Diane Roberts

Protocol for a longitudinal qualitative interview study: maintaining psychological well-being in advanced cancer—what can we learn from patients’ and carers’ own coping strategies?

Introduction People with advanced cancer and their carers experience stress and uncertainty which affects the quality of life and physical and mental health. This study aims to understand how patients and carers recover or maintain psychological well-being by exploring the strategies employed to self-manage stress and uncertainty. Methods and analysis A longitudinal qualitative interview approach with 30 patients with advanced cancer and 30 associated family or informal carers allows the exploration of contexts, mechanisms and outcomes at an individual level. Two interviews, 4–12 weeks apart, will not only enable the exploration of individuals’ evolving coping strategies in response to changing contexts but also how patients’ and carers’ strategies inter-relate. Patient and Carer focus groups will then consider how the findings may be used in developing an intervention. Recruiting through two major tertiary cancer centres in the North West and using deliberately broad and inclusive criteria will enable the sample to capture demographic and experiential breadth. Ethics and dissemination The research team will draw on their considerable experience to ensure that the study is sensitive to a patient and carer group, which may be considered vulnerable but still values being able to contribute its views. Public and patient involvement (PPI) is integral to the design and is evidenced by: a research advisory group incorporating patient and carers, prestudy consultations with the PPI group at one of the study sites and a user as the named applicant. The study team will use multiple methods to disseminate the findings to clinical, policy and academic audiences. A key element will be engaging health professionals in patient and carer ideas for promoting self-management of psychological well-being. The study has ethical approval from the North West Research Ethics Committee and the appropriate NHS governance clearance. Registration National Institute for Health Research (NIHR) Clinical Studies Portfolio, UK Clinical Research Network (UKCRN) Study number 11725.

Coping well with advanced cancer : a serial qualitative interview study with patients and family carers

Objectives To understand successful strategies used by people to cope well when living with advanced cancer; to explore how professionals can support effective coping strategies; to understand how to support development of effective coping strategies for patients and family carers. Design Qualitative serial (4–12 week intervals) interview study with people with advanced cancer and their informal carers followed by focus groups. The iterative design had a novel focus on positive coping strategies. Interview analysis focused on patients and carers as individuals and pairs, exploring multiple dimensions of their coping experiences. Focus group analysis explored strategies for intervention development. Participants 26 people with advanced (stage 3–4) breast, prostate, lung or colorectal cancer, or in receipt of palliative care, and 24 paired nominated informal/family carers. Setting Participants recruited through outpatient clinics at two tertiary cancer centres in Merseyside and Manchester, UK, between June 2012 and July 2013. Results 45 patient and 41 carer interviews were conducted plus 4 focus groups (16 participants). People with advanced cancer and their informal/family carers develop coping strategies which enable effective management of psychological wellbeing. People draw from pre-diagnosis coping strategies, but these develop through responding to the experience of living with advanced cancer. Strategies include being realistic, indulgence, support, and learning from others, which enabled participants to regain a sense of wellbeing after emotional challenge. Learning from peers emerged as particularly important in promoting psychological wellbeing through the development of effective ‘everyday’, non-clinical coping strategies. Conclusions Our findings challenge current models of providing psychological support for those with advanced cancer which focus on professional intervention. It is important to recognise, enable and support peoples’ own resources and coping strategies. Peer support may have potential, and could be a patient-centred, cost effective way of managing the needs of a growing population of those living with advanced cancer.

A revised model for coping with advanced cancer. Mapping concepts from a longitudinal qualitative study of patients and carers coping with advanced cancer onto Folkman and Greer's theoretical model of appraisal and coping

To explore whether the Folkman and Greer theoretical model of appraisal and coping reflects the processes used by people living with advanced cancer.

Health Maintenance, Meaning, and Disrupted Illness Trajectories in People with Low Back Pain: A Qualitative Study

Whilst ‘biographical disruption’ remains important for explaining how people rebuild biography following the onset of chronic illness, it does not self-evidently explain the problem of managing a fluctuating chronic condition such as non-specific low back pain. Chronic illness rarely leads to long-term improvement; the trajectory is not always linear, and sudden or gradual improvements alongside deterioration are commonly experienced. In the case of low back pain, self-management often involves utilisation of non-pharmaceutical approaches, personal resources for accommodating pain and disability, as well as managing symptoms with clinical treatments to relieve pain. Such a multifaceted approach – not only concerned with the reduction of symptoms – shifts focus beyond the ‘disease’ state and a single point of disruption, drawing attention to the use of ‘health maintenance actions’ to facilitate a proactive response to illness management. We propose this new approach as an alternative way of understanding the experience of patients with fluctuating health conditions such as low back pain.

Social Representations of Diagnosis in the Consultation

Observations of physiotherapy consultations and qualitative interviews with patients were conducted to explore the clinical explanation for sciatic pain. We report three themes which illustrate the contested and negotiated order of the clinical explanation: anchoring; resistance; and normalisation. We show using the theory of social representations how the social order in the physiotherapy consultation is maintained, contested and rearticulated. We highlight the importance of agency in patients’ ability to resist the clinical explanation and in turn shape the clinical discourse within the consultation. Social representations offer insights into how the world is viewed by different individuals, in our case physiotherapists and patients with sciatic pain symptoms. The negotiation about the diagnosis reveals the malleable and socially constructed nature of pain and the meaning-making process underpinning it. The study has implications for understanding inequalities in the consultation and the key ingredients of consensus.