided, gaps and recommendations for future interventions.
Research design: Qualitative exploratory study using a phenomenological approach.
Method: Twenty-six participants were recruited from 12 families across the South AustralianBrain Injury Rehabilitation Service (SABIRS) and external community brain injury agencies in Adelaide, South Australia. Sixteen children aged 5–18 participated through ten semi-structured interviews. Ten adults attended six interviews. Following transcription and member checking, thematic analyses occurred with pooled data from all interviews undergoing open, axial and selective coding.
Main results: Analyses revealed four main themes: (1) help parents help their children, (2) improve family functioning by giving children meaningful roles, (3) staff: don’t leave children “in the dark,” and (4) support for children is not one size fits all.
Conclusions: Children and adults reported significant gaps in support offered by acute and brain injury services after familial acquired brain injury. Children and adults need to receive intervention in addition to the patient. To fill identified gaps, participants recommended more input by clinical staff including the use of technology; specifically, the development of age-appropriate applications, educational videos and interactive games.
Aim: Participation of adolescents with autism spectrum disorder hardly occurs in settings outside of home and school. Little is known about how their participation is influenced by environmental factors. This study explored how and why adolescents with autism spectrum disorder perceive aspects of their environment as facilitators or barriers to their participation outside of home and school.
Method: This explanatory case study explored the participation experiences of adolescents with autism spectrum disorder (15–21 years) from Zurich and surroundings with in-depth interviews and photo-elicitation, using photos made by the participants during activities outside of home and school. Data was analysed with a 7-step procedure.
Result: The presence of two main themes seemed necessary to facilitate participation outside of home and school: “environmental prerequisites to attend activities”, which consists of five subthemes, such as “the company of trusted persons” and “the provision of knowledge and information”, and “social interchange and engagement”, which consists of three subthemes and describes how actual involvement can be supported.
Conclusion: Our findings highlight the influence of trusted persons on adolescents with autism spectrum disorder, and the need to extend the support network for these adolescents to other individuals, services and society so that their participation in activities can be encouraged.
Background: Persons with disabilities are generally at greater risk of experiencing violence than their peers without a disability. Within the sphere of disability, individuals with severe communication disabilities are particularly vulnerable and have an increased risk of being a victim of abuse or violence and typically turn to their country’s criminal justice system to seek justice. Unfortunately, victims with disabilities are often denied fair and equal treatment before the court. Transformative equality should be pursued when identifying accommodations in court for persons with communication disabilities, as the aim should be to enable such individuals to participate equally in court, without barriers and discrimination.
Objectives: This research aimed to identify court accommodations recommended by legal experts, which could assist individuals with severe communication disabilities in the South African court.
Method: A qualitative design was used to conduct a discussion with a panel of legal experts.
Results: Using Article 13 (Access to Justice) of the Convention on the Rights of Persons with Disabilities (CRPD) as a human rights framework, four themes were identified: equality, accommodations, participation and training of professionals.
Conclusion: Foreign and national law clearly prohibits discrimination against persons with communication disabilities because of their disability and state that they should be given fair and equal access to the court system. For transformative equality to be achieved, certain rules and laws need to be changed to include specific accommodations for persons with communication disabilities so that they may be enabled to participate effectively in court in the criminal justice system.
African Journal of Disability, Vol 9, 2020
Background: Cerebral palsy (CP) is the most common and most complex disabling disorder in children. Newly qualified therapists are expected to manage CP despite feeling inexperienced and inadequately prepared. Short postgraduate practical training courses could potentially help bridge this readiness gap. However, the value of these short courses in addressing the knowledge and experience gap is unknown.
Objectives: To establish the value of a short practical training course on the self-perceived readiness of newly qualified South African trained therapists to work with children with CP.
Method: Secondary analysis of records on therapists’ immediate evaluation of a short practical training course on CP management was completed. The analysis included records from 11 courses collected over a 2-years period (2015–2017). Paired t-tests were used to determine the change in knowledge in the quantitative questionnaire. Qualitative data were analysed inductively to determine themes.
Results: The majority of therapists had their expectations met by the course. Therapists’ self-perceived level of knowledge about various aspects of CP after the course changed significantly. Therapists appreciated the adult teaching and learning methods, conducive learning environment, the relevant and organised content and holistic approach of the course. They demonstrated readiness to adopt positive attitudes, perceptions and practice following the course.
Conclusion: A short practical postgraduate training course in CP is valuable in addressing the self-perceived lack of readiness amongst therapists with little experience in this area. It is capable of improving the knowledge and changing attitudes, perceptions and practice intentions positively, and thereby potentially improving the quality of service offered to children with CP.
African Journal of Disability, Vol 9, 2020
Diversity is a current buzzword in politics, but in the EU, people with disabilities are not achieving the gains made by women and ethnic minorities. This research examined barriers and facilitating factors through a literature review and interviews with politicians and political activists in five European countries. Six categories of barriers and facilitating factors were found: networks, recruitment and mentoring, resources (money, time and energy), the “hierarchy of impairments,” accessibility of political spaces and activities, and laws and policies. Key recommendations include removing access barriers to political participation, from voting to holding office, including physical and procedural barriers in political spaces; ensuring that equalities legislation covers politicians; eliminating barriers imposed by benefits systems; promoting direct support for political activists, candidates and office-holders with disabilities, including access to necessary services and supports; encouraging parties to recruit and mentor disabled people with leadership potential; and considering quotas and job-sharing.
