Exploring the influence of socio-cultural factors and environmental resources on the health related quality of life of children and adolescents after congenital heart disease surgery: parental perspectives from a low middle income country

Background: Health related quality of life (HRQOL) is an important indicator of long-term well-being, influenced by environmental factors such as family, culture, societal norms and available resources. This study aimed to explore parental perspectives on the influence of socio-cultural factors and environmental resources on the HRQOL of children and adolescents after congenital heart disease (CHD) surgery.Methods: Using a descriptive, qualitative design, semi-structured interviews of children/adolescents who had CHD surgery in this low-middle income country (LMIC) were collected between July to December 2017. There were 20 families enrolled, which included 18 parent dyads (mother and father) and two single mothers, making a total of 38 participants. Initial inductive analysis was further refined using the Social Ecological Model as an analytic lens.Results: At the intrapersonal level, unrealistic expectations of surgery, residual CHD symptoms and difficulty maintaining educational progress were of great concern. There were low levels of health literacy and understanding about CHD among family and friends, however, strong kinship ties were an important resource at the interpersonal level. These families lived in poverty and mothers often carried the sole burden of care for their sick children. At the institutional level, there were unclear expectations of the child\u27s needs at school, and parents had poor access to psychological, family-planning and genetic counselling, and poor access to CHD education resources. At a sociocultural level, religion and trust in God were important coping factors, however, CHD was a gendered experience with particular concerns around scarring and the marriageability of girls. Parents noted the deficit of antenatal and specialist CHD services and felt the consequence of a lack of a universal health care system at the public policy level.Conclusion: Socio-ecological factors have the potential to explain the issues and challenges that children living in LMIC experience with CHD after surgery. The study findings will help to inform future interventions to be implemented in countries like Pakistan

A Chinese immigrant paradox? : low coronary heart disease incidence but higher short-term mortality in Western-dwelling Chinese immigrants : a systematic review and meta-analysis

Background-Chinese form a large proportion of the immigrant population in Western countries. There is evidence that Chinese immigrants experience an increased risk of coronary heart disease (CHD) after immigration in part due to cultural habits and acculturation. This is the first systematic review and meta-analysis that aims to examine the risk of CHD in people of Chinese ethnicity living in Western countries, in comparison with whites and another major immigrant group, South Asians. Methods and Results-Literature on the incidence, mortality, and prognosis of CHD among Chinese living in Western countries was searched systematically in any language using 6 electronic databases up to December 2014. Based on the meta-analysis, Chinese had lower incidence of CHD compared with whites (odds ratio 0.29; 95% CI: 0.24-0.34) and South Asians (odds ratio 0.37; 95% CI: 0.24-0.57) but higher short-term mortality after first hospitalization for acute myocardial infarction compared with whites (odds ratio 1.34; 95% CI, 1.04-1.73) and South Asians (odds ratio 1.82; 95% 1.33-2.50). There was no significant difference between Chinese immigrants and whites in long-term outcomes (mortality and recurrent events) after acute myocardial infarction. Conclusions-These findings provide an important focus for resource planning to enhance early secondary prevention of CHD to improve short-term survival outcomes among Western-dwelling Chinese immigrants

The validity and reliability of consumer-grade activity trackers in older, community-dwelling adults: a systematic review

