Exploring group differences in the response to a sexual risk reduction intervention to prevent hepatitis C virus reinfection in HIV-infected MSM: a mixed-methods study.

To prevent hepatitis C virus (HCV) reinfection, within the Swiss HCVree Trial, a preventive risk reduction intervention was implemented alongside curative treatment. Formative qualitative research identified three response patterns to the intervention. This mixed-methods study's aim was to cross-validate group differences in (a) the content of sexual risk reduction goals set during intervention and (b) the extent of their behavioural change in condomless anal intercourse with non-steady partners (nsCAI), sexualised and intravenous drug use at start and six-month post-intervention. Qualitative thematic analysis was used to summarise goal setting domains. Quantitative descriptive analysis was used to evaluate group differences based on assumptions of the group descriptions. Results largely confirmed assumptions on inter-group response differences in goal setting and behaviour: as expected group 1 Avoid risks showed the lowest HCV risk profile with changes in nsCAI. Group 2 Minimize-risks and Group 3 Accept-risks showed unchanged nsCAI. Group 3 had the highest HCV risk profile. Differences in their goal preferences (1: condom use; 2 reduction blood exposure; 3 safer dating) highlight diversity in attitudes to behavioural change. Our results improve understanding of variability in intervention responses such as changes in attitudes and behaviour. This provides evidence for intervention tailoring and outcome measurement.

Effect of a Bladder Control Self-Management Program Delivered Through a Health Kiosk.

PURPOSE: The purpose of this study was to examine the feasibility of delivering a bladder control self-management program through a multiuser health kiosk and to evaluate the program's effect on urinary incontinence (UI) and incontinence-specific quality of life (QoL). DESIGN: Secondary analysis of data collected during participants' interactions with the Bladder Control Module (BCM) from the parent study. SUBJECTS AND SETTING: One hundred eleven participants from the parent study were eligible to be included in this secondary analysis. Their mean age was 72.8 years, and most were female (n = 95, 85.6%); 81 (75.7%) identified themselves as Caucasian. Each participant could access the BCM at a health kiosk situated at one of several sites: senior centers, subsidized senior housing, retirement communities, and a public library. METHODS: The BCM comprised 6 sessions self-administered at least 1 week apart. The content focused on lifestyle modification, pelvic floor muscle training, and bladder (habit) retraining, with encouragement of behavioral self-monitoring between sessions. The feasibility of delivering the intervention was measured by the proportion of participants completing each session. The effect of the BCM on incontinence episodes and incontinence-specific QoL was measured, respectively, by a 7-day bladder diary and the Incontinence Impact Questionnaire Short Form. RESULTS: Sixty-one of the 111 eligible participants accessed the BCM. Participants recording incontinence episodes in their baseline bladder diary and completing at least 3 BCM sessions experienced significant decreases in median total UI (P = .01), urge UI (P < .001), and stress UI (P = .02) episodes per day. Incontinence-related QoL significantly improved (P = .03). CONCLUSIONS: Our findings support the potential effectiveness of providing community-based, kiosk-enabled access to a conservative behavioral intervention designed to improve incontinence-related outcomes among older adults with UI. Additional research with a larger sample is warranted.

Patient Education in Intermittent Catheterization: A Consensus Conference.

Despite recent advances in intermittent catheter features, evidence guiding how to best educate patients when beginning and continuing a program of intermittent catheterization remains sparse. To address this gap and guide best practice, a scoping review was conducted and a consensus panel of clinicians and researchers with expertise in intermittent catheterization was convened in person during December 2022 in Austin, Texas, to develop evidence and consensus-based statements guiding instruction of patients beginning intermittent self or assisted catheterization. This article describes the 15 consensus-based statements that can be used to guide best practice in patient education on intermittent catheterization.

A Scoping Literature Review on Patient Education in Intermittent Catheterization.

