Understanding the linkages between informal and ...

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Understanding the linkages between informal and formal care for people living with HIV in sub-Saharan Africa a

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c

Shelley Lees , Karina Kielmann , Fabian Cataldo & D. GitauMburu

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Faculty of Public Health and Policy, London School of Hygiene and Tropical Medicine, London, UK b

Institute for International Health and Development, Queen Margaret University, Edinburgh, UK c

Research Department, Dignitas International, Zomba, Malawi

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International HIV/AIDS Alliance, Brighton, UK Published online: 01 Nov 2012.

To cite this article: Shelley Lees , Karina Kielmann , Fabian Cataldo & D. Gitau-Mburu (2012) Understanding the linkages between informal and formal care for people living with HIV in subSaharan Africa, Global Public Health: An International Journal for Research, Policy and Practice, 7:10, 1109-1119, DOI: 10.1080/17441692.2012.733403 To link to this article: http://dx.doi.org/10.1080/17441692.2012.733403

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Global Public Health Vol. 7, No. 10, December 2012, 11091119

Understanding the linkages between informal and formal care for people living with HIV in sub-Saharan Africa


Shelley Leesa*, Karina Kielmannb, Fabian Cataldoc and D. Gitau-Mburud a Faculty of Public Health and Policy, London School of Hygiene and Tropical Medicine, London, UK; bInstitute for International Health and Development, Queen Margaret University, Edinburgh, UK; cResearch Department, Dignitas International, Zomba, Malawi; dInternational HIV/AIDS Alliance, Brighton, UK

(Received 8 July 2011; final version received 19 July 2012) In response to the human resource challenges facing African health systems, there is increasing involvement of informal care providers in HIV care. Through social and institutional interactions that occur in the delivery of HIV care, linkages between formal and informal systems of care often emerge. Based on a review of studies documenting the relationships between formal and informal HIV care in sub-Saharan Africa, we suggest that linkages can be conceptualised as either ‘actor-oriented’ or ‘systems-oriented’. Studies adopting an actor-oriented focus examine hierarchical working relationships and communication practices among health systems actors, while studies focusing on systems-oriented linkages document the presence, absence or impact of formal inter-institutional partnership agreements. For linkages to be effective, the institutional frameworks within which linkages are formalised, as well as the ground-level interactions of those engaged in care, ought to be considered. However, to date, both actor- and system-oriented linkages appear to be poorly utilised by policy makers to improve HIV care. We suggest that linkages between formal and informal systems of care be considered across health systems, including governance, human resources, health information and service delivery in order to improve access to HIV services, enable knowledge transfer and strengthen health systems. Keywords: HIV; continuum of care; informal providers; formal providers; linkages

Introduction In recent years, there has been increased interest in the inclusion of informal care providers1 as partners in health systems in low-income settings (WHO 2003a, Agarwal et al. 2008). The call for more effective collaboration across formal and informal sectors stems from the recognition that informal carers are an important resource for many sick and vulnerable individuals (Pe´rez and Martinez 2008), and supports the idea of a ‘continuum of care’. This term most commonly refers to individual patient care, specifically the ‘promotion of appropriately directed care with a series of linkages to ensure that no patient is lost to follow-up’ (Kerber et al. 2007, p. 1359). In practice, achieving this ideal involves the integration of prevention, treatment and care initiatives. *Corresponding author. Email: [email protected] ISSN 1744-1692 print/ISSN 1744-1706 online # 2012 Taylor & Francis http://dx.doi.org/10.1080/17441692.2012.733403 http://www.tandfonline.com


