Healthcare Staffs’ Experiences and Perceptions of Caring for People with Dementia in the Acute Setting: Qualitative Evidence Synthesis

Background Dementia is a global issue, with increasing prevalence rates impacting on health services internationally. People with dementia are frequently admitted to hospital, an environment that may not be suited to their needs. While many initiatives have been developed to improve their care in the acute setting, there is a lack of cohesive understanding of how staff experience and perceive the care they give to people with dementia in the acute setting. Objectives The aim of this qualitative synthesis was to explore health care staffs’ experiences and perceptions of caring for people with dementia in the acute setting. Qualitative synthesis can bring together isolated findings in a meaningful way that can inform policy development. Settings A screening process, using inclusion/exclusion criteria, identified qualitative studies that focused on health care staff caring for people with dementia in acute settings. Participants Twelve reports of nine studies were included for synthesis. Data extraction was conducted on each report by two researchers. Methods Framework synthesis was employed using VIPS framework, using Values, Individualised, Perspective and Social and psychological as concepts to guide synthesis. The VIPS framework has previously been used for exploring approaches to caring for people with dementia. Quality appraisal was conducted using Critical Appraisal Skills Programme (CASP) and NVivo facilitated sensitivity analysis to ensure confidence in the findings. Results Key themes, derived from VIPS, included a number of specific subthemes that examined: infrastructure and care pathways, person-centred approaches to care, how the person interacts with their environment and other patients, and family involvement in care decisions. The synthesis identified barriers to appropriate care for the person with dementia. These include ineffective pathways of care, unsuitable environments, inadequate resources and staffing levels and lack of emphasis on education and training for staff caring for people with dementia. Conclusions This review has identified key issues in the care of people with dementia in the acute setting: improving pathways of care, creating suitable environments, addressing resources and staffing levels and placing emphasis on the education for staff caring for people with dementia. Recommendations are made for practice consideration, policy development and future research. Leadership is required to instil the values needed to care for this client group in an effective and personcentred way. Qualitative evidence synthesis can inform policy and in this case, recommends VIPS as a suitable framework for guiding decisions around care for people with dementia in acute settings.

The role of emotions in value creation for families in pediatric health care

The purpose of this study was to analyze emotions related to a child’s critical illness from the perspective of the family and discuss the link those emotions might form with value creation. High quality service is of paramount importance in hospital care, especially when a child is diagnosed with critical illness. Through the analysis of patient family emotions and their triggers, the study was aiming to deepen the understanding of value creation for customer. Therefore, the research sought to find answers to the following three sub-questions: 1. What are the emotions experienced? 2. What triggers them? 3. How are the emotions linked to amelioration or aggravation of value for patient and family? The theoretical background of this research is built on two core concepts: emotions and value creation. As both concepts are wide and multifaceted, the research concentrates on viewing emotions from the applicable cognitive angle, identifying and categorizing emotions in a general level. Value creation is studied from the service perspective, discussing the possible relations between emotions and value creation. Moreover, the suitability of views regarding customer value co-creation to health care encounters is analyzed. Qualitative approach was selected as the most appropriate methodology for conducting the empirical research. The empirical data was collected from public blogs, for which a total of 18 blogs were reviewed. Five blogs were selected for the analysis, which had the intent of identifying the emotions experienced by patient families and deepening the knowledge of their role in value creation during health care service encounters. The empirical study of this research discovered a wide range of positive and negative emotions, which denotes that a severe life situation does not prevent the feeling of positive emotions. Furthermore, by combining the empirical findings to the theoretical background, this study concludes that recognizing and treating the patient family as a partner and value creator is essential. The high quality technical aspect of care is vital, but it is not the sole attribute for service quality, as the interpersonal communication plays a large role in the customer’s overall assessment of the health care performance. The patients and their families largely evaluate the service encounter based on their perceptions, thus emotions play a significant role. Depending on the service experience, value maybe created or destructed. Hence, this study posits emotion at the core of the service encounter, indicating towards the importance of active assessment of customer perceptions and the recognition of the emotional states

