Levy Kathryn, Grant Pei C, Depner Rachel M, Tenzek Kelly E, Beaupin Lynda K, Pailler Megan E, Brewer-Spritzer Erin
Department of Research, Hospice & Palliative Care Buffalo, Cheektowaga, New York, USA.
Department of Planning and Research, Trocaire College, Buffalo, New York, USA.
Palliat Med Rep. 2020 Jun 25;1(1):84-91. doi: 10.1089/pmr.2020.0046. eCollection 2020.
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. 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). 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. Eighteen PPCGs participated in POM. Settings included participant homes, the medical campus of the palliative care program, and a community art gallery. 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. Presence ( = 0.003) and search ( = 0.023) for meaning were both positively impacted at post-test. Participants' ratings of well-being ( = 0.037), overall social support ( = 0.004), areas of attachment ( = 0.003), social integration ( = 0.026), reassurance of worth ( = 0.002), and guidance ( = 0.014) significantly increased from pre- to post-test. 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.
照顾有姑息治疗需求的儿童或青少年会对照顾者的身体、心理、经济和社会福祉产生重大影响。由于这种多方面的影响,人们需要基于证据的支持来满足这一人群的独特需求。本研究旨在评估意义照片计划(POM)对儿科姑息治疗照顾者(PPCG)的意义和目的、幸福感以及感知到的社会支持的影响。在八周的时间里,参与者通过社交媒体学习了一个意义构建课程。在干预的社交媒体部分结束后,举办了一次反思与结束活动以及一个社区照片展览。参与者完成了前后测试。18名PPCG参与了POM。活动地点包括参与者家中、姑息治疗项目的医学园区以及一个社区艺术画廊。通过生活意义问卷评估参与者的意义和目的。繁荣量表衡量PPCG的幸福感,而社会支持量表评估感知到的社会支持。在研究结束时,还对参与者进行了满意度调查。测试后,意义的存在(=0.003)和探索(=0.023)均受到积极影响。从测试前到测试后,参与者对幸福感(=0.037)、总体社会支持(=0.004)、依恋领域(=0.003)、社会融合(=0.02