Detailed Notes on Chronic Illness and Family Impact

Impact of Chronic Illness, Disability, or End-of-Life Care for the Child and Family

Scope of the Problem

• Increasing the viability of preterm infants due to medical advances.

• Portability of life-sustaining technology enhances care options.

  • tracheostomy, ventilator, gastrostomy, ventriculo-peritoneal shunt, parental nutrition

• Life-extending treatments contribute to the rise in chronic health issues among children.

• Increasing numbers of children are being diagnosed with complex and chronic diseases.

Trends in Care

• Developmental Focus: Emphasis on stages of child development and age-appropriate interventions.

  • attention is directed to normalizing experiences, adapting the environment and promoting coping skills

• Family-Centered Care: Involvement of family in care decisions and processes.

• Communication: Effective communication between families and healthcare providers is essential for trust and collaboration.

  • nurse should be honest and clear with the parent when delivering information

  • ensure the families needs are met during discussions related to the child

• Therapeutic Relationships: Building strong relationships enhances care outcomes.

• Cultural Considerations: Understanding cultural backgrounds impacts care delivery.

• Shared Decision-Making: Families participate in medical decisions, fostering a sense of control.

• Normalization and Transition: Strategies to integrate care into the child’s everyday life, facilitating smoother transitions.

  • refers to the effort family members make to create a normal family life, their perceptions of the consequences of these efforts, and the meanings they attribute to their management efforts.

Impact of Chronic Illness on the Child

Parents

• Parental Roles: Shift in family dynamics and responsibilities.

  • measures to help decrease the stress of parenting a child with CCC include providing mental health support and teaching parents how to deal with stressors.

• Mother-Father Differences: Gender differences in coping and caregiving strategies.

• Single-Parent Families: Unique challenges faced by single parents in managing caregiving.

Siblings

• Impact on dynamics and emotional well-being of siblings of affected children.

Concurrent Stresses Within the Family

• Additional Stressors: Financial burden, emotional strain, and changes in family roles.

  • nurses and social workers can help review various options for financial assistance: insurance, manged care. medicaid; supplemental security income

• Coping Mechanisms: Strategies families utilize to manage stress, such as seeking support networks and professional help.

  • approach behaviors are coping mechanisms that result in movement toward adjustment and resolution of the crisis

    • ask for information on diagnosis and child present condition

    • seeks help and support from other.

    • acknowledge and accepts child’s awareness of diagnosis and prognosis

    • express feelings, and realize the reason for the emotional reaction

  • avoidance behaviors result in movement away from adjustment and represent maladaptation to the crisis.

• Parental Empowerment: Encouraging parents to recognize their strengths and enhance their coping skills.

Assisting Family members in managing feelings

• shock and denial

  • Denial becomes maladaptive only when it prevents recognition of treatment or rehabilitative goals necessary for the child’s optimal survival and development

• adjustment: Gradually follows shock and is usually characterized by an open admission that the condition exists

  • Guilt is often greatest when the cause of the disorder is directly traceable to the parent

  • self accusation

  • overprotective

  • rejection

  • denial

  • gradual acceptance

• reintegration and acknowledgment

• establishing a support system

Developmental Aspects of Care

• Five Distinct Patterns of Coping: Different approaches to handling stress and grief.

  • develops competence and optimism

  • feels different and withdraws

  • is irritable, is moody and acts out

  • complies with treatment

  • seeks support

• Hopefulness: Fostering positive outlooks amidst challenges.

• Health Education: Empowering children and families through knowledge about their conditions.

  • Information should not be given all at once but should be timed appropriately to meet children’s changing needs,and it should be described and repeated as often as the situation demands

Nursing Care of the Family and Child With a Chronic Condition

• assessment

  • available support system: status of marital relationship, ability to communicate, alternate support system

  • perception of the illness or disability: previous knowledge of disorder, imagined cause of disorder, effects of illness or disability on family

  • coping mechanism

  • available resources

  • concurrent stresses

• Support at Diagnosis: Critical to provide ongoing emotional and practical support post-diagnosis.

  • Parent-to-parent support: A parent self-help group can promote parent-to-parent support. Parent groups are rich resources for information.

• Advocacy for Empowerment: Nurses play a key role in uplifting families and encouraging an active role in care.

• child

  • Children are encouraged to express their concerns rather than allowing others to express them for them.

Educating About Disorders and Health Care

• Addressing unique health care needs, dietary restrictions, and safety adaptations (e.g., transportation).

  • basic trust, separation from parents, beginning independence

Developmental Milestones

• Early Childhood: Building trust, initiating separation, and fostering independence.

• School Age: Focus on industry and extracurricular activity involvement.

• Adolescence: Emphasizing independence and autonomy as priorities during transition.

  • Independence or autonomy, however, is a major task for the adolescent as planning for the future becomes a prominent concern

Establishing Realistic Future Goals

• Cultivate realistic vocations for the child with chronic illness or disabilities

• Prolonged survival leads to new decisions and problems

  • independent livings

  • marriage, employment, insurance coverage

  • reproductive decisions

Perspectives on care of children at the end of life

• principles of palliative care

  • pain and symptom management

• decision-making at the end of life

  • ethical consideration

  • physicians, the health care team

  • parents

  • The dying child:

• treatment options for terminally ill children

  • hostipal

  • home care

  • hospice is community health care organization that specializes in the care of dying pt by combining the hospice philosophy with the principles of palliative care.

Nursing care of the child and family at the end of life

• fear of pain and suffering

  • pain and symptom management

  • parents’ and siblings’ need for education and support

• fear of dying alone or of not being present when the child dies

• fear of actual death

  • home deaths

    • in the final hours of life, the dying pt’s respirations may become labored, with deep breaths and long periods of apnea, referred to as Cheyne-Stokes respirations

  • hospital deaths

    • after a child’s death, the family should be allowed to remain with the body and hold or rock the child if they desire

Organ of tissue donation and autopsy

• meaningfulness of acting to benefit another human being

• common questions asked by families

• sensitive approach

• organ donation: legislated in many states

  • skin, corneas, bone, kidney, heart, liver, pancreas, and their removal doesn’t mutilate or desecrate the body or cause any suffering

• unexplained or violent death

  • autopsy may be required by law

grief and mourning

• Grief is a process, not an event, of experiencing physiologic, psychologic, behavioral, social, and spiritual reactions to the loss of a child.

• highly individualized

• anticipatory grief may be manifested in varying behavior and intensities and may include denial, anger, depression, and other psychological and physical symptoms

• mourning process

• recognitions of when grief becomes “complicated” or “abnormal”

• parental grief

• sibling grief

  • they grieve in spurts and can be emotional and sad in one instance and then, just as quickly, off and playing

  • Children express their grief through play and behavior

Nurses’ reactions to caring for dying children

• most stressful aspect of nursing

• response similar to that of family members

• self-care measures

• attend funeral services