Search

In the health field, there is great interest in the role empowerment might play in reducing social inequalities in health. Empowerment is understood here as the processes of developing capabilities that individuals and/or communities need to exercise control over decisions and actions impacting on their lives and health. There is a fundamental problem, however, in identifying and measuring capabilities for collective control that emerge at the level of the collective, with much of the existing literature focusing on individual measures even where community-level processes are concerned. Collective measures need to capture the dynamics of interactions within and between groups, not simply aggregate individual-level measures. This article, Part 2 in a three-part series, takes up the challenge of identifying qualitative markers of capabilities for collective control. We applied the emancipatory power framework (EPF) reported in Part 1 of the series, to qualitative data generated during a longitudinal evaluation of a major English area-based empowerment initiative, the Big Local (BL). We identified empirical 'markers' of shifts towards greater collective control pertaining to each of the 'power' dimensions in the EPF—'power within', 'power with' and 'power to'—and markers of communities exercising 'power over' other institutions/community members. These markers can usefully be applied in the evaluation planning and evaluation of empowerment initiatives. Part 3 in the series uses these markers and a second analytical framework developed during our evaluation of BL to explore how power dynamics unfold in participatory spaces in BL neighbourhoods. [ABSTRACT FROM AUTHOR]

This article—third in a series of three—uses theoretical frameworks described in Part 1, and empirical markers reported in Part 2, to present evidence on how power dynamics shifted during the early years of a major English community empowerment initiative. We demonstrate how the capabilities disadvantaged communities require to exercise collective control over decisions/actions impacting on their lives and health (conceptualized as emancipatory power) and the exercise of power over these communities (conceptualized as limiting power) were shaped by the characteristics of participatory spaces created by and/or associated with this initiative. Two main types of participatory spaces were identified: governance and sense-making. Though all forms of emancipatory power emerged in all spaces, some were more evident in particular spaces. In governance spaces , the development and enactment of ' power to ' emerged as residents made formal decisions on action, allocated resources and managed accountability. Capabilities for alliance building— power with —were more likely to emerge in these spaces, as was residents' resistance to the exercise of institutional power over them. In contrast, in sense-making spaces residents met informally and 'made sense' of local issues and their ability to influence these. These processes led to the development of power within capabilities and power to resist stigmatizing forms of productive power. The findings highlight the importance of designing community initiatives that: nurture diverse participatory spaces; attend to connectivity between spaces; and identify and act on existing power dynamics undermining capabilities for collective control in disadvantaged communities. [ABSTRACT FROM AUTHOR]

Aim: To develop a simple health literacy intervention aimed at supporting informed reproductive choice among members of UK communities practising customary consanguineous marriage. Background: The contribution of 'health literacy' to reducing health inequalities and improving primary health-care efficiency is increasingly recognised. Enhancing genetic literacy has received particular attention recently. Consanguineous marriage is customarily practised among some UK minority ethnic communities and carries some increased risk of recessive genetic disorders among offspring compared with unions among unrelated partners. The need to enhance genetic literacy on this issue has been highlighted, but no national response has ensued. Instead, a range of undocumented local responses are emerging. Important knowledge gaps remain regarding how the development and implementation of culturally appropriate, effective and sustainable responses can be achieved. Methods: Our co-design approach involved active participation by local people. Initial insight generation employed six focus group discussions and 14 individual interviews to describe current understandings and information needs. A total of 11 personas (heuristic narrative portraits of community 'segments') resulted; four participatory workshops provided further understanding of: preferred information channels; feasible information conveyance; and responses to existing materials. Prototype information resources were then developed and feedback gathered via two workshops. Following further refinement, final feedback from health-care professionals and community members ensured accuracy and appropriateness. Findings: The project demonstrated the utility of co-design for addressing an issue often considered complex and sensitive. With careful planning and orchestration, active participation by diverse community members was achieved. Key learning included: the importance of establishing trusting and respectful relationships; responding to diversity within the community; and engendering a creative and enjoyable experience. The resultant materials were heavily shaped by local involvement. Evaluative work is now needed to assess impacts on knowledge and service uptake. Longer term sustainability will depend on whether innovative community-level work is accompanied by broader strategy including investment in services and professional development. [ABSTRACT FROM AUTHOR]

