South African primary health care allied health clinical practice guidelines: the big picture

Additional names were mentioned during interviews, however no new AH clusters were identified from those in our sampling strategy [33]. The sampling approaches allowed us to comprehensively capture “… the core experiences and central, shared dimensions of a setting or phenomenon” (p. 235) [39]. The data saturated in each cluster before we completed the planned interviews.

Thirty-two individuals were approached for interview on AH CPG activity in PHC, and three refused, all for reasons of lack of supervisors’ approval. Subsequently there were 29 participants, of whom 25 provided formal interviews and four contributed to informal notes. All but eight of the participants had AH therapy backgrounds. Of those remaining, four had medical qualifications, one had a pharmacy background, one had a psychology background, and two had nutrition backgrounds (which is a stand-alone PHC area in South Africa (not considered an AH therapy)). Most participants wore more than one professional ‘hat’. These are described in Table 1. Participants are listed by an identification number, and the primary role related to our request for their participation is highlighted by shading. Their other ‘hats’ are noted by the symbol ‘√’. In total, this sample represented 59 ‘hats’ (29 being the primary reason the participant had been invited to participate in the study, and 30 additional ‘hats’). The views and experiences of this multi-faceted sample underpinned their rich insights into AH PHC CPG activities, and provided inbuilt validation of findings within, and between clusters.

Podiatry was significantly under-represented compared with the other three AH therapy disciplines. This reflected its presence largely only in one province, and the small number of practitioners found in private and public settings. At present, there is only one podiatry training school in South Africa, and thus the effectiveness and reach of podiatry in SA PHC is yet to be fully explored.

We also found informal, volunteer, vibrant multidisciplinary and cross-sector groups such as Disability Action Research Team (DART), the Rural Health Advocacy Group and Rural Rehabilitation South Africa (RuReSA). Membership was from academia, professional associations, all levels of government and the private sector. These groups were faced with the needs-based immediate challenges of leading best practice service delivery, and providing AH services in underfunded PHC settings dealing with patients with huge disability need across the lifespan.

‘Lots of questions still unanswered, like why isn’t community based rehabilitation part of a strategy in South Africa, why isn’t it funded and resourced’.

These groups provided informal support networks and fostered the activities of individuals with interests in AH CPGs. They developed innovative ways of working with scant resources, and often developed clever guidance documents to support practitioners working in isolation in challenging clinical environments. Whilst they called them CPGs, none of the ones cited complied with international best-practice in construction or presentation [2‐4].

‘Now the CPGs that we were developing are different from the Government policy documents, we need that type of thing to include research analysis and look for clinical reasoning and evidence to come up with those clinical guidelines’.

AH clinicians working in policy, planning and service delivery management positions in Government reported retaining their AH ‘clinical lens’ when shaping, organising and implementing services, even for conditions that did not require AH care (such as HIV and TB). These people were critical in ensuring an AH voice at the table, during funding and service delivery discussions.

‘I do strategic stuff around PHC but because I come from a rehab background I try to ensure that those flavours always came into the work and it was also... I worked mostly with doctors so trying to sensitize them around the value of what the allied health professionals offer and how it can make a difference in terms of thinking about the bigger health system’

AH clinicians working as managers at Department of Health Provincial district and subdistrict levels were keenly aware of the need to optimise the value and outcome of AH contacts with every patient. They were adroit at supporting service substitution (different AH clinicians substituted for each other) in the absence of providers from other AH disciplines. Community-based health promotion, chronic disease self-management and sustainable community initiatives that supported individuals to improve function once therapy sessions were completed were commonly discussed and implemented, despite lack of guidance as to how to do it, and resource constraints. Trial programs of what was considered to be ‘best practice’ service delivery were identified during discussions, although these were mostly conducted on shoe-string budgets and voluntary goodwill, and were rarely evaluated, or sustained after the initial trial period.

