Participation in voluntary and community organisations in the United Kingdom and the influences on the self‐management of long‐term conditions

Voluntary and community organisations (VCOs) have health benefits for those who attend and are viewed as having the potential to support long‐term condition management. However, existing community‐level understandings of participation do not explain the involvement with VCOs at an individual level, or the nature of support, which may elicit health benefits. Framing active participation as ‘doing and experiencing’, the aim of this qualitative study was to explore why people with long‐term vascular conditions join VCOs, maintain their membership and what prevents participation. Twenty participants, self‐diagnosed as having diabetes, chronic heart disease or chronic kidney disease, were purposefully sampled and recruited from a range of VCOs in the North West of England identified from a mapping of local organisations. In semi‐structured interviews, we explored the nature of their participation. Analysis was thematic and iterative involving a continual reflection on the data. People gave various reasons for joining groups. These included health and well‐being, the need for social contact and pursuing a particular hobby. Barriers to participation included temporal and spatial barriers and those associated with group dynamics. Members maintained their membership on the basis of an identity and sense of belonging to the group, developing close relationships within it and the availability of support and trust. Participants joined community groups often in response to a health‐related event. Our findings demonstrate the ways in which the social contact associated with continued participation in VCOs is seen as helping with long‐term condition management. Interventions designed at improving chronic illness management might usefully consider the role of VCOs.     

The everyday risk work of Dutch child‐healthcare professionals: inferring ‘safe’ and ‘good’ parenting through trust,as mediated by a lens of gender and class

Amidst intensifying policy concerns with children's wellbeing and development, healthcare professionals are required not only to assess risk of abuse and neglect, but to manage risk of ‘poor parenting’ more broadly. Drawing on 15 in‐depth interviews and non‐participant observations of 61 professional‐family interactions, across four preventative public health services for children in the Netherlands, we explored how professionals accomplished such risk work amid intractable uncertainties. Building inferences from brief encounters with families, professionals gauged the extent to which they trusted parents to care ‘appropriately’. This trust developed most readily with parents experienced as ‘familiar’ by the largely middle‐class female professionals. Harnessing Schutzian phenomenology, we analyse the related manifestations of social structure within the interactional‐dynamics and lifeworlds of risk assessment. We argue that social structures of gender, class and ethnicity can be seen as influential both through the differing potential for ‘we‐relationships’ to be formed and via the generalising and stereotyped knowledge applied in their absence.     

Risk,trust and patients’ strategic choices of healthcare practitioners

Research on patients’ choice of healthcare practitioners has focussed on countries with regulated and controlled healthcare markets. In contrast, low‐ and middle‐income countries have a pluralistic landscape where untrained, unqualified and unlicensed informal healthcare providers (IHPs) provide significant share of services. Using qualitative data from 58 interviews in an Indian village, this paper explores how patients choose between IHPs and qualified practitioners in the public and formal private sectors. The study found that patients’ choices were structurally constrained by accessibility and affordability of care and choosing a practitioner from any sector presented some risk. Negotiation and engagement with risks depended on perceived severity of the health condition and trust in practitioners. Patients had low institutional trust in public and formal private sectors, whereas IHPs operated outside any institutional framework. Consequently, people relied on relational or competence‐derived interpersonal trust. Care was sought from formal private practitioners for severe issues due to high‐competence‐based interpersonal trust in them, whereas for other issues IHPs were preferred due to high relationship‐based interpersonal trust. The research shows that patients develop a strategic approach to practitioner choice by using trust to negotiate risks, and crucially, in low‐ and middle‐income countries IHPs bridge a gap by providing accessible and affordable care imbued with relational–interpersonal trust.     

Learning from people with long‐term conditions: new insights for governance in primary healthcare

