When a Child Dies in the PICU: Practice Recommendations From a Qualitative Study of Bereaved Parents

OBJECTIVES: Around the world, the PICU is one of the most common sites for hospitalized children to die. Although ensuring the best possible care experience for these children and their families is important, clear recommendations for end-of-life and bereavement care, arising from the parents themselves, remain limited within current literature. This report aims to describe bereaved parents' recommendations for improvements in end-of-life care and bereavement follow-up when a child dies in intensive care. DESIGN: Thematic analysis of incidental data from a larger grounded theory study. SETTING: Four Australian PICUs. SUBJECTS: Twenty-six bereaved parents participated in audio-recorded, semi-structured interviews in 2015-2016. Interviews explored their experiences of having a child die in intensive care and their experiences of end-of-life care and bereavement follow-up. Data pertaining to this report were analyzed via thematic analysis. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Bereaved parents identified several areas for care delivery and improvement across three time periods: during hospitalization; during the dying phase; and during bereavement. During hospitalization, parents' recommendations focused on improved communication, changes to the physical environment, better self-care resources, and provision of family support. During the dying phase, parents suggested private, demedicalized rooms, familiar staff members, and support to leave the hospital. Recommendations for care after death focused mainly on the provision of ongoing support from the hospital or local bereavement services, as well as improved information delivery. CONCLUSIONS: Findings from this study offer many concrete recommendations for improvements in care both during and after a child's death. These recommendations range from simple practice changes to larger organizational modifications, offering many potential avenues for change and improvement both on an individual healthcare provider level and within individual PICUs

Gradually Disengaging: Parent-Health care Provider Relationships After a Child's Death in the Pediatric Intensive Care Unit

When a child dies in the intensive care unit, many bereaved parents want relationships with their child’s health care staff to continue in the form of follow-up care. However, the nature of these relationships and how they change across the parents’ bereavement journey is currently unknown. This article explores early and ongoing relationships between parents and health care staff when a child dies in intensive care. Constructivist grounded theory methods were used to recruit 26 bereaved parents from four Australian pediatric intensive care units into the study. Data were collected via audio-recorded, semistructured interviews and analyzed using the constant comparative methods and theoretical memoing. Findings show that these relationships focus on Gradually disengaging, commonly moving through three phases after the child dies: Saying goodbye, Going home, and Seeking supports. These findings provide guidance to health care staff on what families need as they leave the intensive care unit and move through bereavement

Bereaved parents' experiences of research participation

Background: As understandings of the impacts of end-of-life experiences on parents’ grief and bereavement increase, so too does the inclusion of bereaved parents into research studies exploring these experiences. However, designing and obtaining approval for these studies can be difficult, as guidance derived from bereaved parents’ experiences of the research process are limited within the current literature. Methods: We aimed to explore bereaved parents’ experiences of research participation in a larger grounded theory study exploring experiences of the death of a child in the paediatric intensive care unit. Data were obtained during follow-up phone calls made to 19 bereaved parents, five of whom provided data from their spouse, 1 week after their participation in the study. Participants were asked to reflect on their experiences of research participation, with a focus on recruitment methods, timing of research contact, and the location of their interview. Parents’ responses were analysed using descriptive content analysis. Results: Our findings demonstrate that despite being emotionally difficult, parents’ overall experiences of research participation were positive. Parents preferred to be contacted initially via a letter, with an opt in approach viewed most favourably. Most commonly, participants preferred that research contact occurred within 12–24 months after their child’s death, with some suggesting contact after 6 months was also appropriate. Parents also preferred research interviews conducted in their own homes, though flexibility and parental choice was crucial. Conclusions: Findings from this study offer further insight to researchers and research review committees, to help ensure that future studies are conducted in a way that best meets the unique needs of bereaved parents participating in research

Self or other: Directors’ attitudes towards policy initiatives for external board evaluation

Recurrent crises in corporate governance have board practice and created policy pressure to assess the effectiveness of boards. Since the 1990s boards have faced calls to undertake regular, formal evaluation. Since 2010, the UK Corporate Governance Code has urged large corporations to engage outside parties to conduct them at least every three years, a move that other jurisdictions have copied. Despite this policy importance, little research has been conducted into processes or outcomes of board evaluation. This study explores the attitudes of directors on evaluation, whether self-administered or facilitated by others. We find acceptance of the principle but reservations about the value and even honesty in questionnaire-based approaches. We find scepticism about, but also acknowledgement of, the benefits of using outside facilitators, especially for their objectivity and because their interviewing elicits insights into board dynamics. As this practice expands beyond listed companies to non-listed ones, charities, and even governance branches of government, our findings point to a need to professionalise outside facilitation

Breaking the silence: nurses' understandings of change in clinical practice

AIM - This paper reports a study exploring critical care nurses' understandings of change in their practice. BACKGROUND - In contemporary nursing literature, change in clinical nursing practice is generally understood to be a rational process, synonymous with progress. It is seen as invariably contested, and hence difficult to achieve. It is represented as occurring infrequently. This literature effectively silences clinicians as this discourse of change does not recognize or incorporate their views or practices. METHODS - This study was informed by a Foucauldian poststructuralist framework. The participants were 12 critical care nurses who engaged in three individual in-depth, focused interviews. The transcripts were deconstructed to reveal participants' discourses of change and the implications of these discourses for nursing work. The data were generated between 1996 and 1998 as part of a study whose in-depth analysis was completed in 2003. FINDINGS - Change was revealed as a highly complex phenomenon, closely intertwined with understandings of clinical nursing work. Participants showed difficulty in identifying or recalling clinical changes. Several dichotomies shaped their understandings of change, including change/stasis, formal/informal and dramatic/subtle. Their experiences of change frequently conflicted with prevailing dominant understandings, but they did not openly challenge them. Rather, they employed dichotomies, such as abstract/concrete and other/self, to enable them to work with these conflicts. As a result, they engaged in practices such as naming other nurses as 'irrational'

‘Something normal in a very, very abnormal environment’ – Nursing work to honour the life of dying infants and children in neonatal and paediatric intensive care in Australia

publisher: Elsevier articletitle: ‘Something normal in a very, very abnormal environment’ – Nursing work to honour the life of dying infants and children in neonatal and paediatric intensive care in Australia journaltitle: Intensive and Critical Care Nursing articlelink: http://dx.doi.org/10.1016/j.iccn.2015.09.001 content_type: article copyright: Copyright © 2015 Elsevier Ltd. All rights reserved