Professor Mary Boulton

Introduction: Exercise is a widely used treatment modality for older people with musculoskeletal conditions. The effectiveness of exercise programmes is limited by adherence. The aims of this study were to examine the acceptability and feasibility of the AERO intervention in facilitating exercise adherence in older people with musculoskeletal conditions, and to inform the design of a future randomised controlled trial.

Methods: A two arm feasibility randomised controlled trial with an embedded qualitative study conducted at one orthopaedic hospital in the South of England. Older adults referred to physiotherapy with musculoskeletal conditions were randomised to receive either usual care consisting of standard physiotherapy only, or the AERO intervention, consisting of usual care with the addition of tailored exercise adherence approaches based on a brief behavioural assessment. Feasibility outcomes included recruitment, randomisation, retention, acceptability, and fidelity to trial protocol. Secondary outcomes included exercise adherence, physical activity, and behavioural regulation.

Results: 48 participants were recruited to the study with 27 randomised to usual care and 21 to AERO and usual care. On the basis of recruitment, retention, the acceptability to participants and physiotherapists and fidelity, the AERO intervention was determined to be feasible.

Conclusion: The AERO intervention in which participants received tailored adherence strategies based on a behavioural assessment plus standard physiotherapy is feasible and acceptable. It is now ready to be tested in an adequately powered randomised controlled trial.

Contribution of the paper: CLINICAL TRIAL REGISTRATION NUMBER: This study was registered at clinicaltrials.gov REF: NCT03643432.

Keywords: Exercise adherence; Musculoskeletal conditions; Older adults.

Purpose: The purpose of this study was to determine if seeing a physiotherapist affects self-rated confidence, capacity and motivation to exercise.

Methods: The sample consisted of participants from the intervention arm of the AERO feasibility study, which tested an individually tailored exercise adherence intervention for older people with musculoskeletal problems.

Participants were asked three questions prior to starting their first physiotherapy session.
•
Do you feel you have the necessary capacity (e.g. strength, flexibility, fitness, etc.) to undertake an exercise programme? Score on a scale 0–10 where 0 is ‘I definitely don’t have capacity’, to 10: ‘I definitely do have the capacity’

•
How confident do you feel that you can undertake an exercise programme? (i.e. Do you feel you have the time, any equipment that you might need etc.) Score on a scale of 0–10, where 0 is ‘not confident at all’, and 10 is ‘totally confident’

•
How motivated do you feel to undertake your exercise programme on a scale of 0–10? Where 0 is ‘completely unmotivated’ and 10 is ‘completely motivated’

Participants were then assessed and treated by a physiotherapist. After seeing the physiotherapist, the same questions were asked. The time frame between completing the questions for the first and second time was roughly 2 h.

Mean scores and standard deviation for the two timepoints were calculated. Group differences were compared using Wilcoxon signed rank test and effect sizes were calculated with Cohen's D. All data were analysed using SPSS.

Results: 21 participants were recruited to the intervention arm of the AERO feasibility RCT, with a mean age of 74.1 years (SD 6.2 years), 8 of the participants were male and 13 female. Self-reported confidence, capacity and motivation to exercise increased after seeing a physiotherapist –
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self-rated confidence = pre-physio mean 6.63 (SD 2.59), post-physio mean 9.26 (SD 0.99) Z = −3.304, P = 0.001, d = 1.34

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Capability pre-physio mean 6.84 (SD 2.50), post-physio mean 8.21 (SD 2.50) Z = −2.684, P = 0.007, d = 0.53

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Motivation pre-physio mean 7.47 (SD 2.41) post physio mean 9.16 (SD 1.07) Z = −2.680, P = 0.007, d = 0.90

Conclusion(s): This study found that participants self-reported confidence, capability and motivation to exercise increased following an appointment with a physiotherapist. This is important given the challenge of adherence to exercise reported in the previous literature. If interaction with a physiotherapist has the ability to improve behavioural regulation related to exercise, it should continue to be seen as important, particularly as services emerge from COVID-19 restrictions. The results of this study need to be understood in the context of a small sample size that was recruited for a feasibility trial. However, the difference in group means and effect sizes indicate that this is an area that warrants further investigation. Future research should consider testing for this effect in an appropriately large sample size.

