Caring for Children with Chronic Conditions

1. Chapter 35 Caring for the Child with a Chronic Condition or the Dying Child

2. A Chronic Condition • Persists over 3 months or recovery progresses slowly • A physical, psychosocial, or cognitive impairment that places limitations on the child • May require that the child and family rely on assistance (adaptive devices) • Can be a congenital defect; occur during fetal development; occur at birth; be a genetic predisposition; be acquired through illness, accident, or injury; and may lead to a child’s death

3. Examples of Chronic Conditions • Brain—cerebral palsy or a seizure disorder • Heart—congenital or acquired heart disease • Lungs—cystic fibrosis, bronchopulmonary dysplasia (BPD), or asthma • Muscular or skeletal—muscular dystrophy or skeletal malformations • Abdominal organs—kidneys (renal failure), liver (cirrhosis), or intestine (short bowel syndrome) • Skin—eczema, dermatitis, or conditions such as Lyme disease that can cause chronic arthritis • Psychological—depression, bipolar disorder, or autism • Cognitive—Down syndrome, developmental or learning disabilities

4. A Chronic Condition and Its Relationship to Technology • Technology  dependent means the child is reliant on some type of medical device to compensate for the loss of normal use of a vital body function. • The Technology Related Assistance for Individuals with Disabilities Act Amendments of 1994 provide for programs that support the development, acquisition, or application of assistive technology devices or equipment to assist the child living with limitations. • The child may also require substantial skilled nursing care to avert death and further disability.

5. Impact of a Chronic Condition • Creates a threat of the unknown, loss of control, and have long-term effects • Causes frequent hospitalizations or clinic visits to be needed • Disrupts normal home routines • Places more demand on the caregiver • May cause parents to become controlling and overprotective • Causes child to have to cope with unfamiliar people, places, and medical treatments • May cause family to be overwhelmed and experience social, financial, and psychological strain

6. Impact of the Chronic Condition on the Infant • Impact • Alters bonding process • May have pain • Changes in diet and sleep may alter growth and development • Nursing care • Rock, hold, comfort, and use a soothing voice • Provide visual and auditory stimulation • Group nursing care measures and protect nap time • Maintain the crib as a safe place • Encourage parents to hold the infant • Encourage siblings to visit

7. Impact of the Chronic Condition on the Toddler • Impact • Unable to accomplish autonomy • Pain, anxiety, and separation from parents • Sensitive to bodily harm • Hindered gross and fine motor development • Stress and regression present • Nursing care • Maintain bond between parents and child • Promote realistic developmental skills • Do not react negatively to regression • Praise child for attempts at self-care • Instruct parents on realistic methods of discipline • Manage pain • Maintain home routine as much as possible • Allow child to express feelings through play

8. Impact of the Chronic Condition on the Preschooler • Impact • Feels he or she is punished for wrongdoing • Reacts aggressively • Regresses • Withdraws from others • May have difficulty sleeping (fear going to sleep) • Nursing care • Provide with the opportunity to express fears and frustrations • Tell stories and read books • Allow the preschooler to use dramatic play • Ask the child-life specialist for assistance • Maintain a normal home schedule as much as possible and enforce consistent limits • Reassure child that nothing he or she did caused the illness • Be honest when explaining and preparing the child for procedures • Understand limited concept of time

9. Impact of the Chronic Condition on the School-Age Child • Impact • Alters autonomy and peer relationships • Interrupts independence • Refuses to comply with treatments or comply with a special diet • Cannot completely comprehend all information (reluctant to answer questions) • May understand significance of illness and lifelong consequences • Nursing care • Assess pain • Reassure that personal behavior has not caused illness • Answer questions at a level the child can understand • Use play as an outlet (unstructured) • Include peers as much as possible • Communicate to family about nonverbal cues • Maintain open and honest dialogue

