Accommodation in pediatric oncology: parental experiences, preferences and unmet needs.

INTRODUCTION: For families of children diagnosed with cancer, proximity to the treatment center and staying close to immediate family members are essential for proper patient management. Accommodation services are therefore a key consideration in pediatric oncology. This descriptive study explored the accommodation used, and preferred, by parents of pediatric cancer patients at Sydney Children's Hospital, Randwick (SCH), Australia, and investigated their accommodation and practical needs.
METHODS: Forty-two parents from 25 families participated in individual semi-structured telephone interviews. Interviews were recorded, transcribed verbatim and coded line-by-line. Coding was facilitated by data analysis software QSR NVivo v8 (www.qsrinternational.com). Emergent themes were numerically assessed to minimize the potential for researcher bias.
RESULTS: Nine families (36%) lived near SCH and were able to stay at their own residence during treatment (mean distance of 15.4 km from SCH). The remaining families were categorized 'local, but requiring accommodation' (n=3 families represented by five parent interviews; mean distance of 82.22 km from SCH),'inner regional' (IR) (n=8 families, 15 parent interviews; mean distance of 396.75 km from SCH) or 'outer regional' (OR) (n=3 families, 5 interviews; mean distance of 547.4 km from SCH) according to the Australian Standard Geographical Classification (ASGC) remoteness ratings. Accommodation provided for families from both IR and OR areas was mixed, with several families using multiple accommodation options during treatment, including Ronald Macdonald House (RMH), private accommodation or a rental property close to the hospital for the duration of the treatment. Six IR and one OR family utilized hotel or motel accommodation as an alternative to RMH due to unavailability of rooms. The majority of parents (37/42) preferred to stay on the hospital campus, near their child. Seven out of 11 IR and OR mothers preferred self-contained accommodation, while three out of nine IR and OR fathers preferred accommodation shared with other parents (ie communal). Difficulties with booking accommodation were a clear source of stress for IR and OR families, and despite subsidies, accommodation and travel caused a heavy financial burden. All IR and OR families (n=11) paid a minimum of $200 travel costs per trip to the hospital (with a maximum of $600 per person per trip). Despite this cost, only four IR (50%) and two OR (66.7%) families reported receiving financial aid for travel.
CONCLUSIONS: With a large percentage of families travelling long distances for treatment at SCH, it is important to assess their accommodation needs and experiences. Although parents positively appraised the accommodation options they utilized, they also provided useful suggestions for enhancing the experiences of future families. There is a clear need for greater access to accommodation specifically tailored to suit the needs or preferences of families from rural and remote locations.