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Background: Bispectral index (BIS) monitoring uses electroencephalographic data as an indicator of patients' consciousness level. This technology might be a useful adjunct to clinical observation when titrating sedative medications for palliative care patients. However, the use of BIS in palliative care generally, and in the UK in particular, is under-researched. A key area is this technology's acceptability for palliative care service users. Ahead of trialling BIS in practice, and in order to ascertain whether such a trial would be reasonable, we conducted a study to explore UK palliative care patients' and relatives' perceptions of the technology, including whether they thought its use in palliative care practice would be acceptable., Methods: A qualitative exploration was undertaken. Participants were recruited through a UK hospice. Focus groups and semi-structured interviews were conducted with separate groups of palliative care patients, relatives of current patients, and bereaved relatives. We explored their views on acceptability of using BIS with palliative care patients, and analysed their responses following the five key stages of the Framework method., Results: We recruited 25 participants. There were ten current hospice patients in three focus groups, four relatives of current patients in one focus group and one individual interview, and eleven bereaved relatives in three focus groups and two individual interviews. Our study participants considered BIS acceptable for monitoring palliative care patients' consciousness levels, and that it might be of use in end-of-life care, provided that it was additional to (rather than a replacement of) usual care, and patients and/or family members were involved in decisions about its use. Participants also noted that BIS, while possibly obtrusive, is not invasive, with some seeing it as equivalent to wearable technological devices such as activity watches., Conclusions: Participants considered BIS technology might be of benefit to palliative care as a non-intrusive means of assisting clinical assessment and decision-making at the end of life, and concluded that it would therefore be acceptable to trial the technology with patients., (© 2022. The Author(s).)

Background: Military-related posttraumatic stress disorder (PTSD) is a complex diagnosis with non-linear trajectories of coping and recovery. Current approaches to the evaluation of PTSD and treatment discontinuation often rely on biomedical models that dichotomize recovery based on symptom thresholds. This approach may not sufficiently capture the complex lived experiences of Veterans and their families. To explore conceptualizations of recovery, we sought perspectives from Veterans and their partners in a pilot study to understand: 1) how Veterans nearing completion of treatment for military-related PTSD and their partners view recovery; and 2) the experience of progressing through treatment towards recovery., Methods: We employed a concurrent mixed methods design. Nine Veterans nearing the end of their treatment at a specialized outpatient mental health clinic completed quantitative self-report tools assessing PTSD and depressive symptom severity, and an individual, semi-structured interview assessing views on their treatment and recovery processes. Veterans' partners participated in a separate interview to capture views of their partners' treatment and recovery processes. Descriptive analyses of self-report symptom severity data were interpreted alongside emergent themes arising from inductive content analysis of qualitative interviews., Results: While over half of Veterans were considered "recovered" based on quantitative assessments of symptoms, individual reflections of "recovery" were not always aligned with these quantitative assessments. A persistent narrative highlighted by participants was that recovery from military-related PTSD was not viewed as a binary outcome (i.e., recovered vs. not recovered); rather, recovery was seen as a dynamic, non-linear process. Key components of the recovery process identified by participants included a positive therapeutic relationship, social support networks, and a toolkit of adaptive strategies to address PTSD symptoms., Conclusions: For participants in our study, recovery was seen as the ability to navigate ongoing issues of symptom management, re-engagement with meaningful roles and social networks, and a readiness for discontinuing intensive, specialized mental health treatment. The findings of this study highlight important considerations in balancing the practical utility of symptom severity assessments with a better understanding of the treatment discontinuation-related needs of Veterans with military-related PTSD and their families, which align with a contemporary biopsychosocial approach to recovery., (© 2021. The Author(s).)

Purpose: This study explored how parents, partners or spouses, siblings, and adult children, who had a relative living with a mental illness, experienced interactions with mental healthcare providers and staff., Design and Methods: A descriptive qualitative research process guided interviews with 20 family members about their experiences with the mental healthcare system., Findings: Analysis yielded similar and different themes of experience for each family role. Although navigating the mental system presented challenges, positive experiences affirmed family members' contributions to caregiving., Practice Implications: Involvement of family members contributes to inclusive care and promotes family satisfaction with care provided to their relative., (© 2020 Wiley Periodicals LLC.)

Objective: Breast cancer is a commonly diagnosed disease in nurses that, from recent years, has been linked to shift work and night work. Also, different components of work stress have such an impact on the nurses' health and work, family and social conciliation. The objective of this research was to analyze the family and working characteristics of Spanish nurses who perform shift work (including night shifts) in search of possible associations with manifestations of psychosomatic stress and the risk of breast cancer., Methods: A cross-sectional descriptive study was conducted through a virtual questionnaire in a sample of 966 Registered Nurses in Spain between December 2019 and November 2020. A descriptive analysis of sociodemographic and occupational variables was performed, and statistically significant differences and associations were contrasted by estimating risks and confidence intervals., Results: The number of night shifts throughout life and the number of years worked were statistically significant for the association with breast cancer. In addition, other psychosomatic manifestations such as insomnia, palpitations or extreme tiredness were highlighted. Among the most appreciated aspects to generate job satisfaction, co-worker's relationship was underlined., Conclusions: Rotating shift work can cause multiple clinical alterations that could lead to problems related to family conciliation, self-care or employment wellness. It is important to control the physical, psychological and emotional overload of nurses., Competing Interests: Disclosure The authors report no conflicts of interest in this work.

Purpose: Considering life-threatening nature of cancer and the problems that it causes for patients and families, recognizing their perspectives toward this issue is important. Therefore, the aim of this study was to determine perceived threats by immediate relatives of patients with esophageal cancer., Methods: Using content analysis approach, the present qualitative study was conducted in Golestan Province (north of Iran) in 2018. Through purposive sampling, 23 immediate relatives of patients with esophageal cancer were included in the study. The research techniques included semi-structured and deep interviews. We continued data collection to ensure data saturation was achieved. All interviews were recorded, transcribed, and then analyzed with Graneheim and Lundman's approach of conventional content analysis. The MAXQDA 11 software was applied to conduct the coding process., Results: Following data analysis, two main categories including "perceived susceptibility" and "perceived severity" were identified for perceived threats. The main category of "perceived susceptibility" comprised of four subcategory, namely, perception of individual, environmental, psychological, and nutritional predisposing factors to the disease. Four subcategories were also extracted for the "perceived severity," including perception of physical, psychological, therapeutic, and social consequences of the disease., Conclusions: Immediate relatives of patients with esophagus cancer perceived high severity and susceptibility toward this disease and considered themselves vulnerable to this disease. Hence, they suffered from a lot of psychological stress. Development of appropriate interventions regarding the effects of disease-related individual and environmental factors and empowerment of individuals with regard to preventive disease behaviors can be an important step for improving the health of this group., Registration Number: IRCT20180725040588N1, date registered: 2 October 2018.

