Outpatient appointment non-attendance and unplanned health care for children and young people with neurological conditions: a retrospective cohort study
Aim To test the hypothesis that children and young people with neurological conditions who missed outpatient appointments have more emergency inpatient admissions and Accident and Emergency centre (A&E) visits than those who missed none. Method Retrospective cohort of individuals aged up to 19 years with neurological conditions, identified from routine hospital data in England, UK from April 1st, 2003 to March 31st, 2015 using an International Statistical Classification of Diseases and Related Health Problems, coding framework. Counts of emergency inpatient admissions and A&E visits per person per year were modelled (random intercept negative binomial regression) with outpatient attendance the independent variable of interest. Results The cohort numbered 524 613 individuals. Those who missed outpatient appointments had 19 per cent (95% confidence interval [CI] 18–19) more emergency inpatient admissions and 16 per cent (95% CI 15–17) more A&E visits per year than those who missed none. ‘Did not attends’ had a larger increase in unplanned health care than patient or provider cancellations. If no appointments were missed, the models predict there would have been 107 000 fewer A&E visits from 2007/2008 to 2014/2015 and 104 000 fewer emergency inpatient admissions from 2003/2004 to 2014/2015. Interpretation Missed outpatient appointments were associated with increased unplanned health care. Improving outpatient attendance may have the potential to reduce emergency inpatient admissions and A&E visits. What this paper adds Missed outpatient appointments by children and young people with neurological conditions are associated with increased unplanned health care. Both emergency inpatient admissions and Accident and Emergency centre visits are increased. ‘Did not attends’ are more strongly associated with unplanned health care than cancellations.
Jarvis Stuart; Livingston J; Childs A-M; Fraser L
Developmental Medicine & Child Neurology
2018
<a href="http://doi.org/10.1111/dmcn.14070" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14070</a>
Partnering with families of children with medical complexity to evaluate interventions
KEY POINTS A key goal in health care is to improve outcomes that matter most to patients.[1][1] This is a poignant aim for a small but very important group: children with medical complexity and their caregivers. Children with medical complexity are defined by serious chronic conditions, functional
Fayed Nora; Gardecki M; Cohen E
CMAJ
2018
<a href="http://doi.org/10.1503/cmaj.180372" target="_blank" rel="noreferrer noopener">10.1503/cmaj.180372</a>
Development and pilot testing of a coping kit for parents of hospitalized children
Objective Serious pediatric illness places great stress on families. Parents who learn coping skills may better manage these stressors. This study sought to develop and refine a stress coping intervention for parents of hospitalized children, assess the intervention acceptability among these parents, and gather preliminary data on stress, negative and positive affect, anxiety, depression, and self-efficacy. Methods We conducted an observational study in 2 phases, enrolling parents of children who were inpatients with serious illness, 10 in Phase 1 and 40 in Phase 2. All parents completed at baseline measures of stress and psychological well-being and were introduced to the Coping Kit for Parents. Follow-up interviews were conducted at one week (all parents) and one month (Phase 2 parents only) regarding the acceptability of the intervention. Results At baseline, parents reported that stressful situations were frequent (mean=30.6, SD=6.8) and difficult (mean=26.2, SD=7.1), and revealed elevated levels of negative affect (mean=27.3, SD=7.7), depression (mean=8.5, SD=3.7) and anxiety (mean=11.3, SD=3.1), and moderate levels of self-efficacy related to their child's illness (mean=3.3, SD=0.5). The majority of parents used the kit regularly and on a scale of 1 to 7 agreed that the kit was helpful (mean=6.0, SD=0.9), interesting (mean=5.7, SD=1.3), practical (mean=5.7, SD=1.4), enjoyable (mean=6.0, SD=1.3), and they would recommend it to other parents (mean=6.4, SD=0.9). Conclusions The Coping Kit for Parents is an acceptable stress management intervention that could be made available to parents of children with serious illness at pediatric hospitals with minimal staff training or time commitment.
