Care of the Child with Ophthalmic Problems

Manchester

Introduction

Paediatric care has changed dramatically in the last few years and this has affected the care and management of ophthalmic patients. Children and babies are, rightly, now being cared for by registered children’s nurses in specialist children’s hospitals. However, there are very few ophthalmic-trained nurses working in paediatric areas. This means that ophthalmic patients may end up being cared for by nurses with excellent paediatric experience but not necessarily with the required ophthalmic knowledge and expertise. Children are also often cared for in ophthalmic environments where the ophthalmic nurses may have significant paediatric experience but don’t necessarily possess the same level of paediatric knowledge as their specialist colleagues.

While there are many general ophthalmic textbooks available, this particular text endeavours to bring together the core information required by paediatric nurses who care for ophthalmic patients, as well as ophthalmic nurses who look after children in their practice. Using this book, both these groups of nurses can access useful information from a single comprehensive source.

1.

Working with the child and their family

Janet Marsden and Jilly Bradshaw

This chapter considers the developmental stages of childhood and some of the issues presented to the clinician at each stage. It considers the child within the family, and the legal and practical aspects of parental responsibility. Consent to treatment is discussed – in relation to responsible adults and taking into account both the age and capacity of the child and differences in consent and capacity law across the UK. Specific issues concerning ophthalmic settings are also discussed to enable the clinician to advise and support children and their families, and clinical colleagues, and ensure the provision of an appropriate therapeutic environment.

Defining childhood

The United Nations Convention on the Rights of the Child defines a child as someone under the age of 18. Although this is aspirational (rather than enforceable), it reflects accepted practice in many areas of the world. In the UK, the age of majority is 18 (except in Scotland, where it is 16). The UK is a signatory to the Council of Europe Declaration on Child-friendly Healthcare (2011), which is based on a model of service delivery identified within the UN convention. The UK ratified this convention in 1991 with reservations, and finally agreed to the convention in 2008. One of the key outcomes of the Children and Young People’s Health Outcomes Forum, which reported in 2012, is that children and young people and their families should be at the heart of what happens. Where individual children and their families take this central position, health outcomes are better.

The child and the hospital

The National Service Framework for Children in Hospital (DH 2003) set standards that apply to every department and service within any hospital that delivers care to children and young people. In terms of the quality and safety of care, it states that ‘children and young people should receive appropriate high quality, evidence-based hospital care developed through clinical governance and delivered by staff who have the right set of skills’ (p. 9). It goes on to state that staff treating and caring for children should have the education, training, knowledge and skills required to provide this care.

Clearly, it is hugely important that registered children’s nurses should be involved in the perioperative care of children with eye problems. However, the ophthalmic nursing skills required cannot be underestimated. As nurses qualified in both areas are somewhat rare, effective collaboration between paediatric and ophthalmic clinicians is required to ensure that the child’s ophthalmic care is not compromised while they are being cared for in an appropriate paediatric area.

Children are most often cared for in general and specialist ophthalmic outpatient areas, where the skills of a paediatric nurse would, for the most part, be under-utilised. In these situations, it is arguably more important that the ophthalmic specialist nurse is available to work with the child and their family to achieve the best ophthalmic outcomes. Yet paediatric nursing input in these areas can also be hugely beneficial to the child’s experience and can help to prevent the development of lasting anxiety about hospital environments.

The ophthalmic nurse clearly needs some specialist skills in terms of working with children and their families. However, most children are likely to be accompanied at all times by their parents or main carers, who know them best and upon whom they depend for their emotional and physical well-being. Ophthalmic nurses must have the skills to work as part of a team (which includes the family and the child), listening and responding to cues from parents and using their ophthalmic nursing skills and knowledge to best advantage. A paediatric ophthalmic nursing competence framework is available, developed by the RCN Ophthalmic Nursing Forum (RCN 2012), and this is widely used to develop and demonstrate competence in this area.

The developmental stages of the child

Birth to 12 months

This is a period of enormous growth and development, beginning with a completely helpless infant (weighing an average of 3.5kg) and ending with a child who is beginning to take a few steps, say a couple of words and eat solid food. It is a period of developing attachment and trust and the child/ carer bond is hugely important and very strong. Recognising developmental milestones is key to adapting care to children in this age range. It is also vital to recognise that many children develop ‘stranger anxiety’ at around 11 months of age, as this will enable health professionals to adapt their approach to examination, care and treatment

12 months to 2 years

Growing independence is a key feature of this age range, with negativity as a feature of growing autonomy. ‘NO’ is a very common word! Toddlers are egocentric and feel that they are the centre of their world. They are not able to understand any other point of view but their own and may feel that they are responsible for things that are actually outside their control. Verbal skills are limited and the child will not be able to express themselves so they may act out fear, upset and anxiety.

