The Impact of Pediatric Critical Illness and Injury

The Impact of Pediatric Critical Illness and Injury on Families: A Systematic Literature Review 1 Lihinie de Almeida, Susan Ly, Marysia Shudy 08/01/05 National Institutes of Health United States Department of Health and Human Services Bethesda, MD

Rationale Audience: • Patients, families, and health care personnel of the PICU Purpose: • Elucidate: – – – Stressors Needs Social Impact Psychosocial Impact Health impact • Present coping strategies of families with children in the • • PICU Reveal deficiencies within the current research Encourage provision of further interventions

Methods • National competition for summer scholarship selected 3 first-year medical students from all AAMC accredited medical institutions • Literature search using – National Library of Medicine – Library at the National Institutes of Health • Supervision by pediatric intensivist (C. E. N. ) and pediatric pulmonologist (C. L. )

Pub. Med Keywords: – Child – Illness – Impact – Families – Chronic – Critical – Experience – Trauma – Siblings – Effects – Pediatric – Care – Parents – PICU – Teenagers

Exposure to Critical Care Medicine Practice: – Children’s National Medical Center PICU • Bi-weekly Rounds Research: – Naval Medical Research Center Lab • Combat Casualty Care: Resuscitative Medicine • Weekly Lab

Stressors Procedures • Injections • Running IV fluids • Drawing blood • Giving oxygen • Putting tubes in child • Respirator • Bandage changes 7 Sights & Sounds • Constant bright lights • Sudden alarms

Stressors Child’s Appearance • Tubes in child • Bruises, cuts, incisions • Covered eyes • Child restricted to bed • Invasive equipment 9 Child’s Behavior and Emotions • Whining • Demanding behavior • Inactivity • Withdrawal • Unresponsiveness • Loss of bowel or bladder control

Stressors Staff Communication • Explanations too fast • Technical jargon • Talking about matters not relating to child • Too much information • Lack of emotional support or encouragement • Sudden dismissal Staff Behavior • Rushing • Inappropriate joking or laughing • Indifference towards child or parents

Stressors Parental Role Deprivation • Separation from child for extended periods • Incapacity to care for child • Inability to hold child • Restricted visiting hours • Failure to console child

Stress Vulnerability Factors • Higher socioeconomic status • An incomplete family situation – Single-parent households • • • A higher number of preceding life events A lower functional status A longer duration of hospitalization for the child *all resulted in higher PDS scores

Psychological Parent Identified • Know how child is being treated • Feeling of hope • Assurance • Have questions answered honestly • Know what is being done for child • Feel needed by child • Feel hospital personnel care about child • Know prognosis • Receive information daily • Communication Needs

Physical • Personal needs – Food and drink – Sleep and rest – Exercise and activity • • • Visit at any time Have a place to stay near child Talk to doctor daily Help with child’s physical care Cry Allow siblings to be near child

Social • Finances • Transportation • Religious support • School support • Family togetherness • Care for other children

Overview of • prospective • single-sample studies • sample Studies sizes from 7 -189 Impact families • psychological, physical, social impact • Outcome Measures 54 • • • PRISM PSS: PICU FACES-III

Overview • Sample Information: – – – Caucasian Two-parent households families Mothers • Statistics on PICU children: – – Age ranged from 2 days-25 years old 10 =PICU for the first time 8 = unexpected PICU admissions Trauma, cardiovascular, respiratory, and neurological

Psychological Impact • Mothers: – – – – apprehensive panicked guilty factors of illness severity and time after discharge decreased mental health with potential chronicity perceive a worse illness severity befriending hospital staff being close to the child • Fathers: – more likely to use expertise of staff – higher catecholamine levels when child is in the PICU

Psychological Impact • Parents: – higher levels of stress and increased catecholamine levels for parents of younger kids – greater emotional support for parents of children with lifethreatening illnesses • Grandparents: – stressed – concerned

Psychological Impact • Siblings: – – – feelings of depression fear for own health withdrawing from injured child isolation and unimportance resentment or rivalry

Physical Impact Family members experienced physical symptoms as a result of having a child with a critical illness. • Parents/Caregivers: – worsened physical health – feeling numbness – physically sick • Family Unit: – – sleep nutrition increased infections physical fatigue – tired – headaches – anxiety 57

Social Impact • Family functioning and adaptability: – – – pre-injury functioning greater concerns about the child’s future Illness severity • Social support: – family stress – cognitive appraisal • Parents and caregivers’ functioning decreased: – lack of time spent with family – financial costs • No change in family functioning and cohesion

Social Impact • Marital adjustment: – increase in marital conflict – Increase in divorce – no significant difference in marital adjustment

Social Impact • Mothers: – decrease in family cohesion after PICU admission – adaptability related to: • illness severity • location • length of intubation period

Social Impact • Fathers: – family cohesion: • illness severity • length of stay – adaptability: • length of stay – stress: • PICU procedures • financial concerns

Social Impact • Siblings: – poorer self-concept related to the patient’s functional outcome – negative impact on behavior – poorer relationships with peers in school

Coping Behavioral and cognitive efforts utilized to manage internal and external stressors: • emotion-focused: positive reappraisal, selfcontrol, escape-avoidance, acceptance of responsibility, distancing • problem-focused: social support, problem solving, confrontive expression

Factors that Affect Coping • • Age Gender Ethnicity SES Past crisis Environment Support

Familial Coping Two levels of interactions: • how a family internally deals with difficulties between its members • how a family deals externally with problems in the environment Ideally, families cope at both levels.

Coping is enhanced when: • • Near child often Participate in child care Child treated as an individual Accurate information Reassurance Daily updates Social support

Interventions Twenty-five studies aimed to relieve the impact of critical care upon pediatric patients and their families.

Interventions • Meal vouchers • Sleeping • • • accommodations Transportation/parking Laundry facilities Telephones

Interventions • • • Informative letter Home visit Hospital film Web page updated daily Animal-assisted therapy

Interventions • Group sessions • Creating Opportunities for Parent Empowerment (COPE) – Audiotape – Literature – Activities • Nursing Mutual Participation Model of Care (NMPMC) – Open ended questions – Participation – Goals

PICU team 83 81 82 84 85 86

Further Research 87 • • • Long-term outcomes Non-maternal members Non-nuclear families SES implications Demographics Sample size

Limitations • Comprehensive but not exhaustive • 8 week time span for literature search • Different outcome measures among studies

Thank You! 88 89