A Trauma-informed Approach to Postpartum Care.

Distressing or traumatic perinatal experiences and adverse health outcomes can lead to particularly challenging postpartum experiences for patients and families. By adopting a trauma-informed care approach, the health care team can provide much-needed support, prevent additional harm, and promote healing. We propose practical communication, behavioral, and procedural considerations for integrating trauma-informed care principles into routine postpartum care, with attention to populations that have been marginalized. We see postpartum care as a critical component of holistic patient recovery and an opportunity to facilitate posttraumatic growth so that all families can thrive.

Evaluation of a course for neonatal fellows on providing psychosocial support to NICU families.

Objectives: Families in the Neonatal Intensive Care Unit (NICU) experience significant psychological distress. Fellowship training requires education on mental health issues. No standardized program exists. We evaluated the impact of an online course, combining research with family perspectives, on neonatology fellow knowledge and self-efficacy when emotionally supporting NICU families. Methods: Fellows from 20 programs completed a course covering: (1) Parent Mental Health, (2) Infant Mental Health, (3) Communication, and (4) Comprehensive Mental Health (e.g., discharge, bereavement) with pre- and post-course knowledge and self-efficacy assessments. Results: Fellows (n=91) completed the course and assessments. Pre-course knowledge was similar by year of training (1st: 66.9%; 2nd: 67.2%; 3rd: 67.4%). Mean knowledge and self-efficacy improved between pre- and post-course assessments regardless of training year or prior education for knowledge (d=1.2) (67.1% vs. 79.4%) and for self-efficacy (d=1.2) (4.7 vs 5.2 on 6-point Likert scale). Fellows who gained more knowledge had higher self-efficacy scores at post-test (r = .37). Conclusions: Current neonatal fellowship training under-educates on mental health. An online course improved fellow knowledge and self-efficacy. Our course may be an exemplar for others creating similar curricula. Innovation: An online course enriched by patient perspectives is an effective method of disseminating education around mental health.

Neonatal Nurses' Report of Family-Centered Care Resources and Practices.

BACKGROUND: A paucity of studies describes the prevalence of family-centered care (FCC) practices and resources in US neonatal units. PURPOSE: To identify US prevalence of FCC practices and resources and to identify the largest gaps in resource provision. METHODS: Neonatal nurses completed an online survey through national conferences (eg, NANN educational conference), neonatal organization Web sites (eg, NANN research survey), and social media (eg, NANN and NPA Facebook). Nurses provided demographics and the National Perinatal Association Self-Assessment on Comprehensive Family Support, a 61-item checklist of FCC practices and resources from 6 categories: family-centered developmental care, staff education/support, peer support, palliative care, discharge education, and mental health support. RESULTS: Nurses (n = 103) reported lowest resources for Peer Support and Mental Health Support. About a third had a neonatal intensive care unit parent advisory committee (n = 39; 37.9%). Only 43.7% (n = 45) had necessary amenities for families to stay with their infants. Less than a third felt that mental health professionals were adequately staffed to provide counseling to parents (n = 28; 27.5%). Very few nurses had adequate training on providing parents psychological support (n = 16; 15.8%). More than half (n = 58; 56.3%) stated that all staff receive training in family-centered developmental care. Finally, less than half (n = 42; 40.8%) stated that staff see parents as equal members of the care team. IMPLICATIONS FOR PRACTICE: We demonstrate a consistent and widespread lack of training provided to neonatal staff in nearly every aspect of comprehensive FCC support. IMPLICATIONS FOR RESEARCH: Researchers need to identify unit/organizational interventions that increase adoption and implementation of FCC practices and resources.

Education in Trauma-Informed Care in Maternity Settings Can Promote Mental Health During the COVID-19 Pandemic.

Globally, the pandemic has adversely affected many people's mental health, including pregnant women and clinicians who provide maternity care, and threatens to develop into a mental health pandemic. Trauma-informed care is a framework that takes into account the effect that past trauma can have on current behavior and the ability to cope and can help to minimize retraumatization during health care encounters. The purpose of this article is to highlight the pressing need for perinatal clinicians, including nurses, midwives, physicians, doulas, nurse leaders, and nurse administrators, to be educated about the principles of trauma-informed care so that they can support the mental health of pregnant women, themselves, and members of the care team during the pandemic.

