Ashleigh Butler

A national Position Statement on adult end-of-life care in critical care

Publisher: Elsevier BV

Date: 07-2022

DOI: 10.1016/J.AUCC.2021.06.006

Abstract: Patient death in critical care is not uncommon. Rather, the provision of end-of-life care is a core feature of critical care nursing, yet not all nurses feel adequately prepared for their role in the provision of end-of-life care. For this reason, the Australian College of Critical Care Nurses (ACCCN) supported the development of a Position Statement to provide nurses with clear practice recommendations to guide the provision of end-of-life care, which reflect the most relevant evidence and information associated with end-of-life care for adult patients in Australian critical care settings. A systematic literature search was conducted between June and July, 2020 in CINAHL Complete, Medline, and EMBASE databases to locate research evidence related to key elements of end-of-life care in critical care. Preference was given to the most recent Australian or Australasian research evidence, where available. Once the practice recommendations were drafted in accordance with the research evidence, a clinical expert review panel was established. The panel comprised clinically active ACCCN members with at least 12 months of clinical experience. The clinical expert review panel participated in an eDelphi process to provide face validity for practice recommendations and a subsequent online meeting to suggest additional refinements and ensure the final practice recommendations were meaningful and practical for critical care nursing practice in Australia. ACCCN Board members also provided independent review of the Position Statement. This Position Statement is intended to provide practical guidance to critical care nurses in the provision of adult end-of-life care in Australian critical care settings.

Family‐centred care in the paediatric intensive care unit: an integrative review of the literature

Publisher: Wiley

Date: 26-12-2013

DOI: 10.1111/JOCN.12498

Abstract: To review extant research on family-centred care in a paediatric intensive care environment and identify gaps in the literature. Family-centred care is currently a core concept in paediatric nursing, focusing on the premise that families are central to a child's well-being, and as such, should be included as equal members of the child's healthcare team. Due to the nature of critical care, family-centred care may be challenging to implement and maintain. An integrative literature review. The review was conducted using the Cumulative Index to Nursing and Allied Health Literature, PubMed, OVID MEDLINE and Google Scholar databases, from 1990 to present. The search focused on the following terms: 'p(a)ediatric critical care', 'paediatric intensive care unit', 'family cent(e)red care', 'parental needs', 'family presence' and 'family/nurse roles'. Additionally, the search was limited to studies conducted in a developed country and published in English. Eighteen studies were included in the review. The results demonstrated that implementing family-centred care into a paediatric intensive care environment posed several challenges. The discrepancy between nurses' and parents' perception of their roles, the reluctance of medical staff to share potentially negative or rapidly changing information, restrictive family presence and poor understanding of family needs emerged as the key difficulties. No studies evaluated strategies to improve family-centred care practice. Family-centred care presents many challenges in a paediatric intensive care environment however, nurses are uniquely positioned to foster relationships with families, encourage accurate and honest information sharing and advocate for families to be present when they choose. This review outlines the extant research to enhance awareness of the unique state of family-centred care in paediatric intensive care and makes recommendations for future research.

The impact of the social and physical environments on parent–healthcare provider relationships when a child dies in PICU: Findings from a grounded theory study

Publisher: Elsevier BV

Date: 02-2019

DOI: 10.1016/J.ICCN.2017.12.008

Abstract: This study explores the influences of the paediatric intensive care environment on relationships between parents and healthcare providers when children are dying. It forms part of a larger study, investigating parental experiences of the death of their child in intensive care. Constructivist grounded theory. Four Australian paediatric intensive care units. Audio-recorded, semi-structured interviews were conducted with twenty-six bereaved parents. Data were analysed using the constant comparison and memoing techniques common to grounded theory. The physical and social environment of the intensive care unit influenced the quality of the parent-healthcare provider relationship. When a welcoming, open environment existed, parents tended to feel respected as equal and included members of their child's care team. In contrast, environments that restricted parental presence or lacked resources for parental self-care could leave parents feeling like 'watchers', excluded from their child's care. The paediatric intensive care unit environment either welcomes and includes parents of dying children into the care team, or demotes them to the status of 'watcher'. Such environments significantly influence the relationships parents form with healthcare staff, their ability to engage in elements of their parental role, and their experiences as a whole.