Hill Douglas L; Carroll KW; Snyder KJG; Mascarenhas M; Erlichman J; Patterson CA; Barakat Lamia P; Feudtner C
Academic Pediatrics
2018
<a href="http://doi.org/10.1016/j.acap.2018.11.001" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2018.11.001</a>
Care Maps and Care plans for Children with Medical Complexity
medical complexity; care maps; care plans
Abstract Introduction The support of families in the care of children with medical complexity (CMC) requires the integration of health care provider (HCP) medical knowledge and family experience. Care plans largely represent HCP information and care maps demonstrate the family experience. Understanding the intersection between a care plan and care map is critical, as it may provide solutions to the widely recognized tension between HCP-directed care and patient- and family-centered care (PFCC). Method This study used qualitative methods to explore the experience and usefulness of care maps. Parents of CMC who already had a care plan, created care maps (n=15). Subsequent interviews with parents (n=15) and HCPs (n=30) of CMC regarding both care maps and care plans were conducted and analyzed using thematic analysis. Results Data analysis exploring the relationship and utility of care plans and care maps revealed six primary themes related to using care plans and care maps that were grouped into two primary categories: 1) Utility of care plans and maps; and 2) Intersection of care plans and care maps. Discussion Care plans and care maps were identified as valuable complementary documents. Their integration offers context about family experience and respects the parents? experiential wisdom in a standard patient care document, thus promoting improved understanding and integration of the family experience into care decision making.
Adams S; Nicholas D; Mahant S; Weiser N; Kanani R; Boydell K; Cohen E
Child: Care, Health and Development
2018
<a href="http://doi.org/10.1111/cch.12632" target="_blank" rel="noreferrer noopener">10.1111/cch.12632</a>
Implementation of a Competency-Based, Interdisciplinary Pediatric Palliative Care Curriculum Using Content and Format Preferred by Pediatric Residents
pediatric palliative care; resident education; social cognitive theory
Palliative care competencies at the pediatric resident training level expand learned knowledge into behavior. The objective of this study was to investigate mode of palliative care education delivery preferred by pediatric residents and to report on participatory approach to resident palliative care curriculum design. A one-hour monthly palliative care curriculum was designed and implemented in a participatory manner with 20 pediatric residents at a free-standing Midwestern children's hospital. Outcome measures included pediatric residents' personal attitude and perceived training environment receptivity before and after implementation of a palliative care competency-based curriculum. An 18-item survey utilizing Social Cognitive Theory Constructs was administered at baseline and after palliative care curriculum implementation (2017(-)2018 curricular year). Pediatric residents prioritized real case discussions in group format (16/20) over other learning formats. Topics of highest interest at baseline were: discussing prognosis and delivering bad news (weighted average 12.9), pain control (12.3), goals of care to include code status (11.1), and integrative therapies (10.7). Summary of ordinal responses revealed improvement in self-assessment of personal attitude toward palliative care and training environment receptivity to palliative care domains after year-long curriculum implementation. Curricular approach which is attentive to pediatric residents' preferred learning format and self-assessment of their behaviors within their care setting environment may be beneficial in competency-based primary palliative training.
