Significant elements of community involvement in participatory action research: evidence from a community project

Significant elements of community involvement in participatory action research: evidence from a community project ¶Participatory action research (PAR) has been heralded as an important research methodology to address issues of research relevance, community involvement, democracy, emancipation and liberation. Increasingly, nurse researchers are turning to PAR as a method of choice. Although nursing interest in PAR is expanding little is known about how to successfully involve the community in research. This article attends to this dearth of information by presenting the results of a study investigating the significant elements of community involvement in PAR. Through the use of qualitative research methods, five themes emerged that describe the community participation process: (a) planning for participation, (b) the structural components of community participation, (c) living the philosophy, (d) enhancing the credibility, and (e) the type of leadership required to facilitate community participation. It is hoped that by sharing these results others may consider the knowledge gleaned from this project as they plan and proceed with the challenges and rewards inherent in PAR.     

Substance misuse and the social work ethos

The contribution which social work can make to the resolution or minimization of problems stemming from the use of alcohol and drugs is best understood in the context of the profession's ethos. This ethos is one which, unlike that of most other caring professions, retains and encourages a sense of scepticism concerning the prospect of technical or scientific solutions to these problems, preferring to work explicitly within the sphere of policy and of value issues. Three major themes (the person-in-environment, the strengths perspective and the emphasis on service provision) are looked at in the context of Irish social work.     

Striving for independence: experiences and needs of service users with life limiting conditions

Title.  Striving for independence: experiences and needs of service users with lifelimiting conditions.
Aim.  This paper is a report of a study to explore what service users with a range of life-limiting conditions identify as their key experiences and needs generally and, specifically, from health and social care services.
Background.  Whilst internationally palliative care has a primary focus on service users who have cancer, there is growing evidence that those with non-cancer life-limiting conditions have similar palliative care needs. The literature has mainly been focused on independence, choice and control at an individual level, with wider influences on the maintenance or attainment of independence ignored.
Method.  A participatory approach was used in 2003–2004, with both the researcher and a group of service users working together in all stages of the study. Twenty-five participants in receipt of support from an acute hospital, primary care, social services and a hospice took part. Face-to-face individual interviews and small discussion groups were conducted and data were analysed thematically.
Findings.  Eight different but interconnected themes were identified. Independence/dependence was an overarching theme, with negotiation between independence and dependence being evident across all themes. This theme and the influence of health and social care services on the experience of living with life-limiting conditions are the focus of this paper.
Conclusion.  Palliative care and practitioners should focus on maximizing independence at both the individual and structural levels. How services for those with life-limiting conditions are provided and relationships with health and social care staff can directly impact on an individual's experience of independence, choice and control.     

Developing a service user facilitated, interactive case study--a reflective and evaluative account of a teaching method

This article describes the development and ongoing evaluation of a method of service user facilitated case study in health and social care education in a U.K. University. An action research approach (Norton 2009) has been used in which the aim of the work is to improve personal practice with the aim of enhancing the student experience. The paper is written from the perspective of the service user with support from an academic colleague. The paper describes how a narrative monologue, over time is developed into an interactive case study. In draws upon literature from service user involvement, case study and pedagogic action research. The research group are health and social care students both under and post-graduates. Analysis is via a session evaluation form. Thematic analysis draws out key themes. Firstly that first person accounts have a reasonance and interest with students. Secondly that the built in thinking time helps students to develop their reflection and critical thinking skills. Furthermore a theme emerges on how the technique supports students with their future careers. Finally the author reflects on how the approach enables the development of teaching practice and enhanced student learning.     

Mental health policy and mental health service user perspectives on involvement: a discourse analysis

AIM: This paper is a report of an exploration of the concept of service user involvement in mental health nursing using a discourse analysis approach. BACKGROUND: Service user involvement has come to be expected in mental health nursing policy and practice. This concept, however, is often applied somewhat ambiguously and some writers call for a clearer understanding of what service users actually want. METHOD: A Foucauldian discourse analysis was conducted in 2005, examining literature and health policies published by the United Kingdom government and service users. The discursive perspectives of both were explored and conceptual themes were generated from the data. FINDINGS: Concepts occurring within government discourse include language relating to service users, the notion of service user involvement and power. Concepts from the service user discourse include power, change and control, theory, policy and practice, and experiential expertise. Differences in perspectives were found within these themes which distinguished government from service user discourses. Greater flexibility in ideas and perspectives was demonstrated by service users, with a seemingly greater range of theoretical underpinnings. CONCLUSION: Greater awareness is needed of the significance of language, of how subtle inferences may be drawn from the rhetorical language of policies, of how these might affect the involvement of service users, and of the implications for the role of mental health nurses. Nurses need to be aware of these tensions and conflicts in managing their practice and in creating a mental health nursing philosophy of 'involvement'. If true 'involvement' is to ensue, nurses may also need to consider the transfer of power to service users.     