10. Impact of the Chronic Condition on the Adolescent • Impact • Where to place the adolescent—pediatric ward or adult floor? • Dependence on caregivers • Lack of privacy • Maladaptive coping behaviors • Refuses treatments • Easily overwhelmed and may show regression • Worries about condition, self-esteem, identity, and family • Nursing care • Provide solitary time • Give realistic choices • Include adolescent in medical-related matters when possible • Use peer support and interaction • May expand networks to include support groups and community programming

11. Impact of the Chronic Condition on the Sibling • Impact • Decreases self-esteem • Receives less support from parents • May have mood swings, lack understanding about the condition • May display a negative attitude toward the ill sibling • Feelings of jealousy, embarrassment, resentment, loneliness, and isolation • Thinks that they caused the condition or might acquire the condition too • Nursing care • Instruct parents to maintain familiar home routines as much as possible • Include the sibling in simple care • Provide information about the ill child

12. Collaboration in Caring • Child-life specialist • An expert in child development and therapeutic play • Called upon to work with a child who has been diagnosed with a chronic condition

13. The Child Living with aChronic Condition • Children living with a chronic condition experience one or more of these symptoms • Limitation in bodily functions appropriate for age and development • Disfigurement • Dependence on medical technology • Dependence on medication or special diet to ensure normal functioning or control of the condition • Ongoing need for medical care or related services • Special ongoing treatments at home or at school • Caregiver burden • Daily health care regimes and complex schedule • Limited time for self and marriage • Psychological distress • Financial burden • Nursing care • Discuss feeling with health care professional • Suggest respite care

14. Emotional Responses to a Chronic Condition • Responses • Family equilibrium is disrupted • Feelings of shock, chaos, anger, fear, disbelief, anxiety, pain, and stress (“emotional roller coaster”) • Nursing care • Communicate • Sustain normal daily activity and incorporate treatment into a new daily routine • Discuss important information (treatment, procedures, medicine, or visits to the hospital or clinic) • Listen to parents • Encourage spending quality time with the ill child • Teach parents about chronic sorrow • Give parents information about community resources

15. Important Aspects when Caring for a Child with a Chronic Condition

16. Establishing a Therapeutic Relationship • It is important to establish a therapeutic relationship • Nursing care • Care may be technical as well as emotional • Establish trust (see Critical Nursing Action: Establishing Trust with the Family)

17. Growth and Development • Growth failure means that the child grows more slowly and their height and weight are in a lower percentile on growth charts than for children of the same age • Pathophysiology of the condition may affect the child’s growth • Treatment protocols associated with chemotherapeutic agents may hinder growth • May see delayed development as well • Nursing care • Plot growth on charts for the National Center for Health Statistics • Ensure adequate nutrition • Encourage parents to maintain realistic developmental milestones • Help the child interact with children of the same age • Create a social network

18. Education • All children, including those with a chronic condition, are entitled to education that is matched to the developmental and functional capabilities of the child • School personnel must be informed about any conditions • Teachers receive special training • Resource allocation is needed to support the child • Nursing care • Discuss home schooling • Observe federal laws providing educational services for children

19. Cultural Issues • Understanding ethnocultural aspects of the child who has a chronic condition is paramount • Ethnocultural considerations emphasize cultural sensitivity in both the hospital and community settings • Nursing care • Assess the language and nonverbal cues being used by the child & family • Determine the locus of control and where the decision making process lies • Consider the relevance of religious beliefs and spiritual practices • Evaluate expressions of pain • Assess hope • Assess grief and reaction to death

20. The Dying Child

21. Perceptions of Death • Infant • Based on the degree of discomfort and the reactions of the parent and others in the environment • Toddler • Separation from parents or disruption in routine • Preschooler • Magical thinker—illness or injury may be viewed as punishment for bad behaviors • Concrete thinker—death should not be described as “going to sleep” • School-age • Understanding not precise until child can understand the concept of time • After age 8 or 9, children understand the permanence of death • Adolescent • Adult level understanding and fear of dependence • Difficulty accepting death as reality and often think that death can be defied

22. Before the Child Dies • Complete the institution’s checklist to ensure policies and procedures are followed • Contact the bereavement team • Create a file and include community resources • Make a follow-up ledger and phone call

