Exploring the opportunities for improving the accessibility of rehabilitation services in rural communities in Uganda through the inclusion of CBR graduates at the primary health care level

Goal

The overall goal is to improve the accessibility of rehabilitation services in rural Uganda.

Study Design

This study uses a qualitative study design and a case study approach (Yin, 2009) for an in-depth, multi-faceted exploration of the complex issues of CBR integration in primary health settings. It examines CBR implementation across varied contexts and allows for potentially more robust and generalisable findings. The research adopts a critical epistemology, which examines existing structures and barriers that affect rehabilitation service delivery. Through this lens, the study investigates the perceptions and experiences of CBR graduates and AHPs about CBR practices and the potential for CBR inclusion into primary health care in Uganda.

Data Collection

Literature review and key informant interviews (KIIs) constitute the main sources of data collection for this study. We started the study with a comprehensive review of existing literature on CBR in sub-Saharan Africa using relevant scholarly articles, books, reports, and other sources. Inclusion and exclusion criteria were applied to filter and select literature matching the research objectives (see Figure 2). Full-text research articles from 2008 to 2023, available in English and focused on sub-Saharan Africa and CBR programmes or training, were sourced from PubMed, Google Scholar, and MEDLINE, along with literature from reference lists and websites like WHO and World Bank, National Ministries, and NGOs. The literature search used keywords with Boolean and MeSH terms: community-based rehabilitation, community rehabilitation worker, community rehabilitation facilitator, low-income country, low-resource setting, Uganda, South Africa, Southern Africa, disability, human resources for health, and task-shifting. Relevant data were reviewed and extracted, identifying patterns, themes, and gaps in existing research. (PRISMA see Annexure 1).

Data from the review was supplemented by KIIs. A semi-structured interview guide was used to collect data from KIIs. The interview guide was designed based on the findings from the literature review, the CBR Matrix, and the researcher’s experience (Available as Annex 2). The guide ensured interviews remained focused on specific subject areas (Irvine, 2012). Interviews were conducted via Zoom or in person and audio-recorded with participant consent. Semi-structured interviews lasted between 30 and 90 minutes and were conducted between May and July 2023.

Data Analysis

All interviews were transcribed verbatim using Otter AI and checked for completeness and accuracy by the researcher. Following Braun and Clarke’s 6-step process (Nowell et al., 2017; Braun & Clarke, 2006), thematic analysis was used to examine and interpret data. Respondents were given unique IDs based on their affiliations to maintain anonymity.

Ethical Considerations

Ethical approval was obtained from Queen Mary University, London, and Makerere University School of Public Health, Uganda (SPH-2023-445).

Theme 1 – Scope of Work

All participants were familiar with the CBR courses and recognised the importance of holistic care for vulnerable communities. They agreed that CBR workers are well-suited for a role in the primary healthcare team to provide holistic treatment for vulnerable, hard-to-reach communities due to their training in poverty reduction, disability awareness, stigma reduction, and empowerment strategies. AHPs stated that, as specialists, they often focus more on the individual and medical perspectives, overlooking the broader issues that a CBR graduate may consider. The breadth of impact was also mirrored in the literature review.

”…benefits to [CBR] programme participation include physical rehabilitation, education of in-home caregivers around physical rehabilitation, emotional support and counselling, access to resources and assistive devices and increased integration into the local communities” (Dawad & Jobson, 2011).

CBR graduates were noted for their deep understanding of local communities and cultures. AHPs recommended local recruitment of CBR graduates to a primary health team to facilitate access and engagement and support home programmes.

”With the concept of inclusion and CBR, I think it would be the perfect gap to fill because you are an expert in disability, but also an inclusion expert, meaning you’re leaving no one behind; those with and without disability are the vulnerable groups, even those who are not vulnerable need interventions.” – CBR03.

