Caring for a chronically ill child: the bigger picture

This article is part of a monthly series from members of the GPs Down Under (GPDU) Facebook group, a not-for-profit GP community-led group with over 6000 members, that is based on GP-led learning, peer support and GP advocacy. This is the second of a two-part series on chronic illness in children. Part 1 can be found here.

“The destination and map I had used to navigate before was no longer useful … I needed to think differently and construct new perceptions of my relationship to the world”

AS doctors, we care for children and their families over time. When families experience a child’s chronic illness, there are deep and long-lasting challenges, not just to the child who is directly affected but also to their parents and siblings.

In this article, I draw on my own lived experience as the parent of sick children, but also my conversations with other doctor-parents, including my colleagues in the GPDU community, to present some of the collective wisdom we have gained over many lonely and frightening days and nights in tertiary care. I’ve kept the comments general to preserve the anonymity of our children.

Coping

Everyone has an opinion on how well a parent copes. It can be part of the standard assessment of the family during paediatric visits, so it is helpful to consider what coping actually means. It is highly confronting to be seen as someone who isn’t coping, should be coping more effectively, or is labelled as having acopia. Parents and siblings also cope differently and may need support with tensions and conflict in the family. It is not unusual for relationships to break down in the wake of serious childhood illness.

I have summarised the stages of coping in Box 1.

Parents need a good understanding of the illness, problem-solving skills, and appropriate emotional supports in order to cope; if the illness is severe, they may also need strategies just to get through each day. As doctors, we need to support parents in a non-judgemental way: it is easy for parents to feel they are failing on all fronts when a child is seriously ill. The financial, social, psychological and interpersonal burden is high, and parents often need validation as well as practical help. GPs can provide a safe space for parents to share their feelings and seek practical support for the challenges facing their families, including accessing services such as the National Disability Insurance Scheme.

Developmental challenges

Sick children have the same developmental needs as all children, but development may be slowed or arrested by illness. When possible, it is important to continue to offer them the same developmental challenges as their age peers. Hospital schools are part of this, but so is play. It is easy to feel miserable and hopeless as a parent, so it’s helpful to encourage parents to imagine what they would be doing with a healthy child at this age and do it. For young children, this can be challenging, but it can become more difficult to accommodate a child’s needs as they grow up.

Adolescence is a particularly difficult time for chronically ill children. They need to decide how they will incorporate their own sick roles into their emerging identity. Rites of passage can be particularly difficult for parents. For example, when an immunosuppressed 17-year-old decides to spend a gap year in South America, it can be terrifying to consider the infectious diseases risk. Similarly, drug combinations can become tricky in adolescence, particularly for young women considering the oral contraceptive pill or long-acting reversible contraceptives. As a GP, it can be difficult to negotiate these issues, and additionally, the team managing the primary illness may have little working knowledge of common drugs such as oral contraception or travel vaccinations, and thus, it can be difficult to advise a young person appropriately. Even the most risk-averse adolescent may challenge the paediatric team at this point.

It is also understandable that a paediatric team which has seen the young person through multiple medical crises may struggle to feel comfortable with risk taking, but that is the developmental challenge that young people face. Parents can feel “stuck in the middle” trying to minimise harm while respecting an adolescent’s right to choose the course of their life. Adolescent medical units and transition teams are available and helpful, but form another team to manage, more appointments and more relationships to negotiate. Most parents may struggle with these transitions even in healthy young people, but parents of sick children do this while being observed and often judged for their parenting choices.

Then, there are the mental health concerns: eating disorders in patients with diabetes, anxiety in young people with chronic illness, and so on. Seeking unemployment or disability support benefits is a deeply distressing experience for most people, but the adolescent with a disability often suffers significant shame seeking help. Social workers and transition teams may help, but may also not be sufficiently well staffed to manage this effectively. Many services are unaffordable in the private sector, and the adult hospitals may not necessarily be able to meet the needs of young adults. GPs are critical in this space, assisting young people to make the transition from being a sick child to an adult with a chronic illness. GPs can help them to learn about their illness, answer questions, practise seeing a GP on their own, and articulate their needs.

Educational challenges

Chronically ill children have a hard time at school (here and here). No matter how good the school is, they experience, in the words of one of the kids in my medical community, a “dotted line” or “second-hand” education. Parents often find themselves having to identify important gaps and deficiencies and trying to motivate our children to remedy them. The issues, however, are often around motivation and despair. One child put it like this, “I can keep up or catch up, I don’t have the energy to do both”. Teachers may expect the child to “catch up” by talking with their friends but if they do this in class, they are being disruptive. If they do it in the playground, it’s socially disruptive.

Siblings can be invaluable, if they’re older, in helping a sick child understand what is expected around assignments. Remember that the child is coping with stepping in and out of their peer group, and may have significant social adjustment issues. It may be difficult for these children to participate in team sports, group projects, drama productions, or music groups because of unavoidable absences, and this is tough on the child and their peers. Paediatricians and GPs are in a unique position to discuss this with the family and intercede with schools: it can be critical for a child’s mental health and social and emotional development to assist them with this difficult task.

Existential challenges

A child’s serious illness or death can profoundly disrupt our understanding of our own faith and beliefs. We like to believe that everything happens for a reason, and that we have more control over our destiny than we actually do. It makes us feel secure. People who have not had their world view disrupted by circumstance tend to operate with the “just world theory” that there is some sort of fairness or logic behind misadventure or disadvantage. When a baby is born with a profound disability, or a child dies from a random illness, most of us begin to question everything. The age-old question of why bad things happen to good people has challenged spiritual leaders and philosophers for centuries, so it is understandable that we may question our beliefs and values at this profoundly difficult time.

When communities cannot or do not support families when they need it so deeply, the sense of betrayal is compounded.

Vicarious trauma

Siblings of chronically ill children experience vicarious trauma due to empathic engagement with their traumatised brother or sister. It is important to consider and manage this as well as possible, and to ensure that siblings continue to experience the best love and care the family are able to offer. They need their role as an empathic support to their sibling acknowledged and valued in the family system.

Parents of children with serious illnesses are also often traumatised. They have experienced years of holding their child down for traumatic experiences, surviving crises, and planning for contingencies. They have felt helpless in the wake of this continued trauma, and may well have nightmares, flashbacks and so on. It is important to explain this to them and encourage them to seek appropriate support.

They need space to talk about things that feel shameful. They may also have feelings they don’t like: it is not unusual to resent a sick child, or be angry with them, and this may not sit comfortably with their values as a parent (here and here). A good psychologist or GP can make space for these emotions to be expressed, without judgement. Parents often need someone to remind them that they are doing the very best job they can as parents.

It is profoundly helpful to have space to grieve the losses they have as a parent. In a culture where parenting (and particularly mothering) is held in such unrealistically high esteem, it is hard to find space to honestly express how difficult it is to manage the financial, psychosocial and professional cost of caring. Parents can find the burden of caring can have an impact on their relationship to each other and to the siblings of a sick child (here and here). When a child is very unwell, there is also grief around the child themselves. We grieve the well child with the future they wish they had, and when we deeply empathise with their pain and suffering, we can experience deep vicarious trauma (here, here and here).

Trauma is an inevitable part of a child’s hospitalisation, particularly if that hospitalisation is prolonged. GPs and paediatricians play a unique role in understanding, explaining and supporting the family while they face the marathon of caring for a chronically ill child. Doctors can also encourage sick children to develop into confident and capable adults, with a firm sense of their own identity despite, perhaps, chronic illness.

Louise Stone is a GP with a clinical, research, teaching and policy interest in mental health and doctors’ health. She practises in Canberra.

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.