The child's story demonstrates its desire that other network members also know how to take care of her illness because she could continue her life in a qualified way, no absences, especially those related to school. Parents of the child are indispensable caregivers, however, mothers are identified as the main source of social support. Few studies demonstrate the effective involvement of the father in the care directed tochildren.
Thus, it will be easier to prevent hospitalizations. Each meeting between health professionals, children with chronic illness and their families can be transformed into a therapeutic point of care, promoting the role of those involved in this process. Therefore, effective health education practices must take place, overpassing vertical knowledge, which is guided by a unilateral provision of explanations and giving rise to spaces for reflection and the exchange of experiences and knowledge, the dialogical relationship with qualified listening, the appreciation of the knowledge of the child and family.
In addition, we need to enable meetings between those who have similar experiences, so there is exchange and construction of knowledge between them. Peter Pan states that he receives informational support necessary for care therapy from some health professionals. For him, the support received is a guarantee of survival.
I get [support] in the hospital. The doctor and the nurse give me the right things for me to control my diabetes. Children who experience chronic illness can understand their disease and make decisions regarding their care process. The health team needs to have that understanding and adopt strategies that enable the active participation of children in the control disease.
The daily care of the child, carried out by family members, as well as the concern and willingness to accompany them to health services when they need care, are all mentioned as offering social support, by effective supportive bonds, who are available to help and to be with the child to face the chronic condition with less difficulty. Her mother [child's drawing] gives her a bath. When I was away who took me was my mother, but for other [city hospitals where she lives] , she [the cousin] used to take me Rapunzel - 11 years.
The effective participation of the family in the daily care provided to a child with chronic illness is essential. The proactive approach is a way to facilitate coping with chronic disease in childhood, because it promotes to meet the demands that arise. The perception of support received by the child for further treatment covers different dimensions. The action of providing conditions for the trip to the state capital for medical consultations, which take place routinely in chronic condition, is also identified as a social support.
He [stepfather] got the car from his brother, we came [hospital] me, him and my mother Rapunzel - 11 years ; in the city, they give the transport [to go to medical consultations]. The financial impact brought by the disease, commonly affects, the aggravation of the situation experienced, and one of the difficulties in chronic condition is the increased costs related to transport for the treatament.
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So it is important that there is always a source of social support to minimize the family expenses with treatment and to promote appropriate follow-up of treatment and continuity of care. Support for the outpatient treatment is not limited to the offer of transport to medical consultation, but also extends to emotional support from extended family members, such as the grandmother, who, in an act of love and care, helps the child to wake up and gives him the strength to get up and face adversity, such as long and uncomfortable trips.
When the family support is satisfactory, it generates courage and comfort, it allows well-being and improves quality of life. Plans for the future must remain part of their lives, because they move and give energy to cope with the health problem that they will have to continue living with. This kind of support is essential for school children so that they feel encouraged in this process. The emotional support of parents, especially the mother, comforts, satisfies and brings well-being and happiness to the child.
When strength, comfort and tranquility are offered, hope is renewed, and she is strengthened to continue to live with the disease, successfully facing the imposed implications. The mother gives strength, [ She told him the pain he was feeling would pass.
It feels good, [ In chronic illness, emotional support is even more important due to the stress caused by changes imposed by chronicity. In this context, the feeling of helplessness increases, and the need for support is evidenced. Emotional support is considered beneficial because it minimizes the suffering when faced with difficulties.
Without it, it is much more difficult to face the disease, for this reason it is necessary to help people who are considered reliable and have a loving relationship with the child. The special attention and concern dispensed by members of the social network, such as school friends, the child's diet, are recognized as a way to offer support in fighting the disease.
They [school friends] care about me, they say: 'eat so that you won't be sick' [ They take care of me, say, 'do not eat too much salt, because of your illness' Rapunzel - 11 years. The solidarity attitude of a friend gives happiness to the child. She [school friend] is the only one who does not take candy to school so I do not see her eating it. I feel more cheerful, because she is my best friend Jasmine - 11 years.
How to Help a Child With Chronic Illness: Tips from a Child Life Specialist
One study 19 points out that the sweets that are brought to school, brought from home or purchased by friends, make it difficult to manage the disease in the school environment. The offer and sale of healthy food at school canteens nationwide, according to the recommendations by the ministerial decree of the Ministry of Health and Ministry of Education, n. The encouragement o family and significant others in the social network can strengthen health guidelines given to children with chronic disease and promote further accession, both recommendations of proper diet and medicinal therapy.
Friends are also appointed as members of the social network of the child, offering emotional support as necessary for them to overcome the difficulties faced in the course of the disease. In times when the pain was present in the lives of children, friends appeared as a source of emotional support, with the ability to minimize the feelings at that moment. Consoling and play help them to forget the implications imposed by the disease, providing happiness and improving coping. Friendship is already s lot [ When I suffer, when I play, [ He was happy Jasmine - 11 years. There are some friends who experienced the same disease in their childhood.
By experiencing what chronicity requires of them, sharing experiences, exchanging knowledge and feelings and putting themselves in the other's place as a way of understanding the situation. I had a girl in my room, she had a disease near the kidneys [ To pass the time, in recess [between classes] , It oldher about my life, what happened [the disease] and she talked about her. The interaction between those who experience similar situations creates a supportive relationship, because, through awareness, sharing experiences and experiencing suffering, the interest in helping and caring for others grows.
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This process forms a strong networkofsolidarity. The child who experiences chronic disease often needs to miss classes. And to avoid losses in school performance, support of friends in relation to content and activities is needed.
