Lynda Appleton

Patients' experiences of living beyond colorectal cancer: A qualitative study

PURPOSE OF THE RESEARCH This paper is a report of a study of the experiences of individuals with colorectal cancer in the period following their cancer treatment and the physical, psychological and social aspects associated with adjusting to everyday life. METHODS AND SAMPLE Qualitative interviews using a phenomenological approach were conducted with a purposive sample of 13 individuals who had completed active curative treatment for colorectal cancer. RESULTS Study findings suggest that colorectal cancer survivors employ a broad range of techniques and approaches to manage adjustment to everyday life such as goal-setting, managing informal networks and adopting strategies for physical and emotional recovery. Personal interests were used to create a sense of meaning and through the cultivation of altruistic and utilitarian outlooks on life, positive emotional gains were obtained. CONCLUSIONS Colorectal cancer survivors employ personal strategies for managing life in the survivorship period following cancer treatment. The study findings demonstrate additional areas for exploration such as the effect of altruism on adjustment and the relationship to other groups of cancer survivors.

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.

The impact of prostate cancer on men's everyday life

Prostate cancer impacts on the daily lives of men, particularly their physical and emotional health, relationships and social life. This paper highlights how men cope with disease and treatment and the strategies they employ to manage their diagnosis alongside daily life. Twenty-seven men were interviewed at different stages in their disease pathway: nine men prior to radiotherapy, eight men at 6-8 months post radiotherapy and 10 men at 12-18 months post radiotherapy. A grounded theory approach was used to collect and analyse the data. Regardless of the point at which they were interviewed four areas emerged as important to the men: the pathway to diagnosis; the diagnosis; the impact of prostate cancer and its treatment on daily life; and living with prostate cancer. Prostate cancer was diagnosed using the prostate-specific antigen (PSA) test, rectal examination and biopsy. Many men did not understand the consequences of a high PSA reading before they undertook the test. Painful investigative biopsies were viewed as the worst part of the disease experience. Radiotherapy was considered less invasive than other treatments, although preparatory regimes were associated with stress and inconvenience. Men used various strategies to deal with treatment-induced threats to their masculinity in the long term.

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.

The construction of help during radiotherapy: Redefining informal care

This study will explore how help is constructed during and following radiotherapy for patients with cancer.