Integration of child life into adult oncology: A mixed-methods feasibility study.

BACKGROUND: Cancer in a loved one can have negative effects on child health and development. Child Life Specialists (CLSs) specialize in assisting children understand and cope with difficult medical scenarios but are generally not available in adult care facilities to support the needs of patient-families with minor children. We conducted a mixed-methods study of the implementation of a pilot CLS program at a tertiary oncology centre. METHODS: We collected administrative and clinical data on referred families; encounter data; and patient-reported questionnaire data before and 2 months after engagement with the program. RESULTS: Over the initial 10 months, 98 families were referred, 91 of whom engaged through a total of 257 clinical encounters. The cancer patient in the family was most commonly a woman with a mean age of 45 years and in the role of mother. Breast cancer was the most common diagnosis (24%) and 78% of patients had stage IV disease. Most families had >1 child at home, and children were most commonly school-aged (5-14y). Phone and Hospital/Clinic visits accounted for the largest portion of CLS time. Interventions ranged from diagnosis education through to bereavement support. Most cancer patients indicated that the program was helpful to them and their families. There were trends of moderate improvements on patient reported outcomes. CONCLUSION: Our study was able to provide an understanding of the initial CLS program operations to guide program development and future study. Such a program holds promise as an important aspect of adult oncology family-centered care.

"There's So Much More Support We Could Have Provided": Child Life Specialists' Stories of the Challenges Working in Adult Oncology.

A cancer diagnosis in patients who are parents of minor children is uniquely stressful for both parents and children. Children need developmentally appropriate information and support to help reduce their fears and worries. Child life specialists (CLSs) are health professionals who work in pediatric environments to support children and families with the stress and uncertainty of illnesses. Increasingly, CLSs have been called upon to support children of patients in adult clinical environments. Our objective was to elucidate CLS caregiving narratives related to working with children of adult cancer patients. We used narrative inquiry to interview four CLSs working in adult oncology. Canadian CLSs who have experience providing care for children and families affected by parental cancer were recruited via convenience sampling. We used narrative analysis methods that included multiple close reads of the data, generating narrative themes, and noting conflicts or tensions in the data. CLSs' caregiving stories often highlighted the complexities of working in an adult oncology environment. Their narratives included challenges in providing optimal care to the children, including family-level barriers (such as parental wishes to withhold information from their children) and systemic barriers (such as late referrals and limited options for bereavement support). CLS participants identified several challenges of working with families in adult oncology. The CLSs highlighted a desire for additional institutional support for children of adult oncology patients and for themselves working in these environments in order to achieve what they believed to be optimal care.

Children's Health Care Utilization and Cost in the Last Year of Life: A Cohort Comparison with and without Regional Specialist Pediatric Palliative Care.

Background: Research remains inconclusive regarding the impact of specialist pediatric palliative care (SPPC) on health care utilization and cost. Objective: To better understand and quantify the impact of regional SPPC services on children's health care utilization and cost near end of life. Design: A retrospective cohort study used administrative databases to compare outcomes for child decedents (age 31 days to 19 years) from two similar regions in Ontario, Canada between 2010 and 2014, wherein one region had SPPC services (SPPC+) and the other did not (SPPC-). Measurements: Administrative databases provided demographics, health care utilization (days), and costs Canadian dollars) across settings in the last year of life, and location of death. Multivariable analyses produced relative rates (RRs) of health care days (acute and home care), intensive care unit (ICU) days, and health care costs (inpatient, outpatient, home, and physician) as well as the odds ratio (OR) of in-hospital death. Counterfactual analysis quantified the differences in utilization and costs. Results: A total of 807 children were included. On multivariable analysis, residence in the SPPC+ region (n = 363) was associated with fewer mean health care days (RR = 0.73; 95% confidence interval [CI]: 0.59-0.90); fewer mean ICU days (RR = 0.64; 95% CI: 0.44-0.94); lower mean health care costs (RR = 0.71; 95% CI: 0.56-0.91); and lower likelihood of in-hospital death (OR = 0.67; 95% CI: 0.49-0.92). The counterfactual analysis estimated mean reductions of 16.2 days (95% CI: 14.4-18.0) and $24,940 (95% CI: $21,703-$28,177) per child in the SPPC+ region. Conclusions: Although not a causal study, these results support an association between regional SPPC services and decreased health care utilization, intensity, and cost for children near end of life.