The Lived Experiences of Caregivers of Lung Transplant Recipients.

Introduction: Lung transplantation is a treatment crucial for the survival of patients with end-stage lung diseases. An identified caregiver is obligatory for a patient to be eligible for a lung transplant and plays an essential role in the transplant recipient's care. Most caregiver research, however, has been on caregivers of persons with Alzheimer's disease or the elderly, with limited research on caregivers' experiences caring for transplant recipients.

Practices following the death of a loved one reported by adults from 14 countries or cultural/ethnic group.

Aims: The purpose of this study was to examine the reported ritual practices (dealing with the deceased's remains, wake, funeral, burial and celebration) of White non-Hispanic, Black non-Hispanic and Hispanic/Latino adults in their country of origin or ethnic or cultural group in the United States following the death of a loved one.

Design: This descriptive study is a secondary analysis from a longitudinal mixed-methods study that examined parents' health and functioning following the death of a child.

Methods: Adult parents whose child died in neonatal intensive care units or paediatric intensive care units were recruited from four hospitals and from death records.

What Children Wished They Had/Had Not Done and Their Coping in the First Thirteen Months after Their Sibling's Neonatal/Pediatric Intensive Care Unit/Emergency Department Death.

Research on what children wished they had done differently after their sibling's death has not been reported. Examine what children wished they had/had not done, and their coping after a sibling's neonatal/pediatric intensive care unit/emergency department (NICU/PICU/ED) death. Qualitative data are part of a longitudinal mixed methods study of 6- to 18-year-olds interviewed at 2, 4, 6, and 13 months after a sibling's death.

Parent and child perceptions of the child's health at 2, 4, 6, and 13 months after sibling intensive care or emergency department death.

Background: Approximately 50,000 US infants and children die annually, leaving surviving children and families with long-lasting effects. In most studies, children's health is rated by parents, but not the children.

Purpose: To compare the surviving children's self-rated health with parents' ratings at 2, 4, 6, and 13 months after sibling neonatal intensive care unit/pediatric intensive care unit/emergency department death death and identify the related factors.

Acute Illnesses, Use of Health Services, and Changes in Medication Among Parents After Infant or Child Death.

Background: The death of an infant or child has been described as the most stressful life event, but few reports exist on the effects on parents' physical health in the year after the death.

Objective: To examine acute illnesses, use of health services, and medication changes among parents from 3 racial/ethnic groups 1 to 13 months after the death of an infant or child in the neonatal intensive care unit or pediatric intensive care unit.

Methods: In a longitudinal study, 96 parents (41% black, 32% Hispanic, 27% white) of deceased infants or children were recruited from 4 children's hospitals and death records.

Black, White, and Hispanic Children's Health and Function 2-13 Months After Sibling Intensive Care Unit Death.

Objective: To describe children's anxiety, depression, behaviors, and school performance at 2-13 months after sibling neonatal/pediatric intensive care unit (NICU/PICU) or emergency department (ED) death and compare these outcomes by child age, sex, race/ethnicity, whether the child saw their sibling in the NICU/PICU/ED, and attended the sibling's funeral.

Study Design: Children in 71 families were recruited for this longitudinal study from 4 children's hospitals and 14 other Florida hospitals. Children rated anxiety (Spence Children's Anxiety Scale) and depression (Children's Depression Inventory); parents rated child behaviors (Child Behavior Checklist) and reported school performance (detentions, suspensions, requested parent-teacher meetings) at 2, 4, 6, and 13 months post-sibling death.

Parents' Wishes for What They Had or Had Not Done and Their Coping After Their Infant's or Child's Neonatal Intensive Care Unit/Pediatric Intensive Care Unit/Emergency Department Death.

This qualitative study asked 70 mothers and 26 fathers 3 open-ended questions on what they wish they had and had not done and on coping 2, 4, 6, and 13 months after their infant's/child's neonatal intensive care unit/pediatric intensive care unit/emergency department death. Mothers wished they spent more time with the child, chosen different treatments, advocated for care changes, and allowed the child his or her wishes. Fathers wished they had spent more time with the child and gotten care earlier.

Parents: Wish I had done, wish I had not done, and coping after child NICU/PICU death.

Background And Purpose: An infant or child death is devastating for parents. This study examined parents' wishes regarding what they had or had not done and how they coped 1-13 months and 2-6 years after the infant's/child's neonatal intensive care unit (NICU)/pediatric intensive care unit (PICU) death.

Methods: Qualitative study design using conventional content analysis.

Children's fears 2-13 months after sibling NICU/PICU/emergency department death.

Background And Purpose: Sibling loss can heighten children's fears. Approximately two million children in the United States experience the death of a sibling each year, leaving 25% of them in need of clinical intervention and more than 50% with significant behavioral problems. Fear, guilt, anxiety, and even distance from parents are some of the reactions that children feel after experiencing the loss of a sibling.

Surviving Siblings' Illnesses, Treatments/Health Services over 13 Months after a Sibling's Death.

Two million children experience sibling death annually and have problems that require clinical intervention although few receive such help. Effects on surviving siblings' mental health has been well documented, however their physical health has not. This study described surviving siblings' illnesses, treatments/health services at 2, 4, 6, and 13 months post-sibling death.

Comparison of mothers and grandmothers physical and mental health and functioning within 6 months after child NICU/PICU death.

Background: Losing a child is devastating for parents and grandparents. Family and friends generally focus on comforting and supporting the bereaved parents, unintentionally ignoring the bereaved grandparents. Grandmothers and grandfathers often struggle with wanting to help their adult children (deceased child's parents) without usurping the parents' responsibilities and decisions regarding the deceased child.

Adolescents' Experiences 7 and 13 Months Following the Death of a Brother or Sister.

