Family satisfaction in the intensive care unit: cross-cultural adaptation of a questionnaire

PURPOSE: Family needs and expectations are often unmet in the intensive care unit (ICU), leading to dissatisfaction. This study assesses cross-cultural adaptability of an instrument evaluating family satisfaction in the ICU. MATERIALS AND METHODS: A Canadian instrument on family satisfaction was adapted for German language and central European culture and then validated for feasibility, validity, internal consistency, reliability, and sensitivity. RESULTS: Content validity of a preliminary translated version was assessed by staff, patients, and next of kin. After adaptation, content and comprehensibility were considered good. The adapted translation was then distributed to 160 family members. The return rate was 71.8%, and 94.4% of questions in returned forms were clearly answered. In comparison with a Visual Analogue Scale, construct validity was good for overall satisfaction with care (Spearman rho = 0.60) and overall satisfaction with decision making (rho = 0.65). Cronbach alpha was .95 for satisfaction with care and .87 for decision-making. Only minor differences on repeated measurements were found for interrater and intrarater reliability. There was no floor or ceiling effect. CONCLUSIONS: A cross-cultural adaptation of a questionnaire on family satisfaction in the ICU can be feasible, valid, internally consistent, reliable, and sensitive.

Factors related to treatment intensity in Swiss primary care

BACKGROUND: Questions about the existence of supplier-induced demand emerge repeatedly in discussions about governing Swiss health care. This study therefore aimed to evaluate the interrelationship between structural factors of supply and the volume of services that are provided by primary care physicians in Switzerland. METHODS: The study was designed as a cross-sectional investigation, based on the complete claims data from all Swiss health care insurers for the year 2004, which covered information from 6087 primary care physicians and 4.7 million patients. Utilization-based health service areas were constructed and used as spatial units to analyze effects of density of supply. Hierarchical linear models were applied to analyze the data. RESULTS: The data showed that, within a service area, a higher density of primary care physicians was associated with higher mortality rates and specialist density but not with treatment intensity in primary care. Higher specialist density was weakly associated with higher mortality rates and with higher treatment intensity density of primary care physicians. Annual physician-level data indicate a disproportionate increase of supplied services irrespective of the size of the number of patients treated during the same year and, even in high volume practices, no rationing but a paradoxical inducement of consultations occurred. The results provide empirical evidence that higher densities of primary care physicians, specialists and the availability of out-patient hospital clinics in a given area are associated with higher volume of supplied services per patient in primary care practices. Analyses stratified by language regions showed differences that emphasize the effect of the cantonal based (fragmented) governance of Swiss health care. CONCLUSION: The study shows high volumes in Swiss primary care and provides evidence that the volume of supply is not driven by medical needs alone. Effects related to the competition for patients between primary care physicians, specialists and out-patient hospital clinics and an association with the system of reimbursing services on a fee-for-service basis can not be excluded.

Defining Goals and Learning Objectives for a Longitudinal Clerkship in the Complex Context of Health Care

In autumn 2007 the Swiss Medical School of Berne (Switzerland) implemented mandatory short-term clerkships in primary health care for all undergraduate medical students. Students studying for a Bachelor degree complete 8 half-days per year in the office of a general practitioner, while students studying for a Masters complete a three-week clerkship. Every student completes his clerkships in the same GP office during his four years of study. The purpose of this paper is to show how the goals and learning objectives were developed and evaluated. Method:A working group of general practitioners and faculty had the task of defining goals and learning objectives for a specific training program within the complex context of primary health care. The group based its work on various national and international publications. An evaluation of the program, a list of minimum requirements for the clerkships, an oral exam in the first year and an OSCE assignment in the third year assessed achievement of the learning objectives. Results: The findings present the goals and principal learning objectives for these clerkships, the results of the evaluation and the achievement of minimum requirements. Most of the defined learning objectives were taught and duly learned by students. Some learning objectives proved to be incompatible in the context of ambulatory primary care and had to be adjusted accordingly. Discussion: The learning objectives were evaluated and adapted to address students’ and teachers’ needs and the requirements of the medical school. The achievement of minimum requirements (and hence of the learning objectives) for clerkships has been mandatory since 2008. Further evaluations will show whether additional learning objectives need to be adopte

