Abstract
Purpose
Family caregivers play an important role in caring for patients with advanced cancer. To become competent, individuals must draw on and mobilise an adequate combination of resources. Our goal was to identify the skills developed by caregivers of patients with advanced cancer and the associated resources mobilised. We chose to do it with partners of patients with colon cancer.
Methods
The study used a cross-sectional qualitative design based on 20 individual interviews and a focus group. Partners were recruited from patients treated in three hospitals of France. Semi-structured interviews were conducted until data saturation was achieved. Each interview was transcribed verbatim, and thematic analyses were performed to extract significant themes and subthemes.
Results
Results from the individual and focus group interviews showed that the skills implemented by the partners (in domains of social relationships and health, domestic, organisational, emotional and well-being dimensions) were singular constructs, dependant on if resources (personal, external and schemes) may have been missing and insufficient. In addition, partners may have had these resources but not mobilised them.
Conclusion
The identification of the skills and associated resources could allow healthcare professionals better identifying and understanding of the difficulties met by partners in taking care of patients. This could enable them to offer appropriate support to help the caregivers in their accompaniment.
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Acknowledgements
The authors would like to thank G Ambrosioni (Dijon University Hospital) for her help in including patients and caregivers as well as Dr. Julie Vincent (Georges François Leclerc Centre, Dijon); Dr. Grimault-Duytsche (Chalon-sur-Saône) and Marie-Laure Asensio (Dijon University Hospital) for the logistic coordination of the study; Lydie Rossye, Cassandra Porebski (Dijon University Hospital) for contacting the caregivers and collecting data; Christine Binquet, Claire Bonithon-Kopp (Dijon University Hospital), Christine Rotonda (CIC, Nancy) and Romeo Fontaine (Ledi department, Dijon) for their advice at the start of the project; Gregory Vienot (Dijon University Hospital) for his technical help in video-recording.
Funding
This study was funded by the Burgundy University, the Interregional Ligue against the Cancer and the Malakoff Mederic society. This work was also supported by a French Government grant managed by the French National Research Agency under the program “Investissements of Avenir” (ANR-11-LABX-0021).
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The authors declare that they have no conflict of interest.
Ethical approval
All procedures performed in the study involving human participants were in accordance with the ethical standards of the CPP (French protection person committee. All participants (here patients and their caregivers) were informed about the purpose and nature of the study. In compliance with French law, oral informed consent was obtained from each participant (patients and caregivers) for whom information is included in this article.
Appendices
Appendix 1 Interview guide
Background: Could you present yourselves, speak to me about you, your couple?
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Studies, profession
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Retrace the construction of the couple (meeting, children...)
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Retrace the different activities/centres of interest whether shared or not in the couple
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Way of life (before the diagnosis)
Could you run me through the history of your partner’s illness?
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Your worries (first symptoms, doubts about the disease)
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Announcement of the diagnosis (who was present?)
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Announcement of the treatment
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What role did your doctor play at the time of the diagnosis? (Usual role of the GP/specialist)
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What was the role of the specialist?
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Who did the doctors speak to? (Your partner, you alone, both of you, other people in your family)
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What were your thoughts about the illness? What did it mean to you (representations of the disease) (death, handicap, transition/temporary period...)
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Did you speak to your family and friends about the illness? What reactions? (Usual role of family and friends)
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Did it affect your life in any way? (Lifestyle changes, adaptations, projection into the future, focus on life/activities around the disease)
Could you tell me how your partner has been followed since the discovery of the illness?
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Who is managing the illness?
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How often do you see the doctor/nurses?
How do you organise your everyday life?
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With your partner
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When he/she is in hospital
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With regard to the day-to-day care
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In everyday tasks
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With regard to your work
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With regard to leisure activities (travel, holidays, journeys, etc.)
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With regard to your personal life, going out
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Has the illness (its treatment) modified your everyday habits? Yours personally? Your life as a couple? In what way?
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Financial aspects (additional expenditure, purchase of equipment, etc.)
How are you experiencing this illness?
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With your partner
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And you personally?
Appendix 2
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Meunier-Beillard, N., Ponthier, N., Lepage, C. et al. Identification of resources and skills developed by partners of patients with advanced colon cancer: a qualitative study. Support Care Cancer 26, 4121–4131 (2018). https://doi.org/10.1007/s00520-018-4283-1
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DOI: https://doi.org/10.1007/s00520-018-4283-1