Context: The request process for donation after circulatory death (DCD) and family concerns about DCD differ in significant ways from the process for, and family concerns about, donation after brain death (DBD). In addition, donation rates for DCDs are typically lower than for DBDs. Although there has been a great deal of research on how the concerns of DBD families impact donation, limited research exists on family concerns and decision-making in the DCD request process., Objective: To determine the concerns of families approached for DCD and explore how those might be addressed to increase DCD donation rates., Design, Setting, and Participants: Written request response forms were completed by organ procurement and family services coordinators from 4 organ procurement organizations in 4 different states. They were filled out as soon as possible after speaking with families about DCD., Main Outcome Measures: Responses were marked on a 12-item instrument, and anecdotal observations and detailed comments about family concerns, donor registration status, and decisions made were noted., Results: Family concerns that block DCDs differ in many ways from those that block DBDs. These concerns arise from stresses peculiar to the DCD situation and must be addressed for these types of donations to increase., Purpose of the Study: The purposes of the study are to identify family concerns about donating organs that are specific to DCD and that may differ from DBD and to distinguish how those concerns might be addressed in ways that increase the likelihood of donation., (Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.)

Objectives: To explore the experience of physical rehabilitation in the intensive care unit (ICU), from the perspective of patients and relatives., Design: Exploratory, qualitative study., Participants: Five former ICU patients and five family members of former ICU patients recruited from ICU support groups across the UK., Interventions: Semi-structured interviews., Main Outcome Measures: Participants' experiences of physical rehabilitation in the ICU. Data were analysed using an iterative thematic approach., Results: Four main themes were identified: Trust and Rapport, Necessity (of treatment), Psychological Benefit, and Goal Setting: Whose goal is it anyway? Despite a lack of enjoyment, patients tend to comply with physical rehabilitation, due in part to a positive patient-therapist relationship. There was agreement across participants that physical rehabilitation should be started as soon as possible after admission to ICU and exhaustion was highlighted as the biggest challenge to participation. In addition to aiding physical recovery, physical rehabilitation in the ICU may also provide psychological support for both patients and relatives. Finally, participants described a desire for therapists to direct goal setting in the early stages of recovery as they felt unable to engage in the process due to other priorities., Conclusions: The experience of physical rehabilitation on ICU may be influenced by key aspects of person-centred care. This study suggests that patients and relatives are keen for physical rehabilitation to start as soon as possible, which is a crucial new finding to support the practice of early rehabilitation in the ICU., (Copyright © 2020 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved.)

Deprescribing, in order to reduce both polypharmacy and the use of potentially inappropriate medications, remains a challenge, especially in nursing homes. Healthcare professionals perceive residents of these homes as wary of change and reluctant to take part in such endeavours. The results of two studies, one qualitative and the other quantitative, show that, on the contrary, nursing home residents and their relatives would be ready to consider a treatment reduction, provided that time is invested to explain the expected benefits of such changes., Competing Interests: Les auteurs n’ont déclaré aucun conflit d’intérêts en relation avec cet article.

Background: The World Health Organization (WHO) and the United Kingdom Committee for UNICEF recommend that secondary schools include infant feeding education in the curriculum. However, little attention has been given to the study of educators' views and practices regarding infant feeding education., Aims: The aims of this research were to (1) explore North Carolina Family and Consumer Sciences teachers' attitudes towards infant feeding education in secondary schools and (2) describe North Carolina Family and Consumer Sciences teachers' infant feeding education practices., Methods: Researchers conducted interviews ( N = 19) and a survey ( N = 137) using a sequential mixed methods design. The constant comparative method was used to analyze interview transcripts. Subsequently, a 33-item survey was developed to assess teachers' attitudes and practices, and this survey was tested for validity and reliability., Results: The majority of participants supported including infant feeding ( n = 119, 86.9%) and breastfeeding ( n = 116, 84.7%) education in high school. Approximately half of the participants supported including infant feeding ( n = 71, 51.9%) and breastfeeding ( n = 64, 46.7%) education in middle school. Participants reported that they taught infant feeding at both levels; topics taught included complementary foods, patterns of infant feeding, and the safe preparation of infant formula. Breastfeeding content was covered primarily in the high school Parenting and Child Development course., Conclusions: North Carolina Family and Consumer Sciences teachers have positive attitudes towards teaching about breastfeeding at the secondary school level. Content about infant nutrition and breastfeeding is currently included in courses that cover child development and human nutrition.

The COVID-19 pandemic has unhinged the lives of employees across the globe, yet there is little understanding of how COVID-19 health anxiety (CovH anxiety)-that is, feelings of fear and apprehension about having or contracting COVID-19-impacts critical work, home, and health outcomes. In the current study, we integrate transactional stress theory (Lazarus & Folkman, 1984) with self-determination theory (Deci & Ryan, 2000) to advance and test a model predicting that CovH anxiety prompts individuals to suppress emotions, which has detrimental implications for their psychological need fulfillment. In turn, lack of psychological need fulfillment hinders employees' abilities to work effectively, engage with their family, and experience heightened well-being. Our model further predicts that handwashing frequency-a form of problem-focused coping-will mitigate the effects of CovH anxiety. We test our propositions using a longitudinal design that followed 503 employees across the first four weeks that stay-at-home and social distancing orders were enacted. Consistent with predictions, CovH anxiety was found to impair critical work (goal progress), home (family engagement) and health (somatic complaints) outcomes due to increased emotion suppression and lack of psychological need fulfillment. Further, individuals who frequently engage in handwashing behavior were buffered from the negative impact of CovH anxiety. Combined, our work integrates and extends existing theory and has a number of important practical implications. Our research represents a first step to understanding the work-, home-, and health-related implications of this unprecedented situation, highlighting the detrimental impact of the anxiety stemming from the COVID-19 pandemic. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Background: Transfers to the ICU from acute care are common, and it is essential to understand how family members of critically ill patients experience these transitions of care., Research Question: Can we enhance our understanding of family members' experiences during hospital stays complicated by a patient's unplanned admission to the ICU?, Study Design and Methods: Qualitative interviews were conducted with family members of patients were transferred from acute care to the ICU at a level I trauma center in Seattle, WA (n = 17). To organize data, we used thematic analysis, coupled with a validated conceptual model of clinician-surrogate communication., Results: Drawing from a validated conceptual model, we used two domains to frame our coding: "information processing" and "relationship building." Within information processing, we coded information disclosure, sensemaking, and expectations; within relationship building, we coded emotional support, trust, and consensus and conflict. Family members wanted timely, accurate information about the patient's condition both during and after transfer. An unplanned ICU admission was a stressful event for family members, who looked to clinicians for emotional support. Developing trust was challenging, because family members struggled to feel like integrated members of the medical team when patients transitioned from one setting to another., Interpretation: Family of patients who experience an unplanned ICU admission want high-quality communication both during and after a patient's transfer to the ICU. This communication should help family members make sense of the situation, address unmet expectations, and provide emotional support. In addition, interventions that foster family-clinician trust can help family members feel like integrated members of the care team as they face the challenge of navigating multiple different environments within the hospital., (Copyright © 2020 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.)