This qualitative study used semi-structured interviews to describe adolescents' responses at 7 and 13 months to siblings' NICU/PICU/ED death. At 7 months, adolescents were asked about events around the sibling's death; at 7 and 13 months, about concerns/fears, feelings, and life changes. Seventeen adolescents participated (13-18 years; M=15); 65% Black, 24% Hispanic, 11% White.

School Aged Children's Experiences 7 and 13 Months Following a Sibling's Death.

This study described 6-year to 12-year-old children's responses 7 and 13 months after siblings' NICU/PICU/ED death. Using semi-structured interviews, at 7 months, children were asked about events around their sibling's death. At both 7 and 13 months, children were asked about their thoughts and feelings about the deceased, concerns or fears, and life changes since the death.

Use of spiritual coping strategies by gender, race/ethnicity, and religion at 1 and 3 months after infant's/child's intensive care unit death.

Background And Purpose: In the United States, 57,000 children (newborn to 18 years) die annually. Bereaved parents may rely on religious or spiritual beliefs in their grief. The study's purpose was to examine differences in parents' use of spiritual and religious coping practices by gender, race/ethnicity, and religion at 1 and 3 months after infant/ICU death.

Parent Grief 1-13 Months After Death in Neonatal and Pediatric Intensive Care Units.

Objective: Describe changes in mothers' and fathers' grief from 1 to 13 months after infant/child neonatal/pediatric intensive care unit death and identify factors related to their grief.

Methods: Mothers ( = 130) and fathers ( = 52) of 140 children (newborn-18 years) completed the Hogan Grief Reaction Checklist at 1, 3, 6, and 13 months post-death.

Results: Grief decreased from 3 to 13 months for mothers and from 3 to 6 months for fathers.

Parents' Acute Illnesses, Hospitalizations, and Medication Changes During the Difficult First Year After Infant or Child NICU/PICU Death.

Background And Objectives: Infant/child death is described as a most stressful life event; however, there are few reports of effects on parent physical health during the first year after the death. The study's purpose is to examine the patterns of parent acute illnesses, hospitalizations, and medication changes over 1 to 13 months after neonatal intensive care unit (NICU) or pediatric intensive care unit (PICU) infant/child death in 3 racial/ethnic groups.

Methods: Secondary analyses were conducted with longitudinal data on parent health and functioning 1 to 13 months after infant/child NICU/PICU death.

Parent & Child Perceptions of Child Health after Sibling Death.

Background: Understanding children's health after a sibling's death and what factors may affect it is important for treatment and clinical care. This study compared children's and their parents' perceptions of children's health and identified relationships of children's age, gender, race/ethnicity, anxiety, and depression and sibling's cause of death to these perceptions at 2 and 4 months after sibling death.

Methods: 64 children and 48 parents rated the child's health "now" and "now vs before" the sibling's death in an ICU or ER or at home shortly after withdrawal of life-prolonging technology.

Comparing mothers' postpartum concerns in two clinical trials 18 years apart.

Background And Purpose: To determine if U.S. women's postpartum concerns have changed over time.

Cause of Death of Infants and Children in the Intensive Care Unit: Parents' Recall vs Chart Review.

Background: More than 55 000 children die annually in the United States, most in neonatal and pediatric intensive care units. Because of the stress and emotional turmoil of the deaths, the children's parents have difficulty comprehending information.

Objectives: To compare parents' reports and hospital chart data on cause of death and examine agreement on cause of death according to parents' sex, race, participation in end-of-life decisions, and discussion with physicians; deceased child's age; unit of care (neonatal or pediatric); and hospital and intensive care unit lengths of stay.

Death Rituals Reported by White, Black, and Hispanic Parents Following the ICU Death of an Infant or Child.

Unlabelled: To examine rituals (disposing remains, wakes, funerals/burials, celebrations) of White, Black, Hispanic parents post ICU infant/child death.

Design And Methods: Qualitative design, 63 parents completed English or Spanish semi-structured interviews at 7 & 13months after infant's/child's death. Interviews were audio-recorded, transcribed verbatim, and entered into Atlas.

Parent Spirituality, Grief, and Mental Health at 1 and 3 Months After Their Infant's/Child's Death in an Intensive Care Unit.

Unlabelled: The death of an infant/child is one of the most devastating experiences for parents and immediately throws them into crisis. Research on the use of spiritual/religious coping strategies is limited, especially with Black and Hispanic parents after a neonatal (NICU) or pediatric intensive care unit (PICU) death.

Purpose: The purpose of this longitudinal study was to test the relationships between spiritual/religious coping strategies and grief, mental health (depression and post-traumatic stress disorder) and personal growth for mothers and fathers at 1 (T1) and 3 (T2) months after the infant's/child's death in the NICU/PICU, with and without control for race/ethnicity and religion.

Psychometric Properties of Newly Translated Spanish Life Events Inventory and Daily Hassles Scale.

Background And Purpose: Measuring stress in Hispanic Americans, the fastest growing U.S. minority, is problematic.

Health and Functioning in Grandparents After a Young Grandchild's Death.

This cross-sectional study examined the physical and mental health, grief and role functioning of 136 grandparents in the first year after death of their young grandchild (newborn through 6 years). Grandparents were 36-77 years old; 73% female; 24% Hispanic, 38% Black/African American, and 38% White. Mean age of the 115 deceased grandchildren was 12.

Infant and child deaths: Parent concerns about subsequent pregnancies.

Purpose: Examine parents' concerns about subsequent pregnancies after experiencing an infant or child death (newborn to 18 years).

Data Sources: Thirty-nine semistructured parent (white, black, Hispanic) interviews 7 and 13 months post infant/child death conducted in English and/or Spanish, audio-recorded, transcribed, and content analyzed. Mothers' mean age was 31.