Exploring psychosocial vulnerability in informal carers of patients with chronic haematological malignancies

Introduction There are more than 1,900 cases of blood cancers diagnosed each year in Ireland, with this trend set to continue due to the ageing population. Blood cancers make up approximately 10% of all cancers and are the fourth most common cause of cancer-related deaths in Ireland. Tremendous progress has been made in the treatment of patients with a diagnosed haematological malignancy in the last number of years. Haematological malignancies that were once considered incurable are now being managed as chronic, incurable diseases due to the substantial changes in disease management strategies and available treatments. Little is known about carers’ experience in this cohort of cancer patients. This is most likely due to the substantial change in the disease trajectory and with patients living longer with a treatable disease that was once considered incurable. Informal carers play a major role in supporting patients through the uncertainty of an incurable disease often which is overlooked. The deterioration in caregiver wellbeing as a result of caregiving is now being recognised globally and recognising what contributes to vulnerability in the context of the psychosocial impact may offer insight into recognising carers at risk. The thesis aims to explore and describe psychosocial vulnerability in carers of patients with Chronic Haematological Malignancies (CHM). Methods A hybrid concept analysis (HCA) was undertaken to define the concept “psychosocial vulnerability” in carers of patients with a CHM. This involved three phases: • Part 1, theoretical phase: A scoping review and qualitative evidence synthesis (QES), • Part 2 fieldwork phase: one-to-one interviews with carers of individuals with a CHM (qualitative research) and • Part 3: an analytical phase involving parts 1 and 2. • Finally, a quantitative study was undertaken to operationalise the definition of the concept “psychosocial vulnerability” in caregivers of individuals with a CHM. Results The scoping review highlighted the immaturity of the concept of “psychosocial vulnerability.” No definition of psychosocial vulnerability was found in the literature. The qualitative evidence synthesis had three main themes: Unpredictable Disease Trajectory, Illness Manager and Loss, Loneliness and Isolation. The main findings are: The patient’s quality of life is a priority for carers in an uncertain disease trajectory. There is a reluctance to discuss end of life because the disease trajectory is uncertain. Carers become experts at managing and overseeing care, are multi-taskers, taking on protector, advocate roles, and desperately seek information on the diagnosis and treatment. Carers worry about financial loss, and experience change in their relationships with their loved ones, as well as experiencing loneliness and isolation. The qualitative interviews had two main themes: restructured living, and sustaining caring with six subthemes: shrinking world, constant carer, healthcare professional support, needing information – particularly in the early days, peer support and taking control. The main findings are: There is a significant life change for caregivers, which is often isolating and invisible. Healthcare professional and peer support are crucial to sustaining caring. The analytical process of the hybrid concept analysis defined psychosocial vulnerability as ‘the risk and susceptibility of psychological or social harm as a result of exposure to the experience of caring for an individual with an incurable blood cancer. It can be due to a range of factors, including socioeconomic status, social support, access to healthcare, life events and individual characteristics such as personality traits and coping styles”. It identified the UCLA Loneliness scale (UCLA scale), Brief Resilience Scale (BRS scale), Perceived Stress Scale (PSS scale) and Modified Caregiver Strain Index Scale (MCSI) as useful for operationalising the concept. The cross-sectional descriptive questionnaire was conducted to operationalise the concept of psychosocial vulnerability. It identified that younger carers experienced a greater impact on their lives. Demographic characteristics associated with psychosocial vulnerability were age, gender, socioeconomic status, health, and well-being. Conclusion The HCA is a helpful technique for defining and exploring immature concepts. The findings contribute to the field of concept analysis studies and the field of chronic haematological malignancies and carers’ needs. There is valuable input in that findings can inform policy and highlight the impact that caring for an individual with a chronic haematological malignancy has on carers. Further work can be developed in other areas of chronic disease with the concept of psychosocial vulnerability. A key finding is the need for more resources, particularly social support for carers. Furthermore, carers need to be involved in the patient trajectory and recognised for their immense value to the patient experience and care.

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University of Galway

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Attribution-NonCommercial-NoDerivatives 4.0 International

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University of Galway Theses (PhD Theses)