Family Involvement In Decision Research Articles

Definition and recommendations of advance care planning: A Delphi study in five Asian sectors.

In Confucian-influenced Asian societies, explicit end-of-life conversations are uncommon and family involvement in decision-making is crucial, which complicates the adoption of culturally sensitive advance care planning. To develop a consensus definition of advance care planning and provide recommendations for patient-centered and family-based initiatives in Asia. A five-round Delphi study was performed. The rating of a definition and 84 recommendations developed based on systematic reviews was performed by experts with clinical or research expertise using a 7-point Likert scale. A median = 1 and an inter-quartile range = 0-1 were considered very strong agreement and very strong consensus, respectively. The Delphi study was carried out by multidisciplinary experts on advance care planning in five Asian sectors (Hong Kong/Japan/Korea/Singapore/Taiwan). Seventy-seven of 115 (67%) experts rated the statements. Advance care planning is defined as "a process that enables individuals to identify their values, to define goals and preferences for future medical treatment and care, to discuss these values, goals, and preferences with family and/or other closely related persons, and health-care providers, and to record and review these preferences if appropriate." Recommendations in the domains of considerations for a person-centered and family-based approach, as well as elements, roles and tasks, timing for initiative, policy and regulation, and evaluations received high levels of agreement and consensus. Our definition and recommendations can guide practice, education, research, and policy-making in advance care planning for Asian populations. Our findings will aid future research in crafting culturally sensitive advance care planning interventions, ensuring Asians receive value-aligned care.

Codesign of a Quality Improvement Tool for Adults With Prolonged Critical Illness: A Modified Delphi Consensus Study.

Increasing numbers of patients experience a prolonged stay in intensive care. Yet existing quality improvement (QI) tools used to improve safety and standardize care are not designed for their specific needs. This may result in missed opportunities for care and contribute to worse outcomes. Following an experience-based codesign process, our objective was to build consensus on the most important actionable processes of care for inclusion in a QI tool for adults with prolonged critical illness. Items were identified from a previous systematic review and interviews with former patients, their care partners, and clinicians. Two rounds of an online modified Delphi survey were undertaken, and participants were asked to rate each item from 1 to 9 in terms of importance for effective care; where 1-3 was not important, 4-6 was important but not critical, and 7-9 was critically important for inclusion in the QI tool. A final consensus meeting was then moderated by an independent facilitator to further discuss and prioritize items. Carried out in the United Kingdom. Former patients who experienced a stay of over 7 days in intensive care, their family members and ICU staff. None. We recruited 116 participants: 63 healthcare professionals (54%), 45 patients (39%), and eight relatives (7%), to Delphi round 1, and retained 91 (78%) in round 2. Of the 39 items initially identified, 32 were voted "critically important" for inclusion in the QI tool by more than 70% of Delphi participants. These were prioritized further in a consensus meeting with 15 ICU clinicians, four former patients and one family member, and the final QI tool contains 25 items, including promoting patient and family involvement in decisions, providing continuity of care, and structured ventilator weaning and rehabilitation. Using experience-based codesign and rigorous consensus-building methods we identified important content for a QI tool for adults with prolonged critical illness. Work is underway to understand tool acceptability and optimum implementation strategies.

Nurses' Experiences of the Prerequisites for Implementing Family-Centered Care to Prevent Pediatric Delirium.

The aim of this study was to describe nurses' experiences of the prerequisites for implementing family-centered care to prevent pediatric delirium. The research employed a qualitative, descriptive study design. A total of 10 nurses working in the pediatric intensive care unit at 1 university hospital participated in the study. The quality data were collected using individual semistructured interviews, and the data were then analyzed by inductive content analysis. The prerequisites for implementing family-centered care to prevent delirium among pediatric patients consisted of 30 subcategories that were grouped into 11 generic categories. The generic categories were further grouped into 5 main categories: (1) an environment that supports family presence, (2) psychosocial support for the family, (3) individual family involvement, (4) family participation in shared decision-making, and (5) nurses' professional competence. According to the nurses' experiences, the implementation of a family-centered approach to preventing delirium in pediatric patients requires creating a supportive environment for families, providing psychosocial support, encouraging family involvement in decision-making, and ensuring that all nurses have the necessary skills.

