Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, TN, USA.
Discipline of Paediatrics and Child Health, School of Clinical Medicine, University of New South Wales, Sydney, Australia.
Support Care Cancer. 2023 Jan 12;31(2):113. doi: 10.1007/s00520-023-07575-z.
A childhood cancer diagnosis threatens the health, safety, and security of the child and whole family unit. A strong relationship between the healthcare team and family is integral to provision of holistic support during this time of crisis. Family-centered care necessitates a fluid, therapeutic relationship between parents and the child's healthcare team. This study investigated bereaved parents' perspectives on their relationship with their child's care team and the impact of these relationships on their coping across the cancer trajectory and into bereavement.
Thirty-one parents whose child died from cancer between 1 and 6 years prior to study enrollment participated in semi-structured interviews about their relationships and interactions with their child's healthcare team across the illness course and into bereavement. We audio-recorded interviews, transcribed them verbatim, and utilized a codebook thematic analysis approach to analyze interview transcripts.
Four themes emerged across interviews with parents describing their perceptions of the parent-clinician relationship: (1) a collaborative approach improves perceptions of care, (2) professional trust is core to the relationship, (3) parental personal preference and bias can limit relationship-building, and (4) meaningful connections form on an emotional, individualized level. These themes highlight relational patterns between parents and clinicians that can promote or erode alliance and collaboration.
Bereaved parents recognize key attributes that influence the parent-clinician relationship. Educating clinicians about parent-identified positive modifiable behaviors (e.g., communication deficits) and awareness of non-modifiable care factors (e.g., individual personality preferences) may enable clinicians to strengthen relationships with parents and ultimately improve quality of care.
儿童癌症诊断威胁着儿童和整个家庭的健康、安全和保障。在这个危机时刻,医疗团队与家庭之间的紧密关系是提供全面支持的关键。以家庭为中心的护理需要父母和儿童医疗团队之间建立一种流畅、治疗性的关系。本研究调查了丧亲父母对他们与孩子护理团队关系的看法,以及这些关系对他们在癌症病程中和丧亲后应对的影响。
31 名父母的孩子在研究入组前 1 至 6 年内死于癌症,他们参加了关于他们在疾病过程中和丧亲后的关系和与孩子的医疗团队互动的半结构化访谈。我们对访谈进行了录音、逐字记录,并采用代码本主题分析方法对访谈记录进行了分析。
在对父母的访谈中出现了四个主题,描述了他们对父母-临床医生关系的看法:(1) 合作方法改善了对护理的看法,(2) 专业信任是关系的核心,(3) 父母的个人偏好和偏见会限制关系的建立,(4) 在情感上形成有意义的个体化联系。这些主题突出了父母和临床医生之间的关系模式,这些模式可以促进或破坏联盟和协作。
丧亲父母认识到影响父母-临床医生关系的关键属性。教育临床医生了解父母确定的积极可改变行为(例如,沟通缺陷)和对不可改变的护理因素(例如,个人性格偏好)的意识,可能使临床医生能够加强与父母的关系,并最终改善护理质量。