Perceptions of participation: Child patients with a disability in the doctor–parent–child 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.
References (62)
- et al.
It takes three to tango: a framework for understanding patient partnership in paediatric clinics
Soc Sci Med
(2004) - et al.
Doctor–parent–child communication: a (re)view of the literature
Soc Sci Med
(2001) - et al.
Cerebral palsy
Lancet
(2004) - et al.
The physician–patient–parent communication: a qualitative perspective on the child's contribution
Patient Educ Couns
(2005) - et al.
Models of disablement, universalism and the international classification of impairments, disabilities and handicaps
Soc Sci Med
(1999) Counselling parents of children with chronic illness or disability
(1993)- et al.
From paternalism to partnership: family and professional collaboration in children's mental health
Am J Orthopsychiat
(1994) - et al.
Parent–professional partnerships and family empowerment
- et al.
Strengthening the family–professional partnership in services for young children
(1998) - Tito F, Roche S. Partnerships in general practice: a discussion paper. Consumers’ Health Forum;...
Patient-provider communication during the emergency department care of children with asthma
Med Care
Counselling in child disability: skills for working with parents
The orthopaedic forum. The doctor–patient partnership
J Bone Joint Surg
Observational study of effect of patient centredness and positive approach on outcomes of general practice consultations
Brit Med J
Limited autonomy and partnership: professional relationships in health care
J Med Ethics
Patient–partners may be political correctness gone too far [letter]
Brit Med J
Doctors should help patients to communicate better with them [letter]
Brit Med J
Building partnerships in general practice
Aust Health Consum
Working with families of children with special needs: partnership and practice
I value what you have to say: seeking the perspective of children with a disability, not just their parents
Disabil Soc
The ethics of participatory research with children
Child Soc
Personal accounts: involving disabled children in research
Consulting the children: interviews with children using residential respite care services
Disabil Soc
Doing research with children and young people who do not use speech for communication
Child Soc
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