A Safety and Efficacy Comparison of a New Sulfate-Based Tablet Bowel Preparation Versus a PEG and Ascorbate Comparator in Adult Subjects Undergoing Colonoscopy.

INTRODUCTION: A new tablet-based bowel prep for colonoscopy has been developed containing poorly absorbed sulfate salts which act to retain water within the intestinal lumen resulting in a copious diarrhea, thereby cleansing the bowel. This study evaluated the safety and efficacy of these oral sulfate tablets (OST) compared with a US FDA-approved bowel prep solution containing PEG3350, electrolytes, and ascorbate (polyethylene glycol and ascorbate [PEG-EA]). METHODS: Five hundred fifteen adult patients (mean 57y) were enrolled in this single-blind, multicenter, noninferiority study. Subjects were assigned either PEG-EA or OST to be administered in a split-dose regimen starting the evening before colonoscopy. PEG-EA was taken according to its approved labeling (1 L of prep solution with 16 oz. of additional water) in the evening and again in the morning. OST patients took a total of 24 tablets. OST patients were administered 12 tablets in the evening, and the following morning. Patients consumed 16 ounces of water with each dose of 12 tablets and drank an additional 32 oz. of water with each dose. Colonoscopies were performed by blinded investigators. Cleansing efficacy was evaluated globally and segmentally using a 4-point scale (Excellent-no more than small bits of feces/fluid which can be suctioned easily; achieves clear visualization of the entire colonic mucosa. Good-feces and fluid requiring washing and suctioning, but still achieves clear visualization of the entire colonic mucosa. Fair-enough feces even after washing and suctioning to prevent clear visualization of the entire colonic mucosa. Poor-large amounts of fecal residue and additional bowel preparation required). Scores of Good or Excellent were considered to be a success. Safety was assessed by spontaneously reported adverse events, solicited ratings of expected prep symptoms, and laboratory testing. RESULTS: A high rate of cleansing success was seen with OST (92%), which was noninferior to PEG-EA (89%). Only a small proportion of subjects rated their expected gastrointestinal symptoms as severe (<5% for both preps). No clinically significant differences were seen between preps for chemistry and hematology parameters. No serious adverse experiences were reported with OST. DISCUSSION: Sulfate tablets achieved a high level of cleansing in the study, comparable with US FDA-approved preps. OST was noninferior to PEG-EA in this study and achieved significantly more Excellent preps overall and in the proximal colon. The OST prep was well-tolerated, with a similar rate of spontaneously reported adverse experiences to PEG-EA and a low rate of severe expected gastrointestinal symptoms.

Improving Staff Knowledge and Attitudes Toward Providing Psychosocial Support to NICU Parents Through an Online Education Course.

BACKGROUND: Provider-parent communication is a critical determinant of how neonatal intensive care unit (NICU) parents cope, yet staff feel inadequately trained in communication techniques; many parents are not satisfied with the support they receive from hospital providers. PURPOSE: This study evaluated whether NICU staff would demonstrate improved knowledge and attitudes about providing psychosocial support to parents after taking an online course. METHODS: After providing demographic information, staff at 2 NICUs took a 33-item survey both before and after taking a 7-module online course "Caring for Babies and Their Families," and again at 6-month follow-up. Scores (means ± standard deviation) from all time periods were compared and effect sizes calculated for each of the course modules. RESULTS: NICU staff participants (n = 114) included nurses (88%), social workers (7%), physicians (4%), and occupational therapists (1%). NICU staff showed significant improvement in both knowledge and attitudes in all modules after taking the course, and improvements in all module subscores remained significant at the 6-month follow-up mark. Night staff and staff with less experience had lower pretest scores on several items, which improved on posttest. IMPLICATIONS FOR PRACTICE: This course, developed by an interprofessional group that included graduate NICU parents, was highly effective in improving staff knowledge and attitudes regarding the provision of psychosocial support to NICU parents, and in eliminating differences related to shift worked and duration of work experience in the NICU. IMPLICATIONS FOR RESEARCH: Future research should evaluate course efficacy across NICU disciplines beyond nursing, impact on staff performance, and whether parent satisfaction with care is improved.

Enhancing NICU parent engagement and empowerment.

