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Community Engagement in a complex intervention to improve access to primary mental health care for hard-to-reach groups

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Community Engagement in a complex intervention to improve access to primary mental health care for hard-to-reach groups
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  Community Engagement in a complex interventionto improve access to primary mental health carefor hard-to-reach groups  Jonathan Lamb PhD,* Christopher Dowrick MD, †  Heather Burroughs PhD, ‡  Susan BeattyPhD,* Suzanne Edwards PhD, §  Kate Bristow PhD, –  Pam Clarke MSc, ††  Jonathan HammondMSc, ‡‡  Waquas Waheed MD, §§  Mark Gabbay MD †  and Linda Gask PhD** *Research Associate, **Professor,  ‡‡ PhD Student,  §§ Academic Consultant Psychiatrist, Centre for Primary Care, Institute of Population Health, University of Manchester, Manchester,  † Professor,  § Lecturer,  – Research Fellow,  †† PhD Student, Instituteof Psychology Health and Society, University of Liverpool, Liverpool and  ‡ Research Fellow, Institute of Primary Care andHealth Sciences, Keele University, Keele, UK Correspondence Dr Jonathan LambCentre for Primary CareUniversity of Manchester 5 th FloorWilliamson BuildingOxford RoadManchester M 13 9 PLUKE-mail: jonathan.lamb@manchester.ac.uk  Accepted for publication 2  September  2014 Keywords:  action research, BME,community engagement, evaluation,interventions, mental health  Abstract Background  Despite the availability of effective evidence-basedtreatments for depression and anxiety, many ‘harder-to-reach’social and patient groups experience difficulties accessing treat-ment. We developed a complex intervention, the AMP (ImprovingAccess to Mental Health in Primary Care) programme, whichcombined community engagement (CE), tailored (individual andgroup) psychosocial interventions and primary care involvement. Objectives  To develop and evaluate a model for communityengagement component of the complex intervention. This paperfocuses on the development of relationships between stakeholders,their engagement with the issue of access to mental health andwith the programme through the CE model. Design  Our evaluation draws on process data, qualitative inter-views and focus groups, brought together through frameworkanalysis to evaluate the issues and challenges encountered. Setting & participants  A case study of the South Asian commu-nity project carried out in Longsight in Greater Manchester,United Kingdom. Key findings  Complex problems require multiple local stakehold-ers to work in concert. Assets based approaches implicitly makedemands on scarce time and resources. Community developmentapproaches have many benefits, but perceptions of open-endedinvestment are a barrier. The time-limited nature of a CE interven-tion provides an impetus to ‘do it now’, allowing stakeholders tonegotiate their investment over time and accommodating theirwider commitments. Both tangible outcomes and recognition of process benefits were vital in maintaining involvement. 1 ª  2014  John Wiley & Sons Ltd Health Expectations doi: 10.1111/hex.12272  Conclusions  CE interventions can play a key role in improvingaccessibility and acceptability by engaging patients, the public andpractitioners in research and in the local service ecology. Introduction A wide range of interventions are effective inimproving outcomes of common but disablingmental health problems such as depression andanxiety. 1,2 However, many groups with highlevels of mental distress are disadvantagedbecause care is not available to them in theright place and time, or when they access it,their interaction with caregivers deters helpseeking or diverts it into forms that do notaddress their needs. Drawing on a systematicreviews, 3,4 secondary analysis of existing datasets 5,6 and a conceptual review, 7 we developeda complex intervention to improve access tomental health in primary care comprising threeinter-related components: community engage-ment (CE), promoting well-being (comprisingoffer of a psychosocial therapeutic interven-tion) and improving quality of primary careprovision.This paper provides an overview of the ratio-nale behind the CE model adopted to meet theaims of the wider Access to Mental Health inPrimary Care (AMP) Programme 8 and describesits implementation and evaluation. Background: design for CommunityEngagement in the context of a complex intervention Community engagement, which has beendefined as: ‘building active and sustainable communitiesbased on social justice, mutual respect, participa-tion, equality, learning and cooperation. Itinvolves changing power structures to remove thebarriers that prevent people from participating inthe issues that affect their lives’ 9 Has become a routine practice in many areasof health and public service provision and insome areas of research. 