'Deep down in their heart, they wish they could be given some incentives': a qualitative study on the changing roles and relations of care among home-based caregivers in Zambia.

BACKGROUND: Across Sub-Saharan Africa, the roll-out of antiretroviral treatment (ART) has contributed to shifting HIV care towards the management of a chronic health condition. While the balance of professional and lay tasks in HIV caregiving has been significantly altered due to changing skills requirements and task-shifting initiatives, little attention has been given to the effects of these changes on health workers' motivation and existing care relations. METHODS: This paper draws on a cross-sectional, qualitative study that explored changes in home-based care (HBC) in the light of widespread ART rollout in the Lusaka and Kabwe districts of Zambia. Methods included observation of HBC daily activities, key informant interviews with programme staff from three local HBC organisations (n = 17) and ART clinic staff (n = 8), as well as in-depth interviews with home-based caregivers (n = 48) and HBC clients (n = 31). RESULTS: Since the roll-out of ART, home-based caregivers spend less time on hands-on physical care and support in the household, and are increasingly involved in specialised tasks supporting their clients' access and adherence to ART. Despite their pride in gaining technical care skills, caregivers lament their lack of formal recognition through training, remuneration or mobility within the health system. Care relations within homes have also been altered as caregivers' newly acquired functions of monitoring their clients while on ART are met with some ambivalence. Caregivers are under pressure to meet clients and their families' demands, although they are no longer able to provide material support formerly associated with donor funding for HBC. CONCLUSIONS: As their responsibilities and working environments are rapidly evolving, caregivers' motivations are changing. It is essential to identify and address the growing tensions between an idealized rhetoric of altruistic volunteerism in home-based care, and the realities of lay worker deployment in HIV care interventions that not only shift tasks, but transform social and professional relations in ways that may profoundly influence caregivers' motivation and quality of care.

Healthcare-seeking behaviour among the tribal people of Bangladesh: Can the current health system really meet their needs?

Despite the wealth of studies on health and healthcare-seeking behaviour among the Bengali population in Bangladesh, relatively few studies have focused specifically on the tribal groups in the country. This study aimed at exploring the context, reasons, and choices in patterns of healthcare-seeking behaviour of the hill tribal population of Bangladesh to present the obstacles and challenges faced in accessing healthcare provision in the tribal areas. Participatory tools and techniques, including focus-group discussions, in-depth interviews, and participant-observations, were used involving 218 men, women, adolescent boys, and girls belonging to nine different tribal communities in six districts. Data were transcribed and analyzed using the narrative analysis approach. The following four main findings emerged from the study, suggesting that the tribal communities may differ from the predominant Bengali population in their health needs and priorities: (a) Traditional healers are still very popular among the tribal population in Bangladesh; (b) Perceptions of the quality and manner of treatment and communication can override costs when it comes to provider-preference; (c) Gender and age play a role in making decisions in households in relation to health matters and treatment-seeking; and (d) Distinct differences exist among the tribal people concerning their knowledge on health, awareness, and treatment-seeking behaviour. The findings challenge the present service-delivery system that has largely been based on the needs and priorities of the plainland population. The present system needs to be reviewed carefully to include a broader approach that takes the sociocultural factors into account, if meaningful improvements are to be made in the health of the tribal people of Bangladesh.

From awareness to involvement? A qualitative study of respiratory patients' awareness of health service change.

BACKGROUND Despite the policy rhetoric, patient involvement in health service decisions remains limited. Highlighted barriers include a concern that most patients are unable to see beyond personal aspects of their care in order to contribute meaningfully to health service development, and a perception that professionals do not welcome patient involvement. OBJECTIVES We aimed to explore respiratory patients' awareness of changes in local health service provision and provide insight into health professionals' attitudes to engaging patients. METHODS Nested within an ethnographic study of health service reconfiguration, we recruited 31 patients with a range of respiratory diseases from four case study areas in England and Wales. Data from telephone interviews, illness diaries and focus groups with patients, and interviews with health professionals and managers were transcribed and analysed using the Framework approach. RESULTS Participants were not only aware of trends in health service provision (e.g. emergence of new professional roles, shift from secondary to primary care) but interpreted changes in the light of local and national events. Despite this awareness, none of the patients was formally involved in service development, though some contributed to local voluntary groups. Professionals generally welcomed the need for patients' views to be heard. DISCUSSION AND CONCLUSIONS Our data give grounds for optimism. Patients are aware of and interested in a broad range of health-related issues. Professionals' motivation to involve patients in service development may be underestimated. Although practical obstacles remain, our findings should encourage the ongoing search for effective models of promoting patient engagement in health-care services.

