Research that explored parent–professional interactions found the way information was communicated was not always conducive to involving families in care and care decisions (Smith et al., 2015a), highlighted in the followed extracts:

I needed to know what was happening so I could let family know back at home. I was just having to guess because nobody told me anything. Admission 7, dad;

There is so much conflicting information really. They (doctors and nurses) don’t seem to take on board what you’re saying, that’s my feeling.  No they really have their own agenda and that’s what we are on now – their agenda. Admission 2, mum (Smith et al., 2015a, p.1308).

• What can nurses do to ensure parents are fully informed about all aspects of their child’s condition and care?
• What can nurses do to involve parents in care and care decision?

Answer: In your answers you may have considered how nurses can and do share information with parents. This is their child and parents have a vested interest in making sure their child’s needs are met. However, parents cannot contribute to care and care decisions effectively if they do not have the information they need to be involved in care.  A number of philosophies, frameworks and models of care that underpin the way nurses work with children, young people and families, are available. However, they generally have key elements required for involving families in care, which include:

• Negotiation
• Empowerment
• Partnership
• Shared decision-making
• Mutual sharing of information

In your answers you may have considered that terms are often used interchangeably making it difficult to understand how these elements contribute to effectively involving children, young people and parents (Coyne et al., 2011). Involvement and participation in care are nurse led approaches and may be reliant on the nurse to initiate this and invite children/parents to be involved and participate in care. Involvement may imply that children/parents are fully involved.  However, this would depend on the perspectives of the child/parent and nurse, which may differ. Similarly, participation in care can be perceived in different ways by nurses and children/parents. Participation implies that the nurse and child/ parent have mutually agreed the level of participation that the child/parent chooses.

Negotiation and empowerment play an important role in enabling children/parents to be active partners in care and require the children’s nurse to communicate effectively.  Negotiation places the emphasis on all parties having a contribution to partnership working. Negotiation of roles and mutual clarification of child/parent and nurse roles is claimed to underpin effective implementation of family-centred care (Smith et al., 2010). However, failure to clarify roles is well documented in the literature and may contribute to the lack of effective implementation of family-centred care (Corlett and Twycross, 2006).

Shared decision-making is becoming more prominent in clinical care areas and is based on the premise that each party should contribute to care decisions; the patient (child and family) brings their unique experiences to the discussion and child health professionals bring experiences and knowledge of care in similar situations, in order to mutually agree care pathways (Elwyn et al., 1999).

Supporting evidence

Corlett, J. & Twycross, A. (2006) ‘Negotiation of parental roles within family-centred care: A review of the literature’, Journal of Clinical Nursing, 15: 1308–14.

Coyne, I., O’Neill, C., Murphy, M., Costello, T., & O’Shea, R. (2011) ‘What does family-centred care mean to nurses and how do they think it could be enhanced in practice’, Journal of Advanced Nursing, 67 (12): 2561–73.

Elwyn, G., Edwards, A. & Kinnersley, P. (1999) ‘Shared decision-making in primary care: The neglected second half of the consultation’, British Journal of General Practice: 477–82.

Smith, L., Coleman, V. & Bradshaw, M. (2010) ‘Family-centred care: A practice continuum’, in L. Smith and V. Coleman (eds), Child and Family-centred Healthcare: Concept, Theory and Practice, 2nd edn. Hampshire: Palgrave. pp. 27–57.

While working on a busy children’s ward I cared for a 9-year-old girl I will call Molly with acute abdominal pain. Molly was known to the ward and has type 1 diabetes mellitus requiring frequent hospital admissions. Molly and her family were competent in managing her diabetes and delivering treatments. However, during acute illness parents can experience exclusion from care they normally deliver, with nurses taking over care responsibilities. Nurses can find parents expert knowledge threatening, particularly if recently qualified. This was frustrating for Molly’s family. Although she presented to the hospital with abdominal pain, they were unable to provide the care they usually delivered in relation to her diabetes.

Although Molly and her family did not have the skills to manage the intravenous insulin, I realised they could retain responsibility for her blood glucose monitoring and interpret and report the result to the nurses, who could then adjust the infusion rates. With closer partnership working between the nurses, Molly and her family, I was able to support them to be involved in the delivery of the insulin, which allowed them to continue managing Molly’s diabetes.

Molly and her mum reported that this involvement alleviated their distress during Molly’s illness. Retaining usual care responsibilities made them feel safe, valued and gave them confidence in the nurses who provided the care they could not deliver.

• Reflect on the challenges in the above case study that arose when collaborating with families of children with long-term conditions in acute care settings.
• Consider any similar experiences you have had when in practice.

