The unmet needs of siblings of children with whaikaha/disabilities in Aotearoa/New Zealand : a thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Psychology at Massey University, Manawatū, Aotearoa New Zealand
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Date
2024
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Massey University
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Abstract
Siblings of children with whaikaha/disability live a life of constant disruption and challenge, due to their siblings needs. International research indicates that there is a small but significant group of siblings experiencing psychological distress; in Aotearoa/New Zealand, there is very little mental health support available for these siblings. This research aims to identify the unmet needs siblings of children with autism spectrum disorder (ASD), Down syndrome (DS) and cerebral palsy (CP) in Aotearoa/New Zealand. By identifying these needs, we can then inform future development of support services that are targeted towards improving the health and wellbeing of these siblings. This survey is informed by an insider perspective and replicates previous research which used a mixed method online survey design, with a modified version of the Sibling Cancer Needs Instrument and a qualitative exploratory question. A modified version of the Zarit Burden Interview was also included in the current study. Ninety-seven participants took part in the survey across three disabilities (ASD n = 55, DS n = 39, CP n = 11). ASD siblings had the highest percentage of unmet needs (69.9%) followed by DS (41.9%) and lastly CP (42.9%). When comparing these disabilities, it was found that there was a significant difference between ASD and DS, between males and females and between one to two siblings and more than three siblings. The thematic analysis in the current study identified ‘taha hinengaro’ (mental, emotional health) as the area where siblings need the greatest level of support. It was also found that ASD siblings were the only siblings to report being physically and emotionally harmed by their sibling and caregiving was primarily mentioned by female siblings. The domain with the highest number of unmet needs for siblings of children with whaikaha/disabilities was ‘support from friends and other young people’. Our results support previous studies and indicates that both siblings of children with cancer and serious chronic health conditions and siblings of children with disabilities could be supported together. Given that the needs of siblings have been identified along with how these needs can be met, further focus and research is needed on the impact of providing support to siblings.