Kathryn Levy1, Pei C Grant1, Rachel M Depner1,2, Kelly E Tenzek3, Megan E Pailler4, Lynda K Beaupin5, Jennifer M Breier1, David J Byrwa1,6. 1. 1 Palliative Care Institute, The Center for Hospice & Palliative Care, Cheektowaga, NY, USA. 2. 2 Department of Counseling, School and Educational Psychology, University at Buffalo, The State University of New York, Buffalo, NY, USA. 3. 3 Department of Communication, University at Buffalo, The State University of New York, Buffalo, NY, USA. 4. 4 Department of Psychosocial Oncology, Roswell Park Cancer Institute, Buffalo, NY, USA. 5. 5 Roswell Park Cancer Institute, Buffalo, NY, USA. 6. 6 School of Medicine, University at Buffalo, The State University of New York, Buffalo, NY, USA.
Abstract
BACKGROUND: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental, physical, financial, and social strain. There is limited research on the creation and evaluation of interventions specifically for this population despite clear need. OBJECTIVE: This study aims to evaluate the feasibility and engagement of the Photographs of Meaning Program, a modified meaning-making intervention for pediatric palliative caregivers. DESIGN: Participants completed a pre-post intervention meaning-in-life measure. Over a 9-week period, participants followed a meaning-making curriculum whereby they created and shared photo narratives via social media. As part of the intervention, a community photo exhibition was held featuring these photo narratives. Exit interviews were also conducted at study close. SETTING/PARTICIPANTS: Nine individuals providing informal care to children in a pediatric palliative care program participated in the intervention. All participants were female and are older than 18 years. Settings for research include participant homes and at The Center for Hospice and Palliative Care in Cheektowaga, New York. RESULTS: Participants posted 95 photographs and 96 narratives during the intervention, posting on average once each week. Statistical analysis within the small sample indicated an increased presence of meaning in the lives of participants ( P = .022). Exit interviews conveyed satisfaction with the intervention. CONCLUSIONS: Findings suggest that the Photographs of Meaning Program is a practical intervention with life-enhancing potential for pediatric palliative. Future research should aim to collect additional evidence of the intervention's effectiveness.
BACKGROUND: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental, physical, financial, and social strain. There is limited research on the creation and evaluation of interventions specifically for this population despite clear need. OBJECTIVE: This study aims to evaluate the feasibility and engagement of the Photographs of Meaning Program, a modified meaning-making intervention for pediatric palliative caregivers. DESIGN: Participants completed a pre-post intervention meaning-in-life measure. Over a 9-week period, participants followed a meaning-making curriculum whereby they created and shared photo narratives via social media. As part of the intervention, a community photo exhibition was held featuring these photo narratives. Exit interviews were also conducted at study close. SETTING/PARTICIPANTS: Nine individuals providing informal care to children in a pediatric palliative care program participated in the intervention. All participants were female and are older than 18 years. Settings for research include participant homes and at The Center for Hospice and Palliative Care in Cheektowaga, New York. RESULTS: Participants posted 95 photographs and 96 narratives during the intervention, posting on average once each week. Statistical analysis within the small sample indicated an increased presence of meaning in the lives of participants ( P = .022). Exit interviews conveyed satisfaction with the intervention. CONCLUSIONS: Findings suggest that the Photographs of Meaning Program is a practical intervention with life-enhancing potential for pediatric palliative. Future research should aim to collect additional evidence of the intervention's effectiveness.
Entities:
Keywords:
caregiver; meaning-centered psychotherapy; pediatric; pediatric caregiver; pediatric palliative care; photovoice; social media
Authors: Megan E Pailler; Lynda K Beaupin; Erin Brewer-Spritzer; Pei C Grant; Rachel M Depner; Kathryn Levy; Kelly E Tenzek Journal: J Adolesc Young Adult Oncol Date: 2020-04-07 Impact factor: 2.223
Authors: Terrah Foster Akard; Sarah Wray; Debra L Friedman; Mary S Dietrich; Verna Hendricks-Ferguson; Barbara Given; Cynthia A Gerhardt; Pamela S Hinds; Mary Jo Gilmer Journal: J Hosp Palliat Nurs Date: 2020-02 Impact factor: 2.131
Authors: Terrah Foster Akard; Samantha Burley; Maggie C Root; Mary S Dietrich; Brittany Cowfer; Kim Mooney-Doyle Journal: Palliat Med Rep Date: 2021-08-13
Authors: Terrah Foster Akard; Mary S Dietrich; Debra L Friedman; Cynthia A Gerhardt; Barbara Given; Verna Hendricks-Ferguson; Pamela S Hinds; Sheila H Ridner; Nicole Beckmann; Mary Jo Gilmer Journal: Prog Palliat Care Date: 2020-10-20
Authors: Kathryn Levy; Pei C Grant; Rachel M Depner; Kelly E Tenzek; Lynda K Beaupin; Megan E Pailler; Erin Brewer-Spritzer Journal: Palliat Med Rep Date: 2020-06-25