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Background: Due to increased life expectancy, just as with the general population, people with intellectual disabilities are experiencing, and dying from, chronic and life-limiting conditions. This has led to an increase in the need for end-of-life care for people with intellectual disabilities. However, there is limited evidence as to what constitutes good end-of-life care from the perspectives of people with intellectual disabilities and their family members.

Methods: The study reported here aimed to nd out the care needs of people with intellectual disabilities at the end of life in Ireland. A grounded theory approach was employed to explore the perspectives of the participants. After obtaining appropriate ethical approval, 19 semi-structured individual interviews were carried out with 11 people with mild and moderate intellectual disabilities and eight family members to collect data which was subsequently analyzed through constant comparative analysis.

Results: The views of the participants suggested that providing personal care while vulnerable and dying, being with and communicating with the dying person, and meeting their spiritual needs, were considered as being essential at the end of life for people with intellectual disabilities.

Conclusion: The fndings from this study have shown that people with intellectual disabilities can engage with those around them and demonstrate how they would like to be cared for, and discuss what would be considered as being good care at the end of life.

Background: Access to healthcare contributes to the attainment of health and is a fundamental human right. People with disabilities are believed to experience widespread poor access to healthcare services, due to inaccessible environments and discriminatory belief systems and attitudes. Qualitative data on these bar- riers has not previously been systematically reviewed. A meta-synthesis was undertaken of qualitative studies exploring the barriers to primary healthcare services experienced by people with disabilities in low- and mid- dle-income countries.

Methods: Six electronic databases were searched for relevant studies from 2000 to 2019. Forty-one eli- gible studies were identified.

Results: Findings suggest that the people with disabilities’ choice to seek healthcare services or not, as well as the quality of intervention provided by primary healthcare providers, are influenced by three types of barriers: cultural beliefs or attitudinal barriers, informational barriers, and practical or logis- tical barriers.

Conclusion: In order to achieve full health coverage at acceptable quality for people with disabilities, it is necessary not only to consider the different barriers, but also their combined effect on people with dis- abilities and their households. It is only then that more nuanced and effective interventions to improve access to primary healthcare, systematically addressing barriers, can be designed and implemented.

This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Nepal?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Nepal. It will be helpful for anyone interested in disability inclusion in Nepal, especially in relation to stigma, employment, education, health, and humanitarian issues. This SITAN has been briefly updated from the April 2019 SITAN.

This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Bangladesh?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Bangladesh. It will be helpful for anyone interested in disability inclusion in Bangladesh, especially in relation to stigma, employment, education, health, and humanitarian issues.

Purpose: 

The aim of this paper was to describe how people living with a neurological disability such as multiple sclerosis, Parkinson’s disease and stroke reason regarding using apps to facilitate self-management in everyday life.

Material and methods: 

A qualitative research approach with a focus group methodology was used. The sample comprised 16 participants, 11 men and 5 women, with an average age of 64 years (ranging from 51–80 years). Six participants were diagnosed with multiple sclerosis, six with Parkinson’s disease and four with stroke. Data were analyzed using thematic analysis, which is a method for identifying, analyzing and reporting patterns.

Results:

 The results formed two themes. The first theme “using apps to have control of my health” comprises two subthemes; “monitor and take responsibility for a healthy lifestyle” and “compensate to facilitate everyday life”. The second theme “using the app as a tool and means for communication” also comprised two subthemes; “dare to trust the app” and “feeling safe when sharing information with health care professionals”.

Conclusions:

 The use of apps put increased responsibility on the person and had the possibility to make them more involved in their own care. The use of an app can facilitate a healthy lifestyle and help to monitor disease-specific symptoms. In order to be able to use apps for communication with the health care sector legislation and safety issues need to be considered.

Purpose: The study aimed to assess the barriers faced by children with disability, both qualitatively and quantitatively, from the perspectives of caregivers and dental practitioners.

Methods: A concurrent mixed method design was used. A sample of 195 dentists and 100 caregivers was selected through convenience sampling. A prevalidated questionnaire was used to assess the barriers faced by the children with disability in their care. Focus group discussions and in-depth interviews were conducted with caregivers. Descriptive statistics were computed using SPSS version 20 and thematic analysis of qualitative data was done using NVivo software.