Within the neonatal intensive care unit (NICU), parent engagement and empowerment are of critical importance, particularly when infants are at risk of developing severe complications, such as necrotizing enterocolitis (NEC). Stakeholders within the NICU, including the fragile patients, families, clinicians, staff, and administration, benefit when parents are a valued member of their baby's care team. The 2017 NEC Symposium explored the experiences of families whose infants were impacted by NEC, the barriers to effective partnership, and promising solutions. Parents want to participate in their baby's care, and crave honest, timely, comprehensive information regarding their baby's health and potential outcomes. Clinicians and staff should implement a specific set of Family-Centered Care policies and practices within the NICU to foster a culture of collaboration with parents of premature and fragile infants.

Neonatal Nurses NICU Quality Improvement: Embracing EBP Recommendations to Provide Parent Psychosocial Support.

BACKGROUND: The neonatal intensive care unit (NICU) can be a stressful environment for infants, their families, and the healthcare team. There is an immediate need for neonatal nurses to embrace and translate the new National Perinatal Association recommendations for psychosocial support of NICU parents into clinical practice to demonstrate best practices for infants, their families, and the whole team. PURPOSE: To summarize the current evidence-based practice recommendations and to provide suggestions for team members to develop strategies to adopt and implement them through quality improvement (QI) projects. METHODS: Literature reviews were conducted by the original 6 National Perinatal Association workgroup teams and covered all levels of available evidence (eg, qualitative, quantitative, and clinical research, guidelines, and clinical and parental expertise). Evidence was synthesized to formulate this set of recommendations published in December 2015. We describe their applicability to the vital role of neonatal nurses, while elucidating QI projects that track measurements of change to translate these recommendations into practice. RESULTS: Neonatal nurses are in an ideal position to transform systems of support for NICU parents through the adoption of these recommendations at the bedside, and further to identify areas for QI to enhance implementation. IMPLICATIONS FOR PRACTICE: Neonatal nurses are integral to problem solving and identifying QI strategies for translating these recommendations into NICU clinical practice to improve parent psychosocial support. IMPLICATIONS FOR RESEARCH: This article disseminates evidence and encourages scientific investigation into various methods of supporting emotional health of NICU parents to create better health outcomes.

Preventing Suicide and Self-Harm.

BACKGROUND: Telephone helplines are considered to play an important role in preventing suicide and self-harm among callers in distress. However, inconsistency in the methods of evaluating such services has limited the firm conclusions that can be drawn. AIMS: To evaluate the efficacy of a UK-based helpline from a service user and helpline worker perspective. METHOD: Callers were asked about their mental state at the beginning and end of the call with a short questionnaire. Helpline workers were surveyed about their experiences of using the questionnaire as part of routine service provision. RESULTS: The helpline was successful at reducing suicidal and self-harming ideation. The short questionnaire method was also successfully integrated into routine practice. CONCLUSION: Evaluating the efficacy of helplines can be successfully achieved using the short questionnaire method.

Home care by general practitioners for cancer patients in the last 3 months of life: An epidemiological study of quality and associated factors.

BACKGROUND: Stronger generalist end-of-life care at home for people with cancer is called for but the quality of end-of-life care delivered by general practitioners has been questioned. AIM: To determine the degree of and factors associated with bereaved relatives' satisfaction with home end-of-life care delivered by general practitioners to cancer patients. DESIGN: Population-based mortality followback survey. SETTING/PARTICIPANTS: Bereaved relatives of people who died of cancer in London, United Kingdom (identified from death registrations in 2009-2010), were invited to complete a postal questionnaire surveying the deceased's final 3 months of life. RESULTS: Questionnaires were completed for 596 decedents of whom 548 spent at least 1 day at home in the last 3 months of life. Of the respondents, 55% (95% confidence interval: 51%-59%) reported excellent/very good home care by general practitioners, compared with 78% (95% confidence interval: 74%-82%) for specialist palliative care providers and 68% (95% confidence interval: 64%-73%) for district/community/private nurses. The odds of high satisfaction (excellent/very good) with end-of-life care by general practitioners doubled if general practitioners made three or more compared with one or no home visits in the patient's last 3 months of life (adjusted odds ratio: 2.54 (95% confidence interval: 1.52-4.24)) and halved if the patient died at hospital rather than at home (adjusted odds ratio: 0.55 (95% confidence interval: 0.31-0.998)). CONCLUSION: There is considerable room for improvement in the satisfaction with home care provided by general practitioners to terminally ill cancer patients. Ensuring an adequate offer of home visits by general practitioners may help to achieve this goal.

