Although spiritual pain in cancer patients has been extensively studied, little is known about the spiritual pain experienced by bereaved caregivers in Japan.

This preliminary scale development aimed to clarify the structure of spiritual pain experienced by bereaved caregivers of cancer patients.

This preliminary scale development was conducted as a secondary analysis of the nationwide J-HOPE4 survey, a cross-sectional questionnaire study of bereaved family members of cancer patients. Thirty-five items related to spiritual pain were analyzed using exploratory factor analysis (EFA).

Responses were obtained from 930 bereaved caregivers in general hospitals and palliative care units. Seven constructs were obtained through the EFA: Loneliness, Life’s heartlessness, A sense of unfinished business, Distress over patient deterioration, Remorse, Regret, and A sense of loss.

This preliminary scale development provides insights into the structure of spiritual pain experienced by bereaved caregivers of cancer patients. Further validation using independent samples is required.

Seven factors of spiritual pain were identified among bereaved caregivers of cancer patients, and understanding this multidimensional experience may inform supportive care.

This study aimed to explore the end-of-life decision-making experiences of bereaved family caregivers of Alzheimer’s disease (AD) patients, focusing on do-not-resuscitate orders. Given the high emotional and ethical burden on caregivers, understanding their challenges and needs is crucial to enhancing palliative care for AD patients.

A qualitative, exploratory study was conducted using semi-structured interviews with 22 family caregivers recruited through purposive sampling in central Taiwan. Participants were primary caregivers for AD patients who had been bedridden for at least a year before death. Analysis employed inductive thematic coding to identify key themes, with rigor ensured through multiple coding, member checking, and reflective journaling.

Three major themes emerged: (1) Decision-making difficulties, where caregivers felt pressure and conflict when making urgent decisions; (2) Willingness to let go, which involved accepting the inevitability of death when recovery was no longer possible; and (3) Embracing the consequences of the decision, reflecting caregivers’ sense of relief and acceptance post-decision. Cultural factors, such as filial piety, were found to influence decision-making processes, often intensifying emotional conflicts.

Findings underscore the importance of early, culturally sensitive discussions around end-of-life care in palliative settings for AD patients. Healthcare providers are encouraged to initiate these discussions, offering clear explanations and emotional support to assist caregivers through decision-making. This study highlights the need for a family-centered approach that respects cultural nuances, helping to reduce caregiver stress and enhance the quality of palliative care in AD contexts.

Patients in their last year of life, as well as their relatives, often feel that existent care structures of the healthcare system do not adequately address their individual needs and challenges. This study analyzes unmet needs in terms of unsolved problems and unwanted decision-making in the health and social care of patients in their last year of life from the perspective of bereaved caregivers.

This qualitative study is based on free-text comments from informal caregivers of deceased patients collected as part of the Last-Year-of-Life-Study-Cologne (LYOL-C) using a postal survey. With qualitative content analysis, a category system with main and subcategories was developed in a multi-step process.

Free-text commentaries and demographic data were collected from 240 bereaved caregivers. Particularly outside of hospice and palliative care services, study participants addressed the following unsolved problems: poor communication with medical and nursing staff, insufficient professional support for informal caregivers, inadequate psycho-social support for patients, and poor management of pain and other symptoms. Respondents often stated that their relative had to be cared for and die outside their own home, which the relative did not want.

Our findings suggest the necessity for greater awareness of patients’ and their relatives’ needs in the last year of life. Addressing individual needs, integrating palliative and hospice care in acute hospitals and other healthcare structures, and identifying patients in their last year of life and their caregivers could help to achieve more targeted interventions and optimization of care.