Consulting with a folk deity before making decisions: spiritual practices in parents facing end-of-life decisions for their child on life support with brain stem dysfunction.
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SUBMITTER: Lin SC
PROVIDER: S-EPMC7241511 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundWritten resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical issues. The Caring Decisions handbook and website were developed to fill these gaps.AimWe discuss the development of the resources, modification after reviewer feedback and findings from initial pilot implementation.DesignA targeted literature review-to identify resources and factors that impact on parental EoL decision-making; development phase-guided by the literature and the researchers' expertise; consultation process-comprised a multi-disciplinary panel of experts and parents; pilot evaluation study-hard-copy handbook was distributed as part of routine care at an Australian Children's Hospital.Setting/participantsTwelve experts and parents formed the consultation panel. Eight parents of children with life-limiting conditions and clinicians were interviewed in the pilot study.ResultsNumerous factors supporting/impeding EoL decisions were identified. Caring Decisions addressed issues identified in the literature and by the multidisciplinary research team. The consultation panel provided overwhelmingly positive feedback. Pilot study parents found the resources helpful and comforting. Most clinicians viewed the resources as very beneficial to parents and identified them as ideal for training purposes.ConclusionsThe development of the resources addressed many of the gaps in existing resources. The consultation process and the pilot study suggest these resources could be of significant benefit to parents and clinicians.
| S-EPMC4638203 | biostudies-literature
Project description:BackgroundDespite health policy that promotes shared decision-making, it is not yet the norm in clinical practice. We aimed to assess how much shared decision-making Canadians experienced in health-related decisions in 2017.MethodsWe conducted a cross-sectional online survey in January 2018 with a Web-based panel of Canadians representing all 10 provinces. We assessed their involvement in health-related decisions made with a health care professional over the previous year by asking about 1) discussion of choice of treatment or care plan, 2) presentation of advantages and disadvantages, 3) exploration of ideas and preferences, 4) discussion of preferred option and 5) match between preferred and actual level of participation. We computed an average shared decision-making score (range 1 [never] to 5 [always]). We presented characteristics of participants and responses using descriptive statistics and explored variations across sociodemographic factors, jurisdictions, geographical areas and care settings (home care or not) using multivariate weighted regressions.ResultsOf the 1591 participants surveyed, 1010 (63.5%) reported receiving health care in the previous 12 months. The mean of the average shared decision-making score was 2.25/5 (standard deviation [SD] 1.16). After weighting, 42.8% of respondents reported that their health care professional often or always mentioned that they had a choice of treatment or care plan, 45.4% reported that advantages and disadvantages were often or always presented, 38.8% reported that they were often or always asked for their ideas or preferences, 40.2% reported that they were often or always asked about their preferred option, and 54.1% stated that their level of participation in decision-making often or always matched their preferred level of participation. Increasing age, rural setting, living in the province of Quebec and not being white significantly decreased the level of shared decision-making experienced. Older respondents (age ≥ 65 yr) receiving home care reported the least shared decision-making (mean score 1.7 [SD 0.5]).InterpretationCanadians in all 10 provinces experienced a low degree of shared decision-making in 2017, with variations across sociodemographic factors, jurisdictions, care settings and geographical areas. Further efforts to foster implementation of shared decision-making are needed and should take these variations into account.
| S-EPMC6450794 | biostudies-literature
Project description:To identify the decision support needs of parents attempting to make an informed health decision on behalf of a child.The first step towards implementing patient decision support is to assess patients' information and decision-making needs.A systematic search of key bibliographic databases for decision support studies was performed in 2005. Reference lists of relevant review articles and key authors were searched. Three relevant journals were hand searched.Non-intervention studies containing data on decision support needs of parents making child health decisions.Data were extracted on study characteristics, decision focus and decision support needs. Studies were quality assessed using a pre-defined set of criteria. Data synthesis used the UK Evidence for Policy and Practice Information and Co-ordinating Centre approach.One-hundred and forty nine studies were included across various child health decisions, settings and study designs. Thematic analysis of decision support needs indicated three key issues: (i) information (including suggestions about the content, delivery, source, timing); (ii) talking to others (including concerns about pressure from others); and (iii) feeling a sense of control over the process that could be influenced by emotionally charged decisions, the consultation process, and structural or service barriers. These were consistent across decision type, study design and whether or not the study focused on informed decision making.