Transforming the experience of cancer care: a qualitative study of a hospital-based volunteer psychosocial support service

Purpose  As volunteer support services for cancer patients evolve and seek to gain credibility and acceptance, it is important that these services be carefully evaluated. This paper describes findings from a research study conducted by the Healing Beyond the Body (HBB) program, a hospital-based volunteer psychosocial support service in a comprehensive cancer center in Toronto, Canada. The goal of this study was to gain insight into the experience of patients who have interacted with HBB volunteers and to evaluate the benefits and risks of this program for these patients. Materials and methods  A qualitative research method, based on semi-structured interviews with 15 patients recruited in the Chemotherapy Daycare Unit, was used. The interviews were transcribed and thematically analyzed. Results  Findings suggest that volunteers can effectively serve an enhanced supportive role in a hospital setting without adverse effects, and that their services are positively received by patients. The following themes were identified in relation to perceived benefits of the HBB volunteer support service: (1) a sense of humanization and normalization; (2) a sense of security; (3) support for non-medical needs; and (4) support for unaccompanied patients. While no negative experiences with the HBB volunteers were reported, the following themes were identified in relation to potential weaknesses of the HBB volunteer service: (1) a limited awareness by patients of the HBB volunteers’ roles and responsibilities; and (2) the lack of a structured role definition for the HBB volunteers at the pre-treatment phase. Conclusion  Our findings add to the literature on the contribution of volunteer support services and may serve decision-makers concerned with best practices in utilizing volunteer resources within a cancer hospital structure.     

Determining the effectiveness of mental health services from a consumer perspective: part 2: barriers to recovery and principles for evaluation

The routine use of standardized outcome measures has been introduced to assess the effectiveness of mental health service delivery throughout Australia. The use of these measures has been criticized for failing to reflect those aspects of treatment consumers consider to affect their recovery. This is the second of a two-part paper. Its aim is to explore the views of consumers regarding factors that impede recovery and to explore the principles that ideally should underpin the evaluation of mental health services. Focus group interviews were conducted with consumers of mental health services (n = 16) from one rural and one metropolitan mental health service in Victoria, Australia. This paper presents the findings, pertaining to aspects of mental health services that pose barriers to recovery. The main themes to emerge were: staffing issues; hearing the person not the illness; lack of safety and security; and, isolation. The main themes to emerge regarding the evaluation of mental health services were: consumer involvement; peer support and more responsive care and treatment. The views of participants suggest that the effective evaluation of mental health services requires an increased focus on the views and opinions of consumers in order to develop more responsive mental health services.     

South African mental health care service user views on priorities for supporting recovery: implications for policy and service development

Purpose: The paper documents the views of South African mental health care service users on policy directions and service developments that are required to support their recovery. Method: Semi-structured interviews were conducted with forty service users and service user advocates. A framework analysis approach was used to analyse the qualitative data. Results: Service user priorities included addressing stigma, discrimination and disempowerment, and the links between mental health and poverty. They suggested that these challenges be addressed through public awareness campaigns, legislative and policy reform for rights protection, development of a national lobby to advocate for changes, and user empowerment. Users suggested that empowerment can be facilitated through opportunities for improved social relatedness and equitable access to social and economic resources. Conclusions: This study suggests three strategies to bridge the gap between mental health care service users rights and needs on one hand, and unsupportive attitudes, policies and practices on the other. These are: giving priority to service user involvement in policy and service reform, creating empathic alliances to promote user priorities, and building enabling partnerships to effect these priorities.

Implications for Rehabilitation

• People living with psychosocial difficulties have a right to involvement in policy and service development, and their involvement has value for their recovery.

• The range of priorities people living with psychosocial difficulties identify as policy and service priorities to support their recovery requires policy makers and practitioners to work within a development, not an illness-focused approach.

• Policy implementers and practitioners need support to transform their ideological and practice framework from that of expert to that of enabler of service user involvement in treatment decisions, and public policy research and service development.

