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1.  Medicine partnerships 
Heart  2003;89(Suppl 2):ii19-ii21.
Partial medication compliance, where patients do not take enough of their prescribed medicine to achieve adequate outcomes, is common. Research using electronic monitoring to assess compliance has shown that people take approximately 75% of doses as prescribed, irrespective of the condition being treated or its severity. Erratic compliance often leads to discontinuation of therapy, as treatment is perceived to be ineffective. Compliance decreases as frequency of dosing increases. Inadequate compliance and treatment persistence results in poor outcomes, despite the best efforts of the medical team. It is important to develop and implement a strategy to improve compliance. Simple steps that can be taken include helping patients to select "cues" to remind them to take their tablets, use of dose reminder boxes, and visual feedback of compliance data from electronic monitors.
doi:10.1136/heart.89.suppl_2.ii19
PMCID: PMC1876290  PMID: 12695430
2.  Patients' views on responsibility for the management of musculoskeletal disorders – A qualitative study 
Background
Musculoskeletal disorders are very common and almost inevitable in an individual's lifetime. Enabling self-management and allowing the individual to take responsibility for care is stated as desired in the management of these disorders, but this may be asking more than people can generally manage. A willingness among people to take responsibility for musculoskeletal disorders and not place responsibility out of their hands or on employers but to be shared with medical professionals has been shown. The aim of the present study was to describe how people with musculoskeletal disorders think and reason regarding responsibility for prevention, treatment and management of the disorder.
Methods
Individual interviews with a strategic sample of 20 individuals with musculoskeletal disorders were performed. The interviews were tape-recorded, transcribed verbatim and analysed according to qualitative content analysis.
Results
From the interviews an overarching theme was identified: own responsibility needs to be met. The analysis revealed six interrelated categories: Taking on responsibility, Ambiguity about responsibility, Collaborating responsibility, Complying with recommendations, Disclaiming responsibility, and Responsibility irrelevant. These categories described different thoughts and reasoning regarding the responsibility for managing musculoskeletal disorders. Generally the responsibility for prevention of musculoskeletal disorders was described to lie primarily on society/authorities as they have knowledge of what to prevent and how to prevent it. When musculoskeletal disorders have occurred, health care should provide fast accessibility, diagnosis, prognosis and support for recovery. For long-term management, the individuals themselves are responsible for making the most out of life despite disorders.
Conclusion
No matter what the expressions of responsibility for musculoskeletal disorders are, own responsibility needs to be met by society, health care, employers and family in an appropriate way, with as much or as little of the "right type" of support needed, based on the individual's expectations.
doi:10.1186/1471-2474-10-103
PMCID: PMC2753559  PMID: 19686602
3.  Prognosis of asymptomatic stenosis of the middle cerebral artery 
Background: The risk of ischaemic events in asymptomatic intracranial atherosclerosis is unknown.
Objective: To follow up patients with asymptomatic atherosclerotic middle cerebral artery stenosis (MCAS) to evaluate the long term stroke risk in its territory.
Methods: Consecutive white patients with asymptomatic atherosclerotic MCAS were enrolled. Patients with MCAS of possible or proven non-atherosclerotic origin were excluded. MCAS was assessed by transcranial colour duplex sonography according to published angiography validated criteria. Medical treatment was given at the discretion of the treating physician.
Results: 50 patients were included and followed for (mean (SD)) 815 (351) days; three were lost to follow up. MCAS was <50% in 38 and ⩾50% in 12. No patient suffered an ischaemic event in the MCAS territory; one had a transient ischaemic attack in the contralateral hemisphere. Three patients died, one from a subdural haematoma in the contralateral hemisphere, and two from non-stroke-related causes. Medical treatment at baseline included antithrombotic drugs in 42 cases (antiplatelet agent, n = 39; warfarin, n = 3), and statins in 22; at the end of follow up 45 of the 47 survivors were on antithrombotic drugs (antiplatelet agent, n = 37; warfarin, n = 8), and 30 were on statins.
Conclusions: Asymptomatic MCAS of atherosclerotic origin appears to have a benign long term prognosis with a low risk of ipsilateral stroke in medically treated white patients.
doi:10.1136/jnnp.2003.017863
PMCID: PMC1739243  PMID: 15314120
4.  A qualitative study exploring the experiences of parents of children admitted to seven Dutch pediatric intensive care units 
Intensive Care Medicine  2010;37(2):319-325.
Purpose
To explore parents' experiences during the admission of their children to a pediatric intensive care unit (PICU).
Method
Qualitative method using in-depth interviews. Thematic analysis was applied to capture parents’ experiences. Thirty-nine mothers and 25 fathers of 41 children admitted to seven of the eight PICUs in university medical centers in The Netherlands were interviewed.
Results
Parents were interviewed within 1 month after their child’s discharge from a PICU. Thematic analysis identified 1,514 quotations that were coded into 63 subthemes. The subthemes were categorized into six major themes: attitude of the professionals; coordination of care; emotional intensity; information management; environmental factors; parent participation. Most themes had an overarching relationship representing the array of experiences encountered by parents when their child was staying in a PICU. The theme of emotional intensity was in particular associated with all the other themes.
