Caring for Cystic Fibrosis in Siblings

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It is difficult enough to manage differences between siblings when you have two or more children with cystic fibrosis in the family, but this becomes even harder when you have a child with a long-term illness. Caring for a child with a long-term illness usually involves additional demands on your resources, both practical and emotional, and this can have a knock-on effect on other children in the family. All siblings have slightly different needs, so you have to adjust your parenting style to manage these differences, but it is particularly difficult to juggle responding to the needs of your well child or children when the needs of an unwell child may sometimes have to take priority.

Most parents start with the ideal of wanting to be able to share out their attention or love equally between siblings and trying to be fair to each child. Many adults can recall situations from their own childhood when they felt a parent showed favouritism and times when they competed fiercely with their brother or sister for their parent’s attention. This sort of rivalry can be very intense, so parents often do their best to try and prevent it from happening with their own children. But if one of your children does have a higher level of dependency on you because of their illness, then they will need a greater share of the care you can provide, and this can be difficult to manage within a family. All your children will want your attention, and well siblings don’t always understand why they are not being put first.

The realisation that you cannot meet the needs of one child, because you are already occupied with your unwell child who has to take priority, can cause a tremendous amount of guilt. While rationally you know you can’t be in two places at once, this sense of being ‘torn in half’ can be hard emotionally. If one of your own children accuses you of giving your unwell child more attention than them or neglecting them, this can be very hurtful.

Although it is important to try and recognise the needs of well siblings as much as you can, this chapter is not intended to make you feel guilty about how siblings may be affected; it is intended to help you find some ways to do the best you can, under the circumstances, and to help you to feel a sense of satisfaction that you are a ‘good enough’ parent. Almost all parents strive for perfection despite this being an impossible goal. Parents of children with a long-term illness often have to strive more than other parents because of the physical and emotional demands that the illness places on them. So, for that reason, parents of children with a long-term illness should be supported to feel a sense of personal achievement – you really do go that extra mile.

Young Children – The Impact of Separation

The impact of living with a sibling with a physical health condition will depend on the age and developmental stage of a well child. Very young children will particularly miss the physical presence of a parent, and find separations (for example, for hospital stays) very difficult. It is harder for them to understand timescales, so it can be more difficult to explain to them and be able to reassure them about when you will be back.

Try to ensure the sibling has a familiar routine and regular substitute carers if you are not able to be there. Routines help provide some security in the face of other things that can’t be controlled. If you have family members who can step in as carers, this can be very helpful especially if they are able to come and stay at your home so that they fit into the sibling’s normal routine. Many other people – for example, your friends or parents of your children’s friends – enjoy being able to offer help in this situation, so although it sometimes feels uncomfortable to ask for help, remember that some people might actually be very happy to provide this. For example, arranging an afternoon with a close friend’s family can actually be a great way of both distracting your child and helping them to have a positive time, even if you can’t be there yourself.

If the child is old enough, you can prepare them for any planned admissions or absences by using a visual calendar to help them understand what will be happening and who will be looking after them. They may find it hard to hold in mind what is happening each day and how long the separation will be, but seeing it in pictures will help them to make sense of any separation. See example on page 179.

Remember that while children are very young, they do accept things as normal if they are normal in their family. If something happens consistently, such as their brother or sister’s regular treatment regime, then that does seem normal to them and they will accept it as part of their day-to-day life. At a young age, they are not able to make comparisons and therefore don’t realise that this is unusual. Only later, once they are at school and get used to visiting other families, do they begin to realise that this may be unusual compared to other children or families.

One strategy that some parents find helpful as a means of sharing out attention is to have a regular play session focused on your well child or children; for example, playing something they have chosen. It is often suggested that this should be fifteen minutes a day, but this may be hard to achieve. Even if you can’t spend as much time as that with each child, it is helpful to spend a few minutes each day or a longer session two or three times a week. It is not just the amount of time you spend with them that is important, it is having the focus just on them, and on making this ‘their’ time to choose what they want to do. You don’t necessarily have to do a special activity – just cuddling up together looking at a picture book is fine. You may find that initially it is hard for the child to end these sessions, and they become upset or plead for more time, but once you have got a routine, then they will get used to the idea of ‘their’ time and you can both enjoy it.

Older Children – Staying in Touch

As children get older, even if they can manage without you there physically temporarily, they will miss your attention and interest because they want to share their world with you; for example, they will want to tell you about what is happening at school or show you new skills they have learned.