The pre-reproductive period in a tropical bird: parental care, dispersal, survival, and avian life histories

The period between offspring birth and recruitment into the breeding population is considered one of the least understood components of animal life histories. Yet, examining this period is essential for studies of parental care, dispersal, demography, and life histories. Studies of the pre-reproductive period are particularly few in tropical regions, where the organization of life histories are predicted to differ compared to northern hemisphere species. For my dissertation I used radio-telemetry, mark-resighting, and field observations to study the pre-reproductive period in a Neotropical bird, the western slaty-antshrike (Thamnophilus atrinucha), in Panama. First, I found that parental care after offspring left the nest (the post-fledging period) was greater than care during the nestling period. Prolonged care resulted in a clear trade-off for parents as they did not nest again until fledglings from the first brood were independent. Parents fed offspring for a prolonged duration during the post-fledging period and higher post-fledging survival was observed compared to many northern hemisphere species. Second, I observed that offspring that remained with parents for longer periods on the natal territory had higher survival both while on the natal territory and after dispersal compared to those dispersing earlier. Parental aggression towards offspring increased with offspring age and offspring dispersed earlier when parents renested. Contrary to other family living species, only a small proportion of antshrike offspring remained on the natal territory until the following year and all dispersed to float. Floating is when juveniles wander within other breeding pairs’ territories. These results suggest that the benefits of delayed dispersal declined with offspring age and with renesting by parents. Third, I observed that survival during the dependent period and first year was greater in slaty antshrikes compared to that of northern hemisphere species. Pre-reproductive survival relative to adult survival was equal or greater than that observed in northern hemisphere species. The date offspring left the nest, mass, and age at dispersal influenced offspring survival, whereas offspring sex and year did not. Relatively high survival during the pre-reproductive period coupled with comparatively low annual productivity clarifies how many tropical species achieve replacement. High juvenile survival appears to obtain from extended post-fledging parental care, delayed dispersal, low costs of dispersal, and a less seasonal environment. Lastly, I experimentally manipulated begging at the nest to examine changes in parental behavior. Under elevated begging, parents increased provisioning rates and reduced the time between arrival to the nest and feeding of nestlings, potentially to reduce begging sounds. Furthermore, parents switched to preferentially feed the closest offspring during the begging treatment. This suggests parents either allowed sibling competition to influence feeding decisions, or feeding the closer nestling increased the efficiency of provisioning. In summary, I found that slaty antshrikes have delayed age at reproduction, higher post-fledging and first year survival, extended post-fledging parental care, equal or greater pre-reproductive survival relative to adult survival, and delayed dispersal compared to many northern hemisphere passerines. These results suggest that this tropical species has a strategy of high investment into few offspring. Furthermore, reproductive effort is equal or greater at least in slaty antshrikes compared to northern hemisphere species, suggesting that the latitudinal gradient in clutch size is not explained by a gradient in reproductive effort.

G181(P) Evaluation of a new e-health intervention in neonatal care : perspectives of parents and health professionals.

Aim This paper will report findings from the first phase of an evaluation of a new e-health intervention designed to allow mothers to ‘see’ their baby in neonatal care (NNU) when they are not able to be with them. The intervention, MyLittleOne, involves a web-camera being placed over the incubator in NNU, which transmits a real-time video wirelessly to a coupled tablet device at the mother’s bedside. Guided by the MRC Framework for the Development and Evaluation of Healthcare Interventions (MRC, 2008), the aim was to explore parent and professional views of the technology and make recommendations for its future development, use and evaluation. Methods A qualitative approach was adopted, guided by a critical realist perspective (McEvoy and Richards, 2003). The study took place in a Level 3 NNU in Scotland. Participants were recruited purposively and included parents (n = 33) and a range of health professionals working in neonatal and postnatal care (n = 21). The data were collected during semi-structured individual, paired and small group interviews and were analysed thematically using NVivo v10. Results The majority of parents and professionals spoke positively about MyLittleOne. Perceptions were that: use of the technology assisted bonding and responsiveness; it promoted the recovery process following birth; and, for mothers who wished to breast-feed, being able to see their baby on the tablet device encouraged the ‘let-down’ reflex. An additional benefit was that siblings and others who may not be able to visit the NNU were able to see the baby. In contrast, for a small number of mothers, viewing their baby remotely appeared to increase their levels of anxiety. Switching off the camera during a medical procedure and back on after the procedure was completed was found to be problematic, at times and in different ways, for both parents and professionals. Conclusions Findings from this preliminary evaluation will guide future developments of the technology, including its use in family homes following the mother’s discharge. The findings will also inform the design of a feasibility study and subsequent RCT to assess the impact of MyLittleOne on a range of psychological indicators of postnatal adjustment.