Weaver MS; Wichman C
Children
2018
<a href="http://doi.org/10.3390/children5120156" target="_blank" rel="noreferrer noopener">10.3390/children5120156</a>
Influence of Palliative Care on Medical Treatment of Pediatric Patients with Complex Chronic Diseases at Cook Children's Medical Center
Data Analysis Software; Human; Electronic Health Records; Length of Stay; Child; Hospitalization; Patient Care; Texas; Descriptive Statistics; Chi Square Test; Chronic Disease -- Therapy -- In Infancy and Childhood; Drug Administration; Hospitals Pediatric -- Texas; Medical Orders; Palliative Care -- Utilization; Wilcoxon Rank Sum Test
Background: Literature in adult palliative care (PC) boasts fewer invasive procedures, shorter lengths of stay, and decreased cost of care. Benefits of pediatric PC are under-researched and are important to identify to optimize care. Objective: Our aim was to estimate the influence and utilization of PC on pediatric patient care. Design: We evaluated the electronic medical record of 43 patients at Cook Children's Medical Center (CCMC) with complex chronic conditions, who died between January 1, 2013, and December 31, 2014, comparing the length and frequency of hospitalizations, number of medications administered and procedures performed, and established limits of resuscitation between patients who received PC and those who did not. Measurements: Data analyses were performed using SAS Enterprise (version 6.1; SAS Institute, Inc., Cary, NC). Continuous variables were described as medians and ranges and analyzed with Wilcoxon rank-sum test for ordinal data. Categorical variables were described as percentages and analyzed with chi-square test of independence. Repeated-measures analyses were performed utilizing multilevel linear modeling, which examined the data at the level of the 236 visits rather than the 43 patients. Results: Twelve (28%) eligible patients were seen by PC. PC patients had more hospitalizations, longer lengths of stay, and fewer medications and procedures than those patients without PC services. PC patients were also more likely to have a medical orders for scope of treatment in place. Conclusion: These data demonstrate that PC services at CCMC are underutilized and support the need for PC services by decreased medications and procedures and identified family wishes for medical treatment.
Seddighzadeh RP; Lawrence K; Hamby T; Hoeft A
Journal of Palliative Medicine
2018
<a href="http://doi.org/10.1089/jpm.2018.0079" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0079</a>
Documentation of breakthrough pain in narrative clinical records of children with life-limiting conditions: Feasibility of a retrospective review
life-limiting conditions; child; Breakthrough pain; data collection/instrumentation; retrospective review
This study explored the feasibility of generating reliable information on the frequency, nature and management of breakthrough pain (BTP) in children with life-limiting conditions and life-threatening illnesses (LTIs) from narrative clinical records. In the absence of standardized ways for documenting BTP, we conducted a consensus exercise to develop a glossary of terms that could denote BTP in the records. Thirteen clinicians who contributed to the records reached consensus on 45 terms which could denote BTP, while emphasizing the importance of contextual information. The results of this approach together with guidance for improving the reliability of retrospective reviews informed a data extraction instrument. A pilot test of this instrument showed poor agreement between raters. Given the challenges encountered, we do not recommend a retrospective review of BTP using narrative records. This study highlighted challenges of data extraction for complex symptoms such as BTP from narrative clinical records. For both clinical and research purposes, the recording of complex symptoms such as BTP would benefit from clear criteria for applying definitions, a more structured format and the inclusion of validated assessment tools. This study also showed the value of consensus exercises in improving understanding and interpretation of clinical notes within a service.
Oostendorp LJ; Rajapakse D; Kelly P; Crocker J; Dinsdale A; Fraser L; Bluebond-Langner M
Journal of Child Health Care
2018
<a href="http://doi.org/10.1177/1367493518807312" target="_blank" rel="noreferrer noopener">10.1177/1367493518807312</a>
Impaired mobility associated with an increased likelihood of death in children: A systematic review
Embase; palliative therapy; risk factor; systematic review; human; article; child; female; male; Medline; death; high income country; child health; Gross Motor Function Classification System; immobility; Cochrane Library; handicapped child; SciSearch
Improved identification of children with an increased likelihood of death can support appropriate provision of integrated palliative care. This systematic review aims to consider immobility and the associated likelihood of death in children with disabilities, living in high-income countries. Two reviewers independently searched MEDLINE, Embase, Cochrane Library, OpenGrey and Science Citation Index (1990-2016) for studies that reported hazard ratios (HRs) and relative risk for the likelihood of death related to impaired mobility. Nine papers were included. Three studies reported functioning using the Gross Motor Function Classification Scale (GMFCS) and the remaining studies reported measures of functioning unique to the study. The strongest single prognostic factor for the likelihood of death was 'lack of sitting ability at 24 months', HR 44.4 (confidence interval (CI) 6.1-320.8) followed by GMFCS V HR 16.3 (CI 5.6-47.2) and 11.4 (CI 3.76-35.57) and 'not able to cruise by 24 months', HR 14.4 (CI 3.5-59.2). Immobility is associated with an increased risk of dying over study periods, but different referent groups make clinical interpretation challenging. Overall, the quality of evidence is moderate. The findings suggest that immobility can support identification of children who may benefit from integrated palliative care.