Conclusions
The findings provided a range of themes and subthemes describing the complexity of the parental experiences of a PICU admission. The subthemes present a systematic and thematic basis for the development of a quantitative instrument to measure parental experiences and satisfaction with care. The findings of this study have important clinical implications related to the deeper understanding of parental experiences and improving family-centered care.
Electronic supplementary material
The online version of this article (doi:10.1007/s00134-010-2074-3) contains supplementary material, which is available to authorized users.
doi:10.1007/s00134-010-2074-3
PMCID: PMC3028069  PMID: 21063674
Critical care; Pediatric; Experiences; Needs; Stress; Family-centered care; Qualitative research
5.  Psychosocial challenges and protective influences for socio-emotional coping of HIV+ adolescents in South Africa. A qualitative investigation 
AIDS care  2010;22(8):970-978.
Introduction
While the roll-out of ART in South Africa should lead to a reduction in mother to child transmission (MTCT), mortality and orphaning, it will also be accompanied by a large number of children entering adolescence and adulthood with a chronic infectious disease. Adolescence is a particularly vulnerable period for HIV-infected people in relation to mental health problems and engagement in high risk behaviours, including non-compliance with medical treatment. The goal of this qualitative study was to develop an understanding of the psychosocial challenges as well as protective influences promoting socio-emotional coping in HIV+ adolescents in order to inform mental health promotion and HIV prevention programming for this population in South Africa.
Method
In-depth qualitative interviews were conducted with HIV+ adolescents (25) and caregivers of HIV+ children (15) at a large HIV/AIDS Clinic in South Africa. Data were analysed thematically using NVivo8 software.
Results
Psycho-social challenges for adolescents included dealing with loss of biological parents in the case of orphans; coming to terms with their HIV+ status including identity difficulties; external stigma and discrimination; and disclosure difficulties. For caregivers, disclosure and lack of financial, family and social support emerged as key challenges. Medication, HIV information, a future orientation and social support was identified as important for coping and general well-being of adolescents, with financial and social support emerging as key for promoting supportive caregiving contexts.
Conclusion
While HIV+ adolescents in South Africa experience similar concerns to those in high income countries, socio-emotional coping may be compromised by increased levels of loss due to the late rollout of ARVS and challenges to caregiving contexts including poverty, stigma and minimally supported foster care arrangements. There is a need for mental health promotion programmes for adolescents to adopt an ecological approach, strengthening protective influences at the individual, interpersonal, community and policy levels.
doi:10.1080/09540121003623693
PMCID: PMC3037257  PMID: 20229370
HIV-infected; adolescents; mental health promotion; HIV prevention; South Africa
6.  Shame! Self-stigmatisation as an obstacle to sick doctors returning to work: a qualitative study 
BMJ Open  2012;2(5):e001776.
Objective
To explore the views of sick doctors on the obstacles preventing them returning to work.
Design
Qualitative study.
Setting
Single participating centre recruiting doctors from all over the UK.
Participants
Doctors who had been away from work for at least 6 months with physical or mental health problems, drug or alcohol problems, General Medical Council involvement or any combination of these, were eligible. Eligible doctors were recruited in conjunction with the Royal Medical Benevolent Fund, the General Medical Council and the Practitioner Health Programme. These organisations approached 77 doctors; 19 participated. Each doctor completed an in-depth semistructured interview. We used a constant comparison method to identify and agree on the coding of the data and the identification of a number of central themes.
Results
The doctors described that being away from work left them isolated and sad. Many experienced negative reactions from their family and some deliberately concealed their problems. Doctors described a lack of support from colleagues and feared a negative response when returning to work. Self-stigmatisation was central to the participants’ accounts; several described themselves as failures and appeared to have internalised the negative views of others.
Conclusions
Self-stigmatising views, which possibly emerge from the belief that ‘doctors are invincible’, represent a major obstacle to doctors returning to work. From medical school onwards cultural change is necessary to allow doctors to recognise their vulnerabilities so they can more easily generate strategies to manage if they become unwell.
doi:10.1136/bmjopen-2012-001776
PMCID: PMC3488732  PMID: 23069770
Mental Health; Occupational & Industrial Medicine; Qualitative Research
7.  Parental food allergy information needs: a qualitative study 
Archives of Disease in Childhood  2007;92(9):771-775.
Objective
To examine information needs and preferences of parents regarding food allergy.
Design
Qualitative study including in‐depth semi‐structured interviews and focus group discussions. Data were audio‐recorded, transcribed verbatim and analysed using the constant comparative method, aided by participant checking of interview summaries, independent reviewers and qualitative analysis software.
Participants
84 parents of children with food allergy.
Setting
Three paediatric allergy clinics and a national consumer organisation.
Results
Most parent participants had received third level education (72%) and 39% had occupational backgrounds in health and education. Parents experienced different phases in their need for information: at diagnosis when there is an intense desire for information, at follow‐up when there is continuing uncertainty about allergy severity and appropriate management, and at new events and milestones. They preferred information to be provided in a variety of formats, with access to reliable individualised advice between clinic appointments, within the context of an ongoing relationship with a health professional. Parents wished to know the reasoning behind doctor's opinions and identified areas of core information content, including unaddressed topics such as what to feed their child rather than what to avoid. Suboptimal information provision was cited by parents as a key reason for seeking second opinions.
