The process and history of services for PWCD in Uganda

The process and history of services for PWCD in Uganda was addressed by the first research objective: to explore and describe the process and history of development of services for PWCD in Uganda. This objective was met by data from the document analysis and the two sets of interview data to produce five findings. The document analysis revealed three findings, one from each category:

1. From C1: Although there are improved and increased services for PWCD in Uganda, PWCD still face challenges in their everyday lives. 2. From C2: SLT roles for insiders have developed over time with similarities and differences to outsider roles.

3. From C3: Services for PWCD have been developed in multiple ways by insiders and outsiders.

One finding was produced from both the insider and outsider thematic networks relevant to this research objective.

4. From insider GT3: Services have developed over time, with greater planning and coordination in recent years with the aim of sustainability. 5. From outsider GT2 and GT4: Services have developed, however there are a number of challenges that prevent or threaten development.

Research objective Data used

1) To explore and describe the process and history of the development of services for PWCD in Uganda.

• Document analysis • Outsider interview • Insider interview 2) To describe and explain insiders’ perceptions and experiences

of the contributions of outsiders and outsider support, to the development of services for PWCD in Uganda.

• Insider interviews

3) To describe and explain outsiders’ perceptions and

experiences of their contribution to the development of services for PWCD in Uganda.

• Outsider interviews

4) To analyse and interpret insider/outsider collaboration and working practices.

• Participant observation

Documenting the historical medical administration in Uganda, Beck (1970) rejected the idea of history repeating itself, claiming that early healthcare challenges were unique to the specific context of their time. Surprisingly, from this perspective, there are still notable similarities between early medical

outsiders and current outsiders involved in Ugandan SLT services — including a lack of research or evidence base, low numbers of trained personnel, and

anxieties about service sustainability (Beck, 1970). These similarities suggest that changes (either in outsider approaches or in Ugandan context) have not been sufficient to avoid historical comparison.

Complementary findings from document analysis and interviews confirms that the main outsider NGO responsible for the SLT in Uganda began working in 1986. Interestingly, there is some indication of Ugandan SLT existing earlier, as one outsider noted the national hospital (built in 1962 (White, 2000)) had a room labelled “speech and language therapy.” While it is possible that the hospital — built as a “gift” from Britain but paid for by Uganda (Naggaga, 2017) — was initially intended to provide SLT, a lack of additional evidence may suggest the room-labelling reflected outsiders’ health concerns and was never implemented by Ugandan insiders.

The SLT degree programme was viewed in documents and interviews as a means to sustainably develop services for PWCD. There were, however,

discrepancies regarding the timeline of the SLT programme. Documents cited a start date of 2008; interviews from insiders and outsiders described a start date of 2007. This discrepancy extended to the first graduating cohort of SLTs, which was cited as either 2011 or 2012. Documents and interviews revealed an eight- year development period from course-conception to the first cohort of students, which some outsiders perceived as too long and considered to be an effect of the Majority World context. Insiders and outsiders perceived bureaucracy as a challenge in developing and implementing the programme.

There was varying agreement regarding the outsider NGO’s involvement in developing the SLT course. Though all insiders and outsiders agreed the NGO’s involvement ended earlier than planned, they disagreed over why this

outsider-led SLT training course ended due to financial reasons after only one cohort of 18 students graduated in Zambia (Beneke, 2016). Partnerships may eventually come to an end, but planning and dealing with transitions is

essential. Nganwa et al. (2013) described how links between services for people with disabilities typically broke down after projects ended. Pfeiffer et al. (2008) argued that NGOs should adopt a code of conduct to minimise

challenges and service collapse. This was published prior to the withdrawal in Uganda, and apparently not taken into account. The SLT programme continues to run, however both insiders and outsiders had concerns about the readiness for insiders to lead the programme. Many respondents expressed concerns about the quality of the education provided. Some drew parallels to an

occupational therapy degree programme which followed a similar trajectory in terms of outsiders starting a course then leaving and reducing their

involvement.

Insiders and outsiders described challenges in registering SLT as a profession with the appropriate Ugandan government Ministry. There was disagreement about whether this had been achieved. Regardless, only a small number of the Ugandan graduates were working full-time as SLTs. Many worked part-time or in their prior job posts, incorporating SLT where possible. Some left Uganda to work abroad (returning to their home countries if sponsored). Rizvi (2006) recommended guaranteeing job posts to reduce “brain drain.” Doing so in

Uganda could minimise numbers of SLT leaving, as well as offering security and safety to SLTs already practising in Uganda under the title of their old posts. An active SLT association was believed to be one way of allowing SLTs to

coordinate with the relevant stakeholders to register SLT as a profession and secure job posts.

Concurrent with service development at the university and national hospital, many insiders and outsiders were involved in other aspects of services for PWCD. This included buying-in or recruiting volunteer outsider SLTs to develop small therapeutic services, to work in schools, or to work privately with insiders’ children. In spite of these approaches, document analysis and interviews still showed the majority of PWCD had not benefitted from SLT. This may be

not the most appropriate, or urgent need for PWCD in Uganda. From the insider interviews and document analysis, PWCD and parents of PWCD did want SLT services, but they also wanted practical rights such as schooling, job

opportunities, independence, reduced stigma, and the opportunity to contribute to the Ugandan economy. This is supported by findings in Minority World

countries from Wickenden (2011), who found that PWCD were more concerned with issues of independence and society, compared to specific intervention from SLT. For the future, insiders and outsiders wanted increased services and improved training opportunities for SLT, as well as inclusion of PWCD within society. Insiders and outsiders believed the service existed to meet the needs of PWCD. As service users, the needs of PWCD should be the primary concern — with SLTs facilitating discussion or campaigning for other services and rights.