PURPOSE: To summarize evidence related to (1) research studies examining patient/caregiver educational interventions related to intermittent self/caregiver catheterization (ISC), (2) studies examining issues related to teaching ISC, and (3) evidence-based clinical practice guidelines addressing ISC. PROBLEM: Avoiding lower urinary tract trauma during catheter insertion, adequate frequency of catheterization, and complete emptying of the bladder are essential to prevent and reduce complications associated with ISC. Consequently, proper patient/caregiver education is essential to achieving good outcomes. METHODS: Scoping review of literature. SEARCH STRATEGY: We searched PubMed, EMBASE, and CINAHL databases, and the reference lists of background and included studies for quantitative and qualitative research studies and professional and healthcare organization-generated evidence-based clinical practice guidelines published between 2005 and September 2021. Eleven studies and 2 clinical practice guidelines met our eligibility criteria and are included in the review. FINDINGS: Research conducted in the United States examining the effectiveness of educational interventions for patients needing ongoing ISC is extremely limited. The single study identified was a small pilot feasibility study. Eight studies examining issues potentially related to patient/caregiver ISC education were identified, suggesting that catheter characteristics, patient barriers, and complications, particularly urinary tract infections, adherence, and upper extremity function, are important considerations when developing education interventions. The small number of studies and limitations in the methodologies limit the current evidence base to support patient/caregiver education about ISC. We also identified 2 evidence-based guidelines generated by European professional organizations that included recommendations related to ISC education. CONCLUSIONS: Additional research is needed to support the development of patient/caregiver educational interventions and to examine their effectiveness.

Response to a sexual risk reduction intervention provided in combination with hepatitis C treatment by HIV/HCV co-infected men who have sex with men: a reflexive thematic analysis.

BACKGROUND: Hepatitis C virus reinfections in HIV-positive men-who-have-sex-with-men (MSM) challenge the effectiveness of antiviral treatment. To fight this problem, an adapted sexual risk reduction intervention was implemented within a hepatitis C treatment trial. Following this, the current study had two aims and describes 1) how the program was received by participants; and 2) their responses to the program regarding sexual risk taking. Based on the participants' input, we hoped to judge the intervention's potential for scale-up. METHODS: Seventeen participants who received the sexual risk reduction intervention in addition to hepatitis C treatment were recruited for semi-structured interviews six to 12 months post-intervention. We evaluated the responses via reflexive thematic analysis and applied the concept of sense-making. RESULTS: Giving hepatitis C a place and living without it again illustrates how participants received the program and how their experiences were altered by the impact of sense-making. Based on their responses, we allocated participants to three groups: 1. Avoid risks: get rid of hepatitis C for life. For these men, hepatitis C remained a life-threatening disease: they actively modified their risk behavior and felt supported by the intervention in maintaining their behavioral changes. 2. Minimize risks: live as long as possible without hepatitis C. In contrast to group 1, these men saw hepatitis C as a manageable disease. The intervention facilitated reflection on risks and how to develop behavioral changes that suited them individually. 3. Accept risks; live with the risk of hepatitis C. These men perceived behavioral changes as much more difficult than "easy" medical treatment. They expected to either undergo repeated rounds of treatment or stay HCV re-infected. CONCLUSION: These results illustrate the diversity of men's responses and their decisions regarding sexual risk behavior after participating in a combination of antiviral treatment and a sexual risk reduction intervention. Two major aspects were identified: 1) Teachable moments, particularly at the time of diagnosis/treatment, could offer an opportunity to develop openness for behavioral change; 2) adapting sexual risk reduction interventions to sense-making patterns could help to improve its effectiveness. Support for reducing infection risk and raising awareness of preventative measures are additional benefits. TRIAL REGISTRATION: Clinical Trial Number: NCT02785666 , 30.05.2016.

Effect of a QI Intervention on Nursing Assistants' Pain Knowledge and Reporting Behavior.

