NURS 2864 - Chronic Illness, disability, and end of life care

What education should be provided to an affected child with a chronic illness?

The child should receive developmentally appropriate education about their illness/disease process, treatment plan, and prognosis, while still prioritizing their growth and development.

What emotional reactions may an affected child have to chronic illness?

Children may experience grief, sadness, worry about their family, altered body image, low self-esteem, and feelings of being “different” from peers.

How does chronic illness impact a child’s developmental milestones?

Children with chronic illness may struggle to attain expected developmental norms due to physical, emotional, or social limitations.

What areas of a child’s daily life are commonly affected by chronic illness?

Schooling, socialization, and play may all be altered or limited by chronic illness or treatment demands.

What are common challenges associated with disability and chronic illness in children?

Many children live at home with technology dependence, inconsistent nursing availability, and reliance on parents as primary caregivers.

Why are parents considered first-line caregivers for children with chronic illness?

Parents carry the majority of the caregiving workload and experience grief, stress, and caregiver burden (Box 36.3).

How can chronic illness affect siblings in the family?

Siblings may experience anger, jealousy, sadness, resentment, or feelings of being overlooked due to the ill child’s care needs.

How can chronic illness strain family relationships?

Marriage, parent-child, and parent-sibling relationships may become strained (Box 36.2), making strong family-centered care essential.

Why is family-centered care crucial for families of chronically ill children?

Care must meet both the family and patient at their developmental levels, which are fluid, while supporting coping and building trusting relationships from the time of admission.

Why are parents considered experts in their child’s health?

Parents know their child best, and they must be valued as key team members throughout the care process.

When should the palliative care team become involved?

Palliative care involvement should occur EARLY in life-limiting diseases, including congenital anomalies, disorders related to prematurity, respiratory distress syndrome, malignancy, injuries, suicide, cardiac disease, renal disease, and degenerative neuromuscular disorders.

What does it mean to decide “when” to shift toward palliative care?

It means acknowledging that care is non-curative or life-prolonging but causes suffering, and ensuring that ongoing care prioritizes comfort, quality of life, and meaningful time with family.

What continues even after the decision to shift to palliative care?

Care continues to focus on relieving pain and suffering, maintaining comfort, and supporting the child and family without hastening death.

What is the goal of transitioning from curative to palliative care?

To provide optimal symptom management, reduce pain and suffering, and maximize remaining quality of life.

Who has the authority to decide “when” to shift care goals for a child?

Parents, who experience grief in recurring waves and must navigate cultural, religious, social, and advocacy factors.

What role does the child play in decision-making?

Children participate through developmentally appropriate assent, while legal consent remains with guardians unless the child is of legal age.

What is shared decision-making in the context of chronic illness?

A collaborative approach between parents, providers, and the child when appropriate (Box 36.1), ensuring choices fit the family’s values and understanding.

How should healthcare providers support developmentally appropriate decision-making?

By tailoring explanations and involvement to the child’s cognitive, emotional, and developmental level.

How should providers approach telling a child about end-of-life issues (“how to say when”)?

Parents choose how the child is informed, with providers addressing the child’s developmental understanding of death (Table 36.4) and respecting cultural and spiritual needs.

What legal or ethical concerns may arise with adolescent autonomy?

Adolescents may seek more control over decisions, raising issues related to consent, assent, confidentiality, and respect for emerging independence.

How does setting influence discussions about prognosis or end-of-life care?

Decisions must consider whether the child is in the hospital, at home, or in hospice, each with different supports, fears, and resources.

What new fears may arise when discussing end-of-life?

Fears related to pain, the unknown, separation, spiritual concerns, or changes in family roles.

What physical signs may indicate impending death?

Physical indicators listed in Box 36.9, which may include changes in breathing, circulation, consciousness, appetite, and energy levels.

What spiritual and cultural considerations must be addressed at the end of a child’s life?

Requirements or rituals specific to the family’s beliefs, cultural practices, and spiritual traditions must be acknowledged and supported.

How do grief and mourning manifest for families of children with chronic illness?

Grief may occur in ongoing waves, intensify at major transitions, and continue through bereavement, influenced by cultural, spiritual, and relational factors.