‘I know I can go to colleagues and ask for help to run a pilot program, with only a bit of money from savings, and everyone just jumps in and does it, but the money and goodwill run out, and we don’t have anything sustainable’

Directives for practice largely came from the National Department of Health (NDoH) in the public sector, and compensable bodies (insurers) in the private sector. These directives were sent to provincial Department of Health (DoH) or professional associations respectively, for action. When we sighted ‘guidelines’ produced by Government, they were more in the form of policy, directives, circulars or aspirational statements. They related to meeting national or provincial service delivery targets or achieving broad health outcomes (such as Millennium Development Goals), rather than the implementation of evidence-based care.

‘one of the biggest challenges is that at National the focus is on policy issues, and provinces and districts the focus is on implementation’

Mostly what we viewed were purpose-built decision-making tools, or directives, aimed to meeting end-user needs, few with an evidence-base. This approach reflected an urgent need to address a problem, the time available, knowledge about CPGs, and recognition of the needs of end-users.

‘the best practice statements or protocols are developed ad hoc It’s more like recommendations. It’s not do this, do this. It’s more we have found this worked and then kind of highlighting what it is that the findings or tools were used. How the tools were used. Who used the tools and on whom the tools are being used and probably that is kind of what we share with one another but there are conversations around so I am using this and then next month so we decide okay we’re all going to try this out but next time we meet you may have found that you know what it’s not really working for me. So we try and include the variations as well but it really is very informal at this stage.’

Another participant indicated that:

‘there was no literature review done, there was no audit done of the provinces, what was going on in the provinces, so the document that I developed which is a lot to do with the prevention of disability and a lot to do with PHC and what needs to be done for rehab to be relevant to actually meet those goals of prevention, it can’t be done without knowing what is available and what human resources are available at the provincial level.

The purpose of CPG activities in AH PHC was unclear. Participants’ answers reflected a range of different and often complex situations for which guidance was required, who asked for guidance, where the answers could be found, and by whom, and what answers could be provided in what circumstances. Rather than summaries of best research evidence for specific tasks, guidance was mostly about service delivery (who should undertake tasks, with what training, under what circumstances, with what equipment, how often, for how long, and with what supervision). There was a broad recognition that service delivery information should be coupled with best current management evidence so that purchasers (governments, insurers) could determine the best ways to spend scarce available resources, but there was no clear understanding about how this information could be produced.

‘You have limited resources you can’t cover all the areas that you want to cover. We have a skewed situation, you know, in terms of distribution in South Africa where our metropolitan areas … ideally you know is staffed well but when you go out into remote areas you find very limited and sometimes even no presence. So, so that’s one of the big key things. The other thing is as much as people would want to provide a comprehensive service, we, we still face, you know, challenges with providing the necessary equipment’.

Another participant indicated that guidance were more about regulating funding and purchasing rather than clinical judgement and evidence.

‘We do not develop anything clinical in terms of guidelines to tell practitioners how to practice, ever. All our policies and “guidelines” are directed at how we would fund’.

Participants acknowledged that research evidence was important. However whilst we heard about attempts to use research evidence to answer questions, we also heard about frustration with the available AH evidence base in terms of its limitations, and the need to adapt or contextualise it to local situations. Moreover, engagement of ‘experts’ (academics in particular) on Government advice panels or fora seemed to be underpinned by an assumption that they brought the research knowledge with them (rather than using independent robust evidence reviews to answer clinical questions).

We have what is called the Provincial CPG Committees, for example we have got one around child health. So you know you have a group of clinicians that sit together and they develop CPGs, let say, for a specific health condition.

‘You assume that a group of experts will know all the background evidence, we don’t have time or the need to look any further for it’.

‘They get a group of experts which we do have in this country on various subjects who are internationally renowned …… to participate in the Advisory Board. Where (the evidence) was seen to be obvious that it was common to South Africa those parts, I think, were glossed over and we summarised those but we had specific interest which were relevant to our population’.

AH services were delivered in PHC settings either as single therapy disciplines or as multidisciplinary practices. In the private sector, the most common form of service delivery was single disciplines, a service approach reinforced by medical aids rebates. However in the public sector, we heard about the significant focus on rehabilitation, particularly at the coal face of PHC, the community, in the area of disability management and rehabilitation.