Priorities for future intensive care research in the UK: results of a James Lind Alliance Priority Setting Partnership.

This James Lind Alliance (JLA) Priority Setting Partnership aimed to identify and prioritise unanswered questions about adult intensive care that are important to people who have been critically ill, their families, and the health professionals who care for them. Consensus techniques (modified Delphi and Nominal Group) were used to generate suggestions using online and postal surveys. Following verification and iterative editorial review, research topics were constructed from these suggestions. These topics were presented in a second online and postal survey for rating. A Nominal Group of 21 clinicians, patients and family representatives subsequently met to rank the most important research topics and produce a prioritised list. The project was coordinated by a representative Steering Group and independently overseen by the JLA. The initial survey and review of the literature generated over 1,300 suggestions. Preliminary editing and verification permitted us to encapsulate these suggestions within 151 research topics. Iterative review by members of the Steering Group produced 37 topic statements, subsequently rated by participants. Using the mode to determine importance, 19 topics were presented to the group from which a ‘top three’ intensive care research priorities were identified and a further nine topics were prioritised. By applying and adapting the JLA methodology to focus on an area of care rather than to a single disease, we have provided a means to ensure that patients, their families and professionals materially contribute to the prioritisation of intensive care research in the UK.

Exploring Health in Military Families: Does Continuity of Care Influence Patient Satisfaction?

To ensure mission-readiness for military members, support for their families is essential. Military family health and health care satisfaction has been a neglected area of study in this population. Satisfaction can be defined in terms of patient-, provider-, and practice-level factors and is influenced by continuity of care, which is often poor in transient military populations. Using a modified patient satisfaction survey, this study found that both the number of moves and assigned providers were significantly associated with continuity of care in military spouses. Further, continuity of care was a significant predictor of satisfaction with military health care.

PERCEPTIONS AND EXPERIENCES OF FAMILY CAREGIVERS OF BEDRIDDEN ELDERLY

Objective: To know the perceptions and experiences of family caregivers of bedridden elderly. Methods: A qualitative descriptive exploratory study conducted in January 2015 with four caregivers in a Family Health Center in the municipality of Araripe, CE. Data were collected through semi-structured interviews and the information was organized using the content analysis technique. A total of three categories emerged from the analysis of the reports of caregivers: the dependence process of the elderly; daily difficulties experienced by the caregiver; and satisfaction with the home care service. Results: The dependence process of the elderly took place as a consequence of pathological processes such as neoplasm, cerebrovascular accident and dementia. However, it could also be observed that physiological phenomena – common in old age – can also make individuals dependent on caregivers. As to the difficulties faced by the caregivers, they reported the need for greater involvement by the family, given that the centralization of work generates an overload and hence affects the care of the elderly. Teamwork in the home care context is fundamental, given that it allows a complementary and comprehensive care to the ledrely/caregiver binomial. Conclusion: Healthy aging is a major challenge to be overcome given that the development of a healthy lifestyle is difficult in all social strata. It is necessary to improve home care in order to provide support to caregivers so that the quality of life of bedridden elderly and caregivers is improved.

