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Parent’s Perceptions of Health Care Providers Actions Around Child ICU Death
Abstract and Figures
Purpose:
To describe parents' perspectives of health care provider actions that helped or did not around the time of infant/child's intensive care unit (ICU) death. Semistructured interviews with 63 parents (Black, White, and Hispanic) 7 months post infant/child death were audio-recorded, transcribed, analyzed, and themes identified.
Findings:
What helped most: compassionate, sensitive staff; understandable explanations of infant's/child's condition; experienced, competent nurses; providers did everything to help infant/child; and parents' involvement in care decisions. What did not help: insensitive, nonsupportive staff; conflict between providers and parents; communication problems around the death; inexperienced nurses and doctors; parents not understanding child's disease, care, complications.
Conclusions:
Compassionate, sensitive staff and understandable explanations of children's conditions were most helpful; insensitive, nonsupportive staff least helpful by gender, racial group, or care setting. Conflict between providers and parents was most problematic for minority parents and mothers.
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... Nordiske studier om pårørendeerfaringer fra barneintensivavdeling, der barnet overlevde, finner at pårørende opplevde det vanskelig å definere egne roller, som igjen medvirket til følelse av utilstrekkelighet og maktesløshet (12)(13)(14). Videre indikerer forskning fra et generelt pårørendeperspektiv at sykepleiernes håndtering er avgjørende for pårørendes opplevelse av intensivoppholdet (10,(12)(13)(14)(15)(16). ...
... Selv om informantene understreker at hele behandlingsteamet har fokus på å redde liv når et barn innlegges, beskrives også et samtidig fokus på at pårørende selv må se og erfare at innsatsen er optimalisert, og at behandlingsteamet gjør det som er mulig for at barnet skal reddes. Dette samsvarer både med overordnede anbefalinger for barnepalliasjon (19) og med studier fra et pårørendeperspektiv, som finner at pårørende opplevde det som en trygghet at behandlingsteamet gjorde sitt beste for å redde barnet (8,16), og at gjenvaerende behandlingsalternativ ble forklart dersom livet ikke kunne reddes (16). ...
... Selv om informantene understreker at hele behandlingsteamet har fokus på å redde liv når et barn innlegges, beskrives også et samtidig fokus på at pårørende selv må se og erfare at innsatsen er optimalisert, og at behandlingsteamet gjør det som er mulig for at barnet skal reddes. Dette samsvarer både med overordnede anbefalinger for barnepalliasjon (19) og med studier fra et pårørendeperspektiv, som finner at pårørende opplevde det som en trygghet at behandlingsteamet gjorde sitt beste for å redde barnet (8,16), og at gjenvaerende behandlingsalternativ ble forklart dersom livet ikke kunne reddes (16). ...
Introduksjon: Internasjonalt er traume en av hovedårsakene til dødsfall hos barn, men i Norge er antall barn innlagt på grunn av traume betydelig redusert de siste tiårene. Per i dag er svært lite forskningsbasert kunnskap tilgjengelig relatert til situasjoner der barn dør i barneintensivavdeling som følge av et traume. Forskning som omhandler pårørende til barn innlagt i sykehus generelt, viser at pårørende har behov for profesjonalitet i møte med helsevesenet, samtidig som personlig omsorg og ivaretagelse fra sykepleiere har stor betydning. Hensikt: Undersøke hvordan sykepleiere ivaretar pårørende når barnet dør i en barneintensivavdeling som følge av et traume. Metode: Studien er av kvalitativt design. Det er gjennomført tre fokusgruppeintervju med totalt 14 deltagere. Intervjuene er analysert ved bruk av systematisk tekstkondensering. Resultater: Resultatene omfatter tre hovedtema med tilhørende subgrupper. Det prosessuelle tidsperspektivet tar for seg hvordan sykepleierne arbeider med pårørende for å hjelpe dem gjennom prosessen. Kommunikasjon i kriser handler om hvordan kommunisere med pårørende som befinner seg i en unntakstilstand, mens teamarbeid inkluderer pasientnær samhandling mellom sykepleiere og tverrfaglig mellom ulike behandlere, samt oppfølging fra kommunen. Konklusjon: Studien underbygger viktigheten av at sykepleiere aktivt må inkludere pårørende fra barnets innleggelse til avslutning av behandling, slik at pårørende ser at alt blir gjort for å redde barnet. Kommunikasjon og et bevisst forhold til bruk av tid er essensielt for å fremme forståelse hos pårørende og gi dem muligheten til å forsone seg med situasjonen. ENGLISH ABSTRACT Caring for relatives when children die due to trauma: a qualitative study from a nursing perspective Introduction: On an international level trauma is one of the main causes of mortality and morbidity among children. In Norway, however, the number of children admitted due to trauma has been significantly reduced in recent decades. There is minimal research- based knowledge related to situations where children die from trauma in a pediatric intensive care unit. Research on the care for relatives to hospitalized children show that professionalism within the healthcare system is very important to the relatives. In addition to this, care and attention from nurses is also of great importance. Purpose: The purpose of this study is to investigate how nurses work when it comes to caring for relatives when a child dies in the