Parents, Social Media, and End of Life Care in Pediatric Rare Disease

IF 3.2 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management Pub Date : 2025-04-10 DOI:10.1016/j.jpainsymman.2025.02.094

Claire Fanning BS, Alangoya Tezel MD HEC-C, Elizabeth Gregory (Goudie) LMSW APHSW-C, Marin Arnolds MD, Adam Marks MD MPH FAAHPM HEC-C

{"title":"Parents, Social Media, and End of Life Care in Pediatric Rare Disease","authors":"Claire Fanning BS, Alangoya Tezel MD HEC-C, Elizabeth Gregory (Goudie) LMSW APHSW-C, Marin Arnolds MD, Adam Marks MD MPH FAAHPM HEC-C","doi":"10.1016/j.jpainsymman.2025.02.094","DOIUrl":null,"url":null,"abstract":"<div><h3>Outcomes</h3><div>1. Participants will be able to evaluate and apply strategies for supporting families of children with rare diseases, focusing on end-of-life care goals and the evolving usefulness of social media groups throughout the course of a child's rare disease.</div><div>2. Participants will integrate new knowledge of the benefits and risks associated with social media engagement into their counseling for families of children with rare disease, particularly in mitigating misinformation, polarization, and the challenge of groups’ lack of support for different goals of care and end-of-life decisions.</div></div><div><h3>Key Message</h3><div>This session explores the unique challenges encountered by families of children with rare diseases, emphasizing social media's role in connecting these families. We will discuss the benefits and potential harms of parental social media engagement throughout the trajectory of their child's disease, highlighting the lack of support for differing end-of-life care goals, and strategies to enhance support for these families.</div></div><div><h3>Abstract</h3><div>Families of children with rare disease encounter unique barriers, including feelings of isolation, limited clinical trials, and medical teams’ unfamiliarity with diagnoses (1). Social media (SM) has become an important tool for families to connect and share resources (2) but may risk polarization and misinformation (3). Our presentation will include a clinical case, literature review, and our study's data.</div></div><div><h3>Objectives</h3><div>Determine how parents of children with rare disease engage with SM throughout their child's life and death, and if groups are welcoming toward different end-of-life care goals.</div></div><div><h3>Methods</h3><div>Our mixed-methods study includes surveys of parents of children with rare disease who died at one institution between 7/1/2019 and 7/1/2022 and open-ended interviews with a subset of these parents. The survey collected demographics, parents’ end-of-life goals for their child, and assessed SM group engagement. Interviews were audiotaped, transcribed, and thematically analyzed using qualitative research software.</div></div><div><h3>Results</h3><div>One hundred and fifty-nine families met criteria and were invited to participate. Twenty-nine of 46 families who consented completed the survey (63% response rate). Twelve families completed interviews. Participants who engaged with SM (65%) found it generally helpful, though less supportive around and following their child's death. Thematic analysis revealed a temporality to families’ SM engagement throughout their child's life: initially beneficial for connections and resources, less helpful and potentially harmful near end-of-life when personal connections were paramount, and helpful during healing and reflections albeit with important gaps. All families of children with cardiac diagnoses (<em>n</em> = 7) joined SM groups compared to 50% with genetic (<em>n</em> = 7) or oncologic (<em>n</em> = 3) diagnoses (<em>P</em> = 0.06).</div></div><div><h3>Conclusion</h3><div>Most families found SM groups valuable at some point during their child's illness. Benefits may decrease overtime as differing care goals emerge that are not represented or welcomed by the group. Palliative care providers should counsel families transitioning to comfort-focused care that online groups may be less supportive.</div></div><div><h3>References</h3><div>1. Walter AL, Baty F, Rassouli F, Bilz S, Brutsche MH. Diagnostic precision and identification of rare diseases is dependent on distance of residence relative to tertiary medical facilities. Orphanet J. Rare Dis 2021;16(1):1-8. 2. Schumacher KR, Stringer KA, Donohue JE et al. Social media methods for studying rare diseases. Pediatrics 2014;133(5):1345-1353. 3. Hoffman BL, Felter EM, Chu KH et al. It's not all about autism: The emerging landscape of anti-vaccination sentiment on Facebook. Vaccine 2019;37(16):2216-2223.</div></div>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":"69 5","pages":"Pages e466-e467"},"PeriodicalIF":3.2000,"publicationDate":"2025-04-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of pain and symptom management","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S088539242500154X","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}

引用次数: 0

Outcomes

1. Participants will be able to evaluate and apply strategies for supporting families of children with rare diseases, focusing on end-of-life care goals and the evolving usefulness of social media groups throughout the course of a child's rare disease.

2. Participants will integrate new knowledge of the benefits and risks associated with social media engagement into their counseling for families of children with rare disease, particularly in mitigating misinformation, polarization, and the challenge of groups’ lack of support for different goals of care and end-of-life decisions.

Key Message

This session explores the unique challenges encountered by families of children with rare diseases, emphasizing social media's role in connecting these families. We will discuss the benefits and potential harms of parental social media engagement throughout the trajectory of their child's disease, highlighting the lack of support for differing end-of-life care goals, and strategies to enhance support for these families.

Abstract

Families of children with rare disease encounter unique barriers, including feelings of isolation, limited clinical trials, and medical teams’ unfamiliarity with diagnoses (1). Social media (SM) has become an important tool for families to connect and share resources (2) but may risk polarization and misinformation (3). Our presentation will include a clinical case, literature review, and our study's data.

Objectives

Determine how parents of children with rare disease engage with SM throughout their child's life and death, and if groups are welcoming toward different end-of-life care goals.

