Experience of hope in adults with advanced chronic diseases other than cancer: a qualitative systematic review

OBJECTIVE: This systematic review evaluates the experience of hope in adults with advanced chronic diseases other than cancer. INTRODUCTION: The experience of living with advanced chronic disease extends beyond the individual, influencing daily life on multiple levels. Hope holds undeniable significance in the lives of individuals, particularly for those contending with advanced chronic disease. Hope is a vital resource in this journey, yet there is a notable absence of clear recommendations for health care professionals on how to support and foster it. ELIGIBILITY CRITERIA: This review includes qualitative studies that focus on experiences of hope in adults with advanced chronic diseases other than cancer and/or informal caregivers. Studies with children as patients or parents as caregivers were excluded. METHODS: Embase.com, MEDLINE (Ovid), CINAHL (EBSCOhost), APA PsycINFO (Ovid), Web of Science, ProQuest Dissertations and Theses A&I, DART-Europe, and Google Scholar were searched for published and unpublished studies in English, French, and Portuguese. The search was conducted without date restrictions. Articles were assessed using the standard JBI Critical Appraisal Checklist for Qualitative Research. Data were extracted using the JBI data extraction tool. The extracted findings were pooled using the JBI meta-aggregation approach. Study selection, quality appraisal, and data extraction were performed by 2 independent reviewers. The confidence level of each synthesized finding was determined using the ConQual approach. RESULTS: Eleven qualitative studies were included in this review (2 initially included studies did not meet the critical appraisal threshold and were excluded): 9 peer-reviewed journal articles and 2 doctoral dissertations, published between 2000 and 2021. The methodological quality of the included studies varied considerably. These studies collectively involved 138 patients and 10 informal caregivers. The meta-aggregation of data produced 4 synthesized findings, drawn from 13 categories and 128 findings. Adults with advanced chronic disease view hope as a personal, multifaceted psychological resource that is positive and future oriented. These patients experience hope through physical, psychological, and mental difficulties; feelings of hopelessness; and isolation. Individuals emphasize the importance of diverse sources of hope, including relationships, spiritual beliefs, and personal strengths, to navigate their challenges and find meaning. Expressions of hope by these patients demonstrate resilience and acceptance, emphasizing the importance of adapting to change and cherishing the present moment. CONCLUSIONS: This systematic review suggests that the experience of hope for adults with advanced chronic disease is dynamic, multifaceted, and highly individualized. This population encounters numerous challenges over time, including psychological and mental health difficulties, feelings of hopelessness, and isolation. Despite these difficulties, hope as a fundamental psychological resource can significantly enhance their quality of life and overall well-being. Health care professionals should adopt a holistic and dynamic care approach that recognizes and nurtures the multifaceted nature of hope. Access to spiritual care services or care providers should be integrated into the care plans, in recognition that spiritual beliefs are a significant source of hope for many patients and informal caregivers. REVIEW REGISTRATION: PROSPERO CRD42021266487.