As they get older, find ways of keeping each other updated, preferably in a format the sibling uses anyway; for example, via Skype or Facetime, or by sharing messages such as on a family WhatsApp group. This is a way of keeping your child in mind even if you can’t physically be there, by showing you know about what they are doing and care about how it is going. If you find you need to, set reminders on your phone to contact them. Although they may not respond, they will know you have thought about them. This way, a regular catch-up time becomes part of the routine, in the same way as a play session does for younger children.

There can be additional challenges in how older children deal with having a sibling with a long-term illness. As peer relationships become more highly valued, they may increasingly want to be similar to their peers and may begin to resent any differences that they perceive as unfair. They will also begin to realise that their brother or sister is different and will usually ask more questions about why this is, or why they need the treatment that they do. This can also lead to more situations in which they feel resentful of any restrictions placed on them because of their sibling’s condition. Remember that you can use some of the ideas discussed in Chapter 3 about children’s understanding of illness for siblings as well, as their understanding of their brother or sister’s illness will follow a similar progression through the developmental stages described in more detail in that chapter.

Witnessing Distress Due to Illness

Case Study – Sam (6 years old) and Jonny (8 years old)

Sam has asthma which has been getting worse and one night he has a severe asthma attack which does not seem to respond to the usual medication. His parents are both there and decide to call an ambulance. Just as the ambulance arrives, his older brother Jonny wakes up and, in a half-awake state, sees Sam, who is now panicking, being taken away in the ambulance with his mother.

Over the next few hours, his dad is in constant text contact with his mum, but it is confusing and hard to find out exactly what is going on. Jonny is sent back to bed but can’t sleep and lies awake worrying.

Although Sam recovers well after this episode, Jonny remains anxious whenever he witnesses Sam getting breathless or when his asthma gets worse. He doesn’t like being left with Sam for any length of time, as he fears he won’t know what to do if something goes wrong.

Siblings of a child with a physical health condition can witness some very distressing episodes – for example, if their brother or sister is in pain or has to undergo difficult treatments because of their condition – and they will then need additional comfort and reassurance at these times. Their empathy with their brother or sister means they often feel pain or distress indirectly themselves and therefore do need to be comforted too. This can also be frightening for them, particularly if the situation feels ‘out of control’; for example, if their parents also seem unsure what to do or are scared.

After a frightening event such as Sam and Jonny experienced, it can take a while to build up confidence again, and it is important to review any treatment plan with your child’s medical team to understand what happened and to make sure the treatment plan is effective. If a sibling has witnessed the frightening event, but has not been part of the recovery (and the subsequent discussion about what happened and how the treatment plan should change), they can be left with uncertainties that need to be talked about and worked on, to help them build up confidence again. It is helpful to share the new treatment plan with a sibling, to show them what they should do if they are worried themselves, and also to give them a chance to talk about and understand what happened. It also reassures siblings to see that parents do have a plan and know what to do, and that siblings are not responsible for keeping their brother or sister safe.

Increased Independence

Studies show that brothers and sisters of children with a physical health condition often develop a higher level of maturity and independence compared to other children at the same developmental stage. For example, they may become involved in some caring tasks, even if it is something relatively minor, such as asking them to fetch something for you or to help distract a younger child by showing them a toy. They can quickly learn that they need to do more for themselves, such as help themselves to a drink, rather than waiting for you to get it for them. While there is a positive side to this increased independence, they do also need to have the opportunity to be a child, and their frustration and resentment may be expressed in various ways.

Case Study – Jenny (7 years old) and Kate (10 years old)

Jenny and Kate are sisters, and Kate has recently been diagnosed with Crohn’s disease and has episodes of very bad stomach pains. Both girls are at a neighbour’s house playing with friends when Kate starts to feel unwell. She is quite a shy girl who doesn’t like to draw attention to herself but can’t help occasionally putting her hand to her tummy when it hurts. Jenny notices this and, concerned for Kate, asks her friend’s mum to call their mum because Kate is feeling unwell. Jenny is a bit upset but reassured when their mum comes to pick them up.

Some children react by becoming exceptionally ‘good’ and ‘helpful’, sensing the level of stress their parents are feeling and not wanting to upset them any further. This is a way of the sibling ‘sharing’ some of the care for the child and taking some responsibility themselves for managing the stress they can sense their parent is experiencing. This can result in them experiencing mixed or conflicting feelings – they feel upset or sad themselves, but they also want to make things better and cover up these feelings in order to either please other people or try and reduce the level of stress that they have realised others are feeling.

