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Unmet needs in young adults with a parent with a chronic condition: a mixed-method investigation and measure
Wendy Nicholls1, Pandora Patterson2, Fiona E J McDonald2
1Institute of Psychology, University of Wolverhampton, Wolverhampton, UK.
Insights
Young adults caring for chronically ill parents experience unmet needs, impacting mental health. A new scale, the Offspring Chronic Illness Needs Inventory (OCINI), helps identify these needs for targeted support.
Area of Science:
- Psychology
- Public Health
- Sociology
Background:
- Young adults caring for family members with chronic conditions face significant psychosocial risks.
- Existing screening tools may not adequately address the unique needs of this population.
- There is a need for validated measures to identify vulnerable young carers for intervention.
Purpose of the Study:
- To assess the generalizability of cancer literature findings on young carers to those with chronic conditions.
- To develop and psychometrically analyze a new screening tool measuring unmet needs in young carers of parents with chronic illnesses.
- To evaluate the potential for adapting existing screening tools for this demographic.
Main Methods:
- Mixed-methods approach combining qualitative interviews and quantitative surveys.
- Interpretative phenomenological analysis of interviews with seven young adults (17-19 years).
- Development and psychometric evaluation (factor structure, reliability, validity) of the Offspring Chronic Illness Needs Inventory (OCINI) with 107 participants (aged 16-24).
Main Results:
- Qualitative data revealed unacknowledged psychosocial, support, and informational needs among young carers.
- Exploratory factor analysis identified five key factors within the OCINI.
- Significant positive correlations were observed between unmet needs and increased stress, anxiety, and depression.
- A significant inverse correlation was found between unmet needs and quality of life.
Conclusions:
- The Offspring Chronic Illness Needs Inventory (OCINI) is a psychometrically sound tool for assessing young carers.
- The OCINI can be utilized in clinical settings to identify young individuals at risk of adverse psychological outcomes.
- Targeted interventions can be developed based on the assessed unmet needs, improving outcomes for young carers.
Rationale:
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 method; interviews in study one informed measure development in study two. Inclusion criteria were as follows: 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.
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