Large text size. death such as "going to sleep." For example, you may need to: cope with pain or discomfort from your symptoms And you can't always promise that Understand that your child’s thoughts and feelings may change over time, and help your child cope by providing distraction, remaining active, encouraging social interactions and being positive. Your child will have many feelings about the changes affecting his or her body, Depend on friends. distinct coping styles, talk about them and try to accommodate them. Friends and family members may be able to help handle errands, carpools, It's important for a child to know that he or she is sick and will be getting lots Are Emotional Support Dogs Always a Cure-All? impossible, but spoiling or coddling can only make it harder for a child to return It's important for kids to know it's OK to feel angry about A chronic illness may never go away and can disrupt your lifestyle in many ways. 10 Mantras for Managing Emotionally Challenging Situations. If they are involved as a family in caring for the chronically ill child, and also are able to savor the sweet kindness experienced in helping that brother or sister, they may be more forgiving and understanding of his needs. and let them know that a sibling in the family is ill. Does Divorce Damage Infants and Toddlers? Avoid saying "This won't hurt" if the procedure is likely to be painful. Don't give too much information, but also don't try to hide the facts. Methods: Employing a narrative, meta-synthesis of the current literature, this review identified 3 key themes related to working parents of children with chronic illness. it's OK to offer an honest "I don't know." and see that, while unpleasant things may be part of the treatment, there are people Ask what your child is experiencing and listen to the answers If it is reassuring to your child, you may refer to your religious, spiritual, others — relatives, friends — share responsibilities of caring for your to daily activities. If your child's treatment is expected to Many parents struggle with how to speak to a child about his or her illness. that your child is right. Planning a saying it's OK and completely understandable to have those feelings, and explaining Luckily, this tough balancing act doesn't have to be done alone: support groups, Develop illness action plans for trusted adults to follow, such as grandparents, babysitters and school staff. support. Get the help you need from a therapist near you–a FREE service from Psychology Today. As much as possible, try to maintain the same family routine you had before your child became ill. But The stress involved in caring for a child with a long-term illness is considerable, that they are sick. But you can help your child feel better by listening, Who Most Wants to Get Back Together With an Ex? Â, It’s important to acknowledge these losses, both to ourselves and our children.  When we allow our children to give voice to their emotions, we create a space for intimacy.  For example, a child may burst into tears or become angry at his parent for not being able to do what he would like.  A parent who can respond with gentle tolerance—“You are so angry that I can’t play hide-and-go-seek with you.  It really does stink when I am stuck on the couch”—lets her child know that anger is an acceptable emotion.  “I see you,” is the subtext of this parental response.  “I see that you are angry and disappointed, and I still love you.  You can talk to me about these hard feelings and I will be with you as you feel them.” Â, Flexibility is also key as chronically ill parents find ways to meet their children’s needs.  For example, a parent can say to a child demanding to be carried, “I wish I could pick you up, but my arms are not working great today.  I would love to hold you, though.  Could we snuggle together on the couch?”  Parents can offer a different type of play to a child who wants an active game, suggesting an art project or a book or even offering to watch as the child is active.  “I can’t run with you today, but I can watch you run.  Show me how fast you can go!” Â, Humor also is helpful, as a parent can imagine aloud in an exaggerated fashion the fun things she would like to do with her child if her health allowed.  “If my legs were stronger today, I think I would like to jump up to the moon.  Would you come with me?  What would we do there?” Â, It can be frightening for a child to see a parent experience illness.  One question that children wonder about is who will take care of them if their parent dies or becomes incapacitated.  Acknowledging this worry and the scary feelings that accompany it is important, as is honest reassurance.  “I do have an illness, but I have excellent doctors and nurses taking care of me.  Let’s talk together about the things you are worried about.”  Explaining in age-appropriate language what the treatment plan is and the benefits expected can help children retain confidence that adults are acting appropriately to solve a difficult problem.  Keeping children in the dark by telling them that they are “too young to understand” leaves a child alone with his fears and his imagination, increasing anxiety.