“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place”.
– Susan Sontag
As doctors, we wield our dual citizenship. We are smoothly bilingual and understand many of the customs, rituals and symbols of the Kingdom of the Sick. We cross borders readily, every day. We translate the language of illness into the language of the well and participate in the rituals of institutions on both sides of the border. In each Kingdom, we have agency; we cross the borders when we choose to and return home when we can.
However, when we become the doctor-parent of a sick child, we become refugees on the other side of the border fence. Our roles become blurred, confusing and traumatic. Our agency can evaporate. If our children are significantly unwell and require prolonged or repeated hospital stays, there are many, many competing challenges. We must learn to straddle “the Kingdom of the Well” and “the Kingdom of the Sick”, parenting within and outside the hospital, meeting the needs of siblings, and retaining a link, however fragile, to our own professional worlds.
In this situation, we are both doctor and parent, but in many ways, we are neither one nor the other. This liminal zone, “betwixt and between” wellness and illness, being a doctor and being a parent, coping and grieving is uncomfortable, uncharted and often traumatic. Maintaining a sense of self for ourselves, as well as for our sick children is harder than it looks. Who are we as we sit beside their bed, instead of standing behind it? Who are our children without their activities, their energy or even their clothes? What does our family look like when we are divided on either side of the border?
Here, I draw on my own lived experience as the parent of sick children, but also my conversations with other doctor-parents, to present some of the collective wisdom we have gained over many lonely and frightening days and nights in tertiary care. Most importantly, I want to break the silence. There are so many places where doctor-parents may not speak. The outside world does not understand. The inside world of hospitals requires strategic silence, to manage the interpersonal challenges of advocacy when we are both outsider and insider simultaneously. This paper is a way of breaking that silence.
Narrative shipwrecks
Children are not supposed to develop chronic illnesses. We have plans and expectations for them. We immunise them, challenge them, nourish and nurture them, and we expect that our efforts will keep them safe. When our children become unwell, it ruptures our sense of our own future and the future of our family.
As doctors, we often plan our futures many years in advance. When these plans collapse under the weight of illness, we lose our place in our own stories. Our lives become fragmented, segmented into “one day at a time” pieces that we struggle to bring together into a meaningful story. Instead of an integrated narrative, we have a “choose your own adventure” path, with multiple contingencies and unknown outcomes, stretching endlessly into a future that seems deeply insecure.
Our previous social networks become strange as friends and colleagues continue their lives in ways that seem increasingly unreal and discordant. Things that used to trouble us, like our child’s performance in the classroom or on the sporting field, cease to seem important, and when our friends start a conversation about their own worries, we feel increasingly disconnected. “What does it matter?” we think, even though we were part of so many similar conversations in the past.
We are surprised that the stories of chronic illness we know well as doctors look very different when we live through them as parents. Something as simple as implementing a drug regimen can be difficult, and we are embarrassed when we miss a dose or draw up the wrong concentration of a medication. In our darkest days, we fear that we will never manage the marathon, and this insecurity is terrifying. We cease to be the expert and instead may feel incompetent and deeply lonely. At the same time, we are often the linchpin in the whole family system, and it can seem like everyone leans on us to explain, support and manage the multiple crises that roll over the family in waves.
It is unsettling that the big, existential questions we manage in medicine become strange and problematic when we live them as parents. How do we answer our children when they ask about death? How do we translate the consequences of a chronic illness to our own children? (so what did the doctor mean we he said I’ll need a stoma, Mum?) How assertive are we able to be to the medical team, when we occupy the ambivalent role of “the carer”? We cannot see whether we will resume our work and if we do, how we will accommodate being permanently “on call” for our children in a way we did not predict. Our own identities shift and we realise that we will never be the same doctor again. Or the same parent.
Building the new narrative is like doing repair work on a shipwreck. It is hard, relentless work that requires dogged optimism, relentless stress management and the capacity to create order out of chaos. As one child of a doctor-parent put it “mum can make anything seem normal”. Our children look to us to seek reassurance, and so we incorporate the most extreme situations into our daily narratives, for them and also for us. It’s a difficult, exhausting skill.
Interpersonal challenges
Illness changes relationships. Old social groups no longer meet our needs, while illness support groups bring their own challenges. It is impossible to keep our medical identity hidden for long because it is integral to our story. However, once that identity is known it can be hard to resist the role of being the resident expert in the group. Many of us easily slip into the compassionate role we had trained to develop and find it difficult to get our own needs met when others begin to rely on us.