Orphan Care: An Introduction

This collection aims to cast light on the social work profession and its care for orphans in middle and low income nations. Four countries are profiled in this work, and the focus in each portrayal is the work done by professionals as well as the socio-political context of this work in the area of care for orphaned children. As will be argued later, both our international perspective and our understanding of the needs and care of orphans around the world are limited in the English language social work literature. This work represents an attempt to address these limitations. I whole-heartedly embrace Watts’ urgent call,

Orphan Care: An Introduction

This collection aims to cast light on the social work profession and its care for orphans in middle and low income nations. Four countries are profiled in this work, and the focus in each portrayal is the work done by professionals as well as the socio-political context of this work in the area of care for orphaned children. As will be argued later, both our international perspective and our understanding of the needs and care of orphans around the world are limited in the English language social work literature. This work represents an attempt to address these limitations. I whole-heartedly embrace Watts’ urgent call, “International and comparative social work and social welfare have some catching up to do…In order to seek answers, we need to recognize we have much to learn from each other. We have much to learn about how social work is practiced in countries different from our own. We have much to learn about the similarities and the differences in social work in various countries. Our learning about its many facets and expressions can challenge our own interpretations of reality and our own truth claims and move us to new ways of thinking and new ways of understanding” (1997, p. 5).

Skin and mucosa care in systemic sclerosis - patients' and family caregivers' experiences and expectations of a specific education programme: a qualitative study

BACKGROUND Skin and mucosal manifestations such as skin thickening, pruritus, reduced microvascular circulation, digital lesions, appearance-related changes, and dryness of the eyes and mucosa are common in systemic sclerosis (SSc). A specific skin and mucosa care education programme for patients and their family caregivers should increase their self-efficacy and improve coping strategies. AIMS The aims of this qualitative study were to explore the participants' experiences of both everyday life with skin and mucosal manifestations and the programme itself, while identifying unmet needs for programme development. METHODS Narrative interviews were conducted with eight SSc patients and two family caregivers of individuals with SSc. Using qualitative content analysis techniques, the transcribed interviews were systematically summarized and categories inductively developed. RESULTS The findings illustrated participants' experiences of skin and mucosal symptoms and revealed them to be experts in finding the right therapy mix alone (before diagnosis) and also in collaboration with health professionals (after diagnosis). Participants emphasized that the programme gave them useful education on skin and mucosa care. They described how they had to cope alone with the lack of information on pathophysiology, people's reactions, and the impact on their family and working lives. Nevertheless, participants said that they maintained a positive attitude by not dwelling on future disabilities. CONCLUSIONS Patients and family caregivers benefited from the individualized and SSc-specific education on skin and mucosa care. Future improvements to the programme should focus on imparting understandable information on SSc pathophysiology, dealing with disfigurement and seeking reliable disease information, as well as facilitating peer support.

Commentary on “Connecting the Dots: Families and Children with Special Needs in a Rural Community”

Starks et al. discuss an evaluation of educational initiatives to improve rural systems of care for children with special needs. Akin to the medical home neighborhood concept, building a holistic medical "village" entails improving collaboration, sharing accountability, and helping families to navigate the health care system. The article suggests that policymakers should include patient experiences of care in program evaluation, and they should build a community infrastructure for shared information and efficient communication.

Ordinary Families -Extraordinary Care Giving

Children with severe emotional problems often have multiple needs that require disparate services including child welfare, juvenile justice, health, mental health, substance abuse, and mental retardation (Stroul, 1996). However, the primary care giving responsibilities for these youngsters still remain with their families. It is the family who shelters and clothes them; provides guidance, affection, recreation, nurturing; gets them to appointments with doctors and therapists and to school dayin- and-day-out, year after year (Lourie, 1995). Despite the invaluable and irreplaceable care provided by families, they are often maligned by a system which characterizes them as having their own problems and inadequacies. The purpose of this research is to learn more about the strengths of families who care for children with severe emotional disabilities (SED). This exploratory descriptive study made use of focus groups attended by parents who are caring for such children. In order to improve services to these families, it is important that we understand how the notion of strengths play out in their everyday lives. Observations are made about the care giving plan, which all families devise in the course of caring for their child with special needs. Implications for paid professionals who serve these families are offered by presenting a model for putting family care givers at the hub of the service provision wheel.

