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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.

ABSTRACT: Background: Adolescents with brain stem dysfunction may undergo many invasive treatments, and parents are often faced with making the decision to withdraw treatment. However, in the face of their child's death, the spiritual practices of parents dealing with end-of-life decision-making remain under investigated.Purpose: This study explores the spiritual practices in parents making end-of-life decisions for adolescents on life support with brain stem dysfunction.Method: A descriptive phenomenological study was conducted through in-depth interviews with three parents of two adolescents in Taiwan. Data were analysed using Colaizzi's seven-step protocol.Results: Three main themes emerged: (1) faith during decision-making, (2) struggles during decision-making, (3) transformation during decision-making. The findings indicate that "transforming the nature of hope" is the essence of the experience.Conclusion: Family-centred care, gaining insight into parental spiritual practices, and developing culturally-appropriate care are recommended.

SUBMITTER: Lin SC

PROVIDER: S-EPMC7241511 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

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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.

Lin Shih-Chun SC Huang Mei-Chih MC

International journal of qualitative studies on health and well-being 20201201 1

Background: Adolescents with brain stem dysfunction may undergo many invasive treatments, and parents are often faced with making the decision to withdraw treatment. However, in the face of their child's death, the spiritual practices of parents dealing with end-of-life decision-making remain under investigated.Purpose: This study explores the spiritual practices in parents making end-of-life decisions for adolescents on life support with brain stem dysfunction.Method: A des ...[more]

PMID: 32340564

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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.

Project description:IntroductionParents of infants and young children newly diagnosed with differences of sex development (DSD) commonly face medical and psychosocial management decisions at a time when they are first learning about the condition and cannot consult their child for input. The aim of this study was to identify areas of greatest need for parental decisional support.Methods34 parents of children receiving care for DSD at one of three US children's hospitals participated in a survey to learn what clinical and psychosocial decisions needed to be made on behalf of their child. Parents were then asked to identify and focus on a "tough" decision and respond to questions assessing factors affecting decision-making, decision-making preferences, decisional conflict, and decision regret. Descriptive analyses were conducted.ResultsDecisions about surgery and aspects of sharing information about their child's condition with others were the two most frequently reported decisions overall, experienced by 97% and 88% of parents, as well as most frequently nominated as tough decisions. Many parents reported mild to moderate levels of decisional conflict (59%) and decision regret (74%). Almost all parents (94%) reported experiencing at least one factor as interfering with decision-making (e.g., "worried too much about choosing the 'wrong' option"). Parents universally reported a desire to be involved in decision-making - preferably making the final decision primarily on their own (79%), or together with their child's healthcare providers (21%). The majority of parents judged healthcare providers (82%) and patient/family organizations (58%) as trustworthy sources of information.DiscussionParents of children with DSD encounter medical, surgical, and psychosocial management decisions. Despite difficulties including emotional distress and informational concerns (including gaps and overload), parents express strong desires to play key roles in decision-making on behalf of their children. Healthcare providers can help identify family-specific needs through observation and inquiry in the clinical context. Together with families, providers should focus on specific clinical management decisions and support parental involvement in making decisions on behalf of young children with DSD.

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.

Project description:BackgroundShared 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.ObjectiveThis 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.MethodsA 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.ResultsRecruitment 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.ConclusionsThe 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 registrationISRCTN Registry ISRCTN39238984; http://www.isrctn.com/ISRCTN39238984.International registered report identifier (irrid)DERR1-10.2196/14571.

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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.

Publications

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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