Reframing the focus from a family-centred to a child-centred care approach for children’s healthcare

Abstract

In this article, we argue for a conceptual move from family-centred care (FCC) to a child-centred care approach and the implications for clinical nursing practice. Firstly, we argue that the parents and professional dominance constructs an asymmetric relationship towards the child, which may take away the focus from the child; Secondly, we need to renew efforts to promote the fundamental principles of protection, promotion and participation rights for children and young people according to the United Nations Convention on the Rights of the Child declaration and thirdly, we need to strengthen the child’s perspective and to view the child as an agent representing own experiences and wishes to be respected and negotiated.

Keywords

Child-centred care child’s perspective family-centred care nursing participation rights

Introduction

The nursing care of children has evolved mainly from the professionals’ perspective and based on the values and attitudes in the existing society and culture.¹ Hence, care is usually provided for the child through a family-centred care (FCC) approach that has been described as a philosophy, framework and a model of care. In this article, we view it as a framework by which care is delivered. Considerable research, articles and books have been published about FCC, which attests to its importance but also highlights the difficulties with implementation in practice. Although FCC has been widely embraced by children’s nurses and is the model of choice in directing care delivery in many children’s units globally, research indicates that implementation continues to be problematic (Coyne et al., 2013; Foster et al., 2010) and minimal evidence exists about the impact and effectiveness of FCC for children and families (Shields et al., 2012). In a concept analysis, Mikkelsen and Frederiksen (2011: 1160) concluded that ‘the perspective of the ill child is not very prominent in the current conceptualization of FCC’ and that it is a misunderstanding to assume that outcomes are the same for parents and child. Shields (2015, 2010) suggests that FCC should be replaced with a model to guide the care of children not only in hospital but in all areas of healthcare, whilst others argue that FCC should be valued (Carter, 2008), antecedents and attributes examined (Smith et al., 2015) and focus changed to health and developmental outcomes of children (Tallon et al., 2015).

This article is intended as a position statement to suggest the adoption of a child-centred care (CCC) approach in nursing, rather than a critical synthesis of the problems with FCC in healthcare. The impetus for this article arose from a FCC workshop held with nurse academics involved in children’s nursing research in Lund, Sweden, in October 2014. The aim is to identify the key strengths and challenges of FCC and a CCC and to suggest that the care of children in all areas of child healthcare but specifically in nursing needs to be reframed through a child-centred lens and explain how such a move would influence clinical practice.

The FCC approach

The origins of FCC may be traced back to research about the adverse effects of hospitalization for both children and parents (Bowlby, 1951; Robertson, 1958a, 1958b) and the seminal Platt report (Ministry of Health, 1959), which emphasized the importance of parental participation in care for child’s emotional and physical well-being. For many years, there was no model to facilitate parents’ participation until Anne Casey developed the ‘Partnership Model of Paediatric Nursing’ (Casey and Mobbs, 1988), which was enthusiastically accepted by nursing profession as the ideal way of structuring nursing interventions with families in hospital (Coyne, 1996). Currently, patient- and family-centred care is seen as ‘an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families’ (Institute for Patient- and Family-Centred Care, 2015) and FCC as ‘care that is planned by the health staff around the whole family, not just the individual child’ (Shields et al., 2012). These perspectives reflect a system’s perspective of FCC.

FCC involves working in partnership with a family and caring for children in the context of their family, wherein health providers are expected to recognize and strengthen families’ special knowledge and skills whilst creating the right environment for the child through appropriate activities (Ahmann and Johnson, 2000). The principles of FCC include information sharing, respect and honouring differences, partnership and collaboration, negotiation and care in the context of family and community. In a concept synthesis of FCC and partnership nursing, Smith et al. (2015) identified the central attributes as building trust, listening to parents’ concerns and valuing parents’ knowledge of their child.

These are important and relevant issues for parents, but these characteristics are not directly applicable to children. Most often there is an asymmetric power balance in the relationship between parents and children, as it is between health professionals and families (Hallström et al., 2002b). The adult and professional dominance construct an asymmetric relationship towards the child, which takes away the focus from the child (Hallström et al., 2002a). Furthermore, the family’s needs may not be synchronous with the child’s needs (Björk et al., 2006). The focus on strengthening families’ knowledge, skills and ways of coping potentially detracts from consideration of the child’s needs. Kelly et al. suggest that in FCC, the parents are the key players and focus of research at the expense of children and claim that ‘when the emphasis moves to parents as consumers of paediatric healthcare, children are at risk of being objectified or even marginalized’ (2012: 199). The key strengths and challenges of FCC and CCC are presented in Table 1.

Table 1.

Key strengths and challenges of FCC and CCC.