BACKGROUND: Pain among long-term care residents is often underdiagnosed and inadequately treated. We examined the effect of a multimodal intervention on certified nursing assistants' pain recognition knowledge and verbal reporting behavior. Secondarily, we examined pain documentation in a newly established pain log compared with pain verbally reported to nurses and documented in the electronic health record (EHR). DESIGN: Quality improvement project using a pretest-posttest design. SETTING: A skilled nursing and rehabilitation facility in Southwestern Pennsylvania including two long-term care units and one transitional rehabilitation unit. PARTICIPANTS/SUBJECTS: Fifty-six nursing assistants. METHODS: The intervention was a face-to-face educational session with a training video and introduction of a new pain log used to document residents' pain. Pain knowledge was measured before and after the educational intervention. Multiple measures were used to examine nursing assistants' pain reporting. RESULTS: Nursing assistants' pain knowledge improved (p < .001). There was no change in verbal pain reporting behaviors. The percent of pain episodes documented in the electronic health record that were reported to nurses varied by unit type (45% on the long-term care units vs. 100% on the rehabilitation unit) but remained unchanged postintervention. Pain logs were used more often on the rehabilitation than the long-term care units; use was low overall. Nursing assistant reports that nurses provided feedback on their reports of resident pain increased from 45% in week 1 to 75% in week 4. CONCLUSIONS: Although the multimodal intervention improved nursing assistants' pain knowledge and their perceptions of the feedback they received from nurses when they reported pain, it had no effect on certified nursing assistants reporting of pain to nurses (per nurse report).

Interventions Post Catheter Removal (iPCaRe) in the Acute Care Setting: An Evidence- and Consensus-Based Algorithm.

Despite advances in the prevention of catheter-acquired urinary tract infections achieved by programs that include removal of the indwelling urinary catheter at the earliest possible time, evidence guiding bladder and incontinence management strategies following discontinuation of a catheter is sparse. To address this gap and guide best practice, the WOCN Society appointed a Task Force to develop an evidence- and consensus-based algorithm guiding clinical decision-making for effective bladder and incontinence management strategies after indwelling urinary catheter removal. This article describes the design and development of the algorithm, consensus-based statements used to guide best practice in this area, and its content validation.

Current Evidence Related to Intermittent Catheterization: A Scoping Review.

PURPOSE: The purpose was to summarize evidence related to adherence to intermittent catheterization (IC), complication rates, satisfaction with IC, and its effect on health-related quality of life. PROBLEM: Intermittent catheterization is frequently used to manage lower urinary tract dysfunctions including urinary retention and urinary incontinence, but research suggests that care for patients using IC may not always be based on evidence. METHODS: Scoping review. SEARCH STRATEGY: We searched the PubMed, EMBASE, CINAHL databases, and the Cochrane Database for Systematic Reviews to identify studies published between January 2009 and March 2019. Seventy studies met inclusion criteria and were evaluated for adherence, complication rates, satisfaction, and health-related quality in adults and children using IC for bladder management. FINDINGS: Recent research was variable in both quantity and quality. The evidence suggests that (1) most patients can successfully master IC and that functional status is likely the most important predictor of success; (2) adherence to IC probably decreases over time; (3) urinary tract infections (UTIs) are the most common complication of IC and that prophylactic antibiotic therapy may reduce the risk of recurrent UTIs; (4) urinary incontinence is also a common complication; and (5) other complications such as urethral strictures, bladder stones, hematuria, and urethral false passage do occur but are less prevalent than UTIs and incontinence between catheterizations. Our review also revealed multiple gaps in the evidence to support care for patients using IC. CONCLUSIONS: Research priorities include a need for prospective studies of the epidemiology and risk factors for IC-related complications, along with intervention studies to determine how to improve outcomes for patients using IC to manage bladder function.

Screening HIV-positive men who have sex with men for hepatitis C re-infection risk: is a single question on condom-use enough? A sensitivity analysis.