Assessment of Satisfaction Levels Among Families of Intensive Care Unit Patients in Saudi Arabia: A Cross-Sectional Study.

Background: Regularly measuring family satisfaction with intensive care unit (ICU) experience is crucial for ensuring high-quality care and identifying areas for improvement. This study aimed to evaluate family satisfaction with the ICU in Saudi Arabia. Methods: A cross-sectional survey was conducted among 248 family members of patients admitted to various ICUs. The survey assessed family satisfaction via a validated questionnaire, the Critical Care Family Satisfaction Survey (CCFSS), which includes five subscales: assurance, information, comfort, proximity, and support. Demographic data were also collected. Descriptive and inferential statistics were calculated. Results: The demographic distribution revealed that a majority of the participants were female (70.97%, n = 176), with the relationships with the patients predominantly being parents (41.94%, n = 104) or offspring (33.87%, n = 84). The overall satisfaction score was 3.79 ± 1.26, with 66.13% of the participants reporting high satisfaction, 20.97% reporting intermediate satisfaction, and 12.90% reporting low satisfaction. The mean subscale scores were as follows: assurance (3.82 ± 1.2), information (3.83 ± 1.25), comfort (3.81 ± 1.27), proximity (3.72 ± 1.28), and support (3.78 ± 1.28). The highest satisfaction scores were observed for sharing in decisions, noise levels, and staff honesty, whereas the lowest scores were for visiting hours flexibility, transfer preparation, and staff responsiveness. Males reported significantly greater satisfaction (4.24 ± 1.20) than females did (3.61 ± 1.11, p = 0.007). Conclusions: This study revealed moderate to high levels of family satisfaction with the ICU, with significant differences based on sex. The findings highlight the importance of effective communication, family involvement in decision-making, and supportive ICU policies. ICUs should regularly assess family satisfaction and use the results to guide quality improvement efforts, with a focus on areas with lower satisfaction scores.

Exploring the Experiences of Black Men Through the Decision-Making Process in Secure Settings: A Qualitative Study

Research has highlighted Black African and African Caribbean individuals within the United Kingdom not being involved in key aspects of decision-making and having more negative experiences of inpatient provisions. The aim of the current study was to explore Black men’s experiences of decision-making processes within mental health inpatient provisions within the United Kingdom and their perceptions of these services. The study used Interpretative Phenomenological Analysis (IPA), and semi-structured interviews were conducted with 5 Black men aged 33–40 who had experiences of mental health inpatient provisions within the last 10 years and had now been discharged. Eight Group Experiential Themes (GETs) and 9 sub-themes were identified: the role of/significance of medication, family involvement in decision-making and compliance with treatment and concordance around treatment. Participants highlighted a lack of involvement in decisions around their care. Inpatient mental health provisions need to support Black men to be involved in shared decision-making and encourage collaborative involvement in decisions.

Contraceptive utilization and associated factors among polygamous and monogamous women in Worebabo Woreda, South Wollo Zone, Ethiopia: a comparative cross sectional study

BackgroundIn Ethiopia high population growth and unintended pregnancies are posing pressures where the economy is incapable of holding overpopulation. Despite this problem, utilization of modern contraception is low in rural areas of the country, especially in the areas where polygamy is common. Therefore, this study was conducted to assess contraceptive utilization and associated factors among polygamous and monogamous women in, Ethiopia.MethodA community-based comparative cross-sectional and phenomenological study design was employed from July 1 to September 30, 2021, on the total sample size of 774 selected married women of the reproductive age group by using a multistage sampling method and a purposive sampling method were used for the qualitative part of the study. A pre-tested interview with a structured questionnaire was used to collect data and key informants were interviewed using semi-structured questionnaire. Associated factors were analyzed by using bivariable and multivariable binary logistic regression models. The odds ratio, with a 95% confidence level, was used to declare a statistically significant association.ResultA total of 703 married women of the reproductive age groups were interviewed, yielding a 90.89% response rate; among these married women, 352 and 351 were in monogamous and polygamous relationships. The proportion of women who use modern contraceptives was 161 (45.7%) in monogamous relationship, and 151 (43.0%) in polygamous relationships. Overall, utilization of modern contraceptives was significantly associated with educational status (AOR = 2.143, CI:1.428–3.216), religion (AOR = 1.704, CI: 1.144—2.539), undesired fertility (AOR = 3.17,CI:1.939–5.183), who decides on the number of children (AOR = 3.054, CI:1.93–4.832), getting clear information by Health care provider (AOR = 4.624, CI:3.132–6.828), family pressure (AOR = 1.855, CI:1.351–2.75), fear of social stigma (AOR = 2.482, CI:1.666–3.699), and accepts myths about contraceptives (AOR = 1.878, CI:1.278–2.761).ConclusionThis study identified that utilization of modern contraception was low in the study area. The district health office and concerned stakeholders should implement interventions that scale up contraceptive use, need family involvement in decision making, addressing myths around contraceptives, helping women to get education, and training of health care providers.