Perhaps the most painful part of having a sick child is having your social world reorganised. Some people cannot cope with illness and may avoid the family, or offer unhelpful strategies to manage stress. Some offer remedies (“Have you tried dried walnut husks? My cousin’s friend swears by them”) or slogans (“Everything happens for a reason”, “God never gives you anything you can’t handle”) and this can be painful and alienating. Others, perhaps even one of the parents of the child, will desert the family, leaving the remaining family members to carry the burden of care. It helps to understand that some people genuinely lack the experience to know what to do. Some will happily help if asked for something specific. It can also surprise us when relative strangers offer practical help, leave a pot of soup on the doorstep, or carry the pram up the railway stairs.
It is also important to maintain dual citizenship. As parents, one of our key responsibilities is to hold on to our child’s identity as a person, and that means maintaining links with their social world outside. To do so, we need to keep our own links with the outside world alive, for the sick child, their siblings and ourselves. It is, therefore, important to resist the pull of disease communities. When a parent becomes over-invested in the disease identity their lives can become dominated by awareness campaigns and fundraising (particularly when public hospitals are so clearly desperate for adequate funding). This can mean less time to maintain links with the community outside the hospital.
A sick child also needs to maintain their dual citizenship. They cannot do so if they are not fluent in the language, customs and rituals of their enforced community. Unfortunately, it is often the case that we parents experience the slightly judgemental comment “s/he is very medicalised isn’t s/he?” when our child uses a technical term, asks their own questions or knows the names of their medications. It is not helpful to place parents in this unwinnable position, but we often inhabit that space. Our responsibility, as parents, is to prepare our children to be independent. This is not an easy process for the child, the parent or the medical team, and, as a doctor, it can lead to all sorts of awkward moments when your adolescent alienates the team with a strident comment or disagrees loudly with the opinion of a colleague. Nevertheless, we must give them control of their lives, their bodies and the management of their illnesses.
Professional challenges
Being a doctor changes the therapeutic relationship with the treating team. It shouldn’t, but it does. It is natural for the team to become defensive, but it is also understandable that they try to demonstrate respect by assuming you know more than you do. As a GP, I must confess I didn’t know what to say when a tertiary specialist began a sentence “as you would know from your understanding of the anti-leprous agents…” Unsurprisingly, I’ve never treated leprosy. Other doctors over-simplify things, trying to treat you like a “normal” patient and this can be just as frustrating.
As doctor-parents, we are very conscious of the needs of the team and work hard not to be seen as difficult but our questions can be perceived as challenges, instead of the genuine questions they are. We are also embarrassed by our inability to take information in or reason things out. We are surprised how good it feels when a patriarchal doctor makes a difficult decision for us when we obviously can’t.
Despite our familiarity with hospitals, it is a shock to see how deeply dysfunctional they can be. In our own work, we strive to be patient-centred. Our hospitals tell us they place great value on patient-centredness, and we know each individual health professional does their best. So it is an enormous shock when we experience medicine “behind the scenes” with all its chaos, waste and organisational failure. Perhaps the most obvious nightmare is the question of cannulas. Children with chronic illnesses often have terrible veins, yet it seems impossible for any hospital to bypass the nurse, intern and registrar attempts before they defer to the anaesthetist you know is necessary. It is deeply challenging to advocate for your child when the same sequence occurs on the second and third resite. In these circumstances, it is hard to retain good working relationships with everyone involved. We struggle to be a good parent, and not be perceived as difficult because we know that hampers good care. But we are just as frustrated and angry as the average patient, particularly when we know what good care can be. Advocacy is never easy.
Having your own GP is critical, so they can play bad cop and be the difficult doctor asking the questions you can’t seem to get answered. The non-medical parent can also ask the hard questions, as they are less likely to trigger a defensive reaction, particularly in junior staff.
Doctor-parents will, at some point, consider returning to the medical workforce. This is difficult and can involve a shift in career direction to incorporate the flexibility needed. After such a long period of time training, there can be profound grief and loss if your chosen career is no longer possible. There also can be challenges in managing medical work. It is particularly challenging to see patients who share your child’s illness or circumstances. Colleagues play a critical role in helping you decide whether to pass such patients on or manage them mindfully yourself.
