Family Members' Perspectives of Health Care System Interactions With Suicidal Patients and Responses to Suicides: Protocol for a Qualitative Research Study.
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ABSTRACT:
SUBMITTER: Bryksa E
PROVIDER: S-EPMC6709894 | biostudies-other | 2019 Aug
REPOSITORIES: biostudies-other
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Family Members' Perspectives of Health Care System Interactions With Suicidal Patients and Responses to Suicides: Protocol for a Qualitative Research Study.
Bryksa Erin E Shalaby Reham R Friesen Laura L Klingle Kirsten K Gaine Graham G Urichuk Liana L Surood Shireen S Agyapong Vincent V
JMIR research protocols 20190809 8
<h4>Background</h4>Suicide is a major cause of preventable death globally and a leading cause of death by injury in Canada. To support people who experience suicidal thoughts and behaviors and ultimately prevent people from dying by suicide, it is important to understand the individual and familial experiences with the health care system.<h4>Objective</h4>This study aims to explore how suicide victims, and their family members, interacted with the health care system.<h4>Methods</h4>We will invit ...[more]
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Project description:BackgroundSuicide is a major cause of preventable death globally and a leading cause of death by injury in Canada. To support people who experience suicidal thoughts and behaviors and to ultimately prevent people from dying by suicide, it is important to understand individual and familial experiences with the health care system.ObjectiveWe present the protocol for a study, the objective of which is to explore how people who died by suicide, and their family members, interacted with the health care system.MethodsThis is a quantitative research study. Data will be collected through a self-administered paper-based or online survey of the family member of patients who died by suicide. The sample size was calculated to be 385 (margin of error ±3%).ResultsData collection will start in October 2020 and results will be available by March 2021. We expect the results to shed light on the experiences of individuals who died by suicide and their family members with the health care system. The study has received ethical clearance from the Health Ethics Research Board of the University of Alberta (Pro00096342).ConclusionsOur study may inform practice, policy, and future research. The findings may shape how members of the health care system respond to people who are at risk of suicide and their families.International registered report identifier (irrid)PRR1-10.2196/19112.
| S-EPMC7723743 | biostudies-literature
Project description:Studies identified service members of the United States (US) Armed Forces as a high-risk group for suicide. A significant increase in the suicide rate in the US Armed Forces was found in recent years. To date, there is no military suicide statistic available for the German Armed Forces. This study examined attempted and completed suicides in active service members of the German Armed Forces between 2010 and 2016 retrospectively, on the basis of archived personal and medical records in the central archives of the Medical Service of German Armed Forces. The primary goal was to establish a suicide-statistic for the German Armed Forces and to calculate and compare the suicides rates with the German population. Secondary every case's data was analysed the groups of attempted and completed suicides were compared. 262 attempted suicides and 148 completed suicides were included in this study (N = 410). The suicide rates of the German Armed Forces peaked over the years 2014-2015 with a suicide rate of 15-16/100.000 active military service members and exceeded the civilian suicide rate in Germany of around 12/100.000 people during those years, although no general trend could be determined. These service members were mostly young men (attempted suicide 81.7%, completed suicide 99.3%), at the age of 17 - <35 years old (87% attempted suicide, 68,3% completed suicide), and were employed less than 6 years in the German Armed Forces (attempted suicide 72.9%, completed suicide 46.3%). Service members with attempted suicides belonged mostly to the military North Atlantic Treaty Organization (NATO)-rank-group for other ranks (lowermost military professionals) OR-1 -OR-4 (48.1%) or to the rank-group OR-6 -OR-9 in the group of completed suicides (34.5%). Only in about one third of cases a psychiatric diagnosis could be found in the records. Most frequent diagnoses were neurotic, stress-related and somatoform disorders (International Classification of Diseases Tenth Revision^ICD-10: F4) in 46.8%, and affective disorders (ICD-10: F3) in 43.3% of all cases. In the majority of cases there were signs for potential stressors in the private sector (attempted suicide 90.6%, completed suicide 82.6%). No typical risk factors which would enable a specific prevention could be identified in this analysis. Therefore, should preventive strategies be aiming at a multi-level intervention program.