Do Behavioral Risk Factors for Prediabetes and Insulin Resistance Differ across the Socioeconomic Gradient? Results from a Community-Based Epidemiologic Survey.

To examine whether behavioral risk factors associated with diabetes (diet, BMI, waist circumference, physical activity, and sleep duration) are also related to both prediabetes and insulin resistance (IR), we used data from Boston Area Community Health (BACH) Survey (2010-2012, n = 3155). Logistic and linear regression models were used to test the association of lifestyle factors with prediabetes status, insulin resistance, and prediabetes or insulin resistance. All regression models were stratified by education and income levels (to examine whether risk factors had differential effects across socioeconomic factors) and adjusted for age, gender, race/ethnicity, family history of diabetes, and smoking status. We found that large waist circumference was consistently associated with higher levels of insulin resistance (IR) and increased odds of prediabetes. While the association between large waist circumference and IR was consistent across all levels of SES (P < 0.001), the association between large waist circumference and prediabetes was only statistically significant in the highest socioeconomic strata with odds ratios of 1.68 (95% CI 1.07-2.62) and 1.88 (95% CI 1.22-2.92) for postgraduate degree and income strata, respectively. There was no association between diet, physical activity, sleep duration, and the presence of multiple risk factors and prediabetes or IR within SES strata.

Effects of Oral Stimulus Frequency Spectra on the Development of Non-nutritive Suck in Preterm Infants with Respiratory Distress Syndrome or Chronic Lung Disease, and Preterm Infants of Diabetic Mothers.

The precocial nature of orofacial sensorimotor control underscores the biological importance of establishing ororythmic activity in human infants. The purpose of this study was to assess the effects of comparable doses of three forms of orosensory experience, including a low-velocity spectrally reduced orocutaneous stimulus (NT1), a high-velocity broad spectrum orocutaneous stimulus (NT2), and a SHAM stimulus consisting of a blind pacifier. Each orosensory experience condition was paired with gavage feedings 3x/day for 10 days in the neonatal intensive care unit (NICU). Four groups of preterm infants (N=214), including those with respiratory distress syndrome (RDS), chronic lung disease (CLD), infants of diabetic mothers (IDM), and healthy controls (HI) were randomized to the type of orosensory condition. Mixed modeling, adjusted for gender, gestational age, postmenstrual age, and birth weight, demonstrated the most significant gains in non-nutritive suck (NNS) development among CLD infants who were treated with the NT2 stimulus, with smaller gains realized among RDS and IDM infants. The broader spectrum of the NT2 stimulus maps closely to known response properties of mechanoreceptors in lip, tongue, and oral mucosa and is more effective in promoting NNS development among preterm infants with impaired oromotor function compared to the low-velocity, spectrally reduced NT1 orosensory stimulus.

Place and cause of death in centenarians: a population-based observational study in England, 2001 to 2010.