Existential challenges
A child’s serious illness or death can disrupt our understanding of faith and our own beliefs. It is human nature to believe that we have control over our future and that our choices and behaviours influence outcomes. We know there is no logic or justice or fairness behind illness. Nevertheless, it is natural to question why our child is suffering. People who have not had their worldview disrupted by circumstance tend to operate with the just world theory – the idea that we earn our (mis)fortunes. We think we have abandoned this idea long ago, and yet it rears its head in the face of profound loss. The question of why bad things happen to good people becomes important, and it is easy to blame ourselves for the most trivial lapse in our unrelenting standards. When a baby is born with a disability, or a child dies from a random illness, we begin to question everything. It is understandable that our beliefs and values are shaken.
One of these core values centres around our membership of multiple communities. When our community cannot, or does not, support us just when we need them, there is a sense of betrayal. Medicine is one such community. It is hard when our colleagues let us down, treat us with disrespect or ignore the needs of our children. It is even harder when we realise hospitals can be unsafe. We expect support, and yet we are often in a position where we need to maintain relentless vigilance to secure the safety of our children. This is, of course, not intentional. It is the result of chaotic structures in hospitals, chronic underfunding of services and occasionally ignorance. Nevertheless, the trauma of our child’s illness is exacerbated by a deep sense of betrayal.
Educational challenges
In the words of one of the chronically ill children I care for, school provides a “dotted line” or “second-hand” education. The pandemic has actually helped. It has normalised the process of moving in and out of physical attendance. No matter how good the school, parents are co-opted as primary educators, and more importantly, are needed to stitch together the fragmentary education children receive. We also become the chief cheerleaders. It is difficult to maintain motivation without a peer group, and it is demoralising when educational attainment plummets in the wake of serious illness.
One child of a doctor-parent put it like this “I can keep up, or catch up, I don’t have the energy to do both”. As parents, it’s easy to feel you can never get it right with school teachers. Some will tell you that you are pushing your child too hard. Others will tell you that your expectations are too low. You will fluctuate, never sure if you are doing too much or too little.
Older siblings, friends or other family members can be invaluable in helping your child interpret the requirements of educational tasks. Hospital schools can also help, but they have limited reach for children who are in hospital intermittently. School is full of jargon and teaching methods change. We are often surprised that we have difficulty deciphering the code of an assignment.
At the same time, your child is coping with stepping in and out of their peer group and may have significant social adjustment issues. Your child may be expected to catch up by talking with their friends. If they do this in class, they are being disruptive. If they do it in the playground it’s socially disruptive.
It may be difficult for these children to participate in team sports, group projects, drama productions, or music groups because of unavoidable absences. This is tough on them and their peers. It also makes it difficult to maintain family rules. I remember our rule that joining a team means committing to that team for at least a year. This is impossible when a child is in and out of hospital. Expectations are often lowered, rules are flexed. As a result, your child may not learn the skills of collaboration, organisation, social interaction or emotional self-management in the same way. Special consideration may be normalised, and this carries consequences for their self-esteem and educational skill development.
Developmental challenges
All children have the same development needs, but development may be slowed or arrested by illness. We know that distraction, connection and a sense of self-efficacy are important when things are inherently unfixable. Play can achieve all of these outcomes.
It is important to continue to offer the same developmental challenges you would offer at home. Hospitals may have play therapists and hospital schools, but as a parent, there are long, lonely hours confined to a room. As a healthcare worker, you have the advantage of at least a passing acquaintance with the expected developmental milestones of children.
When you feel miserable and hopeless as a parent, it can help to imagine what you’d be doing with a well-child at this age and then do it. Libraries will often deliver book bags. Hospital libraries in children’s hospitals have age-appropriate books. They can also supply educational materials on challenging topics like discrimination, illness and death.
LEGO can be washed in a pillowcase. Sheets can be placed on the floor for play dough, finger painting, and doll houses (great for playing through what’s going on). It’s easy to use screens for really sick children when they have no energy for normal play, but you also can make things with them and let them choose colours or materials. When relatives ask what they can get, suggest craft materials, colour by numbers, card games, drawing materials, plenty of paper for visiting kids to make cards from, and so on. It can be too much to go shopping for supplies when you are overwhelmed with medical appointments.
Adolescence is a particularly hard time for everyone, including parents. Chronically ill children have the added burden of social isolation. The developmental task of individuating is almost impossible in an institution, where parents are required (by law) to manage consent. Parents are also necessary in hospitals. There are not enough staff to manage day-to-day caring, and so parents may find themselves performing developmentally inappropriate tasks with their adolescents such as feeding or toileting.
