Power Up for Parents: A pilot study to enhance Shared Decision-Making in CAMH

Shaun Liverpool
Shaun is a PhD Student from the Anna Freud Centre, National Centre for Children and Families. Disclaimer: This is an independent blog and ACAMH may not necessarily hold the same views.

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Why is this research important?
Worldwide, up to 20% of children and young people (CYP) suffer from a disabling mental disorder (World Health Organization, 2000, 2003). In England alone, 12.8% of 5 to 19-year-olds have at least one mental health disorder (Government Statistical Service, 2017). As a result, families are faced with many decisions, such as; how, when and where to seek help (Wolpert et al., 2016); agreeing on treatment options (Ahmed et al., 2017); agreeing on the goals of treatment (Bradley, Murphy, Fugard, Nolas, & Law, 2013) and agreeing on diagnostic tests (Berger et al., 2017). However, making decisions for CYP with mental health problems can be challenging, as evidenced by the high levels of disagreement between parents, CYP and clinicians (Simmons, Hetrick, & Jorm, 2011, 2013; Yeh & Weisz, 2001). Researchers and practitioners suggest that the implementation of shared decision-making (SDM) in children and adolescent mental health (CAMH) settings can be one approach to reduce treatment disagreements (Laitner, 2012) and successfully manage the decision-making process that involves balancing multiple perspectives (Wolpert, 2012). The lack of parents’ involvement in CAMH can lead to higher rates of dropout and lower adherence to therapeutic interventions (Noser & Bickman, 2000). There are significant benefits to be gained globally if SDM interventions are adopted by parents and shown to be successful in CAMH settings.

What are the aims of this study?
This a pilot study to determine the feasibility of a large-scale cluster randomised trial. The author aims to develop and test the feasibility of a web application (called Power Up for Parents or PUfP) to support parents and promote their involvement in CAMH decisions.

How will this be done?
A two-stage process, consisting of (i) the development stage and (ii) pilot testing stage of the initial PUfP prototype, is being conducted. At the development stage, a qualitative study, with parents and clinicians, is ongoing. The interviews aim to capture the experience of making CAMH decisions, preferences for involvement in SDM, and to determine scenarios within which PUfP can be useful. At the second, pilot testing stage, parents are invited to participate in the testing of the prototype. Parents are randomly allocated to receive the intervention or be part of the control group.
This study design allows the study team to assess the acceptability and usefulness of PUfP, in addition to examining the feasibility of a prospective randomised trial. Clinicians’ perceptions of the PUfP prototype and how it can influence parents’ involvement in SDM is also being examined.

How to get involved?
Recruitment began in January 2019 and is scheduled to last for ten months.
Parents or carers must be:
o Over 18 years old;
o Primary caregivers of a child or young person (up to 24 years) with mental health challenges;
o Comfortable speaking and understanding English;
o Able to have access to a computer, phone or tablet with internet access.

Parents or carers seeking more information on this study or wishing to be part of the study can do so here or by contacting the author at the contact details below.
Clinicians (including trainees) are welcome to contact us to be part of the study, or to obtain resources to help promote the study.

Contact details:
Name: Shaun Liverpool | Email: shaun.liverpool@annafreud.org

Conflict of interest
The author declares that there is no conflict of interest. The data collected in this study will contribute towards his PhD project. The views expressed here are those of the author and do not necessarily reflect those of the Association for Child and Adolescent Mental Health.
This study has been ethically approved by the University College London and should not be confused with the study being conducted within the NHS.

How is this study funded?
This research is being sponsored by TEAM, an innovative training network, funded by the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No. 722561

Works cited:
Ahmed, R., McCaffery, K. J., Silove, N., Butow, P., Clarke, S., Kohn, M., & Aslani, P. (2017). The evaluation of a question prompt list for attention-deficit/hyperactivity disorder in pediatric care: A pilot study. Research in Social and Administrative Pharmacy, 13(1), 172-186. doi:10.1016/j.sapharm.2016.01.009

Berger, Z. D., Brito, J. P., Ospina, N. S., Kannan, S., Hinson, J. S., Hess, E. P., . . . Newman-Toker, D. E. (2017). Patient centred diagnosis: sharing diagnostic decisions with patients in clinical practice. BMJ, 359. doi:10.1136/bmj.j4218

Bradley, J., Murphy, S., Fugard, A., Nolas, S., & Law, D. (2013). What kinds of goals do children and young people set for themselves in therapy? Developing a goals framework using CORC data. Child & Family Clinical Psychology Review, 1(1), 8-18.

Government Statistical Service. (2017). Mental Health of Children and Young People in England. Retrieved from NHS Digital: https://digital.nhs.uk/data-and-information/publications/statistical/mental-health-of-children-and-young-people-in-england/2017/2017

Laitner, S. (2012, 3rd October). Shared decision making leads to a better patient experience. The Guardian.

Noser, K., & Bickman, L. (2000). Quality Indicators of Children’s Mental Health Services: Do They Predict Improved Client Outcomes? Journal of Emotional and Behavioral Disorders, 8(1), 9-18. doi:10.1177/106342660000800102

Simmons, M. B., Hetrick, S. E., & Jorm, A. F. (2011). Experiences of treatment decision making for young people diagnosed with depressive disorders: a qualitative study in primary care and specialist mental health settings. Bmc Psychiatry, 11, 13. doi:10.1186/1471-244x-11-194

Simmons, M. B., Hetrick, S. E., & Jorm, A. F. (2013). Making decisions about treatment for young people diagnosed with depressive disorders: a qualitative study of clinicians’ experiences. Bmc Psychiatry, 13, 16. doi:10.1186/1471-244x-13-335

Wolpert, M., Harris, R., Hodges, S., Fuggle, P., James, R., Wiener, A., . . . Munk, S. (2016). Thrive Elaborated. Retrieved from: https://www.annafreud.org/media/4817/thrive-elaborated-2nd-edition.pdf

Wolpert, M., Hoffman, J., Abrines, N., Feltham, A., Baird, L., Law, D., . . . Hopkins, K. (2012). Closing the gap through changing relationships. Final report for closing the gap through changing relationships. London: The Health Foundation.

World Health Organization. (2000). The World Health Report (A53/4). Retrieved from: https://www.who.int/whr/2013/report/en/

World Health Organization. (2003). Caring for children and adolescents with mental disorders: Setting WHO directions. Retrieved from : https://www.who.int/mental_health/media/en/785.pdf

Yeh, M., & Weisz, J. R. (2001). Why Are We Here at the Clinic? Parent–Child (Dis)Agreement on Referral Problems at Outpatient Treatment Entry. Journal of Consulting and Clinical Psychology, 69(6), 1018-1025. doi:10.1037/0022-006X.69.6.1018

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