CHALLENGES AND RECOMMENDATIONS TO MEETING THE PALLIATIVE CARE NEEDS OF RESIDENTS IN ASSISTED LIVING

Abstract Of the more than 800,000 assisted living (AL) residents in the U.S. approximately 25% remain until the end of life and can benefit from palliative care (PC) and hospice care. Although the AL population is the fasting-growing segment of hospice care, increasing by 40% in the past five years, ALs still have special challenges in providing quality end-of-life care. ALs have a lack of nurse staffing and adequate training about how to care for those with serious illnesses. We present findings from studies over the last decade in Florida ALs (N=100) related to PC and hospice care practices. Some of the findings reveal gaps in care related to PC staff education, documentation of pain and advance directives and recognizing the need for more family involvement in decisions, especially for those with dementia. Recommendations on how to improve processes of care for residents who can benefit from PC will be discussed.

Co-designed and consensus based development of a quality improvement checklist of patient and family-centered actionable processes of care for adults with persistent critical illness

PurposeFew quality improvement tools specific to patients with persistent or chronic critical illness exist to aid delivery of high-quality care. Using experience-based co-design methods, we sought consensus from key stakeholders on the most important actionable processes of care for inclusion in a quality improvement checklist. MethodsItem generation methods: systematic review, semi-structured interviews (ICU survivors and family) members, touchpoint video creation, and semi-structured interviews (ICU clinicians). Consensus methods: modified online Delphi and a virtual meeting using nominal group technique methods. ResultsWe enrolled 138 ICU interprofessional team, patients, and family members. We obtained consensus on a quality improvement checklist comprising 11 core domains: patient and family involvement in decision-making; patient communication; physical comfort and complication prevention; promoting self-care and normalcy; ventilator weaning; physical therapy; swallowing; pharmacotherapy; psychological issues; delirium; and appropriate referrals. An additional 27 actionable processes are contained within 6 core domains that provide more specific direction on the actionable process to be targeted. ConclusionsUsing a highly collaborative and methodologically rigorous process, we generated a quality improvement checklist of actionable processes to improve patient and family-centred care considered important by key stakeholders. Future research is needed to understand optimal implementation strategies and impact on outcomes and experience.

Caregiver-Reported Roles in Treatment Decision Making in Advanced Cancer and Associated Caregiving Burden and Psychological Distress: A Longitudinal Study.