Strengths and challenges	FCC	CCC
Centre of thinking and practice	Family	Child
Partnership and collaboration	Parents are the focus of the partnership	The child, belonging to a family, is the key and active agent in the partnership
Decision-making	The parents make the formal decisions	The child is recognized as agent with needs and rights to privacy and dignity, involved in decisions affecting their care and based on their competence
Respect and honouring differences	As assessed by the parents for a shared family interest	The child is seen as a social actor with its own rights
Information sharing	The family, and usually based on the parents’ views and preferences	The child is included and guided by an adult with opportunity to increase competence
Care planning	Care planned around the family as a unit	Care planned around the child’s perspective and preferences
Context of family and community	Care in the context of family and community	Care in the context of family and community

FCC: family-centred care; CCC: child-centred care.

The child’s perspective versus a child perspective

Turning to view the care of children from the perspectives of children themselves, as belonging to a family, will change the child’s position. Compared to developmental psychology, the new sociology of childhood offers an alternative understanding of child development and is a reaction towards children as socialized into adulthood or becoming matured (Qvortrup et al., 1994). Childhood is viewed as a social construction. The child is a subject and an agent by its own, who participates in the construction of its life, the lives of others and the society. The new sociology of childhood addresses structures and problematizes the adult-centred view of the child where the child’s place will be one of the objectification instead of its agency (Qvortrup et al., 1994). Instead, socialization needs to be viewed as a social process and therefore children are beings, competent co-constructors with others in everyday social relations (Sommer et al., 2010).

Thus, the discourse on the child’s involvement and participation in healthcare situations will differ between the approaches of CCC and FCC. The child’s perspective as an agent in a situation represents how the child experiences, perceives and understands the context and what has to be done. The child perspective is a construction of how the adults as agents, family caregivers and health providers view the child. The child perspective involves the adults’ general knowledge of childhood and knowledge of what is going to be done in the specific situation combined with an ambition to understand how the child perceives, experiences and acts in the situation (Sommer et al., 2010). However, individuals cannot be understood in isolation from each other, but rather as a part of their family (Bowen, 1978). The family is the emotional unit and families are systems of interconnected and interdependent individuals. The child cannot be understood in isolation from the system where members have roles to play and rules to respect.

Towards a CCC approach

A CCC approach acknowledges and reaffirms the rights of the child as outlined in United Nations Convention on the Rights of the Child (UNCRC) Article 12 which states that:

States shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child will be given due weight in accordance with the age and maturity of the child. (UNCRC, 1989)

In the Convention, children’s rights are seen as encompassing the fundamental principles of protection, promotion and rights of participation, which are key elements in CCC. The rights to protection include from harm, neglect and abuse, from fear, pain and loneliness as well as from too many medical interventions or denial of necessary treatment. Promotion includes the rights to resources as education and care. The rights to participation include the child’s self-determination, dignity, respect, integrity, non-interference and the right to speak up and make informed personal decisions. Age and maturity as expressed in the child’s competence are factors that determine to what extent the child’s views, opinions, needs, preferences, choices and decisions are to be met. To support countries in the effective implementation of these fundamental principles, the Council of Europe (2014) has developed a Child Participation Assessment Tool and several organizations have produced guidelines to incorporate the Convention principles into children’s hospital care. For example, Child Friendly Health Initiative has developed standards and a toolkit based on the UNCRC principles to assist healthcare workers to deliver CCC in everyday practice and at a policy level (Clarke and Nicholson, 2007); the European Association for Children in Hospital (EACH), with associated associations in Europe and Scandinavia work to promote the Charter for children in hospital (EACH, 2015); and the Nordic network for children’s rights and needs in healthcare in association with the European Association has written the Nordic standard from the child’s perspective (www.nobab.se).

Taking a CCC approach entails recognition of children’s right to participation in healthcare matters and decisions about their care. Although the principle of children’s participation is endorsed by different organizations, research in the healthcare setting indicates that children experience obstacles to participating in the decision-making process (Coyne et al., 2014; Hallström and Elander, 2005). Children are rarely involved in consultations or decision-making in their healthcare (Coyne 2008) and observational studies have revealed that children are often relegated to a non-participant status with information-giving directed at the parent as opposed to the child (Tates et al., 2002; Wassmer et al., 2004). Children’s needs for participation in decisions may be relegated because parents are the focus and additionally adults (professionals and parents) can limit children’s involvement because of a need to protect (Coyne et al., 2014).

Research demonstrates that children generally prefer to be included in healthcare interactions, and to know what to expect about their care, and to be respected as having opinions about their care and treatment (Hallström et al., 2002b; Runeson et al., 2002). They also want to be involved in decisions about their care, procedures and treatment in hospital (Coyne and Gallagher, 2011; Coyne et al., 2014) and when provided with information and involved in their care, they feel prepared and less anxious (Törnqvist et al., 2015). When children’s preferences for inclusion are not met or impeded, they feel powerless and depersonalized (Coyne, 2008; Runeson et al., 2002). Research with children clearly illustrates that they are not passive recipients of care and can offer valuable insights into how care should be delivered (Onugha and Finlay, 2012; Schalkers et al., 2014). Therefore, children’s participation in decision-making in healthcare is frequently more dependent on parents’ and health professionals attitudes rather than on their actual competence (Martenson and Fagerskiold, 2007).