Conclusion
Parents with children with food allergies have unmet information needs. Study findings may assist in the design and implementation of targeted educational strategies which better meet parental needs and preferences.
doi:10.1136/adc.2006.114975
PMCID: PMC2084013  PMID: 17488760
food allergy; parent; child; patient education; information needs
8.  Clinicians’ experiences of becoming a clinical manager: a qualitative study 
Background
There has been an increased interest in recruiting health professionals with a clinical background to management positions in health care. We know little about the factors that influence individuals’ decisions to engage in management. The aim of this study is to explore clinicians’ journeys towards management positions in hospitals, in order to identify potential drivers and barriers to management recruitment and development.
Methods
We did a qualitative study which included in-depth interviews with 30 clinicians in middle and first-line management positions in Norwegian hospitals. In addition, participant observation was conducted with 20 of the participants. The informants were recruited from medical and surgical departments, and most had professional backgrounds as medical doctors or nurses. Interviews were analyzed by systemic text condensation.
Results
We found that there were three phases in clinicians’ journey into management; the development of leadership awareness, taking on the manager role and the experience of entering management. Participants’ experiences suggest that there are different journeys into management, in which both external and internal pressure emerged as a recurrent theme. They had not anticipated a career in clinical management, and experienced that they had been persuaded to take the position. Being thrown into the position, without being sufficiently prepared for the task, was a common experience among participants. Being left to themselves, they had to learn management “on the fly”. Some were frustrated in their role due to increasing administrative workloads, without being able to delegate work effectively.
Conclusions
Path dependency and social pressure seems to influence clinicians’ decisions to enter into management positions. Hospital organizations should formalize pathways into management, in order to identify, attract, and retain the most qualified talents. Top managers should make sure that necessary support functions are available locally, especially for early stage clinician managers.
doi:10.1186/1472-6963-12-421
PMCID: PMC3562219  PMID: 23173953
Leadership; Administration and organization; Health services administration; Nurse manager; Doctor; Qualitative research
9.  Taking Antiretroviral Therapy for HIV Infection 
OBJECTIVE
To describe how people with HIV understand and experience the problem of adhering to antiretroviral medication regimens.
DESIGN
We performed a qualitative study based on interviews with HIV-infected patients, including 46 clients of AIDS service organizations, who were sampled according to age, ethnicity, and injection drug use history, and a convenience sample of 15 patients. Interviews were conducted in English or Spanish and were audiotaped and transcribed.
PARTICIPANTS
Of 52 respondents who had prescriptions for antiretroviral therapy, 25 were randomly selected for in-depth analysis. Of these, 5 reported having an AIDS diagnosis, 15 reported symptoms they attributed to HIV, and 5 reported having no symptoms of HIV disease.
MEASUREMENTS AND MAIN RESULTS
Investigators prepared structured abstracts of interviews to extract adherence-related data. One investigator compared the abstracts with the original transcripts to confirm the interpretations, and used the abstracts to organize and classify the findings. Most subjects (84%) reported recent nonadherent behavior, including ceasing treatment, medication “holidays,” sleeping through doses, forgetting doses, skipping doses due to side effects, and following highly asymmetric schedules. Initially, most reported that they were not significantly nonadherent, and many did not consider their behavior nonadherent. Only a minority clearly understood the possible consequences of missing doses. Most said they had not discussed their nonadherence with their physicians.
CONCLUSIONS
Many people rationalize their difficulty in adhering to HIV treatment by deciding that the standard of adherence they can readily achieve is appropriate. Physicians should inquire about adherence-related behavior in specific detail, and ensure that patients understand the consequences of not meeting an appropriate standard.
doi:10.1046/j.1525-1497.2000.90732.x
PMCID: PMC1495712  PMID: 11119181
antiretroviral therapy; adherence; HIV
10.  A thematic analysis of the role of the organisation in building allied health research capacity: a senior managers’ perspective 
Background
Evidence-based practice aims to achieve better health outcomes in the community. It relies on high quality research to inform policy and practice; however research in primary health care continues to lag behind that of other medical professions. The literature suggests that research capacity building (RCB) functions across four levels; individual, team, organisation and external environment. Many RCB interventions are aimed at an individual or team level, yet evidence indicates that many barriers to RCB occur at an organisational or external environment level. This study asks senior managers from a large healthcare organisation to identify the barriers and enablers to RCB. The paper then describes strategies for building allied health (AH) research capacity at an organisational level from a senior managers’ perspective.
Methods
This qualitative study is part of a larger collaborative RCB project. Semi-structured in-depth interviews were conducted with nine allied health senior managers. Recorded interviews were transcribed and NVivo was used to analyse findings and emergent themes were defined.