- Not many disabled people are active in politics. In the EU, about 15% of people have an impairment, but only around 1% of politicians do.
- Inclusion at school and in social groups makes it easier to get into political jobs or to try to get elected.
- Some disabled political activists, volunteers, candidates and office-holders don’t get the support they need.
- Political parties can help by finding disabled people, supporting them, and helping them get involved in politics.
- Our article provides several ideas about how to make it easier for disabled people to run for office and work in politics.
This paper describes international actions to collaborate in the assistive technology (AT) arena and provides an update of programmes supporting AT globally.
The World Health Organisation (WHO) identifies the severe global uneven distribution of resources, expertise and extensive unmet need for AT, as well the optimistic substantial capability for innovations and developments in appropriate and sustainable AT design, development and delivery. Systems thinking and market shaping are identified as means to address these challenges and leverage the ingenuity and expertise of AT stakeholders.
This paper is a ‘call to action’, showcasing emerging AT networks as exemplars of a distributed, but integrated mechanism for addressing AT needs globally, and describing the Global Alliance of Assistive Technology Organisations (GAATO) as a vehicle to facilitate this global networking.
Partners in this Global Alliance aim to advance the field of assistive technology by promoting shared research, policy advocacy, educating people and organisations within and outside the field, teaching, training and knowledge transfer by pulling together broad-based membership organisations.
Fostering equity by offering the best education possible to all students is one of the main goals of inclusive schooling. One instrument to implement individualised education is individualised education planning (IEP). IEP requires cooperation between special and regular teachers. From research on school leadership it is known that leadership styles are connected to the way, school leaders use their scope of action with respect to fostering collaboration. However, little is known about the relationship between the leadership of a school, the provision of structures for collaboration, and the implementation of IEP in an inclusive context. The article focuses on the question to what extent transformational (TL) and instructional leadership (IL) are connected to the provision of structures for collaboration and how TL and IL as well as structures for collaboration relate to the implementation of IEP directly and indirectly. Based on data of N = 135 German schools, a path model was calculated. It revealed medium relations between TL, IL, and structures for collaboration as well as a medium effect from structures to collaboration on implementation of IEP. The effect from TL towards implementation of IEP was fully mediated by structures for collaboration, while the effect from IL persisted.
Purpose: To explore the experiences of persons with physical disabilities accessing and using rehabilitation services in Sierra Leone.
Materials and methods: Interviews of 38 individuals with differing physical disabilities in three locations across Sierra Leone. An inductive approach was applied, and qualitative content analysis used.
Results: Participants faced several barriers to accessing and using rehabilitation services. Six themes emerged: The initial and ongoing need for rehabilitation throughout life; challenges with the cost of rehabilitation and transportation to reach rehabilitation services; varied experiences with rehabilitation staff; coming to terms with disability and encountering stigma; the struggles without and opportunities with rehabilitation services; and limited knowledge and availability of rehabilitation services.
Conclusions: There is a continued need to address the barriers associated with the affordability of rehabilitation through the financing of rehabilitation and transportation and exploring low-cost care delivery models. Rehabilitation services, assistive devices, and materials need to be available in existing rehabilitation centres. A national priority list is recommended to improve the availability and coordination of rehabilitation services. Improved knowledge about disability and rehabilitation services in the wider community is needed. Addressing discriminatory health beliefs and the stigma affecting people with disabilities through community interventions and health promotion is recommended.
Background: Stroke in human immunodeficiency virus positive (HIV+) individuals is becoming an increasing concern. Being significantly younger than typical stroke patients, the impact of functional challenges on quality of life and burden on society becomes more eminent.
Objectives: This feasibility study aims to determine the requirements for a large descriptive cohort, to adequately describe the functional outcome of stroke patients with varying HIV status.
Method: All stroke patients meeting the inclusion criteria were recruited over a 6-month period at a South African inpatient rehabilitation centre. Data were collected on admission and discharge using outcome measures including the Barthel Index (BI), Berg Balance Scale (BBS) and the use of assistive devices used to describe independence with activities of daily living (ADL), mobility and safety post-stroke. Statistical analysis was performed using Stata version 14.2.
Results: The feasibility study identified appropriate procedures and barriers to a successful study in addition to describing preliminary data on participant demographics, relevant medical history and functional outcomes post-stroke. Limitations that affected feasibility included minimal recruitment sites, length of data collection period, timely communication of participant discharge plans and dates, and confirmation of participant HIV status. An appropriate comparison between sub-groups could not be made because of disproportionate group sizes, median age differences and no assessor blinding.
Conclusion: To increase generalisability and the understanding of the unique HIV+ stroke profile, multiple recruitment sites, longer data collection periods, assessor blinding and age-matched groups with HIV status confirmation are recommended.
African Journal of Disability, Vol 9, 2020