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Palliative Care for Congenital Heart Conditions: Preparing Your FamilyPPalliative Care for Congenital Heart Conditions: Preparing Your FamilyPalliative Care for Congenital Heart Conditions: Preparing Your FamilyEnglishCardiologyChild (0-12 years);Teen (13-18 years)HeartCardiovascular systemNon-drug treatment;Support, services and resourcesAdult (19+)NA2010-05-19T04:00:00ZLaura Beaune, RNChristine Newman, MD, FRCPC8.0000000000000064.00000000000001609.00000000000Flat ContentHealth A-Z<p>Palliative care affects the whole family. Learn about discussing death and dying with your child and your family.<br></p><p>The death of a sick child will affect everyone in your family, from your spouse, to your other children, to grandparents and other extended family. Someone from the palliative care service is available to speak to your whole family if requested. This will open the door to discussions about everyone's fears and concerns. It's important to be aware that each family member may be in a different place when it comes to being able to accept the reality that a relative is dying. </p> <p>As much as possible, families need to focus on the time that they have with their child and make the most out of that time.</p> <p>It is important for information to be shared with all family members, taking into account the age of siblings, for example, and the desire for information. </p><h2> Key points </h2> <ul><li>Ill children should be involved as much as possible in decisions about their treatment. </li> <li>Ill children may minimize their pain and fear. </li> <li> Healthy siblings may feel forgotten family members and need to understand why their parents are absent more than usual.</li> <li>Children grieve as intensely as adults, but show it differently.</li> <li>Palliative care team members and chaplains can provide emotional support. </li></ul>
Préparer sa famille aux soins palliatifs pour les anomalies cardiaques congénitalesPPréparer sa famille aux soins palliatifs pour les anomalies cardiaques congénitalesPalliative Care for Congenital Heart Conditions: Preparing Your FamilyFrenchCardiologyChild (0-12 years);Teen (13-18 years)HeartCardiovascular systemNon-drug treatment;Support, services and resourcesAdult (19+)NA2010-05-19T04:00:00ZLaura Beaune, RNChristine Newman, MD, FRCPC8.0000000000000064.00000000000001609.00000000000Flat ContentHealth A-Z<p>Les soins palliatifs touchent toute la famille. Découvrez comment parler de la mort et du processus de la mort avec votre enfant et avec votre famille.<br></p><p>Le décès d’un enfant malade va toucher tous les membres de votre famille, que ce soit votre conjoint-e, vos autres enfants, les grands-parents ou la famille élargie. Une personne du service de soins palliatifs est disponible pour parler à toute votre famille si vous en faites la demande. Cela permettra d’engager une discussion au sujet des craintes et des préoccupations de chacun. Il est important de prendre conscience du fait que chaque membre de la famille est différent pour ce qui est de pouvoir accepter la réalité d’un proche mourant. </p> <p>Dans la mesure du possible, les familles doivent se concentrer sur les moments qu’elles passent avec leurs enfants et en profiter au maximum.</p> <p>Il est important de partager l’information avec tous les membres de la famille, en tenant compte de l’âge des frères et sœurs, par exemple, et du désir d’obtenir cette information. </p><h2> À retenir </h2> <ul><li>Les enfants malades doivent être inclus autant que possible dans les décisions relatives à leur traitement. </li> <li>Il se peut qu’ils minimisent leur douleur et leurs craintes. </li> <li>Les frères et sœurs en bonne santé peuvent se sentir oubliés et doivent comprendre les raisons pour lesquelles leurs parents sont plus absents qu’à l’ordinaire.</li> <li>Les enfants souffrent aussi intensément que les adultes, mais ils le montrent différemment.</li> <li>Les membres de l’équipe de soins palliatifs et les aumôniers peuvent apporter un soutien émotionnel.</li></ul>

 

 

Palliative Care for Congenital Heart Conditions: Preparing Your Family1687.00000000000Palliative Care for Congenital Heart Conditions: Preparing Your FamilyPalliative Care for Congenital Heart Conditions: Preparing Your FamilyPEnglishCardiologyChild (0-12 years);Teen (13-18 years)HeartCardiovascular systemNon-drug treatment;Support, services and resourcesAdult (19+)NA2010-05-19T04:00:00ZLaura Beaune, RNChristine Newman, MD, FRCPC8.0000000000000064.00000000000001609.00000000000Flat ContentHealth A-Z<p>Palliative care affects the whole family. Learn about discussing death and dying with your child and your family.<br></p><p>The death of a sick child will affect everyone in your family, from your spouse, to your other children, to grandparents and other extended family. Someone from the palliative care service is available to speak to your whole family if requested. This will open the door to discussions about everyone's fears and concerns. It's important to be aware that each family member may be in a different place when it comes to being able to accept the reality that a relative is dying. </p> <p>As much as possible, families need to focus on the time that they have with their child and make the most out of that time.