Debbie Cavers, Sarah Cunningham-Burley, Eila Watson, Elspeth Banks, Christine Campbell
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引用次数: 0
Abstract
Introduction
There is a pressing need to understand and explore the complex experiences and psychosocial support needs of people LWBC-CM and their informal caregivers, to inform survivorship and supportive care interventions.
Methods
In-depth qualitative interviews were conducted with people LWBC-CM and their informal caregivers in Scotland, invited via primary care. One-to-one, face-to-face interviews were conducted with informed consent exploring experiences of symptoms, psychosocial support needs and interactions with health services. Interviews were transcribed and analysed using a thematic approach.
Results
Forty-one people LWBC-CM and twenty-three informal caregivers were interviewed. Four themes were identified: the Physical and Psychological Impact of Cancer and Comorbidity, Dominant Storie—Prioritising Conditions and Making Sense of Illness, Navigating Health Services and Treatments and Caring for People with Complex Health Conditions. Type and severity of conditions mediated people's experiences and daily living. Complex fatigue—fatigue arising from a number of health conditions—dominated symptomology. Participants navigated multiple appointments and complex medication regimes. Patients identified the need for acknowledgement of other chronic conditions and for streamlined care provision. Mutual caring and social isolation were also identified as part of the caring relationship.
Conclusions
There is a mandate to address the psychosocial support needs of people LWBC-CM, and their informal carers, given the burden of treatment for cancer survivors with moderate to severe complex conditions as they navigate health services.
Patient or Public Contribution
A patient representative has been involved in all stages of the study from development of the application through study design, commenting on documentation, analysis of transcripts and writing the manuscript. They are included as an author on the manuscript.
期刊介绍:
Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including:
• Person-centred care and quality improvement
• Patients'' participation in decisions about disease prevention and management
• Public perceptions of health services
• Citizen involvement in health care policy making and priority-setting
• Methods for monitoring and evaluating participation
• Empowerment and consumerism
• Patients'' role in safety and quality
• Patient and public role in health services research
• Co-production (researchers working with patients and the public) of research, health care and policy
Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.