- The Familly of the Child with a Chronic or Complex Condition
- Adaptive tasks of Parents having children with chronic conditions
- Accept the child’s condition.
- Manage the child’s condition on a day-to-day basis.
- Meet the child’s normal developmental needs.
- Meet the developmental needs of other family members.
- Cope with ongoing stress and periodic crises.
- Assist family members to manage their feelings.
- Educate others about the child’s condition.
- Establish a support system.
- Impact of the child’s chronic illness
- Parents
- In addition to the stress of grieving for the loss of hope for a perfect child, parents are affected by whether or not they receive positive feedback from interactions with their child.
- Many parents feel satisfaction and fulfillment from the parenting role.
- For others, parenting may be a series of unrewarding experiences that contribute to feelings of inadequacy and failure
- Anticipated Parental Stress Points
- Diagnosis of the condition:
- Parents require considerable education while dealing with an emotional response.
- Developmental milestones:
- Times that children normally achieve walking, talking, and self-care are delayed or impossible for the child.
- Start of schooling:
- Particularly stressful are situations in which appropriate schooling will not be in a regular class placement.
- Reaching the ultimate attainment:
- Parents must handle situations such as realizing that ambulation will be impossible or that the child will not learn to read.
- Adolescence:
- Issues such as sexuality and independence become prominent.
- Future placement:
- Decisions about placement must be made when the child becomes an adult or when the parents can no longer care for the child.
- Death of the child
- Diagnosis of the condition:
- Parental roles
- Parenting a child with a complex chronic condition requires attending to the routine aspects of parenting with the added responsibility of
- Performing complex technical care
- Symptom management
- Advocating for their child
- Seeking and coordinating health and social services for their ill or disabled child
- These added responsibilities must then be balanced with the needs of other family members, extended family and friends, and personal health and obligations to minimize consequences to the overall functioning of the family
- The nurse can assist parents in avoiding role conflicts by providing anticipatory guidance early on.
- Teaching should address stressors often identified as having an impact on the marriage
- The burden of care at home assumed by primarily one parent
- The financial burden
- The fear of the child dying
- Pressure from relatives
- The hereditary nature of the disease
- Fear of pregnancy.
- Parenting a child with a complex chronic condition requires attending to the routine aspects of parenting with the added responsibility of
- Mother-Father Differences
- Mothers are often the primary caregiver and are more likely than fathers to give up their jobs to care for their children, often resulting in social isolation
- Often have greater needs for social support and positive appraisal of the situation than fathers.
- Fathers of children with disabilities struggle with issues that may be distinct from those of the mothers may think that their role as protector is challenged,
- This is because they do not know how to help and cannot protect their family from the seemingly overwhelming recurring problems.
- The extensive stresses in the family can leave fathers feeling depressed, weak, guilty, powerless, isolated, embarrassed, and angry.
- Fearful that they will lose control or be viewed as weak or ineffectual, however, fathers often hide their feelings and display an outward confidence that may lead others to believe that everything is fine.
- Fathers worry about what the future holds for their children, their ability to manage the increasing financial burden, and the daily disruptions of the entire family
- Mothers are often the primary caregiver and are more likely than fathers to give up their jobs to care for their children, often resulting in social isolation
- Single-Parent Families
- As the only parent of a child who may require extensive, sophisticated, and lifelong care, the single parent may feel an enormous burden.
- Available financial and emotional resources may already be stretched to the limit.
- A special effort should be made to assist the single parent in finding financial and support services that can ease the burden of care.
- Nurses can also assist the single parent in identifying helping roles that may be acceptable to relatives and friends.
- Siblings
- Most evidence shows a negative effect on siblings of children with chronic illnesses compared with siblings of healthy children
- Siblings of children with chronic illnesses report psychosocial problems more often than their peers
- Several factors increase the risk of negative effects for siblings of ill children.
- Responsibility for caregiving, differential treatment by parents, and limitations in family resources and recreational time are often the experiences of siblings of ill or disabled children
- Supporting siblings of children with special needs
- Promote healthy sibling relationships
- Value each child individually and avoid comparisons.
- Remind each child of his or her positive qualities and contribution to other family members.
- Help siblings see the differences and similarities between themselves and the child with special needs.
- Create a climate in which children can achieve successes without feeling guilty.
- Teach siblings ways to interact with the child.
- Seek to be fair in terms of discipline, attention, and resources; require the affected child to do as much for himself or herself as possible.
- Let siblings settle their own differences; intervene only to prevent siblings from hurting one another.
- Legitimize reasonable anger.
- Even children with special needs behave badly sometimes.
- Respect a sibling’s reluctance to be with or to include the child with special needs in activities.
- Value each child individually and avoid comparisons.
- Help siblings cope
- Listen to siblings to let them know that their thoughts and suggestions are valued.
- Praise siblings when they have been patient, have sacrificed, or have been particularly helpful.
- Do not expect siblings to always act in this manner.
- Acknowledge the personal strengths siblings have and their ability to cope with stress successfully.
- Provide age-appropriate information about the child’s condition and update it when appropriate.
- Let teachers know what is happening so that they can be understanding and helpful.
- Recognize special stress times for siblings, and plan to minimize negative effects.
- Schedule special time with siblings; have a friend or family member substitute when parent is unavailable.
- Encourage siblings to join or help establish a sibling support group.
- Use the services of professionals when needed. If parent feels that such a service is necessary, it should be provided in as vigorous a manner as a service for the child with special needs.
- Involve siblings
- Seek out ways to realistically include siblings in the care and treatment of the child with special needs.
- Limit caregiving responsibilities, and give recognition when siblings perform them.
- Develop a library of children’s books on special needs.
- Invite siblings to attend meetings to develop plans for the child with special needs (e.g., individualized educational program [IEP], individualized family service plan [IFSP]).
- Discuss future plans with siblings.
- Solicit their ideas on treatment and service needs.
- Have siblings visit professionals who work with the child.
- Help siblings develop competencies to teach the child new skills.
- Provide opportunities for siblings to advocate for the child.
- Allow siblings to set their own pace for learning and involvement.
- Promote healthy sibling relationships
- Parents
- Adaptive tasks of Parents having children with chronic conditions
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