Objective: To understand the validity and reliability of consumer-grade activity trackers (consumer wearables) in older, community-dwelling adults.Methods: A systematic review of studies involving adults aged over 65 years who underwent physical activity monitoring with consumer wearables. A total of 7 observational studies qualified, identified from electronic databases: MEDLINE, EMBASE, Cochrane Library and others (2014 to 2018). Validity was interpreted using correlation coefficients (CC) and percentage error for agreement between reference devices or gold-standard validation methods. Reliability was compared using mean differences or ranges (under- or overestimation) of step count and activity time.Results: Total sample size was 290 adults, mean age of 70.2±4.8 years and females constituting 46.7±26.1%. The studies evaluated eight different consumer wearables used by community-dwelling adults with a range of co-morbidities. Daily step count for all consumer wearables correlated highly with validation criterion, especially the ActiGraph device: intraclass correlation coefficients (ICC) were 0.94 for Fitbit One, 0.94 for Zip, 0.86 for Charge HR and 0.96 for Misfit Shine. Slower walking pace and impaired ambulation reduced the levels of agreement. Daily step count captured by Fitbit Zip was on average 7117 (±5,880.6), which was overestimated by five of the eight consumer wearables compared with reference devices (range 167.6 to 2,690.3 steps/day). Measurement of activity duration was accurate compared with reference devices, yet less so than step count.Conclusion: In older, community-dwelling adults, consumer wearables accurately measure step count and activity duration, as confirmed by reference devices and validation methods. Further research is required to understand how co-morbidities, gait and activity levels interact with monitoring in free-living environments

Structures, processes and outcomes of specialist critical care nurse education: An integrative review

Objectives: The objective of this study was to review and synthesise international literature to reveal the contemporary structures, processes, and outcomes of critical care nurse (CCN) education. Method: An integrative review on specialist critical care education was guided by Whittemore and Knafl's integrative review steps: problem identification; literature search; and data evaluation, analysis, and presentation. Donabedian's Quality Framework (Structure-Process-Outcome) provided a useful analytical lens and structure for the reporting of findings. Results: (1) Structures for CCN education incorporated transition-to-practice and ongoing education programs typically offered by hospitals and health services and university-level graduate certificate, diploma, and masters programs. Structural expectations included a standard core curriculum, clinically credible academic staff, and courses compliant with a higher education framework. Published workforce standards and policies were important structures for the practice learning environment. (2) Processes included incremental exposure to increasing patient acuity; consistent and appropriately supported and competent hospital-based preceptors/assessors; courses delivered with a flexible, modular approach; curricula that support nontechnical skills and patient- and family-centred care; stakeholder engagement between the education provider and the clinical setting to guide course planning, evaluation and revalidation; and evidence-based measurement of clinical capabilities/competence. (3) Outcomes included articulation of the scope and levels of graduate attributes and professional activities associated with each level. The role of higher degree research programs for knowledge creation and critical care academic leadership was noted. Conclusions: Provision of high-quality critical care education is multifaceted and complex. These findings provide information for healthcare organisations and education providers. This may enable best practice structures and processes for critical care specialist training that meets the needs of industry and safely supports developing CCN expertise. There is an acknowledged tension between the expectations of governing bodies for policies, standards, and position statements to enhance quality and reduce care variance and the availability of high-quality evidence to underpin these across international contexts

The Ties That Bind Us: How Existing Relationships, Health and Gender Shape Family Care in Chronic Obstructive Pulmonary Disease

Chronic obstructive pulmonary disease (COPD) changes family roles and relationship dynamics and the experience of the disease is influenced by family functioning. Merleau- Ponty’s existential philosophy of the body pro- vided the framework for this Heideggerian phenomenological inquiry. Fifteen people with COPD and 14 family members engaged in 58 semi-structured interviews either face-to-face or by telephone. This study identified a differ- ence in the essence of the lived experiences between male and female carers, and between spousal and non-spousal carers in relation to severe COPD. Previous reciprocity framed the level of acceptance of the caring role and per- ception of care burden. The stories highlight the self-perceived need for women carers to be conscious micro-managers of illness. Male fam- ily members would care alongside, lending support and caring in a reactive way as specif- ic needs or crises arose. Caring in COPD required a binding vigilance ; a constant need of the carer to monitor the physical and emo- tional well-being of the sick person that bound them emotionally and cognitively to the task of caring. Carers were the managers of crises and families cared from a perspective of possible death. Family was perceived as the best thing in life. Health professionals should consider the influence of gender, family relationships and the impact of reciprocity when planning support for family caregivers. Further research is required to identify the similarities and dif- ferences in family caring between COPD and other chronic illnesses, and to further under- stand the specific needs of male carers

