Background

The importance of providing good standards of care for persons with intellectual disability (ID) is increasingly recognized [1, 2]. The publication of a growing number of evidence-based studies and recommendations of good practice, such as the guidelines of the National Institute for Clinical Excellence (NICE), when working with families of people with ID and behavior that challenges, marks the maturity of family and caregiving research in the field of ID. The NICE system is used in the United Kingdom, and guidelines are drawn up using the best available evidence for what has been shown to work in a range of health-related fields [3]. The National Institute for Clinical Excellence has also published guidelines on the prevention, assessment and management of mental health problems among those with ID [4]. Both these guidelines highlight the need to provide family interventions if a person presents with behavior that challenges [3, 4]; in the field of ID in general, best practice suggests involving families and community resources in all aspects of care [5]. The NICE system is not the only set of guidelines available. For example, the Health Equalities Framework is based on an understanding of the inequality of health care access for populations with ID, and measures outcomes across different health indicators which include behaviors that place a person or their carers at risk [6]. A comprehensive analysis of available research on intellectual disability and behavior that challenges has recently been published, specifically insofar as the research findings inform good social work practice [7]. In this article, we focus on the NICE Guideline 11 on behavior that challenges as an example of good clinical practice, firstly because they are comprehensive and well-regarded, and secondly, because these guidelines are widely read and referred to in health service practice in South Africa, where we work.

Ideally, all guidelines should be applied contextually, and it is well established that there may be barriers to the full application of guidelines even in well-resourced contexts [2, 8]. The NICE guideline on the management of behavior that challenges is explicit in its requirements of a contextual understanding of the organizational design and family environments of service-users before individualized interventions are implemented [3]. In clinical practice, it does not make sense to apply guidelines which depend on evidence that does not apply in a particular context. For example, it is incongruent to recommend MRI as a diagnostic tool in countries where there are no MRI machines. The NICE Guidelines are designed for use in the UK, a country in which there are certain standards of care within the health system, as well as expectations regarding how the country context operates. The UK is a stable, industrialized country with a health system which, despite shortcomings, functions efficiently. Were social and economic conditions in the UK greatly different, the NICE Guidelines would reflect that contextual difference in the scope and range of response.

Most families of persons with ID live in low- and middle-income countries, commonly in conditions of poverty [9]. Social and health systems in these countries may vary considerably from highly resources countries, such as the UK or Australia, for a wide range of reasons, including a lack of resources [8, 10]. Ideally, guidelines should be developed for care in poorly resourced contexts, and there have been developments in the global health field which have taken these inequities into account. There is an expanding literature on the use of community health workers in low-income contexts, and in what has been called task shifting or task sharing – some care tasks and interventions which would usually be undertaken by relatively highly paid specialist personnel have been shown to be effectively delivered by less qualified personnel and family members [11, 12]. These interventions may include supporting families of people with ID and linking these families to available community supports outside the formal health system. Countries which cannot afford high-cost care are generally not in a position to fund the research from which to develop optimal local practice guidelines.

The scarcity of well-designed studies which measure the efficacy and contextual-embeddedness of evidence-based treatments in low- and middle-income countries is well-documented [13]. A recent scoping review by the authors likewise pointed to a paucity of rigorous South African research to measure the effectiveness of mental health interventions for children and adults who have ID [14]. In the context of ID research, recent literature reviews have likewise found a paucity of strong evidence in family research that has focused on the delivery of interventions for children and adolescents in low- and middle-income countries [9, 11, 15].

The dearth of strong empirical evidence that attests to the efficacy of family interventions for people with ID creates a dilemma for clinicians in low- and middle-income countries. On the one hand, well-crafted guidelines have much to offer, but on the other, these guidelines may often be contextually inappropriate or not amenable to extrapolation due to other factors. Very little is known about how clinicians deal with this difficulty under real-world conditions, and after researching the ID literature we have not found any articles reporting on how ID mental health family intervention guidelines are adapted in local contexts in low- and middle-income countries. We, as clinicians and researchers, are serious about the wellbeing of persons with ID and their families globally, and it is important to explore and debate the adaptations made to knowledge and guidelines which come from wealthier countries, in lower income contexts. Given these considerations, the aim of this article is to explore the contextual application of an established set of guidelines – in this case the NICE Guideline 11 as discussed above – in a much lower-resourced context.

Methods

In order to provide a first step in what we believe needs to be a larger conversation about the application of research evidence to clinical practice in majority world contexts, we report here on local South African practice which we have built up in relation to the NICE Guidelines on family support in the context of persons who have ID and behavior that challenges. The practice on which we report has been built by a team of psychologists in Cape Town, the capital of the Western Cape Province of South Africa, which is a relatively well-resourced context for low- and middle-income countries. The Western Cape Province has a population of approximately 6,510,300 [16, 17]. There are no good estimates of rates of ID in this province based in robust epidemiological data [10]. Assuming a population rate of ID at approximately 3%, a figure cited by Kleintjes et al. [18], we might expect the population of people in the province with ID to be approximately 195,000. There are six psychologists employed in state ID mental health services in the province, as we discuss below. This yields a ratio of psychologist to ID population of approximately 1:33,000.

However, we believe that the principles we use are transferrable to even less resourced contexts (including contexts in which there is no dedicated psychological service). Two of the authors (OC and CC) are members of that team, and another of the authors (CA) was, until recently, tasked with providing specialist oversight of the services. Both OC and CA have been employed in the service for 10 years, and CC for 3 years. OC serves as head of state clinical psychology services in ID in the Western Metropole of the Cape Town region; in terms of administrative hierarchies, there is another ID service in Cape Town. OC meets regularly with the psychologist in charge of that service, during which meetings clinical issues are discussed in detail, and LS is the research supervisor of that same psychologist. The authors of this article, therefore, are familiar with the practice trends in our context.

The NICE guideline 11 of 2015 and behavior that challenges

Behavior that challenges has been cited as one of the most common reasons why people with ID are referred to mental health professionals at dedicated ID services [19]. Behavior that challenges refers to a set of discrete and observable behaviors that include verbal and physical aggression, self-injurious behavior, destructive behavior, overactivity, sexualized behavior, and night-time disturbance [20]. Behavior that challenges therefore encompasses descriptions of different behaviors with varying etiological bases and maintaining conditions. The following definition of behavior that challenges emphasizes the need to assess the impact of such behaviors on the person and their environment:

Behaviour of such an intensity, frequency or duration as to threaten the quality of life and/or the physical safety of the individual or others and is likely to lead to responses that are restrictive, aversive or result in exclusion. [21]

The NICE Guideline 11 of 2015 cites research, mostly controlled and uncontrolled comparative intervention studies, to provide low to medium quality evidence that cognitive behavior therapy (CBT), parental skills training and mindfulness therapy have led to significant reductions in parental stress and depressive symptoms among families of persons with ID [3]. The document recommends that caregivers should receive the following forms of intervention from services for persons with ID:

  • Assistance and information that would allow caregivers access to relevant health services to obtain support for their own physical and psychological needs.

  • The provision of respite services.

  • Interventions aimed at providing families with easy-to-understand information about family advocacy; group interventions for families; formal evaluation of the perceived impact on families of the family member’s behavior that challenges; parental skills training to manage such behaviors; and an inclusive approach to ensure that family members are active role players in the decision-making process and implementation of strategies to manage behavior that challenges.

  • If the caregiver presents with a mental health problem, services for persons with ID should either refer the carer for psychological and/or psychiatric intervention or render such services through their own organization. Psychotherapeutic family support should be evidence-based in accordance with existing NICE Guidelines [3].

Results

Applying the NICE guideline 11 of 2015 to the work of psychologists in a South African clinic for adults with ID and behavior that challenges: family interventions

The Western Cape Government Department of Health is tasked with the provision of health care services to more than 6 million persons who live in the Western Cape Province. Mental health services for community-based adults and children with ID are provided in two Out-Patient Clinics within two Psychiatric Hospitals situated in the Western and Eastern Metropole districts of the City of Cape Town. Both health facilities are affiliated to local universities for teaching and training purposes and together provide the only dedicated ID tertiary level mental health services in South Africa. The clinical capacity of the two clinics for children and adults with ID is limited by inadequate skilled resources and services for families of persons with ID in the primary health sector. Ideally, families should have primary access to mental health service provision for the person with ID, via the community clinics and district and other regional level health facilities. The under-resourcing of mental health services in general in South Africa results in many of those who could be served at a district and regional level, attending services at centrally based tertiary facilities. In recognition of the aforementioned service-delivery challenges, the Western Cape Department of Health is currently in the process of reconfiguring mental health services by re-allocating resources to community and district health services [22]. In addition, due to inequities in the South African health care system, those from rural areas with ID and mental health problems are under-represented in the specialized services here [10]. Referrals to the two clinics are therefore not representative of the entire group of persons with ID and behavior that challenges in the Western Cape Province.