However, there was some confusion among Ugandan participants about CBR graduates’ scope of work and responsibilities, which, with similarities to social workers, caused uncertainty. The literature revealed variations in CBR worker terminology, duties, payment, and training duration in South Africa, leading to confusion among healthcare workers. Some were paid, others were not. Some had received only a few training days, while others had received one or two years. However, the descriptions of their roles and responsibilities overlapped and generally included awareness creation, community engagement and home-based therapy services. This variation confused other healthcare workers as well:

”When doing my first internship, I called myself CBR Doctor. Can you believe it? What does that go to show? I did not know what I was doing……. If you surveyed Kyambogo graduates right now and asked, “What are you professionally?” less than half will tell you they are rehabilitation officers, or their job is in rehabilitation. They will tell you they’re CBR workers, CBR doctors, CBR practitioners, and even the understanding of CBR workers is quite hard” – CBR03.

Interestingly, new graduate medical and allied health professionals in South Africa provide mandatory community and rural services to strengthen the public health system and motivate people to give back, thereby replacing the CBR worker model of volunteer community health workers delivering general health and rehabilitation care. Since 2004, there has been a preference to train profession-specific therapy assistants (physio, occupational and speech therapy, etc.) rather than generic rehabilitation workers whose skills crosscut the professions and include community development. However, these methods are marked with shortcomings like a lack of focus on holistic care and continuity in care, as identified by Binken et al. in 2009: ”While these new therapy assistants are competent in implementing rehabilitation programmes, they cannot offer the holistic care that CBR encourages to empower communities to assume responsibility for their health and well-being by collectively addressing the social determinants of health.”

”Rural locations are not popular choices, and you don’t have permanent therapists there, so there is no continuity of services. Every year, someone leaves, and another comes, with no overlap or proper handover……. This is why we trained our CBR workers to fill the gaps and provide ongoing care” – IMP01.

Theme 2 – Skills Development and Training

This theme expanded on the roles of CBR graduates in Uganda and the training they receive. CBR alums, AHPs and COMBRA trainers felt that the current BSc Course was overly theoretical, leaving graduates with insufficient practical skills to implement knowledge effectively. All participants were concerned about this lack of practical experience, while all implementers and AHPs emphasised that ongoing training was also essential. Participants recommended one year of theory and more practical application for the remaining two years. This matches van Leeuwenhoekweg’s (2019) Essential Standards study, which identified the core skills CBR workers need for practical rehabilitation activities and training families to support PWDs, while Blose et al. (2021) noted: ”Continual promotion of, as well as training and education on, CBR for healthcare professionals was imperative for the successful development and roll-out of CBR programmes in South African communities.”

”They are being taught about these children [CWDs] theoretically, and some confess they have never seen a child with cerebral palsy or Downs Syndrome in that training, it’s just book work …… they see what it looks like, the symptoms, but practically, they have no experience” – AHP01.

The data also showed that graduates with basic therapy skills could increase access to rehabilitation services under AHP supervision to reduce the burden of the health workforce crisis, particularly in low-resource settings. This widely observed lack of practical experience could be attributable to the BSc graduates’ limited fieldwork, totalling 12 weeks spread across two semesters. COMBRA alums, on the other hand, are already working in the community development sector and enrol to expand their knowledge.

One CBR graduate shared his fieldwork experience with a local government office, where he had no one to mentor him. He believes he would have gained greater experience and learning opportunities within civil society, as the local government does not have adequate structure or defined positions for CBR workers.

”At university, there is a lot of theory. Our only practical sessions are sign language, braille, inclusive sports, and making assistive devices……. So, for the rest of the knowledge, I think I was blessed that I was an evening student and could get practical experience during the day [working with an NGO]”. – CBR01

Where there is no such BSc programme, NGOs in Tanzania and South Africa have taken it upon themselves to teach CBR graduates:

”We target people already working in communities. We focus on developing that knowledge and skills further, how to engage communities, and how to focus on community problems. Our students do four weeks of practical work back in the communities to apply the knowledge they have learned” – TRA01.

These informal trainings are much shorter but focus on practical skills critical to local communities. This training includes information on medical conditions and disability types and conducting basic assessments and needs evaluations. The importance of ongoing training was stressed by all implementers and AHPs as well:

”That is what we have learned with our projects, especially when you work with people who don’t have a scientific or medical background. You can do theoretical training but must follow up with a mentored practical application. It really helps with the understanding” – IMP02.