Results
The dominant themes indicate that the organisation plays an integral role in building AH research capacity and is the critical link in creating synergy across the four levels of RCB. The organisation can achieve this by incorporating research into its core business with a whole of organisation approach including its mission, vision and strategic planning. Critical success factors include: developing a co-ordinated and multidisciplinary approach to attain critical mass of research-active AH and enhance learning and development; support from senior managers demonstrated through structures, processes and systems designed to facilitate research; forming partnerships to increase collaboration and sharing of resources and knowledge; and establishing in internal framework to promote recognition for research and career path opportunities.
Conclusions
This study identifies four key themes: whole of organisation approach; structures, processes and systems; partnerships and collaboration; and dedicated research centres, units and positions. These themes form the foundation of a model which can be applied to assist in achieving synergy across the four levels of RCB, overcome barriers and create an environment that supports and facilitates research development in AH.
doi:10.1186/1472-6963-12-276
PMCID: PMC3464180  PMID: 22920443
Research capacity building; Organisational role; Allied health
11.  Perceptions and attitudes of bhutanese people on Sowa Rigpa, traditional bhutanese medicine: a preliminary study from Thimphu 
Background
Many claims are made that the use of traditional medicine is a substantial and growing part of healthcare behavior around the world. In Bhutan traditional medical practice is one of the country's tangible heritages. The country hosts two forms of traditional medicines: local healing practices and the official traditional medical system known as sowa rigpa, meaning "the science of healing". This paper explores the attitudes on sowa rigpa among Bhutanese living in Thimphu, the capital of Bhutan.
Methods
This study was conducted from May to September 2009. In total, 155 people coming from diverse social backgrounds were randomly selected for the study. The study made use of qualitative as well as quantitative approaches, involving the administration of questionnaires and conducting in-depth interviews.
Results
From the 155 respondents 99% have heard about sowa rigpa, mainly from their friends or relatives. The study showed that sowa rigpa is popular among the respondents since more than half (51%) have said that they have been treated by sowa rigpa doctors. The data revealed that the majority (83%) of the respondents are satisfied with the treatment received.
Conclusion
The Bhutanese healthcare system that integrates sowa rigpa and modern medicine offers an opportunity for active healthcare decision-making by the patients. The improved understanding of the knowledge, attitudes and treatment seeking practices of the participants in the study provides useful information for health practitioners and policy makers to plan health activities. The present preliminary study represents only people living in the capital city of Bhutan. Therefore, a further nationwide study is planned to better understand the role sowa rigpa plays also in rural Bhutan.
doi:10.1186/1746-4269-7-3
PMCID: PMC3024923  PMID: 21457504
12.  Purchasing prescription medication in Mexico without a prescription. The experience at the border. 
Western Journal of Medicine  1992;156(5):512-516.
Prescription medication can often be purchased in Mexico without a physician's prescription. United States residents living along the border may have access to dangerous medications by crossing the border and purchasing them in Mexican pharmacies. We sought to determine the extent and frequency of this behavior in a sample of our ambulatory clinic population. Patients from the Texas Tech University Internal Medicine Clinic were surveyed to collect information about their use of medications, use of alternative sources of health care in Mexico, and purchasing of prescription medication in Juarez, Mexico. More than 80% of patients stated they had purchased prescription-type medication at a pharmacy without a physician's prescription. The most common reasons for buying prescription medication in Mexico were because it was less expensive or because a prescription was not necessary. These data indicate a potential for US residents along the border to take medications in an unregulated manner, a practice that could pose problems for health care providers on both sides of the border.
Images
PMCID: PMC1003314  PMID: 1595276
13.  Smokers' Beliefs and Attitudes about Purchasing Cigarettes on the Internet 
Public Health Reports  2006;121(5):594-602.
SYNOPSIS
Objectives
Our objectives were to explore qualitatively how smokers find out about Internet cigarette sales and what factors motivate them to purchase cigarettes on-line, and to quantitatively describe the Internet cigarette purchasing behaviors and attitudes of Internet cigarette buyers.
Methods
Qualitative in-depth telephone interviews were conducted with 21 adult smokers who had purchased or contemplated purchasing cigarettes on-line. Findings from the qualitative study were used to develop a survey module on Internet cigarette purchasing behavior that was administered to 187 New Jersey adult smokers.
Results
Smokers who purchased cigarettes on-line were primarily motivated by lower prices, which occur because Internet vendors generally sell cigarettes without paying excise taxes for the destination state. Most Internet cigarette buyers first learned about on-line cigarette sales from interpersonal sources who had purchased on-line. New Jersey adult smokers who purchased cheaper cigarettes from the Internet and other lower-taxed sources significantly increased their consumption over time, compared to smokers who reported paying full-price at traditional bricks-and-mortar retail stores.
Conclusions
Policies that have the effect of equalizing Internet cigarette prices with those at retail stores will likely deter smokers from purchasing cigarettes on-line. Internet cigarette vendors should be required to comply with the same provisions that apply to bricks-and-mortar retail vendors and charge appropriate state and local cigarette excise taxes. In the absence of such policies, the sales of cheaper, tax-free cigarettes on-line will undermine the public health benefit of raising cigarette prices.