Nissen S; Purssell E; Shaw K; Bailey C; Efstathiou N; Dunford C
Journal of child health care : for professionals working with children in the hospital and community
2018
<a href="http://doi.org/10.1177/1367493517732839" target="_blank" rel="noreferrer noopener">10.1177/1367493517732839</a>
Palliative care in a tertiary neonatal intensive care unit: a 10-year review
palliation; neonatal; end-of-life; palliative; neonatology; integrative
OBJECTIVES: When active treatment is no longer in the best interests of the patient, redirection of care to palliation is an important transition. We review, within a tertiary neonatal intensive care unit (NICU), the journey leading to the decision to redirect care, the means of symptom control and the provision of psychosocial supports. METHODS: A retrospective review of all 166 deaths of NICU-affiliated patients during a 10- year epoch. Medical notes were reviewed, and the provision and type of, or barriers to, effective palliative care was defined. RESULTS: Extreme prematurity accounted for 71/145 (49%) of deaths with relatively high proportions of Maori 17/71 (25%) and Pacific Islanders 9/71 (13%). Almost all eligible infants received some form of palliation. Transition from curative to palliative care was refused by the family in a single case. Median time from decision to redirect care until first recorded action was 80 min, and median time from action until death was 60 min. The majority of infants received some form of comfort cares, (128/166) most commonly morphine (94/128, 73%). Three infants had documented seizure activity or respiratory distress but did not receive any pharmacological intervention. Psychosocial supports were offered in 98/145 (67%) of cases, but only 71/145 (49%) of families were formally offered an opportunity to discuss the infant's clinical course after their death. CONCLUSIONS: Clinical documentation of care plans was often incomplete, potentially leading to inconsistent delivery of care, increased risk of symptom breakthrough and/or inadequate psychosocial supports for family. Formal individualised palliative care plans are under development to standardise documentation and improve therapeutic and psychosocial interventions available to the infant and their family.
Ng SKF; Keenan N; Swart S; Berry MJ
BMJ Supportive & Palliative
2018
<a href="http://doi.org/10.1136/bmjspcare-2018-001538" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001538</a>
Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes
Embase; PsycINFO; outcome assessment; health care personnel; Scopus; systematic review; precancer; human; article; child; female; male; palliative therapy; Cinahl; Medline; developing country; high income country; ScienceDirect
Background: The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes. Objective: This review aims to identify symptoms, concerns and outcomes that matter to children and young people ("young people") with terminal illnesses and their families. Findings from the systematic review will inform the development of a relevant framework of health outcomes. Method: This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources included PsycINFO, MEDLINE, Embase, CINAHL, OpenGrey, and Science Direct Journals, searched from 1 August 2016 to 30 July 2017. The study also incorporates consultations with experts in the field, citation searches via Scopus, and a hand search of reference lists of included studies. Results: Of the 13,567 articles that were evaluated, 81 studies were included. Most of these studies (n = 68) were from high-income countries and foused on young people with cancer (n = 58). A total of 3236 young people, 2103 family carers, 108 families, and 901 healthcare providers were included in the studies. Young people did not contribute to data in 30% of studies. Themes on priority concerns are presented by the following domains and health outcomes: (1) physical (n = 62 studies), e.g., physical symptoms; (2) psychological (n = 65), e.g., worry; (3) psychosocial (n = 31), e.g., relationships; (4) existential (n = 37), e.g., existential loss; and (5) "other" (n = 39), e.g., information access. Conclusion: Burdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory; pediatric palliative care should not be limited to the end-of-life phase. A child-family-centered framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future research should address gaps identified across the literature (i.e., the involvement of young people in research, evidence for developing countries, and a focus on nonmalignant conditions.
