Palliative care for brain tumours: Preparing your familyPPalliative care for brain tumours: Preparing your familyPalliative care for brain tumours: Preparing your familyEnglishNeurologyChild (0-12 years);Teen (13-18 years)BrainNervous systemNAAdult (19+)NA2009-07-10T04:00:00ZKaren Drybrough, RN, MScN Ute Bartels, MD Laura Janzen, PhD, CPsych, ABPP-CNFlat ContentHealth A-Z<p>An in-depth discussion of the many difficulties and issues concerning palliative care. Trusted answers from Canadian Paediatric Hospitals.</p><p>Having such an ill child will affect many people: you, your spouse, to your other children, grandparents, other extended family, and friends. Your primary care team and palliative care team are available to speak to the whole family about what palliative care encompasses. This will open the door to discussions about everyone's fears, worries, needs, and hopes. Each family member may be in a different place when it comes to being able to accept the reality that a relative is dying. It is important to appreciate everyone's viewpoint regarding their role as it pertains to your child. </p><h2>Key points</h2> <ul><li>Try to be honest with your ill child about what is happening without being abrupt or frightening.</li> <li>Seek support for yourself, your family and your other children if and when you need it.</li></ul>
Soins palliatifs pour les tumeurs cérébrales : Préparer votre familleSSoins palliatifs pour les tumeurs cérébrales : Préparer votre famillePalliative care for brain tumours: Preparing your familyFrenchNeurologyChild (0-12 years);Teen (13-18 years)BrainNervous systemNAAdult (19+)NA2009-07-10T04:00:00ZKaren Drybrough, RN, MScNUte Bartels, MDLaura Janzen, PhD, CPsych, ABPP-CNFlat ContentHealth A-Z<p>Discussion approfondie sur les nombreuses difficultés et préoccupations en ce qui concerne les soins palliatifs. Réponses dignes de confiance des hôpitaux pédiatriques canadiens. </p><p>Le fait d’avoir un enfant aussi malade affectera bon nombre de personnes : vous, votre conjoint, vos autres enfants, les grands-parents, la famille élargie et les amis. Votre équipe des soins primaires et des soins palliatifs est disponible pour parler à toute la famille au sujet de ce qu’englobent les soins palliatifs. La porte sera donc ouverte pour des discussions au sujet des peurs, des inquiétudes, des besoins et des espoirs de tout le monde. Chaque membre de la famille peut accepter différemment la réalité du fait qu’un proche va mourir. Il est important de reconnaître le point de vue de tout le monde quant au rôle joué en ce qui a trait à votre enfant. </p><h2>À retenir</h2> <ul><li>Essayez de demeurer réaliste avec votre enfant malade en lui expliquant ce qui arrive sans être brusque ni lui faire peur.</li> <li>Recherchez du soutien pour vous-même, votre famille et vos autres enfants si vous en éprouvez le besoin.</li></ul>

 

 