The changing nature of relationships between parents and healthcare providers when a child dies in the paediatric intensive care unit

Publisher: Wiley

Date: 22-08-2017

DOI: 10.1111/JAN.13401

Abstract: To explore bereaved parents' interactions with healthcare providers when a child dies in a paediatric intensive care unit. Although most children admitted to a paediatric intensive care unit will survive, 2-5% will die during their stay. The parents of these children interact and form relationships with numerous healthcare staff during their child's illness and death. Although previous studies have explored the parental experience of child death in intensive care generally, the nature of their relationships with healthcare providers during this time remains unknown. This study used a constructivist grounded theory approach. Data were collected via semi-structured, audio-recorded interviews with 26 bereaved parents from four paediatric intensive care units over 18 months in 2015-2016. Constant comparative analysis and theoretical memos were used to analyse the data. The theory "Transitional togetherness" demonstrates the changing nature of the parent-healthcare provider relationship across three key phases of the parents' journey. Phase one, "Welcoming expertise," focuses on the child's medical needs, with the healthcare provider dominant in the relationship. Phase two, "Becoming a team," centres around the parents' need to recreate a parental role and work collaboratively with healthcare providers. Finally, "Gradually disengaging" describes the parents' desire for the relationship to continue after the child's death as a source of support until no longer needed. Findings from this study offer valuable insights into the changing nature of the parent-healthcare provider relationship and highlight the key foci of the relationship at each stage of the parental journey.

Family Experience and PICU Death: A Meta-Synthesis

Publisher: American Academy of Pediatrics (AAP)

Date: 10-2015

DOI: 10.1542/PEDS.2015-1068

Abstract: The PICU is the most common site for inpatient pediatric deaths worldwide. The impact of this clinical context on family experiences of their child’s death is unclear. The objective of the study was to review and synthesize the best available evidence exploring the family experience of the death of their child in the PICU. Studies were retrieved from CINAHL Plus, OVID Medline, Scopus, PsycINFO, and Embase. Gray literature was retrieved from greylit.com, opengrey.edu, Trove, Worldcat, and Google scholar. Study selection was undertaken by 4 reviewers by using a multistep screening process, based on a previously developed protocol (International Prospective Register of Systematic Reviews 2015:CRD42015017463). Data was extracted as first-order constructs (direct quotes) or second-order constructs (author interpretations) onto a predeveloped extraction tool. Data were analyzed by thematic synthesis. One main theme and 3 subthemes emerged. “Reclaiming parenthood” encompasses the ways in which the parental role is threatened when a child is dying in the PICU, with the subthemes “Being a parent in the PICU,” “Being supported,” and “Parenting after death” elucidating the ways parents work to reclaim this role. The review is limited by a language bias, and by the limitations of the primary studies. When a child dies in a PICU, many aspects of the technology, environment, and staff actions present a threat to the parental role both during and after the child’s death. Reclaiming this role requires support from health care providers and the wider community.

Bereaved parents' experiences of the police in the paediatric intensive care unit

Publisher: Elsevier BV

Date: 2019

DOI: 10.1016/J.AUCC.2018.02.004

Abstract: A child's death in the intensive care unit is often sudden and unexpected, requiring the involvement of the state coroner to investigate both the cause and the circumstances surrounding the death. This process often involves the police, who arrive in intensive care to identify the body and collect statements from the parents. At present, very little is known about parents' experiences of this process. To explore bereaved parents' experiences of police presence in intensive care, as part of routine coronial investigations. The findings arose from a larger study on bereaved parents' experiences of the death of a child in the intensive care unit. Secondary analysis of incidental data from a larger grounded theory study. Nine bereaved parents from two paediatric intensive care units (PICUs) mentioned police presence in the PICU during their original audio-recorded, semistructured interviews. These data were extracted, and thematic analysis techniques were used to identify key themes. Three main concepts were identified with the parents' experiences: (i) timing of police interviews (ii) the impacts of police presence and (iii) the demeanour of the officers. Overall, the parents' experiences of police presence were negative. They felt that police arrived too soon after their child's death and took too long taking their statements, hindering their ability to say goodbye. The presence of police officers also made parents feel as though they were being accused of involvement in their child's death. Finally, several participants also experienced inappropriate or unsympathetic attitudes from the police officers attending their child's death. Findings from our study indicate that parents' experiences of police presence in the PICU as part of a coronial investigation may be negative, leaving lasting impressions on their experiences of their child's death. These findings provide areas for improvements in care delivery and the treatment of newly bereaved parents during the early phases of a coronial investigation.

