Cloyes Kristin G, Guo Jia-Wen, Tennant Karrin E, McCormick Rachael, Mansfield Kelly J, Wawrzynski Sarah E, Classen Sarah C, Jones Eric C, Reblin Maija
College of Nursing, University of Utah, Salt Lake City, UT, United States.
Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa, FL, United States.
Front Oncol. 2022 Apr 8;12:852267. doi: 10.3389/fonc.2022.852267. eCollection 2022.
The purpose of this study was to describe the social support networks and daily support interactions of cancer-affected individuals, including young adult (YA) and LGBTQIA+ survivors and care partners.
Participants were recruited at two United States cancer centers and social media for a pilot study testing a novel online method for collecting prospective, daily social support interaction data (N=28). All participants were aged 18+; survivors had a current or recent cancer diagnosis and were engaged in treatment and/or services; care partners were identified by the survivors. Enrollment also purposefully targeted YA and LGBTQIA+ survivors. Social network data (up to 10 members) were assessed at baseline. Daily online surveys assessed support interactions between participants and specific network members over 14 days. Descriptive statistics summarized data and explored between-group (YA/non-YA, LGBTQIA+/non-LGBTQIA+) differences in social network characteristics (size, heterogeneity, density, centralization, cohesion) and support interactions (support source and type).
There were no significant differences between YA and non-YA participants on any measures. LGBTQIA+ participants' support networks were less dense (Mdn=0.69 vs. 0.82, p=.02), less cohesive (Mdn=0.85 vs. 0.91,.02), more centered on the participant (Mdn=0.40 vs. 0.24, p=.047), and included more LGBTQIA+ members (Mdn=0.35 vs. 0.00, p<.001). LGBTQIA+ participants reported having more interactions with LGBTQIA+ network members (Mdn=14.0 vs. Mdn=0.00, p<.001) and received significantly more of all types of support from LGBTQIA+ vs. non-LGBTQIA+ members. LGBTQIA+ participants also reported receiving more appraisal support than non-LGBTQIA+ (Mdn 21.64 vs. 9.12, p=.008) including more appraisal support from relatives (Mdn=11.73 vs 6.0, p+.037).
Important information related to support access, engagement, and needs is embedded within the everyday contexts of the social networks of cancer-affected people. Individualized, accessible, and prospective assessment could help illuminate how their "real world" support systems are working and identify specific strengths and unmet needs. These insights would inform the development of more culturally competent and tailored interventions to help people understand and leverage their unique support systems. This is particularly critical for groups like YA and LGBTQIA+ survivors and care partners that are underserved by formal support services and underrepresented in cancer, caregiving, and social support research.
本研究旨在描述受癌症影响个体的社会支持网络及日常支持互动情况，包括青年成人（YA）、LGBTQIA+幸存者及其护理伙伴。
在美国的两个癌症中心和社交媒体招募参与者，进行一项试点研究，测试一种收集前瞻性日常社会支持互动数据的新型在线方法（N = 28）。所有参与者年龄在18岁及以上；幸存者目前患有或近期被诊断患有癌症，且正在接受治疗和/或服务；护理伙伴由幸存者确定。招募还特意针对青年成人和LGBTQIA+幸存者。在基线时评估社会网络数据（最多10名成员）。每日在线调查评估参与者与特定网络成员在14天内的支持互动情况。描述性统计总结数据，并探讨组间（青年成人/非青年成人、LGBTQIA+/非LGBTQIA+）在社会网络特征（规模、异质性、密度、集中化、凝聚力）和支持互动（支持来源和类型）方面的差异。
在任何测量指标上，青年成人与非青年成人参与者之间均无显著差异。LGBTQIA+参与者的支持网络密度较低（中位数分别为0.69和0.82，p = 0.02），凝聚力较弱（中位数分别为0.85和0.91，p = 0.02），更以参与者为中心（中位数分别为0.40和0.24，p = 0.047），且包含更多LGBTQIA+成员（中位数分别为0.35和0.00，p < 0.001）。LGBTQIA+参与者报告与LGBTQIA+网络成员的互动更多（中位数分别为14.0和0.00，p < 0.001），并且从LGBTQIA+成员而非非LGBTQIA+成员那里获得的各类支持显著更多。LGBTQIA+参与者还报告比非LGBTQIA+参与者获得更多的评价性支持（中位数分别为21.64和9.12，p = 0.008），包括从亲属那里获得更多的评价性支持（中位数分别为11.73和6.0，p = 0.037）。
与支持获取、参与和需求相关的重要信息蕴含在受癌症影响人群社会网络的日常情境中。个性化、可获取且前瞻性的评估有助于阐明他们“现实世界”的支持系统如何运作，并识别特定的优势和未满足的需求。这些见解将为制定更具文化胜任力且量身定制的干预措施提供依据，以帮助人们理解并利用其独特的支持系统。这对于像青年成人和LGBTQIA+幸存者及其护理伙伴这样在正规支持服务中未得到充分服务且在癌症、护理和社会支持研究中代表性不足的群体尤为关键。