Objective: Electroconvulsive therapy (ECT) is an effective treatment for major depressive disorder, but some aspects remain controversial. Few studies have taken an in-depth mixed methods approach toward the study of attitudes, and there are no significant studies that explore the change of attitudes before and after treatment. The aim was to compare attitudes of patients and their relatives before and after ECT using quantitative and qualitative methods., Methods: One hundred twenty-three participants were recruited. Forty-one patient/relative participants were recruited from 2 accredited ECT centers along with 82 age- and sex-matched general population controls. A validated 22-item survey about attitudes toward ECT was administered. Patient/relative participants completed the survey before treatment with ECT and engaged in a repeat survey and a semistructured interview 1 month after completion of ECT. Control participants completed the survey on a single occasion., Results: Control versus pre-ECT surveys and pre-ECT versus post-ECT surveys both demonstrated statistically and clinically significant positive attitudinal differences (Cohen d = 1.37, P < 0.001; Cohen d = 1.2, P < 0.001). These differences were maintained for both the patient and relative pre/post subgroups (Cohen d = 1.15, P < 0.001; Cohen d = 1.33, P < 0.001). Qualitative analysis identified 13 attitudinal transitions in cognition, emotion, and imagery domains., Conclusions: This is the first study to examine a change in attitudes toward ECT of patients, their relatives, and with controls using mixed methods. The findings suggest a 2-phase positive attitudinal change, in which accurate information (phase 1) and experiential learning (phase 2) are both key components. These findings address stigma through accurate knowledge and experiential learning, with a positive outcome through changed attitudes.

Objective: This study seeks to compare and contrast barriers to engage in physical activity (PA) among Latino parents in the USA and Mexico given different cultural and environmental contents., Methods: Four bilingual and bicultural trained research assistants conducted focus groups in Mexico and the USA RESULTS: There were 33 total participants. Twenty-one mothers were married; most participants had not completed above a high school education. Most participants were full-time stay-at-home mothers (59%). Analyses revealed several topics of discussion related to beliefs and barriers that contributed to family PA engagement: (1) walking is the most common form of PA for families in both countries; (2) parents believe people of all ages and genders can and should be physically active, but there are differences in access, opportunity, and ability; (3) major barriers to engaging in PA are different for those living in Mexico (safety concerns) than in the USA (weather constraints)., Conclusion: These findings have implications for behavioral interventions and understanding how environmental concerns impact Latino families trying to manage healthier lifestyles. Engaging community networks and resources can be a way to combat these barriers to promote PA in all contexts.

There are more than 43 million family caregivers in the United States. In studies of family caregivers and receivers, evidence suggests that family caregiver-receiver mutuality is linked to health. Lack of a clear definition of family caregiver-receiver mutuality is an obstacle that prevents scientific progress and effective operationalization of the concept. To address this issue, the authors applied Walker and Avant's method for concept analysis and clarified the concept of family caregiver-receiver mutuality. A standardized definition of caregiver-receiver mutuality is presented along with antecedents, consequences, defining attributes, empirical referents, and case illustrations.

Background: Improving quality of life (QOL) for people with dementia is a priority. In care homes, we often rely on proxy ratings from staff and family but we do not know if, or how, they differ in care homes., Methods: We compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative interviews., Results: Staff and family ratings were weakly correlated (ρs = 0.35). Median staff scores were higher than family's (104 v. 101; p < 0.001). Family were more likely than staff to rate resident QOL as 'Poor' (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with lower staff:resident ratios and when staff were native English speakers. Family rated QOL higher when the resident had spent longer living in the care home and was a native English. Spouses rated residents' QOL higher than other relatives. Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia., Conclusion: Proxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently.

Encouraging the public to donate their bodies after death is crucial for anatomy teaching in medical education. In Hong Kong, success may be affected if family members override the registered donors' wish after death, and thus the role of family in body donation is worth more attention. This study aims to examine how family is involved in the process of body donation. A qualitative study was conducted in Hong Kong. Registered donors and bereaved family members were recruited from a body donation scheme organised by a medical school. In-depth interviews were done and thematic analysis was conducted. Five themes were found: (a) decision-making: individual versus family; (b) family conflicts: avoidance versus confrontation; (c) trust in family members: discuss versus do not discuss; (d) family members' struggles in implementation; (e) informed end-of-life planning. Findings revealed that donors may not necessarily discuss their decisions about body donation with family members directly. Instead, it was found that family was involved in the body donation process in different ways and to different extents. For example, donors considered family members' views about body donation, but they chose not to involve them in the discussions if they expected objections, in order to avoid conflicts. Bereaved family members considered understanding family members' body donation decisions prior to death important, and they shared the implications of body donation for funeral arrangements and the grieving process. Findings help to understand the role of the family in body donation, especially in the Hong Kong Chinese context, and may give insights into how the body donation scheme could be enhanced to facilitate better communication between registered donors and family members as well as to support bereaved family members in implementing the decision to donate., (© 2019 John Wiley & Sons Ltd.)

Understanding African-American families' experiences with treatment for kidney failure is necessary for informing the delivery of family-centered care and the design of appropriate interventions. This qualitative study explored treatment-related questions, concerns, and family impacts among African-American family members of patients with pre-kidney failure and kidney failure. Thirty-five family members participated in focus groups stratified by patients' treatment experiences (pre-kidney failure, in-center hemodialysis, peritoneal dialysis, awaiting living-donor kidney transplantation, or post-transplantation). Family members raised questions and concerns about the psychological, lifestyle, and practical aspects of treatment. Similarly, discussions about family impacts emphasized psychosocial effects, lifestyle consequences, and the provision and receipt of support. Efforts to address these questions, concerns, and perceived family impacts through additional research, early and tailored education, and supportive interventions are needed., Competing Interests: The authors reported no actual or potential conflict of interest in relation to this continuing nursing education activity., (Copyright© by the American Nephrology Nurses Association.)

A global report found that the quality of dying in Hong Kong lagged behind that of other high-income economies. This study aims to examine the service gaps by conducting a qualitative exploratory study from multiple stakeholders' perspectives. Purposive and snowball sampling strategies were used to maximize variation in the sample. We interviewed 131 participants, including patients, family members, health care providers, administrators, lawyers, and policy makers. The situation analysis helped identify the facilitators and barriers at individual, organizational, and socio-cultural levels that affect service development. Findings showed that awareness on palliative and end-of-life care is growing, but the existing care is limited in terms of acceptability, coverage, variation in practices, continuity, and sustainability. A number of policy, economic, socio-cultural, environmental, and legal factors were also found to hinder service development. Findings of this study demonstrated that the development of palliative and end-of-life care services involved a paradigm shift relating to society as a whole. The overarching theme is to formulate a government-led policy framework. Furthermore, a public health approach has been advocated to create a supportive environment for service development., Competing Interests: Funding: This research was funded by Public Policy Research Funding Scheme [The Central Policy Unit of the Hong Kong Special Administrative Region Government] grant number [2016.A4.022.16C] And The APC was waived.