Patterns of care and outcomes for pregnant inmates and their infants in Texas state prisons: Epidemiologic and ethnographic analyses

Female inmates make up the fastest growing segment in our criminal justice system today. The rapidly increasing trend for female prisoners calls for enhanced efforts to strategically plan the correctional facilities that address the needs of this growing population, and to work with communities to prevent crime in women. The incarcerated women in the U.S. have an estimated 145,000 minor children who are predisposed to unique psychosocial problems as a result of parental incarceration.^ This study examined the patterns of care and outcomes for pregnant inmates and their infants in Texas state prisons between 1994 and 1996. The study population consists of 202 pregnant inmates who delivered in a 2-year period, and a randomly sampled comparison cohort of 804 women from general Texas population, matched on race and educational levels. Both quantitative and qualitative data were used to elucidate the inmates' risk-factor profile, delivery/birth outcomes, and the patterns of care during pregnancy. The continuity-of-care issues for this population were also explored.^ Epidemiologic data were derived from multiple record systems to establish the comparison between two cohorts. A significantly great proportion of the inmates have prior lifestyle risk-factors (smoking, alcohol, and illicit drug abuse), poorer health status, and worse medical history. However, most of these existing risk-factors seem to show little manifestation in their current pregnancy. On the basis of maternal labor/delivery outcome and a number of neonatal indicators, this study found some evidence of a better pregnancy outcome for the inmate cohort when compared to the comparison group. Some possible explanations of this paradox were discussed. Seventeen percent of inmates gave birth to infants with suspected congenital syphilis. The placement patterns for the infants' care immediately after birth were elucidated.^ In addition to the quantitative data, an ethnographic approach was used to collect qualitative data from a subset of the inmate cohort (n = 20) and 12 care providers. The qualitative data were analyzed for their contents and themes, giving rise to a detailed description of the inmates' pregnancy experience. Eleven themes emerged from the study's thematic analysis, which provides the context for interpreting the epidemiologic data.^ Meaningful findings in this study were presented in a three-dimensional matrix to shed light on the apparent relationship between outcome indicators and their potential determinants. The suspected "linkages" between the outcome and their determinants can be used to generate hypotheses for future studies. ^

[Transition - how adolescents with cystic fibrosis their parents experience the change from paediatric to adult care].

BACKGROUND Cystic Fibrosis is the most common autosomal-recessive hereditary disease among white Europeans. The average survival of CF patients has increased to above 40 years and transition from paediatric to adult care has therefore become a significant issue. AIM With this study, experiences of adolescents with CF and their parents with the transition from the paediatric to the adult care were explored. METHODS At a Swiss university CF centre, six adolescents and their mothers were recruited. Twelve narrative interviews were conducted on how the phase of transition was experienced. The transcribed interviews were analysed according to the method of hermeneutic phenomenology. RESULTS Positive and negative experiences with long term routine care in the paediatric service, general themes of adolescence and the quality of the relationship with paediatric doctors influenced the families' experience during transition significantly. For mothers, insensitive information on the CF diagnosis might have influenced the transition experience. The adolescents welcomed an individualized and age appropriate care. Continuity in care, the announcement of, and involvement in the planning of the transfer were of great importance. The families particularly appreciated the timed adaptations of the transfer to individual needs. CONCLUSIONS Flexibility and a strong collaboration between paediatric and adult CF teams are most relevant in the care of families.

Estimating the prevalence of comorbid conditions and their effect on health care costs in patients with diabetes mellitus in Switzerland.

