Abstract
BackgroundSeriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers’ experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver) and the caregiver’s relationship to the patient (spouse/partner, etc.) are related to these experiences.MethodsIn a cross-sectional questionnaire study, randomly selected cancer patients with a range of diagnoses and disease stages were invited to pass on the ‘Cancer Caregiving Tasks, Consequences and Needs Questionnaire’ (CaTCoN) to 1–3 of their caregivers.ResultsA total of 590 caregivers related to 415 (55% of 752 eligible) cancer patients participated. Large proportions of caregivers experienced substantial caregiving workload, e.g., provision of psychological support (74%), as well as a range of negative consequences, most commonly stress (59%). Some caregivers experienced personal growth, but relatively large proportions did not. Caregiver status and the caregiver’s relationship to the patient were associated with some caregiving aspects. Primary caregivers experienced the highest caregiving workload, and non-primary caregivers experienced most problems with getting time off from work. Spouses/partners and/or parents experienced the highest workload, most lack of time for social relations, most financial difficulties, and had the greatest need for seeing a psychologist. They furthermore experienced the highest degree of personal growth and had the smallest need for living a normal life while being a caregiver. Yet, regarding the majority of caregiving aspects, no associations with caregiver status or the caregiver’s relationship to the patient were found.ConclusionsOverall, the findings confirm that cancer caregiving is burdensome. The primary and the closest caregivers seemed to take on most caregiving tasks, but, contrary to expectations, regarding the majority of caregiving consequences non-primary and more distant caregivers were affected to the same degree as the primary and closest caregivers. Initiatives and interventions to support not only the primary caregivers are therefore warranted.Electronic supplementary materialThe online version of this article (doi:10.1186/1471-2407-14-541) contains supplementary material, which is available to authorized users.
Highlights
Ill patients often depend on their informal caregivers to help and support them through the disease course
Independent variables This study focused on two independent variables: 1) ‘caregiver status’, classified as primary or non-primary caregiver to the patient based on the mark on the questionnaire and 2) ‘the caregiver’s relationship to the patient’, classified as spouse/partner, child, parent, sibling, or other based on information in the questionnaire
104 of these patients were excluded from the study as they did not meet the inclusion criteria
Summary
Ill patients often depend on their informal caregivers to help and support them through the disease course. The caregivers frequently take over or assist with everyday tasks [8], such as cooking [9], housekeeping [4,5,7], and child care [9], if the patient has become unable to carry out these [1]. These tasks can be emotionally, physically, socially, and financially demanding [10], and 10–50% of the caregivers experience considerable strain [11,12]. Positive consequences of caregiving, such as improved sense of self-worth [5,13,17], post-traumatic growth [17], relationship enhancement [20,21], and altered perspective on living [20], have been described
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