Impact: The importance of seeing a physiotherapist to improve behavioural regulation in regard to exercise is underlined.

Further research needs to confirm these findings in a large sample and across different populations.

Funding acknowledgements: This work was funded by the Physiotherapy Research Unit, Nuffield Orthopaedic Centre, Oxford, UK and The Centre for Movement, Occupational and Rehabilitation Sciences (MOReS), Oxford Brookes University, Oxford, UK.

Purpose: To explore participants experiences of trying to adhere to exercise programmes prescribed for musculoskeletal conditions

Methods: This qualitative study was set within an interpretive paradigm. Participants who had taken part in the Adherence for Exercise Rehabilitation (AERO) study, a feasibility randomised controlled trial testing tailored exercise adherence strategies for older patients with musculoskeletal conditions, were invited to take part in a semi-structured interview. Participants were asked if they were interested, and if so, a study invite and participant information sheet was sent out. If still interested participants were scheduled to undertake an interview at a time and location that was convenient for them. All participants gave written informed consent prior to their interview.

All interviews were conducted using a topic guide by JR, a male physiotherapy researcher and PhD student, and all participants were aware of this. The interviews were recorded and transcribed verbatim. The data were analysed using thematic analysis. All transcripts were coded by JR, with three transcripts coded separately by FT, and meetings were held to discuss agreements and disagreements in coding, a third researcher, KB was available to resolve disputes if needed. Subthemes and themes were initially generated by JR and then refined in meetings with FT.

Results: Ten participants took part with an average age of 76 years (SD 8.51, range 66–91), five participants had been in the control group of the AERO study and five in the intervention group.

Five themes were generated from the data, 1) It's not easy, 2) Facets of the physio, 3) Facets of the person, 4) Physiotherapist patient relationship, 5) This really helped.

Conclusion(s): In the themes outlined above participants discussed their experience of trying to adhere to their exercise programmes. The first theme describes the challenge of sticking to an exercise programme, with specific factors making it difficult such as exercises being boring, pain, or not noticing any improvement. In the second theme, participants outlined the importance of who their physiotherapist was, how they made them feel, and how they communicated. Participants valued a supportive approach from someone who wanted them to succeed. Theme three describes the need to consider the individual, it was felt that everyone is different and may need different approaches with regard to sticking to an exercise programme. In the fourth theme, the relationship between physiotherapists and patients was described as crucial, the need to work together was highlighted, in order that patients can be both heard and encouraged, and physiotherapists can acknowledge the current situation but also offer hope for the future. The final theme described things that participants found useful, namely monitoring and feedback, noticing a difference and moving towards goals, exercise programmes that fitted their life, and being able to understand why they were being asked to undertake their exercise programme.

Impact: Physiotherapists may want to consider taking time to build rapport and strong therapeutic relationships, in addition to considering specific steps that may be helpful for the individual patient, in order to facilitate better adherence to exercise in older people with musculoskeletal conditions.

Objectives: The aim of this study was to explore physiotherapists' perceptions of how patients' adherence and non-adherence to recommended exercise affects their practice.

Design: A qualitative study with a focus group and semi-structured interviews. The focus group and interviews were audio recorded and transcribed verbatim. Transcripts were analysed using thematic analysis.

Setting: MSK physiotherapy services in the United Kingdom.

Participants: Focus group: 8 UK registered physiotherapists (age range=24-48; seven female, one male). Semi-structured interviews: 10 UK registered physiotherapists (age range=28-52; eight female, two male).

Results: Participants described how exercise adherence could be a challenging aspect of clinical practice and how they tried to improve it. Four main themes were identified: 1) A challenge but worth it; 2) It's frustrating but you can't win them all; 3) Striving to see the individual; and 4) Striving to help the patient. The importance of establishing a good working relationship with patients was emphasised. This included working collaboratively with the patient, avoiding blaming them for non-adherence and thinking about the language they used in discussing exercises.

Conclusion: Patient non-adherence to recommended exercise is a challenging aspect of clinical practice. Physiotherapists can acknowledge this difficulty, and the frustrations it may potentially bring, yet remain resilient in the face of it. Clinicians should consider potential approaches and strategies to optimise the potential for behaviour change, and to improve exercise adherence. Robust interventions to help clinicians facilitate better exercise adherence are also needed.

