Parenting while dying: Hospital-based supportive care of parents with advanced cancer

Every year in Australia thousands of parents raising minor-aged children are dying from cancer. Parenting with incurable end-stage cancer (IESC) gives rise to unique multidimensional stressors that can greatly affect the psychosocial wellbeing of parents and their children. Research shows that parenting concerns are commonly experienced and can impact on healthcare decision-making. Surprisingly, however, parenting-related support needs are not routinely addressed as part of hospital-based healthcare services. This dissertation contributes the first Australian series of interconnected studies exploring hospital-based interdisciplinary service responses to patients’ and co-parents’ parenting support needs, offered as part of routine palliative cancer care. A mixed methods exploratory design comprising three sequential linked study phases underpinned the research project. The first phase entailed data mining the hospital medical records of 74 adult patients diagnosed with IESC (27–75 years, M = 47; 61% female; received hospital palliative cancer care between September 2013–December 2015) and parenting minor-aged children. Documented clinical, sociodemographic, psychosocial and hospital-based interdisciplinary parenting support response data were collected and analysed using descriptive statistics. Using qualitative methodologies, the second and third phase studies explored multidisciplinary health professional (HP) and parent perspectives on patient/co-parent parenting supportive care needs and experiences, and factors influencing hospital-based parenting supportive care utilisation and provision. Semi-structured interviews (1 focus group, 2 individual interviews) with 12 multidisciplinary HPs working at an Australian metropolitan general hospital (8 disciplines, M = 19.7 years of HP experience) were conducted in August 2017. Following, semi-structured interviews with 12 parents (8 patients, 4 co-parents) were conducted (October–December 2017). Each phase was analysed individually using thematic analysis. Individual findings from each phase were synthesised to explore overall project findings. Analysis revealed multidimensional parenting-related support needs were experienced by a diverse sociodemographic cohort of adult patients (aged 27–75 years old; 62% female). Parenthood was largely challenging—insights into the dynamic and unique nature of parenting concerns throughout the IESC phase were provided—from IESC diagnosis to bereavement. Support needs varied in nature and timing across the IESC treatment phase for individual families. The complex psychosocial context within which parenting occurred was indicated by the broad array of pressing psychosocial issues voiced. A tailored, patient-centred, family-focused, trauma-informed, interdisciplinary approach to hospital-based parenting support was deemed optimal. However, in practice it was not always achievable, resulting in parents experiencing unmet needs. Parents and HPs viewed multisystem factors as influencing parenting support provision and utilisation. Key facilitating factors were hospital-wide systemised parenting practice procedures (e.g., parenting status screening, needs assessments and interventions), adequate clinical resourcing, targeted HP training, collaborative communication, professional supervision and a child-friendly, culturally safe hospital environment. Multidimensional psychosocial factors including emotional and psychological readiness, personality, and beliefs about death and dying impacted on parents’ engagement with parenting-related support. Using these insights, multilevel system approaches for strengthening hospital-based parenting supportive care to parents facing IESC alongside treatment are discussed. Findings together with existing parental cancer research may assist hospital management and interdisciplinary HPs engaged in policy decisions and intervention delivery to develop and implement new initiatives targeting parenting-related psychosocial distress.