Global theme 3 Developing sustainable services

The third and final insider global theme is about the context of Uganda. It draws on the specific challenges within health, the health system and the country.

There are two organising themes, “Coordination and infrastructure challenges,” and “Sustainable services.”

Table 4.10 Insider global theme 3. The Ugandan context

Organising theme 1. Coordination and infrastructure challenges The first organising theme is about challenges within Uganda in terms of the way of life for Ugandans, the infrastructure of Uganda as a whole, the

profession of SLT, and challenges experienced by PWCD. These challenges affected insiders and outsiders in their ability to provide services for PWCD.

BT1. Life in Uganda is different and hard

Insiders talked about Uganda being a “developing country” and how many Ugandans live in poverty. The consequences of low income often contributed to problems attending SLT lectures, work or therapy sessions. Bureaucracy was also described by insiders as being different in Uganda and contributing to difficulties. This included the difficulty of establishing an SLT course.

UG14: “we didn't really understand the steps so it took a long long long [time] …and it went on and on and on and it's not just the steps, it it's the personality, a lot of it is just powerbrokering… so it's just doing your homework before you start something like this… find out who are going to be the personalities are going to be the roadblocks in that process in African academics circles there is a lot of egos”

Basic themes Organising themes Global themes

1. Life in Uganda is different and hard 1. Coordination and infrastructure challenges 3. Developing sustainable services 2. Infrastructure 3. Registration of SLT 4. Awareness of CD

1. How SLT emerged 2. Sustainable services 2. Need for services for PWCD

3. Planning and coordination 4. Un/certainty

Other effects of poverty included challenges to outsiders in experiencing a different way of life or relative hardship, as well as the overgeneralisation by outsiders of people living in poverty. Poverty, rural living, and a lack of awareness affected Ugandan PWCDs’ access of SLT services. Services provided by insiders and outsiders were still in limited availability. One insider felt the expansion of services to rural settings was important as rural dwellers are less aware of what support is available, however, insiders expressed their concerns that this situation was unlikely to change in the near future despite personnel increases.

UG3: “um if you are in the rural setting um I must tell you the first person you would get in contact with is the rural health centre and… if you're lucky enough you might find someone who has ideas about existence of SLT services now… You cannot be lucky”

BT2. Infrastructure

Although networks had been formed, insiders found it difficult to keep in contact with other insiders working in the country, and outsiders working locally and abroad, because of the challenges of Ugandan infrastructure. This included difficulties with phone and internet connections as well as transport and education. Difficulties with Ugandan infrastructure often made sharing the support and information challenging even when contacts or services existed. This made contact, such as mentoring, between insiders and outsiders difficult.

UG5: “phone calls it is expensive, then internet you may not say or relay or the messages the way it’s supposed to be”

BT3. Registration of SLT

Insiders discussed the situation of policy and registration of the SLT profession, with a lack of consensus regarding whether or not the profession had been registered by the Ministry of Health. This suggested confusion and concern about the lack of policy and registration. This may indicate challenges in navigating new structures, particularly where these had not been defined, and rather than being supportive, were barriers for practising. One of the

not paid as SLTs. SLTs were paid the same salary as their previous occupation, which often meant SLTs were underpaid, as well as not recognised. As such, many of the insiders described working as an SLT as part-time and undertaking SLT work when they could within their “main” job, or as an additional job. They believed that outsiders’ ability to work was affected by the lack of registration, and at times dissuaded outsiders from working in Uganda.

UG3: “you can get a lot of bureaucratic things which I guess is also everywhere in the world they need to be registered they need to have the practical level they need to be officially admitted and they need to play work permit and blah blah blah! I think that is too much to handle for them… it’s too much for them they would rather do what they came here for”

BT4. Awareness of CD

Insiders discussed how SLT is a new profession in Uganda, and previously there was little someone could do, clinically, about having a CD. Ugandan SLTs explained how they had been previously unaware of the profession and

services for PWCD. Services provided by insiders and outsiders had allowed for change. As awareness of CD increased, this led to improvement to the lives of PWCD.

UG2: “the current situation is that the service the service is evolving rapidly, parents are now bringing out their children out of the homes that is the interesting story”

Despite advances, awareness of CDs remained low. This means that PWCD and carers continued to be stigmatised in Ugandan society. Against this, many SLTs and family members of PWCD were working to see PWCD treated equally.

UG16: “So stop abusing them and undermining them treat them generously…”

UGPWCDI1: “I will say he can do this, and do this. So instead, they are not feeling sorry for him ‘Let me help him’, no, he can help himself.”

Organising theme 2. Sustainable services

The second organising theme in this global theme reflects insiders’ views on the need for sustainable services for PWCD in Uganda.