It can be helpful to give children permission to acknowledge these conflicting feelings and help them find a way of expressing them safely. First, aim to help them understand their emotions by labelling the feeling itself and by showing empathy for what they feel, then reflect this back to them to check if it is accurate. For example, ‘It sounds to me like you are being brave about it, but part of you is feeling very sad because you can’t do what you want to do. That’s hard to be feeling like that – it’s like you have mixed-up feelings.’

It can also be important to set up fun times when well children can be ‘childish’ and do something that is deliberately set up as free of responsibility. This is an example of a time when it can be helpful to use ‘treats’ to give them something which is enjoyable and focused on them. Sometimes relatives or friends can help with this, if it is hard to find the time yourself – it will also give them a break from ‘caring’, too. The Resources section at the back of this book includes some charities that support siblings and young carers, and which can signpost to additional support for siblings.

Genetic Conditions

In some families, more than one child may be affected by the same genetic medical condition. While the impact of the condition will vary for each individual child, there will be some commonalities, too. Although siblings may receive a similar type of daily treatment and therefore get a similar amount of parental attention, difficulties can still arise. A child may insist on a particular parent doing certain treatments, which can impact on flexibility. Siblings are very good at noticing when they aren’t getting the same as each other and so sibling rivalry can occur in this situation, too. However, there are potential advantages for the siblings in that, as they get older, they might be a good emotional support for each other.

There may also be genetic ‘carriers’ in the family; for example, a parent who is not symptomatic of the condition, but who carries the genetic material that can be passed on to another child. Some of these conditions are X-chromosome linked, which means that while the mother is a carrier, only her sons will be affected, and daughters may or may not be carriers. Because our understanding of genetic conditions has advanced so much in recent years, the death of a child in a previous generation can be seen in a new light and understood to be due to the same condition as the child who is currently affected.

In some rare conditions, siblings can play a part in the treatment of their affected brother or sister; for example, if they are the best source of closely matched cells for a stem cell transplant, which is used to treat some types of cancer and other metabolic or immunodeficiency conditions. Given the ethical issues associated with asking a child to donate stem cells for the benefit of a sibling, this process is regulated by the Human Tissue Authority. It is considered good practice to ensure siblings have an age-appropriate understanding of the procedure and, where possible, to involve the sibling donor in the decision-making, even if they are not able to give consent themselves. Generally speaking, children have to be sixteen years of age to consent to a medical procedure, but it is possible for children younger than this to be competent to give consent if they have sufficient understanding of the risks and benefits of a procedure.

A stem cell transplant is still a high-risk medical procedure for the child having the transplant, so it is usually only offered if other treatment has not worked. Given the serious nature of the recipient’s medical condition and the strong bonds between siblings, this can make the donor feel that they have no choice but to go ahead, so it is important for the donor to have the opportunity to understand (as best they can for their age) what the procedure involves for them, and to help prepare them for this.

Case Study – Alice (6 years old) and Claire (8 years old)

Alice has been treated for cancer but sadly this has recently relapsed, so she is now about to be admitted for a bone marrow transplant. Her older brother and sister have been tested to see if they are a ‘match’ for her to donate stem cells, and her older sister Claire has been found to be a good match. Alice’s parents are delighted about this because they know that this gives Alice a much better chance of successful treatment but are also thinking about how hard this will be for all the family, because Alice will need to be in hospital for eight weeks having a demanding medical treatment.

They are also concerned about the procedure Claire will need to have to donate and how she feels about being the donor – Claire and Alice are close but, if anything, Alice is the more confident outgoing child, and Claire can be quite timid.

Claire has to come to hospital for a medical assessment to be a sibling donor, and the procedure is explained to her by the nursing team. She is given a copy of a book explaining the donation process called Jess Donates Bone Marrow (published by the Children’s Cancer and Leukaemia Group CCLG – see Resources section) and has a chance to look through this with her parents and ask questions about what will happen. She says she is happy to do this and clearly feels pleased to be ‘chosen’ to be a donor. But at the same time, she is also frightened of having a cannula put in as when she had her assessment she had a difficult experience having a blood test and becomes tearful thinking about this. Although she is still clear she wants to be the donor, she needs some help from a play specialist to help her manage the medical procedure itself. This support is arranged so that Claire has a plan for how to manage with the procedures needed before her operation and fortunately this helps it go more smoothly.