     

Experiences of service users involved in recruitment for nursing courses: A phenomenological research study

The aim of this study was to gain insight into service users' experiences of participating in recruitment for Adult, Mental Health and Child nursing studies at the authors' university; to establish potential motivations behind such participation; and to make suggestions for improved future practice. The involvement of service users in nurse education and recruitment has for some years been required by the Nursing and Midwifery Council, but there is a dearth of publications on the meaning of that involvement to participating service users. It is hoped that this study will contribute to this body of knowledge.A phenomenological approach was selected, field-specific focus groups of service users being facilitated using a semi-structured interview format; these were audio recorded and transcribed. The data was analysed using thematic analysis. Participation was subject to the service users having been involved in recruitment to nursing studies at the authors' university and the focus groups took place either at the university or at the child participants' school.Themes identified demonstrated largely positive experiences and a sense of meaningful involvement for all concerned. Findings indicated a close link between the values of the participants and those of the wider NHS, benefits to a sense of wellbeing and achievement, as well as the need for greater ownership of the recruitment process by service users. Potential lessons for academics wishing to promote greater service user involvement in student recruitment are articulated.     

Planting seeds of community-engaged pedagogy: Community health nursing practice in an intergenerational campus-community gardening program

As part of a participatory action research (PAR) study, nursing student participants collaborated with faculty, along with older adults, people with mixed abilities, and preschool aged children in order to ‘sow the seeds of social change’ and grow a campus community gardening project. The focus of this article is on the community-engaged pedagogy within a community health nursing practice course that supported student learning. Insights were gleaned over the course of four academic semesters (and four student cohort groups) with students as co-developers of the campus-community garden and participants in the PAR. Key themes emerged from student participants in the PAR process including: (1) planning in community to “think global, act local”; (2) discovering ‘the people in your neighbourhood’ as socially just partnerships; (3) revisiting landscapes of social inclusion; and (4) reflecting on “humble togetherness” across generational gaps. The findings showcased here attest to how community-engaged pedagogy, in conjunction with PAR, can facilitate student learning outside of traditional settings and grow social inclusion, intergenerational connection, and social justice.     

Following Through to the End: The Use of Inclusive Strategies to Analyse and Interpret Data in Participatory Action Research with Individuals with Intellectual Disabilities

Background Scholars have called for research approaches that actively include and are driven by people with intellectual disabilities, but the process of inclusive data analysis has been scarcely documented in the literature. This paper demonstrates the process university researchers and a group of self‐advocates used to analyse and interpret data collected during a participatory action research (PAR) project to increase the group’s capacity for self‐advocacy. Materials and Methods University researchers presented numerical data in three visual formats for analysis. Seventeen People First members analysed and interpreted the data using a modified focus group approach. Results All members participated in data analysis, but not all members participated in data interpretation. Members’ interpretations suggest that the group felt an increased sense of empowerment and heightened awareness as a result of their increased capacity to run a meeting and involvement in the PAR cycle of action and reflection. Conclusions Findings suggest that strategies such as visual representation of data, group analysis, and familiarity with data collection tools foster an inclusive process of analysis and interpretation.     

Assistants' in nursing perceptions of their social place within mental health‐care settings

An international nurse shortage, tightening fiscal constraints, and increased service demands have seen health systems increasingly turn to employing assistants in nursing (AIN) as a cost‐effective means to meet demand. This paper describes social positioning from the perspective of 11 AIN who were employed to work in specialist mental health settings in a metropolitan health service in Sydney. Data was collected by means of semistructured interviews. Interview questions encouraged AIN to explore their experience with reference to positioning within the service, role perception, role development, staff relationship, and role satisfaction. Thematic analysis was utilized to generate themes and explore meaning within the data. The following themes emerged: role definition and clarity; socialization and adaptation; and enhancing education. Analysis suggests that whilst AIN were integrated into mainstream service, the scope of activities or role remains geographically variable and inconsistent. Encouragingly, as AIN became familiar with their work environments and teams, they considered themselves to be of value and were able to play a meaningful role. A desire for learning and a need for continuing education also emerged as a primary theme. Findings from the data suggest that AIN in the mental health setting remain a novel and, to some extent, poorly utilized resource.     

Creating effective nursing partnerships: relating community development to participatory action research

The purpose of this article is to demonstrate the importance of creating effective partnerships between nurses practising community development (CD) and nurses engaged in participatory action research (PAR). To that end, an overview of the theoretical principles of CD and PAR is provided and the central tenets of each methodology explored. This is followed by a discussion of the similarities and differences inherent in CD and PAR which derive from the same theoretical and philosophical foundation; that of critical social theory. Examples of two research projects highlight the relationship between CD and PAR and demonstrate the value of creating effective practitioner/researcher partnerships. Finally, some of the lessons learned in creating these important partnerships will be presented. Although this call for practitioner/researcher alliance is not new, what is new is the central role the practising nurse could take in research. Creating partnerships between practising nurses and nurse researchers advances the opportunity to actualize responsive and effective PAR and to fulfill nursing's social contract.     