Epidemiology and genetic architecture of blood pressure: a family based study of Generation Scotland

Hypertension is a major risk factor for cardiovascular disease and mortality, and a growing global public health concern, with up to one-third of the world’s population affected. Despite the vast amount of evidence for the benefits of blood pressure (BP) lowering accumulated to date, elevated BP is still the leading risk factor for disease and disability worldwide. It is well established that hypertension and BP are common complex traits, where multiple genetic and environmental factors contribute to BP variation. Furthermore, family and twin studies confirmed the genetic component of BP, with a heritability estimate in the range of 30-50%. Contemporary genomic tools enabling the genotyping of millions of genetic variants across the human genome in an efficient, reliable, and cost-effective manner, has transformed hypertension genetics research. This is accompanied by the presence of international consortia that have offered unprecedentedly large sample sizes for genome-wide association studies (GWASs). While GWAS for hypertension and BP have identified more than 60 loci, variants in these loci are associated with modest effects on BP and in aggregate can explain less than 3% of the variance in BP. The aims of this thesis are to study the genetic and environmental factors that influence BP and hypertension traits in the Scottish population, by performing several genetic epidemiological analyses. In the first part of this thesis, it aims to study the burden of hypertension in the Scottish population, along with assessing the familial aggregation and heritialbity of BP and hypertension traits. In the second part, it aims to validate the association of common SNPs reported in the large GWAS and to estimate the variance explained by these variants. In this thesis, comprehensive genetic epidemiology analyses were performed on Generation Scotland: Scottish Family Health Study (GS:SFHS), one of the largest population-based family design studies. The availability of clinical, biological samples, self-reported information, and medical records for study participants has allowed several assessments to be performed to evaluate factors that influence BP variation in the Scottish population. Of the 20,753 subjects genotyped in the study, a total of 18,470 individuals (grouped into 7,025 extended families) passed the stringent quality control (QC) criteria and were available for all subsequent analysis. Based on the BP-lowering treatment exposure sources, subjects were further classified into two groups. First, subjects with both a self-reported medications (SRMs) history and electronic-prescription records (EPRs; n =12,347); second, all the subjects with at least one medication history source (n =18,470). In the first group, the analysis showed a good concordance between SRMs and EPRs (kappa =71%), indicating that SRMs can be used as a surrogate to assess the exposure to BP-lowering medication in GS:SFHS participants. Although both sources suffer from some limitations, SRMs can be considered the best available source to estimate the drug exposure history in those without EPRs. The prevalence of hypertension was 40.8% with higher prevalence in men (46.3%) compared to women (35.8%). The prevalence of awareness, treatment and controlled hypertension as defined by the study definition were 25.3%, 31.2%, and 54.3%, respectively. These findings are lower than similar reported studies in other populations, with the exception of controlled hypertension prevalence, which can be considered better than other populations. Odds of hypertension were higher in men, obese or overweight individuals, people with a parental history of hypertension, and those living in the most deprived area of Scotland. On the other hand, deprivation was associated with higher odds of treatment, awareness and controlled hypertension, suggesting that people living in the most deprived area may have been receiving better quality of care, or have higher comorbidity levels requiring greater engagement with doctors. These findings highlight the need for further work to improve hypertension management in Scotland. The family design of GS:SFHS has allowed family-based analysis to be performed to assess the familial aggregation and heritability of BP and hypertension traits. The familial correlation of BP traits ranged from 0.07 to 0.20, and from 0.18 to 0.34 for parent-offspring pairs and sibling pairs, respectively. A higher correlation of BP traits was observed among first-degree relatives than other types of relative pairs. A variance-component model that was adjusted for sex, body mass index (BMI), age, and age-squared was used to estimate heritability of BP traits, which ranged from 24% to 32% with pulse pressure (PP) having the lowest estimates. The genetic correlation between BP traits showed a high correlation between systolic (SBP), diastolic (DBP) and mean arterial pressure (MAP) (G: 81% to 94%), but lower correlations with PP (G: 22% to 78%). The sibling recurrence risk ratio (λS) for hypertension and treatment were calculated as 1.60 and 2.04 respectively. These findings confirm the genetic components of BP traits in GS:SFHS, and justify further work to investigate genetic determinants of BP. Genetic variants reported in the recent large GWAS of BP traits were selected for genotyping in GS:SFHS using a custom designed TaqMan® OpenArray®. The genotyping plate included 44 single nucleotide polymorphisms (SNPs) that have been previously reported to be associated with BP or hypertension at genome-wide significance level. A linear mixed model that is adjusted for age, age-squared, sex, and BMI was used to test for the association between the genetic variants and BP traits. Of the 43 variants that passed the QC, 11 variants showed statistically significant association with at least one BP trait. The phenotypic variance explained by these variant for the four BP traits were 1.4%, 1.5%, 1.6%, and 0.8% for SBP, DBP, MAP, and PP, respectively. The association of genetic risk score (GRS) that were constructed from selected variants has showed a positive association with BP level and hypertension prevalence, with an average effect of one mmHg increase with each 0.80 unit increases in the GRS across the different BP traits. The impact of BP-lowering medication on the genetic association study for BP traits has been established, with typical practice of adding a fixed value (i.e. 15/10 mmHg) to the measured BP values to adjust for BP treatment. Using the subset of participants with the two treatment exposure sources (i.e. SRMs and EPRs), the influence of using either source to justify the addition of fixed values in SNP association signal was analysed. BP phenotypes derived from EPRs were considered the true phenotypes, and those derived from SRMs were considered less accurate, with some phenotypic noise. Comparing SNPs association signals between the four BP traits in the two model derived from the different adjustments showed that MAP was the least impacted by the phenotypic noise. This was suggested by identifying the same overlapped significant SNPs for the two models in the case of MAP, while other BP traits had some discrepancy between the two sources