| S-EPMC8376105 | biostudies-literature
Project description:INTRODUCTION:Unequal access to kidney transplantation is suggested, but no systematic inventory exists about factors influencing access to kidney transplantation. There is an absence of any research that has combined stakeholder perspectives along the complete trajectory of transplantation. The present qualitative study explores the contributing factors from the perspectives of multiple stakeholders in this trajectory, including patients, health professionals and health insurance and financial representatives in the Netherlands. Moreover, stakeholders will be invited to suggesting strategies and solutions for handling the facilitating and hindering factors found. By means of interaction, stakeholder groups will arrive at a consensus for new policymaking in the field of a Dutch transplantation care. METHODS AND ANALYSIS:The different stakeholders' perspectives and possible solutions will be explored by interviewing in three phases. In the first phase, stakeholders' group perspectives will be explored with individual interviews and focus group interviews without confrontation of views from other perspectives. In the second phase of focus group interviewing, perspectives will be confronted with the other stakeholders' perspectives assessed. Finally, in the third phase, stakeholders will be invited to focus group discussions for suggesting solutions to overcome barriers and promote facilitators for improving access to transplantation. Approximately, groups from six to twelve participants per focus group and four to maximal six focus groups will be held per stakeholder, depending on the level of saturation, as prescribed by grounded theory. The interviews will be audio-recorded and transcribed verbatim, and qualitative data will be analysed according to the principles of grounded theory supported by using NVivo software. ETHICS AND DISSEMINATION:The Medical Ethical Committee of Erasmus MC, Rotterdam, The Netherlands, has approved this study. The results will be disseminated in peer-reviewed journals and major international conferences.
| S-EPMC6773277 | biostudies-literature
Project description:BackgroundMost women with breast cancer in Ethiopia are diagnosed at an advanced stage of the disease, but the reasons for this have not been systematically investigated. This study, therefore, aimed to explore the main reasons for diagnosis of advanced stage breast cancer from the perspective of patients, family members, and health care providers.MethodsA qualitative study with in-depth interviews was conducted with 23 selected participants at Tikur Anbessa Specialized Hospital, Oncology Clinic using a semi-structured interview guide. These participants were 13 breast cancer patients, 5 family members, and 5 health care providers. Data were transcribed into English, coded and analyzed using thematic analysis.ResultsAwareness about the causes, risk, initial symptoms, early detection methods, and treatment of breast cancer were uncommon, and misconceptions about the disease prevailed among breast cancer patients and family members. There was a sense of hopelessness and uncertainty about the effectiveness of conventional medicine amongst patients and family members. Consequently, performing spiritual acts (using holy water) or seeking care from traditional healers recurred amongst the interviewees. Not taking initial symptoms of breast cancer seriously by the patients, reliance on traditional medicines, competing priorities, financial hardship, older age, fear of diagnosis of cancer, and weak health systems (e.g., delay in referral and long waiting period for consultation) were noted as the main contributors to late diagnosis. In contrast, persuasion by family members and friends, higher educational attainment, and prior experience of neighboring women with breast cancer were mentioned to be facilitators of early diagnosis of breast cancer.ConclusionsThe causes of late diagnosis of breast cancer in Ethiopia are multi-factorial and include individual, cultural, and health system factors. Interventions targeting these factors could alleviate the misconceptions and knowledge gap about breast cancer in the community, and shorten waiting time between symptom recognition and diagnosis of breast cancer.
| S-EPMC6675093 | biostudies-literature
Project description:INTRODUCTION:Identifying research gaps can inform the design and conduct of health research, practice and policies by informing the current body of evidence. Audiences including researchers, clinical guideline developers, clinicians, policymakers, research regulatory bodies, funders and patients/the public can also benefit from understanding the status of research and research gaps to make informed choices. This study aims to explore how key informants define research gaps and characterise methods/practices used to identify and display gaps in health research to inform future research practice and policies. METHODS AND ANALYSIS:This is an exploratory qualitative study using semi-structured in-depth interviews. The participants will be recruited by purposive sampling from initiatives and organisations previously identified in a scoping review on methods to identify, prioritise and display gaps in health research. We anticipate performing up to 28 interviews with the different key informant groups who are involved in using evidence to inform health policy, practice and research. Interviews will be thematically analysed as outlined by Braun and Clarke. The qualitative data-analysis software NVivo V.12 Pro will be used to aid data management and analysis. DISCUSSION:This is the protocol for a follow-up study that aims to complement and enrich the findings of the scoping review on methods to identify, prioritise and display gaps in health research. The overall project aims to develop methodological guidance for describing, identifying and displaying gaps in health research. ETHICS AND DISSEMINATION:The research obtained ethical approval from the University of Liverpool, UK. The findings will be disseminated via conferences, meetings (organised by the Methods in Research on Research project), peer-reviewed publications and lay magazines because the study participants will include the public/patients.
| S-EPMC6731867 | biostudies-other
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.
| S-EPMC8576950 | biostudies-literature
Project description: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.