pediatric intensive care unit due to trauma. Methods: The study has a qualitative design. Three focus group interviews were conducted with a total of 14 participants. The interviews were analyzed using systematic text condensation. Results: The results included three main themes with associated subgroups. The procedural time perspective addresses how nurses work with relatives to help them through the process. Communication in crises consists of communication with relatives who are in a state of emergency, while teamwork includes patient-centered interaction between nurse colleagues, an interdisciplinary team, as well as follow-up from the municipality. Conclusion: The study findings support the importance of nurses actively including relatives from the child’s hospitalization to the end of treatment. This gives relatives reassurance that the treatment team is doing everything they can to save the child. To promote understanding among relatives and give them the opportunity to reconcile the situation, a conscious choice regarding use of time and communication is essential. The treatment team must focus on the future in addition to the situation here and now. This will help them facilitate the mourning process, within the structures of a pediatric intensive care ward as well as through the health service in general.
... Psychological research has shown several prosocial outcomes when individuals feel compassion for others including volunteering to help others. Previous studies examining compassion in pediatric populations have focused on pediatric oncology healthcare settings, recognizing compassion as a component of the overall healthcare experience and providing effective clinical communication and shared decisionmaking (Rider and Perrin, 2002;Kuo et al., 2012;Brooten et al., 2013;Orioles et al., 2013;. The insights gleaned from pediatric oncology could be transferrable to other populations. ...
Introduction
To examine the scope of existing literature on the conceptualization, use, and outcomes associated with compassion in the care of youth with childhood-onset disabilities.
Methods
A protocol was developed based on the Joanna Briggs Institute (JBI) scoping review method. MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and EBSCOhost CINAHL, were searched.
Results
Eight studies were selected for inclusion; four used quantitative methodology, and four used qualitative methods. Compassion was not defined a priori or a posteriori in any of the included studies. The concept of self-compassion was explicitly defined only for parents of youth with childhood-onset disabilities in three studies a priori . The most reported outcome measure was self-compassion in parents of youth with childhood-onset disabilities. Self-compassion among parents was associated with greater quality of life and resiliency and lower stress, depression, shame and guilt.
Discussion
There is limited evidence on the conceptualization, use, and outcomes associated with compassion among youth with childhood-onset disabilities. Self-compassion may be an effective internal coping process among parents of youth with childhood-onset disabilities. Further research is required to understand the meaning of compassion to youth with childhood-onset disabilities, their parents and caregivers.
Systematic review registration
https://doi.org/10.17605/OSF.IO/2GRB4 .
Caring for children and their families at the end-of-life is an essential but challenging aspect of care in the PICU. During and following a child’s death, families often report a simultaneous need for protected privacy and ongoing supportive presence from staff. Balancing these seemingly paradoxical needs can be difficult for PICU staff and can often lead to the family feeling intruded upon or abandoned during their end-of-life experience. In this “Pediatric Critical Care Medicine Perspectives” piece, we reframe provision of privacy at the end-of-life in the PICU and describe an essential principle that aims to help the interprofessional PICU team simultaneously meet these two opposing family needs: “Supported Privacy.” In addition, we offer concrete recommendations to actualize “Supported Privacy” in the PICU, focusing on environmental considerations, practical needs, and emotional responses. By incorporating the principles of “Supported Privacy” into end-of-life care practices, clinicians can support the delivery of high-quality care that meets the needs of children and families navigating the challenges and supports of end-of-life in the PICU.
Nurses in NICUs report insufficient education as a persistent barrier to providing quality neonatal palliative care (NPC). Since existing literature on educational interventions in NPC is limited, this review aimed to identify and narratively synthesize literature both about nurses’ attitudes toward NPC and the NPC education received by nurses. We conducted a nonsystematic narrative literature review. Four themes were identified from the 28 articles included in this review. These were as follows: (a) nursing work in NPC, (b) NICU nurses’ experiences and perceptions of NPC, (c) facilitators and barriers to nursing work in NPC, and (d) educational interventions in NPC. This literature review identified studies about NICU nurses’ experiences and education in providing NPC. NICU nurses both desired and lacked education in NPC. This literature review identifies the importance of developing and evaluating NPC education for nurses.
