Dataset Information

Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: a qualitative interview study.

ABSTRACT: OBJECTIVES:To provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU). DESIGN:An in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts. SETTING:A PICU in a large National Health Service (NHS) tertiary children's hospital in the West Midlands, UK. PARTICIPANTS:17 parents of 11 children who had died in the PICU. RESULTS:Five interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a 'place of acceptance'.(5) Families perceive benefits to receiving end of life care for their child in a PICU. CONCLUSIONS AND IMPLICATIONS:The death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care.

SUBMITTER: Mitchell S

PROVIDER: S-EPMC6528052 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: a qualitative interview study.

Mitchell Sarah S Spry Jenna L JL Hill Emma E Coad Jane J Dale Jeremy J Plunkett Adrian A

BMJ open 20190509 5

<h4>Objectives</h4>To provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU).<h4>Design</h4>An in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on t ...[more]

PMID: 31072863

Similar Datasets

Project description:IntroductionWe wished to obtain the experiences felt by patients during their ICU stay using an original questionnaire and to correlate the memories of those experiences with health-related quality of life (HR-QOL).MethodsWe conducted a prospective study in 10 Portuguese intensive care units (ICUs). Six months after ICU discharge, an original questionnaire on experiences of patients during their ICU stay, the recollection questionnaire, was delivered. HR-QOL was evaluated simultaneously, with the EQ-5D questionnaire. Between 1 September 2002 and 31 March 2003 1433 adult patients were admitted. ICU and hospital mortalities were 21% and 28%, respectively. Six months after ICU discharge, 464 patients completed the recollection questionnaire.ResultsThirty-eight percent of the patients stated they did not remember any moment of their ICU stay. The ICU environment was described as friendly and calm by 93% of the patients. Sleep was described as being good and enough by 73%. The experiences reported as being more stressful were tracheal tube aspiration (81%), nose tube (75%), family worries (71%) and pain (64%). Of respondents, 51% experienced dreams and nightmares during their ICU stay; of these, 14% stated that those dreams and nightmares disturb their present daily life and they exhibit a worse HR-QOL. Forty-one percent of patients reported current sleep disturbances, 38% difficulties in concentrating in current daily activities and 36% difficulties in remembering recent events. More than half of the patients reported more fatigue than before the ICU stay. Multiple and linear regression analysis showed that older age, longer ICU stay, higher Simplified Acute Physiology Score II, non-scheduled surgery and multiple trauma diagnostic categories, present sleep disturbances, daily disturbances by dreams and nightmares, difficulties in concentrating and difficulties in remembering recent events were independent predictors of worse HR-QOL. Multicollinearity analysis showed that, with the exception of the correlation between admission diagnostic categories and length of ICU stay (0.47), all other correlations between the independent variables and coefficient estimates included in the regression models were weak (below 0.30).ConclusionThis study suggests that neuropsychological consequences of critical illness, in particular the recollection of ICU experiences, may influence subsequent HR-QOL.

Project description:The paediatric intensive care unit (PICU) provides care to critically ill neonates, infants and children. These patients are vulnerable and susceptible to the environment surrounding them, yet there is little information available on indoor air quality and factors affecting it within a PICU. To address this gap in knowledge we conducted continuous indoor and outdoor airborne particle concentration measurements over a two-week period at the Royal Children's Hospital PICU in Brisbane, Australia, and we also collected 82 bioaerosol samples to test for the presence of bacterial and viral pathogens. Our results showed that both 24-hour average indoor particle mass (PM10) (0.6-2.2μgm-3, median: 0.9μgm-3) and submicrometer particle number (PN) (0.1-2.8×103pcm-3, median: 0.67×103pcm-3) concentrations were significantly lower (p<0.01) than the outdoor concentrations (6.7-10.2μgm-3, median: 8.0μgm-3 for PM10 and 12.1-22.2×103pcm-3, median: 16.4×103pcm-3 for PN). In general, we found that indoor particle concentrations in the PICU were mainly affected by indoor particle sources, with outdoor particles providing a negligible background. We identified strong indoor particle sources in the PICU, which occasionally increased indoor PN and PM10 concentrations from 0.1×103 to 100×103pcm-3, and from 2μgm-3 to 70μgm-3, respectively. The most substantial indoor particle sources were nebulization therapy, tracheal suction and cleaning activities. The average PM10 and PN emission rates of nebulization therapy ranged from 1.29 to 7.41mgmin-1 and from 1.20 to 3.96pmin-1×1011, respectively. Based on multipoint measurement data, it was found that particles generated at each location could be quickly transported to other locations, even when originating from isolated single-bed rooms. The most commonly isolated bacterial genera from both primary and broth cultures were skin commensals while viruses were rarely identified. Based on the findings from the study, we developed a set of practical recommendations for PICU design, as well as for medical and cleaning staff to mitigate aerosol generation and transmission to minimize infection risk to PICU patients.

Dataset Information

Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: a qualitative interview study.

Publications

Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: a qualitative interview study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets