Perceptions of participation: Child patients with a disability in the doctor–parent–child partnership

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Abstract

Objective

To explore how the doctor–parent–child partnership is experienced and if the child patient is considered a contributor.

Methods

Qualitative methodology using semi-structured interviews with 33 participants (9 paediatricians, 14 parents, and 10 children aged 8–12 with cerebral palsy) from a paediatric teaching hospital in Victoria, Australia.

Results

Children were reported to participate in the doctor–parent–child partnership. The child was not perceived to be an ‘equal’ or ‘regular’ partner as there were reports of variability in the involvement between children, as well as variability in the progressive involvement of each child. Three categories emerged in relation to the child's position in the partnership: creating a space for the child's involvement; acknowledging the variability of child preferences to be involved; and negotiating the child's age and development.

Conclusion

The doctor–parent–child partnership was perceived not necessarily to be dyadic, shared exclusively by the parent and paediatrician. Children were reported to contribute to the partnership, although there were limitations to the child's involvement.

Practice implications

Previous understandings of partnership are not sufficient to explain the complexities involved in a doctor–parent–child partnership, and a social-model approach to care is highlighted as an important factor for enabling the development of a triadic partnership.

Introduction

The topic of doctor–patient partnerships in health care has gained increased interest recently, with discussion centred on what a doctor–patient partnership might entail [1], [2], [3], [4], [5], [6], [7], [8], what the outcomes might be [4], [5], [9], [10], and whether or not partnership should be recognised and accepted as good clinical practice or simply as academic rhetoric [11], [12], [13], [14], [15], [16], [17]. This was debated in two theme issues of the British Medical Journal (‘Patients as Partners’ and ‘Embracing Patient Partnership’) in 1999 where it was clear that many medical professionals accept doctor–patient partnership as a worthy paradigm to work within, yet others disagree. Understandings of the doctor–patient partnership are still evolving and there is no consensus on exactly what a partnership looks like and how this might vary in different settings. Factors contributing to an effective partnership (summarised in Table 1) include joint decision-making and open communication [2], [5]. Doctor–patient partnerships are a way of empowering patients and leading to better patient health outcomes [1], [2], [4], [5], [18], [19], including the potential for increased well being [4], satisfaction [5], [9], compliance with treatment [5], a sense of control for patients [10] and a heightened sense of family well being [4].

Children with disabilities and their parents often share a long-term relationship with a paediatrician which provides the potential for understanding the child's role in this particular partnership. Most partnership research has focused on the adult patient–doctor partnership, and for child patients with a disability, research has focused on the dyadic partnership between the child's parent(s) and the health care professional [19]. Frameworks for understanding the family–professional partnership when a child has a disability have not regarded children as contributors to the partnership [19], despite social policy that advocates for their inclusion. The rights of children to express opinions about issues that affect them, to have these views heard and to be respected, are upheld by treaties such as the UN Convention on the Rights of the Child [20]. Children's experiences can differ from those of adults [21], [22], and this has been reflected in the growing body of literature that advocates for, and includes, children with disabilities as informants in research [21], [22], [23], [24], [25].

Social policies and research practices that encourage the inclusion of children with disabilities reflect a social-model approach to disability [26] which views limitations associated with impairment as predominantly social and not the direct result of identified pathologies [27]; thus social barriers (such as policies and attitudes), and not the physical impairment, are mostly responsible for disabling individuals [28]. Through inclusive policies and practices, children are enabled to participate and are not further disabled by assumptions that they cannot participate. Table 2 provides examples of what the social model might look like within a doctor–parent–child partnership.

Despite inclusive social policies and a trend toward child-inclusive research, perceptions of a child patient's participation in and contribution to a partnership-style relationship with their paediatrician has not been sufficiently studied—perhaps due to the assumed role of the parent who has legal responsibility [19] and thus is responsible for making medical decisions for the child. While studies have investigated child participation in medical encounters [29], [30], [31], [32], these focused more on conversational analysis and observations of medical encounters and did not gain the views of children, or the views of parents and/or doctors about a child's contribution. Researchers have advocated the need for investigating ways to establish “optimal involvement” of children in communicating with providers [33] and for gaining an understanding into what children think about becoming a partner in their health care [34]. Children often understand more about the concepts of health and illness than has previously been assumed [35], suggesting that when seeking to understand their health-related experiences, they would be capable of informing researchers of their own experiences, rather than relying on their parents to do it for them. Thus, one way of understanding how a doctor–parent–child partnership may be experienced (and to discover if the child is considered a contributor) is to talk to doctors, parents and children about what they think.

We present findings from a qualitative study that investigated the concept of partnership between parents, child patients with a disability, and paediatricians [36]. The focus of this paper is the child's involvement in the partnership, and in particular, how children were included and how they contributed.

Section snippets

Methods

A qualitative methodology (grounded theory) approach was used [37], [38], [39]. In-depth, semi-structured interviews [40] with 33 people (Table 3) were the source of data as the focus of the study was on gaining insight into the experiences and perceptions of participants, and not measuring or observing clinical consultations directly.

Cerebral palsy (CP) is a term used to describe a, “… range of non-progressive syndromes of posture and motor impairment that results from an insult to the

Results

Overall, the majority of participants perceived the family–paediatrician partnership to be important (Box 1). Children were perceived to contribute to the partnership and were viewed by paediatricians and parents as important contributors. While initially the relationship was largely reported to be dyadic (parent–paediatrician) the partnership appeared to evolve into a triadic one, particularly in line with a child's age and cognitive level. While partnership was generally an accepted term,

Discussion

This study found that through active participation during the consultation, and at home with parents, children with a disability were perceived to contribute to the doctor–parent–child partnership, contradicting previous understandings of partnership where a child patient with a disability was not considered as a potential partner [19], [54], [55]. Our results do not imply that the child is an ‘equal’ or ‘regular’ partner, as there was variability in the reported involvement between children,

Acknowledgements

I confirm all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story.

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