Mh Bluebond-Langner

Using participant observation in pediatric health care settings: ethical challenges and solutions

Participant observation strategies may be particularly effective for research involving children and their families in health care settings. These techniques, commonly used in ethnography and grounded theory, can elicit data and foster insights more readily than other research approaches, such as structured interviews or quantitative methods. This article outlines recommendations for the ethical conduct of participant observation in pediatric health care settings. This involves a brief overview of the significant contributions that participant observation can bring to our understanding of children and families in health care settings; an examination of the elements of participant observation that are necessary conditions for its effective conduct; an outline of contemporary ethical norms in Canada, the United Kingdom and the United States for research in pediatric health care settings; and a discussion of how participant observation research should be operationalized in order to comply with these norms.

Preferred place of death for children and young people with life-limiting and life-threatening conditions: a systematic review of the literature and recommendations for future inquiry and policy

Background: Home is often cited as preferred place of death in the United Kingdom and elsewhere. This position, however, usually relies on data concerning adults and not evidence about children. The latter data are scant, primarily retrospective and from parents. Aim: To review the literature on preference for place of death for children and young people with life-limiting or life-threatening illnesses. Design and data sources: The databases MEDLINE, CINAHL and EMBASE were searched from 2004 to 2012, as well as bibliography, key author and grey literature searches. Policy documents, empirical, theoretical and peer-reviewed studies and conference abstracts were included. Articles were assessed for study quality. Results: Nine studies were included from five countries. Six reported a majority of parents (only one study interviewed adolescents) expressing preference for death at home. Other studies differed significantly in their findings; one reporting 35.1% and another 0% preferring death at home. Some parents did not express a preference. Six of the studies included only parents of children who died from cancer while being treated at tertiary centres that offered palliative care services. Such results cannot be generalised to the population of all life-limiting and life-threatening illnesses. Furthermore, the methods of the studies reviewed failed to accommodate the full range and dynamic character of preference. Conclusion: The evidence base for current policies that stress the need to increase home death rates for children and young people with life-limiting and life-threatening conditions is inadequate. Further rigorous research should collect data from parents, children and siblings.

I Want to Live, Until I don't Want to Live Anymore: Involving Children With Life-Threatening and Life-Shortening Illnesses in Decision Making About Care and Treatment

Pediatric societies in North America and in the United Kingdom and Europe take the position that children should be part of the decision-making process. Less clear, however, is how that should be accomplished. This article outlines what needs to be considered when taking on the challenge of involving children with life-threatening and life-limiting illnesses in decision making regarding care and treatment and suggests an approach to involving children that recognizes their abilities, vulnerabilities, and relationships with others while at the same time ensuring an ethical and meaningful role for children.

Worlds of dying children and their well siblings

Abstract This paper examines the place of illness and death in the lives of healthy children and their ill siblings at the end stages of life. The behaviors that the children exhibit provide important insights into the childrens views of their lives as well as their views of death.

Inviting parents to take part in paediatric palliative care research: A mixed-methods examination of selection bias:

Background: Recruitment to paediatric palliative care research is challenging, with high rates of non-invitation of eligible families by clinicians. The impact on sample characteristics is unknown. Aim: To investigate, using mixed methods, non-invitation of eligible families and ensuing selection bias in an interview study about parents’ experiences of advance care planning (ACP). Design: We examined differences between eligible families invited and not invited to participate by clinicians using (1) field notes of discussions with clinicians during the invitation phase and (2) anonymised information from the service’s clinical database. Setting: Families were eligible for the ACP study if their child was receiving care from a UK-based tertiary palliative care service (Group A; N = 519) or had died 6–10 months previously having received care from the service (Group B; N = 73). Results: Rates of non-invitation to the ACP study were high. A total of 28 (5.4%) Group A families and 21 (28.8%) Group B families (p < 0.0005) were invited. Family–clinician relationship appeared to be a key factor associated qualitatively with invitation in both groups. In Group A, out-of-hours contact with family was statistically associated with invitation (adjusted odds ratio 5.46 (95% confidence interval 2.13–14.00); p < 0.0005). Qualitative findings also indicated that clinicians’ perceptions of families’ wellbeing, circumstances, characteristics, engagement with clinicians and anticipated reaction to invitation influenced invitation. Conclusion: We found evidence of selective invitation practices that could bias research findings. Non-invitation and selection bias should be considered, assessed and reported in palliative care studies.

Underlying barriers to referral to paediatric palliative care services Knowledge and attitudes of health care professionals in a paediatric tertiary care centre in the United Kingdom

Referrals to children’s palliative care services typically occur late in the illness trajectory, with many children who would benefit not referred at all. Previous studies report health care professionals’ (HCPs) assessment of various parent-related factors as barriers to referral. We conducted a cross-sectional survey of HCPs working in a paediatric tertiary care hospital in the United Kingdom, with an established paediatric palliative care team, to explore staff perceptions of barriers, knowledge and attitudes, with the aim of developing interventions to increase patient access to palliative care services. Survey respondents evidenced good knowledge of the principles of palliative care in closed questions, but their attitudes expressed in open-text questions and reported reasons to refer to a palliative care service demonstrated an association of palliative care with death and dying. We suggest that the association of palliative care with end of life may be a modifiable factor relevant to late and non-referral and deserving of further investigation and attention in education and training.