Methods

Our mixed-methods study includes surveys of parents of children with rare disease who died at one institution between 7/1/2019 and 7/1/2022 and open-ended interviews with a subset of these parents. The survey collected demographics, parents’ end-of-life goals for their child, and assessed SM group engagement. Interviews were audiotaped, transcribed, and thematically analyzed using qualitative research software.

Results

One hundred and fifty-nine families met criteria and were invited to participate. Twenty-nine of 46 families who consented completed the survey (63% response rate). Twelve families completed interviews. Participants who engaged with SM (65%) found it generally helpful, though less supportive around and following their child's death. Thematic analysis revealed a temporality to families’ SM engagement throughout their child's life: initially beneficial for connections and resources, less helpful and potentially harmful near end-of-life when personal connections were paramount, and helpful during healing and reflections albeit with important gaps. All families of children with cardiac diagnoses (n = 7) joined SM groups compared to 50% with genetic (n = 7) or oncologic (n = 3) diagnoses (P = 0.06).

Conclusion

Most families found SM groups valuable at some point during their child's illness. Benefits may decrease overtime as differing care goals emerge that are not represented or welcomed by the group. Palliative care providers should counsel families transitioning to comfort-focused care that online groups may be less supportive.

References

1. Walter AL, Baty F, Rassouli F, Bilz S, Brutsche MH. Diagnostic precision and identification of rare diseases is dependent on distance of residence relative to tertiary medical facilities. Orphanet J. Rare Dis 2021;16(1):1-8. 2. Schumacher KR, Stringer KA, Donohue JE et al. Social media methods for studying rare diseases. Pediatrics 2014;133(5):1345-1353. 3. Hoffman BL, Felter EM, Chu KH et al. It's not all about autism: The emerging landscape of anti-vaccination sentiment on Facebook. Vaccine 2019;37(16):2216-2223.

查看原文本刊更多论文

儿童罕见疾病的父母、社交媒体和临终关怀

Outcomes1。参与者将能够评估和应用支持罕见疾病儿童家庭的策略，重点关注生命末期护理目标和在儿童罕见疾病的整个过程中社交媒体群体的不断发展的有用性。参与者将把与社交媒体参与相关的益处和风险的新知识整合到他们对罕见疾病儿童家庭的咨询中，特别是在减少错误信息、两极分化以及群体缺乏对不同护理目标和临终决定的支持的挑战方面。本次会议探讨了罕见病儿童家庭所面临的独特挑战，强调了社交媒体在连接这些家庭方面的作用。我们将讨论在孩子患病的整个过程中，父母参与社交媒体的好处和潜在危害，强调缺乏对不同临终关怀目标的支持，以及加强对这些家庭支持的策略。【摘要】罕见病儿童的家庭面临着独特的障碍，包括孤立感、有限的临床试验和医疗团队对诊断的不熟悉(1)。社交媒体（SM）已成为家庭联系和共享资源的重要工具(2)，但可能存在两极分化和错误信息(3)。我们的报告将包括一个临床病例、文献综述和我们的研究数据。目的：确定患有罕见疾病儿童的父母在其孩子的一生和死亡中如何参与SM，以及群体是否欢迎不同的临终关怀目标。我们的混合方法研究包括对2019年7月1日至2022年7月1日期间在一家机构死亡的罕见病儿童的父母进行调查，并对其中一部分父母进行开放式访谈。该调查收集了人口统计数据、父母对孩子的临终目标，并评估了SM群体的参与度。访谈录音，转录，并使用定性研究软件进行主题分析。结果159个家庭符合标准，被邀请参与调查。46个同意的家庭中有29个完成了调查（63%的回复率）。12个家庭完成了访谈。参与SM的参与者（65%）认为它总体上是有帮助的，尽管在孩子去世前后支持较少。主题分析揭示了家庭在孩子的一生中参与SM的临时性：最初对联系和资源有益，在生命末期，当人际关系至关重要时，帮助不大，甚至可能有害，在愈合和反思过程中有帮助，尽管有重要的差距。诊断为心脏病（n = 7）的儿童家庭全部加入SM组，而诊断为遗传（n = 7）或肿瘤（n = 3）（P = 0.06）的儿童家庭加入SM组的比例为50%。结论：大多数家庭在孩子生病期间发现SM团体是有价值的。随着不同的护理目标的出现，福利可能会随着时间的推移而减少，而这些目标不受群体的代表或欢迎。姑息治疗提供者应建议家庭过渡到以舒适为中心的护理，网上团体可能会减少支持。参考文献1。Walter AL, Baty F, Rassouli F, Bilz S, Brutsche MH.罕见病的诊断精度和识别取决于居住地相对于三级医疗设施的距离。孤儿[j] .稀有疾病杂志；2016;16(1):1-8。2. Schumacher KR, Stringer KA， Donohue JE等。研究罕见疾病的社交媒体方法。儿科2014;133(5):1345 - 1353。3. 李建军，李建军，李建军等。这不仅仅是关于自闭症：Facebook上出现的反疫苗情绪。疫苗2019;37(16):2216 - 2223。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

Journal of pain and symptom management 医学-临床神经学

CiteScore

8.90

自引率

6.40%

发文量

821

审稿时长

26 days

期刊介绍： The Journal of Pain and Symptom Management is an internationally respected, peer-reviewed journal and serves an interdisciplinary audience of professionals by providing a forum for the publication of the latest clinical research and best practices related to the relief of illness burden among patients afflicted with serious or life-threatening illness.