| S-EPMC5060453 | biostudies-literature
Project description:To compare factors considered by parents to those considered by adolescents making decisions about chronic disease treatments.We conducted individual interviews with 15 parent-adolescent dyads in which the adolescent had either juvenile idiopathic arthritis or Crohn's disease. Questions focused on treatment decisions, with an emphasis on the factors that influenced each individual's preferences related to biologic therapies. A multidisciplinary team developed a coding structure. All interviews were coded by two people with disagreements resolved through discussion. We used content analysis and coding matrices to examine decision factors within and between parent-adolescent dyads.Parents and adolescents both participated in decisions about treatment with biologic therapies but considered decision factors differently. In only half of cases did parents and adolescents agree on the factor that most influenced their decision. Although their decision factors often fell into similar categories (e.g. treatment risks, quality of life), in many cases the specifics varied between adolescents and their parents. Adolescents were more likely to focus on immediate treatment effects and quality of life while parents took a longer term view of the decision. Agreement within dyads was most consistent when a special circumstance influenced the treatment decision.Differences regarding influential decision factors exist within parent-adolescent dyads. Continued research is needed to determine the extent to which such differences are due to individual preferences or to variations in the information available to each person. Future decision support interventions will need to address parents' and adolescents' potentially disparate views and information needs.
| S-EPMC5055230 | biostudies-literature
Project description:Importance:Patients with serious illnesses are often encouraged to actively deliberate about the desirability of life support. Yet it is unknown whether deliberation changes the substance or quality of such decisions. Objective:To identify differences in decisions about life support interventions and goals of care made intuitively vs deliberatively by patients with serious illnesses. Design, Setting, and Participants:Randomized clinical trial in which patients were asked to express treatment preferences in a series of clinical scenarios. Participants were 199 hospitalized patients aged 60 years and older with serious oncologic, cardiac, and pulmonary illnesses treated in a large, urban academic hospital from July 1, 2015, through March 15, 2016. Interventions:Patients in the intuitive group were subjected to a cognitive load and instructed to answer each question immediately based on gut instinct. Patients in the deliberative group were not cognitively loaded, were instructed to think carefully about their answers, and were required to explain their answers. Main Outcomes and Measures:Choices regarding life support (4 scenarios) and goals of care (1 scenario), concordance of these choices with patients' valuations of health states that could follow from them, and decisional uncertainty. Results:Of 199 patients, 132 (66%) were male and the mean (SD) age was 67.2 (5.0) years. Similar proportions of patients in the intuitive group (n = 97) and the deliberative group (n = 102) said they would accept a feeding tube for chronic aspiration (42% vs 44%, respectively; difference, -2%; 95% CI, -16% to 12%; P = .79), antibiotics for life-threatening infection in the event of terminal illness (39% vs 43%, respectively; difference, -4%; 95% CI, -18% to 10%; P = .57), a trial of mechanical ventilation (59% vs 60%, respectively; difference,-1%; 95% CI, -15% to 13%; P = .88), and a tracheostomy tube (37% vs 41%, respectively; difference, -4%; 95% CI, -22% to 13%; P = .64). Patients in the deliberative group were slightly more likely than patients in the intuitive group to choose a palliative approach to treatment in the event of serious illness (45% vs 30%, respectively; difference, 15%; 95% CI, 1%-29%; P = .04). Across scenarios, decisional uncertainty was similar between the 2 groups (all P > .05), and intuitive decisions were either equally or more closely aligned with patients' health state valuations than deliberative decisions. Conclusions and Relevance:In this study, encouraging hospitalized patients with serious illnesses to deliberate on end-of-life decisions did not change the content or improve the quality of these decisions. It is important to evaluate whether decision aids and structured communication interventions improve seriously ill patients' choices. Trial Registration:ClinicalTrials.gov Identifier: NCT02487810.
| S-EPMC6484534 | biostudies-literature
Project description:BACKGROUND:Shared decision making (SDM) is recognized as a person-centered approach to improving health care quality and outcomes. Few digital interventions to improve SDM have been tested in child and adolescent mental health (CAMH) settings. One such intervention is Power Up, a mobile phone app for young people (YP), which has shown some evidence of promise that YP who received Power Up reported greater levels of SDM. However, even though parents play a critical role in CAMH care and treatment, they often feel excluded from services. OBJECTIVE:This protocol is for a pilot trial to determine the feasibility of a large-scale randomized trial to develop and evaluate a Web app called Power Up for Parents (PUfP) to support parents and promote involvement in CAMH decisions. METHODS:A 2-stage process, consisting of the development stage and pilot-testing stage of the initial PUfP prototype, will be conducted. At the development stage, a qualitative study with parents and clinicians will be conducted. The interviews will aim to capture the experience of making CAMH decisions, preferences for involvement in SDM, and determine situations within which PUfP can be useful. At the pilot-testing stage, up to 90 parents and their clinicians will be invited to participate in the testing of the prototype. Parents will be randomly allocated to receive the intervention or be part of the control group. This study design will allow us to assess the acceptability and usefulness of PUfP in addition to examining the feasibility of a prospective randomized trial. Clinicians' perceptions of the prototype and how it has influenced parents' involvement in SDM will also be examined. RESULTS:Recruitment began in January 2019 and is scheduled to last for 10 months. Interviews and baseline data collection are currently in progress. To date, 11 CAMH sites have been recruited to take part in the study. It is anticipated that data collection will be completed by October 2019. CONCLUSIONS:The lack of parents' involvement in CAMH care and treatment can lead to higher rates of dropout from care and lower adherence to therapeutic interventions. There are significant benefits to be gained globally if digital SDM interventions are adopted by parents and shown to be successful in CAMH settings. TRIAL REGISTRATION:ISRCTN Registry ISRCTN39238984; http://www.isrctn.com/ISRCTN39238984. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):DERR1-10.2196/14571.
