Liz Forbat

Relationship-based social policy: personal and policy constructions of `care'

This article stems from a constructionist understanding of community care, drawing on the work of Bytheway and Johnson on the social construction of community care and Heatons Foucauldian analysis of the visibility of the informal carer. The article develops an understanding of how care is represented in contemporary social policy and what appears to be missing from such constructions. This builds on the work of Lloyd who identifies a lack of consideration of the multidimensional aspects of care in policy. The Department of Healths National Strategy for Carers is problematized, and issues of what is and is not visible in this policy are discussed in the light of research into care relationships by the authors. We argue that, while emotional labour and the relational component of informal care are highly salient in the constructed accounts of both carers and cared-for people, they are invisible in the National Strategy.

Stuck in the Middle with You: The Ethics and Process of Qualitative Research With Two People in an Intimate Relationship

In this article, the authors discuss their experiences of two separate research projects involving interviews with both partners in care relationships that pushed the ethics of research methods along unfamiliar routes. The desire to understand the relationship from both sides was seen to outweigh the perils of accessing both stories but only when the ethical and procedural elements had been sufficiently worked through. It is those ethical and procedural elements that they share in this article, which is offered as a provocative nudge toward a continued critical appraisal of ethical standards within qualitative research and begins with the authors’reflection on their processes for such research through the examination of a fictionalized vignette.

Theoretical and Practical Reflections on Sharing Transcripts With Participants

This article is a critical reflection on the process of creating transcripts and sharing them with interviewees. It relates to two elements of the research process: first, sharing transcripts with research participants and, second, participants’ seeing extracts from transcripts in academic writing. The authors explore participants’ experiences of revisiting the interview in written form by reflecting on the interconnections between social research methods and epistemology. They also consider the ethical implications of this process. They consider the relationship between the transcript and the representation (re-presentation) of what participants believe to have occurred within the interview. This leads to a discussion of the importance of developing reflexivity with respect to the practice and processes of sharing transcripts.

Men with prostate cancer over the first year of illness: their experiences as biographical disruption

GoalsThis paper is one of five interrelated papers about cancer, drawn from a larger study exploring the experiences of 66 people diagnosed with cancer. Findings are reported separately because the way in which people experience cancer can vary by cancer type. Here, we determine the utility of liminality and biographical disruption as explanatory theories in relation to mens experiences of prostate cancer. We situate and explore notions of liminality and disruption in relation to self, identity and context to inform debate about the provision of supportive care and highlight the contribution this study makes to the understandings of mens health.Materials and methodsThis is a qualitative interview study of 66 people diagnosed with cancer. The study included five cancer types: gynaecological, prostate, lung, breast and colorectal. This paper illustrates the experiences of ten men diagnosed with prostate cancer. Three serial interviews were conducted at (1) diagnosis, (2) treatment and (3) follow-up. Drawing on the constant comparative method (Glaser and Strauss 1967), a descriptive and thematic approach to data analysis was adopted. This descriptive analysis evidenced that cancer caused disruption to peoples lives. In order to move beyond this level of description, begin to explain this and develop theoretical insight, we drew on concepts of biographical disruption (Bury, Sociol Health Illn 4(2):167–182, 1982; Bury, Sociol Health Illn 13(4):451–468, 1991; Bury, Sociol Health Illn 23(3):263–285, 2001) and liminality (Navon and Morag, Soc Sci Med 58(11):2337–2347, 2004).Main resultsNotions of biography and identity weave their way through mens accounts of prostate cancer. Physical side effects and reconstructed futures each form key parts of mens narratives.ConclusionsOur findings add to existing knowledge of supportive care needs for men living with prostate cancer. We suggest that studies exploring supportive care need to remain mindful of the disruption that cancer causes both during and after treatment, the complexity of such experience and respective demands on supportive care.

Discussing the sexual consequences of treatment in radiotherapy and urology consultations with couples affected by prostate cancer

Study Type – Attitude/patient experience analysis (retrospective cohort)

Treatment decision-making in cancer care: the role of the carer.

AIMS AND OBJECTIVES This study explores the role of the carer in treatment decision-making in cancer care. BACKGROUND Literature about involvement in treatment decision-making tends to focus on patients and clinicians, with the carer rarely included. The absence of carers is problematic because the management of illness is often carried out in the context of complex networks of relationships. Although current policy encourages health care practitioners to work in partnership with family members, implementation is troubled by a lack of understanding of the significance of interpersonal relationships and interactions and the role of the relationship throughout the course of the illness experience. Despite awareness, there is little systematic, coherent analysis of the complexity of these interactional dynamics and, in particular, consideration of the implications for involvement and treatment decision-making. DESIGN Qualitative, longitudinal. METHODS Three serial semi-structured interviews with 66 patients and 43 carers within the first year following a diagnosis of cancer. A descriptive and thematic approach to data analysis was adopted. RESULTS Carers are involved in treatment decision-making in cancer care and contribute to the involvement of patients through their actions during, before and after consultations with clinicians. Carers can act as conduits for information from patient to clinician and from clinician to patient. They can also act as facilitators during deliberations, helping patients to consider whether to have treatment or not and which treatment. CONCLUSIONS Our study has highlighted the deficiency of models that fail to acknowledge the role of the carer in the treatment decision-making process. We propose the adoption of a relational approach by the inclusion of the carer in conceptual frameworks and recommend triadic (patient, carer and professional) models of involvement. RELEVANCE TO CLINICAL PRACTICE Cancer care clinicians should recognise and actively involve the carer as well as the patient in treatment decision-making.