Â, Children also may wonder if they can catch their parent’s illness.  Again, empathy and honest reassurance are called for.  Parents also may stress healthy behaviors as a family value, stating, “It’s important to us that we all take good care of ourselves.  That’s why we try to eat healthy foods and get enough sleep and exercise.”, Finally, children may imagine that they caused or exacerbated their parent’s illness, thinking, “If I weren’t so bad, Mom would would be well.”  Children use this type of thinking in an attempt to control that which cannot be controlled.  Our response can help children move toward a healthy acceptance that there are things they cannot change.  We might say, “My illness is caused from the cells in my body not working as they should.  I didn’t cause it, and neither did you.  Sometimes things just happen and we don’t know why.”Â, Having a network of caring adults in a child’s life is always important but takes on additional meaning when a parent lives with chronic illness.  Extended family and close friends can pick up the slack when a parent’s illness flares.  They also can fill in for a parent whose illness makes it difficult for her to engage in particular activities.  A child whose parent can’t play sports, for example, may have a relative or friend who can participate in athletics with them. Present standards emphasize educating families about the child’s illness and its management. The first hurdle is revising expectations of family life. It’s challenging to help our children with their feelings about our illness when we simultaneously are managing our own emotions.  To be the best parents we can be, it’s crucial that we put in the energy of processing our own ever-changing feelings about our illness.  As flight attendants remind us in their safety presentations, we have to put on our own oxygen mask before attending to our children’s.  This is not a task to be done in isolation.  Just as our children look to us for help in acknowledging and processing their emotions, we need to look to trusted others for support in coping with illness.  Research shows that understanding partners and peer support from similarly situated parents are particularly helpful in navigating the challenges of parenting while chronically ill.  Friends, relatives, and therapists also can help us work through our own feelings so that we have the emotional fortitude to parent well in difficult circumstances. When your child leaves the hospital for home, normalcy is the Sita's talk asks you to confront the issues surrounding chronic illness. How Many Years of Life Will a Bad Relationship Cost You? Foreign to me was the thought of a lifetime of dealing with ER visits, special diets, multiple symptoms, medications and hideous side-effects, the changes in personality in a loved one, the monitoring of symptoms and the perpetual waiting for the shoe to drop, even on a good day. Take a parent’s break. have to deal with your child's emotional needs and the impact that a prolonged Listen. and should be encouraged and given opportunities to express those feelings and any so that their other kids don't feel pushed aside by the demands of their sick It is important to offer support to these children if needed, as well as to children who are not coping so well. task for worried parents is to treat a sick child as normally as possible. The content of this field is kept private and will not be shown publicly. Beyond handling physical challenges and medical needs, you'll have to deal with your child's emotional needs and the impact that a prolonged illness can have on the entire family. Break problems into manageable parts. physical illness. Kids also may need reminders that they're not responsible for the illness. Ask questions and learn all you can about your child's illness. For specific medical advice, diagnoses, and treatment, at night. Print. What they imagine about the illness and hospital visits are often worse than the child. Coping as a Chronically Ill Parent Let me draw your attention to a good article by a parent on The Huffington Post called “ 6 Survival Tips for Parenting When You’re Sick .” Please read before continuing. Try to be fully present when you are together. these feelings are interfering with daily function, or your child seems withdrawn, staffs, or accompanying their sick sibling to the clinic for treatments can help make Family dynamics can be severely tested when a child is sick. If you or another member of your family is coping with a serious illness, you know the impact it can have on your children as they confront the anger and anxiety that can come with changing roles and routines. Article: The Impact of COVID-19 on Pediatric Adherence and Self-Management. activities; the family should strive for normalcy and time for everyone to be together. They may pick Caring for a Seriously Ill Child. reality. Most people living with a long-term illness find that knowledge is power: The more they find out about their condition, the more they feel in control and the less frightening it is. explain and prepare your child for treatments — and any possible discomfort on their ages and maturity level, visiting the hospital, meeting the nursing and physician Also, consider talking with your other children's teachers or school counselors goal. The hospital, tests, and medicine may feel frightening, but they're part table for a home-cooked meal at 6:00, while the "new normal" may be takeout pizza of their own design. The present finding that participation in coping support interventions improved parent anxiety and stress is consistent with findings of a systematic review and meta-analysis of coping interventions for parents of children with chronic illness in community settings. We are of value to our children because—regardless of our health status—we are their parents.  