Experiences of care and adjustment to change in caregivers of children with autoimmune encephalitis: an interpretative phenomenological analysis

Background: Autoimmune encephalitis (AE) occurs in response to an antibody-mediated central nervous system disease and can lead to significant neurodisability. Prior research on family adjustment has described a reciprocal relationship between caregiver functioning, distress and clinical outcome in parents and children with encephalitis. There has been no previous research exploring the experiences of caregivers with a child with AE. Aims: To explore the perspectives of parents and/or caregivers with a child diagnosed with AE regarding (i) their own adjustment from hospital admission to post-discharge, and (ii) their experiences of care and service provision. Methods: A purposive sampling approach was used. Five parents of children with AE participated in a semi-structured interview exploring their experiences of caring for their child and service provision during acute care and post-discharge. Interpretative Phenomenological Analysis (IPA) was used to analyse the transcripts. Main findings and conclusions: Four shared super-ordinate themes with related subthemes emerged: (a) uncertainty, (b) managing our recovery, (c) changes in my child, (d) experiences of service provision. Participants reported emotional distress, often underpinned by recurrent experiences of uncertainty, and ‘loss’ of the previous child, and mediated by coping strategies and social support. While an overall positive experience of inpatient services was reported, parents often perceived post-discharge services as lacking in co-ordination, communication and formal follow-up, resulting in unmet support needs. Implications and recommendations for services, practitioners and future research are discussed.

Orthodox versus unorthodox care: A qualitative study on where rural women seek healthcare during pregnancy and childbirth in Southwest, Nigeria

Introduction Utilization of orthodox health facilities for maternal health services is determined by factors operating at the individual, household, community and state level. The prevalence of small family norm is one of the identified variables operating within the community which influences the decision of where to access care (orthodox/traditional). The objective of the study was to determine the use of orthodox versus unorthodox maternity healthcare and determinants among rural women in southwest Nigeria. Methods A qualitative study was done and involved three focus group discussions. A semi-structured interview guide was used to collect information from women of reproductive age group within a rural Local Government Area in Lagos state. Results Most of the women access some form of healthcare during pregnancy, orthodox, unorthodox or both. Those who patronize both services concurrently do so to benefit from the two as each has some unique features such as herbal concoctions for traditional, ultrasound and immunization of babies for orthodox. Traditional belief exerts a strong influence on decision of where to access maternal healthcare services. Actual place of delivery is determined by individual and household factors including financial resources. Conclusion Rural women utilize one or both orthodox and unorthodox maternal health services for different reasons. Ward Development Committees should be strengthened so as to reach the communities, educate and convince women to dispel myths which limit their use of orthodox care. Training and monitoring of Traditional Birth Attendants (TBAs) are vital to eliminate harmful practices. We also recommend improved financial access to orthodox healthcare.