The introduction of top‐down centrally driven solutions to governance of healthcare, at the same time as increasing policy emphasis on greater ‘bottom up’ patient and public involvement in all aspects of healthcare, has set up complex tensions for policy implementation and healthcare practice. This paper explores the interplay of these agendas in the context of changes in primary healthcare services provided by the National Health Service in England. Specifically, it looks at service user involvement in a qualitative study of the professional response to changes in the governance and incentives in the care of people with long‐term conditions. Service users influenced and guided the study at local and national levels. Vignettes of patient stories developed by service users informed in‐depth interviews with 56 health and social care professionals engaged in the development of local policies and services for people with complex long‐term illness, and themes generated by cross case analysis were validated through service users. The findings presented here focus on four themes about risk and comparison of professionals' and service users' perspectives of the issues: managing risks/consistent support, the risks of letting go/feeling in control, professional identity/helping people to help themselves, and managing expectations/professionals losing out. In this study, service user involvement added value by validating understandings of governance, framing debates to focus on what matters at the point of care and enabling perspective sharing and interaction. We suggest that more collaborative forms of governance in healthcare that take account of service user perspectives and enable interaction with professional groups could help validate processes of quality assurance and provide motivation for continuous quality improvement. We offer a model for ‘opening up’ collaborative projects to evaluation and critical reflection of the interrelationships between the context, methods and outcomes of service user involvement.     

Exploration of joint working practices on anti‐social behaviour between criminal justice,mental health and social care agencies: A qualitative study

Although the police play an important role for people with mental health problems in the community, little is known about joint working practices between mental health, social care and police services. There is potential for tensions and negative outcomes for people with mental health problems, in particular when the focus is on behaviours that could be interpreted as anti‐social. This study explores perceptions about joint working between mental health, social care and police services with regard to anti‐social behaviour. We conducted a multi‐method sequential qualitative study in the UK collecting data between April 2014 and August 2016. Data were collected from two study sites: 60 narrative police logs of routinely gathered information, and semi‐structured interviews and focus groups with professionals from a range of statutory and third sector organisations (N = 55). Data sets were analysed individually, using thematic iterative coding before integrating the findings. We also looked at sequencing and turning points in the police logs. Findings mapped on a continuum of joint working practices, with examples more likely to be away from the policy ideal of partnership working as being central to mainstream activities. Joint working was driven by legal obligations and concerns about risk rather than a focus on the needs of a person with mental health problems. This was complicated by different perceptions of the police role in mental health. Adding anti‐social behaviour to this mix intensified challenges as conceptualisation of the nature of the problem and agreeing on best practice and care is open to interpretations and judgements. Of concern is an evident lack of awareness of these issues. There is a need to reflect on joint working practices, including processes and goals, keeping in mind the health and welfare needs of people with mental health problems.     

The significance of relational continuity of care for Māori patient engagement with predominantly non‐Māori doctors: findings from a qualitative study

Objective : This qualitative study explored self‐reported experiences of primary healthcare among a sample of urban Māori adults. This paper specifically focuses on the theme of relational continuity of care identified in participant discussions of access and engagement with their predominantly non‐Māori general practitioners (GPs). Methods : The study involved a purposively selected subsample (n=42) of the Christchurch Māori cohort of the Hauora Manawa Community Heart Study (n=244). Participants took part in in‐depth interviews, which were transcribed and analysed thematically. Results : Analysis identified compromised access to a preferred GP as a principal barrier to receiving quality and non‐discriminatory care from predominantly non‐Māori clinicians. In contrast to discussions of healthcare provided by usual GPs, episodic encounters with non‐regular clinicians were commonly framed as experiences discouraging utilisation and the perceived value of primary healthcare. Conclusions : Facilitating relational continuity of care for Māori patients and their clinicians may contribute towards mediating determinants of inequality at the clinical interface. Implications : Reducing significant health disparities between Māori and non‐Māori was a key goal of the reconfiguration of primary healthcare in the early 2000s. The role of relational continuity of care in achieving equitable inter‐ethnic health outcomes in primary healthcare settings is an important consideration.     

An evaluation of a community dietetics intervention on the management of malnutrition for healthcare professionals

Background: Healthcare professionals working in the community setting have limited knowledge of the evidence‐based management of malnutrition. The present study aimed to evaluate a community dietetics intervention, which included an education programme for healthcare professionals in conjunction with the introduction of a community dietetics service for patients ‘at risk’ of malnutrition. Changes in nutritional knowledge and the reported management of malnourished patients were investigated and the acceptability of the intervention was explored. Methods: An education programme, incorporating ‘Malnutrition Universal Screening Tool (MUST)’ training, was implemented in eight of 10 eligible primary care practices (14 general practitioners and nine practice nurses attended), in seven private nursing homes (20 staff nurses attended) and two health centres (53 community nurses attended) in conjunction with a community dietetics service for patients at risk of malnutrition. Nutritional knowledge was assessed before, immediately after, and 6 months after the intervention using self‐administered, multiple‐choice questionnaires. Reported changes in practice and the acceptability of the education programme were considered using self‐administered questionnaires 6 months after the intervention. Results: A significant increase in nutritional knowledge 6 months after the intervention was observed (P < 0.001). The management of malnutrition was reported to be improved, with 69% (38/55) of healthcare professionals reporting to weigh patients ‘more frequently’, whereas 80% (43/54) reported giving dietary advice to prevent or treat malnutrition. Eighty‐percent (44/55) of healthcare professionals stated that ‘MUST’ was an acceptable nutrition screening tool. Conclusion: An education programme supported by a community dietetics service for patients ‘at risk’ of malnutrition increased the nutritional knowledge and improved the reported management of malnourished patients in the community by healthcare professionals.     