Aim: This study aims to explore the illness experience and needs of patients with pneumoconiosis and the caregiving experience of their respective family caregivers., Design: This is an exploratory qualitative study., Methods: Participants will be recruited during the annual patient interview with purposive sampling. Those with a confirmed diagnosis of pneumoconiosis for at least 1 year will be eligible. Patients with different levels of physical dependency will be recruited. The respective family caregivers of these patients, who are ≥21 years of age, assuming the role as primary caregivers of a pneumoconiosis patient will also be invited to join. In-depth interviews will be conducted in patients' home separately for patients and their caregivers and a home environment assessment will also be undertaken. The interview data will be transcribed verbatim, managed with the software NVivo 11 and analysed with content analysis. The ethical approval has obtained, and this study is supported by a research grant from the Pneumoconiosis Compensation Fund Board of Hong Kong on 14 August 2018., Discussion: This study will advance the knowledge on how pneumoconiosis patients and their family caregivers manage the disease in the family context. The findings of this study can inform the development of a family-oriented care model to support the pneumoconiosis patients and their family caregivers to manage this condition better., Impact Statement: Pneumoconiosis is the most common type of occupational lung disease in the Chinese population. These patients require long-term comprehensive services and support to assist their disease self-management. However, little is known about how these patients and their family caregivers manage the disease in the family context. The current study addresses this gap by exploring patients' illness experience and their family members' caregiving experience, which is timely to inform the design of family-oriented model of care to support this clinical cohort., Clinical Trial Registration: This study has been registered at ClinicalTrials.gov (NCT04022902)., (© 2019 John Wiley & Sons Ltd.)

Aim: The aim was to implement an educational programme for the family members of patients with oesophageal cancer on prevention behaviours in Golestan province, north of Iran., Design: In this mixed-method research, qualitative and quantitative studies will be conducted., Methods: This study will be carried out using an exploratory mixed-method design in Golestan province, north of Iran in 2018-2019. The research will include three consecutive phases. At first, a qualitative study will be carried out to determine the preventive behaviour and measures of oesophageal cancer. In this phase, the participants will be selected using the purposive sampling method. Later, semi-structured interviews will be conducted with the relatives of patients with oesophageal cancer to collect the necessary qualitative data. The second phase will include a literature review based on the information collected from the first phase. Later, a researcher-made questionnaire will be designed based on the extended parallel process model. Furthermore, a comprehensive programme will be proposed about self-care of the patients with oesophageal cancer. In the third phase, a quantitative quasi-experimental research will be conducted over two groups of participants to measure the effectiveness of this programme. This research was approved by the Ethics Committee of Yazd Shahid Sadoughi University of Medical Sciences, Iran in November 2017., Discussion: Educational interventions should be designed purposefully according to the needs of the target group to improve their self-care behaviours. We also expect that this research can improve the individuals' access to high-quality preventive behaviours with regard to oesophageal cancer., Trial Registration: The project was registered on the Iranian Registry of Clinical Trials, (registration number: IRCT20180725040588N1, date registered: 2th October 2018)., (© 2019 John Wiley & Sons Ltd.)

When a genetic disease-causing variant causing autosomal dominant diseases is identified, predictive DNA testing is possible for at-risk relatives to investigate whether they are carrying the familial variant. In current practice, the proband is asked to inform at-risk relatives, often supported by a family letter. This review summarizes the literature on preferences of probands and relatives regarding how and by whom at-risk relatives should be informed. A search involving digital databases (Pubmed, Medline, and PsycInfo) focusing on patient attitudes toward informing relatives at risk of autosomal dominant onco-, cardio-, or neurogenetic disease, resulted in 1,431 screened records, of which 117 full-text papers were assessed. Eventually, 32 studies were selected. This review shows that a majority of participants was in favor of someone in the family to inform their at-risk relatives, with participants generally feeling responsible for informing relatives at risk themselves. However, variation in patient preferences regarding who should inform was observed. Face-to-face disclosure by the proband with additional information material for relatives provided by HCPs was most appreciated. Actively offered support of healthcare professionals was desired. In conclusion, although the family-mediated approach was appreciated by a majority of participants, support by healthcare professionals was desired. By taking patient attitudes into account, the approach used to inform at-risk relatives could be improved. Subsequently, more relatives will be informed and enabled to attend genetic counseling and make an informed decision regarding predictive DNA testing. Further research on patient attitudes, specifying for disease type and cultural background, is needed., (© 2019 National Society of Genetic Counselors.)

Objectives: To investigate the demographics of children (and their caregivers) requiring hospital-based tertiary dental care, oral health services use and perceptions of and barriers to oral healthcare in Nova Scotia., Method: A questionnaire was administered to caregivers (N = 62) on behalf of their child (N = 62)., Results: Nearly half (45.8%, N = 27) of the caregivers experienced difficulty seeking oral healthcare for both themselves and their children. Less than a quarter (23.2%, N = 13) of the caregivers sought care for their child by the recommended age of one (mean age of first visit = 2.69 years). Alternate delivery in a school, community or primary healthcare setting was preferred by 53.3% (n = 32) of the caregivers for children's oral healthcare. Low-income families (53.8%, n = 28), rural areas (47.4%, n = 27) and Indigenous children (9.7%, n = 6) were over-represented in the study's sample., Conclusion: Socio-economically disadvantaged populations are more vulnerable to oral diseases. Oral health of priority populations in Nova Scotia appears to be inadequately addressed., (Copyright © 2019 Longwoods Publishing.)

Objective: The objective of this systematic review was to synthesize the best available evidence on patients', family members' and nurses' experiences with bedside handovers in acute care settings., Introduction: The transfer of patient information between nurses represents a critical component of safety within health care. Conducting handover at the bedside allows patients and families to participate in information exchanges. Studies that address bedside handover highlight benefits and concerns with their implementation. Insight into patients', families' and nurses' experiences with bedside handovers can help to identify the most appropriate and safest approach to handovers., Inclusion Criteria: The current review considered patients, family members and nurses in the acute care hospital setting. Nurses included licensed nurses, registered nurses, practical nurses, nursing assistants, nurse researchers, and advanced practice nurses., Methods: A three-step search strategy was used to identify English language qualitative primary research studies. Two reviewers independently appraised the included studies using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research. Qualitative studies that considered attitudes, beliefs and experiences of patients, families and nurses on patient presence during bedside handover were considered for this review. Papers included in the review were from 1998 to 2017., Results: The review included 12 qualitative publications. Key findings were extracted and classified as unequivocal (U) or credible (C). A total of 96 findings were extracted and aggregated into 14 categories. From the 14 categories, five synthesized findings were developed: i) becoming more informed; ii) upholding confidentiality and privacy; iii) varying desire and ability to participate; iv) individualizing patient care; and v) challenges in conducting bedside handovers can be overcome with adaptive practices., Conclusions: This review captured the experiences of patients, families and nurses with patient presence during bedside handovers in a hospital setting. For the most part, patients and families describe bedside handover positively, reporting feeling more informed and engaged in care. This review highlights areas where patients' and nurses' views on bedside reporting may differ, particularly in the areas of desire to participate and the need for confidentiality. Although hospital environments can create challenges in sharing personal patient information at the bedside, these may be overcome through education and by the adoption of a flexible and individualized approach.