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

Publisher: Ovid Technologies (Wolters Kluwer Health)

Date: 09-2019

DOI: 10.1097/PCC.0000000000002040

Abstract: 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. Thematic analysis of incidental data from a larger grounded theory study. Four Australian PICUs. 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. None. 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, de-medicalized 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. 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 in idual healthcare provider level and within in idual PICUs.

Becoming a Team: The Nature of the Parent-Healthcare Provider Relationship when a Child is Dying in the Pediatric Intensive Care Unit

Publisher: Elsevier BV

Date: 09-1989

DOI: 10.1016/J.PEDN.2018.02.002

Abstract: To explore bereaved parents' perspectives of parent and staff roles in the pediatric intensive care unit when their child was dying, and their relationships with healthcare staff during this time. Constructivist grounded theory was used to undertake this study. Semi-structured interviewers were conducted with 26 bereaved parents recruited from four Australian pediatric intensive care units. The constant comparative method, coupled with open, focused, and theoretical coding were used for data analysis. Becoming a team explores the changes that occurred to the parent-healthcare provider relationship when parents realized their child was dying and attempted to become part of their child's care team. When the focus of care changed from 'life-saving' to 'end-of-life', parents' perspectives and desires of their and the healthcare providers' roles changed. Parents' attempted to reconstruct their roles to match their changing perspectives, which may or may not have been successful, depending on their ability to successfully negotiate these roles with healthcare providers. Findings offer insights into parental understandings of both the parental and healthcare provider roles for parents of dying children in intensive care, and the ways in which the parent-healthcare provider relationships can influence and be influenced by changes to these roles. Successful parent-healthcare provider relationships require an understanding of the parental and healthcare provider role from the parents' perspective. The meanings of the parental and healthcare provider roles should be explored with parents of dying children, and supported as much as possible to enable the development of a collaborative relationship.

Nurses' perceptions of working with families in the paediatric intensive care unit

Publisher: Wiley

Date: 29-05-2015

DOI: 10.1111/NICC.12142

Abstract: Research exploring nurses' experiences working with families in paediatric intensive care unit (PICU) is limited. No studies have been undertaken in a mixed adult-paediatric ICU. To explore nurses' perceptions of working with families of critically ill children in a mixed adult-paediatric intensive care unit (ICU). Descriptive qualitative design. Five PICU nurses participated in semi-structured interviews. Data were analysed using thematic analysis. Trustworthiness was enhanced using an audit trail, member checks and peer review of all data. Three main themes and one overarching theme emerged. Role confusion and delineation examined the roles which nurses ascribed to themselves and the families and demonstrated the conflict which could arise if roles were challenged. Information sharing demonstrated the positive and negative ways in which nurses utilized information with families in their daily practice. The contextual environment of the PICU scrutinized the physical, cultural and institutional factors which impacted on the nurses' ability to work with families in the PICU. Finally, the overarching theme Competing values explores the interplay between the nurses' personal values and those of the PICU and the institution. Working with families in a mixed adult-paediatric ICU is influenced by multiple personal and institutional factors. The value placed on families and on the time nurses spent with them often competed for priority with nurses' other values and the wider culture of the PICU. The potential for role confusion, the management of information and the physical environment of the PICU further contributed to variability in nurses' working with families. The results highlighted a need for education for both nurses and medical staff who work with families of critically ill children. Additionally, the need for each PICU to have a written policy on family presence and participation is crucial to guide practice and maintain continuity of care.

Critical care nurses’ experiences of caring for a dying child: A qualitative evidence synthesis

Publisher: Wiley

Date: 03-06-2018

DOI: 10.1111/JAN.13701

Abstract: To synthesize qualitative research examining the experience of critical care nurses caring for a dying child. Caring for a dying child remains one of the most difficult aspects of nursing, potentially leading to personal and professional distress. A thorough understanding of this experience for critical care nurses allows for improved delivery of care and support for the nurse. A qualitative evidence synthesis was undertaken, informed by Thomas and Harden's thematic synthesis methodology. Studies were retrieved from CINAHL Plus, Scopus, OVID Medline, and Embase, alongside hand-searching reference lists in February 2016. Two reviewers independently assessed each study using a multistep screening process and performed critical appraisal of each included study. Data were extracted onto a predeveloped tool and analysed using thematic analysis. There is a blurred line between the role of the nurse as a person or a professional while caring for the child and family throughout hospitalization and during and after the death. Each stage of care involves tasks and emotions that highlight the changing dominance of the nurse as either a person or professional. Personal, interpersonal, and contextual factors affect delivery of care and impact of the death of the child on the critical care nurse. Reviewing in idual and institutional practices could improve provision of care, interprofessional collaboration, and support provided to staff involved.

Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously

Publisher: SAGE Publications

Date: 04-11-2019

DOI: 10.1177/0269216319885566

Abstract: Research ethics committees are commonly perceived as a ‘barrier’ to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to applications for research with other populations. Whether or not this is the case in practice is unknown. The aim of this study was to explore committees’ concerns, expectations and decisions for research applications involving seriously ill children submitted for review in the United Kingdom. Content analysis of committee meeting minutes, decision letters and researcher response letters. Chief investigators for National Institute of Health Research portfolio studies involving seriously ill children were contacted for permission to review their study documents. Of the 77 applications included in this study, 57 received requests for revisions at first review. Committee expectations and concerns commonly related to participant information sheets, methodology, consent, recruitment or formatting. Changes were made to 53 of these studies, all of which were subsequently approved. Our findings suggest that committees review applications for research involving seriously ill children with the same scrutiny as applications for research with other populations. Yet, the perception that committees act as a barrier to this type of research persists. We suggest that this perception remains due to other factors including, but not limited to, the high levels of formatting or administrative revisions requested by committees or additional study requirements needed for research involving children, such as multiple versions of consent forms or participant information sheets.

Palliative care for children with complex cardiac conditions: survey results

Publisher: BMJ

Date: 26-07-2021

DOI: 10.1136/ARCHDISCHILD-2020-320866

Abstract: To explore perspectives of paediatric cardiac and palliative care professionals on providing palliative care to children with complex cardiac conditions. A national survey including closed-ended and open-ended questions as well as clinical scenarios designed to capture referral practices, attitudes towards palliative care, confidence delivering key components of palliative care and perspectives on for whom to provide palliative care. Responses to closed-ended questions and scenarios were analysed using descriptive statistics. Open-ended responses were analysed thematically. Paediatric cardiac and palliative care professionals caring for children with complex cardiac conditions in the UK. 177 professionals (91 cardiac care and 86 palliative care) responded. Aspects of advance care planning were the most common reasons for referral to palliative care. Palliative care professionals reported greater confidence than cardiac colleagues with such discussions. Clinicians agreed that children with no further surgical management options, comorbid genetic disorders, antenatal diagnosis of a single ventricle, ventricular device in situ, symptomatic heart failure and those awaiting heart transplantation would benefit from palliative care involvement. Components of palliative care, such as advance care planning, can be provided by cardiac care professionals alongside the disease-directed care of children with complex cardiac conditions. Further research and training are needed to address confidence levels in cardiac care professionals in delivering components of palliative care as well as clarification of professional roles and parent preferences in delivery of family-centred care for children with complex cardiac conditions.

Welcoming expertise: Bereaved parents’ perceptions of the parent–healthcare provider relationship when a critically ill child is admitted to the paediatric intensive care unit

Publisher: Elsevier BV

Date: 2019

DOI: 10.1016/J.AUCC.2017.09.004

Abstract: Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child's well-being, parents must navigate both a challenging environment and numerous new relationships with healthcare staff. How parents form relationships with staff and how they perceive both their own and the healthcare providers' roles in this early stage of their paediatric intensive care journey is currently unknown. This paper explores bereaved parents' perceptions of their role and their relationships with healthcare providers when their child is admitted to the intensive care unit, as part of a larger study exploring their experiences when their child dies in intensive care. A constructivist grounded theory approach was utilised to recruit 26 bereaved parents from 4 Australian intensive care units. Parents participated in audio-recorded, semi-structured interviews lasting 90-150min. All data were analysed using the constant comparative analysis processes, supported by theoretical memos. Upon admission, parents viewed healthcare providers as experts, both of their child's medical care and of the hospital system. This expertise was welcomed, with the parent-healthcare provider relationship developing around the child's need for medical care. Parents engaged in 2 key behaviours in their relationships with staff: prioritising survival, and learning 'the system'. Within each of these behaviours are several subcategories, including 'Stepping back', 'Accepting restrictions' and 'Deferring to medical advice'. The relationships between parents and staff shift and change across the child's admission and subsequent death in the paediatric intensive care unit. However, upon admission, this relationship centres around the child's potential survival and their need for medical care, and the parent's recognition of the healthcare staff as experts of both the child's care and the hospital system.

