Children With Chronic Illness and Disabilities

Children with exceptional health care needs are those who have or are at risk of having a chronic medical, developmental, behavioral, or emotional disorder and who need more health services than typical young children do. Children who are dying or who have a terminal illness need specialized care or have particular health needs.

 Children with chronic illness and disabilities

The biggest cause of disability and chronic illness in the globe is aging. As medical research and technology develop, more children are surviving prematurity, congenital abnormalities, accidents, and illnesses that would have been deadly in the past, leading to an increase in the number of children with chronic illnesses.

Terminologies:

Chronic illness - A chronic illness is a persistent, more than three-month-long ailment that interferes with day-to-day functioning.

Disability- The term "disability" is a general one that includes impairments, activity constraints, and participation limitations. A person's ability to carry out an action or perform a task is limited by an impairment, such as the inability to read or move around, while a participation restriction is a problem they encounter when participating in life situations. An example of an impairment would be a cataract, which prevents the passage of light and the sensing of form, shape, and size of visual stimuli (such as difficulty in access to school, health service use, etc). Disability is a complicated phenomenon that results from the interaction between a person's physical characteristics and those of the society in which they live.

Technology dependent/assisted - The use of technology, such as mechanical ventilation, wheelchairs, aided communication, and feeding tubes, either temporarily or permanently, to make up for a loss of function or activity by the user.

Children who are chronically ill or disabled have particular healthcare needs. Chronic sickness and disability can be brought on by a wide range of disorders. Some examples of such illnesses include cystic fibrosis, asthma, diabetes mellitus, food allergy, sickle cell anemia, hemophilia, juvenile idiopathic arthritis, genetic disorders, myelomeningocele, neuromuscular disease (cerebral palsy, muscular dystrophy), down's syndrome, mental retardation, epilepsy, learning disability (dyscalculia, dyslexia), autism, leukemia and other malignancies, The child's physical, psychological, and cognitive development may be impacted by a chronic illness.

Depending on their chronic condition and impairment, children with chronic sickness or disabilities need a variety of health and related services. They require ongoing, complicated medical attention. Special needs and services required for children with chronic illness and disability may include, but are not limited to:

• Medication prescriptions.
• Rehabilitative therapies (eg, occupational therapy, physical therapy, speech therapy)
• Assistive devices/ medical equipment (eg, wheelchair, insulin pump, supplemental oxygen, renal dialysis, orthotics)
• Vision care and/or eyeglasses
• Hearing care and/or hearing aids
• Diapers and other home hygiene supplies (catheters, colostomy bag)
• Preventive dental care and dental treatment
• Home health care services (home health aides/home nursing).
• Nutrition therapies (eg, feeding tubes, speech/swallowing therapy) or special diets
• Referrals for specialty medical services, educational services, or social services
• Behavioral or mental health care
• Hospice care and/or Respite care (a short term or temporary care of the sick or disabled child by a "home care health worker" for a few hours or weeks, in order to provide short term relief to the primary caregiver is called respite care.)
• Family mental health counseling and family therapy.

When a child is told they have a serious, long-term disease or handicap, family members react in a variety of ways. They could see the child's illness as an adversary to be defeated, a punishment, a symbol of weakness, a social shame, or a loss that cannot be recovered from. They can be afraid and worried about losing body function and passing away. A child and family may experience panic due to fear and worry brought on by a chronic condition or handicap, leaving them psychologically susceptible and unable to respond to the situation appropriately.Stress is less noticeable if a person is able to grow in their ability to maintain control over their circumstances or if they begin to believe that while their chronic problems are unavoidable, they are managed. However, stress can become overpowering if they are unable to solve the issue or if it is too big for them to handle.

Effects of chronic illness and disabilities on Child

The difficulties a child with a chronic disease and disability confronts prevent them from growing and developing normally. For a smooth transition from one stage to the next, it is necessary to achieve a number of age-appropriate behaviors, abilities, and developmental activities that are connected with each developmental stage of life. At different phases of development, chronic disease or a handicap might prevent a person from achieving typical developmental goals like independence, autonomy, self-control, communication, and social skills. Children start developing the social and communication skills necessary for successful interpersonal interactions in their early years. Children may be denied nurturing by a regular and loving caregiver if they are admitted to the hospital frequently or for an extended period of time owing to a chronic disease or handicap. Their regular activities, social interactions, and surroundings exploration may be hampered by the physical restrictions imposed by the illness or therapy. The inability to accomplish the abilities that are typically valued at their developmental stage due to physical or cognitive limitations during later childhood may have an impact on how accepted they are by their peers. Increased school absences brought on by a chronic illness or frequent hospitalization preclude regular peer interaction, which may reduce social interactions. In the life of a chronically unwell child, discrimination in romantic relationships and social marginalization are frequent occurrences. Some families overprotect their children in an effort to shield them from harm and mental suffering; this can even lead to social isolation, which lowers the child's self-confidence.