Objectives: Familial hypercholesterolemia (FH) is a hereditary and usually asymptomatic condition characterized by elevated blood cholesterol and increased risk of premature cardiovascular disease. It is treated with dietary modifications and lipid lowering drugs. The objective was to learn about young FH patients' perceptions and choices regarding treatment., Methods: Data were collected through in-depth interviews with 24 patients (ages 16-35), and analysed according to Grounded Theory., Results: The findings are presented as theoretical concepts describing the participants' way of handling their condition. The core category was identified as "Thoughts of consequences vs. Postponing thoughts of consequences", which could be described through the following subcategories: 1. Normalising the condition, 2. Belittling of treatment vs. Committed to treatment and 3. Trust in advice vs. Avoid unnecessary interference. The participants' position regarding these categories was described to affect motivation and challenges with treatment., Conclusions: Participants who postpone the thoughts of consequences, belittle the treatment and avoid unnecessary interference represent a challenge to health care practitioners., Practical Implications: Practitioners should explore aspects such as thoughts of consequences, view of treatment and the feeling of interference to be able to better understand illness behaviour, adjust their communication and hopefully improve adherence., (Copyright © 2019 Elsevier B.V. All rights reserved.)

Purpose: Children with Down syndrome often present with a communication disability, and families require information to support their child's communication. Effective provision of information by professionals is an important part of family-centred practice. However, we currently do not know the specific communication information needs of families of children with Down syndrome. This study aimed to (1) explore families' experiences of communication information provision and (2) identify families' preferences regarding when, what and how they would like to receive information about communication., Method: A qualitative descriptive approach was used to explore the experiences and information needs of nine family members of children with Down syndrome aged 0-15 years. Data from semistructured, in-depth interviews were analysed using thematic analysis., Results: Three core themes were identified: (1) We want more information about communication to be provided by professionals now and into the future so we can be "self-help people." (2) We want general information resources that help us support our child's communication. (3) We want to have a two-way partnership with professionals so we can share and receive specific information about our child's communication., Conclusion: Ineffective information provision restricts families' capacity to be self-help people in supporting communication development. Ongoing provision of both general and specific information about communication is needed in different formats. This study informs the development of resources to better meet families' information needs., (© 2019 John Wiley & Sons Ltd.)

Purpose: Family members of people with disabilities may hold a unique position in that they may both internalize and reinforce ableism, and work to fight it through empowerment and resistance, making them a useful group for study to elicit understandings of disability and disability attitudes. The aim of this study was to explore the explicit (conscious) and implicit (unconscious) attitudes toward people with disabilities by family members of persons with disabilities., Research Method: To do so, we analyzed secondary data from 180,701 family members, comparing their explicit and implicit disability attitudes and examining correlates with attitudes., Results: Findings from our study suggest that although family members do not consciously believe they have negative attitudes, they unconsciously prefer nondisabled people., Conclusion: More work is necessary to reduce prominent and systemic negative attitudes about disability as most family members still had negative attitudes about people with disabilities. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Objective: This study examined the mediating role of caregiver distress on family factors and caregiver life satisfaction among an understudied population of Parkinson's disease caregiver in Mexico., Methods: A cross-sectional design was used to examine psychosocial factors pertinent to caregiver of individuals with Parkinson's disease ( n = 95). Guided by a caregiver stress process model, relations among family factors (e.g., cohesion, flexibility, quality of functioning), gender, distress, and satisfaction with life among caregiver were examined. Mediation analyses were performed to test the role of caregiver distress on the associations between family factors, gender, and caregiver satisfaction with life., Results: Mediation models demonstrated that caregiver distress fully mediated the relation between quality of family functioning and caregiver satisfaction with life and partially mediated the association between family flexibility and caregiver satisfaction with life. Caregiver gender did not emerge as a significant covariate, and null results were found in the model examining family cohesion as a predictor., Conclusion: These results underscore the critical role of caregiver distress and family factors on features of caregiver well-being, notably satisfaction with life. This evidence also offers cross cultural evidence for the caregiver stress process model, which has primarily been observed in Western samples. Accordingly, the need to build and disseminate empirically supported family-based treatments that emphasize caregiver distress is warranted.

Objective: This study aimed to assess the attitudes and beliefs of Spanish families regarding their elderly family members aged 75 years and over who live alone, with consideration of gender and educational differences among the family members., Methods: This qualitative study was based on the critical social paradigm, the theory of constructivist structuralism and Bourdieu's theory of sociology of action. Four discussion groups were created with the following distribution of family members based on their gender and educational level: women with higher education, women with basic or secondary education, men with higher education and men with basic or secondary education. Participants were selected using purposive and snowball sampling. Announcements inviting voluntary participation were posted at primary health care facilities, social centres and neighbourhood associations in Mallorca, Spain., Results: Analyses of the group discussions and a field journal revealed that families believe that elderly individuals prefer to live alone to retain their freedom and individual identities., Conclusions: Families held two main views regarding elderly individuals living alone: a more traditional one in which elderly care is considered a moral duty associated with women, and a more modern view in which elderly care is considered a personal option that can be delegated. Sociomedical resources were considered insufficient and not easily accessible., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: The ageing global population has seen increasing numbers of older people living with chronic health problems, declining function, and frailty. As older people seek to live out their years at home, family members, friends and neighbours (informal caregivers) are increasingly relied upon for support. Moreover, pressured health systems and shorter hospital length of stay mean that informal caregivers can find themselves supporting the older person who is still unwell after discharge. The Further Enabling Care at Home (FECH) program was developed as a nursing outreach intervention designed to systematically address support needs of family caregivers of older people after hospital discharge to sustain their home-based caregiving. The objective of this study was to explore the experiences of informal caregivers who participated in the FECH program after an older family member's discharge from hospital., Methods: The study employed a qualitative descriptive design. Caregivers of older people discharged home from a Medical Assessment Unit in an Australian hospital who were included in the program were interviewed to explore their experiences and perceptions of the FECH program. Data were audio-recorded, transcribed, and subjected to thematic analysis., Results: Twenty-one family caregivers (81% female, aged 25-89 years) participated in the interviews. Themes emerging were 'The experience of caregiving'; 'The experience of receiving FECH program support'; and 'Caregivers' suggestions for improvement'. Caregivers indicated that reflective discussions with the FECH nurse enabled them to recognise the complexity of the caregiving role and determine aspects where they needed support. Caregivers valued guidance from the FECH nurse in accessing information and resources, which helped them to feel more connected to support, more prepared to care for the older person and themselves, and more secure in the caregiving role., Conclusions: Caregivers' experiences indicated that the structured reflective FECH discussions prompted thought and provided guidance in navigating health and care systems. The FECH program appears to offer a means to address the practical, physical and psychosocial needs of informal caregivers as partners in person-centred health and social care., Trial Registration: ANZCTR Trial ID: ACTRN126140011746773 .