Abstract: Recent UK welfare reforms have been less successful than expected by the Government in supporting unemployed people with long‐term illness into work. Frontline workers remain a core element of the new welfare‐to‐work machinery, but operate within a changed organisational and policy landscape. These changes raise important questions regarding whether and how claimants’ health‐related barriers to work are considered. This paper examines the UK welfare‐to‐work frontline worker's role with claimants who have long‐term illness. Fieldwork observations in three not‐for‐profit employment support services and semi‐structured interviews with 29 participants (claimants, frontline workers, healthcare professionals and managers) were conducted between 2011 and 2012. Participant observation of the wider welfare‐to‐work arena was initiated in 2009 and continued until 2013. A qualitative methodology drawing on ethnographic principles was adopted. Thematic analysis of the data was carried out. The findings show that the frontline worker plays a key role in assessing and addressing claimants’ health‐related barriers to work. Two important health‐related role dimensions were identified: a health promoter role which involved giving health promotional advice to claimants about their general health; and a health monitor role which involved observing and questioning claimants about their general health. Frontline workers’ practice approaches were shaped by organisational and individual factors. Integration between the National Health Service and employment support services was limited, and the findings suggested improvements were required to ensure an adequate response to claimants’ health‐related needs to support their journey into work. [ABSTRACT FROM AUTHOR]

It is now widely accepted that context matters in evaluations of the health inequalities impact of community-based social initiatives. Systems thinking offers a lens for uncovering the dynamic relationship between such initiatives and their social contexts. However, there are very few examples that show how a systems approach can be applied in practice and what kinds of evidence are produced when this happens. In this paper, we use data from ethnographic fieldwork embedded within a multi-site mixed method evaluation to demonstrate how a systems approach can be applied in practice to evaluate the early stages of an area-based empowerment initiative – Big Local (funded by the Big Lottery Fund and delivered by Local Trust). Taking place in 150 different local areas in England and underpinned by an ethos of resident-led collective action, Big Local offers an illustration of the applicability of a systems approach to better understand the change processes that emerge as social initiatives embed and co-evolve within a series of local contexts. Findings reveal which parts of the social system are likely to be changed, by what mechanisms, and with what implications. They also raise some salient considerations for knowledge generation and methods development in public health evaluation, particularly for the evaluation of social initiatives where change does not necessarily happen in linear or predictable ways. We suggest future evaluations of such initiatives require the use of more flexible designs, encompassing qualitative approaches capable of capturing the complexity of relational systems processes, alongside more traditional quantitative methods. [ABSTRACT FROM PUBLISHER]

Aim: To report the use of a community participatory approach (PA) in a project investigating tuberculosis (TB) in UK Somali migrants. Background: It is crucial to address health inequalities and persistent health problems, particularly in groups who are often excluded or seem hard to reach. TB is an illness stigmatised in the Somali population, making it a difficult topic for research. In this study, a community PA was used to investigate TB and members of the Somali community were recruited as co-researchers. Data sources: Four community researchers (CRs), eight focus groups (n=48), interviews with members of the community (n=24), people with TB and ex-TB patients (n=14), and healthcare practitioners (n=18). Review methods: This is an informative paper. Discussion: The paper describes the approach used in the recruitment of community researchers and how engaging early with community leaders using oral communication made it possible to research TB in the Somali community. Conclusion: The PA led to capacity building, trust and a longer sustainable partnership with members of the Somali community. The success of the approach in the study suggests that there are valuable lessons for those researching similar topics with minority groups. Implications for practice/research Involving people in health research topics with a stigma is possible. This paper highlights how this could be achieved using a community PA and the recruitment of community members as co-researchers. However, the PA is time-consuming and will depend on the skills of academic researchers in knowing and engaging with the community. [ABSTRACT FROM AUTHOR]

Evidence suggests national- and community-level interventions are not reaching women living at the economic and social margins of society in Pakistan. We conducted a 10-month qualitative study (May 2010-February 2011) in a village in Punjab, Pakistan. Data were collected using 94 in-depth interviews, 11 focus group discussions, 134 observational sessions, and 5 maternal death case studies. Despite awareness of birth complications and treatment options, poverty and dependence on richer, higher-caste people for cash transfers or loans prevented women from accessing required care. There is a need to end the invisibility of low-caste groups in Pakistani health care policy. Technical improvements in maternal health care services should be supported to counter social and economic marginalization so progress can be made toward Millennium Development Goal 5 in Pakistan. [ABSTRACT FROM AUTHOR]

