Unmet needs in young adults with a parent with chronic illness: a mixed method investigation and measure development study.

This is the peer reviewed version of the following article: Nicholls, W., Patterson, P., McDonald, F. E. J., & Hulbert-Williams, N. J. (2016). Unmet needs in young adults with a parent with a chronic condition: a mixed-method investigation and measure development study. Scandinavian Journal of Caring Sciences, 31(1), 191-200. doi: 10.1111/scs.12320 which has been published in final form at doi:10.1111/scs.12320. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-ArchivingRationale: Given the high number of young adults caring for a family member, and the potential for adverse psychosocial outcomes, there is a need for a screening tool, with clinical utility, to identify those most vulnerable to poor outcomes and to aid targeted interventions. Objectives: (i) To determine whether current knowledge from cancer literature regarding young carers is generalisable to chronic conditions and, therefore, whether an existing screening tool could be adapted for this population. (ii) To develop a measure of unmet needs in this population and conduct initial psychometric analysis. Design: This was mixed-methods: interviews in study one informed measure development in study two. Inclusion criteria were: having a parent with a chronic condition, and being aged 16-24 years. In study 1, an interpretative phenomenological analysis was conducted on interviews from seven young adults (age range 17-19 years). Study 2 explored factor structure, reliability and validity of the Offspring Chronic Illness Needs Inventory (OCINI). Participants were 73 females and 34 males (mean ages 18.22, SD = 1.16; 18.65, SD = 1.25). Main Outcome Measures: OCINI, Depression Anxiety and Stress Scale, and the Adult Carers Quality of Life Scale. Results: Interviews communicated that the impact of their parent’s condition went unacknowledged and resulted in psychosocial, support and informational needs. An exploratory principal axis analysis of the OCINI yielded five factors. Significant and positive correlations were found between unmet needs and stress, anxiety, and depression, and inversely with quality of life. Conclusions: The scale has applications in clinical settings where these young people, who are at risk of negative psychological outcomes, may be assessed and unmet needs targeted appropriately