A place for the child’s voice in children’s services

A place for the child’s voice in children’s services

Article Type: Editorial From: Journal of Children's Services, Volume 11, Issue 2.

Georgina Warner and Michael Little

Patient-reported outcome measures (PROMS) attempt to provide insight into the impact of health interventions from the perspective of the service user. As Norman et al.’s (2016) paper “A longitudinal study of Parent Reported Outcome Measures and a Parent Reported Experience Measure among British Child and Adolescent Mental Health Service attenders”, in this edition of the journal demonstrates, such measures are increasingly being used as part of the routine monitoring of children’s services.

So, why consider the views of the patient? There are many reasons (Black, 2013). For instance, several important outcomes for services are assessed from the patient’s perspective such as “quality of life”. Asking the patient directly avoids observer bias. Moreover, patients often welcome being involved. Importantly, routine monitoring of patients’ views can increase the accountability of service providers. The availability of widely used patient-reported outcome measures with normative data, such as the Strengths and Difficulties Questionnaire (Goodman, 1997), now allows for the “added value” of a service intervention to be assessed.

However, there are various interpretations of service “quality” (Black, 2013). Service effectiveness against the anticipated outcomes is, of course, important. Nevertheless, the patient experience should also be valued and, for some services, the level of safety is paramount. A key message from the Norman et al. paper is that these different aspects of service quality do not always align. Patients can report a positive service experience but demonstrate little improvement on primary outcomes, and vice versa. Such disparity could cast doubt on the appropriateness of the questions being asked but can also call the effectiveness of the service into question.

There are also potential detrimental side effects to integrating PROMS into service delivery. The time required to complete the outcome measures and the perceived irrelevance of some questions could result in the measures being viewed as burdensome by patients, and completion could even lead to increased anxiety (Wolpert, 2014). Similarly, the process could be viewed as burdensome by the professionals delivering the service. The introduction of PROMS is often accompanied by completion targets, which can add pressure to already busy service providers, and the integration of the measures into the service is not always well-considered (Wolpert, 2014). For instance, data analysis is not always timely enough for the service providers to reflect on the patient’s responses before the next session and, in some cases, the service users never get to hear what their scores mean or how they are used.

The integration of PROMS into children’s services presents further challenges. If service providers rely on the reports of parents, the possible disassociation between the views of the parent and the views of the child needs to be considered. This discord can occur at the point of referral (Yeh and Weisz, 2001), when recollecting events or agreeing upon desired outcomes (Garland et al., 2004). However, integrating the child’s voice into children’s services comes with its own challenges. The ethics of attaining child-reported outcomes needs to be considered. The purpose of the data collection, as well as any potential benefits or harm to the child, need to be clear. The age at which informed consent can be achieved is another important ethical factor, although parental consent would be required for children under 16 years – which could present logistical issues in itself. Child-reported outcome measures can also present methodological issues. For instance, child episodic memory is not fully established until at least seven years of age (Yim et al., 2013).

Despite these challenges, efforts should be made to listen to the children in receipt of services. The child’s voice can help us to understand the impact of children’s services and increase the accountability of those delivering services to children.

References

Black, N. (2013), “Patient reported outcome measures could help transform healthcare”, British Medical Journal (clinical research ed.), Vol. 346, p. f167

Garland, A.F., Lewczyk-Boxmeyer, C.M., Gabayan, E.N. and Hawley, K.M. (2004), “Multiple stakeholder agreement on desire d outcomes for adolescents’ mental health services”, Psychiatric Services, Vol. 55 No. 6, pp. 671-6

Goodman, R. (1997), “The strengths and difficulties questionnaire: a research note”, Journal of Child Psychology and Psychiatry, Vol. 38 No. 5, pp. 581-6

Norman, S.M., Ford, T., Henley, W. and Goodman, R. (2016), “A comparison of parent reported outcome with experience of services”, Journal of Children’s Services, Vol. 11 No. 2, pp. 157-69

Wolpert, M. (2014), “Uses and abuses of patient reported outcome measures (PROMs): potential iatrogenic impact of PROMs implementation and how it can be mitigated”, Administration and Policy in Mental Health and Mental Health Services Research, Vol. 41 No. 2, pp. 141-5

Yeh, M. and 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, Vol. 69 No. 6, pp. 1018-25

Yim, H., Dennis, S.J. and Sloutsky, V.M. (2013), “The development of episodic memory items, contexts, and relations”, Psychological Science, Vol. 24 No. 11, pp. 2163-72

Further reading

Tingskull, S., Svedin, C.G., Agnafors, S., Sydsjö, G., de Keyser, L. and Nilsson, D. (2015), “Parent and child agreement on experience of potential traumatic events”, Child Abuse Review, Vol. 24 No. 3, pp. 170-81