| S-EPMC6712959 | biostudies-literature
Project description: Not available
| S-EPMC6478132 | biostudies-literature
Project description:OBJECTIVE:To conduct a systematic review of randomised trials of patient decision aids in improving decision making and outcomes. DESIGN:We included randomised trials of interventions providing structured, detailed, and specific information on treatment or screening options and outcomes to aid decision making. Two reviewers independently screened and extracted data on several evaluation criteria. Results were pooled by using weighted mean differences and relative risks. RESULTS:17 studies met the inclusion criteria. Compared with the controls, decision aids produced higher knowledge scores (weighted mean difference=19/100, 95% confidence interval 14 to 25); lower decisional conflict scores (weighted mean difference=-0.3/5, -0.4 to -0.1); more active patient participation in decision making (relative risk = 2.27, 95% confidence interval 1. 3 to 4); and no differences in anxiety, satisfaction with decisions (weighted mean difference=0.6/100, -3 to 4), or satisfaction with the decision making process (2/100,-3 to 7). Decision aids had a variable effect on decisions. When complex decision aids were compared with simpler versions, they were better at reducing decisional conflict, improved knowledge marginally, but did not affect satisfaction. CONCLUSIONS:Decision aids improve knowledge, reduce decisional conflict, and stimulate patients to be more active in decision making without increasing their anxiety. Decision aids have little effect on satisfaction and a variable effect on decisions. The effects on outcomes of decisions (persistence with choice, quality of life) remain uncertain.
| S-EPMC28223 | biostudies-literature
Project description:BACKGROUND:Very preterm birth (24 to <?32 week's gestation) is a major public health issue due to its prevalence, the clinical and ethical questions it raises and the associated costs. It raises two major clinical and ethical dilemma: (i) during the perinatal period, whether or not to actively manage a baby born very prematurely and (ii) during the postnatal period, whether or not to continue a curative treatment plan initiated at birth. The Wallonia-Brussels Federation in Belgium counts 11 neonatal intensive care units. METHODS:An inventory of key practices was compiled on the basis of an online questionnaire that was sent to the 65 neonatologists working in these units. The questionnaire investigated care-related decisions and practices during the antenatal, perinatal and postnatal periods, as well as personal opinions on the possibility of standardising and/or legislating for end-of-life decisions and practices. The participation rate was 89% (n?=?58). RESULTS:The results show a high level of homogeneity pointing to overall agreement on the main principles governing curative practice and the gestational age that can be actively managed given the current state of knowledge. There was, however, greater diversity regarding principles governing the transition to end-of-life care, as well as opinions about the need for a common protocol or law to govern such practices. CONCLUSION:Our results reflect the uncertainty inherent in the complex and diverse situations that are encountered in this extreme area of clinical practice, and call for qualitative research and expert debates to further document and make recommendations for best practices regarding several "gray zones" of end-of-life care in neonatology, so that high quality palliative care may be granted to all neonates concerned with end-of-life decisions.
| S-EPMC6020374 | biostudies-literature
Project description:Spiritual struggle (SS) is associated with poorer health outcomes including depression. The study's main objectives were to characterize change in depression over time, examine longitudinal associations between SS and depression, and determine the extent to which experiencing SS at baseline was predictive of developing depression at follow-up.A two-site study collected questionnaire responses of parents (N = 112; 72% female) of children with cystic fibrosis followed longitudinally. Generalized linear mixed effects modeling examined the association between depression and SS over time and assessed potential mediators, moderators, and confounders.Prevalence of depression increased from baseline to follow-up (OR: 3.6, P < 0.0001), regardless of degree of SS. Parents with Moderate/Severe SS were more likely to have depressive symptoms, compared to parents without SS (OR: 15.2, P = 0.0003) and parents who had Mild SS (OR: 10.2, P = 0.0001). Being female and feeling less "at peace" also significantly predicted increased depression (OR: 2.5, P = 0.0397, and OR: 1.15, P = 0.0419, resp.). Experiencing SS at baseline was not predictive of having depression subsequently at follow-up.Parents experiencing SS were significantly more likely to report depressive symptoms. Interventions to reduce SS have shown efficacy and may be considered.
| S-EPMC5555001 | biostudies-other