Mary Boulton

• BA, PhD
• Professor at Oxford Brookes University

Aims: Explore the experience of living with fatigue in persons with advanced heart failure. Design: Single-setting, qualitative interview study. Methods: In-depth interviews were conducted from November 2012 – June 2013. Participant responses to open-ended questions were analysed using thematic analysis. Inclusion criteria: 18 years and older, diag...

Background Adjuvant endocrine therapy (AET) is prescribed to women for 5–10 years after treatment for estrogen receptor positive (ER+ve), early-stage breast cancer. AET has proven effectiveness in reducing the risk of recurrence of breast cancer and mortality. However, adherence is known to be suboptimal with around 20% discontinuing by 2 years and...

Introduction : Despite evidence of the efficacy of Adjuvant Endocrine Therapy (AET) in reducing the risk of recurrence and mortality after treatment for primary breast cancer, adherence to AET is suboptimal. This study aimed to explore factors that influence adherence and non-adherence to adjuvant endocrine therapy (AET) following breast cancer to...

Introduction Despite evidence of the efficacy of adjuvant endocrine therapy (AET) in reducing the risk of recurrence and mortality after treatment for primary breast cancer, adherence to AET is suboptimal. This study aimed to explore factors that influence adherence and nonadherence to AET following breast cancer to inform the development of suppor...

Objectives: To evaluate the Beliefs about Medicine Questionnaire to explore adherence to adjuvant endocrine therapy after treatment for breast cancer (BMQ-AET). Method: Factor structure of the BMQ-AET was explored alongside internal consistency, convergent validity and acceptability. Results: The BMQ-AET Specific Scale fitted the original 10 item m...

This study evaluated the Beliefs about Medicine Questionnaire to explore adherence to adjuvant endocrine therapy after treatment for breast cancer (BMQ-AET). Factor structure of the BMQ-AET was explored alongside internal consistency, convergent validity and acceptability. The BMQ-AET Specific Scale fitted the original 10 item model. Internal consi...

Background Translational and applied health research, and the workforce needed to deliver it, have grown substantially in the last 10 years and this growth is likely to continue. However, there are few good empirical studies of the workforce and only limited evidence on which to base future policy and practice. Aim To provide a better understandin...

Adherence to adjuvant endocrine therapy (AET) following breast cancer is known to be suboptimal despite its known efficacy in reducing recurrence and mortality. This study aims to investigate factors associated with non-adherence and inform the development of interventions to support women and promote adherence. A questionnaire survey to measure le...

Aims: To explore how patients with CHF describe their experiences of breathlessness, the pattern of their breathlessness, how daily life is affected and how they adjust to and manage these symptoms. Background: Chronic Heart Failure (CHF) is a highly prevalent syndrome often with poor outcomes and in a patient group who are predominately elderly...

PURPOSE/OBJECTIVES: To explore the experiences of young adults with Hodgkin lymphoma during the first year following the end of initial treatment. . RESEARCH APPROACH: A qualitative grounded theory study. . SETTING: Interviews with patients recruited from three cancer centers in England. . PARTICIPANTS: 10 Hodgkin lymphoma survivors (four men a...

Background Informal carers face many challenges in caring for patients with palliative care needs. Selecting suitable valid and reliable outcome measures to determine the impact of caring and carers’ outcomes is a common problem. Aim To identify outcome measures used for informal carers looking after patients with palliative care needs, and to eva...

Recurrence is a difficult stage in the cancer journey as it brings to the fore the life-threatening nature of the illness. This meta-ethnography examines and synthesises the findings of qualitative research regarding patients' experience of cancer recurrence. A systematic search of the qualitative studies published between January 1994 to April 201...

As more patients survive cancer for longer term, the long-term and late effects of treatments become increasingly important issues for cancer survivors and providing information to enable survivors to recognise and manage them becomes an increasingly pressing challenge for health care professionals. The aim of this study was to explore the experien...

Testicular cancer commonly affects men in the prime of their lives. While survival rates are excellent, little previous research has examined men's experiences of adjustment to survivorship. We aimed to explore this issue in younger testicular cancer survivors. In-depth qualitative interviews were conducted with testicular cancer survivors over two...