Palliative care for brain tumours: Preparing your family1389.00000000000Palliative care for brain tumours: Preparing your familyPalliative care for brain tumours: Preparing your familyPEnglishNeurologyChild (0-12 years);Teen (13-18 years)BrainNervous systemNAAdult (19+)NA2009-07-10T04:00:00ZKaren Drybrough, RN, MScN Ute Bartels, MD Laura Janzen, PhD, CPsych, ABPP-CNFlat ContentHealth A-Z<p>An in-depth discussion of the many difficulties and issues concerning palliative care. Trusted answers from Canadian Paediatric Hospitals.</p><p>Having such an ill child will affect many people: you, your spouse, to your other children, grandparents, other extended family, and friends. Your primary care team and palliative care team are available to speak to the whole family about what palliative care encompasses. This will open the door to discussions about everyone's fears, worries, needs, and hopes. Each family member may be in a different place when it comes to being able to accept the reality that a relative is dying. It is important to appreciate everyone's viewpoint regarding their role as it pertains to your child. </p><h2>Key points</h2> <ul><li>Try to be honest with your ill child about what is happening without being abrupt or frightening.</li> <li>Seek support for yourself, your family and your other children if and when you need it.</li></ul><h2>Concerns of seriously ill children</h2> <p>You, your child's other caregivers, and doctors need to be positive yet realistic with your child and answer their questions when they asks. Children at the end of life have a special sense of when information is being withheld or is inaccurate. When your child asks questions, they are best answered honestly yet sensitively according to their age. </p> <p>Being honest with your child doesn't have to be abrupt or frightening. Discussions like these can start out with sentences like "You look sad today. Mommy is sad too." </p> <p>Your child 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>You may feel overwhelmed with trying to find the right words to say to your child. The palliative care team will help you find the right way to answer difficult questions and address issues. They may help you feel more confident about providing support and encouragement to your child. </p> <p>To try to protect you or other caregivers, your child may minimize their pain and fear. Be prepared to compassionately probe for feelings and thoughts from your child. Your child may not be able to clearly express their concerns and questions. Not asking questions doesn’t mean your child is not interested. Pay attention to non-verbal indications of a readiness to talk. </p> <p>Younger children’s most effective communication is through play. Surround your child with things they love. Encourage family members and caregivers to take time to play with your child. Choose toys and games that your child loves. </p> <p>Teenagers struggle with issues of dependence and independence. They have an age-appropriate need to become more independent but at the same time they are even more dependent on you and other caregivers than ever before. The palliative care team can advise you on how to best reach this balance. </p> <p>Your and your family's attitudes can affect your child. For example, if you and your family believe that by trying hard enough obstacles can be overcome, your child may feel like a failure. She may feel that she has let the family down by not "winning the battle." </p> <p>Even though it is difficult, it is very helpful to take the lead from your child. Children tend to live much more in the moment. By taking your child's approach to life, living in the present without worrying about yesterday or tomorrow, the present time will be a gift and a time to treasure. </p> <h2>Potential issues for you and your family</h2> <p>As your child's illness progresses, your family’s ability to cope may change over time.</p> <p>Your child’s illness might cause you to question your ability as a parent to protect and nurture your children.</p> <p>It is helpful if both you and your partner can share in the care of your child. This may not always be possible. You may need to review what support is available within your family. </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. Try to set boundaries around the illness so that not all activities are affected by or centre on the illness. </p> <p>Especially during a long illness, you, your partner, and other caregivers may be torn between meeting the needs of your child and maintaining your other family and professional responsibilities and requirements. </p> <p>Multiple traumas make it harder for you and your family to cope. This is normal. The palliative care team can help provide support. </p> <p>The transition 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 you or your family members are showing any signs of stress, contact your palliative care team. They can help you consider various options for help. </p> <p>Negative thoughts and feelings, including intense anger, ambivalence, death wishes, and escape fantasies, are common, especially during a prolonged illness. It helps to talk about it within your family or with your treatment team. </p> <p>Even a family breakdown may occur when there is a prolonged illness of a child. If this is happening to your family, your treatment team can help you find appropriate support. </p> <p>If your family is in crisis, for example, if your child has just moved palliative care, you may need help from your treatment team or palliative care team. They can help direct you to the right person to talk to. </p> <h2>Issues for siblings</h2> <p>Your other healthy children can become the forgotten family members. They need to have accurate information appropriate to their developmental level. </p> <p>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>The younger your healthy children are, the more they may feel responsible for their sibling's illness.</p> <p>Your healthy children need the opportunity to talk about their feelings with someone they trust. Since they may not want to burden you, it is important to help them connect with an appropriate person. </p> <p>Your healthy children may feel they are losing you as well as their ill sibling.</p> <p>Your healthy children need to know that they can help with the care of your child, even in a very small way. When your child dies, siblings may want to present at the death. They should be included in the funeral ceremonies. They can help by choosing flowers, songs, or settings, 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 (e.g. headaches, 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 restlessness </li></ul> <p>Your healthy children may feel angry. They may resent the care and attention devoted to your ill child.</p> <p>Your healthy children 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. Make sure not to cast them in the role of a substitute for your ill child. </p> <p>For healthy children, the illness and possible death of another child challenges their sense of immunity from serious illness and death until old age. This is a crisis that forces them to readjust their view of the world and their place in it. When this happens, the palliative care team can advise support in the community to help your other children cope with their difficulties. </p> <p>Your healthy children's reaction to such a profound loss will change over time with different stages of their growth and development.</p> <h2>How do you discuss death with your child?</h2> <p>Before talking to your child about dying, you can practice what you are going to say with someone you trust. You might also want them to be there when you actually do talk about dying with your child. Remember though that no matter how much you prepare for the conversation, there will always be surprises. Answer your child's questions as honestly and clearly as you can. </p> <p>Here are some tips to use when talking to your child about dying:</p> <ul> <li> Use clear, concrete language.</li> <li> Always identify the illness by name. The words "sick" and "bump" may sound less scary than "cancer" and "tumour" but they are actually confusing to children. </li> <li> Ask your child to describe what they know about the situation so far. Make sure they understand any medical terms you are about to use. </li> <li> Address anything your child does not yet know about the cancer. Describe the disease and how it works.</li> <li> Tell your child there is nothing they could have done to prevent having cancer. Also reassure them that they are not "contagious." </li> <li> Explain which treatments have been used and how the doctors know they are not working. Signs that a treatment is not working may include loss of strength or a change in abilities. </li> <li> Explain the difference between the medicines they are taking to treat the cancer and the medicines they are taking to treat pain symptoms. </li> <li> Explain to your child clearly that they are going to die. Phrases like "there's nothing more we can do" are not clear. Try saying "I wish I could cure your illness, but you are getting sicker. You are dying." Hearing the truth can offer some relief to your children and provide closure. </li> <li> Check often to make sure your child understands what you are saying.</li> <li> Ask your child if there is anything they have been wondering or worrying about.</li> <li> When you do not know the answer, say so. Tell your child you will ask the right person and get back to them.</li> <li> Pay attention to your child's reactions. For example, if they look sad or surprised, ask them what it is that you said to make them feel that way. </li></ul> <p>Hearing the news will of course be upsetting. Do your best to 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>There are some very helpful Web sites that provide information on this topic, such as <a href="http://www.hospicenet.org/">http://www.hospicenet.org </a>and <a href="http://www.dougy.org/">http://www.dougy.org </a>(the National Center for Grieving Children & Families). </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're 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. Sharing those changes with family members, friends, and health care professionals will help you cope with your feelings. Over time, you will find a way to cope with your feelings. </p> <h2>Where can you find emotional support?</h2> <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 if you wish. 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> <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> Maintain your parenting style, including setting limits, because this is what your child knows best.</li> <li> Take time to talk with and comfort your child as often as possible.</li> <li> Accept that depression and withdrawal are common responses to a terminal 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.</li> <li> Create 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 their illness and when they die.</li></ul>Palliative care for brain tumours: Preparing your family

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