They are friends [from school] that when the person needs, they help when the person is missing something [from lass] , they help, tell you what happened in the class Rapunzel - 11 years. Facing the disease would be more difficult if the children affected by this type of illness did not have the contribution of friends. Therefore, friends help children shift the focus from the disease. The child needs to continue his daily life even with the existence of the disease. They need to be "a child", a social being that relates in different environments.
Whether through school activities, either through play, she keeps exercising actions specific to childhood, such as playing. My mother is playing with me [ I am good, I feel cheerful Chico Bento - 11 years ; she [mother] plays with me. Health professionals also participate significantly in this type of support, imparting good feelings, smiles and joy to the children.
It details the benefits of family involvement in care, identifies specific strategies for increasing and improving family involvement and goes over three case reports of family intervention programs. This overview from the National Conference of State Legislatures details information on different state family medical leave laws, including requirements and eligibility. This online database created by the U. Administration on Aging provides a location-based search to find services for senior citizens and their families.
Created by the American Institute of Certified Public Accountants and the California Society of Certified Public Accountants , this fact sheet focuses on how to prepare for and weather the financial struggles that may come from providing care for aging parents. The resource was developed by the Michael J.
Prepared by licensed clinical social worker Sophia Sandoval-Meyer and presented by Kids Konnected and FCancer, this document includes specific coping activities broken down by age group. This picture book uses a creative story and colorful illustration to explore the concept of an invisible illness for children to understand.
It also explains the roles of various hospital staff members in a way that children can understand. If a child has a serious chronic illness, money may be the last thing a parent wants to worry about. But unfortunately, illness can pose serious financial challenges. Created by Global Genes, a nonprofit dedicated to aiding those with rare diseases, this toolkit features practical information about caring for the whole family, dealing with health insurance and understanding various medical devices. Written by a mother and developed by the nonprofit Bateman Horneman Center, this resource offers advice for aspects of parenting such as receiving school accommodations, creating a support system and seeking medical advice and treatment options.
It addresses hard questions, such as how to tell a child about their diagnosis, and lists advice at the end of each chapter. This webpage describes programs that the Dana-Farber Cancer Institute has implemented to support healthy siblings.
Helping Children Through Chronic Illness
It also features a video created by and for siblings to explain some of the experiences and feelings that siblings of children with chronic illness might face. This document from the Sibling Support Project features testimonials from kids with a chronically ill or disabled sibling about what kinds of behaviors and conversations helped them feel loved and cherished by their families and communities.
This webpage from Siblings Australia lists some of the most common issues that arise for siblings of children who are chronically ill. Being aware of such pitfalls and watching out for them can help parents to best take care of all their children. Sibshops are workshops created by the Sibling Support Project to connect kids who have a sibling with a chronic illness with one another. It features a guide to constructive thinking for families as well as a list of sibling support groups.
This picture book by Christina Beall-Sullivan is written for healthy siblings with a chronically ill brother or sister. It addresses a variety of emotions siblings might feel and can help facilitate positive family communication.
This picture book for young children tells a story that grapples with the complex feelings children can face when their sibling is ill. CLIC Sargent, a UK-based charity serving children and families with cancer, features a webpage covering how you might feel and what to do if your grandchild is diagnosed with cancer. This toolkit from the National Multiple Sclerosis Society provides information on a wide variety of practical and emotional aspects of caregiving.
While the guide focuses on specific MS-related challenges, much of the instruction included may be useful for any chronic illness care partner. The Michael J. The Well Spouse Association, a nonprofit that advocates for and assists those caring for chronically ill or disabled spouses, offers a searchable database of support groups for spouses across the country. Part memoir and part survival guide, this book was written by William July and Jamey Lacy July, a couple who face a severe chronic illness. Community health workers are people who serve in public health roles that are specific to their particular community.
This guide from the CDC offers background knowledge on common chronic diseases and how CHWs can help address and prevent them. The National Association of Chronic Disease Directors presents podcast-style audio lectures for care professionals to learn more about various aspects of chronic disease. They focus on the future of chronic care and explore new innovations in the field. Once again, our community has the ability, if it has the will, to reallocate resources toward the prevention of toxic stress in children and families. Choosing not to do so means choosing to pay for negative outcomes on the back end, a wasteful expense for our community in both human and economic terms.
The brain is the primary stress organ: It is responsible for activating, monitoring and shutting down the body's reactions to stress. Infants' developing brains are particularly vulnerable; babies are affected by stress even in the protective environment of the womb. Since maternal cortisol levels affect the developing fetus, a mother's level of stress is directly related to the well-being of her baby. Positive and tolerable stress levels are safe, but toxic stress increases the risk of preterm delivery, low birth weight and other complications.
It is also associated with impaired mental, behavioral and motor development in infancy. This new way of thinking about the origins of adult health outcomes has important implications for policy. Promoting public health and reducing health disparities require solutions that target children's earliest years.
It is clearer than ever before that health, achievement and success have their roots in the first months and years of life. Reducing adversity and stress in early childhood should be a key goal of efforts to improve the lives of children. The Dangerous Part of Stress is the Physical Response In this context, "stress" doesn't refer to a worried or anxious state of mind, but rather to the body's physical responses to negative circumstances.
Stress is not Always Dangerous Positive stress is a normal part of learning and development. It is our collective responsibility to make education on how to manage these inevitable life events one of our highest priorities In contrast to tolerable stress, toxic stress refers to persistent, unhealthy amounts of stress caused by chronically stressful conditions without the protective benefits of healthy caregiving.