Chronic illness in non-heterosexual contexts: an online survey of experiences

In this article we contribute to the expansion of lesbian, gay, bisexual, transgender and queer (LGBTQ) health psychology beyond the confines of sexual health by examining the experiences of lesbian, gay and bisexual people living with non-HIV related chronic illness. Using a (predominantly) qualitative online survey, the perspectives of 190 LGB people with 52 different chronic illnesses from eight countries were collected. The five most commonly reported physical conditions were arthritis, hypertension, diabetes, asthma and chronic fatigue syndrome. Our analysis focuses on four themes within participants’ written comments: (1) ableism within LGBT communities; (2) isolation from LGBT communities and other LGB people living with chronic illness; (3)heteronormativity within sources of information and support and; (4) homophobia from healthcare professionals. We conclude by suggesting that LGBTQ psychology could usefully draw on critical health psychology principles and frameworks to explore non-heterosexual’s lived experiences of chronic illness, and also that there remains a need for specifically targeted support groups and services for LGB people with chronic illnesses.

Health promotion for chronic obstructive pulmonary disease

Peter, a 45 year old male, enters the pharmacy and asks, 'do you have something to stop a cough?' On questioning you find out that Peter has an irritating cough that has been off and on for the past few weeks since winter started. He coughs up phlegm every now and then, mostly upon waking. He has tried some cough mixture that he bought at the supermarket but is looking for something stronger. He states that he does not have any medical history or allergies and does not take any medication. He does feel that he can't exercise as much as he used to as he gets more breathless these days.

Medicines optimisation for young people with juvenile arthritis and other long-term conditions:system-level barriers to engagement

To explore the views of pharmacy and rheumatology stakeholders about system-related barriers to medicines optimisation activities with young people with long-term conditions. A three-phase consensus-building study comprising (1) focus groups with community and hospital pharmacists; (2) semi-structured telephone interviews with lay and professional adolescent rheumatology stakeholders and pharmacy policymakers, and (3) multidisciplinary discussion groups with community and hospital pharmacists and rheumatology staff. Qualitative verbatim transcripts from phases 1 and 2 were subjected to framework analysis. Themes from phase 1 underpinned a briefing for phase 2 interviewees. Themes from phases 1 and 2 generated elements of good pharmacy practice and current/future pharmacy roles for ranking in phase 3. Results from phase 3 prioritisation and ranking exercises were captured on self-completion data collection forms, entered into an Excel spreadsheet and subjected to descriptive statistical analysis. Institutional ethical approval was given by Aston University Health and Life Sciences Research Ethics Committee. Four focus groups were conducted with 18 pharmacists across England, Scotland and Wales (7 hospital, 10 community and 1 community/public health). Fifteen stakeholders took part in telephone interviews (3 pharmacist commissioners; 2 pharmacist policymakers; 2 pharmacy staff members (1 community and 1 hospital); 4 rheumatologists; 1 specialist nurse, and 3 lay juvenile arthritis advocates). Twenty-five participants took part in three discussion groups in adolescent rheumatology centres across England and Scotland (9 community pharmacists; 4 hospital pharmacists; 6 rheumatologists; 5 specialist nurses, and 1 physiotherapist). In all phases of the study, system-level issues were acknowledged as barriers to more engagement with young people and families. Community pharmacists in the focus groups reported that opportunities for engaging with young people were low if parents collected prescriptions alone, which was agreed by other stakeholders. Moreover, institutional/company prescription collection policies – an activity largely disallowed for a young person under 16 without an accompanying parent - were identified by hospital and community pharmacists as barriers to open discussion and engagement. Few community pharmacists reported using Medicines Use Review (England/Wales) or Chronic Medication Service (Scotland) as a medicines optimisation activity with young people; many were unsure about consent procedures. Despite these limitations, rheumatology stakeholders ranked highly the potential of pharmacists empowering young people with general health care skills, such as repeat prescription ordering. The pharmacy profession lacks vision for its role in the care of young people with long-term conditions. Pharmacists and rheumatology stakeholders identified system-level barriers to more engagement with young people who take medicines regularly. We acknowledge that the modest number of participants may have had a specific interest and thus bias for the topic, but this underscores their frank admission of the challenges. Professional guidance and policy, practice frameworks and institutional/company policies must promote flexibility for pharmacy staff to recognise and empower young people who are able to give consent and take responsibility for medicines activities. This will increase mutual confidence and trust, and foster pharmacy’s role in teaching general health care skills. In this way, pharmacists will be able to build long-term relationships with young people and families.

Parenting a child with chronic illness as they transition into adulthood:a systematic review and thematic synthesis of parents’ experiences

Objective - To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services. Methods - Five databases were systematically searched for qualitative articles examining parents’ views and experiences of their child’s healthcare transition. Papers were quality assessed and thematically synthesised. Results - Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child’s progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child’s readiness, wellness, competence and long-term condition impacted on the child’ progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child’s growing independence. Conclusion - Parents can be key facilitators of their child’s healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers. Practice Implications - Interventions are needed which address the transitional care needs of parents as well as young people.