BACKGROUND: Hepatitis C virus (HCV) is common in men who have sex with men (MSM) with HIV. The Swiss HCVree Trial targeted a micro-elimination by using a treat and counsel strategy. Self-reported condomless anal intercourse with non-steady partners was used as the selection criterion for participation in a counselling intervention designed to prevent HCV re-infection. The purpose of this study was to assess the ability of this criterion to identify men who engaged in other sexual risk behaviours associated with HCV re-infection. METHODS: Men who disclosed their sexual and drug- use behaviours during the prior 6 months, at study baseline, were included in the current study. Using a descriptive comparative study design, we explored self-reported sexual and drug-use risk behaviours, compared the odds of reporting each behaviour in men who reported and denied condomless anal intercourse with non-steady partners during the prior year and calculated the sensitivity/specificity (95% CI) of the screening question in relation to the other at-risk behaviours. RESULTS: Seventy-two (61%) of the 118 men meeting eligibity criteria reported condomless anal intercourse with non-steady partners during the prior year. Many also engaged in other potential HCV transmission risk behaviours, e.g., 52 (44%) had used drugs. In participants disclosing drug use, 44 (37%) reported sexualised drug use and 17 (14%) injected drugs. Unadjusted odds ratios (95% CI) for two well-known risk behaviours were 2.02 (0.80, 5.62) for fisting and 5.66 (1.49, 37.12) for injecting drug use. The odds ratio for sexualised drug use - a potential mediator for increased sexual risk taking - was 5.90 (2.44, 16.05). Condomless anal intercourse with non-steady partners showed varying sensitivity in relation to the other risk behaviours examined (66.7-88.2%). CONCLUSIONS: Although condomless anal intercourse with non-steady partners was fairly sensitive in detecting other HCV relevant risk behaviours, using it as the only screening criterion could lead to missing a proportion of HIV-positive men at risk for HCV re-infection due to other behaviours. This work also points to the importance of providing access to behavioral interventions addressing other sexual and drug use practices as part of HCV treatment. TRIAL REGISTRATION: Clinical Trial Number: NCT02785666 , 30.05.2016.

Patterns of paediatric end-of-life care: a chart review across different care settings in Switzerland.

BACKGROUND: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific aspects of paediatric end-of-life care. The aim of this study was to comprehensively describe, explore and compare current practices in paediatric end-of-life care in four distinct diagnostic groups across healthcare settings including all relevant levels of healthcare providers in Switzerland. METHODS: In this nationwide retrospective chart review study, data from paediatric patients who died in the years 2011 or 2012 due to a cardiac, neurological or oncological condition, or during the neonatal period were collected in 13 hospitals, two long-term institutions and 10 community-based healthcare service providers throughout Switzerland. RESULTS: Ninety-three (62%) of the 149 reviewed patients died in intensive care units, 78 (84%) of them following withdrawal of life-sustaining treatment. Reliance on invasive medical interventions was prevalent, and the use of medication was high, with a median count of 12 different drugs during the last week of life. Patients experienced an average number of 6.42 symptoms. The prevalence of various types of symptoms differed significantly among the four diagnostic groups. Overall, our study patients stayed in the hospital for a median of six days during their last four weeks of life. Seventy-two patients (48%) stayed at home for at least one day and only half of those received community-based healthcare. CONCLUSIONS: The study provides a wide-ranging overview of current end-of-life care practices in a real-life setting of different healthcare providers. The inclusion of patients with all major diagnoses leading to disease- and prematurity-related childhood deaths, as well as comparisons across the diagnostic groups, provides additional insight and understanding for healthcare professionals. The provision of specialised palliative and end-of-life care services in Switzerland, including the capacity of community healthcare services, need to be expanded to meet the specific needs of seriously ill children and their families.

ExplorinG frailty and mild cognitive impairmEnt in kidney tRansplantation to predict biomedicAl, psychosocial and health cost outcomeS (GERAS): protocol of a nationwide prospective cohort study.

AIM: To present the rationale, design and methodology of the GERAS project, which examines whether assessment of frailty and mild cognitive impairment could enhance risk prediction for biomedical, psychosocial outcomes and foster efficient resource allocation in kidney transplantation. BACKGROUND: For the burgeoning cohort of older patients considered for kidney transplantation, evidence gaps regarding frailty and mild cognitive impairment limit clinical decision-making and medical management. As known risk factors for 'hard' clinical outcomes in chronic illness, both require further study in transplantation. Integrating these and other bio-psychosocial factors into a comprehensive pre-transplant patient assessment will provide insights regarding economic implications and may improve risk prediction. DESIGN: A nation-wide multi-centre prospective cohort study nested in the Swiss Transplant Cohort Study. METHODS: Our nationally representative convenience sample includes 250 adult kidney transplant recipients. Data sources include the Swiss Transplant Cohort Study and primary data collected at time of transplantation, 6 months, 1 and 2 years post-transplant via established measures (the Montreal Cognitive Assessment, Psychosocial Questionnaire, Fried Frailty Instrument and a blood analysis), investigator-developed instruments and datasets compiled by hospitals' management control units, sickness funds, the Swiss Federal Statistical Office and the European Renal Association. Descriptive, competing risk survival and mixed effects analyses will be performed. Research Ethics Committee approval was obtained in January 2016. DISCUSSION: This pioneering project jointly examines frailty and mild cognitive impairment from bio-psychosocial and health economic perspectives. Results may significantly inform risk prediction, care tailoring and resource optimization to improve health outcomes in the ageing kidney transplant cohort.