BT1. How SLT emerged

Some insiders discussed the history and evolution of SLT in Uganda. Challenges of the initial mode of working prevented the development of a sustainable service. Although insiders did not describe the current situation as sustainable, the perceived change in the outsider-led delivery approach was viewed as a move towards sustainability.

UG14: “they had a little service that has been going on for like 10 years when I joined that there was no sustainability strategy um the training was kind of ad hoc I felt “well why don't we developed a diploma or a degree course”

BT2. Need for services for PWCD

There are low levels of awareness of CD and difficulties in accessing SLT services. In seeking help for CD, other services may be used. This includes the church, support groups, traditional healers, other health services or

professionals and educational services. However, insiders feel there is a need to address the lack of services for PWCD with SLT services provided by

insiders and outsiders. A former university programme staff member described the worth of having SLT in terms of empowering other health professionals.

UG15: “it's kind of like you feel helpless but now we know where to refer them [but] I'm not sure that's the same situation most doctors in our country can possess”

BT3. Planning and coordination

This theme describes how there is a need for all stakeholders to plan and coordinate together to enable sustainable services. Insiders discussed feeling

that the NGO supplying SLTs did not have SLT as a priority, despite sending staff over several decades and supporting the development of an SLT programme. They talked about the process of the involvement of the NGO ending prematurely, with some participants describing how they felt their work was not appreciated by the outsider NGO. There was a perceived need for long-term commitment of both the NGO to SLT (which called for the

appreciation of SLT), and the NGO to the insiders. The NGO had agreements with recipient organisations in Uganda that they would support some of the costs of the outsiders. However, the recipient organisation (the university) struggled to meet this agreement. Insiders felt that this damaged the sustainability of services for PWCD.

UG19: “Why did you pull about like this? You are the same people who killed the sustainability”

This also applied to the planning and support from Ugandan organisations and government. Insiders felt the course needed investment, both in terms of increasing the resources, as well as support for admission fees to increase the number of Ugandan student SLTs. Insiders described how — although they needed investment — it was culturally inappropriate to “beg” or ask for money. However if money was offered, it would be gratefully received. Training as an SLT was already seen as a risk in terms of being a new profession, but this was exacerbated for students who had to risk personal finances in paying for course fees. This had led to low numbers of students in some cohorts.

UG13: “we went through six but other three were dropped out before they start the course because it was so expensive and they didn't know that the whole time”

BT4. Un/certainty

This theme is about the future of Ugandan services for PWCD. Insiders discussed their hopes and fears for the profession, challenges and possible solutions. Insiders felt uncertain about the future of SLT in Uganda. Due to the lack of policy and registration for the SLT profession, the associated risks and insecurity mean that some insiders regretted training as SLTs. This also

contributed to the fears among student SLTs that they would struggle to find a job.

UG17: “that's my biggest worry… so [SLT is] not really yet here in

Uganda um getting a job won’t be easy… it will be hectic because people they don't know about speech therapy”

One insider felt that there was a threat of people “masquerading” as SLTs, which would devalue the profession. However, some insiders were optimistic that in the future services for PWCD would improve as a whole. Insiders were also optimistic about the increased numbers of SLTs in Uganda, and felt that support could come from inside Uganda by the government supporting their employment. Some insiders felt that current links with outsider organisations were good for the future, and were also optimistic for further future links. Insiders considered the ways in which insider contributions could be

strengthened to improve services — including both individual and government contributions. Without outsider support, insiders believed they could still work to raise awareness of PWCD and reduce the stigma that they experienced. One Ugandan SLT considered how there were difficulties affecting the SLT

profession globally, not just within Uganda. As such, they hoped collaboration internationally would help strengthen services for PWCD everywhere.

UG5: “I think what you need to do is er I know that speech and language therapy has a lot of very many challenges both in Africa and the rest of the world So I think we need to work as a team we need to share

whatever we have in terms of knowledge skills so that we can fight these challenges together”

4.4.2.4 Summary

In summary, the three global themes explored insiders’ perceptions of outsiders and their contributions to services for PWCD. This resulted in four main

findings. Firstly, insiders viewed outsiders’ contributions as being largely related to the specific roles of outsiders, however variables such as their age, skills and experience were also important. Insiders discussed how outsiders’ roles

practicing SLT; lecturer; trainer; funders; observers, and how these different roles were often linked to different levels of contribution and the “potential to make a difference.” Insiders felt that roles of lecturer or trainer were most needed for sustainable services for PWCD. There was a need for practicing outsider SLTs, however insiders felt that these needed to work in conjunction with the insiders. Some insiders felt that non-visiting or short-term outsiders could be involved through redefining roles. In terms of outsider roles that made little or no contribution, insiders felt both observers and voluntourists fit into this role. Interestingly, there was disagreement among the insiders about the level of outsider skill level needed for outsider roles. There was a split in preference between specialist SLTs and generalist SLTs. Within an educational or training role, it may be that outsiders need specialist knowledge of conditions and interventions. Within a clinical role, that there are specific client groups that require specialist expertise such as cleft lip and palate. Conversely, an outsider SLT may be unlikely to have a specialised client group for their caseload due to challenges in accessing services. Therefore generalist skills may be of greater use. Ultimately a mix of expertise is needed.

