Isabel Boersma1, Jacqueline Jones2, Christina Coughlan1, Julie Carter3, David Bekelman4,5, Janis Miyasaki6, Jean Kutner4, Benzi Kluger1. 1. 1 The Department of Neurology, University of Colorado Anschutz Medical Campus , Aurora, Colorado. 2. 2 The College of Nursing, University of Colorado Anschutz Medical Campus , Aurora, Colorado. 3. 3 The Department of Neurology, Oregon Health and Science University , Portland, Oregon. 4. 4 The Department of Internal Medicine, University of Colorado Anschutz Medical Campus , Aurora, Colorado. 5. 5 Departments of Medicine and Veterans Affairs Medical Center , Denver, Colorado. 6. 6 The Division of Neurology, University of Alberta , Edmonton, Alberta.
Abstract
BACKGROUND: Palliative care for Parkinson's disease (PD) is an emerging area of interest for clinicians, patients and families. Identifying the palliative care needs of caregivers is central to developing and implementing palliative services for families affected by PD. The objective of this paper was to elicit PD caregiver needs, salient concerns, and preferences for care using a palliative care framework. MATERIALS AND METHODS: 11 PD caregivers and one non-overlapping focus group (n = 4) recruited from an academic medical center and community support groups participated in qualitative semi-structured interviews. Interviews and focus group discussion were digitally recorded, transcribed and entered into ATLAS.ti for coding and analysis. We used inductive qualitative data analysis techniques to interpret responses. RESULTS: Caregivers desired access to emotional support and education regarding the course of PD, how to handle emergent situations (e.g. falls and psychosis) and medications. Participants discussed the immediate impact of motor and non-motor symptoms as well as concerns about the future, including: finances, living situation, and caretaking challenges in advanced disease. Caregivers commented on the impact of PD on their social life and communication issues between themselves and patient. All participants expressed interest and openness to multidisciplinary approaches for addressing these needs. CONCLUSIONS: Caregivers of PD patients have considerable needs that may be met through a palliative care approach. Caregivers were receptive to the idea of multidisciplinary care in order to meet these needs. Future research efforts are needed to develop and test the clinical and cost effectiveness of palliative services for PD caregivers.
BACKGROUND: Palliative care for Parkinson's disease (PD) is an emerging area of interest for clinicians, patients and families. Identifying the palliative care needs of caregivers is central to developing and implementing palliative services for families affected by PD. The objective of this paper was to elicit PD caregiver needs, salient concerns, and preferences for care using a palliative care framework. MATERIALS AND METHODS: 11 PD caregivers and one non-overlapping focus group (n = 4) recruited from an academic medical center and community support groups participated in qualitative semi-structured interviews. Interviews and focus group discussion were digitally recorded, transcribed and entered into ATLAS.ti for coding and analysis. We used inductive qualitative data analysis techniques to interpret responses. RESULTS: Caregivers desired access to emotional support and education regarding the course of PD, how to handle emergent situations (e.g. falls and psychosis) and medications. Participants discussed the immediate impact of motor and non-motor symptoms as well as concerns about the future, including: finances, living situation, and caretaking challenges in advanced disease. Caregivers commented on the impact of PD on their social life and communication issues between themselves and patient. All participants expressed interest and openness to multidisciplinary approaches for addressing these needs. CONCLUSIONS: Caregivers of PDpatients have considerable needs that may be met through a palliative care approach. Caregivers were receptive to the idea of multidisciplinary care in order to meet these needs. Future research efforts are needed to develop and test the clinical and cost effectiveness of palliative services for PD caregivers.
Entities:
Keywords:
Parkinson's disease; care preferences; caregiver needs; qualitative
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