Children's care: family centred but child focused

This article was prompted by the controversy surrounding the decision to recommend the vaccination of children and young people against COVID-19, and discussions about the process for gaining consent for this. These discussions refocused attention on the way that health care is delivered to these groups and, in particular, on who should consent and under what circumstances, and for whose benefit interventions are given. For children's nurses, this goes to the very essence of what nurses do and how they understand children's nursing. In addition, it reignited the discussion about the context of family-centred care, and how it will move forward in an age where children's rights as individuals are increasingly recognised. This article aims to discuss this in the context of current and previous legislation and guidance. It is important that nurses remember that at all times they have both a professional and a legal duty of care (Royal College of Nursing (RCN), 2023). Judgements about these require a broad knowledge of these areas and other influencing factors, which this article will summarise.

The predominant model of care used by children's nurses in the UK is probably family-centred care. A recent Delphi study (Al-Motlaq et al, 2019), seeking the views of 18 ‘experts’ from the International Research Network for Child and Family Centred Care, sought to identify key features of family-centred care. However, this suffered from not including ‘non-experts’, children and young people, or their parents, in the study. Modern guideline development methods emphasise the importance of the involvement of key stakeholders in developing clinical recommendations (Alonso-Coello et al, 2016). Furthermore, there are distinct legislative, ethical, historical, and organisational differences between countries that affect how family-centred care would be operationalised locally. In the UK, family-centred care evolved over time, from several key government reports and key papers or movements.

The six ‘ages’ of children's nursing

Children's nursing in the UK can be seen to have been through six broad phases in the modern era. These are not necessarily discrete stages, since the development of children's nursing has been incremental, and some changes have taken may years to implement, and so some of these overlap.

• The post-Platt report era: this is the beginning of what many would consider modern children's care. It was typified by a move towards separate paediatric facilities in hospitals, the provision of education for children when sick, open visiting and the ability for parents to be resident, specialist training for doctors and nurses, and pre-admission preparation (Ministry of Health, 1959). Although the Platt report was published in 1959, some of the recommendations took much longer to implement.
• The Partnership Model phase: in the late 1980s, a new model emerged, based around nurses developing a partnership with parents with regard to the care of the child. This stated that the care of children is best carried out by their families, with help from the healthcare team whenever necessary (Casey, 1993). The emphasis here was on supporting, teaching and referring families for further assistance where necessary to help them to achieve independence; but carrying out care where this is not possible.
• Family-centred care: this is really an extension of how most children's nurses work today. There is no one definition of family-centred care, which is both an advantage, as it can be adapted very easily to different circumstances, and a disadvantage, as no one really knows for sure what it is. One definition states that it is a way of caring for children and their families that ensures that care is planned around the whole family, not just the individual child or young person. Therefore, all the family members are recognised as care recipients (Shields et al, 2006)
• The Welfare of Children and Young People in Hospital: this was a Government document (Department of Health, 1991) that was heavily influenced by three reports:
• – The Platt report (as discussed above)
• – The Court report, otherwise known as the Report of the Committee on Child Health Services, which advocated integration of child health services (Court, 1976)
• – Working for Patients, which was a Government white paper published in 1989, most notable for introducing the ‘internal market’ by splitting the bodies who were responsible for the provision of care from those responsible for its purchase (NHS Management Executive, 1989)For nursing, it laid great emphasis on sharing information and involving parents and carers in children's health care but recognised that children also had a right to privacy and information. The ‘comprehensive children's department’ should allow for appropriate specialists to be employed, a child-centred routine in respect of sleeping and feeding patterns, the provision of education and play facilities, and ease the process of meeting the needs of children with special welfare needs. Although no specific recommendation was made regarding age groups, the special needs of young people aged 15-19 years was noted. There was an emphasis on play, education, and high-quality and dedicated facilities.
• Child-centred care: this explores the evolution of family-centred care to a model using a child-centred approach in child nursing. This approach emphasises the central importance of the child, their participation in their health and wellbeing needs, in nursing research and their position as members of society (Carter et al, 2014). Child-centred nursing focuses on the holistic needs of the child and recognises all considerations around the voice of the child from their rights to individualised health and wellbeing care planning and transition to adult services. This shifts the focus onto the family being around the child, as opposed to the child being part of the whole family.
• The NHS Long-Term Plan: published in 2019, this Government document laid out the future direction for the NHS, and promised selectively moving towards a ‘0-25 years’ service (NHS England/NHS Improvement, 2019). The key feature of this stage, which is yet to be implemented, is this idea of the integration of children and young people's services. However, it is not clear that nurses trained in a system of discrete fields of practice are well positioned to provide this type of care.

