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Cancer remains the second leading cause of death globally, with rising incidence rates each year. Home-based hospice care allows patients with terminal cancer to spend their final days at home, encompassing scheduled visits, 24-hour on-call support, and symptom management. Home-based hospice care is experiencing increasing demand and attention and family caregivers play a crucial role in home-based hospice care, handling daily care and emotional, logistical, and decision-making responsibilities. Despite the critical role families play, the literature remains underexplored in terms of their experiences, needs, and perceptions.
The overall aim of this study was to update and synthesize qualitative research on home-based hospice care based on the experiences of family caregivers of patients with cancer.
The three specific objectives for this review were as follows:
- To explore the experiences of families of patients with terminal cancer receiving home-based hospice care.
- To examine attitudes and perceptions of families toward home-based hospice care.
- To identify key needs within the context of home-based hospice care services.
Caregiving is deeply rooted in cultural and ethical values, often seen as a way to repay parents. Children and caregivers often feel responsible for their parents’ terminal illnesses at home, demonstrating their filial duty and ensuring their loved ones have a natural death and proper funeral.
Five full-text articles met the eligibility criteria for this meta-synthesis. These studies were published between 1989 and 2022, and the research was conducted across diverse geographical settings: Malaysia (n=1), Sweden (n=1), the United States (n=1), Taiwan (n=1), and Norway (n=1). Study settings included various palliative care environments, with sample sizes ranging from 12 to 44 participants, mostly between 12 and 19. All participants were family caregivers of individuals with advanced cancer receiving home-based palliative care, highlighting diversity in study aims and methods.
The analysis identified 5 overarching themes, synthesized into 2 central themes: (1) being physically and emotionally present, supported by subthemes of togetherness, family responsibility, and enduring presence; and (2) sharing responsibilities, supported by subthemes of formal and informal support.
Sense of Togetherness
A sense of togetherness plays a pivotal role in home-based hospice care, offering emotional security to both caregivers and patients. Being at home fosters feelings of safety, connection, and natural support. Caregivers expressed the importance of staying close to patients, whether physically or through tools like monitors, emphasizing their commitment to providing comfort and constant care. Home represents shared memories, love, and the life built together, making it a meaningful place for end-of-life care. Despite challenges, caregivers find significance in maintaining care at home, seeing it as an extension of their bond and dedication to the patient.
A Family Responsibility
Caregiving is seen as a moral and cultural obligation, particularly in contexts where filial duty is deeply valued. Children caregivers often view caring for terminally ill parents at home as a way to repay their parents and uphold cultural ethics, avoiding reliance on nursing homes. This commitment reflects a deep emotional significance and pride in fulfilling filial duties. Participants emphasized the importance of caregiving skills and ensuring a natural death at home for their loved ones, believing it demonstrates the value of filial piety and avoids regrets.
Be There Until the End
Families often face emotional challenges when discussing death or illness while striving to be present for their loved ones. In Sweden, some family members found talking about funerals burdensome but believed it helped their loved ones. Others chose to hide terminal diagnoses to protect hope. In Malaysia, caregivers expressed a desire to provide care while shielding loved ones from their own sadness, believing their emotions could impact their loved ones’ happiness. These experiences highlight the emotional complexity of providing compassionate care during end-of-life journeys.
Sharing Responsibilities
Sharing responsibilities in caregiving involves collaboration among patients, families, friends, palliative care teams, and community organizations. This approach reduces isolation for family caregivers managing terminal cancer patients. Support is crucial, with two key sources identified: palliative home-based care teams and assistance from others.
Formal Support
Palliative home care teams provide essential support, making caregiving more manageable, boosting caregiver confidence, and ensuring a dignified end-of-life experience. Caregivers value the reassurance and expertise of professionals, which helps alleviate stress and enables them to care for loved ones at home. This care fosters security, confidence, and meaningful final moments.
Informal Support
Family members, relatives, and friends play a crucial role in supporting caregivers providing care for patients with terminal cancer. Sharing responsibility with children is seen as an expression of filial piety. Financial responsibilities often require sharing with family members or government organizations. The emotional and physical toll of caregiving can be overwhelming, emphasizing the need for collective involvement, especially in the final stages of care, which can be particularly draining when borne alone.
The findings highlight the need for culturally sensitive interventions addressing caregiver support needs, bridging service gaps, and enhancing caregiving capacities. Integrated services, educational programs, and support groups focused on end-of-life communication can reduce caregiver isolation and improve emotional and practical support, significantly enriching their overall experience and effectiveness.
Source: Deng, X. M., Hounsri, K., Lopez, V., & Tam, W. W. S. (2025). Family Experiences, Needs, and Perceptions in Home-Based Hospice Care for Patients With Terminal Cancer: Meta-Synthesis and Systematic Review. JMIR cancer, 11, e71596.