10  –  16 The diverse aimsand methods involved have led to a profusionof approaches, models and toolkits.We undertook an extensive critical literaturereview of existing approaches. No single off-the-shelf approach met the needs of the pro-gramme. Accordingly, we drew pragmaticallyon a range of perspectives and techniques thathave previously been used in CE for addressinghealth issues. 17 Central to the intervention design was anunderstanding of access, treatment and recov-ery as a dynamic and often protracted set of processes and decisions, involving not onlypatients and health practitioners but also con-tingent on a wider range of community stake-holders and resources. 18 Improving access forunder-served groups can involve addressingany of the barriers in the pathway: from peoplerecognizing they may need help; to seeking,negotiating and engaging in treatment; tonavigating successful treatment resolution andembedding effective self-management. 19 Wedetermined that the nature, scale and impact of barriers and facilitators at the local level, aswell as how they might best be approached,could only be understood by engaging activelywith our target communities.The CE model was conceived as an inductivecommunity problem solving activity 18 (Fig. 1).In drawing on the roots of action research, we Figure  1  Common policy or problem-solving cycle. ª  2014  John Wiley & Sons Ltd Health Expectations CE in Complex Mental Health Intervention, J Lamb  et al. 2  found a common ground between well-knownapproaches in health service improvement 20 and community-based participatory research. 21 Aims were negotiated, augmented, refined andadapted through engagement as an integral partof the process. The role of the interventionteam was to facilitate local action and localpartnerships. It was envisaged that thisapproach would help stakeholders to continuebeyond the intervention time frame by recog-nizing, utilizing and developing both local andwider resources.The approach emphasizes involving the com-munity in reflecting on the problems andissues, and producing considered action at thelocal level in the relatively short time frameavailable. It allows for proactively buildingtrust, key when working with under-servedcommunities with complex unmet mentalhealth needs. The active collaborative partici-pation involves local people and service provid-ers in both negotiating and delivering on theagreed aims. Drawing on the wider traditionsof action research, this can be seen as empow-erment through action and delivery. 22  –  25 Methods Aims The CE component addressed four overarchingprogramme aims (see Box 1).The main focus of this paper is on the sec-ond aim: relationships between stakeholders,their engagement with the issue of access tomental health and with the programmethrough the CE model between 2010 and 2012. Design of the community engagement model Drawing on Lewin’s 18 ‘spirals’ of actionresearch, our CE model involved four inductivecomponents, implemented in sequence (seeBox 2). Information gathering Whilst our initial reviews provided key find-ings, knowledge and best practice in workingwith under-served groups, they could not tellus about the specific issues in the interventionlocalities.Information gathering was also the first stepin building the trust and networks necessaryfor successful engagement. It involved theintervention team getting to know the localarea, communities and stakeholders and under-standing the range of issues related to mentalhealth and access from local people’s own per-spectives.We developed a research strategy drawingon the ethnographic tradition 26 and incorporat-ing recent methodological refinements. 27 Infor-mation-gathering lasted for about three monthsand involved three overlapping approaches: Box 1  Aims of the Community Engagement interventionDevelop Knowledge To develop our knowledge of the range of understandings and attitudes about mentalhealth and wellbeing in the communityNetworks and Partnerships To develop local networks (required for the primary care training and thepsychosocial intervention) to design and implement CE with these partnersAddressing Barriersto Access  –   Candidacy 19 To address stigma and the acceptability of seeking help and identify the practicalbarriers to engaging in treatment; to use this knowledge and these networks to addressbarriers to mental health-care access and tailor health literacy approaches to improveawareness of mental health issues in the community,including, how, when and where to seek helpEmbedding Gainsand Agenda  –   Recursvity 37 To embed gains, foster relationships and raise the issue of improving access tomental health care, to impact on issues beyond the intervention time frame. ª  2014  John Wiley & Sons Ltd Health Expectations CE in Complex Mental Health Intervention, J Lamb  et al.  3  1.  Entry to the field  : getting to know thelocalities and people and the experience of life in these communities. We used internetsearches and site visits to identify localservice providers and events where wecould meet local people. We invited themto participate in ‘go-along’ interviews,showing us around the local neighbour-hood, telling us about local people, com-munities, the area and how they live theireveryday lives. 2.  