Department of Child and Adolescent Psychiatry, Psychotherapy, and Psychosomatics, University Medical Center Hamburg-Eppendorf, Martinistraße 52, Hamburg, Germany.
J Palliat Med. 2012 Aug;15(8):931-45. doi: 10.1089/jpm.2011.0380.
Although the whole family is affected by a parent's palliative disease, palliative care research does not yet routinely consider patients' minor children. Children's and adolescents' psychosocial functioning may be impaired during prolonged parental disease with poor prognosis. Therefore, more and more health care providers are establishing clinical initiatives for families of palliative patients with minor children. However, the number of these family interventions, as well as their theoretical and empirical backgrounds and evidence base, has yet to be determined. The purpose of this study was to systematically review structured and published interventions for this target group, as well as empirical studies on these interventions. The evidence base and impact of interventions on families were considered. Literature published between 1980 and present focusing on psychosocial family-, child- or parent-centered interventions during palliative care was retrieved from PsycINFO®, Embase, MEDLINE®, CINAHL®, and PSYNDEX databases. Five interventions met the inclusion criteria. Programs focused on different populations, had diverse empirical and theoretical backgrounds and features, and were evaluated by studies of varying methodological quality. This systematic review illustrates the lack of well designed and elaborated intervention concepts and evaluation studies in this field, highlighting the necessity of conceptual and methodological rigor to inform clinical practice on a sustainable basis in the future.
虽然整个家庭都会受到父母临终疾病的影响,但临终关怀研究还没有将患者未成年子女的情况纳入常规考虑范围。当父母患有预后不良的慢性疾病时,儿童和青少年的心理社会功能可能会受损。因此,越来越多的医疗保健提供者正在为有未成年子女的临终患者家庭制定临床干预措施。然而,这些家庭干预措施的数量,以及它们的理论和实证背景和证据基础,仍有待确定。本研究的目的是系统地回顾针对这一目标群体的结构化和已发表的干预措施,以及针对这些干预措施的实证研究。考虑了干预措施对家庭的证据基础和影响。从 PsycINFO®、Embase、MEDLINE®、CINAHL®和 PSYNDEX 数据库中检索了 1980 年至今发表的、专注于临终关怀期间家庭、儿童或父母为中心的心理社会干预的文献。符合纳入标准的有 5 项干预措施。这些方案关注不同的人群,具有不同的实证和理论背景及特点,并且通过不同质量的研究进行了评估。本系统综述说明了在这一领域缺乏精心设计和完善的干预概念和评估研究,突出了未来在可持续的基础上为临床实践提供信息的概念和方法严谨性的必要性。