Namisango E; Bristowe K; Allsop MJ; Murtagh FEM; Abas M; Higginson IJ; Downing J; Harding R
Patient
2018
<a href="http://doi.org/10.1007/s40271-018-0333-5" target="_blank" rel="noreferrer noopener">10.1007/s40271-018-0333-5</a>
Provider Tools for Advance Care Planning and Goals of Care Discussions: A Systematic Review
advance care planning; Age Factors; Physician-Patient Relations; Communication; Advance Care Planning/standards; Humans; Pediatrics; palliative care; decision-making; systematic review; serious illness; Practice Guidelines as Topic; Geriatrics; goals of care discussions; Patient Care Planning/standards; point-of-care clinical tools
BACKGROUND: Advance care planning and goals of care discussions involve the exploration of what is most important to a person, including their values and beliefs in preparation for health-care decision-making. Advance care planning conversations focus on planning for future health care, ensuring that an incapable person's wishes are known and can guide the person's substitute decision maker for future decision-making. Goals of care discussions focus on preparing for current decision-making by ensuring the person's goals guide this process. AIM: To provide evidence regarding tools and/or practices available for use by health-care providers to effectively facilitate advance care planning conversations and/or goals of care discussions. DATA SOURCES: A systematic review was conducted focusing on guidelines, randomized trials, comparative studies, and noncomparative studies. Databases searched included MEDLINE, EMBASE, and the proceedings of the International Advance Care Planning Conference and the American Society of Clinical Oncology Palliative Care Symposium. CONCLUSIONS: Although several studies report positive findings, there is a lack of consistent patient outcome evidence to support any one clinical tool for use in advance care planning or goals of care discussions. Effective advance care planning conversations at both the population and the individual level require provider education and communication skill development, standardized and accessible documentation, quality improvement initiatives, and system-wide coordination to impact the population level. There is a need for research focused on goals of care discussions, to clarify the purpose and expected outcomes of these discussions, and to clearly differentiate goals of care from advance care planning.
Myers J; Cosby R; Gzik D; Harle I; Harrold D; Incardona N; Walton T
American Journal of Hospice and Palliatice Care
2018
<a href="http://doi.org/10.1177/1049909118760303" target="_blank" rel="noreferrer noopener">10.1177/1049909118760303</a>
Pre-loss personal factors and prolonged grief disorder in bereaved mothers
Bereavement; sudden infant death syndrome; maternal; prolonged grief disorder; prospective; risk factors
BACKGROUND: Identifying characteristics of individuals at greatest risk for prolonged grief disorder (PGD) can improve its detection and elucidate the etiology of the disorder. The Safe Passage Study, a study of women at high risk for sudden infant death syndrome (SIDS), prospectively examined the psychosocial functioning of women while monitoring their healthy pregnancies. Mothers whose infants died of SIDS were followed in bereavement. METHODS: Pre-loss data were collected from 12 000 pregnant mothers and analyzed for their associations with grief symptoms and PGD in 50 mothers whose infants died from SIDS, from 2 to 48 months after their infant's death, focusing on pre-loss risk factors of anxiety, depression, alcohol use, maternal age, the presence of other living children in the home, and previous child loss. RESULTS: The presence of any four risk factors significantly predicted PGD for 24 months post-loss (p < 0.003); 2-3 risk factors predicted PGD for 12 months (p = 0.02). PGD rates increased in the second post-loss year, converging in all groups to approximately 40% by 3 years. Pre-loss depressive symptoms were significantly associated with PGD. Higher alcohol intake and older maternal age were consistently positively associated with PGD. Predicted risk scores showed good discrimination between PGD and no PGD 6-24 months after loss (C-statistic = 0.83). CONCLUSIONS: A combination of personal risk factors predicted PGD in 2 years of bereavement. There is a convergence of risk groups to high rates at 2-3 years, marked by increased PGD rates in mothers at low risk. The risk factors showed different effects on PGD.