Answer: In your answers, you may have considered that parents can be experts on their child’s care when their child has a long-term condition (Smith et al., 2013). However, some parents may feel that their contribution is undermined, for example when the child is acutely unwell. Nurses can communicate effectively with parents to establish how they want to continue to contribute to care, so that this can then be supported. Negotiating care is a key element of family-centred care, but is often omitted with neither nurses nor parents being sure who is providing which aspects of care (Coyne, 2015.  Conversely, there may be times when parents of children with long-term conditions may not have experience of their child’s acute care needs and therefore communication and negotiation can establish parental knowledge and experience of the child’s current care needs and desire for involvement without ungrounded assumptions.

To establish parents’ desired level of involvement in their child’s care, nurses need to communicate effectively with them. The importance of effective communication skills, which is at the core of all nursing activities, and essential to enable children, young people and families to be involved in care, has been highlighted in the chapter (McCabe and Timmins, 2012). In relation to children, young people and families, effective communication includes:

Active listening – listening in a way that helps you to: understand and interpret verbal and nonverbal communications; understand the family context; and evaluate the information being conveyed. Allow time for family members to share information without interrupting and ask open-ended questions when clarification of information is needed.

Attending – refers to the ways nurses convey they are listening and valuing the information being shared. Frameworks such as SOLER (Squarely face the person; Open posture; Lean in; Eye contact is maintained;  Relax and adapt a natural posture) can help nurses develop attending skills. Attending includes respecting and valuing the family’s unique perspectives and concerns.

Empathy – can help you to try and understand the family situation and concerns, and respond to a child’s, young person’s and parents’ feelings and emotions, with personal acts, such as comforting individuals, often highly valued.

Reflecting and evaluating – helps to summarise your understanding of what information is being conveyed to check you and the family have a shared understanding of key points, and evaluate what can be done to address what is being communicated to meet the child’s, young person’s and family’s needs.

• – being friendly or approachable, for example the way you move, use gestures and your facial expressions can impact on whether you convey that you are interested in the family.

Supporting evidence

McCabe, C. & Timmins, F. (2012) ‘, in W. McSherry, R. McSherry and R. Watson (eds),Care in Nursing: Principles, Values and Skills. Oxford: Oxford University Press.

Smith, J., Cheater, F., Bekker, H. and Chatwin, J. (2015) ‘Are parents and professionals making shared decisions about a child’s care on presentation of a suspected shunt malfunction?: A mixed method study’, Health Expectations, 18 (5): 1299–315.

We were asked at the time of Alex’s diagnosis, ‘What do you want to tell Alex?’ Al was 14-and-a-half years old, sensible, able to verbalise emotions and debate the rationale for decisions made.  So we took the view he should be included in everything – nothing to be hidden from him.  We did not want to have discussions in secret or whisper behind closed doors. Al could consent to everything himself, although we were all involved in the discussions about whether he would go on a drug trial treatment protocol or offered alternative options, and what the pros and cons for all care and treatments were so he (and we) could make informed decisions.  Al was the one who knew how he was feeling and Al was the one to live with the consequences of decisions made so it seemed right he should be involved.  

• Compare Marta’s contrasting experience when Alex was cared for on a children’s oncology unit by accessing the online accompaniment to this chapter. 
• How can nurses effectively communicate with children, young people and their families?

Answer: In your answers you may have considered that the involvement of children and young people in decisions about their care is central to the philosophy of children’s nursing (Royal College of Paediatrics and Child Health, 2011).  Alex’s mother recognised this and took steps to ensure he was involved in decisions about his care.  Young people with sufficient understanding can be involved in care decisions and can independently consent to treatment if deemed Gillick competent (Griffith, 2013). However, nurses and other healthcare professionals are often faced with the need to assess competence and understanding in children with a range of ages and developmental stages. Establishing competence is based on the ethical principle of autonomy which asserts that wherever possible, children and young people can and should be involved in decisions about their care (Griffith, 2013).

However, decisions about consent and refusal are legally governed, for example:

• The Children Act stipulates who holds parental responsibility for a child under 18 years old: www.legislation.gov.uk/ukpga/1989/41/section/2
• Legally, the refusal of treatment by a minor can be overturned by a person with parental responsibility or the courts. However this poses a difficult ethical dilemma, with potential conflict between acting against the young person’s wishes and respecting their autonomy. It is worth noting that in England a child’s refusal to treatment has not been upheld by the courts.

When researching this, you may have identified credible frameworks/guidance to support your practice, written by professional bodies such as the BMA, GMC, RCN, Department of Health or legal documents such as the Fraser Guidelines. Underpinning principles advocate that children must have full understanding of the proposed treatment, its risks and benefits and the alternatives. While these references act as a useful guide to professionals they do not necessarily help children’s nurses to assess children’s cognitive understanding. A comprehensive assessment is dependent on developing a good relationship with the child//young person and a sound knowledge of child development and effective communication skills (Griffith, 2013). For some younger children this may require the use of play to develop and assess their understanding.

Respecting children and young people’s views and contribution to care is important and provides young people with a sense of control (Waller, 2011). From a cognitive perspective, a young person approaching adulthood will have developed sufficient reasoning skills and therefore be competent to consent or refuse healthcare compared to the younger child. However, socio-cultural factors and the uniqueness of the individual child or young person and their experiences and opportunities will influence their development and therefore ability to make decisions (McCabe, 1996). 