Patient and public involvement: models and muddles

AIMS AND OBJECTIVES This paper explores the range of models of involvement which are drawn upon in an empirical study and which are invoked in the literature and policy. The results and discussion of the study help to excavate and explore the muddle of conceptualisations of involvement and how this leads to difficulties for practitioners, patients and managers in implementing the relevant policy. BACKGROUND Patient and public involvement has developed an important profile internationally within health and social care policy. However, its importance as a rhetorical device has not been accompanied by adequate developments in how it is operationalised. DESIGN Cross-sectional study, with an intervention conducted at three sites, and non-intervention measures taken at two control sites. METHODS This paper draws on an empirical study of involvement. Focus groups were conducted with a lung cancer team and people affected by cancer at five health boards across Scotland. Chief executives of each of these five health boards also took part in individual interviews. Participants were asked to describe their ideas of what involvement is and their application of it. RESULTS A range of ways of conceptualising involvement were apparent. Few of these moved beyond the use of patient satisfaction questionnaires. At times, troubling understandings were articulated, for example, using public meetings to communicate decisions about service closures to the public. CONCLUSION The slow escalation of involvement is in part because of the myriad ways in which it is conceptualised and discussed. Thus, we conclude that one of the greatest barriers to truly integrating patient involvement into health services, policy and research is the conceptual muddle with which involvement is articulated, understood and actioned. RELEVANCE TO CLINICAL PRACTICE. Clinicians need to be supported to seek clarity in the use and operationalisation of involvement if the agenda is to be truly adopted and strengthened.

Relationship Difficulties in Dementia Care A discursive analysis of two women’s accounts

This article reports on a small-scale study where people giving and receiving care were invited to talk about their relationship. It draws on one care dyad of a woman (who has a diagnosis of dementia) and her daughter (who has provided care for her mother). A short series of interviews was conducted with both women, focusing on their biographies and current relationship. This article reports the account given by the mother and how this intersects with the account given by the daughter. The discursive analysis presented centralizes a concern with attending to the accounts of people with dementia. Analysis of the talk of people with dementia can make a valuable contribution to understanding care relationships. Such analysis has the potential for shedding light on difficulties in care relationships. The article ends by outlining some salient issues for professionals and family members involved in dementia care.

Cancer awareness among adolescents in Britain: a cross-sectional study

BackgroundLittle is known about adolescents’ cancer awareness and help-seeking behaviour in Britain. This study assessed adolescents’: awareness of cancer symptoms, common cancers, and the relationship between cancer and age; anticipated delay and perceived barriers to seeking medical advice; and examined variation by age, gender, ethnicity and whether individuals knew someone with cancer.MethodsA survey was conducted using a modified paper version of the Cancer Awareness Measure (CAM). The sample included 478 adolescents (male: n = 250, 52.3%) aged 11–17 years old (mean = 13.8, SD = 1.24) recruited from four British schools between August and October 2011.ResultsAdolescents’ cancer awareness was low. Half of all adolescents did not know the most common childhood (51%) or teenage (49%) cancers and most (69%) believed cancer was unrelated to age. Awareness of cancer symptoms was significantly higher among older adolescents (aged 13–17 years) (p = 0.003) and those who knew someone with cancer (p < 0.001). Three-quarters (74%) of adolescents indicated they would seek help for a symptom they thought might be cancer within 3 days, and half (48%) within 24 hours. The most endorsed barriers to help-seeking were ‘worry about what the doctor might find’ (72%), being ‘too embarrassed’ (56%), ‘too scared’ (54%) and ‘not feeling confident to talk about symptoms’ (53%). Endorsement of these emotional barriers was significantly higher among females (p ≤ 0.001).ConclusionThere are certain groups of adolescents with poor cancer awareness. Cancer messages need to be targeted and tailored to particular groups to prevent the emergence of health inequalities in adulthood. Interventions to raise adolescents’ cancer awareness have the potential for a life-long impact on encouraging early diagnosis and survival.

Prioritisation of future research topics for children’s hospice care by its key stakeholders: a Delphi study.

The Delphi process, widely used in health research to seek consensus on key issues amongst large stakeholder groups, was adopted to allow families, hospice staff/volunteers and linked professionals to identify and prioritise future research priorities for children’s hospice care. In the qualitative Round 1, interviews with families (n = 5), linked professionals (n = 18) and focus groups with hospice staff and volunteers (n = 44) led to the generation of 56 research topics categorised within 14 broad themes. To give a larger number of stakeholders (n = 621) (including families n = 293; hospice staff/volunteers n = 216 and professionals n = 112) the opportunity to rate the importance of each research topic and seek group consensus on the future research priorities for children’s hospice care, subsequent Rounds 2 and 3 involved the use of postal questionnaires. Response rates to questionnaires were 44% in Round 2 (274/621) and 83% in Round 3 (204/247). Participants prioritised research topics relating to 1) hospice and respite care needs of young people (aged 16 +), 2) pain and symptom management and 3) bereavement and end-of-life care. There was wide acknowledgement by those took part in the process of the difficulty in rating the topics, and emphasis on the fact that all of the topics raised during the project are of high importance and merit further research. The current salient issues perceived by key stakeholders as being the research priorities for children’s hospice care were identified. Addressing these priority topics for research would further contribute to the development of a much needed evidence base in children’s hospice and palliative care research and optimise the delivery of children’s hospice services that are underpinned by valid and robust research.