To longitudinally examine caregiver-reported treatment decision-making roles and to investigate the associations of these roles with caregiver burden, caregiving esteem, caregiver anxiety, and depression. 281 caregivers of patients with stage IV solid cancers were recruited from outpatient clinics in Singapore. Caregivers were eligible if they were aged ≥21 y, primary informal caregiver, and involved in treatment decision making. We used 3 y of longitudinal data. The decision-making roles were grouped into 4 categories: no family involvement, patient/physician-led, joint, and family-led/alone decision making. Mixed-effects linear regressions were used to assess associations between decision-making roles and caregiver outcomes. On average, 72% of caregivers reported family involvement in decision making. Compared with baseline, a higher proportion of caregivers at the 36-mo follow-up reported no family involvement (from 23% to 34%, P = 0.05) and patient/physician-led decision making (from 22% to 34%, P = 0.02), while a lower proportion reported family-led/alone (from 19% to 7%, P = 0.01) decision making. Compared with family-led/alone decision making, caregivers reporting no family involvement reported lower impact on finances (-0.15 [-0.28, -0.01], P = 0.03) while caregivers who reported patient/physician-led decision making reported lower impact on schedule and health (-0.12 [-0.20, -0.03], P = 0.01), and finances (-0.15 [-0.28, -0.03], P = 0.02), and lower anxiety (-0.69 [-1.17, -0.22], P < 0.01), and depressive symptoms (-0.69 [-1.12, -0.26], P < 0.01). Caregivers who reported joint decision making reported higher caregiving esteem (0.07 [0.01, 0.14], P = 0.02). Higher family involvement in decision making was associated with higher caregiver burden and psychological distress. Help should be given so that family caregivers can support patient decision-making in a meaningful way. Compared with baseline, a lower proportion of caregivers at the 36-mo follow-up reported family-led or family-alone decision making, and a higher proportion of caregivers reported patient-led or physician-led decision making.Higher levels of family involvement in decision making were associated with burdens on caregivers' daily life, health, and finances and increased caregiver anxiety and depression.Support must be given so that family members can contribute to making medical decisions in a rewarding manner.

Research and innovation and the role of competition in family owned and managed firms

PurposeThis paper examines the innovation behavior of family-owned firms versus non-family-owned firms. The role of internal family governance and the influence of external stimuli (competition) on innovation are also considered.Design/methodology/approachThe data of 20,995 family and non-family firms across 38 countries are derived from the World Bank Enterprise Survey during the period 2019–2020. Probit models are used to examine the impact of family ownership, family governance, and competition on innovation outcomes.FindingsFamily firms are more likely to make R&D investments, acquire external knowledge, engage in product innovation (including innovations that are new to the market) and process innovation, relative to non-family firms. However, a high propensity of family member involvement in top management positions can reduce innovation. Competition has a negative impact on innovation outcomes for both family and non-family firms, but it has a positive moderating effect on the innovation activities of family firms where a higher level of family member involvement in management is present.Originality/valueThis paper provides novel insights into family firm innovation dynamics by identifying family firms as more innovative than non-family firms for all types of indicators, debunking the idea that family firms are conservative, reluctant to change, and averse to the risks in innovation activities. However, too much family involvement in decision making may stifle some innovation activities in family firms, except in cases where the operating environment is highly competitive; this provides new insights into the ownership-management dynamic of family firms.

Barriers to an effective voucher programme for community-based aged care: a professional perspective

Abstract Long-term care for older people is increasingly turning to consumer-directed approaches. As a case in point, the Hong Kong Government recently implemented a new voucher programme for community-based aged care based on a consumer-directed approach: the Community Care Service Voucher for the Elderly (CCSV). The objectives of this study were to explore the lived experience of professional workers vis-à-vis the new programme and to identify barriers to effective voucher use by older people in Hong Kong. In-depth individual interviews were conducted with 16 professionals who had primary responsibility for the voucher programme for community-based aged care. The interview guide covered five main areas: (a) professional's perception and experience on the voucher programme; (b) the decision-making process around the voucher programme; (c) personal capacities of older people; (d) family support and social networks; and (e) institutional support. Findings indicate several barriers to effective use of the CCSV including: lack of self-awareness of service needs, lower education level, poor health condition, lack of financial resources, lack of family support, inadequate family involvement in decision-making, lack of peer and professional support, lack of available services and poor service accessibility. Suggestions for strengthening the voucher programme include institution of a case management model and public education. Different factors or elements are required to facilitate older people to make sound and informed choices, and a case manager can assist in combining different resources and forms of support towards effective use of the CCSV.

Dealing with Family Conflicts in Decision-making in End-of-Life Care of Advanced Cancer Patients.