Background: This research deals with the way people create discourses around disability, which shape the community's concept of disability., Objective: The purpose of this article is to find out how the community configures "disability", in particular by understanding the ideas, needs and strategies that the community uses towards people with disabilities. Specifically, different roles have been involved, such as professionals, volunteers, family members and citizens. The final aim is intervening on the discourses that can contrast the full personal fulfilment of people with disabilities and social inclusion., Methods: This paper relates to discursive psychology's theoretical references and makes use of the Methodology of Textual Analysis. The tools we used include investigation protocols specially designed to detect text both through manual "pencil and paper" and computerized denominations., Results: The results show that those who are in direct contact with people with disabilities (volunteers and family members) are more exposed to treating them as disabled, making the deficit coincide with the person and also have a more judgemental approach., Conclusions: From the results obtained we can see which practices can be activated to facilitate the network between the various roles in order to implement inclusive interventions and help those more exposed to prejudices., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Family inclusion in treatment planning and delivery for people living with mental illness is advocated in government policy but is yet to be widely translated into practice. While external barriers have been identified, including concerns about consumers' best interests, little is known about consumers' own views. This study explores consumers' experiences and perspectives of including family in treatment. Semi-structured interviews were conducted with 13 adult consumers who could identify supportive family members. Data were analysed using constant comparative analysis. The findings indicated that the outcomes reported from family inclusion depended on who, how, how much and when family were included, and the degree of choice consumers had regarding these features For consumers to have real choice around these features, family inclusion needed to be accessible, families needed to be willing, and all parties needed to agree upon a consumer-centred purpose. Findings can aid health professionals to facilitate consumer choice.

Background/objective: This study aims to investigate the effects of phased education on attitudes toward organ donation and willingness to donate after brain death., Methods: A survey was conducted using a questionnaire to examine attitudes toward organ donation of the families of patients admitted to a surgical intensive care unit (SICU) between March 1, 2014 and September 30, 2016., Results: Ninety-two people voluntarily participated in this survey. Before reviewing the educational material, 75.0% had a positive attitude toward organ donation, 60.9% were willing to donate their own organs, and 38.0% were willing to donate a family member's organs. After reviewing the educational material, these figures increased to 92.4%, 80.4%, and 56.5%, respectively. Before receiving an education, there was a significant difference in consistency between people's attitudes and willingness to donate their own organs, versus donating a family member's organs (79.3% vs 54.3%, p < 0.001). With phased education, these percentages increased from 79.3% to 85.9% with regard to donating one's own organs, and from 54.3% to 64.1% with regard to donating a family member's organs., Conclusion: Phased education was effective overall, but it had a limited effect on changing the willingness to donate a family member's organs. It increased the consistency between people's attitudes toward organ donation and willingness to donate their own, or a family member's organs., (Copyright © 2018. Published by Elsevier Taiwan LLC.)

Family caregivers face multiple challenges when caring for patients with oral cancer at home. Understanding the difficulties they face may assist health professionals to better organise and provide support for family caregivers of oral cancer patients. The aim of this study was to describe the caregivers' primary tasks and the difficulties they encounter when caring for a family member with oral cancer. This qualitative study included a purposeful sample of 22 primary family caregivers ranging in age from 25 to 71 years old. The researchers used face-to-face, semi-structured and tape-recorded interviews to collect data and employed qualitative content analysis to elicit caregiving-related themes. Six task-related themes and associated challenges were identified. These included managing the patient's nutritional issues, investigating and making decisions about patient care, managing sudden and unpredictable changes in the patient's condition, managing emotional distress, adjusting their attitudes towards patient care, and seeking resources. Family caregivers handle such essential tasks when they care for patients in home settings and they face specific challenges related to them. This study identified several challenges related to each task. From the outset, healthcare providers should actively offer caregiving information and strategies. Health professionals can incorporate strategies for supporting caregivers' ability to carry out these tasks into their treatment model and can help caregivers manage difficulties that can impede them from doing so., (© 2018 John Wiley & Sons Ltd.)

The nature and outcome of family caregiving is different for various racial and ethnic groups. The purpose of the current study was to use qualitative methods to examine and characterize family networks of African American family caregivers (N = 26) who provided care to family members with dementia (N = 18). Researchers used data generated from a parent study that addressed family involvement in health promotion activities for African American older adults with dementia. Data were analyzed using sociograms and thematic analysis. Three themes that characterized African American family caregiving networks were identified: (a) Complexity, (b) Familism, and (c) Religiosity. Findings suggest that narrowly defining family caregivers as a dyad of a caregiver and care recipient does not reflect how these family networks function. A better understanding of the complex functioning of these networks may help explain physical and psychological well-being outcomes for individuals with dementia and their family members. [Res Gerontol Nurs. 2019; 12(1):20-26.]., (Copyright 2019, SLACK Incorporated.)

Context: Patient- and family-centered care (PFCC) literature is growing, but few reports present patient, caregiver, and practitioner perspectives about care coordination in a team-based model., Objective: To understand the patient's, caregiver's, and physician's ideal forms of PFCC, we investigated the function of the medical team quarterback, who coordinates and advocates for appropriate care, and probed to understand how the quarterback works with a team to contribute to ideal PFCC., Design and Main Outcome Measures: Nine focus groups with 92 participants were held in 3 major cities. Patients (n = 35) and family members (n = 36) were recruited through market research groups. Physicians (n = 21) were recruited by the American College of Physicians. Focus group transcripts were analyzed and coded using inductive analysis., Results: The quarterback emerged as an important function for addressing care gaps and improving the care experience. We identified 6 themes articulated by participants that defined the role of a medical team quarterback: Overseeing care; coordinating diagnoses, tests, and treatments; advocating for patients; identifying and respecting patient values; proactively communicating; and solving problems. Patients and family members in our sample were open to different members of the care team acting as quarterback in coordination with the physician., Conclusion: Medical team quarterbacks were perceived as enhancing team-based care by facilitating the coordination/communication that is critical to PFCC. Patients and family members acknowledged that PFCC can be delivered by different members of the medical team if the care felt organized and coordinated with the primary care physician.