Secondly, insiders viewed outsiders as having a higher status, regardless of their skills or experience levels. Insiders described the difference in status between insiders and outsiders. They described how in Uganda, outsiders or “mzungu” were seen as having a higher status. The first SLTs in Uganda were outsiders, and with the development of an SLT programme and CPD training, outsider SLTs were in lecturing or training roles. This has meant that within the profession of SLT, outsiders have generally had a higher status.

Thirdly, insiders viewed outsiders’ contribution as not always culturally appropriate, however insiders would pick and choose from the offerings

available from outsiders. Insiders discussed the cultural differences both within Uganda and between Ugandans and outsiders. Insiders described the

existence of many different ethnic cultures in Uganda, and as such, there were many different cultural rules for groups. Insiders described how this was often challenging for them to navigate. Furthermore, insiders discussed how as a whole, Ugandan culture sought to avoid conflict and confrontation. As part of this, when outsider support was either not culturally appropriate to the culture of

individual insiders, or to Ugandans as a whole, they would not tell the outsiders but instead described how they would “pick” outsiders’ ideas. This included both ideas that were already culturally appropriate (which would be selected instead of other ideas), and those that were not (where the insider would “pick” and adapt the idea for appropriate practice). Insiders described “skill picking” as something they did not share with outsiders.

Fourthly, Insiders viewed outsider support as unstable and transient. Insiders discussed how they and other insiders perceived outsider support. They described how they often knew that the amount of support was time limited, in which case they knew support would come to an end. However, there were typically gaps in between outsider support. Where different individuals or groups of outsiders were involved, the support was often uncoordinated. This caused challenges for outsiders in terms of repetitive training that some insiders felt did not advance their skills (e.g., outsiders often provided training to raise

awareness of CD). However, even when support was planned and coordinated, insiders were aware of support ending prematurely. This happened at both in individual and organisational level. At an individual level, outsiders sometimes had to leave their roles early due to personal issues; at an organisational level with NGO support ending prematurely.

4.4.3. Outsider interview results

Outsider interview results related to the third objective: To describe and explain outsiders’ perceptions and experiences of their contribution to the development of services for PWCD in Uganda. Interview data was also used to provide information for the first objective which was to explore and describe the process and history of development of services for PWCD in Uganda.

In total, nine outsider interviews were completed. Table 4.11 shows the

participants interviewed by outsider role. To maintain anonymity, demographic data are discussed separately from the data in Table 4.11. Of the nine

participants, eight were female, one was male. Where participants gave their ages, these ranged from 36 to 56. Their highest education level ranged from BSc to PhD. Three groups of the initial planned target populations of outsiders

were interviewed: SLTs (who worked in Uganda in clinical roles); SLT mentors (who worked indirectly with Ugandan SLTs); and NGO coordinators. Visting supporting staff involved in the mentoring programme (non-SLTs) were later also included as a target population due to low participant numbers in the groups of NGO coordinators and SLT mentors. In total, 831 minutes of outsider interviews were transcribed.

Table 4.11 Outsider interview participants

The outsider interview data were analysed using thematic network analysis (Attride-Stirling, 2001) to produce themes. 24 basic themes were produced, which were grouped into eight organising themes and four global themes. This section explores the results by the four global themes: “Relationships,”

“Reconciling Ugandan control and outsiders’ expertise,” “Development approaches” and “Embedding services in context.”

Table 4.12 Summary of outsider basic, organising and global themes

Outsiders Target number of

Interviews Interviews completed SLTs 9 5 SLT Mentors of SLT graduates 3 1

NGO coordinators involved in SLT programme

3 1

Visting supporting staff 0 2

Total: 15 9

Basic themes Organising themes Global themes

1. Support networks 1. Building relationships 1. Relationships 2. Being wanted and included

1. Authority 2. Threats and challenges to relationships 2. Relationship breakdown

1. Transition period 1. Idealism and realism 2. Reconciling Ugandan control and outsiders’ expertise 2. Reconciling ideals with concerns

3. Uncertainty about future services for PWCD