Prognostic Disclosures to Children: A Historical Perspective.

Prognostic disclosure to children has perpetually challenged clinicians and parents. In this article, we review the historical literature on prognostic disclosure to children in the United States using cancer as an illness model. Before 1948, there was virtually no literature focused on prognostic disclosure to children. As articles began to be published in the 1950s and 1960s, many clinicians and researchers initially recommended a “protective” approach to disclosure, where children were shielded from the harms of bad news. We identified 4 main arguments in the literature at this time supporting this “protective” approach. By the late 1960s, however, a growing number of clinicians and researchers were recommending a more “open” approach, where children were included in discussions of diagnosis, which at the time was often synonymous with a terminal prognosis. Four different arguments in the literature were used at this time supporting this “open” approach. Then, by the late 1980s, the recommended approach to prognostic disclosure in pediatrics shifted largely from “never tell” to “always tell.” In recent years, however, there has been a growing appreciation for the complexity of prognostic disclosure in pediatrics. Current understanding of pediatric disclosure does not lead to simple “black-and-white” recommendations for disclosure practices. As with most difficult questions, we are left to balance competing factors on a case-by-case basis. We highlight 4 categories of current considerations related to prognostic disclosure in pediatrics, and we offer several approaches to prognostic disclosure for clinicians who care for these young patients and their families.

Withdrawal of ventilatory support outside the intensive care unit: guidance for practice

Objective To review the work of one tertiary paediatric palliative care service in facilitating planned withdrawal of ventilatory support outside the intensive care setting, with the purpose of developing local guidance for practice. Methods Retrospective 10-year (2003–2012) case note review of intensive care patients whose parents elected to withdraw ventilation in another setting. Demographic and clinical data revealed common themes and specific incidents relevant to local guideline development. Results 18 children (aged 2 weeks to 16 years) were considered. Three died prior to transfer. Transfer locations included home (5), hospice (8) and other (2). Primary pathologies included malignant, neurological, renal and respiratory diseases. Collaborative working was evidenced in the review including multidisciplinary team meetings with the palliative care team prior to discharge. Planning included development of symptom management plans and emergency care plans in the event of longer than anticipated survival. Transfer of children and management of extubations demonstrated the benefits of planning and recognition that unexpected events occur despite detailed planning. We identified the need for local written guidance supporting healthcare professionals planning and undertaking extubation outside the intensive care setting, addressing the following phases: (i) introduction of withdrawal, (ii) preparation pretransfer, (iii) extubation, (iv) care postextubation and (v) care postdeath. Conclusions Planned withdrawal of ventilatory support outside the intensive care setting is challenging and resource intensive. The development of local collaborations and guidance can enable parents of children dependent on intensive care to consider a preferred place of death for their child, which may be outside the intensive care unit.

The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review

Background: Researchers report difficulties in conducting research with children and young people with life-limiting conditions or life-threatening illnesses and their families. Recruitment is challenged by barriers including ethical, logistical and clinical considerations. Aim: To explore how children and young people (aged 0–25 years) with life-limiting conditions or life-threatening illnesses and their families were identified, invited and consented to research published in the last 5 years. Design: Systematic review. Data sources: MEDLINE, PsycINFO, Web of Science, Sciences Citation Index and SCOPUS were searched for original English language research published between 2009 and 2014, recruiting children and young people with life-limiting conditions or life-threatening illness and their families. Results: A total of 215 studies – 152 qualitative, 54 quantitative and 9 mixed methods – were included. Limited recruitment information but a range of strategies and difficulties were provided. The proportion of eligible participants from those screened could not be calculated in 80% of studies. Recruitment rates could not be calculated in 77%. A total of 31% of studies recruited less than 50% of eligible participants. Reasons given for non-invitation included missing clinical or contact data, or clinician judgements of participant unsuitability. Reasons for non-participation included lack of interest and participants’ perceptions of potential burdens. Conclusion: All stages of recruitment were under reported. Transparency in reporting of participant identification, invitation and consent is needed to enable researchers to understand research implications, bias risk and to whom results apply. Research is needed to explore why consenting participants decide to take part or not and their experiences of research recruitment.

‘I have to live with the decisions I make’: laying a foundation for decision making for children with life-limiting conditions and life-threatening illnesses

The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this article we lay out factors that bear on the success of clinical consultations and the maintenance of the essential clinician–parent relationship at progression or deterioration of LLCs or LTIs. We suggest an approach to engaging parents in conversations about care and treatment that recognises and appreciates the dilemmas which clinicians and parents face and in so doing provides a way for everyone to live with the decisions that are made. A close analysis of a consultation at progression and excerpts of encounters among parents, clinician and researcher are used to illustrate our approach to research, analysis and development of recommendations for clinical practice.