The patient-provider relationship and antenatal care uptake at two referral hospitals in Malawi: A qualitative study

Background In post-stroke patients, impairment of quality of life (QOL) has been associated with functional impairment, age, anxiety, depression, and fatigue. Good social support, higher education, and better socioeconomic status are associated with better QOL among stroke survivors. In Africa, studies from Nigeria and Tanzania have reported on post-stroke QOL. Background Approximately 90% of Malawian women attend antenatal care at least once during their pregnancies; however, most mothers first present during months five and six and do not adhere to the World Health Organization’s recommended four visits. The objective of this study was to explore the role the patient-provider relationship has on antenatal care uptake. Methods A qualitative study, consisting of interviews with 20 urban pregnant mothers and eight health workers, was conducted from September to December 2014. Two large tertiary care hospitals in the Central and Southern regions of Malawi were selected as study sites. Results Several factors influenced antenatal care attendance. Significant barriers reported included the patient-provider relationship, clinic wait times, family and friend support, distance from home to the clinic, transportation, cost, and number of visits. The patient-provider relationship appears to have a large impact on antenatal clinic participation. Mothers indicated that health workers often mistreat or demean them during visits. Additionally, health workers revealed that, due to staff shortages, patients often do not receive the care they deserve. Conclusions The results of this study suggest that, in addition to other factors, healthcare provider attitudes influence antenatal clinic attendance. Improving the patient-provider relationship may increase antenatal clinic attendance and decrease pregnancy complications during pregnancy. Professional development opportunities and quality improvement programmes are would help improve patient care and health outcomes while the continued staff shortages in the country are addressed.

Impact of a fall prevention program in the Internal Medicine wards of a tertiary care university hospital

Objective: To determine whether a falls prevention program reduces the incidence of falls within a hospital. Materials and methods: Each patient admitted to the Internal Medicine ward was classiied into a risk category (high, medium, low) according to the scale of J.H. Downton, and then various general and speciic measures were applied by risk group. Interventions included appointments, teaching materials, and training of medical staff and family. Furthermore, a registration system was developed that allowed adverse event fe edback to the program and identiicat ion of the causes of the fall. The SPSS version 20.0 was used for the data analysis. Descriptive analysis was used for quantitative variables, and qualitative variables were expressed as proportions. To compare the rate of pre- and post-program implementation falls, x 2 was used, with a  = 0.05 determining a signiicant statistical value. Results: Since the implementation of the program, the rate of falls per 1000 days/patient decreased from 1.9 in 2007 to 0.67 in the period 2008-2013, representing a decrease of the rate of falls of up to 70%, with a statistically signiicant difference (P=.02). Conclusions: The implementation of a falls prevention program is an effective tool and reduces the rate and complications associated with them.

Composite Indicators for the Family Change: ‘Familism' vs ‘Individualism' in the International Context

