Open AccessSupporting Cancer Patients Who Are Also Parents: Establishment of a Cross-Sector Service for Families With Adolescent and Young Adult Children
Author(s) -
Pandora Patterson,
Peter Orchard,
John Friedsam,
Elena Schiena,
Sarah Ellis
Publication year - 2018
Publication title -
journal of global oncology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.002
H-Index - 17
ISSN - 2378-9506
DOI - 10.1200/jgo.18.96800
Subject(s) - psychosocial , medicine , referral , context (archaeology) , social work , distress , social support , service (business) , offspring , family medicine , nursing , psychiatry , psychology , clinical psychology , pregnancy , social psychology , genetics , economy , economics , biology , economic growth , paleontology
Background and context: Traditionally adult hospitals focus on the patient and less on their family. Adolescent and young adult children of cancer patients (AYA offspring) have significant psychosocial burdens associated with their parent's cancer however they are often invisible within hospitals with no clear referral pathways to community-based support. AYA offspring are 3-6 times more likely than peers to have clinically elevated levels of distress which increases with age. Research shows that 1 of the greatest concerns for parents is how to communicate about cancer with their children, and 1 of the greatest needs for AYA offspring is information about their parent's cancer and talking with their parents about it. Aim: CanTeen, a national AYA cancer community support organization, sought to address these needs by embedding a Parent Support Worker within the social work teams of tertiary hospitals for patients who are parents of AYA children. This service aims to assist with specific parenting challenges that arise due to a cancer diagnosis and establish a referral pathway for AYA offspring to CanTeen for support. Strategy/Tactics: Cofunding with philanthropic organizations was sought and CanTeen executives engaged in advocacy work with senior hospital management, demonstrating the need for the service and a plan to embed it within the existing hospital social work team and services. Program/Policy process: A new Parent Support Worker role was established to provide social work care to parents of AYA children following a parent's cancer diagnosis. The service provides support with parenting issues that arise due to the diagnosis as well as staff education, secondary consultations, and referrals of AYA offspring to CanTeen. A service improvement approach has been established with the collection of monitoring data measuring volume of referrals/sessions, capacity building of other staff, information given to young people and referrals to CanTeen. A service evaluation seeking feedback from patients and relevant hospital staff is also underway. Outcomes: To date, philanthropic funding and hospital support was gained to establish a pilot program placing a Parent Support Worker in 3 hospitals. Early indications are that this novel service is integrating well into established hospital teams and processes, and adding considerable value with the provision of this focused family support. What was learned: This advocacy initiative is highlighting the benefits of a model of care in adult hospitals that centrally considers family and the strength of a well-planned cross-sector service initiative.