Killackey Tieghan, Soltani Sabine, Noel Melanie, Birnie Kathryn A, Choinière Manon, Pagé M Gabrielle, Dassieu Lise, Lacasse Anaïs, Lalloo Chitra, Poulin Patricia, Ali Samina, Baerg Krista, Battaglia Marco, Campbell Fiona, Mohabir Vina, Nishat Fareha, Kelly Rachel, Lund Tatiana, Isaac-Bertrand Ariane, Benayon Myles, Jordan Isabel, Stinson Jennifer
Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada.
Department of Psychology, University of Calgary, Calgary, Alberta, Canada.
Can J Pain. 2023 Feb 6;7(2):2157251. doi: 10.1080/24740527.2022.2157251. eCollection 2023.
Pediatric chronic pain is a significant problem in Canada, affecting one in five youth. This study describes the impact of the pandemic on the experiences of Canadian families living with chronic pain through interviews with youth living with chronic pain, parents, and siblings.
Employing a qualitative descriptive design, in-depth semistructured interviews were completed with Canadian youth living with pain, as well as parents and siblings. Participants were not required to be related. Interviews were analyzed using a reflexive thematic analysis approach.
Forty-four interviews were completed with 14 parents, 19 youth with chronic pain, and 11 siblings from across the country. Three key themes were developed: (1) absorbing and shifting: the toll of the pandemic on the family system (e.g., loss of coping mechanisms, shifting roles to respond to the pandemic), (2) social ambiguity and abandonment (e.g., social sacrifice and abandonment by the health care system), and (3) building community resilience: familial adaptation to the pandemic (e.g., family cohesion, confidence, and self-management).
DISCUSSION/CONCLUSIONS: Youth, parents, and siblings reported that the pandemic impacted coping strategies across the family system. These results outline the challenges youth experienced managing their pain and overall health throughout the pandemic and the resilience built within families during this time. Going forward, it would be relevant to examine how racialized and structurally marginalized youth with chronic pain and their families experienced the pandemic. Future research should examine how unexpected benefits of the pandemic (e.g., increased confidence and self-management) may be sustained into the future.
小儿慢性疼痛在加拿大是一个重大问题,影响着五分之一的青少年。本研究通过对患有慢性疼痛的青少年、父母和兄弟姐妹进行访谈,描述了疫情对加拿大慢性疼痛家庭经历的影响。
采用定性描述性设计,对加拿大疼痛青少年以及父母和兄弟姐妹进行了深入的半结构化访谈。参与者不要求有亲属关系。访谈采用反思性主题分析方法进行分析。
对来自全国各地的14名父母、19名患有慢性疼痛的青少年和11名兄弟姐妹进行了44次访谈。形成了三个关键主题:(1)承受与转变:疫情对家庭系统的影响(如应对机制的丧失、为应对疫情而角色转变),(2)社会模糊性与被抛弃感(如社会牺牲和被医疗系统抛弃),以及(3)建立社区复原力:家庭对疫情的适应(如家庭凝聚力、信心和自我管理)。
讨论/结论:青少年、父母和兄弟姐妹报告说,疫情影响了整个家庭系统的应对策略。这些结果概述了青少年在疫情期间管理疼痛和整体健康方面所经历的挑战,以及在此期间家庭建立的复原力。展望未来,研究种族化和在结构上处于边缘地位的慢性疼痛青少年及其家庭如何经历疫情将具有重要意义。未来的研究应考察疫情带来的意外好处(如信心和自我管理能力的提高)如何在未来得以持续。