BACKGROUND Estimating the prevalence of comorbidities and their associated costs in patients with diabetes is fundamental to optimizing health care management. This study assesses the prevalence and health care costs of comorbid conditions among patients with diabetes compared with patients without diabetes. Distinguishing potentially diabetes- and nondiabetes-related comorbidities in patients with diabetes, we also determined the most frequent chronic conditions and estimated their effect on costs across different health care settings in Switzerland. METHODS Using health care claims data from 2011, we calculated the prevalence and average health care costs of comorbidities among patients with and without diabetes in inpatient and outpatient settings. Patients with diabetes and comorbid conditions were identified using pharmacy-based cost groups. Generalized linear models with negative binomial distribution were used to analyze the effect of comorbidities on health care costs. RESULTS A total of 932,612 persons, including 50,751 patients with diabetes, were enrolled. The most frequent potentially diabetes- and nondiabetes-related comorbidities in patients older than 64 years were cardiovascular diseases (91%), rheumatologic conditions (55%), and hyperlipidemia (53%). The mean total health care costs for diabetes patients varied substantially by comorbidity status (US$3,203-$14,223). Patients with diabetes and more than two comorbidities incurred US$10,584 higher total costs than patients without comorbidity. Costs were significantly higher in patients with diabetes and comorbid cardiovascular disease (US$4,788), hyperlipidemia (US$2,163), hyperacidity disorders (US$8,753), and pain (US$8,324) compared with in those without the given disease. CONCLUSION Comorbidities in patients with diabetes are highly prevalent and have substantial consequences for medical expenditures. Interestingly, hyperacidity disorders and pain were the most costly conditions. Our findings highlight the importance of developing strategies that meet the needs of patients with diabetes and comorbidities. Integrated diabetes care such as used in the Chronic Care Model may represent a useful strategy.

What women want: a qualitative study about postnatal midwifery care at home

In Switzerland, decreases in regular hospital treatment after birth are leading increasingly to mother and child being cared for at home by independent midwives. The research herein was carried out in order to understand the needs of mothers in their home once they leave the hospital and what this midwife provided care consists of. In 2008, eight women from central Switzerland were interviewed on two separate occasions after the birth of their child, and the interviews were analysed using content analysing techniques. Mothers explained that they wanted their baby and themselves to be well cared for. They needed rest and support for recuperation and wished to spend quality time with their new family. The midwifes assisted the mothers to fulfil their needs by counselling, by instructing and by giving information, but they rarely encouraged them to be together as a family. The relationship between midwife and mother turned out to be an important support. Mothers were satisfied if mutual trust was built and if the midwife perceived their needs, respected their autonomy and took the time to be with them. Midwives contribute to the basic well-being of families and support women with medical expertise and ongoing care. Furthermore families need support in general household issues so that new mothers can recover sufficiently.

Colonization with resistant microorganisms in patients transferred from abroad: who needs to be screened?

BACKGROUND While multi-drug resistant organisms (MDRO) are a global phenomenon, there are significant regional differences in terms of prevalence. Traveling to countries with a high MDRO prevalence increases the risk of acquiring such an organism. In this study we determined risk factors for MDRO colonization among patients who returned from a healthcare system in a high-prevalence area (so-called transfer patients). Factors predicting colonization could serve as screening criteria to better target those at highest risk. METHODS This screening study included adult patients who had been exposed to a healthcare system abroad or in a high-prevalence region in Switzerland over the past six months and presented to our 950-bed tertiary care hospital between January 1, 2012 and December 31, 2013, a 24-month period. Laboratory screening tests focused on Gram-negative MDROs and methicillin-resistant Staphylococcus aureus (MRSA). RESULTS A total of 235 transfer patients were screened and analyzed, of which 43 (18 %) were positive for an MDRO. Most of them yielded Gram-negative bacteria (42; 98 %), with only a single screening revealing MRSA (2 %); three screenings showed a combination of Gram-negative bacteria and MRSA. For the risk factor analysis we focused on the 42 Gram-negative MDROs. Most of them were ESBL-producing Escherichia coli and Klebsiella pneumoniae while only two were carbapenemase producers. In univariate analysis, factors associated with screening positivity were hospitalization outside of Europe (p < 0.001), surgical procedure in a hospital abroad (p = 0.007), and - on admission to our hospital - active infection (p = 0.002), antibiotic treatment (p = 0.014) and presence of skin lesions (p = 0.001). Only hospitalization outside of Europe (Odds Ratio, OR 3.2 (95 % CI 1.5- 6.8)) and active infection on admission (OR 2.7 (95 % CI 1.07- 6.6)) remained as independent predictors of Gram-negative MDRO colonization. CONCLUSION Our data suggest that a large proportion of patients (i.e., 82 %) transferred to Switzerland from hospitals in high MDRO prevalence areas are unnecessarily screened for MDRO colonization. Basing our screening strategy on certain criteria (such as presence of skin lesions, active infection, antibiotic treatment, history of a surgical procedure abroad and hospitalization outside of Europe) promises to be a better targeted and more cost-effective strategy.