PMCID: PMC1564449  PMID: 16972513
14.  Patients' ideas about medicines: a qualitative study in a general practice population. 
BACKGROUND. Little attention has been paid to patients' ideas about medicines and such ideas might well have relevance for understanding non-adherence to medication. AIM. This qualitative study set out to describe the ideas about medicines and the self-reported adherence to medication of a general practice population. METHOD. Semistructured interviews were conducted with 30 adult patients (attenders and non-attenders) from two general practices. RESULTS. The main themes emerging from the analysis were: perceived properties of medicines; orientation towards medicines, that is, patients' general preference for taking or not taking medication; and actual usage of medicines. The data revealed that on the one hand much medicine taking was taken for granted and on the other hand that patients had many fears and powerful negative images of medicines. CONCLUSION. Any assessment of the appropriateness of a proposed treatment for an individual patient should include an exploration of his or her preferences, orientation towards medicines and social context.
PMCID: PMC1239021  PMID: 7748635
15.  Linking HIV-positive Jail Inmates to Treatment, Care, and Social Services After Release: Results from a Qualitative Assessment of the COMPASS Program 
Approximately 17% of individuals living with HIV/AIDS pass through the correctional system each year. Jails provide a unique opportunity to diagnose and treat HIV infection among high-risk, transient populations with limited access to medical services. In 2007, the US Health Resources and Services Administration funded a multi-site demonstration project entitled Enhancing Linkages to HIV Primary Care in Jail Settings that aims to improve diagnosis and treatment services for HIV-positive jail detainees and link them to community-based medical care and social services upon release. We performed an evaluation of the Rhode Island demonstration site entitled Community Partnerships and Supportive Services for HIV-Infected People Leaving Jail (COMPASS). Through in-depth qualitative interviews among 20 HIV-positive COMPASS participants in Rhode Island, we assessed how COMPASS impacted access to health care and social services utilization. Most individuals were receiving HIV treatment and care services upon enrollment, but COMPASS enhanced linkage to medical care and follow-up visits for HIV and other co-morbidities for most participants. Several participants were successfully linked to new medical services as a result of COMPASS, including one individual newly diagnosed with HIV and another who had been living with HIV for many years and was able to commence highly active antiretroviral therapy (HAART). While many individuals reported that COMPASS support prevented substance abuse relapse, ongoing substance abuse nevertheless remained a challenge for several participants. Most participants enrolled in one or more new social services as a result of COMPASS, including Medicaid, Supplemental Security Income, food assistance, and housing programs. The primary unmet needs of COMPASS participants were access to mental health services and stable housing. Intensive case management of HIV-positive jail detainees enhances access to medical and social support services and helps prevent relapse to substance abuse. Expanding intensive case management programs, public housing, and mental health services for recently released HIV-positive detainees should be public health priorities.
doi:10.1007/s11524-010-9496-7
PMCID: PMC3005089  PMID: 21046470
HIV/AIDS; Treatment and care; Substance abuse; Jail; Corrections; Linkage
16.  Remedy or cure? Lay beliefs about over-the-counter medicines for coughs and colds. 
BACKGROUND: Over 500 million is spent in the United Kingdom every year on over-the-counter medicines for coughs and colds. Evidence for their pharmacological efficacy is lacking. AIM: To examine lay beliefs about over-the-counter medicines for coughs and colds. To explore whether the distinction between symptom relief and cure has the same relevance to lay people as it does to medical professionals. DESIGN OF STUDY: Small pilot study using qualitative techniques. SETTING: Variety sample of 11 patients attending the National Health Service walk-in centre, Birmingham, England. METHOD: In-depth semi-structured interviews, including pile-sorting and fictional case histories, were used to explore participants' beliefs about the effects of over-the-counter medicines on coughs and colds. RESULTS: Eight of the 11 participants believed that at least one over the-counter cough medicine (most frequently Benylin for Chesty Coughs) could shorten, or "cure", an illness. Five participants thought that the majority of the medicines that they recognised would speed recovery rather than just relieve symptoms. CONCLUSIONS: There is a common confusion in the lay person's mind between the ability of a medicine to relieve symptoms, and its ability to cure a disease or to hasten recovery. This misunderstanding may affect the demand for primary care consultations.
PMCID: PMC1314801  PMID: 14965387
17.  Use of mucin like cancer associated antigen (MCA) in the management of breast cancer. 
British Journal of Cancer  1991;63(6):1000-1004.
A study of the epithelial mucin marker MCA was made in 233 patients with breast cancer. Only 6% of 72 patients with Stage I-III disease had a raised MCA (greater than 15 U ml-1) when assessed following surgical treatment of the primary tumour. Raised levels of MCA occurred in one out of 20 (10%) patients with stable local recurrence, and six out of ten (60%) patients with progressive local recurrence. In 115 patients with metastases 89 (77%) had a raised MCA, tumour extent and disease activity both influenced the MCA level. The change of MCA level during the treatment of 11 cases of local recurrence and 55 cases of metastatic disease showed a 64 and 84% concordance respectively with the change in clinical status. Coincidental measurement of MCA and bone scans showed a raised MCA in one out of 63 (1.5%) patients with negative or equivocal scans, and 26 out of 35 (74%) with positive scans. MCA provides a useful marker for the monitoring of the treatment of local recurrence and metastatic disease, and an independent indicator of the effects of changes in treatment.