Goldstein RD; Petty CR; Morris SE; Human M; Odendaal H; Elliott A; Tobacco D; Angal J; Brink L; Kinney HC; Prigerson HG
Psychological Medicine
2018
<a href="http://doi.org/10.1017/s0033291718003264" target="_blank" rel="noreferrer noopener">10.1017/s0033291718003264</a>
Medical assistance in dying: A paediatric perspective
infant; Canada; newborn; law; life; responsibility; medical care; euthanasia; health care quality; pediatrician; pediatrics; human; article; child; consultation; juvenile; protein unfolding
The Supreme Court decision in Carter v. Canada (2015) has led to changes to the Canadian Criminal Code, such that physician-assisted death is now a legal option for consenting adult patients who have a 'grievous and irremediable medical condition' that causes 'enduring' and 'intolerable' suffering. In June 2016, Bill C-14 was enacted, allowing medical assistance in dying (MAID) for an eligible adult whose death is 'reasonably foreseeable'. An independent report on the status of 'mature minors' (who are currently excluded under federal legislation), with focus on their potential eligibility for MAID, was required by the 2016 Act and is expected to be presented to Parliament by December 2018. Ensuring that newborns, children and youth receive the highest possible standard of care as they are dying is a privilege and a responsibility for physicians and allied professionals. Bringing a thoughtful, respectful and personal approach to every end-of-life situation is an essential and evolving duty of care, and the process should meet each patient's (and family's) unique social, cultural and spiritual needs. This statement describes the current Canadian legal and medical context of MAID and articulates a paediatric perspective that has emerged from - and been informed by - the broad, structured consultation process unfolding in Canada and elsewhere. Although 'mature minors' are the only youth currently mandated for further legislative consideration in Canada, the need to examine requests for and attitudes around MAID for minors of all ages remains compelling for two main reasons: . Canadian health care professionals are increasingly being approached by the parents of 'never-competent' infants and children, including those too young to make a reasoned decision, and by youth themselves, to discuss MAID-related issues. Results from a Canadian Paediatric Surveillance Program (CPSP) survey, discussed below, indicate that parents raise such questions with paediatricians more often than do minors. . The discussion of MAID policy in Canada has been framed as much by the issue and context of suffering as by considerations of autonomy. While current legislation clearly prohibits MAID for incapable persons at the request of any other person, it is possible that parents may request MAID on behalf of their dying child.
Davies D
Paediatrics & Child Health
2018
<a href="http://doi.org/10.1093/pch/pxx181" target="_blank" rel="noreferrer noopener">10.1093/pch/pxx181</a>
Bereaved parents' experiences of research participation
pediatric intensive care unit; content analysis; grounded theory; scientist; follow up; human; article; child; female; male; interview; bereavement; death; spouse
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.
Butler AE; Hall H; Copnell B
BMC palliative care
2018
<a href="http://doi.org/10.1186/s12904-018-0375-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0375-4</a>
Improving neonatal care with the help of veteran resource parents: An overview of current practices
Infant Newborn; Humans; Parents; Intensive Care Units Neonatal; Neonatology; Family-centered care; Neonatal intensive care unit; Patient-centered research; Peer-to-peer support; Resource parents; Intensive Care Neonatal/standards; Neonatology/standards; Quality of Health Care/standards
Over the past decade, veteran parents who have lived a neonatal intensive care unit (NICU) experience have become increasingly involved as 'resource parents' to provide peer-to-peer support to "new" NICU parents. These parents can provide a unique form of support to new parents. They can also assume other roles in clinical care, research, administration and/or teaching, but those roles are rarely described in the literature. This article reviews many of the activities performed by resource parents in neonatology. These activities were identified/examined and classified according to the location of involvement (hospital or not), the presence/absence of direct interaction with families and providers, and the topic of involvement. We have also identified gaps in knowledge relative to recruitment and training, development and evaluation of programs, structuring of responsibilities, and remuneration of resource parents. Future research is needed to measure the impact of resource parents on neonatal care.
