Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, Illinois, USA.
Psychooncology. 2022 Sep;31(9):1589-1596. doi: 10.1002/pon.5991. Epub 2022 Jul 7.
Cancer survivors frequently describe wanting to learn from others who have had similar diagnoses or treatments (peer support). We conducted focus groups to investigate hematopoietic stem cell transplant survivors' attitudes and preferences regarding accessing written peer support through a website. Although written peer support does not allow for interpersonal interactions with peers, it could increase transplant recipients' access to evidence-based benefits of informational and emotional peer support.
We conducted four videoconference focus groups with 34 adult transplant survivors who were diverse in their medical and sociodemographic characteristics and geographic location. Discussions were recorded, transcribed, and content analyzed.
Many participants reported need for information about transplant beyond what they received from their healthcare providers. Needs varied across participants, as did preferences for characteristics and timing of information optimally provided through peer support. Participants were enthusiastic about the value of written peer support but emphasized that it should be delivered in a way that accommodates variation in transplant experiences, underscores its trustworthiness, and pairs it with useful psychoeducational content.
Findings provide guidance for making written peer support an accessible, supportive resource for transplant survivors. Future research should evaluate personalized online delivery of written peer support paired with psychoeducational content that enhances its benefits.
Written peer support delivered online could be a useful, valued resource for transplant survivors.
癌症幸存者经常表示希望从具有类似诊断或治疗经历的人(即同伴支持)那里学习。我们进行了焦点小组讨论,以调查造血干细胞移植幸存者对通过网站获取书面同伴支持的态度和偏好。虽然书面同伴支持不允许与同伴进行人际互动,但它可以增加移植受者获得基于证据的信息和情感同伴支持的益处。
我们与 34 名成年移植幸存者进行了四次视频会议焦点小组讨论,他们在医疗和社会人口统计学特征以及地理位置方面具有多样性。讨论内容被记录、转录并进行了内容分析。
许多参与者报告说需要了解超出他们从医疗保健提供者那里获得的有关移植的信息。参与者的需求各不相同,对通过同伴支持最佳提供的信息的特征和时间的偏好也各不相同。参与者对书面同伴支持的价值表示赞赏,但强调应该以适应移植经历变化、强调其可信度并将其与有用的心理教育内容相结合的方式提供。
这些发现为使书面同伴支持成为移植幸存者可访问的支持资源提供了指导。未来的研究应评估个性化在线提供书面同伴支持与增强其益处的心理教育内容的结合。
在线提供的书面同伴支持可能成为移植幸存者有用且有价值的资源。