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Decisions for Long-Term Ventilation for Children. Perspectives of Family Members.

ABSTRACT: Rationale: The decision whether to initiate or forgo long-term ventilation for children can be difficult and impactful. However, little has been published on the informational and decisional needs of families facing this decision.Objectives: To assess what families with children with chronic respiratory failure and life-limiting conditions need and want for informed decision-making.Methods: English- and Spanish-speaking parents who were facing (contemporaneous decision makers) or had previously faced (former decision makers) a decision regarding invasive or noninvasive long-term ventilation for their children were recruited using convenience sampling. Patients who were older and cognitively capable also were invited to participate. We performed semistructured interviews using an open-ended interview guide developed de novo to assess parents' decisional needs and experiences. Qualitative data analysis used a thematic approach based on framework analysis, and thematic saturation was a goal.Results: A sample of 44 parents and 2 patients from 43 families was interviewed. All contemporaneous decision makers (n = 28) favored or believed that they would choose long-term ventilation. Fifteen of 16 former decision makers chose long-term ventilation. Thematic saturation was achieved from the perspective of parents who favored or chose long-term ventilation. Four domains were identified: parents' emotional and psychological experiences with decision-making, parents' informational needs, parents' communication and decision support needs, and parents' views on the option not to initiate long-term ventilation. For most parents, making a decision regarding long-term ventilation was stressful, even though they articulated goals and values that could/did guide their decision-making. In general, parents wanted comprehensive information, including what life would be like at home for the child and the family. They wanted their medical providers to be honest, tactful, patient, and supportive. Parents reported that they felt being presented with the option not to initiate was acceptable.Conclusions: In this study, we identified specific informational and decision-making needs regarding long-term ventilation that parents facing decisions feel are important. These data suggest that providers should present families with comprehensive, balanced information on the impact of long-term ventilation and, when the child has a profoundly serious and life-limiting condition, explore the option not to initiate long-term ventilation.

SUBMITTER: Edwards JD

PROVIDER: S-EPMC6944342 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:RATIONALE:The decision of whether to initiate or forgo long-term ventilation (LTV) for children with life-limiting conditions can be complex and impactful. Providers are responsible for helping families to understand the consequences of their options and guiding them through shared decision-making, but little has been published on how to do this. OBJECTIVES:To assess how directors of pediatric home ventilation programs facilitate shared decision-making with families facing decisions of whether to initiate or forgo LTV for their children with life-limiting conditions. In addition, to assess directors' perspectives on these families' decisional needs. METHODS:Purposeful recruiting of directors/codirectors of pediatric home ventilation programs at children's hospitals was used. We performed semistructured interviews using an open-ended interview guide developed de novo to assess their approach to informed, shared decision-making around LTV and their perspectives on these decisions. Qualitative data analysis was conducted using a thematic approach based on framework analysis in which thematic saturation was achieved. RESULTS:A sample of 15 experienced physician directors across North America was interviewed. All (15/15) inform families of the potential benefits and burdens/risks of LTV for the child and of the option to forgo LTV. All stress to families the physical, emotional, and social impact of caring for a child using LTV on the family; 12 directors also highlight the financial impact. All recommend that decision-making around LTV should be interdisciplinary, initiated early, and not rushed; nine described their approach as guided by the family's goals for the child and their family. All recommend that providers be transparent, candid, active listeners, and supportive. All directors believe that the family's decision should be respected, but vary in the extent to which they recommend an option to families. They described barriers to decision-making that stem from families, providers, and other sources. CONCLUSIONS:As providers who follow children using LTV, directors of pediatric home ventilation programs have perspectives regarding the decisional needs of these families and how to meet them that can help inform and shape the practices of other providers who assist families facing this decision.

Project description:Background Opioids are currently prescribed for chronic non-cancer pain (CNCP), and some patients use opioids continuously for long-term treatment. Stakeholders’ awareness about long-term opioid therapy is essential for improving the safety and effectiveness of pain treatment. The purpose of this study is to explore the perspectives of pain specialists, patients, and family caregivers about long-term opioid use in CNCP management. Methods This study was a qualitative study and adhered to the COREQ guidelines. Pain specialists (n = 12), patients (n = 14), and family members (n = 9) were recruited to the study by purposive sampling at the Pain Clinic of Ramathibodi Hospital. Semi-structured interviews were recorded, verbatim transcribed, conceptually coded, and analyzed using Atlas.ti 8.0. Results All groups of participants described opioids as non-first-line drugs for pain management. Opioids should be prescribed only for severe pain, when non-opioid pharmacotherapy and non-pharmacological therapies are not effective. Patients reported that the benefits of opioids were for pain relief, while physicians and most family members highlighted that opioid use should improve functional outcomes. Physicians and family members expressed concerns about opioid-related side effects, harm, and adverse events, while patients did not. Patients confirmed that they would continue using opioids for pain management under supervision. However, physicians stated that they would taper off or discontinue opioid therapy if patients’ pain relief or functional improvement was not achieved. Both patients and family members were willing to consider non-pharmacological therapies if potential benefits existed. Patient education, doctor–patient/family relationships, and opioid prescription policies were proposed to enhance CNCP management. Conclusion Long-term opioid therapy for CNCP may be beneficial in patients who have established realistic treatment goals (for both pain relief and functional improvement) with their physicians. Regular monitoring and evaluation of the risks and benefits, adverse events, and drug-related aberrant behaviors are necessary. Integrated multimodal multidisciplinary therapies and family member collaborations are also important for improving CNCP management. Supplementary Information The online version contains supplementary material available at 10.1186/s12871-021-01501-8.