Qualitative Data Analysis for Health Research: A Step-by-Step Example of Phenomenological Interpretation

Phenomenological studies have been critiqued when analytic activities and intersection with the underpinning philosophy lack clarity. This methodological discussion paper describes data analysis in hermeneutic interpretive phenomenology. Data management strategies (transcript preparation, coding, philosophy application, tabling/concept maps, and Microsoft Word) and data analysis processes (reduction, display, and conclusion drawing/verification) are illustrated. Deconstruction, reconstruction, and reorganisation of themes/subthemes using hierarchical heading styles to populate the navigation pane and philosophical tenets acted as analytic hooks. This paper has outlined data analysis in hermeneutic interpretive phenomenology, including the use of MS Word and its functionality, which was supported by other data display strategies to enhance data visualisation and verification. Techniques described are transferrable to other qualitative methodologies

A call for a stronger articulation of education and role delineation for nurse researchers

Editorial: High‐quality clinical research that generates knowledge and positively impacts services and health outcomes is vital. While rigorous research preparation meets altruistic notions of knowledge creation, outside of university‐based academia, visible and well‐defined clinical career options for nurse researchers are scant. Two articles in this issue propose pathways and expectations for clinical research roles

Taking a chance: the experience of lung volume reduction procedures for chronic obstructive pulmonary disease

Objectives: Lung Volume Reduction Surgery and Endo-Bronchial ValveTM insertion have expanded the thera-peutic choices for chronic obstructive pulmonary disease (COPD). Controversy over efficacy, costs and risks limits access to these therapies. There are no published findings to guide our understanding of the patient’s experience of surgery. The aim of this study is to understand the experience of palliative surgery for COPD. Methods: Merleau-Ponty’s philosophy provided a framework for this Heideggerian phenomenological inquiry. Fifty-eight semi-structured interviews were conducted with 15 patients undergoing lung volume reduction procedures and 14 family members. Results: Patients and families felt they had no option but to ‘take a chance ’ on surgery. Interventions frequently led to regaining lost tasks or easier completion of existing tasks. Where patients did not perceive an increase in things they could ‘do’, surgery allowed some to reclaim their sense of self. Regardless of the outcome, most did not regret their decision for surgery. Discussion: Meanings of surgery are not always tied to the visible, objective measurements of outsiders but may relate to regaining of self. Despite the concerns of some clinicians, patients and families are more likely to accept the risk of morbidity and mortality from surgery than has previously been realized

Health-related quality of life in congenital heart disease surgery in children and young adults: A systematic review and meta-analysis

Background: As survival improves in the congenital heart disease (CHD) population, health-related quality of life (HRQOL) outcomes become increasingly important. While surgery improves survival, poor HRQOL occurs postoperatively and cardiac-related HRQOL outcomes are rarely reported.Objective: To conduct a systematic review and meta-analyses of general and cardiac-related HRQOL in CHD surgical children and young adults.Method: Medline, CINAHL and EMBASE were searched. Quantitative designs with a minimum of 80% CHD surgical patients and mean age ≤18 years compared with healthy controls were included in the review. Data were analysed in RevMan V.5.3 using a random effects model.Outcome measures: General and cardiac-related HRQOL.Results: Studies (n=20) were conducted in high-income countries and included 3808 patients plus 2951 parental reports of patients. HRQOL was worse in postoperative patients with CHD versus healthy controls in all domains with the largest difference seen for physical function (standard mean difference (SMD) of -0.56, 95% CI -0.82 to -0.30). Cardiac-related HRQOL was worse in complex compared with simple CHD with the largest SMD (-0.60, 95% CI -0.80 to -0.40) for symptoms. Heterogeneity ranged from 0% to 90%.Conclusions: CHD surgical patients have substantially worse HRQOL compared with age-matched healthy controls. Strategies should focus on improving HRQOL in this subgroup. Results may not be applicable to low/middle-income countries given the dearth of relevant research