We are delighted to continue the Academic Express section, which aims to facilitate academic exchanges and further the development of oncology nursing. In every issue, we present ground-breaking research contributions from esteemed members in the field.
In this issue, we are privileged to feature a transformative study led by Associate Professor Bruno Magalhães from the University of Trás-os-Montes and Alto Douro (UTAD), Portugal. His phenomenological research, "Bridging the Care Divide: Family Caregivers' Journeys in Palliative Transition and Imperatives for Oncology Nursing", illuminates the complex realities of transitioning palliative care from hospital to home settings through the lens of family caregivers.
We are deeply honored to contribute to the International Society of Nurses in Cancer Care (ISNCC) website by sharing insights from our recent phenomenological study: "Family perceptions of the transition from hospital to home palliative care." Given that cancer was the predominant diagnosis among the patients whose families participated in our research, our findings hold critical relevance for oncology nursing practice globally.
The study, conducted in Portugal, aimed to explore the profound lived experiences of family caregivers as they navigate the critical shift of palliative care responsibility from the structured hospital environment to the intimacy and complexity of home.
The Essence of the Caregiving Experience
Our analysis revealed that this transition is characterized by a mix of profound moral commitment and systemic fragility. Caring is primarily driven by love, duty, and reciprocity. However, this commitment coexists with intense feelings of helplessness, exhaustion, and deep insecurity due to the inevitability of disease progression.
Three essential themes emerged from the caregivers’ narratives: Emotional and Relational Experience of the Family Member, Family’s Challenges and Adaptation, and Support for the Family.
A particularly salient finding was the tension between the family’s dedication and their profound sense of being unprepared. Caregivers often felt abruptly responsible for complex tasks—such as mobilizing, hygiene, or administering medication—without prior formal training or clear guidance from the institutions. The lack of technical knowledge was a significant source of stress, leading families to resort to "self-directed learning" (trial and error or searching the internet) to manage daily care.
Critical Implications for Oncology Nursing Worldwide
These experiences highlight concrete areas where oncology nurses can act as crucial agents in supporting families during the end-of-life continuum:
1.Mandate Structured Transition Programs: Nurses must implement formalized, practical training programs before hospital discharge. These programs should include supervised sessions on specific technical tasks (e.g., symptom management, mobility techniques) to boost caregiver confidence and reduce anxiety about "doing something wrong".
2. Prioritize Emotional and Psychological Support: Recognizing the high levels of burden, stress, and anticipatory grief reported by caregivers is essential. Oncology nurses must proactively identify signs of exhaustion (burnout) and facilitate timely access to emotional support strategies, such as psychological counseling or support groups.
3. Ensure Seamless Continuity of Care: The contrast between continuous hospital support and limited home resources causes immense insecurity. The presence and responsiveness of community palliative care teams (PCHSTs) emerged as a critical factor for family safety and validation. Nurses must advocate for, and ensure, clear and coordinated referral pathways to strengthen community support structures.
In conclusion, our study confirms the urgent need to recognize the family as the unit of care. By investing in caregiver empowerment, continuous support, and coordinated systems, oncology nurses can ensure that the transition to home palliative care is safe, sustainable, and truly compassionate for both the person with cancer and their devoted family.
References:
Cruz, S., Magalhães, B., & Fernandes, C. (2025). Family perceptions of the transition from hospital to home palliative care: a phenomenological study. Supportive care in cancer: official journal of the Multinational Association of Supportive Care in Cancer, 33(11), 1014. https://doi.org/10.1007/s00520-025-10069-9
Associate Professor Bruno Magalhães
PhD, DNSc, MPH, CMSRN, RN
