Don’t Forget the Caregivers! A Discrete Choice Experiment Examining Caregiver Views of Integrated Youth Services

Lisa D. Hawke, Lehana Thabane, Leanne Wilkins, Steve Mathias, Srividya Iyer and Joanna Henderson ()
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Lisa D. Hawke: Centre for Addiction and Mental Health; University of Toronto
Lehana Thabane: McMaster University
Leanne Wilkins: Centre for Addiction and Mental Health
Steve Mathias: Foundry
Srividya Iyer: McGill University; ACCESS Open Minds (Youth Mental Health Services Research Network)
Joanna Henderson: Centre for Addiction and Mental Health; University of Toronto

The Patient: Patient-Centered Outcomes Research, 2021, vol. 14, issue 6, No 8, 802 pages

Abstract: Abstract Background The design and implementation of community-based integrated youth service hubs (IYSHs) is burgeoning around the world. This collaborative model of care aims to address barriers in youth service access by designing services that meet the needs of youth and caregivers. However, heterogeneity across models requires a better understanding of the preferences for key service characteristics. Method A discrete choice experiment was conducted among 274 caregivers of youth aged 14–29 years with mental health challenges. The experiment consisted of 12 attributes with four levels each, representing different service components; additional measures were collected, including demographics and burden assessments. Utility values were calculated, representing the degree of preference for a given level of an attribute. Latent class analysis was conducted to understand subgroups with different service preferences, identifying three latent classes with differing IYSH service preferences. Results The largest class (n = 173, 63.1%), entitled ‘Comprehensive, Integrative Service Access’, strongly valued practical aspects of service design, such as rapid access and support for a wide range of needs. The ‘Service Process Features’ class (n = 67, 24.5%) expressed a relative prioritization of process features of service access, while the smaller ‘Caregiver Involvement’ (n = 34, 12.4%) class most highly prioritized caregiver involvement in their youths’ services. Similar demographic characteristics and caregiver burden were found across classes, although participants in the Caregiver Involvement latent class were supporting younger youth. Discussion and Conclusions Caregivers have diverse youth service preferences and relative priorities that should be taken into account when designing services. System designers and service providers are encouraged to take caregivers’ preferences and priorities into account, alongside youth priorities, whether designing service delivery models or an individual service plan for a youth.

Date: 2021
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DOI: 10.1007/s40271-021-00510-6

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