Sociological perspectives on self-help groups: reflections on conceptualization and social processes

AIM: The paper discusses two themes: first, professional involvement in self-help groups and secondly, sociological evidence on self-help groups in postmodern society. BACKGROUND: Self-help groups are a growing phenomenon across national borders and social/political systems. They affect the individual participants' activity level, strengthening of their self-perception and sense of belonging. METHODS: The methodological approach chosen is cross-sectional analysis of empirical findings, which is used for concept evaluation. Selected sociological theory is brought into the discussion of the role and significance of self-help groups. FINDINGS: New empirical sociological evidence shows that health care professionals - nurses, psychologists, social workers - have become an integrated part and thus essential actors in self-help groups within as well as outside the framework of the formal health care system. Involvement in self-help groups is a relatively new area of nursing practice and nursing research and serves an important function in that it sheds light on a rather unique form of social practice that is partly organized and managed by the participants themselves. By implementing modern sociological theory, which does in fact discuss social processes and relations as well as network formation, it is possible to investigate group processes unique to self-help groups and whether self-help groups potentially suppress or liberate at the individual as well as at the institutional level. CONCLUSIONS: The pronounced professional involvement leads us to question if it would not be time to re-conceptualize the self-help phenomenon, which on the one hand presupposes professional interaction and on the other hand introduces consultative services in connection with group processes. This indicates that it is necessary to introduce new aspects and themes for discussion in the health care debate and the work that goes beyond the predominantly individual orientated treatment and care function.     

A Qualitative Analysis of Adolescent,Caregiver, and Clinician Perceptions of the Impact of Migraines on Adolescents' Social Functioning

Migraines dramatically affect adolescents' quality of life. One area of particular importance is the impact of migraines on adolescents' social functioning. To understand the impact of migraines on adolescents' social functioning from multiple informants, we performed semistructured interviews with adolescents who have migraines, their caregivers, and clinicians who treat adolescents who have migraines. Three major themes related to social functioning were identified from the adolescent interviews: The need to be alone; lack of support from siblings; and the feeling of not being understood by others. The caregiver interviews yielded three main themes related to family functioning: that plans can change quickly; that family life revolves around helping the child with the migraine; and parents' feelings of inadequacy in helping their child. There were two main themes derived from the clinician interviews related to perception of family functioning: the importance of parental involvement; and the role of adolescents' school and social lives in migraine prevention. There are a number of unmet needs among adolescents with recurrent migraine and their families. Interviews with adolescents, caregivers, and clinicians suggest a number of areas for intervention.     

Clients' experiences with a specialized sexual assault service.

INTRODUCTION: Specialized services have been developed to meet the unique needs of survivors of sexual assault, and yet little research has been conducted to investigate clients' experiences with these services. An interpretive study was conducted to (1) understand the experience of women who were sexually assaulted and then cared for in an emergency setting by professionals associated with a specialized sexual assault service; (2) discover themes in the experiences of these women; and (3) discern implications of this experience for delivery of care to women who have been sexually assaulted. METHODS: Eight women who had been cared for at a specialized sexual assault service were interviewed 2 months later. RESULTS: Nine themes emerged from latent content analysis of the interviews. DISCUSSION: Conclusions drawn include the importance of holistic woman-centered care, the importance of having one caregiver focus on the client's emotional needs, the importance of touch, and the need for an effective, sensitive, and coordinated response by police and community services.     

Professional discourse and service cultures: an organisational typology developed from health and welfare services for people with learning disabilities

This study focuses upon the effect of social policy upon a particular area of service provision. It is influenced by the Foucauldian concept of governmentality and the proposition by Lewis et al. that social policy needs to be understood in local contexts. Only through understanding the partial and fragmented impact of policy can we gain a clear insight into the outcomes for users. The study is undertaken through an exploration of the micro politics of organisations providing health and welfare services for people with learning disabilities. It involves an approach to discourse analysis that focuses upon text developed from interviews with service providers, which is brought into contact with published literature in an iterative process. The interpretation of the text produces four themes: power, trust, citizenship and managerialism. The development of these themes and a further holistic interpretation of the text suggest an emerging organisational typology. A typology based upon different articulations of the themes noted that work to produce particular outcomes for service users.