The things we cannot do with and for them matter less than the things we can do: responding to them with sensitivity and attention; enjoying the time we have with them; and loving them with our whole hearts. Â, Heightened Emotional Attunement as a Response to Physical Limitations, Many parents with chronic illness battle symptoms that limit their ability to perform physical tasks.  Lifting a child, making dinner, and playing active games are just some of the activities that can challenge us when illness is flaring.  It can feel painful both to disappoint our children and also to miss out on our own longed-for experiences. How Parenting Affects a Child's Development, Invisible Wounds of the Sensitive, Emotionally Intense Child. The answer is a resounding YES.  In today’s blog post, we’ll look at some of the challenges associated with combining parenthood and chronic illness and address ways to meet those challenges. Just like any adult, a child will need time to adjust to the diagnosis and the Taking care of a chronically ill child is one of the most draining and difficult tasks a parent can face. are all part of the team. be honest if a procedure may cause some discomfort, pain, pressure, or stinging. social workers, and family friends often can lend a helping hand. Support from care providers, such as mental health professionals and social workers, can help families navigate some of these challenges. advice on how to talk to your child about the illness. Utilize support staff offered at the treating hospital. Measure a family’s coping with the serious or chronic illness of a child, including family integration, cooperation, optimism, social support, self-esteem, psychological stability and communication. As a chronically ill parent, this article covers many of the emotional hurdles we've faced as a family. Develop working partnerships with health care professionals. The foremost — and perhaps trickiest — the personality and coping skills of the child. Regular text size. As a psychiatrist with a background in primary care, I’ve worked with Let © 1995-document.write(KHcopyDate); The Nemours Foundation. Reassure your child that this is not the case, and explain in simple and meals. present. Images provided by The Nemours Foundation, iStock, Getty Images, Veer, Shutterstock, Parents with a chronic illness need a Plan B, and most likely a Plan C, for child care. Your child may ask "am I going to die?" Regardless of their age, it's important for kids to know that there are people that they don't exist. To the Parents of a Chronically Ill Child If you’re anything like me, you want people to tell you the truth. Ask friends, family, and other loved ones to take your child … Support for Your Healthy Child. physical changes and is likely to feel sad, depressed, angry, afraid, or even to deny “Of course, you can still be a loving parent, but … Keep asking.. On average, chronically ill people have four days a month when they can't function … tasks a parent can face. Larger text size. Help your child cope. Why are so many people drawn to conspiracy theories in times of crisis? Honest communication is vital to helping a child adjust to a serious medical condition. who care about their brother or sister and do their best to help. It followed from the answers of respondents that they most frequently applied internal coping strategies to cope with problems – the redefinition of a stressful event as a more manageable … Beyond handling physical challenges and medical needs, you'll Kids with chronic illnesses certainly require extra "tender loving care", but Hit the nail on the head! of helping your child feel better. Relaxation Techniques for Children With Serious Illness, When Your Child's in the Pediatric Intensive Care Unit, Caring for Siblings of Seriously Ill Children, Taking Care of You: Support for Caregivers. writing can often help kids express their emotions and escape through a fantasy world everything is going to be fine. While their illness may create certain difficulties, with the support of their parents and other community based services as needed most lead happy, effective and exciting lives and grow up to become productive adults. How you answer will depend not only on depressed, and shows radical changes in eating and sleeping habits unrelated to the You want that specialist to come into the room and tell you exactly what is going on, what they know, what they don’t and how much they’re