Sound statistics on South African disability prevalence are lacking, although it is widely recognised that disability significantly constrains individual, community, provincial and national productivity)⁴⁷. Participants talked about their frustration in not having the impact of disability noticed at National and Provincial government. The main reason for this was generally believed to be that disability paled into insignificance in the face of the ongoing fatal burden of diseases such as TB, HIV and childhood illness. Disability was the largely unmentioned and unnoticed burden that was carried by individuals, their families and their communities, with treatment variably provided, by an inadequate workforce, with ad hoc programs, and short-term project funding from NGOs, district and subdistrict pilot studies, and community engagement. Disability and chronic disease was reported as occurring across the lifespan, from children born with cerebral palsy, spinal deformities or foetal alcohol syndrome, through to acquired injuries from motor vehicle or workplace accidents, or violence, through to age- or disease related disability from stroke, falls or the legacy of HIV or TB. In a country where saving lives has the measure of health success [22, 25, 26, 28, 29], optimising quality of life, function and productivity has been of far less interest and value. However we heard of the significant burden of disability, and how with individual, family and community-empowerment, inexpensive AH interventions to improve strength, balance, and motor control, disabled individuals could be assisted to become productive members of their community.

‘from the disability side there is a big thing about accessibility and, and we still need to somehow convince our architects that it’s better to incorporate in vessel design when you start off but they, they tend to think that you’re adding unnecessary expenses and we have new buildings that are, that are built now in the twenty-first century that are not universally accessible. So, so, it’s, it’s everything that is seen as an optional aspect it’s relegated to the bottom of the priority list you see and, and quality of life it is seen in that way’.

Consequently, at National and provincial Government levels, we heard how AH was not perceived as an important player in the quest to effectively manage the current priority PHC conditions.

‘Allied health has little role in the important areas that we need to fund in PHC at the moment. They don’t save lives’

Rehabilitation to attain optimum function and quality of life was universally acknowledged as essential in SA PHC, but there was also acknowledgement that the role of AH in assisting with this was poorly recognised at National Government level. This was at odds with the urgent on-the-ground need to deal with the tsunami of disability and chronic disease burden in the PHC sector, now that increasing lives are being saved from previously-fatal diseases such as HIV and TB.

‘Do we put a value on quality of life or do we put a value on saving life? So, so, I mean, things that should not be mutually exclusive because you need both. You need to save a life but when you have saved it you need that life to lead you know a decent life after that. So, so putting a value on quality of life is tricky’

We heard about situations where significant efforts had been made in AH working parties (comprising clinicians, academics and province managers working largely voluntarily), to develop frameworks and guidance for best practice service delivery and quality care, only to have these efforts dismissed and ‘watered down’ in policy documents, because of the lack of focus at government level on AH PHC services (now, and in the future).

‘we put such a lot of effort into making clear statements of what we needed to make rehab work in communities, and when the policy came down, it was, like, so watered down, it meant nothing’

At all levels of government we heard time and again of the muted AH voice in making local service delivery and resource allocation decisions. We heard stories about lack of funding for training and future workforce planning, resource constraints on AH services (not enough AH staff, not enough experienced supervision at point of contact with patients, difficulty in managing huge workloads, large waiting lists), and lack of guidance about best practice, effective care that could assist in reducing waiting lists and engaging patients in their own care. Despite this, there was a perception of hope that things would and could change. By drawing on vibrant discipline-specific and multidisciplinary AH groups which aimed for excellence, despite resource limitations, lack of guidance regarding best practice, changing political agendas and lack of recognition of the value AH in the current PHC system, the importance of a concerted, evidence-based national and provincial agenda for PHC AH activities in South Africa would be recognised.

‘I have seen a lot of development from an era where Allied Health Rehabilitation was never part of the narrative, it wasn’t there. It didn’t appear anywhere. It didn’t appear in policy documents, it didn’t appear you know in discussion. It didn’t feature anywhere to an era where the complaint is we’re not taken too seriously enough. At least we are featuring you see. So from an era where we didn’t feature to an era where you feature but the challenge is the priority is not, is still not enough’