Family/friend caregivers of persons with dementia often do not feel prepared for end-of-life, which contributes to high rates of complicated grief, depression and anxiety in bereavement. This mixed methods study used an exploratory sequential design to explore the core concepts and indicators of preparedness, develop and evaluate a multidimensional questionnaire aimed at measuring caregiver preparedness for end-of-life for persons with dementia. In Phase 1, a qualitative study with an interpretive descriptive design was used to explore the core concepts and indicators of preparedness with 16 bereaved family caregivers recruited from six long-term care homes located in Ontario, Canada. In Phase 2, a quantitative, cross-sectional Delphi-survey was conducted with 5 caregivers and 12 diverse professional experts to select preparedness indicators/items and develop the Caring Ahead questionnaire. Lastly in Phase 3, the self-report, paper format questionnaire was evaluated for evidence of validity and reliability using a quantitative cross-sectional design. In this final phase, the questionnaire was completed through the postal mail by 134 caregivers from over 50 long-term care homes/residential care facilities, primarily in Ontario, Canada. Evidence for internal structure and concurrent validity was generated along with reliability coefficients suggesting internal consistency and stability in a test-retest. Findings from this study contributed to the conceptualization and operationalization of preparedness and produced the new, multidimensional questionnaire titled Caring Ahead: Preparing for End-of-Life with Dementia with preliminary evidence for validity and reliability. This questionnaire aims to fill an existing gap expressed by researchers who aim to design and evaluate interventions promoting preparedness through a palliative approach. In addition, policy-makers should benefit from introduction of the Caring Ahead questionnaire as an outcome measure to monitor and evaluate the effectiveness of policies surrounding a palliative approach. / Thesis / Candidate in Philosophy / Providing care to a family member or friend with dementia can be very challenging and different than caring for persons with other disorders. Healthcare providers should provide a palliative approach to care which focuses on quality-of-life and helping family caregivers prepare for end-of-life. However, many family caregivers do not feel prepared for death and this can lead to serious mental health problems in bereavement. This thesis explores what feeling prepared for death means and describes the development and testing of a questionnaire to assess how prepared family caregivers feel for the end-of-life of someone with dementia. Through interviews and surveys with caregivers and professional experts, we developed and tested the Caring Ahead: Preparing for End-of-Life with Dementia questionnaire. Use of the new Caring Ahead questionnaire aims to help us understand how prepared family caregivers are feeling for end-of-life and what supports are needed.
| Identifer | oai:union.ndltd.org:mcmaster.ca/oai:macsphere.mcmaster.ca:11375/25902 |
| Date | January 2020 |
| Creators | Durepos, Pamela |
| Contributors | Kaasalainen, Sharon, Health Sciences |
| Source Sets | McMaster University |
| Language | English |
| Detected Language | English |
| Type | Thesis |
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