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. This study examined the experiences of caregivers of recipient's pre- and post-lung transplantation. METHODS/APPROACH: Caregivers of lung transplant recipients were recruited using purposeful sampling. Audiotaped semi-structured open ended interviews were conducted until data saturation. Each interview was transcribed verbatim, and conventional content analysis performed to extract significant themes and subthemes. FINDINGS: Four main themes and 12 sub-themes were identified. The former included (1) establishing the diagnosis, (2) caregiver roles, (3) caregiver psychological and psychosocial issues, and (4) support. Caregivers lacked basic knowledge related to lung transplantation. The caregivers' roles necessitated rearranging priorities, lifestyle changes, and redirecting emotional and physical energy. Support played an important role in caregiving experiences. DISCUSSION: Each caregiver shared their unique caregiving experiences. Caregivers lack knowledge about transplantation, experience dramatic changes in their family life, social activities, employment, and often financial status. Healthcare providers can use the findings of this study in developing informational, and psychological interventions to alleviate caregivers' stress and anxiety.

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. Data were collected from 61 adult parents at 7 and 13 months postinfant/child death using semi-structured interviews about the child's death. Only those parents who responded to questions about usual death practices in their country of origin or cultural group were included in the data analysis. Results: Thirty-two adults from 14 countries reported practices in their country or cultural group after a loved one's death including keeping the front door closed, walking funeral processions with a band playing, the deceased in a car accompanied by family and friends, fireworks, making home altars for deceased spirits with food and water for adults, toys and candy for children and no TV or radio for sometime. Relevance to clinical practice: For community health nurses, understanding these practices is important in being sensitive and appropriate around the death. Asking the family about specific practices they hope to carry out and noting this in the family's record will help alert providers to the family's wishes at this challenging time.

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.

Background: Research on what children wished they had done differently after their sibling's death has not been reported. Objective: 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. Design: 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. Setting/Subjects: Ninety-five school-aged children and 37 adolescents (58% female; 30% Hispanic, 50% black, 20% white). Measurements: Children responded to three open-ended questions: Thinking about your sibling's death, are there things you wish you (1) had done? (2) had not done? (3) What do you do to deal with your sibling's death? Conventional content analysis procedures were used. Results: Children wished they had spent more time, talked and played more with their sibling, saved their sibling, taken care of their sibling more, and been able to see their sibling grow up. They wished they had not been mean/yelled at their sibling, complained/argued with mother about their sibling, and kept their feelings inside. Children coped by talking with family, friends, and the deceased; playing, reading, watching TV; avoiding thoughts about and remembering their sibling; crying, keeping calm, praying; living for their sibling. Resuming their usual activities, trying to be happy, and laughing also helped children cope. Conclusions: Children commented more about what they wish they had done (n = 317) and less about what they wish they had not done (n = 107). Children talked to others and tried resuming usual activities to cope.

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. METHODS: Children and their parents rated the child's health "now," "now compared with others your age," and "now versus before" the sibling's death. SAMPLE: One hundred thirty-two children (58% girls, 72% school-aged, and 50% Black non-Hispanic), 70 mothers, and 26 fathers from 71 bereaved families. CONCLUSIONS: Children self-rated their health: "now" as lower than their mothers at 4, 6, and 13 months and their fathers at 2, 4, and 13 months; "now compared with others your age" as lower than their mothers at each time point and fathers at 4, 6, and 13 months; and "now versus before" their sibling's death as higher than their mothers at 4, 6, and 13 months and fathers at 6 months. Ratings did not differ by age, gender, or race/ethnicity. At 6 months, children self-rated their health "now" as higher than their fathers in families with one to two surviving children but lower than their fathers in families with three to eight surviving children. IMPLICATIONS FOR PRACTICE: Parents often perceive their children as healthier than children perceive themselves after sibling death, especially in larger families. Talking with children separately can identify the children at risk for emotional and physical illnesses earlier, providing more timely and appropriate interventions and referrals.

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. Parents reported demographic information, acute illnesses, health services used, and medication changes 1 to 13 months after the death. Descriptive statistics and 1-way analysis of variance were used to analyze the data. RESULTS: Seventy mothers (age, mean [SD], 35.9 [7.13] years) and 26 fathers (age, 39.0 [7.37] years) participated; 56% of mothers and 42% of fathers had preexisting health problems before the death. Morbidity was greatest in the first 6 months, was relatively quiescent in months 7 through 10, and increased in months 11 through 13. Mothers reported 363 acute illnesses, 16 hospitalizations, and 124 medication changes. Morbidity rates and medication changes for fathers followed similar patterns but with lower frequency. CONCLUSION: After the death of an infant or child, interventions for parents, especially parents with chronic health problems, are best targeted on illness prevention and mental health in months 1 to 6 and 11 to 13 following the 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. Mothers wished they had not agreed to child's surgery/treatment, taken her own actions (self-blame), and left the hospital before the death. Fathers wished they had not been so hard on the child, agreed with doctors/treatment, and taken own actions (self-blame). Religious activities, caring for herself, and talking about/with the deceased child were the most frequent mothers' coping strategies; those of the fathers were caring for self and religious activities. Both mothers and fathers wished they had spent more time with their child and had not agreed to surgery/treatments. The most frequent coping was caring for themselves, likely to care for the family and retain employment. Nurses must be sensitive to parents' need for time with their infant/child before and after death and to receive information on child's treatments at levels and in languages they understand.