PMCID: PMC1972559  PMID: 2069833
18.  Reasons for Repeated Medical Visits Among Patients with Chronic Back Pain 
OBJECTIVE
This study identifies the key motivations of patients repeatedly seeking medical care for chronic back problems.
DESIGN
We conducted one-on-one, in-depth interviews with patients to discuss their experiences with low back pain and its care. To validate our interpretation of the qualitative data, participants were mailed questionnaires listing the themes identified in the interviews and asked to rate the importance to them of each of the themes.
SETTING
Managed health care plans in Atlanta, Dallas, and Seattle.
PARTICIPANTS
Fifty-four patients (37% male, 63% female) who were 25 to 65 years of age and had three or more medically attended episodes of low back pain during the 3 years preceding the study.
MAIN RESULTS
In describing their motivations for seeking medical care for back pain, nearly all participants cited difficulty in performing normal activities and the desire to discover the cause of the pain. Other motivations for seeking medical care for back pain included increased pain and the desire for a diagnostic test or a new treatment. Many of the verbalized reasons for repeated medical visits among patients with chronic back pain are probably best understood as seeking validation of their suffering.
CONCLUSIONS
Patients with chronic back pain report many unmet needs and expectations. Overall satisfaction might be improved if clinicians elicit patients' views of underlying causes and their expectations from office visits.
doi:10.1046/j.1525-1497.1998.00093.x
PMCID: PMC1496956  PMID: 9613883
back pain; low back pain; chronic pain; repeated medical visits
19.  Have the public's expectations for antibiotics for acute uncomplicated respiratory tract infections changed since the H1N1 influenza pandemic? A qualitative interview and quantitative questionnaire study 
BMJ Open  2012;2(2):e000674.
Objective
To investigate the effect of the H1N1 influenza pandemic on the public's expectations for a general practice consultation and antibiotic for acute respiratory illness.
Design
Mixed methods.
Participants
Qualitative interviews: 17 participants with acute respiratory tract infection (RTI) visiting English pharmacies. Face-to-face survey: about 1700 adults aged 15 years and older were recruited from households in England in January 2008, 2009 and 2011.
Results
The qualitative data indicated that the general public had either forgotten about the ‘swine flu’ (H1N1 influenza) pandemic or it did not concern them as it had not affected them directly or affected their management of their current RTI illness. Between 2009 and 2011, we found that there was little or no change in people's expectations for antibiotics for runny nose, colds, sore throat or cough, but people's expectations for antibiotics for flu increased (26%–32%, p=0.004). Of the 1000 respondents in 2011 with an RTI in the previous 6 months, 13% reported that they took care of themselves without contacting their general practitioners and would not have done so before the pandemic, 9% reported that they had contacted their doctor's surgery and would not have done so before the pandemic and 0.6% stated that they had asked for antibiotics and would not have done so before the pandemic. In 2011, of 123 respondents with a young child (0–4 years) having an RTI in the previous 6 months, 7.4% requested antibiotics and would not have done so before the pandemic. Unprompted, 20% of respondents thought Tamiflu© (oseltamivir) was a vaccine.
Conclusions
Expectations of the general public for a consultation or antibiotics with an RTI are similar now to before the H1N1 influenza pandemic; therefore, public antibiotic campaign messages and general practice advice to patients can remain unchanged. Parents with young children and those with personal experience of the H1N1 influenza are more likely to consult and will need more reassurance. The public need more education about Tamiflu©.
Article summary
Article focus
Hypothesis
The H1N1 (2009) pandemic has ‘medicalised’ acute respiratory illness presenting with flu-like symptoms, including cough, cold, sore throat and fever.
The general public may now have a greater expectation that they should seek a consultation with a health professional and have a greater expectation for antibiotics when they next have an acute respiratory illness presenting with flu-like symptoms, including cough, cold, sore throat and fever.
Aims
To determine if expectations for a consultation or an anti-infective have changed as a result of the publics' experiences of the recent (2009) H1N1 influenza pandemic and to explore the publics' understanding of anti-infectives.
Key messages
The H1N1 influenza pandemic has not changed the general public's expectations for a general practitioner's consultation or antibiotics when they have a runny nose, cough, cold or sore throat but may have increased people's expectations for antibiotics for influenza.
Most have either forgotten about the influenza outbreak or it did not concern them as it had not affected them directly.
The smaller subsets of the public with young children and those who have had suspected or confirmed H1N1 influenza themselves are now more likely to consult and request an antibiotic for an RTI and, therefore, these groups will need more guidance and reassurance.
A fifth of the public believe that Tamiflu© (oseltamivir) is a vaccine, implying that enhanced information sharing is needed in this area.
Strengths and limitations of this study
This was a large survey of the general population, repeating some of the questions asked before the 2009 H1N1 flu epidemic, using the same sampling methods.
The qualitative interviews had recruitment problems with many potential interviewees not being at home when telephoned. However, the purpose of qualitative interviews was mainly to enrich our data, and they did help explain our quantitative findings.
