The experience of hope in families of children and adolescents living with chronic illness: A thematic synthesis of qualitative studies

J Adv Nurs. 2019 Dec;75(12):3246-3262. doi: 10.1111/jan.14129. Epub 2019 Sep 4.

Abstract

Aim: To synthesize qualitative studies on the experience of hope in families of children and adolescents living with chronic illness.

Background: Hope is multidimensional, dynamic, and varies according to experienced events, cultural environments and stage of life. The qualitative synthesis of the experience of hope in the paediatric population with chronic conditions is scarce.

Design: Thematic synthesis of qualitative studies.

Data sources: A systematic literature search in PubMed, CINAHL, LILACS, PsycINFO, Scopus, and Web of Science was performed supplemented by manual search strategies. Thirty-one studies from fifteen countries, published between 1981-2018, were included.

Findings: Findings were integrated into an analytical theme "FAMILY HOPE: KEEPING THE DAY-TO-DAY BALANCE", encompassing the following five descriptive themes: Uncertainty; Support; Information; Between "dark thoughts" and positive thoughts; and Hoping to go back to normality.

Conclusion: This thematic synthesis brings a new dimension of hope among families of children and adolescents living with chronic illness. "Family Hope" highlights the influence of the relationships between relatives and the chronically ill child in the balance of hope. It is recommended that health professionals use a family-focused approach to support these families.

Impact: Shifting the focus to a family dimension of hope is a promising pursuit that has the potential to inform future nursing practices to support the experiences of families living with chronic illness in the paediatric context. A better understanding of the role and characteristics of family hope will promote the development of more effective interventions for families to adapt to long-term paediatric conditions.

目的: 对关于儿童和青少年慢性病患者家庭的希望体验的定性研究进行总结。 背景: 希望是多维的、动态的,会随着经历的事件、文化环境和生活阶段的不同而变化。对儿科慢性病患者的希望体验的定性综合很少。 设计: 定性研究的专题总结。 资料来源: 对PubMed、CINAHL、LILACS、PsycINFO、Scopus以及科学网进行了系统性文献检索,并辅以人工检索策略。将1981年至2018年期间发表的来自15个国家的31项研究纳入其中。 发现: 将调查结果纳入分析主题“家庭希望:保持日常平衡”中,其中包括以下五个描述性主题:不确定性;支持;信息;在“黑暗想法”与“积极想法”之间;希望恢复正常。 结论: 此次专题总结为儿童和青少年慢性病患者家庭带去新的希望。“家庭希望”突出的是亲属与儿童慢性病患者之间的关系对希望平衡的影响。建议医护专业人员采用以家庭为重点的办法,对这些家庭提供支持。 影响: 将重点转向希望的家庭层面,是一项很有希望的工作,有可能为今后的护理实践提供更多信息,以便,在儿科环境下,为慢性病患者家庭的护理经验提供支持。更好地理解家庭希望的作用和特点,这将促进制定更有效的干预措施,使家庭适应长期的儿科护理状况。.

Keywords: adolescent; child; chronic disease; family nursing; hope; paediatric nursing; qualitative research; review.

Publication types

  • Review

MeSH terms

  • Adolescent
  • Child
  • Chronic Disease / psychology*
  • Family / psychology*
  • Hope*
  • Humans
  • Qualitative Research