Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada.
Undergraduate Program, Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.
J Palliat Med. 2021 Mar;24(3):391-396. doi: 10.1089/jpm.2020.0274. Epub 2020 Jul 28.
Intellectual and Developmental Disabilities (IDD) are defined as physical/mental impairments before age 18. Not only are many IDD patients living into adulthood, but deinstitutionalization has also led to most living in community settings. Little is known about end-of-life needs in these adults, and existing literature does not examine attitudes of Canadian providers. Thematic and content analysis examined attitudes of Canadian Pediatric Palliative Care (PPC) practitioners on caring for adults with IDD to identify components of care, which could be improved. An anonymized survey was created (Surveymonkey.com) using open-ended and Likert-scale questions, with thematic/subthematic coding on NVivo11. Initial coding included a codebook, which was refined. Independent coding was compared with initial coding. Coded data were reanalyzed after demographic stratification, results discussed, and consensus reached. All Canadian PPC centers responded through snowball sampling (25 of 36 [70%] practitioners). Major themes covered communication and decision making, lack of resources (including access to appropriate services), and knowledge/skill/experience gaps among adult palliative care and generalist practitioners. Gaps included complex medical conditions of IDD patients, trajectories, and related management. Knowledge ratings of adult palliative care and generalist practitioners by respondents were evenly distributed, but only pediatricians gave ratings of poor or worse. PPC practitioners are comfortable being consulted by adult palliative care and generalist colleagues. However, frequency of consults varied dramatically, from one to two times/month in British Columbia to never. PPC practitioners across Canada identified several major issues and barriers to optimal palliative care for adults with IDD.
智力和发育障碍（IDD）定义为 18 岁之前的身体/精神损伤。不仅许多 IDD 患者已进入成年期，而且去机构化也导致他们大多数人生活在社区环境中。这些成年人的临终需求知之甚少，现有文献也没有检查加拿大提供者的态度。通过主题和内容分析，研究了加拿大儿科姑息治疗（PPC）从业者对照顾 IDD 成年患者的态度，以确定可以改进的护理组成部分。使用开放式和李克特量表问题创建了匿名调查（Surveymonkey.com），并在 NVivo11 上进行主题/子主题编码。初始编码包括一个代码本，经过修订。独立编码与初始编码进行了比较。在进行人口统计学分层后重新分析编码数据，讨论结果并达成共识。通过滚雪球抽样（36 个 PPC 中心中的 25 个[70%]从业者），所有加拿大 PPC 中心都做出了回应。主要主题包括沟通和决策、资源匮乏（包括获得适当服务的机会）以及成人姑息治疗和全科医生之间的知识/技能/经验差距。差距包括 IDD 患者的复杂医疗状况、轨迹和相关管理。受访者对成人姑息治疗和全科医生的知识评估均匀分布，但只有儿科医生的评分较差或更差。PPC 从业者愿意接受成人姑息治疗和全科医生的咨询。然而，咨询的频率差异很大，从不列颠哥伦比亚省的每月一到两次到从不咨询。加拿大各地的 PPC 从业者确定了一些主要问题和障碍，这些问题和障碍会影响为 IDD 成年患者提供最佳姑息治疗。