Mind the gap between policy imperatives and service provision: a qualitative study of the process of respiratory service development in England and Wales.

BACKGROUND: Healthcare systems globally are reconfiguring to address the needs of people with long-term conditions such as respiratory disease. Primary Care Organisations (PCOs) in England and Wales are charged with the task of developing cost-effective patient-centred local models of care. We aimed to investigate how PCOs in England and Wales are reconfiguring their workforce to develop respiratory services, and the background factors influencing service redesign. METHODS: Semi-structured qualitative telephone interviews with the person(s) responsible for driving respiratory service reconfiguration in a purposive sample of 30 PCOs. Interviews were recorded, transcribed, coded and thematically analysed. RESULTS: We interviewed representatives of 30 PCOs with diverse demographic profiles planning a range of models of care. Although the primary driver was consistently identified as the need to respond to a central policy to shift the delivery of care for people with long-term conditions into the community whilst achieving financial balance, the design and implementation of services were subject to a broad range of local, and at times serendipitous, influences. The focus was almost exclusively on the complex needs of patients at the top of the long-term conditions (LTC) pyramid, with the aim of reducing admissions. Whilst some PCOs seemed able to develop innovative care despite uncertainty and financial restrictions, most highlighted many barriers to progress, describing initiatives suddenly shelved for lack of money, progress impeded by reluctant clinicians, plans thwarted by conflicting policies and a PCO workforce demoralised by job insecurity. CONCLUSION: For many of our interviewees there was a large gap between central policy rhetoric driving workforce change, and the practical reality of implementing change within PCOs when faced with the challenges of limited resources, diverse professional attitudes and an uncertain organisational context. Research should concentrate on understanding these complex dynamics in order to inform the policymakers, commissioners, health service managers and professionals.

Health sector reforms and human resources for health in Uganda and Bangladesh: mechanisms of effect.

BACKGROUND: Despite the expanding literature on how reforms may affect health workers and which reactions they may provoke, little research has been conducted on the mechanisms of effect through which health sector reforms either promote or discourage health worker performance. This paper seeks to trace these mechanisms and examines the contextual framework of reform objectives in Uganda and Bangladesh, and health workers' responses to the changes in their working environments by taking a 'realistic evaluation' approach. METHODS: The study findings were generated by triangulating both qualitative and quantitative methods of data collection and analysis among policy technocrats, health managers and groups of health providers. Quantitative surveys were conducted with over 700 individual health workers in both Bangladesh and Uganda and supplemented with qualitative data obtained from focus group discussions and key interviews with professional cadres, health managers and key institutions involved in the design, implementation and evaluation of the reforms of interest. RESULTS: The reforms in both countries affected the workforce through various mechanisms. In Bangladesh, the effects of the unification efforts resulted in a power struggle and general mistrust between the two former workforce tracts, family planning and health. However positive effects of the reforms were felt regarding the changes in payment schemes. Ugandan findings show how the workforce responded to a strong and rapidly implemented system of decentralisation where the power of new local authorities was influenced by resource constraints and nepotism in recruitment. On the other hand, closer ties to local authorities provided the opportunity to gain insight into the operational constraints originating from higher levels that health staff were dealing with. CONCLUSION: Findings from the study suggest that a) reform planners should use the proposed dynamic responses model to help design reform objectives that encourage positive responses among health workers b) the role of context has been underestimated and it is necessary to address broader systemic problems before initiating reform processes, c) reform programs need to incorporate active implementation research systems to learn the contextual dynamics and responses as well as have inbuilt program capacity for corrective measures d) health workers are key stakeholders in any reform process and should participate at all stages and e) some effects of reforms on the health workforce operate indirectly through levels of satisfaction voiced by communities utilising the services.

The Department of Health's research governance framework remains an impediment to multi-centre studies: findings from a national descriptive study.