23. Recognition of Physical Signs of Impending Death • Loss of sensation • Loss of ability of body to maintain thermoregulation: skin may feel cool • Loss of bowel and bladder function • Loss of awareness, consciousness, and slurring of speech • Alteration in respiratory status • Cheyne–Stokes respirations (a waxing and waning of respiration in the depth of breathing with regular periods of apnea) • Noisy chest or respirations with the accumulation of fluid in the lungs or in the posterior pharynx • Decreased, weak, or slow pulse rate and drop in blood pressure

24. Nursing Care • Shift from the curative technological approach to providing care that enables the child to move toward death, accessing own inner resources for healing • Help the child restore mental, physical, and spiritual balance to attain peace at the time of death • Be present • Use touch • Give family choices • Assess the situation and determine the proper environment

25. Care of the Dying Child • Care of the dying child includes holistic nursing interventions that address the physical, emotional, and spiritual aspects • Palliative care—follows a medical model • Hospice care—holistic approach; focuses on quality of life • End-of-life care—end of life is about 6 months away; peaceful death without pain

26. Holistic Care for the Dying Child • Comfort measures • Emotional support • Spiritual interventions • Complementary care • See Critical Nursing Action, Holistic Care for the Dying Child and Clinical Alert, Principles of Pain Medication Administration

27. After the Child Dies • Prepare the family about the child’s appearance and description of the death • Give family the choice of being with the child alone or with the nurse • Handle the child’s belongings gently and with respect

28. Grieving

29. Somatic Grief Response • Somatic grief response can be described as • Somatic distress that includes feelings of tightness in the throat or chest, sighing • Weakness or shortness of breath • Preoccupation with the image of the deceased (e.g., hearing or seeing the person who died) • Inability to focus on anything other than the loved one who died • Emotionally distancing self from others • Feelings of guilt • Feeling responsible for the loved one’s death • Searching for what could have been done differently, thinking in terms of “if only had done . . .” • Hostile reactions that include feelings and expressions of anger • Inability  to complete daily tasks

30. Grief Theories • Kübler-Ross stages of grief • Denial and isolation (numbness and disbelief) • Anger (awareness about the reality) • Bargaining (with self or God) • Depression (profound sadness) • Acceptance (look for meaning)

31. Grief Theories • Miles and Perry stages of grief • Phase 1—state of numbness and shock • Phase 2—period of intense grief • Phase 3—period of reorganization

32. Grief Theories • Epperson theory of grieving • Grief associated with sudden death or catastrophic loss • High anxiety—emotional upheaval • Denial—protective emotional reaction • Anger—usually diffuse type of anger (lashes out) • Remorse—feelings of guilt and sorrow • Grief—period of overwhelming sadness • Reconciliation—end-point to the family crisis (moving on)

33. Coping Patterns • Grief reactions can differ • Recognize exhibited coping patterns and find ways to support family • Listen, sit silently, refer to pastoral care, offer spiritual care • If destructive behavior to self or others, call physician or professional counselor • Do not alter coping pattern completely • Pathological grief • Subtle indicators • Suicidal or homicidal ideation • Violent behavior • Grief influenced by drugs and alcohol • Extreme denial

34. Saying Good-Bye • Saying good-bye should not be rushed • Call the child by his or her name • What to say • “I’m sorry” • “This must be terribly hard for you” • “Is there anyone I can call for you?” • “Would you like me to stay with you for a while?”

35. Sibling Says Good-Bye • Visits from the sibling are important • Include sibling in grieving process • Give them the opportunity to say good-bye

36. Related Aspects • Remembrance packet • Organ tissue donation • Funerals

37. Caring for the Professional Caregiver • Feelings of helplessness about not being able to alter the outcome • Burnout (state of physical, emotional, and mental exhaustion) • Compassion fatigue syndrome (helplessness, confusion, and isolation) • Moral distress (acting in a manner contrary to personal or profession values) • Pay attention to personal needs