Children with a chronic illness face a range of extra stresses and practical demands not encountered by their peers. In the specific case of arthritis this often includes episodes of pain, fatigue and mobility problems. Sometimes they are left without enough energy to participate in activities, or they need to attend hospital appointments and do physiotherapy. Their parents, siblings and extended family also report changes for themselves, worries and emotional reactions. Much research has focused on the ‘psychopathology’ associated with chronic illness. While certain emotional, behavioural and educational problems do occur is also important to recognise the positive changes children and families report.
Many children (the affected child and siblings) mention that they have gained a greater sense of empathy for and understanding of other people and their problems. Children appreciate the extra presents and attention they receive when they are unwell and delight in the special events they are sometimes involved in. It seems that although sometimes missing significant amounts of school time many children and young adults with arthritis do at least as well as their siblings or peer group in examinations and in higher education. Parents sometimes find they gain extra skills and knowledge because the situation forces them to deal with professional people and organisations in a way they have never had to before. Some couples and families describe becoming closer and learning to value the things that really matter in life.
By mentioning some of the difficulties commonly experienced, I hope it will help children and families to recognise their own situations and reactions. They will see that they are not unusual or less able to cope than other people in the same situation.
Certain problems seem to be more likely to emerge at particular stages.
In the pre-school years, normal behaviour problems such as those around sleeping, eating, toileting and tantrums may be exacerbated by the demands of the illness and treatment regimes. Parents and professionals have more trouble interpreting difficult behaviour. For example if the child is waking several times in a night, is it because they have come to expect a cuddle and to be allowed into their parent’s bed, or are they in pain? Often the picture does not become clear until a later date. Parents may end up placing fewer demands on and being less strict with their unwell pre-schooler than with their other children. Alternatively they may be equally strict, impose punishments and later when it emerges that the child was unwell or in pain, feel exceptionally guilty.
In the middle school years children become more preoccupied with their own social relationships and learn more about friendships, rules and socially acceptable behaviour. They gain a sense of competence and self esteem through successful activities, for example acquiring sports skills or constructing dolls houses and aeroplanes. Opportunities to participate in such activities may be restricted by illness and consequently the child has less opportunities to achieve these important developmental skills.
Fears about medical procedures may cause problems in managing events such as blood tests. Problems about compliance with physiotherapy and taking medication regularly emerge.
It seems that for children with a chronic illness many ‘adolescent’issues emerge well before puberty. Developing cognitive skills means that the child is more able to consider a range of possibilities and to think of the future. They may need a different level of information and involvement in treatment decision making.
We commonly think of adolescence as a time to develop a positive image of self and to develop some kind of independence in thought and activities. The adolescent’s physical appearance may take on a new importance to them and they may become very distressed by the puffiness associated with steroid medication. A lack of mobility or self care skills may mean that the adolescent remains more dependent on adults than their peers are. A new diagnosis in adolescence may force the young person to re-evaluate their whole concept of themselves and they may have to develop alternative ways to be active, independent and successful.
Parents often report facing dilemmas about how much to demand of their child and how often to make concessions to the illness. They not only have to provide emotional and physical support for their child, but also find they have strong and varied reactions to their child’s situation. They also face increased physical demands, for example when a previously independent child again needs help with walking or managing clothes. Sometimes parent and child find themselves tied back into a stage of development more appropriate to the parenting of a younger child.
Couples may find their relationship suffers, partly because of the new worries and practical demands. Sometimes decisions that need to be made and the extra tasks that must be undertaken highlight differences or resentments that are already a part of their relationship.
Healthy siblings often complain about a lack of attention and that they miss out on gifts and special time. Some have greater requirements placed on them, i.e. to help with tasks or to avoid hurting their sibling. They may resent having to stay with friends and family when their sibling is hospitalised. Occasionally siblings receive teasing or take on a protective role for their sibling at school. Sometimes they have their own fears that the condition is contagious or inherited and that they too will become ill.
Many of the problems mentioned here may seem minor or relatively unimportant in the context of a serious physical illness. However when a child and family are already managing a daily load of anxiety, pain and treatment requirements even small things can take on great significance. Emotional issues can interfere with good family relationships, with good working relationships with the medical team and with optimal medical treatment. There are times when it may be useful to seek help from friends, family, support groups or mental health professionals.
Growing up with a Chronic Disease, The Impact on Children and their Families by Christine Eiser. Jessica Kingsley Publishers, 1993
Dr. Simmons, Clinical Psychologist, Sheffield Children’s Hospital