AHPs recognise the need to empower lower-level health workers in the primary health care team. They believed that they were well placed in teaching CBR graduates the necessary clinical skills, and once mastered, they would be a valuable addition to the rehabilitation team, able to reach a larger number of beneficiaries and provide additional interventions to ease therapy workloads and support families:

”Sometimes I see a child only once a month……I would love to see them more frequently, but it’s impossible with the area we cover and the workload. If we could have CBR workers who can visit the family twice a month and complement or supplement my visits, that would help……. I could share knowledge on what I do as we work together and follow up monthly” – AHP02.

Theme 3 – Professional Considerations

There were strong feelings amongst all Ugandan participants that professional regulation of CBR graduates should be under the Ministry of Health (MOH) rather than the Ministry of Gender, Labour and Social Development (MGLSD). The departments need to work more closely together to adopt a human-rights approach that crosscuts ministerial boundaries. The MGLSD also recommends moving leadership, coordination, implementation monitoring and evaluation to an oversight office, such as the Office of the President, to support the social and political changes rather than remain segregated in various ministries (2020).

”The Minister of Gender, Labour and Social Development is best placed in terms of social service provision …. But I would look at strengthening the disability desk in the Ministry of Health. And this desk would make it easier to integrate CBR and create a more holistic approach.” – CBR03.

Most participants expressed the need for a separate professional association, mentorship, supervision, and registration for professional oversight and accountability. When asked if CBR graduates posed a threat to their professional identity, AHPs believed this was unlikely. Nonetheless, they were concerned about impersonation or liability for harm:

”I wouldn’t want to say that it poses a threat if we have clear guidelines. Everyone knows their boundaries…. Someone may get equipped with certain skills and wants to impersonate and assume that now they are a physiotherapist and advertises …. if there are clear guidelines, we can prevent [it]” – AHP02.

Theme 4 – Barriers to Policy Implementation

CBR graduates and AHPs discussed integrating CBR graduates into the health system to address health workforce shortages, particularly in rural areas. They emphasised stakeholder involvement and policy identification. Ugandan participants suggested including CBR graduates within the primary health teams at parish-level Health Centre IIIs, mentored and supervised by AHPs in District or Regional hospitals.

”Social service provision should go lower to the people…… It’s strongly recommended that CBR graduates be at the Health Centre III level. Unfortunately, we face cases of nurses not being available at that level. Then, the Minister of Health looks at nurses at a higher standard than CBR graduates” – CBR03.

”We should have CBR graduates at least in every Health Centre III level [sic]” – CBR04.

”We have six [CBR graduates] in total; they are divided into different villages. One can cover three or four villages” – IMP04.

CBR graduates and AHPs deemed the current Ugandan community health structure, Village Health Teams (VHTs) are inadequate in addressing rehabilitation needs. Concerns included education and training levels and frustration with the Ministry of Health’s reliance on VHTs as a substitute for CBR, which was seen as a lack of professional recognition.

”The VHTs, I don’t think that we should use them much for doing therapy exercises, etc., because their training, if we are comparing with a CBR graduate, is a bit low. First, I would have to invest in a lot of training. CBR graduates already have that knowledge; there is something to build on” – AHP03.

Other implementation barriers include the government’s approach to rehabilitation services and the lack of progress in incorporating adopted policies into national and district budgets and development plans. The first Disability and Rehabilitation Strategic Plan is still in draft form but will give direction on the distribution of human resources to government-aided facilities for service delivery, including community-based rehabilitation. However, participants felt rehabilitation is not prioritised in current development plans due to poor planning, budgeting, delivery, and evaluation.

”When we have an official supporting document signed off by the Government of Uganda advocating that we need to have these people hired, it will be up to the availability of resources. Also, engagement with the local governments to advocate for them to hire these personnel in their various district hospitals or health centre fours” – MOH01

”I think the [HRH] gap in the country is not due to few physios or rehabilitation workers who have been trained. Even the ones that are available are being underutilised because of government policies. It gives me a feeling that these people [government officials] are unaware of rehabilitation and don’t consider it important in the health sector” – AHP02.