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. Analyses included repeated measures-ANOVA, t-tests, and 1-way ANOVA. RESULTS: In total, 132 children and 96 parents participated. More children were female (58%), black (50%), and school-age (72%). Of the children, 43% had elevated anxiety and 6% had elevated depression over 13 months post-sibling death. Child-rated anxiety was higher for girls and black vs white children. Child-rated anxiety and depression were lower if they saw their sibling in the NICU/PICU/ED before and/or after the death, and/or attended the funeral. Teens were more withdrawn than school-age children at all time points. Children who did not see their deceased sibling in the NICU/PICU/ED after death had more requests for parent-teacher conferences. CONCLUSIONS: Children's anxiety was more common than depression, especially in girls and black children. Children who saw their siblings in the NICU/PICU/ED before/after death and/or attended funeral services had lower anxiety and depression over the first 13 months after sibling death.

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. The purpose of this study was to describe children's fears 2-13 months after their sibling's death. Fears were examined by children's age, gender, race/ethnicity, and time. METHODS: Children completed two open-ended questions about fears and five fear items on the Spence Children's Anxiety Scale. The sample consisted of 132 children. RESULTS: Children's top fears across age, gender, and race/ethnicity were daily situations (such as darkness, high places, and violent situations), bugs, animals, and medical examinations. Girls had more total fears than boys. These included fears of bugs and situations with parents and siblings. Boys and Hispanic children had more fears of daily situations. Black children had more fears of animals, whereas White children had more fears of bugs and medical examinations. IMPLICATIONS FOR PRACTICE: Children identify many fears after sibling death, including but not limited to fantasy creatures, common daily situations, bugs, animals, and medical examinations likely related to their sibling's death. Identifying children's fears early can help nurse practitioners assist families in better understanding and responding to children's behavior after sibling death.

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. Eighty-one mothers and 23 fathers completed open-ended questions regarding what they wished they had or had not done and their coping strategies. Mothers wished most to have spent more time with the child (17%), held the child more (11%), and chosen a different treatment path (9%). Fathers wished most to have spent more time with the child (53%) and monitored the child more closely (12%). Mothers wished they had not taken poor care of themselves (27%) and agreed to the child's surgery/treatment (20%). Fathers wished they had not left the hospital (22%) and agreed to surgery/treatment (16%). Mothers most used coping that included caring for herself (23%) and remembering the child (17%), whereas fathers were caring for self (26%) and moving forward (20%). CONCLUSIONS: Parents wished they had spent more time with their child and had not agreed to the child's surgery/treatments. The most frequent coping technique used by parents was caring for themselves. IMPLICATIONS FOR PRACTICE: Practitioners must provide parents time with their infant/child in the NICU/PICU before and after death and provide information on children's treatments at levels and in languages they understand.

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. Research on mothers' and grandmothers' health at about the same time after the same child's death in the neonatal or pediatric intensive care unit is lacking. The aim of this study was to compare mothers and grandmothers on physical health, mental health, and functioning in the first 1-6 months after the same child's death in a neonatal or pediatric intensive care unit. METHODS: This cross-sectional secondary analysis compared 32 mothers with 32 grandmothers of the same 32 deceased children (newborn-6 years). Grandmothers were recruited through these 32 mothers. Most grandmothers and mothers were Hispanic (25%, 34%) or Black (44%, 41%), respectively. Mothers and grandmothers separately completed questions about their Physical Health, Mental Health [depression (Beck Depression Inventory), Post-Traumatic Stress Disorder (PTSD, Impact of Events-R), grief (Hogan Grief Reaction Checklist)], and Functioning (social support [MSPSS] and Employment) since the child's/grandchild's death. Paired t-tests and Chi Square tests were used to compare grandmothers with mothers of the same deceased infant/child on their private and separate responses to study measures. RESULTS: Mothers had significantly more acute illnesses than grandmothers. More mothers (63%) than grandmothers (37%) were categorized as clinically depressed. More mothers (69%) than grandmothers (44%) had clinical PTSD. Mothers reported significantly higher levels of despair and detachment than grandmothers. Only 4 mothers and 2 grandmothers were in therapy at the time of interview. Grandmothers and mothers rated their ability to concentrate on their work and their level of social support similarly. CONCLUSIONS: Mothers had more acute illnesses, more severe depression, and a higher level of grief than grandmothers. However, few received therapy despite their high levels of depressive and PTSD symptoms.

