When Your Child Is Sick: A Guide to Navigating the Practical and Emotional Challenges of Caring for a Child Who Is Very Ill - Softcover

Breyer, Joanna

Softcover

ISBN 10: 0147517583 ISBN 13: 9780147517586

Verlag: Penguin Publishing Group, 2018

Inhaltsangabe

An invaluable reference for parents of sick or hospitalized children by an experienced psychosocial counselor.

To many parents, it is hard to imagine a more upsetting reality than one where their child is hospitalized, severely sick, or terminally ill. In When Your Child is Sick, psychosocial counselor Joanna Breyer distills decades of experience working with sick children and their families into a comprehensive guide for navigating the uncharted and frightening terrain. She provides expert advice to guide them through the hospital setting, at-home care, and long-term outcomes.

Breyer's actionable techniques and direct advice will help parents feel more in-control of a circumstance that has upended their life. She alerts parents to key personnel in the hospital, gives dialogue prompts to help parents ask for the help they need, addresses the needs of their other children at home, offers advice on how to best utilize friends and family who want to help, includes stories from other families who have been there, and teaches coping techniques to help both parents and children weather the stress of prolonged illness and even death.

When Your Child is Sick is a valuable guide to managing the myriad practical and emotional complications of an impossible situation.

Über diesen Titel

Über die Autorin bzw. den Autor

Joanna Breyer was educated at Oxford and Harvard where she got her psychology doctoral degree in 1983. As a psychologist she worked with children with cancer and their families for over 25 years at Dana Farber Cancer Institute (DFCI) and Children's Hospital Boston. She worked in the David B. Perini Quality of Life Clinic for Survivors of Childhood Cancer for over 10 years. She is married to Supreme Court Associate Justice Stephen Breyer.

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Chapter 1

Entering the Medical World

If your child has to go into the hospital for a serious illness or accident, do not be surprised if you feel overwhelmed. Even if you are an experienced and terrific parent and your child has entered an excellent facility, the world of the hospital is very different from your world at home, where you are in charge. The experience can take over your life. You are dealing with practical challenges and many intense emotions-not only your own but also those of your sick or injured child, your partner, other family members, and your other children. It is hardly a wonder if you feel scared and worried.

If you have other children at home, you have to figure out how they will be cared for while your time and attention is devoted to your child in the hospital. If you are working, you may need to make arrangements so you can be absent when your child needs you in the hospital or when your other children need you at home. Financial concerns may add to your worries. You will likely feel pulled in a hundred different directions. Add to that the challenge of learning about the new world you have unexpectedly entered, and it can feel absolutely crushing. Becoming familiar with this world is key.

In this chapter I will describe the roles of the different staff you will meet in the hospital and ways to communicate effectively with them. I suggest ways you can help your child and yourself get accustomed to the facility. I'll also discuss some of the practical challenges that most parents face and suggest first steps to take to handle them.

Getting to know the hospital staff

One of the first and best things you can do to understand your child's situation is to get to know the medical staff and make them your partners in helping your child.

You will be confronted by a daunting cast of characters. Following is a general description of the people you are likely to meet and their role in caring for your child:

The doctors are in charge of your child's overall medical care. You likely encountered several doctors during your child's hospital admission and diagnosis, particularly if the admission was through the emergency room. After you are admitted, each new doctor may continue to ask you very similar questions about your child's symptoms and his prior medical history. The doctors have the best intentions about clearly communicating with you, but they may be covering many patients or use medical language that can be difficult to understand. Most doctors will be happy to repeat what they said in a nonmedical way because they want you to know what is going on. Ask each doctor what his or her role is so you can understand his or her place in your child's care. In a teaching hospital, especially, the number of doctors and nurses who visit can be confusing and irritating. A teaching hospital has a hierarchy of doctors at different levels of training:

Medical students in their early medical training

Residents in their fourth or fifth year of training

Fellows beginning their specialized medical training, having completed their residencies

The attending doctor who is in charge

Specialists who will be consulted briefly only about a particular problem

The doctors are usually on rotating schedules. Find out which doctor is your child's primary doctor, and what the possibilities of continuity of care are both during your child's hospitalization and after discharge. Tips on how to get the information you need from the doctors and nurses follow in the section "Communicating with your Medical Team" on page 8.

In some hospitals a nurse practitioner (a nurse with several years of extra clinical training) may be the primary medical provider who oversees your child's treatment. If so, he or she will be supervised by a senior doctor.

Nurses are responsible for the ongoing care of your child. You will see much more of them than you will of the doctors. Your child's nurse will give your child his medications and do some of the more complicated regular medical care required like dressing changes or postsurgery care. Nurses can work eight-, ten-, or twelve-hour shifts depending on the hospital. Over several weeks you will meet many nurses.

Some hospitals assign primary and secondary nurses to a child's team, but many hospitals do not. Often your child (and maybe you) will have favorite nurses, and you might wish that a particular nurse could be assigned to your family each time she comes in. But that may be difficult to arrange because of conflicting considerations in assigning nurses, such as the need to balance clinical care requirements.

There may be one or two nurses you feel do not work well with your child. If your child regularly appears unhappy when that nurse comes in or if you have repeatedly found this nurse not responding to requests you have made about his or her treatment of your child, then bring up your concerns with the nursing supervisor or the charge nurse, who is the head nurse in each shift. They will try to help, probably first speaking to the nurse concerned and, if that makes no difference, seeing what flexibility in scheduling they have to ensure that nurse is not assigned to your child.

Nursing assistants may help nurses by taking temperatures and blood pressure and helping with other routine tasks like bathing.

Psychosocial clinicians, including a social worker, resource specialist psychologist, and/or psychiatrist may be on your child's medical team or available for special consultation about the emotional aspects of your child's care. The role of each will vary somewhat from hospital to hospital, as will the extent of psychosocial support available. Services can include providing ongoing emotional support, giving valuable information on available resources, being a liaison with or member of the medical team, providing child therapy, developing a behavioral plan to gain your child's cooperation with treatment, and other specialized consultations on pressing emotional issues. In most hospitals, a psychosocial clinician, usually a social worker, sometimes a psychologist, will meet with you soon after you come to the hospital and will ask you about your family and who is available to help through this crisis. This clinician will likely ask about your and your child's most pressing needs and can give you useful information about the hospital and available resources. He or she is there to offer practical help and emotional support. You may find some of the questions repetitive, even intrusive, but the information you give him or her will allow the medical team to be more respectful and understanding of your wishes and concerns. You are likely to be asked about your religious affiliations, family values, and financial circumstances. If you let the clinician know anything in your child's history (or your own) that could make it particularly difficult for your child or you to be in the hospital, you may avoid considerable discomfort and misunderstandings with the medical team. See the box below.

Important family histories to share with your medical team

Following are examples of information to share with your medical team so that they will have a more complete understanding of how to interact with your family:

A parent or another close family member who has just gone through a medical trauma, so the medical team will understand your intense reaction.

A hard family event that involved considerable conflict, such as a divorce, which could affect how family members deal with one another, so the medical team can arrange to give separate updates to different family members.

A family member who has a particular medical or psychological problem that might affect his or her behavior in the hospital, such as depression, alcoholism, or drug use, so inpatient staff can...

Details zur Ausgabe

• Verlag: Penguin Publishing Group
• Erscheinungsdatum: 2018
• Sprache: Englisch
• ISBN 10: 0147517583
• ISBN 13: 9780147517586
• Einband: Taschenbuch
• Auflage: 1
• Anzahl der Seiten: 448
• Kontakt zum Hersteller: Nicht verfügbar
• Verantwortliche Person: Nicht verfügbar