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Evaluating the acceptability of a self-directed, self-management intervention for patients and caregivers facing advanced cancer

Published online by Cambridge University Press:  05 February 2025

Sydney Wasserman
Affiliation:
Ingram School of Nursing, McGill University, Montreal, QC, Canada
Lydia Ould Brahim
Affiliation:
Ingram School of Nursing, McGill University, Montreal, QC, Canada
Andrea Maria Laizner
Affiliation:
Ingram School of Nursing, McGill University, Montreal, QC, Canada McGill University Health Centre, Montreal, QC, Canada Research Institute, McGill University Health Centre (RI-MUHC), Montreal, QC, Canada
Anita Mehta
Affiliation:
Ingram School of Nursing, McGill University, Montreal, QC, Canada Department of Psychiatry, CIUSSS West Central Montreal, Jewish General Hospital, Montreal, QC, Canada Montreal Institute of Palliative Care, Teresa Dellar Palliative Care Residence, Montreal, QC, Canada
José Côté
Affiliation:
Faculty of Nursing, Université de Montréal, Montreal, QC, Canada Research Centre of the Centre Hospitalier de l’Université de Montréal (CR-CHUM), Montreal, QC, Canada
Melissa Henry
Affiliation:
Gerald Bronfman Department of Oncology, Faculty of Medicine, McGill University, Montreal, QC, Canada
Kimberly Thibodeau
Affiliation:
McGill University Health Centre, Montreal, QC, Canada School of Social Work, McGill University, Montreal, QC, Canada
Vasiliki Bessy Bitzas
Affiliation:
Ingram School of Nursing, McGill University, Montreal, QC, Canada Palliative Care, Jewish General Hospital, Montreal, QC, Canada
Sylvie D. Lambert*
Affiliation:
Ingram School of Nursing, McGill University, Montreal, QC, Canada Research Institute, McGill University Health Centre (RI-MUHC), Montreal, QC, Canada St. Mary’s Research Centre, Montreal, QC, Canada
*
Corresponding author: Sylvie D. Lambert; Email: sylvie.lambert@mcgill.ca
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Abstract

Objectives

Coping-Together is a self-directed, self-management intervention initially developed for patients in early-stages of cancer and their caregivers. This study evaluated its acceptability among patients with advanced cancer and their caregivers.

Methods

Twenty-six participants (patients with advanced cancer n = 15 and their caregivers n = 11) were given the Coping-Together materials (6 booklets and a workbook) for 7 weeks. Participants were interviewed twice during this time to solicit feedback on the intervention’s content, design, and recommended changes. Audio-recorded interviews were transcribed verbatim, and thematic analysis was conducted.

Results

Participants found Coping-Together was mostly relevant. All (n = 26, 100%) participants expressed interest and a desire to improve their self-management skills. Perceived benefits included learning to develop SMARTTER (specific, measurable, attainable, relevant, timely, and done together) self-management plans, normalizing challenges, and enhancing communication within the dyad and with their healthcare team. Most (n = 25, 96%) identified strategies from the booklets that benefited them. Top strategies learned were skills to manage physical health (n = 20, 77%) (e.g., monitoring symptoms), emotional well-being (n = 21, 81%) (e.g., reducing stress by reframing thoughts), as well as social well-being (n = 24, 92%) (e.g., communicating with their healthcare team). Barriers included illness severity and time constraints. The unique advanced cancer needs that are to be integrated include support related to fear of death, uncertainty, palliative care and advanced care planning. Suggested modifications involved enhancing accessibility and including more advanced cancer information (e.g., end-of-life planning, comfort care, resources).

Significance of results

Participants reported several benefits from using Coping-Together, with minimal adaptations needed. Creating SMARTTER self-management plans helped them implement self-management strategies. Specific areas for improvement addressed the need for improved accessibility and more content related to advanced cancer. Findings demonstrate how Coping-Together is acceptable for those living with advanced cancer and their caregivers, offering much of the support needed to enhance day-to-day quality of life.

Information

Type
Original Article
Copyright
© The Author(s), 2025. Published by Cambridge University Press.
Figure 0

Figure 1. Expected impact of Coping-Together on patients’ and caregivers’ quality of life.

Figure 1

Table 1. Coping-Together intervention

Figure 2

Figure 2. CONSORT diagram (EQUATOR Network., n.d.).

Figure 3

Table 2. Maintaining methodological rigor

Figure 4

Table 3. Participant sociodemographic information

Figure 5

Table 4. Summary of findings

Figure 6

Table 5. Suggested adaptations for Coping-Together advanced

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