| S-EPMC6944342 | biostudies-literature
Project description:The Navajo Nation placed a moratorium on genetic research studies in 2002, in part due to concerns about historical distrust, exploitation, limited expertise and resources, and the lack of a genetics policy. Navajo tribal leaders, scientists, and policy experts are exploring the possibility of lifting the moratorium, developing a genetic research policy, and discussing its potential health implications. This study aimed to identify the key concerns, needs, and desires of Navajo people regarding genetic research. We conducted a survey of Navajo individuals to assess knowledge of the moratorium and research, gauge interest in genetic research, and quantify appropriate genetic research topics to understand broad views and concerns. We performed descriptive statistics and tested associations between relevant categorical variables using Chi-square tests. We hypothesized that individuals with more knowledge about the moratorium and health research increased the likelihood of supporting and participating in genetic research. A total of 690 surveys from Navajo respondents were analyzed. Of these, 63% of respondents reported being unaware of the Navajo Nation's moratorium on genetic research. There were positive associations between those who knew about the moratorium and willingness to donate biospecimens for research under certain conditions, such as community involvement, review and approval by community leaders, research on diseases affecting the community, and support for lifting the moratorium (p-values < 0.001). We found no significant differences between age, gender, religious/spiritual beliefs, or agency affiliation with knowledge levels of genetics and related topics, participation in relation to beliefs, and donation of biospecimens. Interestingly, respondents who resided off the Navajo Nation were positively associated with having knowledge of the moratorium, having heard of discussions of genetics on the Navajo Nation, and the lawsuit filed by the Havasupai Tribe. Most respondents agreed that it was very important to develop a policy that incorporates cultural knowledge (56%), is beneficial (56%), and has data sharing protections (59%) before allowing genetic research on the Navajo Nation. Overall, a large proportion of respondents (46%) were unsure about lifting the moratorium and instead wanted more genetics education to assess its potential implications. The study results can inform the direction of future guidelines and policies.
| S-EPMC8675633 | biostudies-literature
Project description:BackgroundNursing home residents (NHR) are characterized by increasing frailty, multimorbidity and care dependency. These conditions result in frequent hospital transfers which can lead to negative effects on residents' health status and are often avoidable. Reasons for emergency department (ED) visits or hospital admissions are complex. Prior research indicated factors influencing transfer decisions in view of nursing staff and general practitioners. The aim of this systematic review is to explore how family members experience and influence transfers from nursing home (NH) to hospital and how they are involved in the transfer decision.MethodsA systematic literature search was performed in Medline via PubMed, Ebsco Scopus and CINAHL in May 2018. Studies were eligible if they contained information a) about the decision to transfer NHR to hospital and b) the experiences or influence of family members. The review followed Joanna Briggs Institute's (JBI) approach for qualitative systematic reviews. Screening, selection and quality appraisal of studies were performed independently by two reviewers. Synthesis of qualitative data was conducted through meta-aggregation.ResultsAfter screening of n?=?2863 articles, in total n?=?10 qualitative studies were included in the review. Results indicate that family members of NHR experience decision-making before hospitalization differently. They mainly reported NH-related, hospital-related, and family/resident-related factors influencing the transfer decision. The involvement of family members in the decision-making process varies - from no involvement to insistence on a decision in favor of their personal preferences. However, hospital transfer decisions and other treatment decisions (e.g. advance care planning (ACP) discussions) were commonly discussed with physicians and nurses. Conflicts between family members and healthcare providers mostly arose around the interpretation of resident's best interest. In general, family members perceive discussions as challenging thus leading to emotional stress and discomfort.ConclusionThe influence of NHR family members concerning hospital transfer decisions varies. Family members are an important link for communication between resident and medical staff and for communication between NH and hospital. Interventions aiming to reduce hospitalization rates have to take these findings into account.
| S-EPMC6549333 | biostudies-literature
Project description:BackgroundEating disorders are serious conditions that cause major suffering for patients and their families. Better knowledge about perceptions of eating disorders and their treatment, and which factors that facilitate or hinder recovery, is desired in order to develop the clinical work. We aimed to explore and synthesise experiences of eating disorders from the perspectives of those suffering from an eating disorder, their family members and health care professionals through an overarching meta-review of systematic reviews in the field.MethodsA systematic literature search was conducted in the databases PubMed, PsycInfo, Scopus, and CINAHL. Inclusion criteria were systematic reviews of qualitative research on experiences, perceptions, needs, or desires related to eating disorders from the perspective of patients, family members or health care professionals. Systematic reviews that fulfilled the inclusion criteria were assessed for relevance and methodological limitations by at least two researchers independently. The key findings were analysed and synthesised into themes.ResultsWe identified 17 systematic reviews that met our inclusion criteria. Of these, 13 reviews reported on the patients' perspective, five on the family members' perspective, and three on the health care professionals' perspective. The study population in the reviews was predominantly girls and young women with anorexia nervosa, whilst systematic reviews focusing on other eating disorders were scarce. The findings regarding each of the three perspectives resulted in themes that could be synthesised into three overarching themes: 1) being in control or being controlled, 2) balancing physical recovery and psychological needs, and 3) trusting relationships.ConclusionsThere were several similarities between the views of patients, family members and health care professionals, especially regarding the significance of building trustful therapeutic alliances that also included family members. However, the informants sometimes differed in their views, particularly on the use of the biomedical model, which was seen as helpful by health care professionals, while patients and family members felt that it failed to address their psychological distress. Acknowledging these differences is important for the understanding of anorexia nervosa and other eating disorders, and may help clinicians to broaden treatment approaches to meet the expectations of patients and family members.
| S-EPMC8642844 | biostudies-literature