Young people need to decide how to incorporate their own sick role into their emerging identity, especially if the illness is disfiguring or restricts engagement with peers. Traditional rites of passage are challenging for a doctor-parent. Teens with diabetes manipulate their insulin regime to manage weight gain. Teens with neurological conditions will want to drive, and those who are immunosuppressed will decide to spend a gap year volunteering in a remote community in Africa. Dangerous sports, experimentation with drugs and alcohol, and tattoos become a risk.
As a GP, I am often asked to chat about contraception with young people who have complex needs. The paediatric team, particularly in rare diseases, who manage the primary illness may have little working knowledge of simple things like oral contraception, travel vaccinations or even the effects of alcohol, so it may be difficult to advise the young person. Even the most risk-averse adolescent can challenge the team at this point.
The paediatric team who has seen the young person through multiple medical crises may struggle to feel comfortable with risk-taking, but it is the developmental challenge that young people face. As doctor-parents, it is easy to 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 helpful but become another team to manage with more appointments and more relationships to negotiate. Adolescents are often “over” being medicalised, and may resist well-meaning attempts to manage their illness.
As doctor-parents, we become exhausted after years of trying to maintain a delicate balance between the needs of the child and the needs of the team. The team need to ensure good care is delivered. The parent needs to support their child’s growing sense of self and self-efficacy. There will be tension. Young people and teens are supposed to test boundaries. This can be difficult for parents even without the added burden of illness. However, being the parent of a sick child means being observed and potentially judged for the choices you make, and the behaviour of your adolescent. Managing the transition from parental care to self-care is hard. Phrases like “It’s time for a parentectomy” are not helpful when, as a parent, you are struggling hard to manage these transitions thoughtfully. It can be excruciating to watch a parent try to get a grunting teen to talk to the paediatrician, but it needs to happen if they are to successfully transition to self-management. Parents need support at this time. Doctor-parents, with one eye on their child, and another on their colleague who is being treated with disrespect by their teenager, need considerable understanding and reassurance.
Mental illness often emerges at this age, and is made more complex by the experience of medical trauma. Standard youth mental health services are unlikely to manage this complexity. Young people may not feel comfortable seeking support in a hospital, particularly when they are trying to distance themselves from their own disease. Seeking unemployment or disability support benefits is a deeply distressing experience for most people, but the adolescent with a disability often suffers significant shame looking for help.
Social workers and transition teams help, but may also not be staffed well enough to manage this effectively. The transition to adult care can be disruptive, and young people can disengage completely at this time.
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.
The tasks of coping:
Appraisal: understanding the situation and your own resources so you can mobilise help and support for your child
Problem-solving: the ability to break down problems into achievable goals, and then implement strategies to manage them
Emotion-focused coping: the ability to seek and receive emotional support from others and/or to implement strategies to manage the emotional load of parenting a sick child.
Meaning-focussed coping: implementing strategies to survive day to day. This may involve the following elements.
- Positive events that provide a distraction from everyday care: “breathers” (eg clown doctors, toys, days out of hospital)
- Positive events that enhance self-esteem and feelings of effectiveness: “sustainers” (eg hospital schooling, craft activities)
- Positive events in which people felt connected and cared about: “restorers” (eg organizing visitors, constructing memory books with photographs, connecting to classmates using technology when in hospital)
Trauma
You cannot immunise children against the psychological trauma of illness. You can mitigate the risk, but not remove it. For a child, particularly a preschool child, trauma is trauma. It doesn’t matter that the trauma is controlled and is essential if they are to have a better life (or to live at all). From the child’s perspective, adults that they trusted participated in painful procedures and failed to protect them. When children are young, particularly when they are preverbal, this trauma is encoded neurologically but may not be remembered. Traumatised children do not lay down memory in the same way, and may not have access to memories of these traumatic experiences.
We can all reduce harm, by managing the emotional environment of healthcare, empowering our children, comforting and contextualising. However, children can carry PTSD symptoms into adulthood despite the best of care. They may need to revisit their experiences repeatedly, as they mature and deepen their understanding. Consultation liaison psychiatrists and health psychologists can be very helpful in this space, but it is important to wait until your child is ready to engage. GPs can be a helpful bridge because they operate outside the hospital network but can understand and debrief traumatic experiences. They can also link young people with appropriate services in the community.
It is hard to watch and feel helpless in the wake of a child’s trauma. But it is essential to be realistic: you have not failed because your child is anxious or angry or distressed.
Complex PTSD
Complex PTSD is a disorder associated with early trauma. It consists of clusters of symptoms.