I had thrown my notice of termination in the mailbox of my nursing manager. After 13 years in the intensive care unit, many weekends and two children who could only experience their parents together once a month, it was time for a change. Late shift on Friday: The feeling of only having six months left to work here was strange, but I decided to suppress the pain of separation. When I reported for duty, I was given two monitoring patients and a critical case. The critical patient had had a major abdominal procedure the day before and had already complained of shortness of breath to the colleagues in the early shift. When I entered the room, the approximately 50-year-old man was already sitting upright in bed, sweating and gasping for air. Within a few minutes his condition deteriorated dramatically and we had to start resuscitation.
Purpose: To assess the feelings and knowledge of health care professionals (HCPs) about gasping in dying patients in neonatal intensive care units (NICUs) and pediatric intensive care units (PICUs). Methods: A 9-item questionnaire addressed to 488 HCPs (physicians, nurses, and nursing assistants) of 2 NICUs and 2 PICUs. Questions were about HCPs' feelings when confronted with gasping, their knowledge, and their opinions on what to tell family members. Results: Responses were obtained from 248 staff members. Of the respondents, 43% felt that gasping was painful to the patient and most felt that witnessing gasps was distressing for the parents, and 77% reported being distressed by witnessing gasps. Conclusions: Efforts are needed to educate HCPs about the physiology of gasping, to help them to cope with gasping, and to give better support to parents.
Objectives—This report presents final 2007 data on the 10 leading causes of death in the United States by age, race, sex, and Hispanic origin. Leading causes of infant, neonatal, and postneonatal death are also presented. This report supplements the Division of Vital Statistics’ annual report of final mortality statistics.
Methods—Data in this report are based on information from all death certificates filed in the 50 states and the District of Columbia in 2007. Causes of death classified by the International Classification of Diseases, Tenth Revision (ICD–10) are ranked according to the number of deaths assigned to rankable causes. Cause-of-death statistics are based on the underlying cause of death.
Results—In 2007, the 10 leading causes of death were, in rank order: Diseases of heart; Malignant neoplasms; Cerebrovascular diseases; Chronic lower respiratory diseases; Accidents (unintentional injuries); Alzheimer’s disease; Diabetes mellitus; Influenza and pneumonia; Nephritis, nephrotic syndrome and nephrosis; and Septicemia. They accounted for approximately 76 percent of all deaths occurring in the United States. Differences in the rankings are evident by age, sex, race, and Hispanic origin. Leading causes of infant death for 2007 were, in rank order: Congenital malformations, deformations and chromosomal abnormalities; Disorders related to short gestation and low birth weight, not elsewhere classified; Sudden infant death syndrome; Newborn affected by maternal complications of pregnancy; Accidents (unintentional injuries); Newborn affected by complications of placenta, cord and membranes; Bacterial sepsis of newborn; Respiratory distress of newborn; Diseases of the circulatory system; and Neonatal hemorrhage. Important variations in the leading causes of infant death are noted for the neonatal and postneonatal periods.
Objectives—This report presents final 2004 data on the 10 leading causes of death in the United States by age, race, sex, and Hispanic origin. Leading causes of infant, neonatal, and postneonatal death are also presented. This report supplements the annual report of final mortality statistics.
Methods—Data in this report are based on information from all death certificates filed in the 50 states and the District of Columbia in 2004. Causes of death classified by the International Classification of Diseases, Tenth Revision (ICD–10) are ranked according to the number of deaths assigned to rankable causes.
Results—In 2004, the 10 leading causes of death were (in rank order) Diseases of heart; Malignant neoplasms; Cerebrovascular diseases; Chronic lower respiratory diseases; Accidents (unintentional injuries); Diabetes mellitus; Alzheimer’s disease; Influenza and pneumonia; Nephritis, nephrotic syndrome and nephrosis; and Septicemia and accounted for about 78 percent of all deaths occurring in the United States. Differences in the ranking are evident by age, sex, race, and Hispanic origin. Leading causes of infant death for 2004 were (in rank order) Congenital malformations, deformations and chromosomal abnormalities; Disorders related to short gestation and low birth weight, not elsewhere classified; Sudden infant death syndrome; Newborn affected by maternal complications of pregnancy; Accidents (unintentional injuries); Newborn affected by complications of placenta, cord and membranes; Respiratory distress of newborn; Bacterial sepsis of newborn; Neonatal hemorrhage; and Diseases of the circulatory system. Important variation in the leading causes of infant death is noted for the neonatal and postneonatal periods.