When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child's end-of life care.

BACKGROUND: Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the heterogeneity within the medical field of paediatrics, and fit into the local health care system. We need to better understand the perspectives of parents facing the death of their child in order to guide further development and evaluation of specialised paediatric palliative and end-of-life (EOL) care services. METHODS: Questionnaire survey to assess the EOL care perspectives of a Swiss population-based sample of bereaved parents who had lost a child due to a cardiac, neurological or oncological condition, or during the neonatal period in the years 2011 or 2012. The parental perspective was assessed with a newly developed and tested instrument that was structured according to six evidence-based quality domains. Responses regarding parental experiences and perceived satisfaction are described. Differences between the four diagnostic groups are analysed using a generalized estimation equation to account for the dyadic data structure. RESULTS: Of 307 eligible families, 267 could be contacted and 135 (51%) consented to participate in this questionnaire survey. Our findings show positive parental experiences of their child's EOL care and high perceived satisfaction with the care their child received. Parents of a child with cancer rated their experiences highest in most of the six quality domains and reported the highest satisfaction with care. The lowest scores were mainly reported by parents from the neurology group, with the exception of the shared decision making domain, where parents of neonates reported significantly less positive experiences. CONCLUSIONS: Although positive in general, our study results suggest some areas for improvement. The integration of specialised paediatric palliative care has the potential to minimise lost opportunities to support and assist parents.

Evidence on the validity and reliability of the German, French and Italian nursing home version of the Basel Extent of Rationing of Nursing Care instrument.

AIM: To develop and test psychometrically the Basel Extent of Rationing of Nursing Care for Nursing Homes instrument, providing initial evidence on the validity and reliability of the German, French and Italian-language versions. BACKGROUND: In the hospital setting, implicit rationing of nursing care is defined as the withholding of nursing activities due to lack of resources, such as staffing or time. No instrument existed to measure this concept in nursing homes. DESIGN: Cross-sectional study. METHODS: We developed the instrument in three phases: (1) adaption and translation; (2) content validity testing; and (3) initial validity and reliability testing. For phase 3, we analysed survey data from 4748 care workers collected between May 2012-April 2013 from a randomly selected sample of 162 nursing homes in the German-, French- and Italian-speaking regions of Switzerland to provide evidence from response processes (e.g. missing), internal structure (exploratory factor analysis), inter-item inconsistencies (e.g. Cronbach's alpha) and interscorer differences (e.g. within-group agreement). RESULTS: Exploratory factor analysis revealed a four-factor structure with good fit statistics. Rationing of nursing care was structured in four domains: (1) activities of daily living; (2) caring, rehabilitation and monitoring; (3) documentation; and (4) social care. Items of the social care subscale showed lower content validity and more missing values than items of other subscales. CONCLUSION: First evidence indicates that the new instrument can be recommended for research and practice to measure implicit rationing of nursing care in nursing homes. Further refinements of single items are needed.

Factors associated with high job satisfaction among care workers in Swiss nursing homes - a cross sectional survey study.