Alteration in the regulation of affective impulses, including difficulty with modulation of anger and being self-destructive
Alteration in attention and consciousness leading to amnesia and dissociative episodes and depersonalization
Alteration in self-perception, such as a chronic sense of guilt and responsibility, feeling chronically ashamed
Alteration in relationships with others, such as not being able to trust, not being able to feel intimate with people
Somatization – feeling symptoms on a somatic level for which no medical explanations can be found
Alteration in systems of meaning – loss of sustaining beliefs, and/or loss of a sense of a secure future
The cascade of invalidation and the erosion of trust
Young people with chronic illness can get a reputation for being difficult. So can you. Health professionals can be surprisingly judgemental, and when a child matures from being a poor sick child to a prickly, non-compliant adolescent who disagrees with the team and is openly sceptical about treatment options. Their healthcare experiences can become unhelpful, counterproductive or even harmful. At worst, young people with chronic illness experience chronic invalidation and this leads to an erosion of trust. This is particularly obvious when there is chronic pain, there are medically unexplained symptoms, mental illness or when the young person experiences layers of disprivilege (for example, being female, or living with a disability). Adolescents with a reputation receive poorer healthcare and can feel abandoned by the healthcare system. Understandably, they disengage and this earns them the label of non-compliance, further cementing their reputation as difficult patients.
As a doctor-parent, we are in an unwinnable position. If we advocate too hard for our child, we become the difficult parent and have less influence in the system. If we do not, we understand the consequences of disengagement, including the risk of complications and worsening health. Sometimes, GPs can assist in brokering more healthy relationships, but it can be helpful to introduce the child to advocates who can help effectively navigate care.
Managing your own trauma
Caring for a chronically ill child can carry significant trauma for the parent. Years of observing or assisting with painful procedures, living with our own mistakes (real or perceived), chronic exhaustion, endless contingency planning and the emotional fallout from failed relationships can lead to significant physical and emotional ill-health. Parents can live with typical PTSD symptoms, with flashbacks, nightmares, emotional dysregulation and the consequences of unhelpful coping strategies like the overuse of alcohol. Finding support for yourself can be challenging, but it is important to do so outside of the team that cares for your child. Otherwise, your role as an advocate can be compromised.
Your GP should be able to connect you with an appropriate health professional, such as a psychologist, who will not only help you manage difficult feelings, but also problem solve when you are too exhausted to manage this yourself.
You will need space to talk about things that feel shameful. You may have feelings you don’t like: it is understandable that you may resent a sick child, or be angry with them, and this may not sit comfortably with your values as a parent. If you can make space for these emotions to be expressed, without judgement, and then you can deal with them and go back to the relentless job of compassionate parenting. It is easy to feel we are failing on all fronts. At times, it is very important that we have someone to remind us that we are doing the very best we can.
It is profoundly helpful to have space to grieve the losses you 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 impact their relationship to each other and to the siblings of a sick child.
Seeking help
For the parents out there…
It worries me that some of you hesitate to see us because you worry about what we think. When you have a sick child, it can be tempting to avoid bothering your GP, feeling like you ought to be able to cope.
I remember feeling worried, anxious, and too tired to think about why with my kids. I remember many, many parents who are right to be worried and anxious about their kids. I remember sitting in the waiting room and worrying about what my GP will think of me: am I presenting too early, too late, too neurotic, not neurotic enough…
I was lucky enough to have a wonderful GP – several wonderful GPs in fact – and without them one of my children may not have survived. The childcare nurse told me I was worrying unnecessarily. The GP organised an essential acute admission, with a slightly scary air ambulance.
GPs take the time to know the child, when to worry, and when not to worry. Our job is education, not just treatment. We are partners: you know your little one better than I do, but I have seen lots and lots of little ones and can see different patterns. We can be objective when you can’t be anymore. We work together. Every bit of learning we do together gives us both the tools to help your little one grow up strong and healthy.
What do I see when you come in? I see a precious child and a concerned parent. That is all. Believe me, I like seeing parents who want to give their children the best care they can. When you make a mistake or have an accident when you’re exhausted my heart bleeds for you. You’d be unusual if you had no regrets at the end of this parenting journey (if it ever ends). Living with those regrets is part of the job of being a parent. Apologising for your mistakes to your kids teaches them how loving relationships can be repaired. Good enough parenting is important. We let kids climb trees because we know the risk is worth it in building strength, skills and courage. The same could be said for being raised by imperfect parents.