Experienced continuity is important for good quality primary care but may be challenging to achieve. Little is known about how discontinuities or gaps in care may arise, how they impact on patients' experiences and how best to understand them so that they can be avoided or managed. Using the theoretical framework of candidacy, we aim to explore pat...

Primary care service providers do not always respond to the needs of diverse groups of patients, and so certain patients groups are disadvantaged. General practitioner (GP) practices are increasingly encouraged to be more responsive to patients’ needs in order to address inequalities. Objectives (1) Explore the meaning of responsiveness in primary...

Title: Younger Adults’ Experiences of Adjustment to Testicular Cancer during early Survivorship: A Grounded Theory Study Background: Testicular Cancer (TC) commonly affects men in the prime of their lives. Although survival rates are high, very little previous research has examined men’s experiences of adjustment and recovery during early survivors...

For women at low risk of childbirth complications, water immersion during labour is a care option in many high income countries. Our aims were (a) to describe maternal characteristics, intrapartum events, interventions, maternal and neonatal outcomes for all women who used a birthing pool during labour who either had a waterbirth or left the pool a...

Background: Testicular Cancer (TC) predominately affects younger men in the prime of their lives. Fortunately, it is the most curable cancer in the UK, with survival rates reaching 96%. Yet little is known about men’s experiences of adjustment and recovery during early survivorship. This study aimed to explore younger men’s evolving experiences of...

Aims: As cancer survival rates continue to increase, it is important to maximise the quality of life of cancer survivors. Pelvic radiotherapy is a common cancer treatment. Bladder, bowel and sexual dysfunction are recognised side-effects of treatment, and yet relatively little is known of the extent to which they remain problems in the longer term...

A cancer diagnosis can have a profound impact on partners and close family members of patients. Little is currently known about the long-term impact. The objective of this study is to describe health status, levels of anxiety and depression, unmet supportive care needs and positive outcomes in the partners/family members of breast, prostate and col...

Birthing pools are integrated into maternity care in the United Kingdom and are a popular care option for women in midwifery-led units and at home. The objective of this study was to describe and compare maternal characteristics, intrapartum events, interventions, and maternal and neonatal outcomes by planned place of birth for women who used a bir...

The partners of cancer survivors may experience distress, anxiety, fear and uncertainty whilst also caring for and supporting a partner who is ill. As they concentrate on the cancer survivor's needs, their own needs may remain unaddressed. Primary care staff may be well placed to support partners as they are generally accessible and may have a bett...

Introduction and aimsThe role of primary care in the provision of cancer care is poorly defined. Practices in are offered a financial incentive to conduct a review with new patients within 6 months of diagnosis, but the extent to which these reviews occur and their scope and perceived usefulness is unknown. The purpose of this study was to explore...

Introduction and aimsThere are an estimated 2 million cancer survivors in the UK today, with earlier diagnosis and improved treatments leading to an increasing number of long-term survivors. Partners and/or close family members are often a key source of support to the patient, and yet they themselves may experience significant levels of distress an...

The Quality and Outcomes Framework (QOF) provides an incentive for practices to establish a cancer register and conduct a review with cancer patients within 6 months of diagnosis, but implementation is unknown. To describe: (1) implementation of the QOF cancer care review; (2) patients' experiences of primary care over the first 3 years following a...

Aims This systematic literature review aims to identify factors that affect 16 – 29 year olds participating in cancer clinical trials. Methods A comprehensive search was conducted using MeSH and synonymous terms for cancer, clinical trials, adolescents, young adults, and participation, in MedLine, Cochrane Library, CRD, CINAHL, PsycInfo, ASSIA from...

This review examined the extent to which the information needs of partners and family members of cancer patients has been addressed in the literature. We conducted a systematic search of four databases for papers published between 1998 and 2008 which assessed the information needs of partners and/or family members of adult cancer patients. Thirty-t...