Living and dying: responsibility for end‐of‐life care in care homes without on‐site nursing provision ‐ a prospective study

The aim of the study was to describe the expectations and experiences of end‐of‐life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed‐method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill‐health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to individual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents; ‘talking about dying’ and ‘integrating living and dying’. All participants stated that they were committed to providing end‐of‐life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end‐of‐life care, doubts from care home and primary healthcare staff about their capacity to work together when residents’ trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time.     

Institutional logic in self‐management support: coexistence and diversity

The prevalence of chronic conditions in Europe has been the subject of health‐political reforms that have increasingly targeted collaboration between public, private and voluntary organisations for the purpose of supporting self‐management of long‐term diseases. The international literature describes collaboration across sectors as challenging, which implies that their respective logics are conflicting or incompatible. In line with the European context, recent Norwegian health policy advocates inter‐sectorial partnerships. The aim of this policy is to create networks supporting better self‐management for people with chronic conditions. The purpose of our qualitative study was to map different understandings of self‐management support in private for‐profit, volunteer and public organisations. These organisations are seen as potential self‐management support networks for individuals with chronic conditions in Norway. From December 2012 to April 2013, we conducted 50 semi‐structured interviews with representatives from relevant health and well‐being organisations in different parts of Norway. According to the theoretical framework of institutional logic, representatives’ statements are embedded with organisational understandings. In the analysis, we systematically assessed the representatives’ different understandings of self‐management support. The institutional logic we identified revealed traits of organisational historical backgrounds, and transitions in understanding. We found that the merging of individualism and fellowship in contemporary health policy generates different types of logic in different organisational contexts. The private for‐profit organisations were concerned with the logic of a healthy appearance and mindset, whereas the private non‐profit organisations emphasised fellowship and moral responsibility. Finally, the public, illness‐oriented organisations tended to highlight individual conditions for illness management. Different types of logic may attract different users, and simultaneously, a diversity of logic types may challenge collaboration at the user's expense. Moral implications embed institutional logic implying a change towards individual responsibility for disease. Policy makers ought to consider complexities of logic in order to tailor the different needs of users.     

Roles and identities in transition: boundaries of work and inter‐professional relationships at the interface between telehealth and primary care

Shifting the balance of care towards home and community is viewed as requiring interventions which enhance or complement primary care. Technology‐based interventions are seen as key to the future in this work. Telehealthcare implicates a new agenda for inter‐professional working across boundaries of healthcare. One such interface is between telehealthcare professionals and professionals located in primary care. This study reports the findings from a qualitative study forming part of a broader project examining the potential of developing and implementing telehealth interventions to support patients with long‐term conditions. Semi‐structured interviews were undertaken with telehealth nurse care managers, practice nurses and general practitioners in their respective work settings (39 interviews with 62 participants). Observation was undertaken at a telehealth call centre. The research took place between April 2010 and March 2011. Thematic analysis of qualitative data was undertaken. Telehealth nurse care managers' interviews suggested narrative constructions of new roles and identities to fit telehealth work, combining a holistic ideal and retro‐appeal with ‘traditional’ values of nursing, which distinguished and distanced them from counterparts in general practices. Practice nurses and general practitioners were ambivalent and often sceptical about the contribution of telehealth to long‐term condition work. Practice nurses' accounts suggested a sense of protectiveness about maintaining boundaries around established remits of managing long‐term conditions; general practitioners, having devolved much of the care of long‐term conditions to nurses, were keen to retain their positions as gatekeepers to resources. Perceptions of shifts of professional roles, new ways of working and how they are valued form a relevant contextual element to the introduction of telehealth interventions. A pre‐emptive view and response to how professionals understand and approach increasingly complex and multi‐faceted roles within primary care is likely to prepare and facilitate the introduction and integration of telehealth innovations into existing patient services.     