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. Parents (176 mothers, 73 fathers; 44% Hispanic, 35% black non-Hispanic, and 21% white non-Hispanic) of deceased infants/children were recruited from 4 children's hospitals and state death records. Inclusion criteria-parents understood English or Spanish and had a deceased neonate/child ≤ 18. Exclusion criteria -deceased newborn from multiple gestation pregnancy, child in foster care, child's injury due to suspected abuse, or parent death in illness/injury event. Parents reported numbers and types of acute illnesses, hospitalizations, and medication changes 1 to 13 months postdeath. RESULTS: Parents' acute illnesses, hospitalizations, and medication changes were greatest between months 1 and 6, with relative quiescence in months 7 to 10, and an increase in months 11 to 13. Mothers (aged 32 ± 7.8 years) reported 300 acute illnesses (primarily colds/flu, headaches, anxiety/depression, and infections) and 89 hospitalizations (primarily infections, chest pain, and gastrointestinal problems). Fathers (aged 37 ± 8.8 years) reported 104 acute illnesses (colds/flu and headaches) and 9 hospitalizations. CONCLUSION: After infant/child NICU/PICU death, mothers had greater morbidity than fathers, with no significant differences by race/ethnicity. Parents' health needs to be monitored in months 1 to 6 and months 11 to 13, and interventions targeted to parents in these months.

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. The 132 children (76 girls, 56 boys, M 10.6 years, SD 3.43); 30% Hispanic, 51% Black, 26% White were recruited via hospital ICUs and published obituaries. Using a longitudinal design, parents reported types and numbers of surviving siblings' illnesses, treatments/health services, and dates post-sibling death. Most of the 207 illnesses and 674 treatments/health services occurred in the first 6 months post-sibling death. While girls had more illnesses (131) than boys (76) and Hispanic children had more illnesses than White or Black children, these differences were not statistically significant. Girls accounted for 66% of the treatments/health services and boys 34%. There was no significant difference in treatments/health service use by gender of the children (F = 1.00, p = .32). Hispanic children had significantly more treatments/health service use than Black children (F = 6.81, p = .002). Sibling death affects surviving siblings' physical health. Study data document the importance of monitoring the health, treatments and health service use of surviving siblings especially in the first 6 months after a sibling death, regardless of the child' s gender. On average, Hispanic children had greater health service use, which may warrant greater attention.

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. Thirty one children (58% female), recruited from four South Florida hospitals and Florida obituaries, participated. Children's mean age was 8.4 years; 64.5% were Black, 22.5% Hispanic, 13% White. Interviews were analyzed using conventional content analysis. Resulting themes: circumstances of the death, burial events, thinking about and talking to the deceased sibling, fears, and life changes. Most children knew their sibling's cause of death, attended funeral/memorials, thought about and talked to their deceased sibling, reported changes in family and themselves over the 13 months. Fears (something happening to themselves, parents, other siblings-death, cancer, being snatched away) decreased from 7 to 13 months especially in 7-year to 9-year-olds. Seven-year to 9-year-olds reported the greatest change in themselves from 7 to 13 months. More Black children and girls thought about the deceased and reported more changes in themselves over the 13 months. School aged children thought about and talked with their deceased sibling, reported changes in themselves and their family and their fears decreased over the first 13 months after their sibling's death.

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. Themes included death circumstances, burial events, thinking about the deceased sibling, fears, and life changes. Adolescents reported shock and disbelief that the sibling died; 80% knew the reason for the death; many had difficulty getting through burials; all thought about the sibling. From 7 - 13 months fears increased including losing someone and thoughts of dying. Adolescents reported more changes in family life and greater life changes in them (more considerate, mature) by 13 months; some felt friends abandoned them after the sibling's death. Girls had more fears and changes in family life and themselves. Adolescent's responses to sibling death may not be visually apparent. One recommendation from this study is to ask adolescents how they are doing separately from parents since adolescents may hide feelings to protect their parents, especially their mothers. Older adolescents (14-18 years) and girls may have more difficulty after sibling 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. METHODS: The sample consisted of 165 bereaved parents, 78% minority. The Spiritual Coping Strategies Scale was used to measure religious and spiritual coping practices, separately. One-way ANOVAs indicated that Black non-Hispanic mothers used significantly more religious coping practices at 3 months than White non-Hispanic mothers. Protestant and Catholic parents used more religious coping practices than the "no" and "other" religion groups at 1 and 3 months. Within the 30 mother-father dyads (paired t-tests), mothers reported significantly greater use of religious coping practices at 1 and 3 months and spiritual coping practices at 3 months than fathers. CONCLUSION: Religious coping practices were most commonly used by Black mothers and Protestant and Catholic parents. Within dyads, mothers used more spiritual and religious coping practices than fathers. IMPLICATIONS FOR PRACTICE: These findings are beneficial for healthcare personnel in providing support to bereaved parents of diverse races/ethnicities and religions.

