Abstract
BackgroundThe aim of the current study is to determine the effects of caregiving on bereavement outcome. The study will address two important gaps in the research literature: (1) the relationship between pre-death distress and post-death outcomes and (2) family caregivers’ anticipation and preparation of the death of the person for whom they care.Methods/DesignWe will conduct a longitudinal, prospective study of adult family caregivers of adult patients receiving palliative care. All participants will complete a questionnaire administered at four points – approximately 4–8 weeks prior to bereavement, and 3–4, 6–7, and 9–10 months post-bereavement. The questionnaire includes measures of multidimensional caregiving experiences (strain, distress, positive appraisals, and family wellbeing), caregiver prolonged grief, multidimensional grief responses (despair, panic behaviour, blame and anger, detachment, disorganisation, and personal growth), prolonged grief, quality of life, general health (psychological and physical) and demographics. These caregivers’ data will be compared to a comparison group matched for age, sex, and postcode, allowing the caregivers’ general health and quality of life to be compared to a normative group. The caregivers will also be invited to participate in a semi-structured interview about preparing for impending bereavement.DiscussionThis is the first study to address the methodological limitations in the current literature and will likely make a significant contribution to both our understanding of caregiving on bereavement outcome and to bereavement care offered in palliative and hospice settings.
Highlights
The aim of the current study is to determine the effects of caregiving on bereavement outcome
While much is known about the experiences and needs of family caregivers prior to the death [4,5], less is known about the effect of caregiving on bereavement outcome [6,7], and the literature that is available is compromised by three methodological limitations
Study design The mixed-methods study has two components: First, a longitudinal study using quantitative measures of primary caregivers’ and matched comparisons’ general health, emotional distress, and quality of life pre-and post-bereavement, in order to determine the changes over time, and how the recently bereaved caregivers’ distress compares with the matched comparisons
Summary
The aim of the current study is to determine the effects of caregiving on bereavement outcome. The study will address two important gaps in the research literature: (1) the relationship between pre-death distress and post-death outcomes and (2) family caregivers’ anticipation and preparation of the death of the person for whom they care. Longitudinal study of 217 informal caregivers of people recently placed in nursing homes used four data collection points over 18 months and demonstrated that preparing for death eases post-bereavement adjustment for caregivers [14]. These studies do not typically include adequate comparison groups [14,15,16].
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