1110 S. Lees et al. With renewed interest in the potential of lay and community health workers (CHWs) to contribute to achieving the Millennium Development Goals (Bhutta et al. 2010), low-level and lay health cadres are seen as critical links in the ‘continuum of care’ as it is described for people living with HIV (WHO 2000, Ogden et al. 2004). Before the availability of antiretroviral therapy (ART), long-term care for people living with HIV in sub-Saharan Africa was generally provided at home (WHO 2002, Ncama 2005). As ART became more widely available in the mid-2000s, underresourced and under-staffed health systems struggled with the demands of rolling out HIV prevention, treatment, care and support services. Lay and informal caregivers who had long been filling the gaps in formal delivery of HIV care were increasingly seen as one way of alleviating the human resource crisis facing HIV care (Schneider et al. 2008, WHO and Global Health Workforce Alliance (GHWA) 2010). With the advent of ART and the emphasis on treatment adherence, many community and lay carers have taken on tasks that were previously the role of formal carers such as tracing non-adherent patients, providing HIV testing and counselling as well as other services (Rohleder and Swartz 2005, Schneider et al. 2008, Sanjana et al. 2009). More formal strategies of ‘task-shifting’ in HIV care involving the delegation of prevention, care and support activities to lower-level cadres (WHO and GHWA 2010) have been explored, with some studies suggesting that lay caregivers may be involved in the initiation of ART beyond their role as treatment supporters and that often, lower-level cadres provide equal or better quality of care compared to more qualified health workers (Amuron et al. 2007, Hermann et al. 2009, Callaghan et al. 2010). In order to effectively function, the care continuum model depends on strong links, referral systems and partnerships between HIV service providers (Ogden et al. 2006). In practice, however, ‘linkage mechanisms remain poorly defined. The ways in which any given individual moves ‘across’ the continuum are not apparent, and the ‘peer support’ domain appears completely unlinked to the rest of the continuum’ (Ogden et al. 2006, p. 337). A review of research on home-based care (HBC) found that there was limited analysis of the mechanisms for establishing links, and the challenges in building partnerships (Campbell and Foulis 2004, p. 10). Wringe et al. (2010) reiterate that the commitment to delivering comprehensive HBC programmes by policy-makers and funders remains hindered by ‘weak linkages’ and is ‘unlikely to translate into workable practices on the ground in the absence of more innovative thinking about how effective links between different service providers or organisations work in practice’ (Wringe et al. 2010, p. 359). Moreover, practical links between formal and informal or lay providers of HIV care are rarely explored (Boros 2008). In this paper, we draw on studies that document the relationship between formal and informal HIV care in sub-Saharan Africa in order to characterise the nature of the existing linkages, and to discuss the implications of these linkages for the goal of ensuring a continuum of care in HIV services. Methods We sought to identify empirical studies that examined existing linkages between formal and informal systems of HIV care in sub-Saharan Africa, using the following search terms: ‘HIV’, ‘AIDS’, ‘formal’, ‘informal’, ‘linkages’, ‘continuum’, ‘partnerships’, ‘frameworks’ and ‘Africa’. Only studies published in English and those

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concerned with HIV service delivery in sub-Saharan Africa were included. Databases searched included Medline Ovid, PubMed, WHOLIS and Web of Science. Relevant grey literature was also searched through Google Scholar. As a result, eight studies that examined, either explicitly or implicitly, the relationship between informal and formal care in sub-Saharan Africa were identified (see Table 1).


Linking actors versus systems In the studies reviewed, links between lay and formal care are conceptualised differently, and can be characterised as either actor (or carer)-oriented or systems (or institution)-oriented. In actor-oriented studies, the linkages are more generally defined and influenced by the intentions, actions and working relationships found among people involved in caregiving; in systems-oriented studies, the focus is on organisational ‘partnerships’ and the integration of modalities of care, hence here, linkages are defined and shaped by the implementation of health policy and institutional practice. Actor-oriented linkages The working relationship between actors represents a primary interface between the formal and informal HIV treatment and care sectors, which most often occurs at the local clinic level (Boros 2011). Formal sector actors include clinicians, nurses, public health workers and lay workers, who are generally non-professionals who are trained to carry out some function of healthcare delivery. In HIV care, lay workers might include, for example, lay counsellors; DOT supporters; and ART supporters (Lewin et al. 2010). The informal sector comprises a range of different actors, who vary in terms of their formal professional status, with family members providing support and care representing the least formalised end of the spectrum, through community caregivers (CCGs) and CHWs who represent the most formalised end of the spectrum. CCGs provide care at the community level that may be unlinked to formal care and support services. Others may receive training and supervision from non-governmental and community-based organisations, such as provided by The AIDS Support Organisation (TASO) in Uganda (International HIV/AIDS Alliance 2011). CHWs tend to be members of the community and represent vulnerable communities in which they work (Gilkey et al. 2011). They may include village health workers, health educators, HIV/AIDS communicators, peer educators, ART adherence supporters, Tuberculosis directly observed therapy (TB DOTS) supervisors, home-based caregivers, voluntary testing and counselling (VCT) counsellors, amongst others (Friedman 2005). They may be supported by, or part of, the health care system and may or may not receive remuneration (Berman et al. 1987, WHO 2007). In a rare study of the dynamics of formal and informal HIV care in South Africa, Boros (2011) explored working relationships between nurses and home-based caregivers. Caregivers describing a ‘bad’ relationship referred to poor interactions with clinic staff and negative perceptions of the relationships with clinic staff and patients. Those who described a ‘good’ relationship attributed this to a sense of ‘working together’ with formal caregivers, and to the mutual appreciation of contributions to the care of patients (Boros 2011).