The predominant model among these is probably family-centred care. Although not well defined, Hutchfield (1999) helpfully described this in terms of a hierarchy, starting with parental involvement at the lowest level, then moving through participation, to partnership, and finally family-centred care. This is useful for understanding the relationship between these different phases, as the post-Platt phase bears many of the hallmarks of the ‘lower levels’ of family-centred care such as involvement in their child's care, and negotiation of care but with the nurse as gatekeeper. The higher levels see parents as having equal status to the nurse, and the nurse acting as consultant/counsellor with parents leading care. However, none of these adequately reflect children's nursing today, and how it is likely to develop in the future.

Another view of family-centred care is that it consists of a values-based model that is conceptualised from a variety of key concepts from social theories about the family. These key concepts view the family as having a functional and performative role in society. Families play a fundamental part in the construction of society and social relationships; they also provide practical and emotional support for all members of the family. In turn, the function of the family resonates with Maslow's Hierarchy of Needs model in providing the basics of physical needs to self-esteem, safety and security (Maslow, 1943). Thus, from the viewpoint of the child, the family is seen as support around the child. It is something that nurses must not ignore but they should be able to manoeuvre between both family-centred and child-centred care, while keeping child-centred care the most fundamental factor of family-centred care. Both areas of centred care complement each other from their individual lens. Although the literature suggests that parents require support from children's nurses to make key decisions for their children, it is important to recognise the significant challenge of listening to children's voices about their treatment and care (Roscigno, 2016; Hurtubise and Carpenter, 2017; Gates et al, 2018).

Integrating legislation, policy and guidance

It is important when considering a model of nursing, to remember the legislative, policy and social context in which care is provided. Each country will differ in these, and this can be seen even within the UK, as there are marked differences between the four countries that make it up. In addition, there has been increasing acknowledgement of the need to focus on the child as a person with their own experiences and wishes, which need to be respected and negotiated, and which are separate from that of the family (Coyne et al, 2016). Therefore, although it may be possible to identify key features of family-centred care on an international basis, the different social and legislative backgrounds make a single definition problematic, and great care needs to be taken not to become ethnocentric. For example, the ages at which young people can consent to sexual activity, vote, get married, and many other activities varies widely even within Europe (European Union Agency for Fundamental Rights, 2017). Thus, the authors would suggest that in an area where practice is diverse, only the most important principles can be laid down internationally. International treaties such as the UN Convention on the Rights of the Child are not usually incorporated directly into domestic law, but rather interpreted and used to inform domestic legislation (Department for Education, 2010).

Laws in the UK and some other countries that have similar legal frameworks may be the result of common law, that is law made by judges based on precedence; or statute, that is law made by Parliament. It is important to differentiate these from protocols, which set out details of the what, when, by whom, and how care should be provided; policies, which are organisational statements of intent that may be mandatory; and guidelines, which make recommendations regarding best practice but which are not mandatory.