OBJECTIVE: We describe our experience of using the standard application form, designed to streamline applications for multi-centre research, to seek approval from all primary care organizations (PCOs) in England and Wales to undertake a single telephone interview with a health service manager. DESIGN: We sent applications (n=316), by email to each PCO, or consortium of PCOs, attaching a completed standard application form, the 15 required documents, and the approval we had been granted by the lead NHS organization. We maintained detailed records of the responses to our application, subsequent correspondence, additional paperwork requested, and time spent on the approval process. SETTING: The UK Research Governance Framework, which regulates all research conducted in health and social care settings. PARTICIPANTS: All PCOs in England and Wales. INTERVENTIONS: None. MAIN OUTCOME MEASURES: Time taken to obtain approval to undertake a telephone interview with a health service manager. RESULTS: We were unable to establish contact with 13 (4%) PCOs. Six months after submitting our application we had received approval from 259/316 (82%) PCOs and were still awaiting a verdict from 41 (13%). The median time to approval was 56 days (IQR 42-72). Overall, an estimated 318 staff-hours were spent completing supplementary forms, providing additional information and chasing up dormant applications. CONCLUSIONS: Recent initiatives to 'streamline' research governance approval have failed to address the problems that face researchers undertaking multi-centre studies. There is an urgent need to develop a simpler process that allows low risk research to take place without threatening staff morale and endangering the quality of the research outputs. In the meantime, we advise researchers to allow far greater time than might reasonably be envisioned to obtain research governance approval.

From support to boundary: a qualitative study of the border between self-care and professional care.

OBJECTIVE: While healthcare systems globally are promoting self-care, patients' perceptions of the policy shift remain relatively unexplored. Our qualitative study explored how organisation of care shaped patients' perceptions and experiences of self-care in dealing with their respiratory illnesses. METHODS: We recruited 31 people, representing a range of ages and respiratory conditions and generated data using illness diaries, telephone interviews and focus group discussions. Data were transcribed, analysed and triangulated using the framework approach. RESULTS: Patients were aware of the increasing focus on self-care, but felt that the term was incongruous as it described what they were already doing. While many respondents appreciated increased clinical responsibility some felt 'abandoned' by professionals. To be active partners in care, they needed flexible access to trusted healthcare professionals who respected patients' knowledge about their condition and preferences for management. CONCLUSION: The shift to self-care needs to be underpinned by a whole system change. Professionals need communication skills to engage with patients as partners in care, working within systems that offer flexible access to supportive care. PRACTICE IMPLICATIONS: Systems of care for people with long-term conditions need to ensure flexible access between self-care and professional support. Simplification of systems, clear sign-posting and co-ordination of individual patient care by a key trusted professional are essential.

Is multidisciplinary teamwork the key? A qualitative study of the development of respiratory services in the UK.

OBJECTIVES: Using frameworks, such as the long-term conditions pyramid of healthcare, primary care organizations (PCOs) in England and Wales are exploring ways of developing services for people with long-term respiratory disease. We aimed to explore the current and planned respiratory services and the roles of people responsible for change. SETTING: A purposive sample of 30 PCOs in England and Wales. DESIGN: Semi-structured telephone interviews with the person responsible for driving the reconfiguration of respiratory services. Recorded interviews were transcribed and coded, and themes identified. The association of the composition of the team driving change with the breadth of services provided was explored using a matrix. RESULTS: All but two of the PCOs described clinical services developed to address the needs of people with respiratory conditions, usually with a focus on preventing admissions for chronic obstructive pulmonary disease (COPD). Although the majority identified the need to develop a strategic approach to service development and to meet educational needs of primary care professionals, relatively few described clearly developed plans for addressing these issues. Involvement of clinicians from both primary and secondary care was associated with a broad multifaceted approach to service development. Teamwork was often challenging, but could prove rewarding for participants and could result in a fruitful alignment of objectives. The imminent merger of PCOs and overriding financial constraints resulted in a 'fluid' context which challenged successful implementation of plans. CONCLUSIONS: While the majority of PCOs are developing clinical services for people with complex needs (principally in order to reduce admissions), relatively few are addressing the broader strategic issues and providing for local educational needs. The presence of multidisciplinary teams, which integrated primary and secondary care clinicians with PCO management, was associated with more comprehensive service provision addressing the needs of all respiratory patients. Future research needs to provide insight into the structures, processes and inter-professional relationships that facilitate development of clinical, educational and policy initiatives which aim to enhance local delivery of respiratory care.