</p> <p>It is important for information to be shared with all family members, taking into account the age of siblings, for example, and the desire for information. </p><h2> Key points </h2> <ul><li>Ill children should be involved as much as possible in decisions about their treatment. </li> <li>Ill children may minimize their pain and fear. </li> <li> Healthy siblings may feel forgotten family members and need to understand why their parents are absent more than usual.</li> <li>Children grieve as intensely as adults, but show it differently.</li> <li>Palliative care team members and chaplains can provide emotional support. </li></ul> <h2>Concerns of seriously ill children</h2> <p>Parents and doctors need to be positive yet realistic with children and answer their questions when they ask. Children know when information is being withheld or is inaccurate. </p> <p>Ill children should be involved as much as possible in all decisions about the course of their treatment. That means they need to know what the options are and their possible impact. </p> <p>To try to protect their parents, ill children may minimize their pain and fear. Be prepared to compassionately probe for information from your child. </p> <p>Children may not be able to clearly express their concerns and questions. Not asking questions doesn’t mean they’re not interested. It's important to pay attention to non-verbal indications of a readiness to talk. Caregivers and parents must be willing to raise difficult issues and to provide support and encouragement so children can deal with their feelings and thoughts. </p> <p>Younger children’s most effective communication is through play. They should be surrounded with things they love. Families and caregivers should be playful with them. </p> <p>Adolescents who are seriously ill struggle with issues of dependence and independence. Their need to be taken care of because of their illness conflicts with their age-appropriate need to become more independent. </p> <p>Families need help understanding how their attitudes affect their ill children. Families who believe that by trying hard enough obstacles can be overcome may make their ill children feel like failures. These children may feel that have let their family down by not "winning the battle." </p> <h2>Issues for the family</h2> <p>The psychological strains on the family rival the physical strains on the patient. A child’s illness causes parents to question their ability as parents to protect and nurture their children. Families need to celebrate the part of family life that is still intact. </p> <p>The shift to palliative care may be fraught with possibilities of blame, shame, and guilt in some healthy family members. Signs of stress in caregivers may include sadness, irritability, criticism, defensiveness, contempt, and withdrawal. If your family is having trouble coping, talk to the palliative care team. </p> <p>It is a good idea to talk to a professional counsellor, such as a social worker, psychologist, or other health professional, especially at times of crisis: for example, when the child is diagnosed and when the child moves to palliative care. </p> <h2>Issues for siblings</h2> <p>Healthy siblings can become the forgotten family members. Siblings need to have accurate information appropriate to their developmental level. They should also understand why their parents are absent more than usual. </p> <p>The younger the child, the more they feel responsible for their sibling's illness. Young children need to know the answers to these questions:</p> <ul> <li>How did their sibling become ill? </li> <li>Were they the cause of their sibling’s illness in any way? </li> <li>Will they catch the same illness? </li></ul> <p>Siblings need the opportunity to talk about their feelings with someone they trust. Since they may not want to burden you at this time, it is important to help your other children connect with an appropriate person. </p> <p>Anger is common in healthy siblings. They resent the care and attention devoted to the ill child.</p> <p>Guilt is also common in healthy siblings. They may feel guilty because</p> <ul> <li>They are healthy. </li> <li>They fear they did something to cause the illness. </li> <li>They have difficulties in relating to the ill sibling. </li></ul> <p>Healthy children often feel they must compensate for the loss of their sibling. Or parents may cast them in the role of a substitute for the ill child. </p> <h2>How do you discuss death with your child?