The pre-school child

Interacting with the pre-school child is much easier than with a toddler. Many pre-school children are outgoing and unafraid as long as they know what is going to happen and they do not lose contact with their parent or carer. Communication skills are getting better at this stage, and the child often understands explanations, especially when accompanied by pictures or models and dolls with which the child can interact. Encouraging the child to help teddy to do things first can instil confidence. Praise and encouragement are useful tools.

As memory and imagination are developing rapidly in this phase of childhood, fact and fantasy can become mixed up and it is vital that communication is direct, clear and unambiguous, using words that cannot be misunderstood – for instance, ‘checking temperature’ rather than ‘taking temperature’ (Barnes & Smart 2003) – and using words that the child normally uses.

Age 5 to adolescence

There is a huge continuum here but the child is often curious and a willing participant in examination and care. They begin to understand cause and effect but their thinking initially remains concrete. This means that they can think logically but they cannot apply that logic to abstract concepts. Clinicians must therefore check the child’s understanding of what has been discussed, perhaps by asking them to paraphrase the information given.

The story from the parent and the child may well be different, with each attributing cause and effect in different ways. The child may seek to avoid telling a complete story if they perceive that it will get them into ‘trouble’. Younger children may also see illness or unpleasant medical procedures as a punishment and may not understand that some of the unpleasantness is necessary, as part of the treatment that will make them feel better.

The adolescent

Physical, emotional and cognitive growth characterise this period of development. Increasing independence from carers and family, and increasing dependence on friends and peer group, are normal. The adolescent will be trying to establish their own identity by testing boundaries and experimenting. They are capable of abstract thought and will have their own opinions about health and illness.

Any management will have to be negotiated rather than stated, and the older adolescent is likely to prefer private consultation and treatment, often without parental presence. Nevertheless, separation from parents and peers is still likely to promote anxiety. One could ask the adolescent to give their permission for the parent or guardian to be present but the adolescent has the right to say no. If it is felt to be important that the parent is present, this may have to be negotiated with the adolescent patient, as well as explaining why it is necessary. Boundaries can be set with the patient, about the parent’s presence, if this is helpful to them.

It is recognised that adolescents in in-patient settings should be cared for in discrete areas and with their peer group, rather than with younger children. Their needs are entirely different from those of younger children. Allowing friends to visit and healthcare staff being aware of their stage of development will help to keep things as ‘normal’ as possible for them. It is very important to adolescents not to look different from their peer group and this may need to be taken into account when planning treatment.

The child and their family

Children and young people need to be in control of their own health and well-being. They must therefore be involved in the process of their care, as far as is appropriate for the individual child. Many children are capable of giving informed consent, as long as they are given information and made aware of the particular issues, in an appropriate way for their age, stage, knowledge, life experience and culture (DH 2003, DH 2012).

If the child is too young, or if they have extra needs that limit their ability to participate in decision making, their parents or carers must have an opportunity to express their views and opinions. It is essential that the voices of parents and carers are heard, as well as (but not instead of) the voices of their children (DH 2012).

Giving clear information in a way that is appropriate to the individual child, to aid understanding and minimise anxiety, promotes confidence and trust in the staff, and lessens children’s feelings of powerlessness and loss of control.

Pre-school children often feel vulnerable and traumatised when separated from their parents; and the parents play a vital role in enabling examination and effective care and treatment, particularly as they know their child better than anyone else.

Clinical staff should appreciate the natural anxiety and fear experienced by all parents coming into hospital with their child, however minor the reason may seem. They should also remember the crucial importance to the child of having the parent present. This alliance between nursing staff and parents is vital. Good verbal and written communication is essential to avoid misunderstandings between parents and nurses regarding expectations about the care being given to their child.

Parents and guardians

It is important to recognise who may have parental responsibility for a child. It is also extremely important to identify the adult who is accompanying the child when they attend clinical services and ascertain whether they have parental responsibility. This will ensure that decisions made for, or with, the child are made by a person with the capability and authority to make them. Only someone with parental responsibility – or authorisation from a parent – can consent to treatment in children who lack capacity, except in an emergency.

The concept of ‘parental responsibility’ was first defined in the Children Act 1989. There is no difference in law between mothers and fathers. Either parent may give consent. However, where parents are separated, it is prudent to ensure that both parents agree. Where there is disagreement, mediation may be needed to ensure that there is