BACKGROUND: Centenarians are a rapidly growing demographic group worldwide, yet their health and social care needs are seldom considered. This study aims to examine trends in place of death and associations for centenarians in England over 10 years to consider policy implications of extreme longevity. METHODS AND FINDINGS: This is a population-based observational study using death registration data linked with area-level indices of multiple deprivations for people aged ≥100 years who died 2001 to 2010 in England, compared with those dying at ages 80-99. We used linear regression to examine the time trends in number of deaths and place of death, and Poisson regression to evaluate factors associated with centenarians' place of death. The cohort totalled 35,867 people with a median age at death of 101 years (range: 100-115 years). Centenarian deaths increased 56% (95% CI 53.8%-57.4%) in 10 years. Most died in a care home with (26.7%, 95% CI 26.3%-27.2%) or without nursing (34.5%, 95% CI 34.0%-35.0%) or in hospital (27.2%, 95% CI 26.7%-27.6%). The proportion of deaths in nursing homes decreased over 10 years (-0.36% annually, 95% CI -0.63% to -0.09%, p = 0.014), while hospital deaths changed little (0.25% annually, 95% CI -0.06% to 0.57%, p = 0.09). Dying with frailty was common with "old age" stated in 75.6% of death certifications. Centenarians were more likely to die of pneumonia (e.g., 17.7% [95% CI 17.3%-18.1%] versus 6.0% [5.9%-6.0%] for those aged 80-84 years) and old age/frailty (28.1% [27.6%-28.5%] versus 0.9% [0.9%-0.9%] for those aged 80-84 years) and less likely to die of cancer (4.4% [4.2%-4.6%] versus 24.5% [24.6%-25.4%] for those aged 80-84 years) and ischemic heart disease (8.6% [8.3%-8.9%] versus 19.0% [18.9%-19.0%] for those aged 80-84 years) than were younger elderly patients. More care home beds available per 1,000 population were associated with fewer deaths in hospital (PR 0.98, 95% CI 0.98-0.99, p<0.001). CONCLUSIONS: Centenarians are more likely to have causes of death certified as pneumonia and frailty and less likely to have causes of death of cancer or ischemic heart disease, compared with younger elderly patients. To reduce reliance on hospital care at the end of life requires recognition of centenarians' increased likelihood to "acute" decline, notably from pneumonia, and wider provision of anticipatory care to enable people to remain in their usual residence, and increasing care home bed capacity.

Patterns of dignity-related distress at the end of life: a cross-sectional study of patients with advanced cancer and care home residents.

BACKGROUND: To provide effective palliative care in different settings, it is important to understand and identify the sources of dignity-related distress experienced by people nearing the end of life. AIM: To describe and compare the sources of dignity-related distress reported by cancer patients and care home residents. DESIGN: Secondary analysis of merged data. Participants completed the Patient Dignity Inventory (assessing 25 sources of dignity-related distress) and measures of quality of life and depression. SETTING/PARTICIPANTS: A total of 45 adult patients with advanced cancer referred to hospital-based palliative care teams in London, United Kingdom, and 60 residents living in one of 15 care homes in London. RESULTS: Care home residents were older and had poorer functioning. Both groups reported a wide range of dignity-related problems. Although the number or problems reported on the Patient Dignity Inventory was similar for the two groups (mean (standard deviation): 5.9 (5.5) for cancer patients and 4.1 (4.3) for care home residents, p = 0.07), there was a tendency for more cancer patients to report some existential problems. Experiencing physically distressing symptoms and functional limitations were prevalent problems for both groups. Patient Dignity Inventory problems were associated with poorer performance status and functioning for residents, with age and cognitive impairment for cancer patients and with poorer quality of life and depression for both groups. CONCLUSION: Although characteristics of the samples differed, similarities in the dignity-related problems reported by cancer patients and care home residents support research suggesting a common pathway towards death for malignant and non-malignant disease. A wider understanding of the sources of dignity-related distress would help clinicians provide more effective end-of-life care.

Assessing spiritual well-being in residents of nursing homes for older people using the FACIT-Sp-12: a cognitive interviewing study.

PURPOSE: To detect any problems with completion of the Functional Assessment of Chronic Illness Therapy Spiritual Well-being Scale (FACIT-Sp-12), to analyse the causes of such problems and to propose solutions to overcome them. METHODS: We audio-recorded face-to-face interviews with 17 older people living in one of three nursing homes in London, UK, while they completed FACIT-Sp-12. We used cognitive interviewing methods to explore residents' responses. Our analysis was based on the Framework approach to qualitative analysis. We developed the framework of themes a priori. These comprised: comprehension of the question; retrieval from memory of relevant information; decision processes; and response processes. RESULTS: Ten residents completed the FACIT-Sp-12 with no missing data. Most problems involved comprehension and/or selecting response options. Twelve residents had problems with comprehension of at least one question, particularly with abstract concepts (e.g. harmony, productivity), or where there were assumptions inherent in the questions (e.g. they had an illness). When residents had problems comprehending the question, they also found it difficult to select a response. Thirteen residents had difficulties selecting responses (e.g. categories did not reflect their views or were not meaningful in the context of the statement). Some chose not to respond, others responded to the question as they understood it. CONCLUSIONS: The FACIT-Sp-12 could provide valuable insights into the spiritual concerns of nursing home residents; however, data may be neither valid nor reliable if they do not comprehend the questions as intended and respond appropriately. Providing clear and detailed instructions, including definitions of abstract concepts, may improve the validity of this measure for this population.