All nursing activities take place within a broad framework dictated by these, some of which will differ according to context. As well as these specific requirements, there are more general ones, most importantly the legal and professional duties of care. This is defined as the standard to be expected of an ‘ordinarily competent practitioner’ performing that particular task or role (RCN, 2023). Guidance is important in identifying what is reasonable in this regard, but it does not detract from the skill of the nurse in applying this to individual children and families. It is not any variation in care that is unacceptable, but unwarranted variation (Holden, 2017). Nurses must adapt their care for individual circumstances, but where this occurs there must be a clear rationale that is explicitly stated. Moreover, nurses must be flexible in changing their stance from family-centred care to a child-centred approach, giving more kudos, onus, involvement and ownership of the care needs directly to the child. In essence, the child should play the largest part and be at the heart of all nursing interventions and clinical decisions. Nevertheless, recognising the child's or adolescent's unique perspectives, emotions and understanding enhances the communication between all involved in the child's care.

Children and young people exist within families, which may be defined in many ways; there are adults who have legal positions of responsibility for the child or young person. In the UK this is laid down in the Children Act 1989, which defines parental responsibility. Although the best interests of the child and the family are normally the same, this of course is not always the case and so this model clearly differentiates between the child and family, putting the child at the centre. An extreme example, but one that makes this clear, is the case of Daniel Pelka, who was killed by his mother and her partner. In the Serious Case Review into his death, learning points included the need to directly engage the child and to try to gain an ‘understanding of their experiences, wishes and feelings’ (recommendation 15.5), that all involved should be prepared to ‘think the unthinkable’ (recommendation 15.12) (Lock, 2013). One of the key aspects of safeguarding that should be extended to all areas of children's nursing is the empowerment of children to ‘express their experiences, and make their voices heard, even when they are not able to verbalise their stories’ (Brandon et al, 2020).

Key to this is the law regarding consent, commonly known as Gillick competence, and in particular the test posed by Lord Scarman in Gillick v West Norfolk and Wisbech that ‘the parental right to determine whether or not their minor child below the age of 16 will have medical treatment terminates if and when the child achieves a sufficient understanding and intelligence to enable him or her to understand fully what is proposed’, and guidance regarding transition from child to adult services (National Institute for Health and Care Excellence (NICE), 2016). The Family Law Reform Act 1969 also allows for those aged 16 and 17 years to consent to treatment themselves. These require that nurses consider development not just in terms of the physical and cognitive aspects, but also in terms of children's specific needs in these areas. Also, the relationship between child and family and nurse is not static, and any model needs to accommodate this changing relationship.

To this end, sometimes a distinction is made between formal consent, the subject of the legislation outlined above, and assent, which has various meanings ranging from simply seeking co-operation to being a proxy for consent in those not deemed Gillick competent. A better approach is that outlined by Sibley et al (2016), who argued that assent is more pedagogical, helping children and young people to develop an understanding of how decisions are made, and so deepening their understanding and helping them to develop autonomy (Sibley et al, 2016). Thus, assent is not a proxy for consent, but a different approach, being centred on the child and their current and future development.

It is arguable that not taking due account of a competent young person's views, or sharing information without permission, breaches Article 8 of the Human Rights Act 1998. Article 8 protects the right to respect for a private and family life, which ‘includes your right to control who sees and touches your body. For example, this means that public authorities cannot do things like leave you undressed in a busy ward, or take a blood sample without your permission’ (Equality and Human Rights Commission, 2021)

Recent Court judgements have re-emphasised the primacy of the child and their best interests. With regard to one recent case the judge stated:

‘… respect for [the child], as a person, involves a clear recognition that as a human being, he is more than the raft of medical complexity that I have set out above. He is not, in my judgement, simply who he is now, but he is also who he has been throughout his short life.’

Barts Health NHS Trust v Dance and Battersbee [2022], paragraph 25

This requires those involved in a child's care to really understand them as individuals and not simply as patients or extensions of their family. The predominant responsibility towards the child was demonstrated in the Gard case, where the judge wrote:

‘A child's parents having parental responsibility have the power to give consent for their child to undergo treatment, but overriding control is vested in the court exercising its independent and objective judgment in the child's best interests.’