Abstract: The Pakistan Lady Health Worker (LHW) program provides door-step reproductive health services in a context where patriarchal norms of seclusion constrain women's access to health care facilities. The program has not achieved optimal functioning, particularly in relation to raising levels of contraceptive use. One reason may be that the LHWs face the same mobility constraints that necessitated their appointment. Past research has documented the influence of gendered norms and extended family (biradari) relationships on rural women's mobility patterns. This study explores whether and how these socio-cultural factors also impact LHWs' home-visit rates. A mixed-method study was conducted across 21 villages in one district of Punjab in 2009–2010. Social mapping exercises with 21 LHWs were used to identify and survey 803 women of reproductive age. The survey data and maps were linked to visually delineate the LHWs' visitation patterns. In-depth interviews were conducted with 21 LHWs and 27 community members. Members of a LHW's biradari had two times higher odds of reporting a visit by their LHW and were twice as likely to be satisfied with their supply of contraceptives. Qualitative data showed that LHWs mobility led to a loss of status of women performing this role. Movement into space occupied by unrelated males was particularly shameful. Caste-based village hierarchies further discouraged visits beyond biradari boundaries. In response to these normative proscriptions, LHWs adopted strategies to reduce the amount of home visiting undertaken and to avoid visits to non-biradari homes. The findings suggest that LHW performance is constrained by both gender and biradari/caste-based hierarchies. Further, since LHWs tended to be poor and low caste, and at the same time preferentially visited co-members of their extended family who are likely to share similar socioeconomic circumstances, the program may be differentially providing health care services to poorer households, albeit through an unintended route. [Copyright &y& Elsevier]

There is concern that current UK policy and intervention aimed at supporting fathers remains primarily informed by dominant White middle-class values and experiences, and therefore fails to respond adequately to the needs of Britain's diverse fathers. This paper contributes to understanding of ethnic diversity in fathering contexts, practices and experiences, by reporting findings from a qualitative study of British Asian fathers, involving in-depth interviews with fifty-nine fathers and thirty-three mothers from Bangladeshi Muslim, Pakistani Muslim, Gujarati Hindu and Punjabi Sikh background, and over eight additional respondents engaged through Key Informant interviews, ethnographic interviews and group discussions. The paper highlights four areas that require greater recognition by policy-makers and practitioners to appropriately meet the needs of fathers from diverse ethnic and socio-economic backgrounds. These are: recognising that fathers and mothers do not necessarily constitute an autonomous unit; appreciating diversity in fathers’ understandings of desirable child outcomes; addressing additional obstacles to achieving similar outcomes for children; and understanding that the boundaries and content of fathering are not universally recognised. Policies that are less normative and more responsive to diversity are essential to ensure that all fathers can be effectively supported. [ABSTRACT FROM PUBLISHER]

Purpose – The purpose of this paper is to explore potential benefits in aligning Joint Strategic Needs Assessments (JSNAs) with implementation of the Equality Delivery System (EDS) to improve commissioning of healthcare for minority ethnic groups. Design/methodology/approach – The paper draws on data gathered for a large research study carried out in England exploring the use of evidence in commissioning for multi-ethnic populations, to present a reflective discussion on the potential synergies between JSNA and EDS processes. Qualitative data were collected from 62 interviews with stakeholders in Sheffield, Leeds and Bradford, who, as part of their normal role, had an active responsibility to contribute to decision making for commissioning healthcare. 19 individuals working in national roles with experience in evidence use, ethnicity and commissioning across NHS, local authorities and third sector were also interviewed. Observational data were collected through regular attendance at an NHS Equality Group, which had Equality Delivery System implementation within its remit, and from a regional workshop focussing on Joint Strategic Needs Assessment improvements. Observations also came via participation in local EDS implementation meetings across Sheffield, Leeds and Bradford. These data were supplemented by a review of local and national policy literature about implementing JSNA and EDS. Findings – Formally strengthening the connection between JSNAs and the EDS has potential benefits for enhancing the evidence base about health and wellbeing needs of minority groups in general, and ethnic minorities in particular. Originality/value – NHS and Local Authority organisations need to establish structural processes to formally connect these two workstreams and to ensure adequate resource is made available, with clear direction from senior management. [ABSTRACT FROM AUTHOR]