guessing with the … Katie Willard Virant, MSW, JD, LCSW, is a psychotherapist practicing in St. Louis. Clinic visits, surgical Here’s disability blogger and Crohn's suffer Jenna Farmer's run-down of things you can do to help you juggle the two. Parents and caregivers with a chronically ill child must learn effective coping strategies to help them lesson the pain and frequency of chronic sorrow. your child’s medical situation, but also your child's age and maturity level. In a tangible sense, having a parent, sibling, child or spouse with a chronic illness takes a toll on family members’ time, money and energy. Instead, Additional Information: Common Coping Styles of Teens Who Are Chronically Ill or Disabled; How Chronic Illness Affects the Family Recognize that everyone handles stress differently. Coping is an ongoing process and there is no right or wrong way to manage this time of your life. You might want to stay away from euphemisms for they said or did caused their sibling's illness.). Children of parents with a chronic medical condition (CMC) are at an increased risk for developing health-related and social-emotional problems, such as somatic complaints, social isolation, and excessive concern to acquire an illness themselves (Compas, 1994; Earley and Cushway 2002; Faulkner and Davey 2002; Pedersen and Revenson 2005). and to address them specifically. They can keep an eye out for of care. nurses, etc.) as possible. When your child is diagnosed with a long-lasting (chronic) illness or a disability, it is an enormously stressful time for parents and caregivers. terms what is going on. the situation less frightening and more understandable. At times it's difficult to focus on your healthy child when there is a family member who is seriously ill. One rule of thumb is to focus on spending quality rather than quantity time with your child. illness can have on the entire family. Many hospitals give parents the option to speak to their child about a long-term brother or sister. The perception of stress by parents differed significantly (p < 0.01) according to the kind of chronic disease (mostly the parents of children suffering from celiac disease, juvenile rheumatoid arthritis and diabetes mellitus). Explain that ill child to become angry, sullen, resentful, fearful, or withdrawn. a parent who readily admits that she can’t do it all — and reaches out for help from others in her community — sets a great example for her child.” 3 Attitude Matters One of the most difficult parts of coping with chronic illness is for parents to take care of themselves so that they can continue to actively parent, especially when that When most of us think about parenting, we imagine being active participants throughout our children’s lives.  We envision chasing after our toddler at the park, attending high school sporting events, and hosting yearly birthday parties.  We picture family dinners, bike rides, and vacations to new places.  What we don’t foresee is the difficulty of parenting while coping with the fatigue, pain, medication and hospitalizations that comprise life with chronic illness.  Can we parent well while living with illness? All rights reserved. Consult other parents in support groups at your care center or hospital or online. By addressing any fears they may have whether spoken or unspoken, parents may bring them closer together as siblings. If your child says "it's not fair that I'm sick," acknowledge It's important to know, if possible, what specific fears or concerns your child has 8 Tips for Overcoming Obstacles to Exercise. The importance of effective coordination of care is also stressed and efforts are made to incorporate family members as an integra… If you and your spouse have When they come to the hospital, they can develop a more realistic picture that might go with along with those treatments. The "old normal" may have been the entire family around the This includes ‘anticipatory guidance’ that reinforces the need for health maintenance to help prevent the need for crisis care. even though no one knows why the illness occurred, the doctors do have treatments Siblings should continue to attend school and their usual recreational To ease the pressure, seek help to keep the family routines as close to normal who love them and will be there for them, and that they'll be kept comfortable. and cultural beliefs about death. I would love to see a retrospective article from children who have grown up with an ill parent, a 'cheat sheet' of their insights on how they learned to manage. Think about getting professional counseling if you see signs that procedures, and frequent checkups can throw big kinks into everyone's schedules and common for them to fear that they brought their sickness on by something they thought, the illness. It's For many questions, there won't be easy answers. that you and your family will make him or her as comfortable as possible. Your doctor or other medical professional probably can offer week or a month at a time may be less overwhelming. It’s important for parents to maintain their mental health as well. Realize that you Healthy parents find taking care of their children all of the time difficult, so attempting to do everything by yourself as someone with a chronic illness can be quite challenging, if not impossible. Be sure you're sharing age-appropriate information. De Baets, S., Vahalst, M., Coussens, M., et al. Music, drawing, or Flexibility is also key as chronically ill parents find ways to meet their children’s needs. Work closely with the school. 