Great Ormond Street Hospital v Yates and others [2017], paragraph 11

One of the benefits of having a flexible approach to the organisation of care, such as family-centred care, is that it can be integrated with many other models; as such it can be seen as a ‘macro’ model, providing an overarching approach, into which ‘micro’ models providing more detail can be integrated. There are different micro-models of care, and this model does not specify which should be used. Common models include those by Roper et al (2000) and Orem (1991). These should be used with clear reference to the nursing process, with its emphasis on systematic assessment, planning, implementation, and, most importantly, evaluation. The latter step is most important if care is to be responsive and effective to prevent continuation of ineffective care and is mirrored by the increasing emphasis that is put upon audit and applying an evidence-base that is transparently applied to nursing care.

The development of nurses: from family-centred care to a child-centred care practitioner

One of the key changes that nurses need to make as their career develops is the move from being a nurse who primarily delivers care, to one who both delivers and co-ordinates care. Consideration of by whom, and how this co-ordination is done is of paramount importance. Nurses are now seen as more than professionals who deliver nursing care, they are also confidants, counsellors, and teachers, developing children's holistic skills, serving as advocates and relationship builders between practitioners and the child.

An additional trend that nurses need to be prepared for is the development of seamless services for children, young people and adults. This has been identified within the NHS Long Term Plan as a priority for mental health (NHS England/NHS Improvement, 2019), but this exposes a weakness in current nurse education that needs to be addressed, which is that since the loss of the general nursing qualification and more recently the common foundation programme, the UK has an almost uniquely inflexible and ill-prepared nursing workforce for this sort of service. How best to provide this in the face of such a fragmented workforce is a broader question for the profession and government. One of the key areas for development in these areas is sustaining child development training throughout all programmes of nursing specific for children's nurses. Using the model of bespoke services and programmes in early years that is wholly child centred can be mirrored in child nursing.

The status of evidence-based guidance

There is rightly a strong emphasis on the use of evidence in nursing. Evidence-based guidance is of the utmost importance in providing nursing care, as well-constructed guidance transparently reflects acknowledged best practice, and is clear where evidence is lacking. However, it is important that, although guidelines should inform care, they are not mandatory. Indeed, NICE (2021) stated:

‘When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service.’

Thus, nurses need the skills to apply these guidelines alongside the needs of the individual child and family that will be clarified by the individual assessment. It is also important to understand how different sets of guidelines relate to each other, for example how guidance on the management of fever and those related to urinary tract infections might relate.

Conclusion

This article has aimed to develop the family-centred care model by emphasising the predominance of the child over the family by emphasising the ethical and legal position of children. It has also developed the use of evidence, noting the importance of integrating policy, guidance, and transparent decision making, noting the different definitions of what might be considered to be normal. Finally, it emphasises the importance of consent, and even where a child is not able to formally give consent, a newer interpretation of assent as part of a process of developing understanding should be used. It is important that models are not static, but change according to need; and also that they reflect the local situation. By being explicit about how legislation, policy, and conscious variation are integrated into practice, this model provides this flexibility.

KEY POINTS

• Children's nursing has been through a number of key stages, from the changes inspired by the Platt report to the NHS Long Term Plan
• Key legislative changes have put greater emphasis on the rights of the child
• Child protection inquiry reports have also emphasised the importance of putting the child at the centre of consideration
• The relationship between child, family and nurse is not static, and children are not a homogeneous group
• Current methods of training nurses in the UK, which separate fields of nursing, may not prepare nurses well for an integrated children and young persons service

CPD reflective questions

• What do you think that family-centred care means? Try to put your understanding into a few sentences
• Looking at the six ‘ages’ of children's nursing, try to map these against wider changes in society
• Looking at the key question for Gillick competence, what might you consider in deciding whether a child is competent?