</h2> <p>Terminally ill children need to know what condition they are in and what the plans are for their care. This will inevitably lead to discussions about death. Try not to shy away from these discussions, as hard as they may be. Children can pick up on emotion and body language, so bad news will be hard to hide. </p> <p>Speak plainly and honestly, providing just as much detail as is necessary depending on your child's age and need, when you talk about the concept of death. Your child may come right out and ask "Am I dying?" To this you might consider responding: "I wish I could cure your illness, but you're getting sicker…you are dying." In many cases, being able to hear the truth offers some relief to the child. Children need closure as well. </p> <p>Hearing the news will of course be upsetting. Reassure your child that they are loved and will not go through this alone. Depending on your child's age and level of maturity, they will likely need to think things over, absorb the information, and come back with more questions, so you may to have this discussion several times. </p> <p>Do your best to answer your child's questions but don't worry if you don't have all the answers. Just tell your child you don't know. Your child may also have some very practical questions, like "What happens to the money in my piggybank after I'm gone?" or "What if my sister is sad?" Do your best to answer and reassure them. </p> <p>There are some very helpful Web sites that provide information on this topic. See the Resources page for more details. </p> <h3>Talking about death with your other children</h3> <p>Siblings need to be a part of their ill sibling’s death, including the funeral—regardless of their age.</p> <p>Children grieve as intensely as adults, but show it in different ways. This applies to both ill and healthy children. These are some common symptoms: </p> <ul> <li>physical distress, such as headaches or stomach aches</li> <li>regression in behaviour </li> <li>fear of their own or their parents’ death: they may become hypervigilant </li> <li>anger and acting-out behaviour </li> <li>repression of their feelings and withdrawal </li> <li>lack of interest in their usual or new activities </li> <li>pretending physical symptoms to gain attention </li> <li>depression, which appears in children most commonly as irritability or </li> <li>restlessness </li></ul> <h2>How do you support your child emotionally?</h2> <ul> <li>Be there for your child. Many children will fear being alone in their final days. </li> <li>Let them be a kid and do the things kids do, like play. </li> <li>Continue to parent and set limits. </li> <li>Talk with your child, whether it be about their illness or an everyday topic. Be as comforting as possible. </li> <li>Accept that depression and withdrawal are common responses to a fatal illness. </li> <li>Acknowledge how your child is feeling. </li> <li>If your child is older, give them opportunities for independence and control. </li> <li>Fulfill a wish for your child, whether it be an ambitious family trip or something needing the help of one of the wish foundations, like Children's Wish Foundation, the Starlight Foundation, or the Make A Wish Foundation. </li> <li>Create nice memories together. </li> <li>Some children seek permission to die. Grant this permission to enable your child to relax, stop worrying, and let go. Repeat this message as necessary. </li> <li>Reassure your child that they will be missed and always loved. </li> <li>Hold and touch your child as much as possible during her illness and when they die. </li></ul> <h3> Legacy planning</h3> <p>Talk to your child and the palliative care team about creating a legacy. Your child may want to decide what happens to their favourite toys and belongings after they die. Or they may want to create a video, photo album, or music CD of favourite songs or their own voice so that your family will have it after death. </p> <h2>What will you be feeling at this stage?</h2> <p>If your child has been sick for a while, you probably have an idea about what's coming. This in no way makes it easier to cope, but you may at least be in a place where you are able to consider some key issues. You will probably experience anticipatory grief, which is grief experienced prior to the actual death. You will likely feel sad, depressed, stressed, angry, and fearful for your child and your family. Everyone who goes through this experience undergoes very difficult physical and emotional changes. Over time, you will find a way to cope with your feelings. </p> <h3>Where can you find emotional support?</h3> <p>Palliative care team members have experience helping families in situations similar to yours and can provide you with emotional support. They can also put you in touch with other families who have had a similar experience. Chaplains are often part of the team at the hospital and available to offer spiritual and emotional care to patients and families of diverse backgrounds and religions. You can also turn to pastoral care workers, clergy, children's mental health associations, and private therapists for support. </p>Palliative Care for Congenital Heart Conditions: Preparing Your Family

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