The aim of this paper is to propose a composite indicator to measure ‘familism’, conformed by two main dimensions: values on one hand (duty to take care of the family, importance of the family, sacrifices for the family...) and behaviours, on the other (predominance of married couples instead of cohabitant couples, high frequency of contact among members, family support…). In contrast to this idea of ‘familism’ we find that of individualism, that defends the independence of family members, tolerance to new family models, cohabitation instead of marriage,… , that implies less frequency of interaction among relatives and more governmental intervention towards children and elderly care. We observe that a higher degree of ‘familism’ does not always match with a lower degree of individualism when both dimensions, attitudes and behaviours, are considered. For instance, we find countries which are individualist in values but not in behaviours (such as Spain), whilst others, such as Japan, are ‘familist’ both in values and behaviours and finally, others, such as Sweden, are individualist with regards to both perspectives. We propose two different methodological approaches to the question. First, we use microdata from the Family, Work and Gender Roles module of the International Social Survey Programme-ISSP (years 1994, 2002 and 2012), in which 45 countries have participated. Information for the three rounds is collected for 17 countries with very different family values and welfare systems (for instance, Sweden, Japan, Russia, Spain, United Kingdom or the United States). From this data source, we create a first index on familism that can be related to individual sociodemographic characteristics. Second, we complete it through the inclusion of macro data (such as the divorce rate per country), in order to refine comparison at a country level by adding new variables to the previous index.

Composite Indicators for the Family Change: ‘Familism' vs ‘Individualism' in the International Context

The aim of this paper is to propose a composite indicator to measure ‘familism’, conformed by two main dimensions: values on one hand (duty to take care of the family, importance of the family, sacrifices for the family...) and behaviours, on the other (predominance of married couples instead of cohabitant couples, high frequency of contact among members, family support…). In contrast to this idea of ‘familism’ we find that of individualism, that defends the independence of family members, tolerance to new family models, cohabitation instead of marriage,… , that implies less frequency of interaction among relatives and more governmental intervention towards children and elderly care. We observe that a higher degree of ‘familism’ does not always match with a lower degree of individualism when both dimensions, attitudes and behaviours, are considered. For instance, we find countries which are individualist in values but not in behaviours (such as Spain), whilst others, such as Japan, are ‘familist’ both in values and behaviours and finally, others, such as Sweden, are individualist with regards to both perspectives. We propose two different methodological approaches to the question. First, we use microdata from the Family, Work and Gender Roles module of the International Social Survey Programme-ISSP (years 1994, 2002 and 2012), in which 45 countries have participated. Information for the three rounds is collected for 17 countries with very different family values and welfare systems (for instance, Sweden, Japan, Russia, Spain, United Kingdom or the United States). From this data source, we create a first index on familism that can be related to individual sociodemographic characteristics. Second, we complete it through the inclusion of macro data (such as the divorce rate per country), in order to refine comparison at a country level by adding new variables to the previous index.

"I’ll call you when we are ready" (One family’s experience of critical care and end of life decision making)

The purpose of this paper is to explore through narrative accounts one family's expérience of critical care, after the admission of a family member to an Intensive Care Unit (ICU) and their subséquent death five weeks later. Numerous studies support the need for effective communication and clear information to be given to the family. In this instance it was évident from their stories that there were numerous barriers to communication, including language and a lack of insight into the needs of the family. Many families do not understand the complexities of nursing care in an ICU so lack of communication by nursing staff was identified as uncaring behavior and encounters. Facilitating a family's proximity to a dying patient and encouraging them to participate in care helps to maintain some sensé of personal control. Despite a commitment to involving family members in care, which was enshrined in the Unit Philosophy, relatives were banished to the waiting room for hours. They experienced feelings of powerlessness and helplessness as they waited with other relatives for news following investigations or until 'the doctor had completed his rounds'. Explanations of "we must make 'the patient' comfortable" was no consolation for those who wished to be involved in care. The words "I'il call you when we are ready" became a mantra to the forgotten families who waited patiently for those with power to admit them to the ICU. Implications are this family felt they were left alone to cope with the traumatic expériences leading up to and surrounding the death. They felt mainly supported by the priest, who not only administered the last rites but provided spiritual support to the family and dealt sensitively with many issues. Paternalism in décision making when there is a moral obligation to ensure that discussions on end of life dilemmas are an inclusive process with families, doctors, nurses was not understood, therefore it caused conflict within the family over EOL décision making. The family felt that the opportunity to share expériences through telling and retelling their stories would enable them to reconfigure the past and create purpose in the future.