So have courage and see us when you’re worried. You are not wasting my time. Ever. I don’t want you to weigh up what I will think of you. I want to help. It’s my job and it’s a privilege to work with families.
Conclusion
Being a doctor-parent is difficult but you are not alone. Find your own support away from the team who supports your child. Don’t be afraid to seek help through agencies that support doctors in your area. And most importantly, find a way to forgive your own imperfections. Your child is neither a warrior-hero winning their battle against cancer, nor a helpless victim of an unfair and undeserved disease. They have agency, even if they have little control. The key to survival as a doctor-parent is to recognise what you can do to assist them in their journey, and then do that as openly, assertively and warmly as you can.
Some practical strategies
Always pack a pillow or light quilt. Your job is to hold on to the identity of the child as a person, not an organ system. Have markers of who they are – it is much more comfortable. Polar fleece washes well and comes in bright colours and can survive the hospital laundry. If you are staying a while, consider a roll-up mattress topper and pillow for the parents. There is always a premium on pillows in hospital.
Make sure you’re up and dressed early. If you need to advocate to the team (for example, surgeons on their 6AM rounds) you can’t do it dishevelled and in your PJs.
Pack appropriate loungewear that you can sleep in it, and still stand up and look the team in the eye.
Let the registrars’ practice (non-painful) exams with your child if you can. It normalises examinations for them and, if you’re lucky, the registrar may fill you in on what’s in the notes. It also lets your child practice talking to doctors and becoming a bit more expert.
Be exceptionally nice to the nursing staff. A box of mixed tea is always welcome as a thank you. It means that when something goes wrong, you already have a relationship in place. It’s easier to go to the front desk and fix things. I do appreciate nurses. They are deeply capable and compassionate.
Pack decent coffee and tea, snacks and fruit. Don’t forget BluTac or something similar to hang up drawings and messages.
If you can, alternate adults at the bedside. There is often a gendered layer to this. Men may get marginalised and the siblings can miss out on Mum and resent the sick child. Staff will often comment how wonderful Dad is to stay but look slightly miffed when Mum goes home – to mind the other children
If you can, appoint an adult other than you to be available to siblings. Your other children may not want to upset you by asking questions about what is worrying them. Your other person may agree to be a liaison person giving updates as well as saving you from having to go through things a million times. Authorise them at school and in sporting groups and music groups in case they need to act in loco parentis. Siblings experience vicarious trauma. Consider and manage this as best you can. Ensure they continue to experience the best love and care you are able to offer. Stories can help, but brothers and sisters need help acting as empathic supports for a sibling who may not be able to provide the same in return. This role needs to be acknowledged and valued.
Get an excellent GP. They can ask the hard questions of the team, so you don’t need to. Doctors can get defensive when other doctors ask hard questions. Get your own GP and support outside of your child’s team. You need to be able to be strong in the team and vulnerable somewhere else.
Get a fitting so you can screw a drip stand to the pram. Wheeling a pram and a drip stand is impossible.
Forgive yourself. Accidents happen, illnesses happen, and things happen for no reason. Some things are not fixable. You can’t immunise your child against this sort of trauma. You can only do your best.
Pets matter – involve them as much as possible.
Give up your expectation that you will limit screen time. Children (and especially adolescents) need to connect with their peers in any way they can and need to maintain a sense of agency. This probably means allowing more screen time and gaming than you would normally. If it makes you feel better, my daughter did REALLY well in film studies in senior high school, because she watched so much television in hospital. She is also a master of social media.
Make friends with a librarian. You will need books to read in the hospital with your child, books to explain situations and procedures, and books to occupy you during the long hours when you can’t sleep. Don’t aim for anything too taxing.
Have a list of things people can do for you and your family. They might supply food (good coffee and delicious), activities (colouring books, puzzle books, or craft materials) or conversation. They may be able to drop off a meal to whoever is at home with the siblings. They may offer to help siblings with homework, or they may just send an email to check-in. Learn to respond to the question “Is there anything I can do?” with a concrete task.
Get outside. Sunlight is important and does wonders for our mental health. Exercise also helps.Even a short walk can make a difference.
Remember to keep your child safe. Unlike home, hospital wards are very open. If you bring in your own medications or have sharp objects like scissors, remember to keep them somewhere safe. Accidents can happen, even in hospital.
Take every opportunity to learn. If you need to manage a physiotherapy regime, or inject medication, practice with the nurses. It is easier to master things in hospital than at home.
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