Ethical and Practical Realities of Using Letters for Recruitment in Bereavement Research

Publisher: Wiley

Date: 25-05-2017

DOI: 10.1002/NUR.21800

Abstract: Recruitment of participants into bereavement research may present many challenges for the research team. At present, there is little consensus for researchers and ethics committees on the most appropriate method of recruitment. There is some evidence that participants prefer to be contacted about research studies via letters. However, recruitment involving the use of a letter can occur in a number of ways, each with ethical and practical benefits and limitations. In a study of the experiences of bereaved parents, we used letters in three ways: direct mailing from the research team with an opt-out option permission to mail letters obtained by social workers from a hospital-based follow-up program during routine contact and letters mailed from the hospital's PICU research nurse at the hospital with instruction on how to opt in. In this paper, the practical and ethical realities of each method are highlighted, using ex les from our own experiences. Nineteen parents also provided reflections in follow-up phone calls. While direct researcher contact is perhaps the most feasible for researchers, ethical concerns may render it unacceptable. While contact via a known member of a follow-up program is more ethically appropriate for participants, it also presents significant practical issues. We suggest that contact via a representative of the healthcare institution provides the best balance of ethical and practical acceptability for both participants and the research team, but responsiveness to the ethical and practical requirements of the study is crucial in ensuring it can be successfully undertaken. © 2017 Wiley Periodicals, Inc.

“Some were certainly better than others” – Bereaved parents’ judgements of healthcare providers in the paediatric intensive care unit: A grounded theory study

Publisher: Elsevier BV

Date: 04-2018

DOI: 10.1016/J.ICCN.2017.12.003

Abstract: To explore bereaved parents' judgements of healthcare providers, as part of a larger study examining their perceptions of the death of a child in the paediatric intensive care unit. Constructivist grounded theory. Four Australian paediatric intensive care units. Semi-structured, audio recorded interviews were undertaken with 26 bereaved parents 6-48 months after their child's death. Data were transcribed verbatim and analysed using open, focused and theoretical coding and the constant comparative method. Bereaved parents judged healthcare providers as 'good' or 'poor' based on behaviours they exhibit. 'Good' behaviours were further sub ided by parents into four categories: 'Better than others', 'good', 'very good', and 'fantastic'. Common behaviours identified as 'good' included provision of practical assistance, facilitation of parental presence, and sharing of information. In contrast, the concept of 'poor' had no sub ision: all identified behaviours, including diminishing parental concern, mishandling hope, adopting an unprofessional demeanour, judging the child's worth, and mishandling communication, were equally detrimental. Findings demonstrate that bereaved parents have clear opinions on what constitutes 'good' and 'poor' behaviours when their child is dying. These judgements provide clear ex les for healthcare providers who provide end-of-life care, ensuring they provide high quality care.

Bereaved parents’ experiences of research participation

Publisher: Springer Science and Business Media LLC

Date: 07-11-2018

DOI: 10.1186/S12904-018-0375-4

The development of theoretical sampling in practice

Publisher: Elsevier BV

Date: 10-2018

DOI: 10.1016/J.COLEGN.2018.01.002

A Guide to Writing a Qualitative Systematic Review Protocol to Enhance Evidence‐Based Practice in Nursing and Health Care

Publisher: Wiley

Date: 20-01-2016

DOI: 10.1111/WVN.12134

Abstract: The qualitative systematic review is a rapidly developing area of nursing research. In order to present trustworthy, high-quality recommendations, such reviews should be based on a review protocol to minimize bias and enhance transparency and reproducibility. Although there are a number of resources available to guide researchers in developing a quantitative review protocol, very few resources exist for qualitative reviews. To guide researchers through the process of developing a qualitative systematic review protocol, using an ex le review question. The key elements required in a systematic review protocol are discussed, with a focus on application to qualitative reviews: Development of a research question formulation of key search terms and strategies designing a multistage review process critical appraisal of qualitative literature development of data extraction techniques and data synthesis. The paper highlights important considerations during the protocol development process, and uses a previously developed review question as a working ex le. This paper will assist novice researchers in developing a qualitative systematic review protocol. By providing a worked ex le of a protocol, the paper encourages the development of review protocols, enhancing the trustworthiness and value of the completed qualitative systematic review findings. Qualitative systematic reviews should be based on well planned, peer reviewed protocols to enhance the trustworthiness of results and thus their usefulness in clinical practice. Protocols should outline, in detail, the processes which will be used to undertake the review, including key search terms, inclusion and exclusion criteria, and the methods used for critical appraisal, data extraction and data analysis to facilitate transparency of the review process. Additionally, journals should encourage and support the publication of review protocols, and should require reference to a protocol prior to publication of the review results.