1112 S. Lees et al. Table 1.

Studies reviewed.

Authors (Year) Boros (2008)


Suri et al. (2007)

Uys (2003)

Location

Aims

Methodology

Linkage

Johannesburg, To explore the working South Africa relationship between home-based caregivers and clinic nurses at locations in two informal settlements To identify ways of Rural Kwaimproving the current Zulu Natal, South Africa CHWs programme to combat the spread of HIV and TB

Interface between clinics and home-based care (HBC) organisations Supervision of CHWs by clinic staff

South Africa

Supervision of CCGs by clinic staff

Makoae and Lesotho Jubber (2008) Bond et al. (2005)

Lusaka, Zambia

Cataldo et al. (2010)

Zambia

Kiley and Hovorka (2009)

Botswana

Semi-structured interviews with home-based caregivers, nurses and Department of Health staff Survey with CHWs, focus group discussions with CHWs, and interviews with CHWs, administrator, physicians and nurses Site visits with a To explore the structured assessment, palliative care, and terminal care of people observation of home visits with interviews with HIV/AIDS with people with AIDS (PWA), CCGs and nurses, meeting transcriptions and terminal care interviews In-depth interviews To analyse the with family caregivers challenges which family caregivers encounter HBC Interviews with TB To explore the widening role of HBC patients under HBC, caregivers, TB patients organisations in the not under HBC and management of TB managers patients Interviews with ART To examine the role staff, in-depth and acceptability of home-based caregivers interviews with homein relation to the public based caregivers and health roll-out of ART people living with HIV, and daily observations The role and Interviews with CSO experiences of HIV/ personnel AIDS civil society organisations (CSOs) in the national response to HIV/AIDS

Continuity of care

Partnerships between HBC organisations and health sector Relationship between home-based caregivers and the health sector Role of CSOs in the national response to HIV/AIDS


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Table 1 (Continued ) Authors (Year)

Location


Russell and South Africa Schneider (2000a)

Aims

Methodology

To draw lessons from Key informant community-based care interviews and visits to projects to facilitate community-based care and support for AIDS

Linkage The continuum of care in AIDS care

Relationships between formal and informal carers tend to be characterised by a hierarchy of status and division of labour. These characteristics stem from set-ups where the actors (usually nurses) in the formal sector provide both training and supervision of actors in the informal sector. For example, in different provinces in South Africa, hospital and hospice-based primary health care professionals provide training, supervision and support to CCGs who in turn provide care, information, supervision, and support to people living with HIV, their families and the community in which they live (Uys 2003). The hierarchical and task-oriented nature of the relationship between informal and formal health care workers creates challenges in ensuring mutual respect and good communication. For example, Uys (2003) describes situations where CCGs are unable to successfully advocate on behalf of their clients with professional caregivers because they lack authority. Boros (2011) and Suri et al. (2007) note that the lack of structured means and forums for communication both verbal and written between clinic nurses and caregivers are seen as a hindrance to good working relations. In Lesotho, family caregivers felt hindered in their attempts to provide care when health professionals did not share a patients’ diagnosis with them on grounds of confidentiality, despite the fact that caregivers were closely involved in the care of patients and intuitively knew their status (Makoae and Jubber 2008). In Zambia, despite the increasing importance of HBC organisations in the management of TB patients, communication between HBC representatives and formal sector staff was minimal; meetings coordinated by a district HIV/AIDS Task Force were often poorly attended by HBC staff, who also failed to submit monthly reports regularly to the district regarding their activities (Bond et al. 2005). Another study from Zambia by Cataldo et al. (2010) explored the changing relationship between home-based caregivers and clinic staff in the context of greater access to ART. Despite being increasingly called on to support the formal sector delivery of ART, CCGs in this study expressed their dissatisfaction with low visibility and lack of recognition for their contribution to the health system at large notably suggesting that ‘uniforms’ might help them acquire a professional identity more congruent with that of the formal health care providers (Cataldo et al. 2010).

