Pamela Durepos1,2, Jenny Ploeg1,3, Noori Akhtar-Danesh1, Tamara Sussman4, Elizabeth Orr1, Sharon Kaasalainen1. 1. McMaster University, Faculty of Health Sciences, School of Nursing, Hamilton, Ontario, Canada. 2. Hamilton Health Sciences Corporation, Hamilton, Ontario, Canada. 3. Aging, Community and Health Research Unit, Hamilton, Ontario, Canada. 4. Department of Social Work, McGill University, Montreal, Quebec, Canada.
Abstract
Objectives: Death preparedness amongst family caregivers (CG) is a valuable and measurable concept. Preparedness predicts CG outcomes in bereavement and is modifiable through a palliative approach which includes advance care planning (ACP) interventions. Improving death preparedness is important for CGs of persons with dementia (PwD) whom are more likely to develop negative outcomes in bereavement, and experience less than adequate palliative care. However, the adequacy of existing tools to measure death preparedness in CGs of PwD is unknown, which limits intervention design and prospective evaluation of ACP effectiveness. Methods: We conducted a review and evaluation of existing tools measuring the attribute domains and traits of CG death preparedness. Literature was searched for articles describing caregiving at end of life (EOL). Measurement tools were extracted, screened for inclusion criteria, and data extracted regarding: conceptual basis, population of development, and psychometrics. Tool content was compared to preparedness domains/traits to assess congruency and evaluate the adequacy of tools as measures of death preparedness for CGs of PwD. Results: Authors extracted 569 tools from articles, retaining seven tools for evaluation. The majority of tools, n = 5 (70%) did not sample all preparedness domains/traits. Few tools had items specific to EOL; only one tool had a specific item questioning CG preparedness for death, and only one tool had items specific to dementia. Conclusion: Limitations in existing tools suggest they are not adequate measures of death preparedness for CGs of PwD. Consequently, the authors are currently developing a questionnaire to be titled, 'Caring Ahead' for this purpose.
Objectives: Death preparedness amongst family caregivers (CG) is a valuable and measurable concept. Preparedness predicts CG outcomes in bereavement and is modifiable through a palliative approach which includes advance care planning (ACP) interventions. Improving death preparedness is important for CGs of persons with dementia (PwD) whom are more likely to develop negative outcomes in bereavement, and experience less than adequate palliative care. However, the adequacy of existing tools to measure death preparedness in CGs of PwD is unknown, which limits intervention design and prospective evaluation of ACP effectiveness. Methods: We conducted a review and evaluation of existing tools measuring the attribute domains and traits of CG death preparedness. Literature was searched for articles describing caregiving at end of life (EOL). Measurement tools were extracted, screened for inclusion criteria, and data extracted regarding: conceptual basis, population of development, and psychometrics. Tool content was compared to preparedness domains/traits to assess congruency and evaluate the adequacy of tools as measures of death preparedness for CGs of PwD. Results: Authors extracted 569 tools from articles, retaining seven tools for evaluation. The majority of tools, n = 5 (70%) did not sample all preparedness domains/traits. Few tools had items specific to EOL; only one tool had a specific item questioning CG preparedness for death, and only one tool had items specific to dementia. Conclusion: Limitations in existing tools suggest they are not adequate measures of death preparedness for CGs of PwD. Consequently, the authors are currently developing a questionnaire to be titled, 'Caring Ahead' for this purpose.
Entities:
Keywords:
Death preparedness; advance care planning; dementia and cognitive disorders; easurement instrument
Authors: Kirsten J Moore; Sophie Crawley; Victoria Vickerstaff; Claudia Cooper; Michael King; Elizabeth L Sampson Journal: Int Psychogeriatr Date: 2020-04-03 Impact factor: 3.878