Maintaining dignity for residents of care homes: a qualitative study of the views of care home staff, community nurses, residents and their families.

This study uses the Framework approach to qualitative analysis to explore and compare the views of residents in care homes for older people, their families and care providers on maintaining dignity. We interviewed 33 care home managers, 29 care assistants, 18 care home nurses, 10 community nurses, 16 residents and 15 members of residents' families. The most prevalent themes were: "independence," and "privacy"; followed by "comfort and care," "individuality," "respect," "communication," "physical appearance" and "being seen as human." Residents and their families sometimes described incidents where a resident's dignity had been compromised. How to help residents maintain dignity and focusing on fostering dignity, can be a starting point for improving the quality of care and quality of life of residents. It is, however, important to remove the gap between the rhetoric of dignity conserving care and the reality experienced by residents in these and other care settings.

Development and evaluation of the feasibility and effects on staff, patients, and families of a new tool, the Psychosocial Assessment and Communication Evaluation (PACE), to improve communication and palliative care in intensive care and during clinical uncertainty.

BACKGROUND: There are widespread concerns about communication and support for patients and families, especially when they face clinical uncertainty, a situation most marked in intensive care units (ICUs). Therefore, we aimed to develop and evaluate an interventional tool to improve communication and palliative care, using the ICU as an example of where this is difficult. METHODS: Our design was a phase I-II study following the Medical Research Council Guidance for the Development and Evaluation of Complex Interventions and the (Methods of Researching End-of-life Care (MORECare) statement. In two ICUs, with over 1900 admissions annually, phase I modeled a new intervention comprising implementation training and an assessment tool. We conducted a literature review, qualitative interviews, and focus groups with 40 staff and 13 family members. This resulted in the new tool, the Psychosocial Assessment and Communication Evaluation (PACE). Phase II evaluated the feasibility and effects of PACE, using observation, record audit, and surveys of staff and family members. Qualitative data were analyzed using the framework approach. The statistical tests used on quantitative data were t-tests (for normally distributed characteristics), the χ2 or Fisher's exact test (for non-normally distributed characteristics) and the Mann-Whitney U-test (for experience assessments) to compare the characteristics and experience for cases with and without PACE recorded. RESULTS: PACE provides individualized assessments of all patients entering the ICU. It is completed within 24 to 48 hours of admission, and covers five aspects (key relationships, social details and needs, patient preferences, communication and information status, and other concerns), followed by recording of an ongoing communication evaluation. Implementation is supported by a training program with specialist palliative care. A post-implementation survey of 95 ICU staff found that 89% rated PACE assessment as very or generally useful. Of 213 family members, 165 (78%) responded to their survey, and two-thirds had PACE completed. Those for whom PACE was completed reported significantly higher satisfaction with symptom control, and the honesty and consistency of information from staff (Mann-Whitney U-test ranged from 616 to 1247, P-values ranged from 0.041 to 0.010) compared with those who did not. CONCLUSIONS: PACE is a feasible interventional tool that has the potential to improve communication, information consistency, and family perceptions of symptom control.

Cognitive interviewing of bereaved relatives to improve the measurement of health outcomes and care utilisation at the end of life in a mortality followback survey.

PURPOSE: The evaluation of end of life care via bereaved relatives is increasingly common. We aimed to improve the measurement of health outcomes and care utilisation at the end of life with this population. METHODS: A cross-sectional study of 20 bereaved relatives of cancer patients was conducted. In phase I, nine underwent a cognitive interview for 65-150 min using five measures: Client Service Receipt Inventory, Life Before Death survey care satisfaction items, Palliative care Outcome Scale (POS), EQ-5D and Core Bereavement Items (CBI). In phase II, items/scales were revised and tested with a further 11 participants. Content analysis explored information processing and errors. RESULTS: All 20 participants understood most questions despite finding them demanding and intense. Judging the accuracy of information and formulating final answers posed more difficulties than recalling facts. Uncertainty and missing data on care utilisation were often due to estimating averages; consequently categories were introduced. Participants perceived the care satisfaction rating scale to be positively biased; a very poor category was added. POS was seen to ask relevant but sometimes difficult questions, whilst the EQ-5D produced fewer missing data but lacked intermediate categories. CBI had terms that participants felt were unfamiliar, unrealistic, unclear or too strong; hence, we changed to the Texas Revised Inventory of Grief (with no problems identified). CONCLUSIONS: Cognitive interviewing helped select measures and make changes that improved the measurement of health outcomes and care utilisation at the end of life with bereaved relatives. The use of both generic and specific health measures and cost measurement in bereavement is encouraged.