System-oriented linkages System-oriented linkages focus on the extent to which joint or shared working arrangements between the formal health sector and the informal sector organisations such as non-governmental organisations (NGOs) and faith-based organisations


1114 S. Lees et al. (FBOs) are formalised. The degree of formalisation ranged from no formal relationship to an integrated care approach, via an established partnership.2 The study by Uys (2003) mentioned above provides an example of one of the most formalised set-ups in rural South Africa: the integrated community-based home care model. In this model, developed in the mid-1990s, hospitals, hospices and primary health care clinics collaborate and take ownership of the programme to provide a continuum of services (Uys 2003). The inclusion of CCGs to provide counselling and support for both people who are symptom free as well as those in need of palliative and terminal care in the model suggests strong linkages between the formal and informal sectors. Exploring the system in seven South African sites, Uys found that involving CCGs ‘opened a door directly to the clients as soon as the diagnosis was made’ (Uys 2003, p. 278). Russell and Schneider (2000a) conducted a rapid appraisal of HBC programmes in South Africa and found that programmes that developed partnerships with other service and care agencies were more successful than those that did not. These include relationships with welfare agencies, hospitals and clinics. The partnerships tended to involve formal agreements with clinic and hospital providers, facilitating admissions to hospital or access to prescriptions and medications. Some programmes also negotiated supplies of equipment and other HBC necessities from hospital and clinic partners, in exchange for providing care to discharged patients in the community. In Zambia, for example, the HBC organisations used local residents as volunteers who made frequent visits to patients in their homes. Referral processes involved HBC organisations providing information to the health centre about the numbers of TB patients registered, deaths and defaulters or HBC organisations checking clinic records to identify new TB patients and coordinating food rations (Bond et al. 2005). In many circumstances, there is, however, no formal relationship between the informal and formal sector. The study by Boros (2011), discussed above, found that the relationship between HBC organisations and clinics in Johannesburg was ‘characterised by an almost complete lack of systems [. . .] there was no systematic mode of communication between the clinics and the HBC organisations, leading to weak or non-existent linkages’ (Boros 2011, p. 320). The Zambian study conducted by Bond et al. (2005) despite good referral processes also highlighted poor collaboration and lack of formalisation between the District Health Management Team and HBC organisations. Barriers to collaboration were a perceived lack of interest in HBC activities among health centre staff and the District Health Management Team, and an absence of policies concerning patient referrals or formalised partnerships (Bond et al. 2005). Boros (2008) identifies a number of barriers to formalinformal system linkages including: unsustainable funding; non-standardised training; poor management and administrative capacity; poor monitoring and evaluation; lack of definition of roles between informal and formal carers; and poor communication between stakeholders, especially through referral systems (Boros 2008). In Botswana, despite the role of AIDS committees in negotiating inter-agency linkages and partnerships for HIV-focused civil society organisations, establishing effective partnerships between HIV service providers was time-consuming and was hindered by a shortage of funds as well as a lack of awareness about other service providers in the area (Kiley and Hovorka 2009).