Go-Along interviews  using snowball sam-pling 28 from distinct start points located inthe community (e.g. leaders, media, localbusiness, education, police, health and socialcare providers, and within the voluntary sec-tor). Accessing participants through localsocial networks allowed us to engage withpeople who would not be reached by sam-pling only from those in contact with formalservices. 3.  Mapping and collation  of existing commu-nity data, using a snowball approach withstarting points in primary care, publichealth, social care, voluntary sector, com-munity media and local businesses. Box   2  Design of the Community Engagement modelComponent DescriptionInformation gathering Consistent with aims  1  and  4  (see Box   1  ), identifies and engages withstakeholders for the following phases, which go on to address aims 2 and 3. The aims  of information gathering were to: 1  Discover the range of understandings of mental health and well-being heldby local people and communities 2  Understand the wider issues which affect mental health and access totreatment at the local level 3  Identify local community champions, partner organizations andwider community resources 4  Develop a database of contacts and organizations to inform psychosocialinterventions and primary care training 5  Identify local stakeholders for community focus groupsCommunity focus groups (CFGs) Six-monthly meeting of local stakeholders across the programme to providefeedback, priorities for action and strategic direction.The main roles of the CFG were to: 1  bring together key local stakeholders 2  test and refine findings of the information gathering phase 3  clarify problems, resources and priorities for action acrossdifferent areas of expertise 4  negotiate goals:i short-term: what can be progressed now (including by the CWG)ii mid-term: what needs to be achieved during the intervention life-cycleiii longer term: issues requiring strategic action, advancing mental healthand well-being in wider agendas at the local level and developing a sharedvision to address problems and their treatment.Community champions Champions were the day-to-day contact and face of the programme in thecommunity, organizing and driving the activities identified in the CFG.Community working groups (CWGs) Monthly meeting of stakeholders working together toimplement activities decided in CFG. ª  2014  John Wiley & Sons Ltd Health Expectations CE in Complex Mental Health Intervention, J Lamb  et al. 4  These enabled development of: 1.  Initial models of mental health understand-ings within the community 2.  Key engagement messages 3.  A database of contacts, projects andresources across health, social, voluntaryand community sectors 4.  Communications strategy  –   through identifi-cation of local community nodes, informa-tion points, media and key actors.Our information gathering was built on eth-nographic principles that the interviewee is theexpert, 26 and on the recognition that anyknowledge we gained about the communitywould always be contingent, positional andincomplete. Community champions The Community Champion employed by theAMP programme in each locality was the pri-mary day-to-day contact for the communityand facilitated the community focus group(CFG) and community working group (CWG).These were part-time appointments funded bythe AMP programme. Senior members of theAMP research team supported each commu-nity champion. Community focus groups The Community focus groups (CFGs) wereforums to negotiate the aims and agenda of theintervention with local people, agencies andwider stakeholders. The CFGs met every sixmonths or so over a period of 2 years (seeBox 3). We expected the CFGs to play animportant role in negotiating different agendasbetween local service providers and to providethe strategic level buy-in that was essential formany organisations if their workers were todedicate time to participating in the workinggroups. It is important to emphasize thatCFGs are not ‘focus groups’ as conventionallyunderstood in the context of academic work.However, we found the term ‘CommunityFocus Group’ was the most useful and accept-able for communicating the broad intent of thegroup to a diverse range of stakeholders inway that all could understand and would bekeen to engage with.Membership of the CFGs was drawn fromthe contact list developed in the communitymapping phase. They included primary careand wider health sector workers (health pro-fessionals and policy makers), members of voluntary or third sector organizations, faith Box   3  Community Focus Group (CFG) participationCFG  1  CFG  2  CFG  3  CFG  4 Third sector  4 3 7 5 Third sector (Bangladeshi)  0 0 2 3 Police  2 0 0 0 Faith leaders  1 0 0 0 GPs  2 0 1 0 Practice managers  2 1 1 1 Public health  0 1 1 1 Mental health counsellor (GPs)  0 1 2 1 Domestic violence counsellor  0 0 1 1 Teacher (secondary)  0 0 1 0 AMP research team  4 5 8 4 Community champion  0 1 1 1 Total  15 11 25 17 ª  2014  John Wiley & Sons Ltd Health Expectations CE in Complex Mental Health Intervention, J Lamb  et al.  5
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