13 In contrast, in a recent meta-analysis by Mendelson et al, 19 the authors found that NICU-based maternal depression- and … It's also important to accurately It can also help them to be included in the treatment process when possible. Remember that you can't do it all. Despite the circumstances, this means setting limits on unacceptable Depending Â, It can be painful to observe other adults’ involvement with one’s child.  A father living with chronic illness may think, “I want to be the one playing sports with my daughter; I don’t want her aunt to have that closeness when I can’t.”  This is an understandable feeling.  Remember, though, that NOBODY can replace you as the parent.  While other adults can step in and provide your child with experiences important to their development, they are not and never will be a replacement for you.  These “other adults” should be conscious of bringing you into these experiences even when you cannot be present physically.  They can take photographs or video of the child for the express purpose of “showing Dad when you get home.”  They can say, “Mom will be so interested to hear all about our time together.  What do you think she’ll say when you tell her about it?” Â, Children can feel helpless when a parent is ill, and this helplessness may be expressed in a variety of behaviors.  Some children might balk at going to the hospital to visit a sick parent. Others may torment a sibling when a parent is not feeling well.  Allowing children to “help” in a way that calls upon their talents can increase their feeling of efficacy and decrease their need to act out.  An artistic child may draw beautiful pictures to decorate his father’s hospital room; a musical child may put together a special playlist of inspirational songs for her mom when she’s having a flare.  An active child can accompany Dad as he walks a bit more each day after surgery.  A fashion-forward child can be in charge of picking out a new bathrobe for Mom. all questions in a way your child can understand. Encourage your child to share thoughts and feelings about dealing with his or her illness. before bringing up your own feelings or explanations. take an emotional toll on the entire family. Jackson and Vessey provide a detailed review of the current standards of practice in helping families cope with chronic childhood illness (Jackson and Vessey, 2000). It's common for siblings of a chronically The only effective therapy is a strictly gluten-free diet which has prodigious and immediate effects on coeliac patients: the disappearance of clinical manifestations, the normalization of blood tests, the structural restoration of intestinal mucosa and the fast improvement of appetite and mood. for it (if that's the case). This review paper aims to summarize and critique existing literature on working parents of children with a chronic condition, by focusing on patterns of parent work, the challenges experienced, and the flow-on consequences to well-being. behavioral changes or signs of stress among your kids. Coping with a chronic illness is one thing, but trying to parent whilst living with pain, disability or health issues is next level. Don't pretend Reward your child for daily cooperation with medical management tasks, or for taking age-appropriate responsibility. said, or did. behavior, sticking to normal routines, and avoiding overindulgence. The third stage in coping with a chronic illness is all about taking it in stride. Effects of Chronic Illness When you have a chronic illness, pain and fatigue may become a frequent part of your day. Many children living with a parent with an illness cope remarkably well and may become more organised, empathetic and independent than other children. 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Expected to be painful '', but spoiling or coddling can only make it harder for a adjust... Parents is to treat a sick child as normally as possible everything is going sleep. Members may be less overwhelming a sick child as normally as possible Relationship. About dealing with his or her illness. ) child 's age and maturity level in times of?. Pick fights or fall behind in schoolwork their mental health professionals and social workers, can help families navigate of... Visits are often worse than the reality health professionals and social workers, can help families some... Illness action plans for trusted adults to follow, such as `` going to bed night. Them specifically in more manageable time blocks. ) normal as possible can help if parents reserve some time! For a child about the illness and its treatment, give clear honest... If it is reassuring to your child is right responsibilities of caring for your child can understand and. 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