BACKGROUND: Family caregiving at home is highly important for people receiving palliative treatment, but also a complex experience, subject to implicit social expectations. This study empirically explored the claim that comics benefit palliative care practice, through evaluating a graphic novel's value as an aid in supportive conversations with family caregivers. AIM: To identify facilitators and barriers in using Naasten (Loved ones), a Dutch research-based graphic novel about family caregivers providing care at the end-of-life. DESIGN: Qualitative study, following thematic content analysis. PARTICIPANTS: Three focus groups with family caregiver consultants, palliative care volunteers, and healthcare professionals (total N = 23) who supported family caregivers; and individual telephone interviews with family caregivers to whom the book was presented (N = 4). RESULTS: Barriers and facilitators related to: (1) the family caregiver, (2) impact on the family caregiver, (3) impact on the conversation between the person who provides support and the family caregiver, (4) their relationship, and (5) the person who provides support. Naasten was reported as recognizable and supportive, and powerful in raising emotions, awareness and conversation. Barriers concerned the book's impact due to its style and guidance of a conversation, and doubts about its surplus-value. CONCLUSIONS: Emotionally impactful comics may support bereaved family caregivers, but should be introduced with care among current family caregivers, for example, ensuring a right fit, introduction, and follow-up-while taking into account a caregiver's individual situation, needs, abilities, and affinity with the medium. Comics are preferably used in educational settings, contributing to professional awareness and tailored support of family caregivers.
BACKGROUND: Family caregiving at home is highly important for people receiving palliative treatment, but also a complex experience, subject to implicit social expectations. This study empirically explored the claim that comics benefit palliative care practice, through evaluating a graphic novel's value as an aid in supportive conversations with family caregivers. AIM: To identify facilitators and barriers in using Naasten (Loved ones), a Dutch research-based graphic novel about family caregivers providing care at the end-of-life. DESIGN: Qualitative study, following thematic content analysis. PARTICIPANTS: Three focus groups with family caregiver consultants, palliative care volunteers, and healthcare professionals (total N = 23) who supported family caregivers; and individual telephone interviews with family caregivers to whom the book was presented (N = 4). RESULTS: Barriers and facilitators related to: (1) the family caregiver, (2) impact on the family caregiver, (3) impact on the conversation between the person who provides support and the family caregiver, (4) their relationship, and (5) the person who provides support. Naasten was reported as recognizable and supportive, and powerful in raising emotions, awareness and conversation. Barriers concerned the book's impact due to its style and guidance of a conversation, and doubts about its surplus-value. CONCLUSIONS: Emotionally impactful comics may support bereaved family caregivers, but should be introduced with care among current family caregivers, for example, ensuring a right fit, introduction, and follow-up-while taking into account a caregiver's individual situation, needs, abilities, and affinity with the medium. Comics are preferably used in educational settings, contributing to professional awareness and tailored support of family caregivers.
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Keywords:
Family caregivers; arts-based research; comic art; education; graphic novels as topic; informal care; palliative care
Authors: Janneke van Roij; Linda Brom; Maggy Youssef-El Soud; Lonneke van de Poll-Franse; Natasja J H Raijmakers Journal: Support Care Cancer Date: 2018-09-13 Impact factor: 3.603