Project description:IntroductionThis paper details a subset of the findings from a participatory action research project exploring a palliative intervention in long-term care sites across Canada. The findings presented in this paper relate to understanding compassion within the context of a palliative approach to long-term care.MethodsFindings presented are drawn from qualitative interviews and focus groups with residents, family members, healthcare providers, and managers from 4 long-term care sites across 4 provinces in Canada. In total, there were 117 individuals (20 residents, 16 family members, 72 healthcare providers, and 9 managers) who participated in one of 19 focus groups. Data was analyzed by multiple members of the research team in accordance with thematic analysis. Individual concepts were organized into themes across the different focus groups and the results were used to build a conceptual understanding of compassion within Long Term Care .FindingsTwo themes, each comprised of 5 sub-themes, emerged from the data. The first theme 'Conceptualizing Compassion in Long-Term Care generated a multidimensional understanding of compassion that was congruent with previous theoretical models. 'Organizational Compassion: resources and staffing', the second major theme, focused on the operationalization of compassion within the practice setting and organizational culture. Organizational Compassion subthemes focused on how compassion could support staff to enact care for the residents, the families, one another, and at times, recognizing their pain and supporting it through grief and mourning.ConclusionsResults suggest that compassion is an essential part of care and relationships within long-term care, though it is shaped by personal and professional relational aspects of care and bound by organizational and systemic issues. Findings suggest that compassion may be an under-recognised, but essential element in meeting the promise of person-centred care within long-term care environments.

Project description:ContextChildren with Down syndrome are at risk for obstructive sleep apnea, which may not be resolved by adenotonsillecotmy, as well as other respiratory disorders that may impact breathing during sleep. Long-term non-invasive ventilation, including continuous and bilevel positive airway pressure delivery, is an alternate treatment strategy.ObjectiveTo assess the use and outcomes of long-term non-invasive ventilation in children with Down syndrome including comparison to other children using long-term non-invasive ventilation.Data sourcesThe search strategy for the scoping review used Medical Subject Headings (MeSH) and free-text terms for "child" and "non-invasive ventilation." MEDLINE (Ovid), Embase (Ovid), CINAHL (Ebsco), Cochrane Library (Wiley), and PubMed databases were searched (1990-2021).Study selectionThe scoping review results were searched to identify studies including data on at least three children with Down Syndrome using long-term non-invasive ventilation.Data extractionStudy characteristics, subject characteristics, technology type, and outcome measurements were extracted.ResultsA total of 28 articles included 543 children with Down syndrome using long-term non-invasive ventilation. Children with Down syndrome accounted for 18% of children using long-term non-invasive ventilation. Data on efficacy, feasibility, and adherence in children with Down syndrome are comparable to other children. Children with Down syndrome may have greater difficulty initiating long-term non-invasive ventilation, longer time to establish use, and a higher rate of inability to establish use. Outcome data is limited but suggest favorable impact on cardiac function and attention.LimitationsArticles related to long-term non-invasive ventilation use in adolescents and young adults may have been excluded.ConclusionsChildren with Down syndrome make up a significant portion of the population of children using long-term non-invasive ventilation. While there is more limited data available with respect to the use and outcomes for children with Down syndrome compared to the other children, long-term non-invasive ventilation is an effective and well-tolerated therapy with no clear differences in the use or outcomes for children with Down syndrome. Additional work is needed to understand potential challenges around establishing long-term non-invasive ventilation use in children with Down syndrome.Systematic review registrationhttps://www.crd.york.ac.uk/prospero/display_record.php?RecordID=206533, identifier: CRD206533.

Project description:To determine the degree to which an ICU patient's family member having an "anxious" psychologic attachment orientation is a risk factor for developing long-term posttraumatic stress disorder (PTSD) symptoms following patient ICU discharge or death.DesignProspective cohort study.SettingSingle academic neuroscience ICU from November 2017 to September 2020.ParticipantsConsecutively enrolled sample of family members, one for each ICU patient with a minimum length of stay of 24 hours.InterventionsNone.Measurements and main resultsNear time of ICU discharge or patient death, we determined each participant's psychologic attachment orientation as anxious versus nonanxious via a brief standard survey tool, the Relationship Questionnaire, and measured other participant and patient characteristics as potential covariates. Six months after discharge or death, each participant completed the Impact of Events Scale-Revised (IES-R) to measure PTSD symptoms, with a score of greater than 24 indicative of clinically significant symptoms. Among 162 total participants, 10 of 27 participants (37.0%) with an anxious attachment orientation reported 6-month PTSD symptoms, compared with 24 of 135 nonanxious participants (17.8%) (relative risk, 2.08; 95% CI, 1.13-3.84; p = 0.02; risk difference 19.2%). In a subsequent univariate analysis of participant and patient covariates, anxious attachment orientation, participant Hispanic ethnicity, prior experience as a care partner of a patient with a disability, and participation in 3 or more formal ICU family meetings were all associated with 6-month PTSD symptoms. In a multiple logistic regression, anxious attachment remained an independent predictor of 6-month PTSD symptoms (odds ratio [OR], 3.64; 95% CI, 1.35-9.77; p = 0.01), as did Hispanic ethnicity (OR, 4.72; 95% CI, 1.34-16.6; p = 0.01) and participation in three or more ICU family meetings (odds ratio, 2.97; 95% CI, 1.14-7.68; p = 0.02).ConclusionsAn anxious psychologic attachment orientation is associated with double the risk of long-term PTSD symptoms among family members of ICU patients. Future interventions designed to decrease risk of adverse psychologic outcomes among ICU families could be initially tested for efficacy amongst those who fall into this high-risk category.

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Decisions for Long-Term Ventilation for Children. Perspectives of Family Members.

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