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 (n = 130) and fathers (n = 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. Grief was more intense for: mothers of deceased adolescents and mothers whose child was declared brain dead. CONCLUSION: Mothers' and fathers' grief intensity may not coincide, resulting in different needs during the 13 months after infant/child 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. Children completed the Child Depression Inventory and Spence Children's Anxiety Scale. Sibling cause of death was collected from hospital records. RESULTS: At 2 and 4 months, 45% to 54% of mothers' and 53% to 84% of fathers' ratings of their child's health "now" were higher than their children's ratings. Child health ratings were lower for: children with greater depression; fathers whose children reported greater anxiety; mothers whose child died of a chronic condition. Children's ratings of their health "now vs before" their sibling's death did not differ significantly from mothers' or fathers' ratings at 2 or 4 months. Black fathers were more likely to rate the child's health better "now vs before" the death; there were no significant differences by child gender and cause of death in child's health "now vs before" the death. CONCLUSIONS: Children's responses to a sibling's death may not be visually apparent or become known by asking parents. Parents often perceive their children as healthier than children perceive themselves at 2 and 4 months after sibling death, so talking with children separately is important. Children's perceptions of their health may be influenced by depression, fathers' perceptions by children's anxiety, and mother's perceptions by the cause of sibling death.

Low-Income First-Time Mothers: Effects of APN Follow-up Using Mobile Technology on Maternal and Infant Outcomes.

Background. Low-income mothers have greater challenges in accessing health care services due changes in the health care system and budget cuts. The purpose of this randomized clinical trial was to test a nurse practitioner (NP) intervention using cell phone and texting on maternal/infant outcomes. Methods. The sample included 129 mother-infant pairs. Intervention group mothers received NP 2-way cell phone follow-up intervention post-hospital discharge for 6 months. Results. Intervention mothers' perceived social support was significantly higher. Intervention infants received their first newborn follow-up visit significantly earlier (6 vs 9 days); significantly more infants were immunized at recommended times (2, 4, and 6 months of age); and there were fewer infant morbidities compared to controls. The intervention saved between $51 030 and $104 277 in health care costs averted. Conclusion. This easy-to-use, safe intervention is an effective way to reach a wide range of populations and demonstrated improved maternal/infant outcomes and decreased cost.

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. METHODS: Mothers' postpartum concerns were compared in two clinical trials: 1997 (high-risk pregnancy) and 2015 (first-time mothers). Advanced practice nurses (APNs) provided care through 8 weeks postpartum and recorded interactions in clinical logs. Content analysis of logs was used for identifying concerns. RESULTS: Ninety-five percent of 58 1997 mothers were African American; 64% of 62 2015 mothers were Hispanic. The number of infant concerns (129 vs. 144) was similar to four of the top five infant concerns; infant feeding was the top concern for both groups. The 1997 mothers were concerned with body changes, birth control, breastfeeding, maternal health problems, and had more concerns about their health (142 vs. 43); the 2015 mothers were concerned with not having help, fatigue, finding things hard. Both groups had postpartum pain concerns and problems accessing mother/infant governmental programs. CONCLUSIONS: Mothers' concerns regarding infant care were essentially the same over the two time periods with infant feeding as the top concern. Maternal concerns in common were postpartum pain and needing help accessing government programs. Women who had high-risk pregnancies had more health concerns. IMPLICATIONS FOR PRACTICE: Results provide guidance for helping minority mothers in the postpartum period.

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. METHODS: A descriptive, correlational design was used with a structured interview of parents 1 month after the death and review of hospital chart data. Parents whose children died in intensive care were recruited from 4 South Florida hospitals and from Florida Department of Health death records. RESULTS: Among 230 parents, 54% of mothers and 40% of fathers agreed with the chart cause of death. Agreement did not differ significantly for mothers or fathers by race/ethnicity, participation in end-of-life decisions, discussions with physicians, or mean length of hospital stay. Agreement was better for mothers when the stay in the intensive care unit was the shortest. Fathers' agreement with chart data was best when the deceased was an infant and death was in the pediatric intensive care unit. CONCLUSIONS: Death of a child is a time of high stress when parents' concentration, hearing, and information processing are diminished. Many parents have misconceptions about the cause of the death 1 month after the death.