All aspects of a child's life, including social and family bonds, daily activities, academic success, economic well-being, and leisure and employment opportunities, are impacted by a chronic disease or handicap. Children were subjected to a great degree of stress as a result of having to deal with changes in their usual routines (habitual lifestyles), disruptions of physiological functions, pain or discomfort, and the potential loss of roles, independence, and financial security. Any chronic condition or impairment necessitates some modification of the child's way of life, values, beliefs, actions, and goals in order to accommodate its manifestations. They must acknowledge that their former way of life has altered.

Children who have a chronic disease or impairment must be taken into account with other healthy children in the context of their developmental stage. Despite their illness, they should be motivated to move through each stage of growth as normally as possible. The kid can develop the skills and talents required for eventual integration into the larger world by being encouraged in as many ways as possible to engage in social interactions and activities. If they are denied emotional, social, educational, or employment opportunities, their failure to handle the ensuing problems of life will cripple them more than the constraints imposed by their disease or disability.

Management of child with chronic illness and disabilities

For their well-being, children with chronic illnesses and disabilities rely on a variety of medical and community services (survive). They require extensive and coordinated services from a range of professionals to guarantee the best possible growth and development. To address the child's physical, educational, psychiatric, and social support requirements, these specialists should collaborate. Nursing management emphasizes screening and continuing assessment of the child, home care, care of the kid who is dependent on technology, education and support of the child and family, and resource referral in addition to case management and advocacy.

Additionally, nurses are in a unique position to assist patients in regaining control over their circumstances through knowledge and shared decision-making, which can be a crucial step in easing anxiety and accelerating recovery. The approach to care of chronically ill and disable child and their family are as follows:

• Patient-and Family-centered care (PFCC):
  The patient -and family-centered care is a core principle for caring for the child with chronic illness and disability. The family is the child's primary source of strength and support. Therefore should be considered as an equal partner in shared decision making. PFCC focuses on the child needs, family needs, and the concerns of health care providers who are involved in child care. Features of patient -and family. centered care include:
  • To enable families to effectively engage in a child's treatment, give patients and their families accurate, unbiased information.
  • Respect their traditions, values, and beliefs by paying attention to the patient and their family.
  • Be adaptable with your methods and procedures. Adapt nursing interventions and services to the needs, values, and beliefs of the community.
  • assisting patients and their families in a formal and informal manner, either directly or indirectly
  • negotiating the desired medical results.
  • Making medical decisions in collaboration with the patient and family as a member of the health care team that best suit their needs, talents, and values.
  • Patients and families should be encouraged to engage in decisions about their own health care by recognizing and promoting their strengths.
• Routine health care maintenance:
  For promotion of health and prevention of diseases, routine health care maintenance for children with chronic illness and disability includes: immunizations, screening and dental care.
  • Immunizations:According to the National Immunization Program's recommendations, all kids with chronic illnesses and disabilities should have their vaccines (NIP).
  • Screening and surveillance: All of these kids need to get the regular screenings that are advised for kids, like developmental screening and growth tracking (Road to Health chart) (assessment of developmental milestones). Additionally, because they are more likely to acquire other acute co-occurring illnesses, they may frequently require more frequent screening for certain ailments. These illnesses must be promptly detected and properly treated. Additionally, it is crucial to screen children for visual and hearing impairment, dental issues, developmental issues, behavioral issues, and mental health issues. If any of these issues are discovered, the child should be directed to professionals for additional testing, counseling, or therapy. Compared to children without disabilities, children with intellectual disabilities, behavioral and mental health issues, and conduct disorders are more likely to experience physical and sexual abuse. Therefore, nurses and other healthcare professionals should keep an eye out for any indications of child abuse or neglect, and if necessary, refer the child to the appropriate care.
  • Dental care: Children should have regular dental exams because they have more unmet dental care needs than other healthy children.
• Promotion of optimal growth and developmental of the child:
  Patents should be provided with age-appropriate anticipatory guidance, to promote optimal growth and developmental of the child. Anticipatory guidance includes:
  • Inform the parents about the impact of a child's illness on their growth, conduct, capacity for everyday living, and family life.
  • Encourage children to acquire abilities that are appropriate for their age and give them opportunities to enjoy their senses, especially if they are newborns.
  • Promote independence and self-help skill mastery. based on the kid's developmental stage and level of handicap, to assist the child in becoming more independent and taking on increasing levels of responsibility for self-care.
  • To the best of his abilities, encourage the child to engage in physical and social activities, including participation in age-appropriate sports, music, drama, or art activities; student clubs; and skill-development activities (such as computer skills) to encourage adjustment and acceptance of limitations.
  • Encourage the child to interact with others their own age so they can form friendships.
  • Encourage kids to attend school on a regular basis and assist them in making up any missed assignments due to illness or hospitalization.
  • To the extent that their condition permits, encourage the parents to punish the child in the same manner as their siblings and to adhere to the same laws and regulations. Talk to the parents about the harm that excessive child protection does to the child's development.
  • Inform the parents that these kids require the same regular immunizations, diet, screenings, education, health care, and rehabilitation as other kids do.
  • Depending on the child's level of comprehension, explain the sickness or impairment, potential for a relapse or exacerbation, and the course of treatment.
  • Remind the youngster that their disease or impairment is not a result of any wrongdoing on their part and is not their fault.
  • To help the youngster feel less unusual from other kids, encourage them to dress in age-appropriate regular clothing rather than staying in their pajamas.
  • Talk with teenagers about subjects including gender, sexually transmitted diseases, and sexual orientation.
• Enhancing family adjustment with the child's condition
  • While parents are striving to cope with the diagnosis, provide them a lot of emotional support, expert advice, and details on the child's condition.
  • Give family members the chance to express themselves and their guilt. the emotions, including worries and rage
  • When providing care and when discussing how the child's disease has affected the family, keep a positive but realistic attitude about the child's developing difficulties.
  • Assist the parents in identifying the child's potential (both strengths and weaknesses), in setting age-appropriate goals, and in enforcing proper discipline.
  • Include the parents in the planning process for the intervention; ask them for guidance on the child's routine, care preferences, and special requirements.
  • Give the kids and parents opportunity for learning, support, and encouragement.
  • Give the family support systems and resources.
  • Encourage parents to make any necessary changes to their living arrangements.
  • Help the family encourage the child's proper development by providing guidance and support.
  • Encourage and aid the family in adjusting to the condition for the youngster.
  • When possible, encourage family members to take the initiative to schedule leisure activities.
  • Since siblings of children with special needs also experience chronic stress, it is important to monitor their psychosocial functioning, stress levels, and general well-being.
• Promoting self-care:
  • Encourage the kid to engage in self-care practices that are age- and disability-appropriate.
  • To encourage independence or the ability to care for oneself, assistive gadgets (such wheelchairs and crutches) can be made available.
  • When a youngster is having trouble finishing a chore, help him or her out by helping them with self-care activities instead of finishing it for them. Don't demand that the child execute duties that are above his or her capacity.
  • Always make sure that a youngster is well rested before engaging in any energy-demanding activities to prevent weariness. Even if a youngster cannot accomplish a task entirely, they should always be given sincere praise and rewards for trying.
• Prevention from Injury:
  • As safe an environment as you can. Always keep an eye on the child at all times. When necessary, provide the child with protective gear (e.g., helmet for head banging).
• Ongoing assessment and Referral:
  • Children with numerous chronic health issues require regular, thorough evaluations to identify their unique needs and guarantee their physical and mental welfare.
  • They need referrals for specialty care since they may need a range of services to meet all of their needs, (neurology, child psychologist, gastroenterology), in addition they may need to referrals for: early intervention or special education services (ensuring that the child receives educational services to maximize educational abilities), rehabilitative services (eg, physical therapy, speech therapy, occupation therapy, nutrition counseling individual or family counseling, social worker, behavior therapy, legal support fo guardianship and power of attorney when indicated, and palliative or hospice care).