Children with special health care needs: Comparison of the effects of home care setting, prescribed pediatric extended care setting, and long-term care setting on child and family health outcomes and health care service use

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL™ Generic Core Module for child health and functioning, PedsQL™ Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.

Relation of health related hardiness to health perception and psychosocial adaptation in adult hispanics with chronic hepatitis C

The purpose of this study was to investigate the role of hardiness in health perception and psychosocial adaptation in adult hispanics with chronic hepatitis C (n = 32). The Health Related Hardiness Scale and the Psychosocial Adaptation to Illness Scale were administered to 32 adult hispanics diagnosed with chronic heptitis C at a gastroenterology center. The results indicate that a comparison of subjects with low and high hardiness scores did not reveal significant differences on any of the PAIS domains (health care orientation, sexual relationships, psychological distress, vocational, domestic and social environments). Furthermore, hardiness subscales of control and committment did not have any influence on patient's psychosocial adaptation nor in its domains. However, a comparison of subjects with low and high challenge scores indicates that those with low challenge had lower total psychosocial adaptation scores (M = 5.55, SD = 2.13) than subjects with high challenge scores (M = 4.24, SD = .67) ,t = (1, 30) = 2.34, p < 0.05. Differences were also found for the domains of health care orientation, psychological distress, social and vocational environment. Lastly, there were significant differences on perceived health rating (poor, fair, and good) for the total hardiness score (F = (2,29) =5.49, p < 0.05), control (F =(2,29) = 4.09, p < 0.05), committment (F=(2,29) = 3.76, p < 0.05) and challenge (F=(2,29)= 4.92, p < 0.05). Thus, those patients who rated their health as poor had lower hardiness levels. Findings have implications for promoting hardiness for better health perception and in certain aspects of psychosocial adaptations in adult hispanics with chronic hepatitis C.

Chronic pelvic pain in women of reproductive and post-reproductive age : a population-based study

Abimbola Ayorinde’s PhD funded by the Medical Research Council. This study was funded by the British Pain Society (Mildred Clulow Award) and preparatory work by National Health Service Grampian.

Mobile Clinics & Bundled Healthcare: An Exploration of Patient Perceptions of the SughaVazhvu Approach to Chronic Care Management

As the burden of non-communicable diseases increases worldwide, it is imperative that health systems adopt delivery approaches that will enable them to provide accessible, high-quality, and low-cost care to patients that need consistent management of their lifelong conditions. This is especially true in low- and middle-income country settings, such as India, where the disease burden is high and the health sector resources to address it are limited. The subscription-based, managed care model that SughaVazhvu Healthcare—a non-profit social enterprise operating in rural Thanjavur, Tamil Nadu—has deployed demonstrates potential for ensuring continuity of care among chronic care patients in resource-strained areas. However, its effectiveness and sustainability will depend on its ability to positively impact patient health status and patient satisfaction with the care management they are receiving. Therefore, this study is not only a program appraisal to aid operational quality improvement of the SughaVazhvu Healthcare model, but also an attempt to identify the factors that affect patient satisfaction among individuals with chronic conditions actively availing services.

Effect of road quality in structural health monitoring under operational conditions

The effect of unevenness in a bridge deck for the purpose of Structural Health Monitoring (SHM) under operational conditions is studied in this paper. The moving vehicle is modelled as a single degree of freedom system traversing the damaged beam at a constant speed. The bridge is modelled as an Euler-Bernoulli beam with a breathing crack, simply supported at both ends. The breathing crack is treated as a nonlinear system with bilinear stiffness characteristics related to the opening and closing of crack. The unevenness in the bridge deck considered is modelled using road classification according to ISO 8606:1995(E). Numerical simulations are conducted considering the effects of changing road surface classes from class A - very good to class E - very poor. Cumulant based statistical parameters, based on a new algorithm are computed on stochastic responses of the damaged beam due to passages of the load in order to calibrate the damage. Possibilities of damage detection and calibration under benchmarked and non-benchmarked cases are considered. The findings of this paper are important for establishing the expectations from different types of road roughness on a bridge for damage detection purposes using bridge-vehicle interaction where the bridge does not need to be closed for monitoring.

Effects of vehicle speed in structural health monitoring from operational conditions of bridges

The effects of vehicle speed for Structural Health Monitoring (SHM) of bridges under operational conditions are studied in this paper. The moving vehicle is modelled as a single degree oscillator traversing a damaged beam at a constant speed. The bridge is modelled as simply supported Euler-Bernoulli beam with a breathing crack. The breathing crack is treated as a nonlinear system with bilinear stiffness characteristics related to the opening and closing of crack. The unevenness of the bridge deck is modelled using road classification according to ISO 8606:1995(E). The stochastic description of the unevenness of the road surface is used as an aid to monitor the health of the structure in its operational condition. Numerical simulations are conducted considering the effects of changing vehicle speed with regards to cumulant based statistical damage detection parameters. The detection and calibration of damage at different levels is based on an algorithm dependent on responses of the damaged beam due to passages of the load. Possibilities of damage detection and calibration under benchmarked and non-benchmarked cases are considered. Sensitivity of calibration values is studied. The findings of this paper are important for establishing the expectations from different vehicle speeds on a bridge for damage detection purposes using bridge-vehicle interaction where the bridge does not need to be closed for monitoring. The identification of bunching of these speed ranges provides guidelines for using the methodology developed in the paper.