Health in All local Policies: Lessons learned on intersectoral collaboration in a community‐based health promotion network in Denmark

Health promotion increasingly involves collaboration with civil society organisations and the private sector rather than being implemented exclusively by public sector stakeholders. Health in All Policies (HiAP) is an approach that promotes health in policy‐making across public sectors. This study explored intersectoral integration and collaboration for health promotion at a local community level through a qualitative single case study of a local community network in Denmark: the Husum Health Network. The paper describes and discusses strengths, weaknesses, and challenges of HiAP‐inspired local efforts to build alliances and supportive environments for health within an inter‐organisational community‐based network. The data were generated from participant observations made at 11 meetings and events organised by the network partners and nine qualitative, semi‐structured interviews with Husum Health Network partners conducted from August 2014 to February 2015. The data were analysed using a theoretical framework introduced by Axelsson and Axelsson (2006) to characterise aspects of integration and differentiation between organisations. With high levels of structural and functional differentiation between the partners, the network provided an opportunity to exercise inter‐organisational integration at the local level. Integration was fostered by knowledge sharing, face‐to‐face interaction, and communal events. However, the loose structure of the network was a challenge to its sustainability and achievement. We argue that Health in All local Policies is a meaningful concept in the context of local community development only when referring to the polices and strategies of all stakeholder organisations involved in decision‐making and agenda setting, and not just local government institutions.     

Vouchers for primary healthcare services in an ageing world? The perspectives of elderly voucher recipients in Hong Kong

Considering the ageing population in economically advanced regions across the world, measures are necessary to enhance the health of the older population as well as contain public healthcare spending. Hong Kong implements the Elderly Health Care Voucher Scheme (EHCVS), providing older people aged 65 or above an annual subsidy of visiting private healthcare service providers for chronic disease prevention and management. The services also aim at reallocating demand from the public to private sector as well as improve quality of services. This qualitative study explored the experiences of EHCVS recipients (n = 55, aged 61–94) with eight focus group interviews in Hong Kong in the year 2016. Convenience sampling was used. Research questions were: (1) Why do older people choose not to use EHCVS for preventive as well as disease management services among older people in Hong Kong? (2) What are the barriers to reallocating demand from the public to private sector? (3) In what ways did EHCVS improve the quality of primary care services for older people? Using a deductive and inductive approach, eight qualitative themes were identified. Findings suggested that the non‐targeted services and inadequate knowledge on EHCVS deterred older people from using the vouchers for disease management and prevention. The relatively expensive private services, lack of trust in the private sector, low public clinic fees and good services quality of the public sector, together with inadequate private practitioners in the healthcare market were barriers that hinder demand reallocation. Nevertheless, the quality of primary care services had been improved after the implementation of EHCVS with shortened wait times and opportunities to discuss health‐related issues with private practitioners. Findings were discussed with practice, policy and research implications.     

‘That would have been beneficial’: LGBTQ education for home‐care service providers

This paper reports qualitative findings from a pilot study that explored the lesbian, gay, bisexual, transgender and queer (LGBTQ) education needs of home‐care service providers working in one large, urban Canadian city. The pilot study builds upon research that has documented barriers to health services for diversely situated LGBTQ people, which function to limit access to good‐quality healthcare. LGBTQ activists, organisations and allies have underscored the need for health provider education related to the unique health and service experiences of sexual and gender minority communities. However, the home‐care sector is generally overlooked in this important body of research literature. We used purposeful convenience sampling to conduct four focus groups and two individual interviews with a total of 15 professionally diverse home‐care service providers. Data collection was carried out from January 2011 to July 2012 and data were analysed using grounded theory methods towards the identification of the overarching theme, ‘provider education’ and it had two sub‐themes: (i) experiences of LGBTQ education; and (ii) recommendations for LGBTQ education. The study findings raise important questions about limited and uneven access to adequate LGBTQ education for home‐care service providers, suggest important policy implications for the education and health sectors, and point to the need for anti‐oppression principles in the development of education initiatives.     