BACKGROUND: While the relationship between nurses' job satisfaction and their work in hospital environments is well known, it remains unclear, which factors are most influential in the nursing home setting. The purpose of this study was to describe job satisfaction among care workers in Swiss nursing homes and to examine its associations with work environment factors, work stressors, and health issues. METHODS: This cross-sectional study used data from a representative national sample of 162 Swiss nursing homes including 4,145 care workers from all educational levels (registered nurses, licensed practical nurses, nursing assistants and aides). Care worker-reported job satisfaction was measured with a single item. Explanatory variables were assessed with established scales, as e.g. the Practice Environment Scale - Nursing Work Index. Generalized Estimating Equation (GEE) models were used to examine factors related to job satisfaction. RESULTS: Overall, 36.2 % of respondents reported high satisfaction with their workplace, while another 50.4 % were rather satisfied. Factors significantly associated with high job satisfaction were supportive leadership (OR = 3.76), better teamwork and resident safety climate (OR = 2.60), a resonant nursing home administrator (OR = 2.30), adequate staffing resources (OR = 1.40), fewer workplace conflicts (OR = .61), less sense of depletion after work (OR = .88), and fewer physical health problems (OR = .91). CONCLUSIONS: The quality of nursing home leadership-at both the unit supervisor and the executive administrator level-was strongly associated with care workers' job satisfaction. Therefore, recruitment strategies addressing specific profiles for nursing home leaders are needed, followed by ongoing leadership training. Future studies should examine the effects of interventions designed to improve nursing home leadership and work environments on outcomes both for care staff and for residents.

Effectiveness of Pelvic Floor Muscle Training for Urinary Incontinence: Comparison Within and Between Nonhomebound and Homebound Older Adults.

PURPOSE: To compare the effectiveness of a biofeedback-taught pelvic floor muscle training (PFMT) intervention in reducing urinary incontinence (UI) and improving general health-related and UI-specific quality of life in homebound and nonhomebound older adults. We also compared adherence rates to the prescribed PFM exercises and strategies (urge and/or stress) in the 2 groups of subjects. DESIGN: Secondary data analysis of initial 6-week PFMT intervention data from a randomized controlled trial designed to examine the efficacy of a relapse prevention intervention in sustaining improvements in UI following PFMT. SUBJECTS AND SETTING: The sample comprised 93 homebound and 185 nonhomebound community-dwelling men and women 60 years and older with urge, stress, or mixed UI at least twice a week for a minimum of 3 months. METHODS: The intervention consisted of 6 weekly in-home visits during which biofeedback via transcutaneous electromyographic patches was used to teach subjects pelvic floor muscle exercises and, as indicated, stress and/or urge suppression strategies to prevent involuntary urine loss. Incontinence severity was measured by a 1-week bladder diary at baseline and at the end of the 6-week intervention. Health-related quality of life was measured at baseline and postintervention using the Medical Outcomes Study Short Form-36 (MOS SF-36) (general health-related quality of life), and the Modified Incontinence Impact Questionnaire (MIIQ). Self-reported adherence data were collected at each intervention visit. RESULTS: At baseline, homebound subjects had significantly more severe UI, more comorbid conditions, and higher levels of functional impairment than nonhomebound subjects. Following the intervention, there was a significant reduction in the number of incontinent episodes in both homebound and nonhomebound subjects, with no significant group differences (P = .25) in the median percent reduction in UI (64.5% in homebound vs 70.4% in nonhomebound subjects). UI-specific quality of life (MIIQ total scores) improved significantly in both groups without any significant between-group differences (P = .83). There were no significant changes in health-related quality of life in either group. Pelvic floor muscle adherence rates were higher than adherence rates to strategies in both groups, with no significant group differences. CONCLUSIONS: The biofeedback-guided PFMT intervention was equally effective in reducing UI and improving UI-specific quality of life in homebound and nonhomebound community-dwelling older adults.

Development and initial validation of the Parental PELICAN Questionnaire (PaPEQu)--an instrument to assess parental experiences and needs during their child's end-of-life care.