Treats

Some parents comment that they themselves, and other people, overcompensate because they feel sorry for the sibling who is left out; for example, by buying them presents or taking them for treats. While some additional treats do help at times, there is also some value in trying to keep life as normal as possible for the sibling, rather than feeling that these treats are the only way to ‘make up’ for time when you aren’t there. Parents often don’t realise that the most powerful reward for their children is parental attention. Your well child will be more than happy having ‘mum-time’ or ‘dad-time’ sharing an activity together; it isn’t necessary to buy expensive treats. One mother of a seven-year-old boy with a skin condition that requires a lot of daily treatment told us about her ten-year-old daughter who loves going with her in the car whenever she has an errand to run. She says, ‘It isn’t exciting, she just likes being in the car with me.’

Communication

It is important to remember to share information about the health condition with siblings, taking into account how much information they need to understand their sibling’s condition. Sometimes, siblings say that they were never directly told about their brother or sister’s condition and just picked up information from overhearing conversations. As they will not usually be included in medical appointments, they may not get information about any changes in treatment. If they are older than the unwell child, they may be able to take in and understand more than the unwell child or they may ask questions that are in advance of their sibling, which you may not be as prepared for. When at school or outside the home, they may be asked questions by other people about what is wrong with their brother and sister and need a way of being able to explain.

Sometimes, we think of the child with the medical condition when considering their developing understanding of their health and treatment requirements, but siblings need to be considered, too. The following conversation is an example of how a sibling may raise a concern about their brother or sister’s illness, and how they may need an update from time to time about the condition or treatment. Nine-year-old Jaya has a seven-year-old brother, Dylan, who has cystic fibrosis:

Jaya:    Mum, some girls in my class said that Dylan is a drug addict . . . he takes drugs all the time.

Mum:    What did you say?

Jaya:    I said he isn’t a drug addict, leave him alone. You don’t know what you’re talking about. But then I just ran away and I felt really sad. I cried a bit but no one saw me.

Mum:    I don’t want you to ever feel sad at school because of what some of the children say. You are a good girl for telling me about it. Would it be helpful if you had something ready prepared to say if these girls or anyone else says something about Dylan again?

Jaya:    Yes, it would be good . . . what can I say?

Mum:    Well, if anyone asks Dylan why he is taking tablets, he just says, ‘It helps me digest my food,’ and that seems to do the trick. Would you like to say the same?

Jaya:    Thank you, Mum, I’ll say that, too. Is that really why Dylan takes tablets? Will you tell me about it?

Jaya was prompted by an incident at school to ask for more information about her brother’s medical condition. Sometimes it does come out of the blue like this. Parents often find it is better to give information when it is needed, rather than explaining everything all at once.

It is important to give siblings the chance to update their understanding of their brother or sister’s condition by checking if they have questions they want to ask. Some charities or hospitals run family days which can include siblings, and where they can meet other siblings in a similar position to themselves. This can be a really valuable way of helping children feel less isolated, as well as being a fun and informative day.

Case Study – Muhammed (7 years old) and Isha (9 years old)

Muhammed is seven and has been diagnosed with a rare kidney cancer, which involves a lot of treatment in hospital and he is currently out of school. His older sister Isha is nine and has been feeling a bit tearful and upset at times.

One day at school she bursts into tears after a minor falling out with her friend and tells her teacher a bit about what is happening at home. At the end of the day, her teacher asks to meet Isha’s father who is picking her up to discuss how best to help Isha. Her father is a bit reluctant but agrees for Isha to join a group the school runs one lunchtime a week for eight weeks specifically for children who need emotional support. The group involves craft activities but is also facilitated by a therapist from the local Emotional Wellbeing services who includes some activities to help children talk about emotions and problem-solve together. Isha enjoys the group and feels more confident to talk about her concerns.

It is usually helpful to tell the nursery or school for both your unwell child and their sibling a bit about what they are experiencing at home, so that they can understand if they show any signs of upset at school. Normal routines like school become even more important for children when there are disruptions at home, and can really help by being a time when the child is living a ‘normal’ life in the same way as other children of their age.

They may also be able to access some additional support via school, and the advantage of this is that it can be done in a non-stigmatising way since it takes place as part of the normal school day. One example of this is the work done by the charity ‘Place2Be’ which provides counselling within the school environment, on both an individual or group basis (see Resources at the end of the book).

Sibling Rivalry

Siblings often have very intense relationships – they have so much in common, sharing both some of their physical characteristics and the family environment with each other. While brothers and sisters can be very close, there is usually an element of competition and rivalry between them, and these conflicting feelings of caring for – but also resenting – their brother or sister often give rise to a sense of guilt which, in itself, can be very distressing. The intensity of these feelings can be overwhelming and, as we all know, sibling rivalry often continues into adulthood as well. It can be very hard for a child to admit to these feelings in the face of everyone else showing high levels of concern and compassion towards the unwell child.