Learning style preferences of Australian accelerated postgraduate pre-registration nursing students: A cross-sectional survey

Publisher: Elsevier BV

Date: 2018

DOI: 10.1016/J.NEPR.2017.10.011

Abstract: Graduate entry programs leading to registration are gaining momentum in nursing. These programs attract student cohorts with professional, cultural, gender and age ersity. As a consequence of this ersity, such accelerated programs challenge traditional pedagogical methods used in nursing and require different approaches. To date, however, there has been limited research on the learning styles of students undertaking these programs to inform academics involved in their delivery. Kolb's Experiential Learning model has been used widely in a variety of educational settings because it is based on the theory of experiential learning. More recently VARK (Visual, Aural, Read/write and Kinaesthetic) model has become popular. The aim of this study was to investigate the learning styles of two cohorts of graduate entry nursing students undertaking an accelerated masters-level program. This was a cross-sectional survey of two cohorts of Master of Nursing Practice students enrolled at a large Australian university. The students were more inclined toward converging (practical) and least toward concrete experience (experiencing) learning styles. The majority of students were more inclined toward kinaesthetic and least toward aural learning style. Findings have implications for academics engaged in teaching graduate entry nursing students.

Parents' experiences of healthcare provider actions when their child dies: An integrative review of the literature

Publisher: Wiley

Date: 30-11-2014

DOI: 10.1111/JSPN.12097

Abstract: To review, critique and synthesise current research studies that examine parental perceptions of healthcare provider actions during and after the death of a child. Five main themes were synthesised from the literature: staff attitudes and affect follow-up care and ongoing contact communication attending to the parents and continuity of care. This review helps to identify important aspects of paediatric end-of-life care as recognised by parents, with the intention of placing the family at the centre of any future end-of-life care education or policy rotocol development.

Researching people who are bereaved: Managing risks to participants and researchers

Publisher: SAGE Publications

Date: 03-04-2017

DOI: 10.1177/0969733017695656

Abstract: Conducting qualitative research, especially in areas considered ‘sensitive’, presents many challenges. The processes involved in such research often expose both participants and the research team to a vast array of risks, which may cause damage to their personal, professional, social and cultural worlds. Historically, these risks have been considered independent of each other, with most studies exploring only the risks to participants or only risks to researchers. Additionally, most researchers only consider risks during data collection, frequently overlooking risks that might be present during other phases of the research project. We aim, therefore, to bring together this fractured literature to enable an integrated exploration of the current academic discourse relating to risks to participants with the literature exploring risks to researchers across all phases of the research process. This article draws on personal experiences to highlight ethical issues and risks encountered by both participants and researchers throughout all phases of a research project. Beginning in recruitment, we discuss the risk of secondary distress in participants arising from researcher contact and then explore the concept of informed consent during grief and bereavement research. We then focus on risks present during data collection, examining risks for participants, such as emotional distress, and potential safety risks for the research team. Finally, we consider the risks which arise in data analysis, including both confidentiality and the possibility of researcher burnout. Previous recommendations are summarised, with new management strategies suggested based on lessons learned along the way.

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

Publisher: SAGE Publications

Date: 25-06-2018

DOI: 10.1177/1074840718783470

Abstract: 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.

Murdoch Childrens Research Institute

Location: Australia

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Deakin University

Location: Australia

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La Trobe University

Location: Australia

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University College London Institute Of Child Health Louis Dundas Centre For Children's Palliative Care

Location: United Kingdom of Great Britain and Northern Ireland

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Discovery Early Career Researcher Award - Grant ID: DE230101123

Start Date: 07-2023

End Date: 03-2027

Amount: $375,000.00

Funder: Australian Research Council