The family plays a significant role in end-of-life care and decision-making with advanced cancer patients. This non-systematic review aims to summarize the family role and possible emerging conflicts and problems related to family involvement in decisions with advanced cancer patients. Four important domains were identified: (1) discordance between patients and caregivers' understanding of prognosis and goals of care; (2) internal family conflicts; (3) cultural differences regarding the role of the family in end-of life decision-making; (4) the burden on caregivers through caring for cancer patients. Based on the findings, we formulated some implications to consider for clinical practice. We suggest to involve the family in decision-making, to ascertain patients' wish for family involvement and if necessary, taking a mediator role between patients and their caregivers; to be aware of "invisible" family influence on patients' decisions; to assess systematically family burden and needs; to provide timely information, psychological support interventions and palliative care.

The Measure of Processes of Care 20-item (MPOC-20): Validity and Reliability of the Persian Version

Objective: Family-centered services are collections for children with special needs and their families. These services consider families as expert about children's needs. The essence of this approach is involvement of family in decision making, cooperation, and mutual communication (family and therapist), mutual respect, acceptance of family choice, family support, flexibility of service, and effort to empower families. These services have become a basic foundation of many early intervention programs and are especially useful in rehabilitation services. MPOC-20 is one of the questionnaires used to evaluate these services. This questionnaire consists 20 questions divided into 5 areas, the areas include the following: 1) enabling and partnership, 2) providing general information, 3) providing specific information about the child, 4) coordinated and comprehensive care for child and family, and 5) respectful and supportive care. This tool has been translated and validated in several countries and specifically in several diseases. In this study, the validity and reliability of this tool have been investigated. Materials &amp; Methods: This study was a descriptive-analytical and in order to measure the validity and reliability of MPOC-20, content validity, correlation coefficient and reliability of the test-retest were done. To determine the content validity, 14 occupational therapists were asked and the result was calculated by measuring the content validity index and content validity Ratio. Then, an MPOC-20 questionnaire along with a form of demographic information and a consent form were given to 340 parents of children (children under 18 years and with different diagnosis) in clinics of Tehran. The articipants consisted of 142 girls patients (42%) and 198 boys (58%) randomly selected from public and private rehabilitation centers in different regions of Tehran. A large percentage of respondents were mothers (314 people were 92.4%). After 2 weeks, the questionnaire was again distributed among 30 of them, and the ICC coefficients were calculated. In order to determine the internal consistency, Cronbach's alpha was calculated. Results: The content validity index and content validity Ratio for all items were acceptable and no items were deleted. Cronbach's alpha was 0.81 which indicates a high correlation between items in the questionnaire. The highest Cronbach's alpha coefficient is related to the field of providing general information about the child (α=0.77). Also, in this section, the p-value was significant for all fields at the level of 0.001. In the reliability of the test-retest, the scores of the Intra-class correlation coefficient of all domains were higher than 0/6 which indicates a medium to good reliability of the questionnaire. Reliability in the field of supportive care had a high coefficient and good reliability. In other areas, the reliability was moderate. Conclusion: Considering the importance of evaluation in improvement of family-centered services provision, a strong tool is needed and MPOC-20 is well known in this regard. The results of this study showed that the Persian version of "MPOC-20" questionnaire has a good validity and reliability in children under the age of 18, and it can be used to assess family-centered services in both research studies and as clinical tool.

"Often Relatives are the Key […]" -Family Involvement in Treatment Decision Making in Patients with Advanced Cancer Near the End of Life.

BackgroundFamily communication has been increasingly recognized as an important factor in decision making near the end of life. However, the role of the family in decision making is less studied in oncology settings, where most patients are conscious and able to communicate almost until dying. The aim of this study was to explore oncologists’ and nurses’ perceptions of family involvement in decision making about forgoing cancer‐specific treatment in patients with advanced cancer.Materials and MethodsQualitative semistructured interviews with 22 oncologists and 7 oncology nurses were analyzed according to the grounded theory approach. The results were discussed against the background of the clinical and ethical debate on family role near the end of life.ResultsWe could identify two approaches shared by both oncologists and nurses toward family involvement. These approaches could be partly explained by different perception and definition of the concept of patients' autonomy: (a) a patient‐focused approach in which a patient's independence in decision making was the highest priority for oncologists and (b) a mediator approach with a family focus in which oncologists and nurses assigned an active role to patients' family in decision making and strived for building consensus and resolving conflicts.ConclusionThe main challenge was to involve family, increasing their positive influences on the patient and avoiding a negative one. Thereby, the task of both oncologists and oncology nurses is to support a patient's family in understanding of a patient's incurable condition and to identify a patient's preference for therapy.Implications for PracticeThis study focused on oncologists’ and oncology nurses’ perceptions of family involvement in decision making about treatment limitation in patients with advanced cancer who are able to communicate in a hospital setting. Oncologists and oncology nurses should be aware of both positive aspects and challenges of family involvement. Positive aspects are patients’ emotional support and support in understanding and managing the information regarding treatment decisions. Challenges are diverging family preferences with regard to treatment goals that might become a barrier to advanced care planning, a possible increased psychological burden for the family. Especially challenging is involving the family of a young patient because increased attention, more time investment, and detailed discussions are needed.

