TY - JOUR
T1 - Caring for persons with Dementia
T2 - a qualitative study of the needs of carers following care recipient discharge from hospital
AU - Janice, Du Preez
AU - Antonio, Celenza
AU - Christopher, Etherton Beer
AU - Paula, Moffat
AU - Elissa, Campbell
AU - Glenn, Arendts
N1 - Funding Information:
Funded by a project specific grant from the Research Development Unit of WA Health and the National Health and Medical Research Council GNT 2006061. Funding bodies were not involved in the design of the study and collection, analysis, and interpretation of data.
Publisher Copyright:
© 2023, The Author(s).
PY - 2023/12/13
Y1 - 2023/12/13
N2 - Background: A randomised clinical trial titled the Carer End of Life Planning Intervention (CELPI) in people dying with dementia evaluated the effect of carer education and support about palliative care on care recipient outcomes. We present a pre-planned qualitative analysis of data collected during the CELPI trial in which needs of carers randomised to the study intervention group were assessed using a novel instrument (Carer Needs Directed Assessment in Dementia (CANDID). This tool aimed to identify carers’ perceptions of their own and their care-recipients’ needs and is an important step in identifying support provision for dementia-specific, palliative cares services upon hospital discharge. Methods: The CANDID tool was designed to identify the needs and experiences of primary carers and of their care recipients during the last twelve months of the care recipient’s life. The tool consisted of 33 open-ended questions evaluating: symptom management, emergency contacts, advance care planning, carer’s perception of the care recipient’s future needs, carer’s current needs, and a proposed current and future care plan. The researcher’s philosophical assumption of interpretative phenomenology informed the study and approach to data collection and analysis. Qualitative data collected during interviews using this tool were thematically analysed in five steps: compiling, disassembling, reassembling, interpreting and concluding. An interpretation of participants’ reality emerged from their common experiences and the subjective meanings assigned to actions attached to the phenomena studied. Results: Thirty carer participants were included. Analysis identified three major themes: Carers’ perceived stressors, systemic barriers to care provision, and future planning. Issues identified included barriers to accessing supports, carer health and division between roles, financial burden, familial conflicts, adquate care in hospital and aged care facilities, concern about future needs, and end-of-life discussions. Conclusion: The CANDID tool enabled an evaluation of carer needs and concerns. Identifying those needs may inform a referral to palliative care services where the level of management required may be benenficial for both the person living with dementia and their primary carer. Trial Registration: Australian Clinical Trials Registration: (ACTRN12619001187134).
AB - Background: A randomised clinical trial titled the Carer End of Life Planning Intervention (CELPI) in people dying with dementia evaluated the effect of carer education and support about palliative care on care recipient outcomes. We present a pre-planned qualitative analysis of data collected during the CELPI trial in which needs of carers randomised to the study intervention group were assessed using a novel instrument (Carer Needs Directed Assessment in Dementia (CANDID). This tool aimed to identify carers’ perceptions of their own and their care-recipients’ needs and is an important step in identifying support provision for dementia-specific, palliative cares services upon hospital discharge. Methods: The CANDID tool was designed to identify the needs and experiences of primary carers and of their care recipients during the last twelve months of the care recipient’s life. The tool consisted of 33 open-ended questions evaluating: symptom management, emergency contacts, advance care planning, carer’s perception of the care recipient’s future needs, carer’s current needs, and a proposed current and future care plan. The researcher’s philosophical assumption of interpretative phenomenology informed the study and approach to data collection and analysis. Qualitative data collected during interviews using this tool were thematically analysed in five steps: compiling, disassembling, reassembling, interpreting and concluding. An interpretation of participants’ reality emerged from their common experiences and the subjective meanings assigned to actions attached to the phenomena studied. Results: Thirty carer participants were included. Analysis identified three major themes: Carers’ perceived stressors, systemic barriers to care provision, and future planning. Issues identified included barriers to accessing supports, carer health and division between roles, financial burden, familial conflicts, adquate care in hospital and aged care facilities, concern about future needs, and end-of-life discussions. Conclusion: The CANDID tool enabled an evaluation of carer needs and concerns. Identifying those needs may inform a referral to palliative care services where the level of management required may be benenficial for both the person living with dementia and their primary carer. Trial Registration: Australian Clinical Trials Registration: (ACTRN12619001187134).
KW - Carers
KW - Dementia
KW - End of life
KW - Needs assessment
UR - http://www.scopus.com/inward/record.url?scp=85179650676&partnerID=8YFLogxK
U2 - 10.1186/s12904-023-01322-1
DO - 10.1186/s12904-023-01322-1
M3 - Article
C2 - 38087205
AN - SCOPUS:85179650676
SN - 1472-684X
VL - 22
JO - BMC Palliative Care
JF - BMC Palliative Care
IS - 1
M1 - 200
ER -