To be involved or not to be involved: a survey of public preferences for self-involvement in decision-making involving mental capacity (competency) within Europe.

BACKGROUND: The Council of Europe has recommended that member states of European Union encourage their citizens to make decisions about their healthcare before they lose capacity to do so. However, it is unclear whether the public wants to make such decisions beforehand. AIM: To examine public preferences for self-involvement in end-of-life care decision-making and identify associated factors. DESIGN: A population-based survey with 9344 adults in England, Belgium, Germany, Italy, the Netherlands, Portugal and Spain. RESULTS: Across countries, 74% preferred self-involvement when capable; 44% preferred self-involvement when incapable through, for example, a living will. Four factors were associated with a preference for self-involvement across capacity and incapacity scenarios, respectively: higher educational attainment ((odds ratio = 1.93-2.77), (odds ratio = 1.33-1.80)); female gender ((odds ratio = 1.27, 95% confidence interval = 1.14-1.41), (odds ratio = 1.30, 95% confidence interval = 1.20-1.42)); younger-middle age ((30-59 years: odds ratio = 1.24-1.40), (50-59 years: odds ratio = 1.23, 95% confidence interval = 1.04-1.46)) and valuing quality over quantity of life or valuing both equally ((odds ratio = 1.49-1.58), (odds ratio = 1.35-1.53)). Those with increased financial hardship (odds ratio = 0.64-0.83) and a preference to die in hospital (not a palliative care unit) (odds ratio = 0.73, 95% confidence interval = 0.60-0.88), a nursing home or residential care (odds ratio = 0.73, 95% confidence interval = 0.54-0.99) were less likely to prefer self-involvement when capable. For the incapacity scenario, single people were more likely to prefer self-involvement (odds ratio = 1.34, 95% confidence interval = 1.18-1.53). CONCLUSIONS: Self-involvement in decision-making is important to the European public. However, a large proportion of the public prefer to not make decisions about their care in advance of incapacity. Financial hardship, educational attainment, age, and preferences regarding quality and quantity of life require further examination; these factors should be considered in relation to policy.

Heterogeneity and changes in preferences for dying at home: a systematic review.

BACKGROUND: Home-based models of hospice and palliative care are promoted with the argument that most people prefer to die at home. We examined the heterogeneity in preferences for home death and explored, for the first time, changes of preference with illness progression. METHODS: We searched for studies on adult preferences for place of care at the end of life or place of death in MEDLINE (1966-2011), EMBASE (1980-2011), psycINFO (1967-2011), CINAHL (1982-2011), six palliative care journals (2006-11) and reference lists. Standard criteria were used to grade study quality and evidence strength. Scatter plots showed the percentage preferring home death amongst patients, lay caregivers and general public, by study quality, year, weighted by sample size. RESULTS: 210 studies reported preferences of just over 100,000 people from 33 countries, including 34,021 patients, 19,514 caregivers and 29,926 general public members. 68% of studies with quantitative data were of low quality; only 76 provided the question used to elicit preferences. There was moderate evidence that most people prefer a home death-this was found in 75% of studies, 9/14 of those of high quality. Amongst the latter and excluding outliers, home preference estimates ranged 31% to 87% for patients (9 studies), 25% to 64% for caregivers (5 studies), 49% to 70% for the public (4 studies). 20% of 1395 patients in 10 studies (2 of high quality) changed their preference, but statistical significance was untested. CONCLUSIONS: Controlling for methodological weaknesses, we found evidence that most people prefer to die at home. Around four fifths of patients did not change preference as their illness progressed. This supports focusing on home-based care for patients with advanced illness yet urges policy-makers to secure hospice and palliative care elsewhere for those who think differently or change their mind. Research must be clear on how preferences are elicited. There is an urgent need for studies examining change of preferences towards death.