Telenursing strategies in Iran: A narrative literature review

Introduction: Tele-nursing is a modern way of promoting quality of nursing care, treatment outcome, reducing medical costs and the need for visits, patient and family involvement in decision making, and careful patient monitoring by using all kinds of technologies. The aim of this article was to determine the most popular methods and related reasons for their common use in Iran. Methods: In this narrative literature review, PubMed, Science Direct, Google Scholar, SID, and Nindex were searched for full texts of Iranian studies published in English or Persian by using the descriptors of Tele-nursing, MHealth, nursing care, Telecare, and follow-up with phone calls between 2010 and 2020. The search found 472 articles and after considering the eligibility of articles, 56 articles were included. Results: The review found that 74% of papers reported the telephone as the first common method for tele-nursing. The second popular method was short message service (SMS) followed by internet and smartphone software. Conclusion: Tele-nursing includes many methods that nurses can use for distance nursing care which is not limited to telephone or SMS. In Iran, about 68 million people have a smartphone and have access to the internet. Nurses can use this potential capacity to improve nursing care.

How is family involved in clinical care and decision-making in intensive care units? A qualitative study

Background: Involving family members in patient care is considered as a significant dimension of family-centered care in intensive care units (ICUs). Aims: To describe family members’ perceptions and experiences regarding involvement in clinical care delivery and decision-making in ICUs in Iran. Design: A qualitative research method using conventional content analysis. Methods: A total number of 24 participants were selected through purposive sampling method between 2018 and 2019. Each interview also lasted between 30 and 60 min and the inductive data analysis was used. Results: The findings revealed that non-agreed involvement in clinical care delivery and family involvement in decision-making is being implemented on a continuum of paternalistic views. Conclusion: Healthcare providers, particularly nurses, and policy makers can thus exploit these findings to strengthen family involvement in this regard and consequently improve quality of care. Impact statement: A non-agreed approach and paternalistic views along with some barriers can affect family members’ involvement in providing clinical care and making decisions in ICUs in Iran.

Family involvement in the context of chronic diseases: The role of social support in treatment decision-making for surgical procedures

If medical decision-making about complex treatment options (such as surgical procedures) is challenging for patients, family members can provide them with advice and health information. Previous research about family involvement in health communication has largely focused on cancer patients. Thus, it lacks an examination of family involvement in surgery decision-making in the context of non-life-threatening chronic diseases like arthrosis. In particular, we focus on the role of social support for family involvement in these situations. Against this background, we conducted semi-structured qualitative interviews with arthrosis patients and their family members (n = 32 patients; n = 8 relatives). To better understand family involvement in surgery decision-making, three research questions were analyzed: (1) What are the perceived characteristics of the arthroplasty decisional process? (2) Which patterns of family involvement exist with regard to social support? (3) What general circumstances are relevant for family involvement? Our results demonstrate that social support plays an important role in the patterns of family decision-making. Instrumental, emotional, and informational support can indirectly enhance family involvement in decision-making. In addition, relatives are also directly involved in decision-making processes and may instigate the decision. The type of family involvement is influenced by characteristics of the decision-making situation. In addition to personal factors and the relationship with the physician, which is perceived as less supportive, the need for familial decisional support intensifies.