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Discussion It has been acknowledged that better quality of, as well as improved access to, HIV treatment and care can be promoted through a mixed formal and informal sector approach (Nsutebu et al. 2001, Ogden et al. 2006, Wringe et al. 2010). Amongst the guiding principles of the treatment 2.0 framework, which, building on the 3-by-5 initiative, is the blueprint for achieving universal access to ART, WHO states that HIV services should be based on decentralised approaches that leverage on communitybased systems, and strengthened partnerships that maximise the contribution of all stakeholders in a given country (WHO 2003b, WHO 2011). This review suggests, however, that it is important to consider both the institutional frameworks for linkages between formal and informal systems of care as well as their implications for the actors that represent care providers in these two sectors. While systems linkages may be hailed as desirable and important for ensuring continuity of care for individuals living with HIV, their viability is highly contestable if actors’ roles are ill-defined and working relationships poor. In order to work effectively, linkages need to be strengthened across various elements of the health systems framework, including governance and coordination, human resources, health information and service delivery. First, public health programmatic approaches to the epidemic have tended to focus on reducing individuals’ risk of HIV infections and increasing individuals’ access to treatment, often without taking into account the many contextual factors that mediate risk, access and wellbeing, the foundation of effective and sustainable linkages in HIV care. Thus, it is important to ensure that community participation is perceived as an integral part of formal health interventions by policy makers and global health funding agencies, including explicit recognition and support of CCGs. Second, linkages which are already in place need to actively promote and support a transfer of knowledge and skills from the formal to informal sector. A formalised partnership between civil society, the public and private health sector can help to build what Campbell et al. (2008, p. 509) refer to as ‘AIDS competent communities’. In some settings, CHWs now represent the ‘most formalised end of a continuum of community participation around HIV/AIDS, from treatment literacy training programmes for people living with HIV, to members of their social networks volunteering to be TB or ART ‘‘treatment buddies’’, and participation in rightsbased activist networks’ (Schneider et al. 2008, p. 182). However, linkages remain weak where communication and knowledge transfer are hindered by hierarchical relationships. Third, establishing and maintaining viable linkages require investments in health systems leadership and governance (Kwait et al. 2001, Wringe et al. 2010). For instance, Kiley and Hovorka (2009) demonstrate that good coordination and cooperation, and establishing and maintaining interagency linkages are important in preventing duplication of efforts, achieving cost efficiencies and disseminating good practices. This may require mapping of organisations, key actors, incentives, partnerships and networks (Kiley and Hovorka 2009), and perhaps, a recognition that there might be some informal actors and care-givers who are unconnected with any formal service. The success of systems linkages in strengthening continuum of care will depend on strengthening the links between actors that rely on trust, mutual interest and respect. This can be achieved through good quality training and supervision of informal care workers; improved verbal and written communication

1116 S. Lees et al. between individuals and between groups of actors involved in the delivery of HIV care and treatment; and better understanding of explicit and implicit contracts.


Conclusion The health systems imperative of ensuring a continuum of HIV care has brought to the forefront the need to involve informal care providers as equal stakeholders in the global response to HIV. Here, we have suggested that a focus on actors and their working relationships is distinct and often viewed separately from the institutional arrangements at a systems level. Both actor-oriented linkages and system-oriented linkages appear to be weak or poorly utilised to improve the care of people living with HIV. Yet systems are ultimately made up of actors, hence paying attention to both the institutional arrangements as well as working relationships within these is important for understanding why and how linkages between formal and informal care sectors can be enabled and sustained. In the case of care and treatment for people living with HIV, it is important to acknowledge not only the historical impetus for the working relationship between the formal and informal sector, but also the future potential for this relationship to improve and strengthen the continuum of care. In addressing issues around coordination, human resources, health information and service delivery, we suggest that health systems can benefit from stronger formalinformal care linkages through functional partnership frameworks; improved referral systems; better health information systems; and the expansion of health training, mentoring and practice opportunities (Hermann et al. 2009, Callaghan et al. 2010). Integration of the formal and informal systems could increase efficiency, reduce staff fatigue and absenteeism (Modiba et al. 2002), increase awareness of available services (Russell and Schneider 2000b) and enhance the community mobilisation and participation, which is a critical enabler in the AIDS response (Friedman 2005, Schwartla¨ nder et al. 2011). As informal providers move to fill gaps unmet by formal health systems, more evidence of what models of linkages work in different contexts and how these linkages have stimulated innovative care, knowledge transfer and professionalisation of informal care is needed (Rier and Indyk 2006, Mechael et al. 2010). These insights will be critical in unlocking community expertise and capabilities (Suri et al. 2007) as well as in demonstrating the value for money in investing in community systems and interventions to promote continuum of care for HIV and other chronic diseases. Acknowledgements The authors would like to thank Virginia Bond who provided comments on an earlier draft. The study was funded by the Swedish International Development Cooperation Agency through the Africa Regional Program of the International HIV AIDS Alliance, and the UK Department for International Development through the Evidence for Action Research Consortium.

Notes 1. Informal care providers encompass a broad range of people including relatives, peers, community lay health workers, with varying roles and degrees of formal affiliation with the health system.


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2. A partnership can be seen as a formally agreed relationship between people or organisations in which they share resources and responsibilities in order to achieve common goals (The Global Fund 2010).


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