Aim To identify spiritual and religious needs of adolescent oncology patients and their families with the intention of providing an evidence base for appropriate spiritual and religious care interventions to be developed in a future study.
Methods Small scale phenomenological study, 9 patients, 7 parents, semi-structured interviews with initial approach made by the lead nurse, 2 staff focus groups, thematic analysis of data by multidisciplinary team and tested out with staff in a focus group. A systematic literature review demonstrated the lack of research in this field.
Results Spiritual needs were clustered under the following headings: protection vs autonomy; desire to make a difference; personal issues including loss, privacy, finding a new normal; relationships and attitude including the need to be listened to and opportuniites for empowerment and consent where they could have control; environment including a need for conducive physical and emotional space and a focus on building community; difficult emotions and resilience; need for supportive presence; cultural differences. Religious needs were ritual; hope; questioning and doubt; worldview; language; balance between parent and patient’s needs. Inverted transition was noted as an issue to explore further.
Conclusion Practice implications include; need for ongoing assessment and appropriate assessment strategies; articulating spiritual care practices and opportunities; offering normalising activities; importance of culture setting, building community and enhancing the environment; providing space for parents to express emotion and loss; self care for staff; education on religious beliefs and impact on care. A process of inverted transition was noted where young people who would usually be becoming more independent were thrust back towards a dependence on their parents who were often very present on the wards. Perhaps the most valuable thing that can be offered to patients and their families are acts of kindness and remembrance, such acts were disproportionately appreciated in relation to the act.
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