Table 1 describes the implementation of the NICE Guideline 11 of 2015 by three psychologists within the context of local considerations in one of the two Out-Patient Clinics. The overall multidisciplinary mental health service consults with approximately 150–200 adult attendees per month.

Table 1 NICE Guideline 11 – Recommendations when working with carers
Full size table

Discussion

It is important to stress that the approach discussed in this article is based largely on the authors’ own extensive clinical experience and is not based on, for example, a research study where participants are asked to respond to specific questions. This is a limitation of our work, but it is also important to point out that in terms of dedicated ID mental health services in the province in which we work, there are only six psychologists, and we work closely with all of these practitioners and act as clinical supervisors to all but one of these six psychologists. This last psychologist is supervised by a practitioner who in turn is supervised by OC.

The emerging field of global mental health makes it clear that though there are many features of evidence-based treatments which are transferable in a range of contexts, careful attention to local norms, contexts and resources are important [23,24,25,26,27,28].

The implementation of many of the NICE Guideline 11’s recommendations for carer support and family interventions is feasible in a South African context, particularly those recommendations which deal with an explicit conceptual recognition of collaboration, social valorization, individualization, social inclusivity and a clinical understanding of behavior that challenges as involving interactive processes between the person and his environment. We believe that the ethos of the NICE Guidelines could be applied in all settings: a collaborative working relationship, respect and treating all persons with dignity enables a level of therapist and psychologist responsivity that is independent of fiscal and human resources.

Economically South Africa is positioned between low-income and high-income countries and has been designated by the World Bank as a “higher middle-income country” [29]. The psychologists in the clinic described having access to contemporary electronic journals and research findings; we have a well-stocked psychometric test library; and it is possible to obtain funding to attend international scientific conferences. There are limited training opportunities, but internationally-accredited courses are available in some of the interventions that are recommended in the NICE Guideline 11, for example, cognitive-behavior therapy, low-arousal approaches in the management of behavior that challenges, and recognized assessment instruments such as the Autism Diagnostic Observation Schedules (ADOS). Our local clinic context is in stark contrast to services in most rural areas in low-income countries, particularly those that lack coordinated mental health care services. While we are able to successfully implement many of the NICE Guideline recommendations with regard to family interventions, a major problem is that we can only offer these services to a select few families – the majority of families in need of similar services do not have access to them because of a lack of primary health care capacity and geographical inequities in accessing health care, especially in rural areas. The effectiveness of behavioral interventions is also hampered by environmental and social factors such as poverty/low socio-economic status and unemployment. South Africa’s prevailing social inequalities and other societal issues, such as high levels of aggression and crime in communities, continue to cause family distress and, inasmuch, expressions of behavior that challenges need to be firmly contextualized within the broader socio-political context.

Conclusions

We have argued that where guidelines such as the NICE Guidelines do not apply throughout contextually, it remains important to retain the principles behind these guidelines in local contexts. For example, in the South African context it will be salient to identify and use different pathways to facilitate respite for parents and families. The focus would not be on a respite service such as recommended by the NICE Guidelines, but rather the involvement of older siblings and other relatives as temporary caregivers in the home environment of the person with ID and behavior that challenges. However, this does not exclude recruitment of wider community resources and development of focused non-profit organizations to meet the need for respite care. It would also be important to identify how the principle of respite care is, or could be, applied in more poorly resourced contexts and countries, although this is an under-researched area.

In order to address the transferability of the NICE 11 Guidelines into different contextual situations, and taking the considerations discussed into account, we suggest that smaller descriptive, qualitative studies are necessary to explore the contextual limitations and resource strengths that exist in low- and middle-income settings. It will also be helpful to study these issues more systematically than to draw only on the clinical experience of authors, as we have done. In the absence of evidence-based research, smaller research initiatives could set the agenda by plotting ways to strengthen existing clinical, family, and community interventions whilst simultaneously building an informed foundation for future research. Of course, the need for rigorous evidence-based treatments and interventions in low-income and middle-income countries remains a priority.