TY - JOUR

T1 - Evaluation of a multimodal rehabilitative palliative care programme for patients with high-grade glioma and their family caregivers

AU - Nordentoft, Sara

AU - Dieperink, Karin B.

AU - Johansson, Susan D.

AU - Jarden, Mary

AU - Piil, Karin

N1 - Publisher Copyright: © 2021 Nordic College of Caring Science

PY - 2022

Y1 - 2022

N2 - Background: Patients diagnosed with high-grade glioma and their family caregivers often experience intense disease and treatment trajectories. Fluctuations in patient's symptoms lead to enormous burdens for caregivers and the risk of developing symptoms of stress, anxiety, and depression. Aim: The study aim is to explore patient and caregiver experiences and evaluate the relevance of and satisfaction with a multimodal rehabilitative palliative care programme for patients diagnosed with a high-grade glioma and their family caregivers. Methods: In a longitudinal multi-methods study, adult patients with high-grade glioma (n = 17) and their family caregivers (n = 16) completed a 4-day residential programme and a 2-day follow-up programme 3 months later. Participants completed questionnaires after each programme, scoring relevance and satisfaction on a 5-point Likert scale. Qualitative data were collected during four evaluation group interviews with patients and caregivers. Results: The mean overall satisfaction score was 4.80 (standard deviation [SD], 0.55) for the initial 4-day programme and 4.28 (SD, 0.83) for the follow-up programme. Three themes emerged in the evaluation group interviews: (1) meeting peers strengthens social well-being, (2) the value of information and focusing on individual needs, and (3) accepting life as an unpredictable passage. Conclusion: Participants found completing the REHPA-HGG programme feasible and rated all sessions highly for relevance and satisfaction. Qualitative findings confirm the value of individualised information, acceptance, and peer interactions. Implication for practice: A multimodal rehabilitative palliative care programme addressed unmet patient and caregiver needs. Peer-to-peer interventions for family caregivers may address individual support needs. Similar programmes may maximise benefit by avoiding planned behaviour changes and enhancing palliative approaches.

AB - Background: Patients diagnosed with high-grade glioma and their family caregivers often experience intense disease and treatment trajectories. Fluctuations in patient's symptoms lead to enormous burdens for caregivers and the risk of developing symptoms of stress, anxiety, and depression. Aim: The study aim is to explore patient and caregiver experiences and evaluate the relevance of and satisfaction with a multimodal rehabilitative palliative care programme for patients diagnosed with a high-grade glioma and their family caregivers. Methods: In a longitudinal multi-methods study, adult patients with high-grade glioma (n = 17) and their family caregivers (n = 16) completed a 4-day residential programme and a 2-day follow-up programme 3 months later. Participants completed questionnaires after each programme, scoring relevance and satisfaction on a 5-point Likert scale. Qualitative data were collected during four evaluation group interviews with patients and caregivers. Results: The mean overall satisfaction score was 4.80 (standard deviation [SD], 0.55) for the initial 4-day programme and 4.28 (SD, 0.83) for the follow-up programme. Three themes emerged in the evaluation group interviews: (1) meeting peers strengthens social well-being, (2) the value of information and focusing on individual needs, and (3) accepting life as an unpredictable passage. Conclusion: Participants found completing the REHPA-HGG programme feasible and rated all sessions highly for relevance and satisfaction. Qualitative findings confirm the value of individualised information, acceptance, and peer interactions. Implication for practice: A multimodal rehabilitative palliative care programme addressed unmet patient and caregiver needs. Peer-to-peer interventions for family caregivers may address individual support needs. Similar programmes may maximise benefit by avoiding planned behaviour changes and enhancing palliative approaches.

KW - caregiver

KW - evaluation

KW - family

KW - high-grade glioma

KW - neuro-oncology

KW - palliative care

KW - rehabilitation

KW - supportive care

U2 - 10.1111/scs.13019

DO - 10.1111/scs.13019

M3 - Journal article

C2 - 34296773

AN - SCOPUS:85111267383

VL - 36

SP - 815

EP - 829

JO - Scandinavian Journal of Caring Sciences

JF - Scandinavian Journal of Caring Sciences

SN - 0283-9318

IS - 3

ER -