The questionnaire survey asked to recall their most recent RTI in the previous 6 months and what actions they took on that occasion. This will be subject to some recall bias.
doi:10.1136/bmjopen-2011-000674
PMCID: PMC3323811  PMID: 22457479
20.  Why People Do, or Do Not, Immediately Contact Emergency Medical Services following the Onset of Acute Stroke: Qualitative Interview Study 
PLoS ONE  2012;7(10):e46124.
Objectives
To identify the reasons why individuals contact, or delay contacting, emergency medical services in response to stroke symptoms.
Design
Qualitative interview study with a purposive sample of stroke patients and witnesses, selected according to method of accessing medical care and the time taken to do so. Data were analysed using the Framework approach.
Setting
Area covered by three acute stroke units in the north east of England.
Participants
Nineteen stroke patients and 26 witnesses who had called for help following the onset of stroke symptoms.
Results
Factors influencing who called emergency medical services and when they called included stroke severity, how people made sense of symptoms and their level of motivation to seek help. Fear of the consequences of stroke, including future dependence or disruption to family life, previous negative experience of hospitals, or involving a friend or relations in the decision to access medical services, all resulted in delayed admission. Lack of knowledge of stroke symptoms was also an important determinant. Perceptions of the remit of medical services were a major cause of delays in admission, with many people believing the most appropriate action was to telephone their GP. Variations in the response of primary care teams to acute stroke symptoms were also evident.
Conclusions
The factors influencing help-seeking decisions are complex. There remains a need to improve recognition by patients, witnesses and health care staff of the need to treat stroke as a medical emergency by calling emergency medical services, as well as increasing knowledge of symptoms of stroke among patients and potential witnesses. Fear, denial and reticence to impose on others hinders the process of seeking help and will need addressing specifically with appropriate interventions. Variability in how primary care services respond to stroke needs further investigation to inform interventions to promote best practice.
Trial Registration
UK Clinical Research Network UKCRN 6590
doi:10.1371/journal.pone.0046124
PMCID: PMC3464281  PMID: 23056247
21.  We Never Thought This Would Happen: Transitioning Care of Adolescents with Perinatally-Acquired HIV Infection from Pediatrics to Internal Medicine 
AIDS care  2009;21(10):1222-1229.
Purpose
Transitioning the medical care of children with perinatally-acquired HIV from pediatric care to internal medicine practices has become increasingly important as newer therapies prolong survival. The study aims to describe challenges to caring for these adolescents and the potential barriers to transitioning them to internal medicine-based care.
Methods
Qualitative study in which data were gathered from open-ended interviews conducted from November 2005-April 2006 with 18 adolescents with HIV, 15 of their principal guardians, and 9 pediatric health care providers from the Yale Pediatric AIDS Care Program, New Haven, Connecticut.
Results
Issues of stigma played a prominent role in both the challenges to care and barriers to transitioning care. Challenges to care were: (1) poor adherence to medication regimens; (2) adolescent sexuality; and (3) disorganized social environments. Potential barriers to transitioning care were: (1) families’ negative perceptions of and experiences with stigma of HIV disease--which undermined the desire to meet new providers; (2) perceived and actual lack of autonomy-- pediatric providers feared that staff in adult clinics would demand a level of independence that adolescents did not have; and (3) difficulty letting-go of relationships-- adolescents, guardians, and providers described a familial relationship and expressed anxiety about terminating their relationships.
Conclusion
Understanding these challenges and barriers can inform both pediatric and adult HIV care providers and enable them to create successful transition programs, with the goal of improving retention and follow-up to care.
doi:10.1080/09540120902730054
PMCID: PMC2797130  PMID: 20024697
transition; adolescents; special health care needs; HIV/AIDS
22.  Genome Rearrangements Detected by SNP Microarrays in Individuals with Intellectual Disability Referred with Possible Williams Syndrome 
PLoS ONE  2010;5(8):e12349.
Background
Intellectual disability (ID) affects 2–3% of the population and may occur with or without multiple congenital anomalies (MCA) or other medical conditions. Established genetic syndromes and visible chromosome abnormalities account for a substantial percentage of ID diagnoses, although for ∼50% the molecular etiology is unknown. Individuals with features suggestive of various syndromes but lacking their associated genetic anomalies pose a formidable clinical challenge. With the advent of microarray techniques, submicroscopic genome alterations not associated with known syndromes are emerging as a significant cause of ID and MCA.
Methodology/Principal Findings
High-density SNP microarrays were used to determine genome wide copy number in 42 individuals: 7 with confirmed alterations in the WS region but atypical clinical phenotypes, 31 with ID and/or MCA, and 4 controls. One individual from the first group had the most telomeric gene in the WS critical region deleted along with 2 Mb of flanking sequence. A second person had the classic WS deletion and a rearrangement on chromosome 5p within the Cri du Chat syndrome (OMIM:123450) region. Six individuals from the ID/MCA group had large rearrangements (3 deletions, 3 duplications), one of whom had a large inversion associated with a deletion that was not detected by the SNP arrays.