Recent studies of gay male sexual behaviour have employed a concept new to the literature in the area. Men who appeared to have adopted safer sex behaviours and are now having ‘unsafe’ sex in relation to possible infection with HIV are described as having ‘relapsed’. In this paper we critically evaluate this concept. Firstly we undertake a methodol...

Abstract After assessing the evidence on social class differences in the rates and nature of general practice consultations, the Black Report proposed that middle-class patients receive a better service from GPs than do their working-class contemporaries. This paper reviews the literature on which this suggestion is based and presents further evide...

Informed consent is a concept which attempts to capture and convey what is regarded as the appropriate relationship between researcher and research participant. Definitions have traditionally emphasised respect for autonomy and the right to self-determination of the individual. However, the meaning of informed consent and the values on which it is...

It is increasingly argued that qualitative approaches have an important role in health care research. A wide range of methods are used to collect qualitative data, including in-depth interviews, focus groups and observational methods such as participant observation. The reliability and validity of qualitative studies can be addressed by a variety o...

A hand search of the original papers in seven medical journals over 5 years was conducted in order to identify those reporting qualitative research. A total of 210 papers were initially identified, of which 70 used qualitative methods of both data collection and analysis. These papers were evaluated by the researchers using a checklist which specif...

To estimate the relative importance to patients of continuity of care compared with other aspects of a primary care consultation. We carried out a discrete choice experiment in Leicestershire and London on a stratified random sample of 646 community dwelling adults taken from general practitioner (GP) registers, plus 20 interviews with Punjabi, Urd...

This qualitative cross-sectional survey, undertaken in the antenatal booking clinics of a hospital in central London, explores pregnant women's responses to routine HIV testing, examines their reasons for declining or accepting the test, and assesses how far their responses fulfil standard criteria for informed consent. Of the 32 women interviewed,...

Developments in primary care may make the provision of interpersonal continuity more difficult. To identify those patients who regard interpersonal continuity as important and determine what makes it difficult for them to obtain this. Design of study: Cross sectional survey. Twenty-two practices and a walk-in centre in West London and Leicestershir...

In the context of developments in healthcare services that emphasise swift access to care, concern has been expressed about whether and how continuity of care, particularly interpersonal continuity, will continue to be achieved. To explore how patients regard and use primary care services in relation to continuity of provider and access to care, to...

The aims of the study were to describe the functional ability, health status, and health-related quality of life (HRQL) of young children with a vision impairment or blindness (VI/BL) and to examine the effect of different types of ophthalmic condition and the presence of other impairments or systemic disorders. A cross-sectional community survey o...

The aims of the study were to describe the functional ability, health status, and health-related quality of life (HRQL) of young children with a vision impairment or blindness (VI/BL) and to examine the effect of different types of ophthalmic condition and the presence of other impairments or systemic disorders. A cross-sectional community survey o...

To examine the basic surgical training received by Senior House Officers (SHOs) in ophthalmology and the influence on training of sociodemographic and organisational factors. Cross-sectional survey of SHOs in recognised UK surgical training posts asking about laboratory training and facilities, surgical experience, demographic details, with the opp...

A study was undertaken with the purpose of exploring the day-to-day experiences of families bringing up young children with vision impairments and their experience of services intended to support them. Methods consisted of a self-completed questionnaire and in-depth interview. The research was undertaken in four areas of England: two cities with la...

We respond to Richard Smith's observations (June 2004 JRSM) in relation to our study1 of surgical training amongst ophthalmic senior house officers (SHOs). At the outset, we too expected SHOs in district general hospitals (DGHs) to gain more surgical experience than those in teaching hospitals but found that the proportion of year 3 and 4 SHOs that...

We report an analysis of the qualitative phase of a study of patients' and carers' views of primary care services, focusing on their experiences of access to face-to-face general practitioner (GP) consultations during the period when new access policies were being implemented. Practices interpreted the new policy in various ways; restricted interpr...

Concern is being expressed about the state of basic surgical training in the context of growing demands to improve service provision in the National Health Service. Taking ophthalmology as a case example, we sent questionnaires to all 466 senior house officers (SHOs) in recognized surgical training posts in England, Wales, Scotland and Northern Ire...