OBJECTIVE. Despite recognition that dying children and their families have unique palliative care needs, there has been little empirical inquiry of parent perspectives to improve the quality of end-of-life care and communication. The purpose of this study was to identify and describe the priorities and recommendations for end-of-life care and communication from the parents' perspective. METHODS. This was a qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires, conducted at 3 pediatric ICUs in Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after withdrawal of life support participated in this study. We measured parent-identified priorities for end-of-life care and communication. RESULTS. Parents identified 6 priorities for pediatric end-of-life care including honest and complete information, ready access to staff, communication and care coordination, emotional expression and support by staff, preservation of the integrity of the parent-child relationship, and faith. CONCLUSIONS. Parental priorities and recommendations offer simple yet compelling guidance to improve pediatric end-of-life clinical practice and research.
Background Individuals with intellectual disability are at higher risk of premature death compared with individuals without intellectual disability, and therefore parents of people with intellectual disability are more likely to outlive their children. However, there has been relatively little research investigating the bereavement experiences of parents of deceased children with intellectual disability.
Method Semi-structured interviews were used to explore the experiences of nine mothers whose child with intellectual disability had died. The transcripts were analysed qualitatively using Interpretative Phenomenological Analysis.
Results Five themes emerged from the analysis: loss, benefit finding, coping, sources of support and medical relationships. An analysis of the accounts indicated similarities and differences between the experiences of the mothers. In particular, continuing in their caring role by working within the world of intellectual disability following the death of their child was important to all of the mothers. Support from similarly bereaved parents was the most useful source of support, although it was not always readily accessible.
Conclusions Implications for theory and practice are described including suggestions that service providers should aim to maintain links with families after the death of their child, a parent-to-parent programme that enables parents to contact others in a similar situation might be beneficial, and further research into the functions of coping strategies and supports in loss would be worthwhile.
The present prospective study examined cognitive schemata and processing among 93 parents bereaved by infant death. The Trauma Constellation Identification Scale (TCIS) was used to assess maladaptive cognitive schemata associated with the loss. The impact of pre-, peri-, and post-trauma factors on the TCIS scores was assessed. Compared to parents who had not lost an infant, bereaved parents displayed significantly higher TCIS scores. High TCIS scores were significantly associated with PTSD as well as general symptomatology. Although interesting gender differences were found, the variables most strongly related to TCIS scores were posttraumatic emotional coping and cognitive processing.
Health care professionals experience grief when caring for children with life-threatening conditions. Harriet Lane Compassionate Care, the pediatric palliative care program of the Johns Hopkins Children's Center, created an action plan to support health care professionals; one intervention-- the bereavement debriefing session - was specifically aimed at providing emotional support and increasing one's ability to manage grief. A structured format for conducting bereavement debriefing sessions was developed, and 113 sessions were held in a three-year period; data were collected to capture themes discussed. Bereavement debriefing sessions were conducted most frequently after unexpected deaths or deaths of long-term patients. Though attendance included all disciplines, nurses attended the sessions most often. Self-report evaluation forms revealed that health care professionals found the sessions helpful. Bereavement debriefing sessions can be one aspect of an effective approach to supporting health care professionals in managing their grief in caring for children with life-threatening conditions.
In their research, scholars have documented racial and ethnic differences in end-of-life care preferences, which have translated into cultural barriers. However, few studies have explained the racial differences. In the present study, focus groups with semi-structured follow-up interviews were utilized to elicit explanations for variance in decision making in a sample of Black and White community-dwelling residents. Participants identified specific cultural beliefs, values, and communication patterns that can be used to promote cultural competency among practitioners who provide care at end of life.
In this study, the authors describe the experiences of Mexican American family members who immigrated to the United States and then experienced the death of a child. Participants described difficulties they encountered crossing the border, leaving the culture of their homeland, and then caring for a seriously ill child. Key themes that characterized their experience of being far from home included a backdrop of poverty, absence of traditional social support, and challenges caring for healthy siblings. Participants made comparisons between health care in Mexico and the United States and assessed the trade-off they made to come to the United States, discussing access to medical care and how they were able to relate to health care providers. Further, participants conveyed how rituals from their home country were important in maintaining connections with the child who died. Based on these themes, clinical implications and strategies that focus on understanding participants' experiences with past traumas, communication and literacy needs, and the challenges of living in poverty--especially with a critically ill child--are needed.
The care of children in the U.S. with life-limiting illnesses is inadequate. Misallocated resources, flawed assumptions and models of care, and a lack of appropriate professional education foster a costly, inefficient system that falls short of its true potential. This article details the evolution of a regional, shared approach to address these issues, the District of Columbia Pediatric Palliative Care Collaboration (DCPPCC), and includes its evolution, preliminary clinical results, and assessment of barriers encountered.