Bourque CJ; Dahan S; Mantha G; Robson K; Reichherzer M; Janvier A
Seminars in Fetal and Neonatal Medicine
2018
<a href="http://doi.org/10.1016/j.siny.2017.10.005" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2017.10.005</a>
Research prioritisation exercises related to the care of children and young people with life-limiting conditions, their parents and all those who care for them: A systematic scoping review
infant; palliative care; adolescent; newborn; Delphi technique; child; humans; consensus
BACKGROUND:: In planning high-quality research in any aspect of care for children and young people with life-limiting conditions, it is important to prioritise resources in the most appropriate areas. AIM:: To map research priorities identified from existing research prioritisation exercises relevant to infants, children and young people with life-limiting conditions, in order to inform future research. DESIGN:: We undertook a systematic scoping review to identify existing research prioritisation exercises; the protocol is publicly available on the project website. DATA SOURCES:: The bibliographic databases ASSIA, CINAHL, MEDLINE/MEDLINE In Process and Embase were searched from 2000. Relevant reference lists and websites were hand searched. Included were any consultations aimed at identifying research for the benefit of neonates, infants, children and/or young people (birth to age 25 years) with life-limiting, life-threatening or life-shortening conditions; their family, parents, carers; and/or the professional staff caring for them. RESULTS:: A total of 24 research prioritisation exercises met the inclusion criteria, from which 279 research questions or priority areas for health research were identified. The priorities were iteratively mapped onto an evolving framework, informed by World Health Organization classifications. This resulted in identification of 16 topic areas, 55 sub-topics and 12 sub-sub-topics. CONCLUSION:: There are numerous similar and overlapping research prioritisation exercises related to children and young people with life-limiting conditions. By mapping existing research priorities in the context in which they were set, we highlight areas to focus research efforts on. Further priority setting is not required at this time unless devoted to ascertaining families' perspectives.
Booth A; Maddison J; Wright K; Fraser L; Beresford B
Palliative Medicine
2018
<a href="http://doi.org/10.1177/0269216318800172" target="_blank" rel="noreferrer noopener">10.1177/0269216318800172</a>
Comparing Health Care Provider-Perceived Barriers to Pediatric Palliative Care Fifteen Years Ago and Today
pediatric palliative care; pediatric end-of-life care; barriers; uncertain prognosis
OBJECTIVE: This study examines health care provider perspectives about barriers to pediatric palliative care for seriously ill children 15 years after an initial study within the same academic health system. METHODS: Anonymous validated surveys were sent electronically to inpatient nursing unit distribution lists (n = 1315). Reminders were sent through e-mail twice over a two-month data collection period. RESULTS: Response rate was 20.9% (275/1315) with 45.2% of responses from critical care units and 21.6% from hematology/oncology units. Of the participants, 58.2% (n = 160) had >/=10 years nursing experience, 58.5% (n = 161) had one to five patients die in the past 12 months, and 50.2% (n = 138) had one to five patients receiving subspecialty pediatric palliative care in the past year. Approximately one-half of the participants reported 3 of 26 barriers listed on the study survey as frequently or almost always occurring, including (1) family preference for more life-sustaining treatment than staff (n = 177, 64.8%), (2) family not ready to acknowledge incurable condition (n = 175, 64.1%), and (3) parent discomfort with possibility of hastening death (n = 146, 53.7%). Study findings were similar between 2002 and 2017, particularly in the extremes of the most and least commonly cited barriers. CONCLUSIONS: Barriers to palliative care for hospitalized children persist and commonly include perceptions that families deny, prefer, or have discomfort with forgoing life-sustaining treatments. Increasingly, studies have shown that families can be simultaneously hopeful and aware of their child's worsening health. Further palliative care education and research about these barriers and their impacts are necessary to support seriously ill children and their families.
Bogetz JF; Root M C; Purser L; Torkildson C
Journal of Palliative Medicine
2018
<a href="http://doi.org/10.1089/jpm.2018.0367" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0367</a>
Health professionals' experiences of grief associated with the death of pediatric patients: a qualitative systematic review protocol
REVIEW QUESTION: What are health professionals' experiences of grief associated with the death of pediatric patients in acute or community healthcare settings?
Barnes S; Jordan Z; Broom M
JBI Database of Systematic Reviews and Implementation Reports
2018
<a href="http://doi.org/10.11124/jbisrir-2017-003857" target="_blank" rel="noreferrer noopener">10.11124/jbisrir-2017-003857</a>