The study's aim was to ascertain whether living alone is associated with the use of an independent cancer information service. An Enquirer Record Form is completed for every fifth enquirer to the service; two questions asking whether enquirers, patients, relatives/friends were living alone or with others where asked in association with the routine...

To explore patients' perceptions of the features of personal care and how far these are shared by healthcare providers; whether a continuing relationship between a health professional and a patient is essential for personal care; and the circumstances in which a continuing relationship is important. Qualitative analysis of semistructured interviews...

Background: Recent research has shown that patients' expectations for prescriptions influence doctors' prescribing decisions, but little is known of the antecedents of these expectations. Objectives: To test earlier qualitative research about patients' views of medicines; to describe the demographic characteristics of those holding orthodox and...

There is an increasing amount of evidence to suggest that the clinical outcomes associated with a home birth for low risk women are at least as good, if not better than, the clinical outcomes associated with giving birth in hospital. If it is the case that there is little or no difference in clinical outcomes between the two modes of delivery, then...

Male cancer patients' use of a national cancer information service, their requests and key predictors of these over the period April 1996 to March 1998 are presented, in comparison with women. The most frequent requests of 411 prostate, 162 male and 217 female colorectal cancer patients were similar: site-specific information, emotional support, pu...

This paper describes clients' accounts of the benefits they derived from a short course of cancer counselling provided within a humanist framework. Three hundred and two clients who had attended at least one session of a short course of cancer counselling received an evaluation form, which incorporated both fixed-choice and open-ended questions. On...

The CancerBACUP London Counselling Service offered short-term face-to-face counselling to self-referred cancer patients and their relatives and friends, provided by experienced supervised counsellors working within a humanistic theoretical framework. This study aimed to identify its clients' characteristics, use of the service, extent of perceived...

OBJECTIVE: To explore why cancer patients do not want or seek information about their condition beyond that volunteered by their physicians at times during their illness. DESIGN: Qualitative study based on in-depth interviews. SETTING: Outpatient oncology clinics at a London cancer center. PARTICIPANTS: 17 patients with cancer diagnosed in previous...

To explore why cancer patients do not want or seek information about their condition beyond that volunteered by their physicians at times during their illness. Qualitative study based on in-depth interviews. Outpatient oncology clinics at a London cancer centre. 17 patients with cancer diagnosed in previous 6 months. Analysis of patients' narrative...

Objective: To describe the use of hospital and community services for children infected with HIV and estimate the cost per patient-year by stage of HIV infection during the era of antiretroviral monotherapy. Design: Data on the use of hospital services were collected from case notes; the use of statutory and nonstatutory community services was r...

This paper describes clients' accounts of the benefits they derived from a short course of cancer counselling provided within a humanist framework. Three hundred and two clients who had attended at least one session of a short course of cancer counselling received an evaluation form, which incorporated both fixed-choice and open-ended questions. On...

The objective of this study was to compare differences in cost estimates for paediatric HIV hospital service provision based on hospital prices with cost estimates obtained through a research-based service-specific costing exercise. Activity data on the use of hospital services of children by stage of HIV infection were collected from case-notes fo...

To describe the use of primary care services by children infected with HIV and to explore the attitudes of their parents to the role of general practitioners in their children's care. A 6 month prospective study. Quantitative analysis of "contact diaries" kept by parents; qualitative analysis of face to face interviews with parents. Parents of chil...

A retrospective comparison of cancer incidence data and, where relevant, population data with 16,955 first-time users (patients, relatives and friends) of a national cancer information service (CancerBACUP) during the period April 1995 to March 1996 is presented. The number of events observed was compared with the number of events expected, were th...

A hand search of the original papers in seven medical journals over 5 years was conducted in order to identify those reporting qualitative research. A total of 210 papers were initially identified, of which 70 used qualitative methods of both data collection and analysis. These papers were evaluated by the researchers using a checklist which specif...