AIM: To develop and test the Parental PELICAN Questionnaire, an instrument to retrospectively assess parental experiences and needs during their child's end-of-life care. BACKGROUND: To offer appropriate care for dying children, healthcare professionals need to understand the illness experience from the family perspective. A questionnaire specific to the end-of-life experiences and needs of parents losing a child is needed to evaluate the perceived quality of paediatric end-of-life care. DESIGN: This is an instrument development study applying mixed methods based on recommendations for questionnaire design and validation. METHOD: The Parental PELICAN Questionnaire was developed in four phases between August 2012-March 2014: phase 1: item generation; phase 2: validity testing; phase 3: translation; phase 4: pilot testing. Psychometric properties were assessed after applying the Parental PELICAN Questionnaire in a sample of 224 bereaved parents in April 2014. Validity testing covered the evidence based on tests of content, internal structure and relations to other variables. RESULTS: The Parental PELICAN Questionnaire consists of approximately 90 items in four slightly different versions accounting for particularities of the four diagnostic groups. The questionnaire's items were structured according to six quality domains described in the literature. Evidence of initial validity and reliability could be demonstrated with the involvement of healthcare professionals and bereaved parents. CONCLUSION: The Parental PELICAN Questionnaire holds promise as a measure to assess parental experiences and needs and is applicable to a broad range of paediatric specialties and settings. Future validation is needed to evaluate its suitability in different cultures.

Building research initiative group: chronic illness management and adherence in transplantation (BRIGHT) study: study protocol.

AIM: This article describes the rationale, design and methodology of the Building research initiative group: chronic illness management and adherence in transplantation (BRIGHT) study. This study of heart transplant patients will: (1) describe practice patterns relating to chronic illness management; (2) assess prevalence and variability of non-adherence to the treatment regimen; (3) determine the multi-level factors related to immunosuppressive medication non-adherence. BACKGROUND: The unaltered long-term prognosis after heart transplantation underscores an urgent need to identify and improve factors related to survival outcomes. The healthcare system (e.g. level of chronic illness management implemented) and patient self-management are major drivers of outcome improvement. DESIGN: The study uses a survey design in 40 heart transplant centres covering 11 countries in four continents. METHODS: Theoretical frameworks informed variable selection, which are measured by established and investigator-developed instruments. Heart transplant recipients, outpatient clinicians and programme's directors complete a survey. A staged convenience sampling strategy is implemented in heart transplant centres, countries and continents. Depending on the centre's size, a random sample of 25-60 patients is selected (N estimated 1680 heart transplant recipients). Five randomly selected clinicians and the medical director from each centre will be invited to participate. CONCLUSION: This is the first multi-centre, multi-continental study examining healthcare system and heart transplant centres chronic illness management practice patterns and potential correlates of immunosuppressive medication non-adherence. The knowledge gained will inform clinicians, researchers and healthcare policy makers at which level(s) interventions need to be implemented to improve long-term outcomes for transplant recipients.

Swiss Nursing Homes Human Resources Project (SHURP): protocol of an observational study.

AIM: To explore the relationships among various nursing homes characteristics including work environment, careworker outcomes and resident outcomes in Swiss nursing homes. BACKGROUND: In Switzerland, a growing number of older people live in nursing homes. Although research has addressed the issue of quality of nursing care in such facilities, few have integrated a range of interrelated factors that may influence the quality and safety of residential care. The Swiss Nursing Homes Human Resources Project will comprehensively assess key organizational factors, their interrelationships and the associations between these factors and careworker and resident outcomes. DESIGN: Cross-sectional design. METHODS: Three-year multi-centre study (2011-2013) including a representative sample of approximately 160 nursing homes across the three language regions in Switzerland. Survey data will come from approximately 6000 careworkers and 160 administrators. Survey questionnaires will include variables on organizational facility characteristics and resident outcomes, careworker socio-demographic and professional characteristics, the quality of their work environments, resident safety climates and careworker outcomes. Appropriate descriptive and comparative analysis will be used and multivariate and multilevel analyses will be applied to examine the relationships among the various factors including quality of the work environment, safety climate, work stressors, rationing of care, workload, careworker and resident characteristics, as well as resident and careworker outcomes. DISCUSSION: The study results will contribute to a comprehensive understanding of the interrelationships between key organizational factors and resident/careworker outcomes and will also support planning and conducting interventions to improve quality of care concerning organizational factors affecting careworkers in daily practice.

Surviving with lung cancer: medication-taking and oral targeted therapy.