Supporting evidence

Griffith, R. (2013) ‘Nurses must be more confident in assessing Gillick competence’, British Journal of Nursing, 22(12): 710–11.

McCabe, M.A. (1996) ‘Involving children and adolescents in medical decision making: Developmental and clinical considerations’, Journal of Pediatric Psychology, 21: 505–16.

Royal College of Paediatrics and Child Health (2011) Involving Children and Young People in Health Services. London: Royal College of Paediatrics and Child Health.

Waller, L. (2011) ‘Ethics, law and paediatric medicine’, Journal of Paediatrics and Child Health, 47: 620–23.

What is meant by the term ‘family’?

• What is patient and family-centred healthcare?
• What is family nursing and how does this differ from family-centred care?
• How does family-centred care relate to nursing and nursing practice?

Think about the questions above and discuss with peers.

Answer: The following websites answer the questions for this activity:

• Institute for Patient and Family-Centred Care: www.ipfcc.org/faq.html  (accessed December 2016)
• International Family Nursing Association: http://internationalfamilynursing.org (accessed January 2016).

‘Family centred-care is a topic that has been extensively taught during our nursing course, beginning in year one and its importance reinforced each year, including reflecting on how we practise family-centred care during placements.  As a third-year student and currently undertaking my fifth placement, I have come to realise the importance of family-centred care. One occasion where I observed family-centred care in practice was when a family were given the devastating news that their daughter, 10 years of age, had been diagnosed with type 1 diabetes mellitus. The condition affects the whole family, as the child will need support with dietary restrictions, lifestyle, monitoring blood glucose levels, calculating doses and administering insulin. It was vital to support the whole family suddenly facing their child’s life changing illness. Even though as students we had been taught about family-centred care in lectures, it is very different to put into practice when you have a very sick child needing immediate care, and distraught family members requiring answers as to why their daughter had developed diabetes, and wanting information about diabetes and its treatment.’

Emma, 3^rd year child nursing student

• Based on the scenario outlined, discuss with your peers and mentors the key skills required to involve the child and family in care decisions, and how care can be negotiated and an agreement reached about roles and responsibilities.

Answer: In your answers you may have considered that one of the main key skills required for involvement of families in care is effective communication between nurses (and other healthcare professionals) and parents. Communication strategies and principles are discussed in Case Study 1.1 answers.

The scenario is based on an acute care area. You may have considered the barriers to effective communication in some areas such as acute care areas. These may include:

• Relatively short stays for children and young people limits the time to develop effective relationships. As discussed in the chapter, children are only admitted to hospital if care cannot be provided closer to home, resulting in children being admitted who are generally sicker and who are discharged as soon as they are well enough.
• Care delivery may take priority leaving little time for negotiation. While valuing parental involvement is key to collaborative working, with each party bringing their unique contribution to the care of the child (Elwyn et al., 1999), this may be overridden by the demands of care delivery in an over-stretched acute care area.
• By virtue of the child being acutely ill, and children and families already being under considerable stress, nurses may decide that discussions about roles and responsibilities may be more timely once the child is stabilised, potentially leaving families unsure about their role initially.
• Assumptions about power and roles may be a barrier. In your answers you may have considered that the power was held by the nurses. Parents coming into acute care areas can be disempowered to care for their children, even in delivering care which they would normally undertake at home (Coyne, 1995). Parents do not usually know the routine or culture of the ward environment.

Overcoming barriers relies on nurses taking every opportunity (however brief) to communicate effectively with parents and mutually agree roles and responsibilities in the child’s care. Some parents may want limited involvement, perhaps due to competing demands from siblings and this should be respected. Nurse’s expectations of parents can act as a further barrier, with nurses expecting parents to do things which may be causing a high level of anxiety for the parent, as demonstrated in this case (Rennick et al., 2011).

The emphasis should be on choice, rather than expectation of involvement.  

Negotiating roles and agreeing roles and responsibilities is discussed further in Activity 1.1 answers.

Valuing parental expertise and contribution is discussed further in Case Study 1.1 answers.

Supporting evidence

Coyne, I. (1995) ‘Partnership in care: Parents’ views of participation in their hospitalized child’s care’, Journal of Clinical Nursing, 4: 71–9.

Elwyn, G., Edwards, A. & Kinnersley, P. (1999) ‘Shared decision-making in primary care: The neglected second half of the consultation’, British Journal of General Practice: 477–82.

Rennick, J.E., Lambert, S., Childerhosse, J., Campbell-Yeof, M., Filon, F. & Johnston, C.C. (2011) ‘Mothers’ experiences of a Touch and Talk nursing intervention to optimise pain management in the PICU: A qualitative descriptive study’, Intensive and Critical Care Nursing, 27: 151–57.