Conclusions/Significance
Combining SNP microarray analyses and qPCR allowed us to clone and sequence 21 deletion breakpoints in individuals with atypical deletions in the WS region and/or ID or MCA. Comparison of these breakpoints to databases of genomic variation revealed that 52% occurred in regions harboring structural variants in the general population. For two probands the genomic alterations were flanked by segmental duplications, which frequently mediate recurrent genome rearrangements; these may represent new genomic disorders. While SNP arrays and related technologies can identify potentially pathogenic deletions and duplications, obtaining sequence information from the breakpoints frequently provides additional information.
doi:10.1371/journal.pone.0012349
PMCID: PMC2930846  PMID: 20824207
23.  Influencing sceptical staff to become supporters of service improvement: a qualitative study of doctors' and managers' views 
Quality & safety in health care  2004;13(2):108-114.
Objective: To explore scepticism and resistance towards changes in working practice designed to achieve service improvement. Two principal questions were studied: (1) why some people are sceptical or resistant towards improvement programmes and (2) what influences them to change their minds.
Methods: Semi-structured qualitative interviews were conducted with 19 clinicians and 19 managers who held national and regional roles in two national programmes of service improvement within the NHS involving systematic organisational changes in working practices: the National Booking Programme and the Cancer Services Collaborative (now the Cancer Services Collaborative Improvement Partnership).
Results: Scepticism and resistance exist in all staff groups, especially among medical staff. Reasons include personal reluctance to change, misunderstanding of the aims of improvement programmes, and a dislike of the methods by which programmes have been promoted. Sceptical staff can be influenced to become involved in improvement, but this usually takes time. Newly won support may be fragile, requiring ongoing evidence of benefits to be maintained.
Conclusions: The support of health service staff, particularly doctors, is crucial to the spread and sustainability of the modernisation agenda. Scepticism and resistance are seen to hamper progress. Leaders of improvement initiatives need to recognise the impact of scepticism and resistance, and to consider ways in which staff can become positively engaged in change.
doi:10.1136/qshc.2003.007450
PMCID: PMC1743804  PMID: 15069217
24.  Quality assurance of medicine at home 
Background
In the daily work at a healthcare center we often come across different problems with elderly people's medicine prescriptions. We call it ‘compliance’. A lot can go wrong, so we wanted to do a medicine review as an assurance of medicine at home.
Purpose
We decided to do this review as a project together with pharmacists, nurses, general practitioners (GP) and help aid from the community. We wanted the elderly to have an accurate medicine list in their home! We knew that the project had do be worked with ‘Integrated care’ because of the number of people the elderly meet in their homes every day.
Method
A primary care nurse made the reviews in the elderly person's home. The nurse telephoned and told them that she intended to do the review and asked if it was okay to come. She brought a chart to fill in with questions about how and when people take their medicine. After the review the nurse had the list organized and contacted the GP or pharmacist to ask whether there were things that should be altered for this person. Then they would go through the chart again and finally they could write a new or an updated medicine list.
In order to be admitted into the review study people had to be over 75 years old, living in their private homes, use 3 or more medicines, have been admitted to hospital recently and/or the GP finds the medicine list incorrect.
Results
More than 250 persons were reviewed in 8 months. Average age=83 years; average medicine per person=7,8; in 76% of all reviews the lists were OK; interesting notable errors like: doctor's order, but patient has chosen not to take the medicine (27%); patient takes a medicine without doctor's order (15%); same medicine but changed dose (26%); patient does not understand the prescription (13%); patient has the wrong prescription (10%)
Discussion
This project is ongoing all through 2008 and we wish to review as many people as possible in our region. We think this is a way of working that can be helpful for both staff and patients. We hope to educate nurses in this method so our patients will have accurate medicine lists also in the future!
PMCID: PMC2430281
care for the elderly; home care; quality of care; safety; medication
25.  ABC for people with HIV: responses to sexual behaviour recommendations among people receiving antiretroviral therapy in Jinja, Uganda 
Culture, Health & Sexuality  2011;13(5):529-543.
People living with HIV who are taking antiretroviral therapy (ART) are increasingly involved in ‘positive prevention’ initiatives. These are generally oriented to promoting abstinence, ‘being faithful’ (partner reduction) and condom use (ABC). We conducted a longitudinal qualitative study with people living with HIV using ART, who were provided with adherence education and counselling support by a Ugandan nongovernmental organisation, The AIDS Support Organisation (TASO). Forty people were selected sequentially as they started ART, stratified by sex, ART delivery mode (clinic- or home-based) and HIV progression stage (early or advanced) and interviewed at enrolment and at 3, 6, 18 and 30 months. At initiation of ART, participants agreed to follow TASO's positive-living recommendations. Initially poor health prevented sexual activity. As health improved, participants prioritised resuming economic production and support for their children. With further improvements, sexual desire resurfaced and people in relationships cemented these via sex. The findings highlight the limitations of HIV prevention based on medical care/personal counselling. As ART leads to health improvements, social norms, economic needs and sexual desires increasingly influence sexual behaviour. Positive prevention interventions need to seek to modify normative and economic influences on sexual behaviour, as well as to provide alternatives to condoms.
doi:10.1080/13691058.2011.558593
PMCID: PMC3082777  PMID: 21390948
HIV/AIDS; anti-retroviral therapy; sexual behaviour; Uganda

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