As a parent, it can be helpful if you can accept this rivalry and show them you can tolerate these strong feelings, first by modelling a calm response, and second by showing them that there are safe ways to express such anger. Much of the usual squabbling that goes on between siblings can be safely ignored. Most of the time, it is better to ignore it than to respond, even if you do find it irritating. Children generally find attention rewarding and this includes the attention they receive when you tell them off; ignoring squabbling ensures that you are not unintentionally rewarding this behaviour by giving it your attention. This can be particularly difficult to do if you are upset or tired, or if this is a sensitive area for you (e.g., if your sibling used to do the same thing to you).

When you are feeling stressed, it is hard to hold on to the empathy for your child’s feelings. We all reach that point occasionally, so it is important for us as the adult to take notice of this and identify what it is that we ourselves need in order to try to manage the situation better. For example, you may recognise that you are not being consistent with a sibling because you feel sorry for them as they are missing out (see Chapter 5 on managing behaviour), whereas actually what they need you to do is to continue with some consistent rules or boundaries.

Case Study – Sarah (4 years old) and Emma (10 years old)

Sarah has serious food allergies and has recently had to go on a ‘few foods’ diet to try and establish which foods are safe for her and which are causing the problems. She has an older brother Callum, aged seven, with no food issues, but her ten-year-old sister Emma has always been a fussy eater and has only ever reluctantly eaten family meals, preferring to snack in between.

Emma now starts insisting that she wants to choose her own food as well and that it is not fair that she has to eat what she doesn’t like and will only eat the foods she likes. Her mother is already finding it difficult to manage Sarah’s diet, and she has been struggling to give Emma the attention she normally does, so she reluctantly goes along with Emma’s requests to try and avoid arguing with her at mealtimes, and increasingly ends up preparing three separate meals – one for Sarah, one for Emma and one for the rest of the family.

This comes to a head one afternoon when Emma changes her mind about the meal she wants, and refuses to eat what she had chosen earlier. Her mother realises she needs to be firm and clear with Emma and decides not to offer her another choice. Emma refuses to eat the meal, which is hard for her mother to tolerate, but it is worth it because Emma realises this isn’t a good strategy to get her own way. Her mother then works towards a compromise, so Emma can have something that she has chosen, but also has to have some of the family meal.

Building Co-operation between Siblings

It can help to try and find some positive tasks that siblings can do together or to give them some joint tasks to do to help build alliances where they might actually find out that they can do something more easily when they co-operate. Sometimes, achieving the task more easily is rewarding in itself and so they don’t actually need a reward as such afterwards.

The following ideas can be helpful to build co-operation between siblings.

Taking turns

Introduce the idea of taking turns as well as sharing and help them to hand over willingly at the end of their turn. Some children are very good at finding ways to avoid ‘handing over’ at the end of their turn, so you do need to be prepared to step in to make it happen.

Solve it yourselves

Try not to take sides by not responding to a child coming to ‘tell tales’ on the others. Otherwise, they will learn that they can find a way of building an alliance with you which effectively ‘splits’ the sibling group. Instead, encourage them to take some responsibility for finding a way to resolve a dispute. Encourage them to do some of the problem-solving – naming what the problem is and getting them to think of possible ways of resolving it; for example, when they are fighting over a toy/game get them to decide what the rule should be about who gets it first – if they can’t find a solution then neither of them gets it, whereas if they can, then they can take turns having it.

Family rules

Develop some family rules that are applied to all consistently – choose from the factors that are most important to you as a family, because after a while these will become part of the fabric of family life. This will be useful when your child realises that not all families have the same rules and compares their lot with other families: e.g., ‘In our family we don’t hurt people either by hitting them or by teasing them’ or ‘We always respect each other.’

Different is OK

Make valuing difference a core family value – this helps with competition and therefore with rivalry. Never compare siblings with each other and instead talk positively about any special differences.

Key Points

•    You can’t be a perfect parent to all your children all the time; aim to be ‘good enough’.

•    Make the most of others who can substitute for you, such as family or friends.

•    Help your well children understand any routine hospital or doctor appointment and show them how you are going to manage these. Update them with key information about their siblings’ health needs, as and when it comes up.

•    Find a ‘special time’ for you to spend time together – short is OK as long as it is reliable – use technology to help with this.

•    Plan ‘fun’ times for them so they can still enjoy being a child.

•    Find ways to build co-operation between siblings. •    Limits still need to be set!

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