Objective: Identify attitudes and behaviors that evidence and characterize family adherence to treatment in patients with severe mental disorder., Design: Qualitative descriptive, from an interpretative social approach., Location: Chia, Colombia, with professionals in the psychiatric and geriatric settings., Participants: Twelve professionals in psychiatry, nursing and psychology, with experience in care of patients with serious mental disorder and their families., Method: Intentional sampling. Twelve semi-structured interviews were carried out. The analysis strategy was made from the procedures of constant comparison and open coding of the grounded theory. As validation strategies, triangulation was done between researchers and methods, as interviews and results survey., Results: Two categories of family adherence were defined: family and treatment (treatment cooperation, knowledge about the disease and attention to the disease evolution), and family attitudes towards the patient (patient's care, patient's promotion of autonomy, and affective attachment with the patient). A third category showed aspects that diminished family adherence, such as lack or distortion of information regarding mental disorder, or family and patient endurance attitudes., Conclusions: Participants agree about the relevance of the construct named «family adherence», which describes the behaviors and attitudes of the family regarding the treatment of patients with severe mental disorder. Family adherence can be seen as active participation behavior, but also as a process of strengthening relationships, which can reduce the burden and suffering on family members, caregivers and patients., (Copyright © 2017 Elsevier España, S.L.U. All rights reserved.)

Purpose/objective: The aim of this exploratory study was to consider how spirituality (encompassing meaning, hope and purpose), may facilitate family resilience after spinal cord injury (SCI) over time. Research Method/Design: A qualitative, longitudinal study design was adopted. Semistructured interviews were conducted with 10 family dyads (consisting of the individual with SCI and a nominated family member) on 2 occasions, 6 months apart. A thematic analysis was conducted., Results: Participants reported drawing upon a range of different sources of spirituality, including religious faith, the natural world, inner strength, and meaningful connectedness with others. These sources of spirituality were often tested in some way after the SCI. Meaning-making responses to these tests were linked with 3 key outcomes: gratitude, hope, and deeper connectedness with others, assisting families to move forward in their journey after SCI. Over time sources of spirituality did not change significantly; however, the intensity of spiritual experience lessened for some families., Conclusions: This study indicated that spirituality after SCI plays an important role for both the injured individual and their family members. Families draw upon a range of sources of spirituality, and these sources of spirituality may assist the family to move forward together after SCI. Further investigation of how health professionals can better address spirituality during spinal rehabilitation is warranted. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

Background: Family refusal (FR) to heart beating donation (HBD) in Intensive Care Unit (ICU) is increasing in recent years with a significant impact on the number of transplantable organs. Fostering setting humanization, quality of relationships, respect for will and family reliance towards ICU could be relevant in containing FR to organ donation (OD) in ICU. Our aims were to highlight the effects of structural features of ICUs and humanization determinants on FR in HBD process, and to describe visiting policies, structure and modalities of support in ICUs., Methods: A survey was conducted among all the ICUs of the Tuscany Region included in the National Transplant System of the Ministry of Health in Italy. Data on ICUs' general and architectural characteristics, visiting policies and support for families were collected. Baseline characteristics of brain dead certified patients (BDCPs) were retrieved from the Registry of the Regional Transplant Centre., Results: Twenty-nine (93.5%) ICUs out of 31 completed the survey. 330 BDCPs were managed during 2016 in the ICUs studied, with an opposition rate of 33.3%. The following independent factors for opposition emerged: BDCPs' age (OR=1.025; 95% CI: 1.007-1.042; P=0.005), ICU length of stay (LOS) (OR=1.065; 95% CI: 1.005-1.128; P=0.034) and the availability of an ICU team trained in procurement (OR=0.472; 95% CI: 0.275-0.811; P=0.007)., Conclusions: Older age of BDCPs and a prolonged ICU LOS resulted in FR. ICU team specific education emerged as the only modifiable protective factor for oppositions, thus continuous and in-depth training programs for physicians and nurses could be of importance in preventing FR.

Aim: To describe and explain how the concept of family functioning has been used in the targeted sample of health literature on adult family members with illness., Background: Understanding the influence of illness on family functioning is central to the provision of patient- and family-centred care. There is lack of consistency in utilising family functioning which creates confusion about the concept and can interfere with theory development in nursing science. A clear conceptual definition of attributes of family functioning based on concept analysis could act as a guide in the development of instruments to assess family functioning, the design of family-based interventions and their application in clinical practice., Design: Concept analysis., Data Sources: Academic Search Premier, ProQuest Research Library, Family & Society Studies Worldwide, PsycINFO, SocINDEX, PubMed and CINAHL databases were searched within the last 20 years (1997-Dec. 2016) using the terms "family function*" and "patient." Studies of paediatric patients and non-English articles were excluded., Method: Rodgers' evolutionary perspective., Results: The findings suggest that family functioning in the context of illness is defined as family members' ability to maintain cohesive relationships with one another, fulfil family roles, cope with family problems, adjust to new family routines and procedures and effectively communicate with each other., Conclusion: Further research is needed to inform nurses' practice when assessing families or providing patient- and family-centred interventions to support family functioning across different sociocultural and political contexts, and further identification and evaluation of antecedents and consequences regarding family functioning from a nursing perspective., Relevance to Clinical Practice: Having a comprehensive understanding of the attributes, antecedents and consequences of ineffective family functioning can facilitate healthcare providers' ability to identify strengths and potential targets to improve family functioning among their clients., (© 2018 John Wiley & Sons Ltd.)

Purpose The purpose of the study was to describe the perceptions of family members (FM) and people with diabetes (PWD) regarding the frequency and helpfulness of FM support for PWD, including differences among US ethnic groups. Methods The US 2nd Diabetes Attitudes, Wishes and Needs (DAWN2) substudy was a survey of independent samples of 238 adult FM and 540 adult PWD. Outcome measures included ratings by FM and PWD of the frequency and perceived helpfulness of 7 FM support behaviors and composite scores for frequency and helpfulness. Results Ratings of individual FM support behaviors were strongly correlated between FM and PWD but significantly different among behaviors. FM and PWD reported most frequent support for listening, assisting, and doing activities with PWD and reporting PWD was doing poorly least frequently. Both groups reported listening, assisting, and reporting PWD was doing well as most helpful; reporting PWD was doing poorly was least helpful. PWD rated support and helpfulness of most behaviors lower than FM. Composite measures of support frequency and helpfulness were strongly correlated for both FM and PWD. Ethnic minority PWD and FM reported most support behaviors as more frequent and more helpful than non-Hispanic white Americans. Conclusions FM more frequently engage in the support behaviors they view as most helpful, but PWD perceive support to be less frequent and less helpful than FM. FM support differs across ethnic groups, with ethnic minorities reporting higher support frequency and helpfulness. Diabetes care providers should consider ethnic group differences in FM support for PWD.

