Nicholas David B, Calhoun Avery, McLaughlin Anne Marie, Shankar Janki, Kreitzer Linda, Uzande Masimba
University of Calgary, Edmonton, Alberta, Canada.
Glob Qual Nurs Res. 2017 Jul 25;4:2333393617721646. doi: 10.1177/2333393617721646. eCollection 2017 Jan-Dec.
Individuals diagnosed with developmental disability and mental illness (a "dual diagnosis") contend with multiple challenges and system-related barriers. Using an interpretive description approach, separate qualitative interviews were conducted with adults with a dual diagnosis ( = 7) and their caregiving parents ( = 8) to examine care-related experiences. Results indicate that individuals with a dual diagnosis and their families experience misunderstanding and stigma. Families provide informal complex care amid insufficient and uncoordinated services but are often excluded from formal care planning. A lack of available funding and services further impedes care. While negative care experiences are reported as prevalent, participants also describe instances of beneficial care. Overall, findings indicate a lack of sufficiently targeted resources, leaving families to absorb system-related care gaps. Recommendations include person- and family-centered care, navigation support, and capacity building. Prevention and emergency and crisis care services, along with housing, vocation, and other supports, are needed. Practice and research development regarding life span needs are recommended.
被诊断患有发育障碍和精神疾病（“双重诊断”）的个体面临着多重挑战和与系统相关的障碍。采用解释性描述方法，分别对患有双重诊断的成年人（n = 7）及其照顾父母（n = 8）进行了定性访谈，以考察与照顾相关的经历。结果表明，患有双重诊断的个体及其家庭经历了误解和污名化。在服务不足且不协调的情况下，家庭提供非正式的复杂照顾，但往往被排除在正式的照顾计划之外。资金和服务的缺乏进一步阻碍了照顾。虽然负面的照顾经历普遍存在，但参与者也描述了有益照顾的事例。总体而言，研究结果表明缺乏足够有针对性的资源，使得家庭不得不填补与系统相关的照顾缺口。建议包括以个人和家庭为中心的照顾、导航支持和能力建设。需要预防、应急和危机护理服务，以及住房、职业和其他支持。建议开展关于生命周期需求的实践和研究。
