Author
- Jacinda Fisher1
- Flinders University1
2008
Excerpt
The caregiving role adopted by family members and friends during the palliative phase of patient illness is a uniquely demanding and increasingly common experience in societies around the world. The potential impacts of this role are multiple and include compromised caregiver health and well-being and poor quality patient care as well as longer term impacts on caregiver bereavement and even mortality rates.
A number of problems have plagued investigations into the experience of caregiving. In palliative care, many studies have been qualitative and retrospective. In the broader study of caregiving, prospective cross-sectional research designs have dominated, often investigating a random selection of potential risk factors. Such studies have only been able to identify associations rather than predictive relationships between potential risk factors and subsequent caregiver coping and well-being outcomes In many instances, "generic" measures developed for more heterogenous caregiving groups have been applied and little attention given to their validity within different contexts. The role of protective factors and positive outcomes has largely been neglected in favour of a focus on negative ones. Lastly, while some research cites the relevance of theoretical models in identifying which variables best explain individual differences in caregiver coping and well-being, relatively few systematically test them.
Improved understanding of not only the type and extent of caregiving demands and impacts, but also how these change as patient death approaches is needed. With this aim, this thesis draws upon an intensive, longitudinal data set to track the experience of caregiving during the palliative phase of patient illness. Caregivers (N=122) of patients referred to one of three metropolitan palliative care services in South Australia were interviewed up to three times over the course of approximately two months.
Three main contributions to the fields of palliative caregiving and stress and coping research were made. First, a "toolkit" comprised of a set of short, reliable and valid measures applicable to the context of palliative caregiving were identified through a thorough psychometric analysis of existing and specifically developed measures. Factor analysis of outcome measures identified four distinct dimensions and the question of which should be targeted in palliative care interventions was raised.
Second, caregivers' role demands, appraisal, coping, burden and other outcomes were described cross-sectionally and longitudinally relative to time till patient death. Status and change at the group level was contrasted to marked variation at the individual level. Care demands, appraisal, coping and outcomes did not change systematically as a function of time till patient death although some trends were evident within six weeks of the patient's death. Further, no association was found between how well caregivers coped and the frequency of services used. These results indicated that the caregiving journey is a highly individual one and that the caregivers experience was apparently dependent upon factors other than the extent of patient impairment and service use. Qualitative analyses of caregiver's thoughts and feelings provided unique insights into their personal experiences.
Third and finally, a modified version of Lazarus and Folkman's (1984) Cognitive Appraisal Model of Stress and Coping was tested to identify which of a number of personal resources, environmental stressors, appraisal and coping variables explained individual differences in caregiver outcomes. Regression analyses did not support the proposed model structure or the fully mediating roles of appraisal and coping. However, the findings did show that the caregivers' appraisal of their tasks, role, resources and coping level were important in explaining and, to some extent, predicting subsequent outcomes. These brief measures were therefore recommended for inclusion in clinical assessment to screen caregivers at risk. Regular monitoring and the tailoring of interventions to individual needs were also recommended.
A number of problems have plagued investigations into the experience of caregiving. In palliative care, many studies have been qualitative and retrospective. In the broader study of caregiving, prospective cross-sectional research designs have dominated, often investigating a random selection of potential risk factors. Such studies have only been able to identify associations rather than predictive relationships between potential risk factors and subsequent caregiver coping and well-being outcomes In many instances, "generic" measures developed for more heterogenous caregiving groups have been applied and little attention given to their validity within different contexts. The role of protective factors and positive outcomes has largely been neglected in favour of a focus on negative ones. Lastly, while some research cites the relevance of theoretical models in identifying which variables best explain individual differences in caregiver coping and well-being, relatively few systematically test them.
Improved understanding of not only the type and extent of caregiving demands and impacts, but also how these change as patient death approaches is needed. With this aim, this thesis draws upon an intensive, longitudinal data set to track the experience of caregiving during the palliative phase of patient illness. Caregivers (N=122) of patients referred to one of three metropolitan palliative care services in South Australia were interviewed up to three times over the course of approximately two months.
Three main contributions to the fields of palliative caregiving and stress and coping research were made. First, a "toolkit" comprised of a set of short, reliable and valid measures applicable to the context of palliative caregiving were identified through a thorough psychometric analysis of existing and specifically developed measures. Factor analysis of outcome measures identified four distinct dimensions and the question of which should be targeted in palliative care interventions was raised.
Second, caregivers' role demands, appraisal, coping, burden and other outcomes were described cross-sectionally and longitudinally relative to time till patient death. Status and change at the group level was contrasted to marked variation at the individual level. Care demands, appraisal, coping and outcomes did not change systematically as a function of time till patient death although some trends were evident within six weeks of the patient's death. Further, no association was found between how well caregivers coped and the frequency of services used. These results indicated that the caregiving journey is a highly individual one and that the caregivers experience was apparently dependent upon factors other than the extent of patient impairment and service use. Qualitative analyses of caregiver's thoughts and feelings provided unique insights into their personal experiences.
Third and finally, a modified version of Lazarus and Folkman's (1984) Cognitive Appraisal Model of Stress and Coping was tested to identify which of a number of personal resources, environmental stressors, appraisal and coping variables explained individual differences in caregiver outcomes. Regression analyses did not support the proposed model structure or the fully mediating roles of appraisal and coping. However, the findings did show that the caregivers' appraisal of their tasks, role, resources and coping level were important in explaining and, to some extent, predicting subsequent outcomes. These brief measures were therefore recommended for inclusion in clinical assessment to screen caregivers at risk. Regular monitoring and the tailoring of interventions to individual needs were also recommended.