Background: Little is known about the role of living circumstances to the perception of subjective well-being (SWB) and health of adults with intellectual disability (ID). The aim of the present study was to examine whether living circumstances impact differently on the perception of health and SWB and whether potential differences persist after accounting for other variables (e.g. level of support needs and reporting method)., Methods: Secondary data analysis was undertaken of a large national survey of adults with an ID in England, aged 16 years and over. Participants were identified as living with family (N = 1528) or living out of home (N = 874)., Results: The results of t-test and chi-square revealed that levels of health and SWB were perceived as being higher for people living with family than those living in out-of-home settings. Multiple linear regression analyses fitted to explore factors associated with these reported differences revealed that, when controlling for other variables, living with family was highly associated with reports of better SWB. Multiple logistic regression revealed that whilst the health status of people living with families were perceived as better, this was only true when their support needs were low. Poorest health outcomes were found for people with highest support needs who lived with family., Conclusions: On the whole, the health and well-being of adults living with family were perceived more positively than those living out of home. However, potential health disparities exist for those with high support needs who live with family. Further longitudinal research is needed to explore causes and potential solution to these inequalities., (© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Age is the greatest risk factor for Alzheimer's disease, the most common cause of dementia. The older population in the United States is growing, and within this demographic ethnic and racial diversity is also on the rise. This article introduces Stanford Health Care's Memory Support Program (MSP) as a model for culturally competent dementia care that spans inpatient and outpatient settings. The case study of an African American patient and family dealing with an Alzheimer's disease diagnosis and comorbid conditions is presented and explored to illustrate the MSP model. The authors make recommendations for the implementation of similar continuum of care services in other institutions. As research continues to show, the cultural competence of medical professionals can impact patient quality of care and health outcomes. More research is needed to appropriately support positive outcomes for patients and families of diverse ethnic and racial backgrounds.

Little is known about how families systemically incorporate the work of caring for adolescent and young adult (AYA) survivors of childhood brain tumors who often remain dependent on their families well into adulthood. The primary aim of this study was to develop a typology of family management (FM) patterns for AYA survivors. The secondary aims were to compare them with FM patterns previously described for children with chronic health conditions and to validate the patterns using quantitative and qualitative data. Guided by the Family Management Styles Framework, a sequential, mixed-methods design was used to gather quantitative data from 186 mothers (primary caregivers) and 134 AYA survivors. FM patterns (family focused; somewhat family focused; somewhat condition focused; and condition focused) were identified using cluster analysis of data from the Family Management Measure. FM patterns were found to be similar to those for children with chronic health physical conditions and were significantly related to maternal quality of life, survivor quality of life (health-related quality of life [self- and mother proxy report]), cancer-related variables (treatment intensity, medical late effects), and family functioning in theoretically meaningfully ways. Significant demographic characteristics included private insurance and AYA survivors' engagement in school or employment. Qualitative analysis of data from 45 interviews with mothers from the larger sample provided additional support for and elaborated descriptions of FM patterns. Identification of FM patterns moves the science of family caregiving forward by aggregating data into a conceptually based typology, thereby taking into account the complex intersection of the condition, the family, and condition management. (PsycINFO Database Record, ((c) 2018 APA, all rights reserved).)

Background: In comparison with foreign countries, living-organ transplantations (LOT) have been performed more frequently than dead organ transplants, including brain-dead organ transplantation (BOT) in Japan. This situation has given rise to organ transplantation tourism. Therefore, we clarify laypersons' preferences regarding organ transplantation that are producing the current situation in Japan, to suggest a possible framework for further efforts., Methods: Voluntary completion of a quantitative and anonymous survey was promoted online (a sample size of 1030). The questionnaire had two types of variables concerning demographic characteristics and organ transplantation-related issues., Results: LOT was favored over BOT. However, for willingness to donate to family members, the participants showed a significantly more positive attitude toward brain-dead organ donors (BODs) than living organ donors (LODs). In the evaluation of each transplantation technology, BOT and LOT were positioned in the middle, between transplantation that does not depend on others and the utilization of animal organs., Conclusions: Although LOT was favored over BOT, for participants hypothesized to be in a position to donate and receive organs, BODs received a conversely better reputation than LODs. Our survey and discussion suggest that the present conditions of organ transplantation in Japan might be because there is a lack of deliberation on transplantation tourism and LOT. Therefore, more surveys concerning LOT cases and the implications of avoidance of organs from brain-dead bodies, coupled with more discussions based on these surveys, are necessary to formulate a Japanese transplantation policy for the future., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Amish older adults represent a growing and understudied population whose current health practices, interactions with health care systems outside of their community, and care needs are unknown. Limited research exists on why, when, and how Amish older adults and their caregivers experience health care services outside of their family and community. The purpose of the current study was to describe and explore the perspectives of Amish caregivers caring for older adults and their experiences with health care services outside of their community. A qualitative phenomenological research design was used in combination with a community-based participatory framework with caregivers in a small, rural Amish settlement. Amish caregiving of older adults is a complex phenomenon that is influenced by cultural characteristics. Caregivers place significant cultural value on home caregiving, emphasize the experience as a blessing, and relate misunderstandings between themselves and outside health care providers as significant concerns. [Res Gerontol Nurs. 2018; 11(1):29-38.]., (Copyright 2018, SLACK Incorporated.)

Background: Advance care planning (ACP) is defined in a variety of ways, although it is widely understood as a process undertaken by patients, when they have capacity, to define and communicate their treatment preferences for future care. Few studies have explored the meaning and importance patients place on their ability to participate in directing their medical care., Aim: This study aimed to explore how cancer patients and their family members value autonomy at the end of life (EoL) and understand how this may impact on the way they develop and act on EoL decisions and planning., Methods: Data were collected through in-depth semi-structured interviews with patients and family members of people with cancer. Participants were recruited from metropolitan cancer centres in Sydney, Australia. Interviews were analysed using thematic analysis., Findings: Findings from 11 participant interviews (five patients with cancer and six family members) were organised into four themes: 'the threat of death and cancer'; 'patients seek trust and safety at the end of life'; 'doctors are human and the healthcare system has limitations'; and 'the role of ACP'. Participants experienced cancer and death as a 'threat', to self and others and as something 'uncontrollable'. ACP was seen to have the potential to enhance EoL care by contributing to decreasing uncertainty, enhancing comfort, helping to achieve 'the small things', and in helping the family 'know what to do'. However, participants were, in general, distrustful of documentation and cognisant of uncertainty around medical outcomes and the legal limitations of their capacity to influence care., Conclusions: These findings suggest that models of ACP which are constructed around patients' 'rights' to determine what happens to their bodies may do little to enhance the quality of EoL care, as patients value veracity, trust and comfort at the EoL more than autonomy. Quality EoL care should focus on paying increased attention to the relational and social aspects of care.