Palliative Medicine Reports (Jun 2020)

The Photographs of Meaning Program for Pediatric Palliative Caregivers and Its Impact on Meaning, Well-Being, and Perceived Social Support

  • Kathryn Levy,
  • Pei C. Grant,
  • Rachel M. Depner,
  • Kelly E. Tenzek,
  • Lynda K. Beaupin,
  • Megan E. Pailler,
  • Erin Brewer-Spritzer

DOI
https://doi.org/10.1089/PMR.2020.0046
Journal volume & issue
Vol. 1, no. 1
pp. 84 – 91

Abstract

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Background: Caring for a child or adolescent with palliative care needs can significantly influence the physical, mental, financial, and social well-being of caregivers. Due to this multifaceted impact, there is a demand for evidence-based support that meets the distinct needs of this population. Objective: This study aims to evaluate the effect the Photographs of Meaning Program (POM) has on meaning and purpose, well-being, and perceived social support of pediatric palliative caregivers (PPCGs). Design: Over an eight-week period, participants followed a meaning-making curriculum via social media. Following the social media portion of the intervention, a reflection and closure event and a community photograph exhibit were held. Participants completed pre- and post-test measures. Setting/Subjects: Eighteen PPCGs participated in POM. Settings included participant homes, the medical campus of the palliative care program, and a community art gallery. Measurements: Participant meaning and purpose were assessed through the Meaning in Life Questionnaire. The Flourishing Scale measured PPCG well-being, while the Social Provisions Scale assessed perceived social support. Participants were also given a satisfaction survey at study closure. Results: Presence (p?=?0.003) and search (p?=?0.023) for meaning were both positively impacted at post-test. Participants' ratings of well-being (p?=?0.037), overall social support (p?=?0.004), areas of attachment (p?=?0.003), social integration (p?=?0.026), reassurance of worth (p?=?0.002), and guidance (p?=?0.014) significantly increased from pre- to post-test. Conclusions: POM is an effective social media-based intervention for PPCGs. Future research should assess the effectiveness of this intervention in populations with differing demographics and its effect on other psychosocial indicators.

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