Some Unresolved Ethical Challenges in Healthcare Decision-Making: Navigating Family Involvement

Family involvement in healthcare decision-making for competent patients occurs to varying degrees in many communities around the world. There are different attitudes about who should make treatment decisions, how and why. Legal and professional ethics codes in most jurisdictions reflect and support the idea that competent patients should be enabled to make their own treatment decisions, even if others, including their healthcare professionals, disagree with them. This way of thinking contrasts with some cultural norms that put more emphasis on the family as a decision-making entity, in some circumstances to the exclusion of a competent patient. Possible tensions may arise between various combinations of patient, family members and healthcare professionals, and healthcare professionals must tread a careful path in navigating family involvement in the decision-making process. These tensions may be about differences of opinion about which treatment option is best and/or on who should have a say or influence in the decision-making process. While some relevant cultural, legal and policy considerations vary from community to community, there are ethical issues that healthcare professionals need to grapple with in balancing the laws and professional codes on decision-making and the ethical principle of respecting patients and their autonomy. This paper will highlight and propose that a partial resolution to these issues may lie in relational understandings of autonomy, which in principle justify interventions by healthcare professionals and family that support patients in decision-making.

FACTORS ASSOCIATED WITH MORTALITY AMONG LONG-TERM CARE RESIDENTS TRANSITIONING TO AND FROM EMERGENCY DEPARTMENTS

Studies examining risk of death during acute care transitions have highlighted potential predictors of death during transition. However, they have not closely examined the relationships and directional effects of organizational context, care processes, resident demographics and health conditions on death during transition. By employing structural equation modeling, we aimed to 1) identify predictive factors for residents who died during transitions from long term care (LTC) to emergency departments (EDs) and back; 2) examine relationships between identified organizational, process and resident factors with resident death during these transitions; and 3) identify areas for further investigation and improvement in practice. We tracked every resident transfer from 38 participating LTC facilities to two included EDs in two Western Canadian provinces from July 2011 to July 2012. Overall, 524 residents were involved in 637 transfers of whom 63 residents (12%) died during the transition. Sustained dyspnea (in both LTC and the ED), sustained change in level of consciousness (LOC) and severity measured by triage score were direct and significant predictors of resident death during transition. The model fit the data, (x2 = 83.77, df = 64, p = 0.049) and explained 15% variance in resident death. Dyspnea and change in LOC in both LTC and ED needs to be recognized regardless of primary reason for transfer. More research is needed to determine the specific influences of LTC ownership models, family involvement in decision-making, LTC staff decision-making on resident death during transition, and interventions to prevent pre-death transfers.

Family Involvement in Decisions to Forego or Withdraw Dialysis: A Qualitative Study of Nephrologists in the United States and England

BackgroundShared decision making may be particularly complex for the older patient with end-stage renal disease (ESRD), in part because of family involvement. Nephrologists’ perspectives on the family’s role in ESRD decision making have not been explored.Study DesignSemi-structured, individual, qualitative interviews.Setting & ParticipantsPracticing US and English adult nephrologists.MethodologyParticipants were purposively sampled based on age, race, sex, geographic location, and practice type. Each was asked about his or her perspectives and experiences related to foregoing and withdrawing dialysis therapy.Analytical ApproachInterviews were audiotaped, transcribed, and analyzed using narrative and thematic analysis.ResultsWe conducted 59 semi-structured interviews with nephrologists from the United States (n = 41) and England (n = 18). Most participants were 45 years or younger, men, and white. Average number of years since completing nephrology training was 14.2 (SD, 11.6). Nephrologists in both countries identified how patients’ families may act to facilitate or impede decisions to forego and withdraw dialysis therapy, which fell within the following subthemes: (1) emotional response to decision making, (2) involvement in patient health care/awareness of illness, (3) trust in physician, and (4) acceptance of patient wishes. Only US nephrologists raised families’ financial dependence on patients as an impediment to foregoing or withdrawing dialysis therapy.LimitationsParticipants’ views may not fully capture those of all US or English nephrologists.ConclusionsNephrologists in the United States and England identified several ways that patients’ families help and hinder ESRD decision making in keeping with patient prognosis and preferences. Nephrologists should hone their communication skills to better navigate these interactions.