Are the voices of young people living in out-of-home care represented in research examining their health?: A systematic review of the literature

Abstract

There are strong imperatives for young people living in out-of-home care (OoHC) to exercise their right to participate in health-related decision making and health care practices to foster better health outcomes. This systematic review aimed to explore if and how the voices of young people in OoHC are represented in research examining their health. Studies published in the prior 15 years that examined the health needs and/or health status of young people living in OoHC were included. A total of 39 studies met the inclusion criteria. Of these, only three studies involved directly interviewing young people about their perspectives on what health means to them. The remaining studies relied on carers’ reports or self-report questionnaires that primarily examined prevalence of specific mental illnesses or other health conditions. This review showed that the voices of young people in OoHC have been underrepresented in research examining their health and health care needs. The adoption of new research designs to better incorporate young people’s perspectives of health matters appears warranted to better explore the unique health needs of this population.

Introduction

Giving a voice to children about their health and healthcare involves adults finding new ways to elicit and understand children’s experiences, opinions, concerns, questions and preferences (Lansdown, 2011). It has been 30 years since the United Nations Committee on the Rights of the Child (UNCRC, 1989) articulated children’s right to express their views about all matters that concerned their lives and to participate in decisions affecting them. However, enacting those rights in relation to children’s health and healthcare has been an ongoing challenge for health professionals and health researchers (Ford et al., 2018, Katz and Webb, 2016, Montreuil and Carnevale, 2016). The right to be heard described in Article 12 (UNCRC, 1989) represents one of four general principles of the Convention and is intrinsically linked to all other Articles.

In its General Comment on the right of children to be heard, the United Nations Committee on the Rights of the Child (1989) specifically addressed the need to ensure respect for children’s voice in health matters and identified distinct health-related issues for consideration. Such issues included ensuring opportunities for involvement consistent with children’s developing capacities, providing children with information about proposed treatments, effects and outcomes, and ensuring access to confidential medical counselling without requiring parental consent, regardless of the child’s age (UNCRC, 1989). Further issues for consideration included providing clear information for children about their rights around participation in paediatric research and clinical trials to support informed consent, seeking children’s views about their health service needs (i.e., including how and where these are best provided and children’s experiences of interactions with health professionals), and promoting children’s capacities to take increasing levels of responsibility for their own health and development. The Committee also identified distinct issues in ensuring children living in out-of-home care (OoHC), away from their parents, are enabled to express their views about their care, including any treatment plans (UNCRC, 1989).

Aside from the ethical and moral rights perspective, there are four practical reasons for increasing children’s participation in health decision making. Firstly, age appropriate sharing of knowledge about healthcare risk/benefits can improve children’s understanding and willingness to consent to treatment (Scherer, 2018). Children who were more actively engaged in health decision making through research studies felt a greater sense of self-efficacy and of being treated fairly (Scherer, 2018). Health-related self-efficacy has been positively associated with greater adherence to treatment, a stronger sense of control (Ford et al., 2018), greater satisfaction with health care (Miller, Feudtner, & Jawad, 2017), and a higher health-related quality of life (Gonzalez-Conde, Perez-Fernandez, Ruiz-Esteban, & Valverde-Molina, 2019). Further, self-efficacy in areas like pain management is a key factor in child resilience (Stahlschmidt, Hubner-Mohler, Dogan, & Wager, 2019). Self-efficacy can also be a significant predictor of treatment success, such as in treating functional constipation in children (Santucci et al., 2019).

Secondly, active, ongoing participation in everyday medical decision making helps children develop skills that prepare them for adult decision making (Taylor & Marshall, 2018). Clinicians have an important role to teach children to master medical decision making through talking about factors that influence decisions, encouraging careful thought and effort, acknowledging and countering power and dependency issues, providing information, discussing options, referring children for other opinions and promoting the use of decision making tools such as listing pros and cons (Taylor & Marshall, 2018). Thirdly, listening to children and having a positive regard for their participation in decision making contributes to children’s personal development, can protect children and can strengthen accountability to children (Ford et al., 2018). It can make children feel respected and less vulnerable, reduce their anxiety (especially about imagined threats) and increase tolerance of treatment (Lansdown, 2011). Fourthly, children’s input can influence health care planning, health decision making and health research (Montreuil & Carnevale, 2016). Acknowledging children’s agency as experts in their own life is potentially powerful in health care research and health care design, shaping the way health is understood and healthcare is provided.

For young people (herein referred to as YP) in OoHC care (which may include foster care, residential care, kinship care or other types of statutory, public or alternate care), there are further strong imperatives to enable active participation in medical decision making. A significant debate around how to enact children’s right to be heard on health matters is around the weight to be given to their voice relative to that of parents (Fox and Gomez, 2018, Katz and Webb, 2016, Snyder and Nelson, 2018). For YP in OoHC, parents are often unable, unwilling, or unavailable to exercise responsibilities for decision making or assure their child’s best interests. Additionally, in the context of frequently changing carers, case managers, care placements and health practitioners, children’s voices as experts in their own lives become even more important (Tregeagle & Hamil, 2011).

YP in OoHC are understood to have special health care needs related to past experiences of abuse or neglect in that ‘they have or are at increased risk for a chronic physical, developmental, behavioural or emotional condition and also require health and related services of a type or amount beyond that required by children generally’ (McPherson et al., 1998 p.138). Indeed, in comparison to their same aged peers in the general community, YP in OoHC consistently experience higher rates of physical, developmental, and mental health problems (Crawford, 2006, Moeller-Saxone et al., 2016, Nathanson and Tzioumi, 2007, Ward et al., 2002, Webster, 2016, Williams et al., 2001). Therefore, health status, health care needs and health care provision are important, ongoing issues in the lives of YP in OoHC and can remain so through their life course (Anda et al., 2006, Norman et al., 2012).

Australian researchers have found that children in OoHC may be unaware of their right to participate in medical decision making (McDowell, 2018; New South Wales Office Advocate for Children and Young People [OACYP], 2018) and that Australian jurisdictions generally lack child protection practice frameworks that include effective tools for engaging children in decision making (Finan, Bromfield, Arney, & Moore, 2018). Young people in OoHC have stressed how important the right to be heard and taken seriously is to their feeling of self-worth while reporting poor opportunities to be involved in decision making about their mental health care (Monson, Moeller-Saxone, Humphreys, Harvey, & Hermann, 2019). In other jurisdictions, children from OoHC have reported that common measures of child health do not necessarily capture their additional and unique concerns, such as being disconnected from their health history or barriers to accessing reparative health care (Marsh & Selwyn, 2017). They have often not been consulted or included in decision making about their health care (Ward et al., 2002) nor consulted about qualitative research designs or the development of health interventions (McGinnity, 2007a).

Current best practice clinical guidelines call for systematic and periodic assessments of health status, health care needs and development of health care plans for YP in OoHC (Commonwealth Department of Health, 2011). A body of clinical research has developed around the findings of these health needs assessments (Crawford, 2006, Moeller-Saxone et al., 2016, Nathanson and Tzioumi, 2007, Ward et al., 2002, Webster, 2016, Williams et al., 2001). However, to the authors’ knowledge there has been no previous review of the literature examining the extent to which children have been enabled to participate in such research or to which children’s voices have been heard in determining health status and health needs. Therefore, the aim of this study was to synthesise the literature to examine if and how the voices of young people (YP) living in OoHC are represented in research examining their health status and health care needs.