Results: 195 dentists and 100 caregivers responded to the survey. Majority of practising dentists (83.7%) reported inadequate training in handling children with special needs, while caregivers (38%) reported fear of dentist among the children as major barriers experienced in utilising dental services.

Conclusion and Implications: This study helps to identify the barriers faced by children with special healthcare needs. The findings highlight the need for hands-on training to be incorporated into the dental curriculum. It also suggests that improvements be made in dental clinics to accommodate these children in comfort. Due to limitations of the study, it is suggested that there is a need for further longitudinal studies that involve other family members of children with disability.

Purpose: This literature review aimed to identify the main barriers in access to mainstream healthcare services for people with disabilities.

Method: Online databases were searched for relevant articles published after 2006.  Preference was given to articles pertaining to developing countries. On the basis of pre-determined inclusion and exclusion criteria, 16 articles were selected for the review. Barriers noted in the articles were grouped thematically.

Results: There appeared to be 7 main barriers - 4 related to the demand side i.e., pertaining to the individual seeking healthcare services, and 3 barriers on the supply side i.e., pertaining to healthcare provision. These are: 1) Lack of information; 2) Additional costs of healthcare; 3) Limited mobility; and, on the demand side, 4) Stigmatisation; while on the supply side, 5) Staff attitude; 6) Communication barriers; and, 7) Inaccessible facilities.

Conclusion: To ensure that people with disabilities can successfully access the necessary health services, the barriers on the demand side (the individuals requiring healthcare) as well as the barriers that are part of the healthcare system, should be attended to.

Background: As the South African government re-engineers primary healthcare (PHC), the need for additional information on stakeholders involved in the process has emerged. Of these are community health workers (CHWs), who have been identified as central to PHC success.

Objectives: To profile the current CHWs within KwaDabeka and Clermont in KwaZulu-Natal, to describe their roles and to explore the barriers and enablers influencing their service delivery.

Method: A convergent mixed methods design was employed with a sample of CHWs with the use of a survey (n = 53) and two focus groups (n = 10) and semi-structured interviews with four ward councillors (n = 4). Data were analysed statistically and thematically.

Results: The profile of CHWs reflected only women with a mixed age range and a majority of 59% who had not completed formal schooling. General work experience as a CHW varied. There were diverse opinions expressed towards the CHW role which related to their job title and identity, supervision, remuneration, growth pathways and psychological and emotional issues. Whilst the National Community Health Worker Profile Framework was established for the CHW programme, there are several factors lacking in the current CHW programme such as a formal growth pathway or formal training to align the CHWs with the National Qualifications Framework.

Conclusion: The study findings are essential for the monitoring and evaluation as well as development and refinement of policies that will assist in ensuring adequate rollout of PHC with CHWs.

Background: Primary healthcare (PHC) is central to increased access and transformation in South African healthcare. There is limited literature about services required by occupational therapists in PHC. Despite policy being in place, the implementation of services at grassroots level does not always occur adequately.

Objectives: This study aimed at gaining an understanding of the challenges of being disabled and the services required by occupational therapists (OTs) in rural communities in order to better inform the occupational therapy (OT) training curriculum. 

Method: An exploratory, descriptive qualitative design was implemented using purposive sampling to recruit 23 community healthcare workers from the uGu district. Snowball sampling was used to recruit 37 members of the uGu community, which included people with disability (PWD) and caregivers of PWDs. Audio-recorded focus groups and semi-structured interviews were used to collect data, which were thematically analysed. Ethical approval was obtained from the Biomedical and Research Ethics Committee of the University of KwaZulu-Natal (BE248/14).

Results: Two main themes emerged namely: firstly, the challenges faced by the disabled community and secondly appropriate opportunities for intervention in PHC. A snapshot of the social and physical inaccessibility challenges experienced by the community was created. Challenges included physical and sexual abuse, discrimination and marginalisation. Community-based rehabilitation and ideas for health promotion and prevention were identified as possible strategies for OT intervention.
Conclusion: The understanding of the intervention required by OT in PHC was enhanced through obtaining the views of various stakeholders’ on the role. This study highlighted the gaps in community-based services that OTs should offer in this context.