Oral epidermal growth factor receptor inhibitors (EGFRIs) improve survival for non-small cell lung cancer (NSCLC) patients; however, medication-taking implications are unknown. We used grounded theory to explore the process of medication-taking for NSCLC patients receiving oral EGFRIs. Thirty-two interviews were conducted for 13 participants purposively selected for gender, race/ethnicity, age, time in therapy, dose reductions, and therapy discontinuation and theoretically sampled for age and health insurance carrier. The study produced a grounded theory, Surviving with Lung Cancer, in which participants framed EGFRI therapy within recognition of NSCLC as a life-limiting illness without cure. Medication-taking was a "window" into participants' process of surviving with metastatic cancer that included deciding and preparing to take EGFRIs and treating lung cancer as a chronic condition. Our results contribute to understanding how NSCLC patients view themselves in the context of a life-limiting illness and support development of a theoretically-based intervention to improve medication-taking with EGFRIs.

Impact of lifestyle-based interventions on absolute cardiovascular disease risk: a systematic review and meta-analysis.

OBJECTIVE: The objective of the review was to synthesize the evidence of the effectiveness of lifestyle-based interventions for mitigating absolute cardiovascular disease (CVD) risk. INTRODUCTION: Evidence-based guidelines recommend employing an absolute CVD risk score to inform the selection and intensity of preventive interventions. However, studies employing this strategy have reported mixed results, hence the need for a systematic review of the current evidence. INCLUSION CRITERIA: Studies published in English that included a lifestyle-based intervention to mitigate CVD risk were considered. Studies were eligible if they enrolled individuals aged ≥18 years, with no history of CVD at baseline. The primary outcome was change in absolute CVD risk score post-intervention. METHODS: PubMed, Embase, and CINAHL searches were conducted from database inception to February 2022. The trial registers searched included Cochrane Central Register of Controlled Trials (CENTRAL) and ClinicalTrials.gov. Searches for unpublished studies/gray literature were conducted in ProQuest Dissertations and Theses Global, GreyLit Report, and OCLC First Search Proceedings. Two independent reviewers selected the studies and critically appraised them for methodological quality using JBI tools. Data extraction was performed for main outcome variables. Data were presented using separate pooled statistical meta-analysis for quasi-experimental and randomized clinical trials. Random effects models were employed in the analyses. Effect sizes (Cohen's d) were expressed as standardized mean difference at 95% CI. Heterogeneity was assessed via Cochran's Q statistic, and the inconsistency index ( I2 ) was used to describe variability in effect estimates due to heterogeneity rather than sampling error. RESULTS: Twenty-nine studies with a total sample of 5490 adults with no CVD at baseline were included. Fifteen were randomized controlled trials (RCTs; n=3605) and 14 were quasi-experimental studies (n=1885). The studies were conducted in Europe (n=18), the United States (n = 5), Asia (n=3), Mexico (n=1), Canada (n = 1), and Australia (n=1) and included the following lifestyle interventions: diet, physical activity, motivational interviewing, problem-solving, psychological counseling, cardiovascular risk assessment and feedback, health self-management education, and peer support. Six validated absolute CVD risk assessment tools were used to measure the study outcomes, including Framingham, SCORE, Heart Health Risk Assessment Score, Dundee, ASSIGN, and The UK Prospective Diabetes Study risk score. Overall, the methodological rigor of the RCTs and quasi-experimental studies was high. Of the 15 RCTs included in the meta-analysis, lifestyle intervention was favored over control in reducing absolute CVD risk score (Cohen's d = -0.39; P =0.032; Z= -2.14; I2 = 96). Similarly, in the 14 quasi-experimental studies, the absolute CVD risk score after lifestyle intervention was significantly lower compared to baseline (Cohen's d = -0.39; P <0.001; Z= -3.54; I2= 88). RCTs that combined diet and physical activity reported no significant impact on absolute CVD risk score, but those that used either intervention independently reported significant improvement in the absolute CVD risk score. CONCLUSIONS: There is evidence supporting the positive impact of lifestyle modification on absolute CVD risk score in adult populations without CVD. Our analysis further suggests that diet and physical activity had significant impact on absolute CVD risk, and a variety of validated screening tools can be used to monitor, evaluate, and communicate changes in absolute risk score after lifestyle modification. SUPPLEMENTAL DIGITAL CONTENT: A Spanish-language version of the abstract of this review is available [ http://links.lww.com/SRX/A29 ].