It is increasingly argued that qualitative approaches have an important role in health care research. A wide range of methods are used to collect qualitative data, including in-depth interviews, focus groups and observational methods such as participant observation. The reliability and validity of qualitative studies can be addressed by a variety o...

Recent developments in molecular genetics have made it possible to identify carriers of the cystic fibrosis (CF) mutation, regardless of family history, before they have an affected child. Using these techniques, population or 'community' carrier screening can offer informed reproductive choice to individuals and couples who would not otherwise kno...

Carrier screening programmes for cystic fibrosis have found that many of those identified as carriers are initially anxious about their result, although this generally declines after genetic counselling. This paper describes a project to try to reduce initial anxiety and the need for extensive post-test counselling through the production of a video...

As one of the first genetic conditions for which community carrier screening is possible, cystic fibrosis provides an opportunity to examine the way in which health professionals understand and assess issues associated with the clinical applications of the `new genetics'. This paper presents the results of a postal survey of general practitioners i...

This paper provides a qualitative analysis of the explanations given by a sample of 78 gay men in England of the most recent occasion on which they engaged in anal intercourse without a condom. Explanations are analysed and interpreted from the sociological perspective of 'accounts': that is, they are not viewed as exact descriptions of the 'real'...

To evaluate the extent to which 'high-risk' sexual behaviour is influenced by awareness of partners' HIV status among gay men. Structured interviews and collection of saliva samples for anonymous linked testing for HIV-1 antibodies. Genitourinary medicine clinics and the gay community. Men (n = 677) who reported sexual contact with another man in t...

Objective: To evaluate the extent to which 'high-risk' sexual behaviour is influenced by awareness of partners' HIV status among gay men. Design: Structured interviews and collection of saliva samples for anonymous linked testing for HIV-1 antibodies. Setting: Genitourinary medicine clinics and the gay community. Subjects: Men (n = 677) who reporte...

Primary care has an important role to play in the prevention and management of the human immunodeficiency virus (HIV). It has been suggested that homosexual men experience a variety of problems in relation to primary care. As part of a larger study, it was decided to examine the extent to which a sample of homosexually active men experienced diffic...

Studies in both the UK and the USA continue to show that gay and bisexual men put themselves at risk of exposure to HIV through unprotected intercourse, most often with regular partners. As part of a larger study of homosexually active men, 310 men who had had unprotected anal intercourse with a man in the previous year were asked to describe the l...

To describe the sexual risk behaviour of and HIV and hepatitis B antibody prevalence in gay men in England. Cross-sectional. Gay men recruited from community settings (bars, clubs, gay organizations) and genito-urinary clinics in London, Manchester, the Midlands and Bristol; men who participated in an earlier study. Interview including demographic...

We report on homosexual men's uptake of voluntary HIV testing. A sample of 677 men was recruited from four different areas of England, which included 30% obtained via clinics. The criterion for inclusion was ‘any man who had had sex with another man in the previous 5 years’. Men were interviewed about their sexual behaviour, history of sexua...

Relatively little is known about the behaviour of bisexual men which may help in assessing their role in HIV transmission. A sample of 60 behaviourally bisexual men were asked about their sexual behaviour with male and female partners and their perceptions of risk of HIV infection. Only a minority of men engaged in unprotected anal sex with their m...

Evidence of high risk sex between gay men continues to be reported, as does a range of sexual behaviour. Three hundred and sixty-nine homosexually active men from different areas of England were each assessed twice at an an interval of 9 months in order to examine the extent to which a number of social-psychological factors predicted subsequent hig...

THERE is still considerable variation in gay sexual behaviour and evidence of continued high risk sex. A sample of 369 homosexually active men from differ ent areas of England were assessed on two oc casions, nine months apart, in 1988 and 1989, to examine the extent to which a number of social- psychological factors predicted high risk sexual be h...

This paper aims to assess the effects of voluntary anti-HIV testing on homosexual sexual behaviour. A sample of 502 men were recruited from four different areas of England. The criterion for inclusion was 'any man who had had sex with another man in the previous 5 years'. Men were interviewed about their recent sexual behaviour, histories of sexual...