Dexmedetomidine versus standard care sedation with propofol or midazolam in intensive care: an economic evaluation.

INTRODUCTION Dexmedetomidine was shown in two European randomized double-blind double-dummy trials (PRODEX and MIDEX) to be non-inferior to propofol and midazolam in maintaining target sedation levels in mechanically ventilated intensive care unit (ICU) patients. Additionally, dexmedetomidine shortened the time to extubation versus both standard sedatives, suggesting that it may reduce ICU resource needs and thus lower ICU costs. Considering resource utilization data from these two trials, we performed a secondary, cost-minimization analysis assessing the economics of dexmedetomidine versus standard care sedation. METHODS The total ICU costs associated with each study sedative were calculated on the basis of total study sedative consumption and the number of days patients remained intubated, required non-invasive ventilation, or required ICU care without mechanical ventilation. The daily unit costs for these three consecutive ICU periods were set to decline toward discharge, reflecting the observed reduction in mean daily Therapeutic Intervention Scoring System (TISS) points between the periods. A number of additional sensitivity analyses were performed, including one in which the total ICU costs were based on the cumulative sum of daily TISS points over the ICU period, and two further scenarios, with declining direct variable daily costs only. RESULTS Based on pooled data from both trials, sedation with dexmedetomidine resulted in lower total ICU costs than using the standard sedatives, with a difference of €2,656 in the median (interquartile range) total ICU costs-€11,864 (€7,070 to €23,457) versus €14,520 (€7,871 to €26,254)-and €1,649 in the mean total ICU costs. The median (mean) total ICU costs with dexmedetomidine compared with those of propofol or midazolam were €1,292 (€747) and €3,573 (€2,536) lower, respectively. The result was robust, indicating lower costs with dexmedetomidine in all sensitivity analyses, including those in which only direct variable ICU costs were considered. The likelihood of dexmedetomidine resulting in lower total ICU costs compared with pooled standard care was 91.0% (72.4% versus propofol and 98.0% versus midazolam). CONCLUSIONS From an economic point of view, dexmedetomidine appears to be a preferable option compared with standard sedatives for providing light to moderate ICU sedation exceeding 24 hours. The savings potential results primarily from shorter time to extubation. TRIAL REGISTRATION ClinicalTrials.gov NCT00479661 (PRODEX), NCT00481312 (MIDEX).

The care of adults with congenital heart disease across the globe: Current assessment and future perspective

The number of adults with congenital heart disease (CHD) has increased markedly over the past few decades as a result of astounding successes in pediatric cardiac care. Nevertheless, it is now well understood that CHD is not cured but palliated, such that life-long expert care is required to optimize outcomes. All countries in the world that experience improved survival in CHD must face new challenges inherent to the emergence of a growing and aging CHD population with changing needs and medical and psychosocial issues. Founded in 1992, the International Society for Adult Congenital Heart Disease (ISACHD) is the leading global organization of professionals dedicated to pursuing excellence in the care of adults with CHD worldwide. Recognizing the unique and varied issues involved in caring for adults with CHD, ISACHD established a task force to assess the current status of care for adults with CHD across the globe, highlight major challenges and priorities, and provide future direction. The writing committee consisted of experts from North America, South America, Europe, South Asia, East Asia, and Oceania. The committee was divided into subgroups to review key aspects of adult CHD (ACHD) care. Regional representatives were tasked with investigating and reporting on relevant local issues as accurately as possible, within the constraints of available data. The resulting ISACHD position statement addresses changing patterns of worldwide epidemiology, models of care and organization of care, education and training, and the global research landscape in ACHD.