Abstract
A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Care Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregiver workload using a questionnaire on support with activities of daily living (ADL). In comparison to caregivers of patients with all other cancers, the primary brain cancer group had significantly higher levels of caregiver strain, lower levels of mental wellbeing and a higher level of ADL workload. Their physical wellness also deteriorated significantly over time. An action plan approach led to practical solutions for addressing highlighted concerns. Four themes evolved from the family caregivers’ feedback interviews: The extremely challenging caregiver experience with brain cancer; the systematic and practical approach of the CSNAT during rapid changes; connection with health professionals, feeling acknowledged and empowered; and timely advice and assurance of support during the caregiving journey. This preliminary study has demonstrated that the CSNAT provides a practical and useful tool for assessing the support needs of family caregivers of patients with brain cancer and has provided the basis for a larger scale, longitudinal study that allows a more detailed characterisation of the evolving caregiver needs at different stages of the disease.
Highlights
The impact on family caregivers when providing home based family caregiving for the terminally ill is well documented to have substantial physical, social and psychological consequences [1,2,3,4], with extensive literature reporting these negative effects for caregivers of people with life limiting illnesses including brain tumours [5,6,7,8]
This study focuses on a subset of the larger trial, family caregivers of people with primary brain cancer, and makes comparisons with two other groups, brain metastases and all other cancers
Findings presented relate to: a description of the profile of all study participants in three groups; a comparison of outcome variables between brain cancer and all other cancers for the intervention group; the identified support needs of family caregivers and actions taken by the service to provide support; and the family caregivers’ experiences in using the Carer Support Needs Assessment Tool (CSNAT), summarized in four themes
Summary
The impact on family caregivers when providing home based family caregiving for the terminally ill is well documented to have substantial physical, social and psychological consequences [1,2,3,4], with extensive literature reporting these negative effects for caregivers of people with life limiting illnesses including brain tumours [5,6,7,8]. Due to the sudden ‘crisis’ onset, an often rapid progression of the disease and the uncertainty of recovery [5,7,8,13,15], family caregivers of people with brain cancer often describe their caring experiences as physically and mentally challenging [8,15,18,19,20]. In particular those with glioblastomas, can rapidly progress to distinctive neuro-oncological symptoms and physical deterioration [5,8,15,21] including personality changes requiring need for support, a high level of assistance with personal daily living tasks, problem solving and decision making or advocacy [8,15,20,22]
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