Taking a child’s perspective means that the child is seen as both a subject and agent (Sommer et al., 2010) and possessing competencies. A CCC approach requires health providers to recognize that a child’s competence needs to be assessed in relation to specific and not general competence (Söderbäck et al., 2011). Researchers suggest that children will influence their own involvement by being engaged or disengaged in the decision-making process (Gabe et al., 2004). A child’s competence can be illustrated as existing on a continuum from full competence in a certain issue, on a certain occasion, to inability in other issues and situations. Ensuring participation from a situational standpoint will allow a balance between protection and shared decision-making, as it enables children’s voices and preferences to be heard (Coyne and Harder, 2011).

In CCC, the child is included as an actor by its own, getting space, being respected and involved in communication by receiving information, discussing options, voicing preferences to negotiate and make choices, and thus participating with parents and healthcare professionals. For a CCC approach, the actions include involvement, eliciting the child’s perspectives, actively listening, hearing and responding to their views and preferences, building relationships and tailoring care to the individual child’s needs. To ensure that children’s efforts to participation are supported, it is extremely important that children are given the opportunity and space. Creating spaces for participation is more than structural issues; it is about providing children with time, opportunity, support and active engagement. Healthcare professionals need not only to hold a child perspective that acknowledges children as actors with competence to tune in to and negotiate in a situation (Hallström and Elander, 2005; Harder et al., 2013) but also to be cognisant of the varied strategies which children use so that they can ensure that the care they provide is sensitive to and supportive of children’s actions (Harder et al., 2011, 2013).

A CCC approach requires and enables adults to include the child’s perspective in their actions and care delivery (Carter et al., 2014). A child’s needs must be considered in each situation, meaning that healthcare professionals should use their power and agency wisely and be sensitive towards a child’s ways of expressing his/her needs. In a CCC, the child is given guidance. Guided participation by health professional and parents is one way to achieve the child’s rights and view the child as an agent interconnected with other in a situation. Guided participation involves ‘children’s active learning in the context of sociocultural activity with the guidance of more skilled partners’ (Rogoff, 1990). Here the child’s right to negotiate and choose is a crucial part of being a right holder. Guided participation means a mutual involvement and understanding, that is, the process when individuals interact with each other and by that change their own perspective as well as understanding of the other’s perspective. The focus lies on an interpersonal engagement in which the collective efforts build a sociocultural knowledge (Rogoff, 1990). Guiding the child’s participation involves actions such as confirming, pointing, demonstrating, labelling, questioning and expanding on the child’s initiatives and by filling in, modelling, preparing and keeping the aim in focus, which may help the child to act within a proximal competence (Sommer et al., 2010). Children’s participation should be viewed as a process that evolves over time and involves shared responsibility or negotiation of responsibility throughout childhood. It is clear that the concepts of trust, respect, autonomy and self-determination are essential concepts that underpin the CCC approach. These concepts are closely connected with child–professional relationships, regulation of information and communication interactions. To respect children’s rights requires a CCC approach and a clear understanding and commitment to embedding children’s rights in healthcare provision.

Implications

Taking a CCC approach involves closer scrutiny of what we mean by the term ‘child friendly hospitals’ and ‘child friendly healthcare’ with consequences for space and structural issues concerning children’s needs. Changing the focus to a CCC approach may reduce the dissonance experienced by adolescents and young people experiencing obstacles to exerting their self-determination, receiving information and involvement in consultations during hospitalization (Coyne et al., 2014). Another example is when they may not need or desire constant parental presence (James and Curtis, 2012). Also research with younger children show that a change to a CCC approach will better grasp the child’s way of demonstrating how to be engaged in a vulnerable situation from its own perspective (Söderbäck, 2012). Although there is a commitment to hearing children’s voices, there has been to date less progress on facilitating choices and involvement in healthcare (Coad and Shaw, 2008; Coyne and Kirwan, 2012). More research needs to be conducted using child-centred methods to access directly children and young people’s experiences (Carter and Ford, 2013). This evidence will help identify and address potential gaps in education, research and clinical practice in children’s nursing and healthcare.

Conclusion

Reframing the approach of nursing children is only the first step in a long process. To be able to plan for and to implement a truly CCC approach not only requires a commitment from health professionals, but also involves education and discussions that require both commitment and managerial and economic support from leaders in children’s healthcare and managers of health services. Otherwise, there is an obvious risk that CCC like FCC becomes an ideal (Shields, 2015) and something to which health professionals caring for children say they use but without being fully aware of how it should shape clinical practice and all interactions with children.

In the delivery of FCC, the child’s perspective is not prominent nor the focus. The approach of FCC needs therefore to be redirected towards a child-centred approach, which incorporates the rights of the child to participate in all aspects of healthcare delivery in conjunction with the needs of their family. This move is consistent with governmental policies and national reports in Europe. Adopting a child-centred approach entails recognition and focusing on children’s agency and rights and the valuing of children’s voices, experiences and participation.

Footnotes

Acknowledgement

The network group of Scandinavian nurse academics actively involved in research in children’s nursing who initiated and supported the initiative is gratefully acknowledged.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Note

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