A scoping review to understand the effectiveness of linking schemes from healthcare providers to community resources to improve the health and well‐being of people with long‐term conditions

The prevalence of people living with long‐term conditions is increasing, accompanied by an increased expectation that patients will become more involved in self‐management. Long‐term conditions are associated with increased social isolation and poor physical and mental health. But there remains a gap in health provision between providing medical treatment and effectively addressing psychosocial well‐being. One potential way of addressing this gap is by utilising social interventions which link patients from health services to community‐based sources of support. However, the mechanisms involved in the delivery of interventions providing that link and their effectiveness remain unclear. This review adopted the methodological framework for conducting scoping studies, searching for both academic and grey literature on social interventions which link people from healthcare settings to a range of community and voluntary sector organisations. A literature search between May and June 2013, involving five electronic databases, hand searching of two journals and the use of Google search engine, identified seven studies relevant to the review question. In terms of key characteristics and mechanisms of the interventions, mental health conditions and social isolation were the most common reasons for referral to the interventions, and referrals were usually made through general practices. Almost all the interventions were facilitator‐led, whereby the facilitator worked to identify and link participants to appropriate community‐based resources. In regard to health and social outcomes and their cost‐effectiveness, studies reported improvement to participants' psychological and social well‐being as well as their decreased use of health services, although there were limited measures of participants' physical health outcomes. Interventions for linking patients from healthcare setting to community‐based resources target and address psychosocial needs of participants. The review identified involvement of health professionals in aiding the referral of patients to the intervention and the role of the intervention facilitators as key components of the interventions.     

Organising through compassion: The introduction of meta‐virtue management in the NHS

This paper investigates the comprehensive compassionate care reform programme within the National Health Service (NHS) in England. Through a synoptic reading of policy documents, we show how ‘compassion’ is introduced as an overarching meta‐virtue designed to govern relationships and formal positions in health care. Invoking an ‘ethics of office’ perspective, mainly drawing on the thinking of Max Weber, we evaluate the promotion of compassion as a managerial technology and argue how seemingly humanistic and value‐based approaches to healthcare management might have unintended consequences for the quality of care and the conduct of health professionals that in some ways resemble and in some ways exceed those of the more traditional New Public Management measures, which the new compassion paradigm is expected to outdo. In the paper's final sections, we turn to the original work of the nursing icon Florence Nightingale to argue that compassion and other virtues should continuously be formulated and re‐formulated in relation to the role‐specific skills and duties of particular offices in the healthcare sector.     

Equipping clinical leaders for system and service improvements in quality and safety: an Australian experience

Objective : To develop clinical leadership among health professionals working in public sector organisations to improve their skills in ensuring high quality and safe health services. Methods : A longitudinal pre‐post‐intervention mixed methods study that included 60 health professionals working in one state in Australia. Results : The program was successful in the development of clinical leaders. Conclusions : An interdisciplinary, inter‐sectoral leadership development program involving health professionals from metropolitan, regional and rural areas can be successful in developing knowledge, skills and competencies among these health professionals in health service quality and safety. Implications : Health professionals can participate in a development program to enhance their clinical leadership skills. While this was a post‐qualification course, targeting experienced health professionals, the learnings could be applied to pre‐qualification education of health professionals.     

Public health. Trail blazers

Public health professionals have expressed concern at the decision to give the NHS overall control of joint services. For joint working to be effective management has to be set from both the primary care trust and local authority. Pooling information between the two organisations allows a better understanding of the population and its health.     

Understanding the limitations of “quasi‐mandatory” approaches to enrolment in community‐based health insurance: Empirical evidence from Tanzania

In recent decades, a growing number of low‐income countries (LICs) have experimented with voluntary community‐based health insurance (CBHI), as an instrument to extend social health protection to the rural poor and the informal sector. While modest successes have been achieved, important challenges remain with regard to the recruitment and retention of members, and the regular collection of membership fees. In this context, there is a growing consensus among policymakers that there is a need to experiment with mandatory approaches towards CBHI. In some localities in Tanzania, local actors in charge of community health funds (CHFs) are now relying on what is best described as quasi‐mandatory enrolment strategies, such as increasing user fees for non‐members, automatically enrolling beneficiaries of cash transfer programmes and enrolling the exempted groups (people who are entitled to free healthcare). We find that, while these quasi‐mandatory enrolment strategies may temporarily increase enrolment rates, dropout and the non‐payment of contributions remain important problems. These problems are at least partly related to supply side issues, notably to inadequate benefit packages. Overall, these findings indicate the limitations of any strategy to increase enrolment into CBHI, which is not coupled to clear improvements in the supply and quality of healthcare.