The unmet needs of siblings of children with cancer and serious chronic health conditions in Aōtearoa/New Zealand : a thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Psychology at Massey University, Palmerston North, Aōtearoa/New Zealand

Abstract

There is evidence to suggest a subset of siblings of children with serious chronic health conditions have a range of unmet psychosocial needs which can lead to adjustment difficulties and mental health problems. A review of needs-based support services available to siblings in Aōtearoa/New Zealand found this is an under-serviced area. The current research aimed to identify the unmet needs of siblings of children with cancer and serious chronic health conditions and contribute to the development of targeted support services that protect and promote health and wellbeing in siblings. An online survey design was used to identify the unmet needs of siblings of children with cancer, cystic fibrosis, and Type 1 diabetes mellitus. The final sample included 204 respondents across the three health conditions (cancer: n=84, cystic fibrosis: n=47, diabetes: n=73). Quantitative results show the average percentage of unmet needs for the total sample was very high (57.8%). Of the three health conditions, cancer had the highest average percentage of unmet needs (66.3%), followed by cystic fibrosis (53.0%), then Type 1 diabetes mellitus (48.6%). Of the seven domains ‘Information about my sibling/whānau member’s health condition’ had the highest number of unmet needs. A significant difference was found between the total mean percentage scores between males and females (p=.001). A comparison of siblings in the ‘cancer’ health condition with an Australian study found the domains were strongly correlated but the New Zealand sample was systematically higher. The qualitative results showed siblings were affected negatively (and potentially long- term) from: a lack of information; feeling ‘invisible’ and forgotten; feeling guilty for being the ‘healthy’ sibling; suppression of needs; disruption to the family; a lack of peer and familial support; and additional care-giving roles. The impacts of these issues can lead to depression, anxiety, post-traumatic stress symptoms and affect beliefs around self-worth. Recommendations arising from these findings point to the need for effective support for siblings including: information about their sibling’s health condition; professional support offered to them; support and understanding from peers, family and teachers; time with parents to feel valued and included; guidance on how to support their affected sibling; a safe space where they feel validated and can speak freely; and ‘time out’ with other siblings.