Purpose – The authors examined the cardiac care pathway with the aim of identifying factors that impact on diagnosis and treatment of coronary heart disease in British Pakistani women. Design/methodology/approach – This is an exploratory qualitative study. In depth interviews and focus groups with an opportunistic sample of Pakistani women and a purposive sample of clinicians working at different points along the care pathway were conducted. The authors used a pathways to care approach to illustrate how their individual and cumulative effect may contribute to differential receipt of treatment, including revascularisation, and health inequalities. Findings – Four major issues were identified: complex life circumstances; "atypical" presentation and symptomatology; problems related to investigative testing; and poor communication. Mapping these barriers onto the Pathways to Care Model provided valuable insight into their impact on patients' progression through the different stages of the care pathway. Research limitations/implications – Adopting a care pathway approach demonstrated how individual factors have an impact at several points along the care pathway. It indicated where further, more detailed enquiry is merited and where intervention studies might usefully be directed to improve care. Practical implications – Examining the whole care pathway identified areas of service improvement that merit a co-ordinated response. Originality/value – The framework provided by the Pathways to Care Model offered insight into the causes of the previously observed attenuation in women's progress along the cardiac diagnosis and treatment pathway and is an important first step to addressing this health inequality in a holistic way. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities (ID) may not be able to access and respond to uniformly delivered health interventions. Public bodies have a legal duty to make 'reasonable adjustments' to policies and practices to provide fair access and treatment for people with ID. This study aimed to identify adjustments to the Slimming World weight management programme to improve accessibility and assess acceptability and feasibility for this population. Methods: This user-centred qualitative study was carried out with a steering group of people with ID (n = 4). Barriers and facilitators to using Slimming World were identified through interviews and focus groups with people with ID (n = 54), carers (n = 12) current members with ID (n = 8) and Slimming World group leaders (n = 11). Adjustments were made and their feasibility and acceptability were explored in a before-and-after mixed methods study where people with ID attended Slimming World for eight weeks. Participants (n = 9), carers (n = 7) and Slimming World group leaders (n = 4) were interviewed to explore their experiences of the adjustments. Participants were weighed at baseline then each week. Results: Four key adjustments were identified and addressed by Slimming World who developed prototype Easy Read materials and a letter for carers. Six of the nine participants attended Slimming World for eight weeks and lost weight (1.4 kg to 6.6 kg, reduction in BMI between 0.5 and 1.7 kg/m2), indicating that the adjustments were feasible and acceptable. Two participants dropped out because they felt uncomfortable in a mainstream group and another left because they lacked control over food choice in their residential setting. Conclusions: This user-centred approach identified reasonable adjustments that were feasible to implement. In a small uncontrolled feasibility study, people with ID were positive about the adjustments and lost weight. However, issues in the wider context of people's lives, such as obesogenic environments and concerns about joining mainstream groups, limited the acceptability of Slimming World even with these adjustments. These findings have important implications for policy and suggest that environmental and organisational level interventions are needed alongside those targeting individual behaviour to tackle the obesogenic environment in which many people with ID spend their time, in order to reduce inequalities associated with the consequences of obesity. [ABSTRACT FROM AUTHOR]

Abstract: Despite rising uptake of maternal healthcare in Pakistan, inequities persist. To-date, attempts to explain and address these differentials have focused predominantly on increasing awareness, geographic and financial accessibility. However, in a context where 70% of healthcare is private sector provided, it becomes pertinent to consider the value associated with this good. This study examined patterns of maternal healthcare use across socioeconomic groups within a rural community, and the meanings and values attached to this behaviour, to provide new insight into the causes of persistent inequity. A 10-month qualitative study was conducted in rural Punjab, Pakistan in 2010/11. Data were generated using 94 in-depth interviews, 11 focus group discussions and 134 observational sessions. Twenty-one pregnant women were followed longitudinally as case studies. The village was comprised of distinct social groups organised within a caste-based hierarchy. Complex patterns of maternal healthcare use were found, linked not only to material resources but also to the apparent social status associated with particular consumption patterns. The highest social group primarily used free public sector services; their social position ensuring receipt of acceptable care. The richer members of the middle social group used a local private midwife and actively constructed this behaviour as a symbol of wealth and status. Poorer members of this group felt pressure to use the afore-mentioned midwife despite the associated financial burden. The lowest social group lacked financial resources to use private sector services and opted instead to avoid use altogether and, in cases of complications, use public services. Han, Nunes, and Dreze's (2010) model of status consumption offers insight into these unexpected usage patterns. Privatization of healthcare within highly hierarchical societies may be susceptible to status consumption, resulting in unforeseen patterns of use and persistent inequities. To-date these influences have not been widely recognised, but they deserve greater scrutiny by researchers and policy-makers given the persistence of the private sector. [Copyright &y& Elsevier]