The Worsening of the employment and work conditions and its relationship to the self-perceived health in European working population. Relevance and effects of the latest socioeconomic crisis

The recent crisis of the capitalistic economic system has altered the working conditions and occupations in the European Union. The recession situation has accelerated trends and has brought transformations that have been observed before. Changes have not looked the same way in all the countries of the Union. The social occupation norms, labour relations models and the type of global welfare provision can help underline some of these inequalities. Poor working conditions can expose workers to situations of great risk. This is one of the basic assumptions of the theoretical models and analytical studies of the approach to the psychosocial work environment. Changes in working conditions of the population seems to be important to explain in the worst health states. To observe these features in the current period of economic recession it has made a comparative study of trend through the possibilities of the European Working Conditions Survey in the 2005 and 2010 editions. It has also set different multivariate logistic regression models to explore potential partnerships with the worst conditions of employment and work. It seems that the economic crisis has intensified changes in working conditions and highlighted the effects of those conditions on the poor health of the working population. This conclusion can’t be extended for all EU countries; some differences were observed in terms of global welfare models.

SYSTEMATIC REVIEW AND META-ANALYSIS: EFFECTS OF WALKING EXERCISE IN CHRONIC MUSCULOSKELETAL PAIN

SYSTEMATIC REVIEW AND META-ANALYSIS: EFFECTS OF WALKING EXERCISE IN CHRONIC MUSCULOSKELETAL PAIN O'Connor S.R.1, Tully M.A.2, Ryan B.3, Baxter D.G.3, Bradley J.M.1, McDonough S.M.11University of Ulster, Health & Rehabilitation Sciences Research Institute, Newtownabbey, United Kingdom, 2Queen's University, UKCRC Centre of Excellence for Public Health (NI), Belfast, United Kingdom, 3University of Otago, Centre for Physiotherapy Research, Dunedin, New ZealandPurpose: To examine the effects of walking exercise on pain and self-reported function in adults with chronic musculoskeletal pain.Relevance: Chronic musculoskeletal pain is a major cause of morbidity, exerting a substantial influence on long-term health status and overall quality of life. Current treatment recommendations advocate various aerobic exercise interventions for such conditions. Walking may represent an ideal form of exercise due to its relatively low impact. However, there is currently limited evidence for its effectiveness.Participants: Not applicable.Methods: A comprehensive search strategy was undertaken by two independent reviewers according to the preferred reporting items for systematic reviews and meta-analyses (PRISMA) and the recommendations of the Cochrane Musculoskeletal Review Group. Six electronic databases (Medline, CINAHL, PsychINFO, PEDro, Sport DISCUS and the Cochrane Central Register of Controlled Trials) were searched for relevant papers published up to January 2010 using MeSH terms. All randomised or non-randomised studies published in full were considered for inclusion. Studies were required to include adults aged 18 years or over with a diagnosis of chronic low back pain, osteoarthritis or fibromyalgia. Studies were excluded if they involved peri-operative or post-operative interventions or did not include a comparative, non exercise or non-walking exercise control group. The U.S. Preventative Services Task Force system was used to assess methodological quality. Data for pain and self-reported function were extracted and converted to a score out of 100.Analysis: Data were pooled and analyzed using RevMan (v.5.0.24). Statistical heterogeneity was assessed using the X2 and I2 test statistics. A random effects model was used to calculate the mean differences and 95% CIs. Data were analyzed by length of final follow-up which was categorized as short (≤8 weeks post randomisation), mid (2-12 months) or long-term (>12 months).Results: A total of 4324 articles were identified and twenty studies (1852 participants) meeting the inclusion criteria were included in the review. Overall, studies were judged to be of at least fair methodological quality. The most common sources of likely bias were identified as lack of concealed allocation and failure to adequately address incomplete data. Data from 12 studies were suitable for meta-analysis. Walking led to reductions in pain at short (<8 weeks post randomisation) (-8.44 [-14.54, -2.33]) and mid-term (>8 weeks - 12 month) follow-up (-9.28 [-16.34, -2.22]). No effect was observed for long-term (>12 month) data (-2.49 [-7.62, 2.65]). For function, between group differences were observed for short (-11.57 [-16.06, -7.08]) and mid-term data (-13.26 [-16.91, -9.62]). A smaller effect was also observed at long-term follow-up (-5.60 [-7.70, -3.50]).Conclusions: Walking interventions were associated with statistically significant improvements in pain and function at short and mid-term follow-up. Long-term data were limited but indicated that these effects do not appear to be maintained beyond twelve months.Implications: Walking may be an effective form of exercise for individuals with chronic musculoskeletal pain. However, further research is required which examines longer term follow-up and dose-response issues in this population.Key-words: 1. Walking exercise 2. Musculoskeletal pain 3. Systematic reviewFunding acknowledgements: Department of Employment and Learning, Northern Ireland.Ethics approval: Not applicable.