Keywords: Adherence; Exercise; Physiotherapy; Qualitative.

Purpose. To develop an in-depth understanding of how survivors of acquired brain injury (ABI) experience fatigue and how fatigue affects everyday life.
Materials and methods. We conducted semi-structured in-depth interviews with 16 adults with ABI fatigue, recruited from support groups in south east UK. Interviews were analysed using the frameworks method. 
Results. We developed four themes: experiencing fatigue in the context of everyday activities, struggling to make sense of fatigue, coping with fatigue, adjusting social participation in the context of fatigue. Fatigue was comprised of mental, physical, generalised and motivational fatigue. Balancing fatigue against participation in daily activities was influenced by coping strategies and social support. Opportunities to socialize or participate in meaningful activities provided incentives for participants to push through their fatigue.
Conclusions. This study highlights complex interactions that potentially mitigate the impact of fatigue on everyday life.  Educational and self-management approaches to fatigue need to account for different types of fatigue in the contexts of an individual’s daily activity. Assessment of fatigue should capture in- the- moment experiences of different types of fatigue and activity. Social support and participation in meaningful activities may help individuals to break the negative cycle of fatigue and inactivity. 

Purpose. To describe physical activity (PA) levels and motivators and barriers to PA among haemodialysis patients and to identify an appropriate approach to increasing their PA. 
Methods. A cross sectional mixed methods study conducted in a tertiary and satellite haemodialysis unit. 101 participants aged 18 years and over, receiving regular haemodialysis for at least four months, were recruited. Patients with recent hospital admission or acute cardiac event were excluded. Participants completed health status (EQ-5D-3L™) and activity (Human Activity Profile) questionnaires. A subgroup were invited to wear accelerometers and wearable cameras to measure PA levels and capture PA episodes, to inform subsequent semi-structured interviews on motivators and barriers. Semi-structured interviews were analysed using the Framework Method informed by constructs of the Health Belief Model. 
Results. 98/101 completed the study (66 male, 32 female). For 68/98 participants, adjusted activity scores from the Human Activity Profile indicated ‘impaired’ levels of Physical Activity; for 67/98 participants, the EQ-5D-3L indicated problems with mobility.  Semi-structured interviews identified general (fear of falls, pain) and disease specific barriers (fatigue) to PA. Motivators included tailored exercise programmes and educational support from health care professionals.
Conclusions. Participants indicated a need for co-development with healthcare professionals of differentiated, targeted exercise interventions. 

Aims: To explore the experience of fatigue and living with fatigue in persons with advanced heart failure.

Design: Single-setting, qualitative interview study.

Methods: In-depth in-person interviews were conducted with participants from November 2012 to June 2013. Participant responses to open-ended questions were analysed using thematic content analysis.

Inclusion criteria were: 18 years and older, diagnosis of New York Heart Association class III-IV heart failure with reduced ejection fraction by a consultant cardiologist, and able to participate in conversational-style interviews in their own language.  Major exclusion criteria was cognitive deficit identified by Abbreviated Mental Test Score. Twenty-three adults participated in the study.

Results: Participants (age 72.5 ± 9.5 years, 10/23 female, 17/23 New York Heart Association class III, and 6/23 class IV) identified experiencing fatigue almost daily with over 14/23 reporting it as their worst symptom or combined worst symptom with breathlessness. 9/23 identified fatigue as their second-worst symptom. Three key themes were identified: fatigue as a physical barrier, psychological response to fatigue, and living with fatigue as a part of daily life.  The three themes however combine to influence a patients well-being and we suggest need to be acknowledged when planning self-care management.

Conclusion: As heart failure progresses fatigue influences patients’ daily life and may negatively affect self-care abilities however patients strive to adapt to these limitations. Understanding the patient experience of fatigue and living with fatigue is important to optimize health management strategies.

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 up to 50% discontinuing by 5 years. Interventions are needed to support women taking AET after breast cancer. The aim of this study was to develop and pilot test an e-health app for this population. Methods. Two focus groups (n=15) and five interviews were conducted with women following treatment for early-stage breast cancer to assess the likely acceptability of an e-health app and to inform the content (Phase I). Following development of a prototype e-health app, a simple heuristic usability test was completed by five women in order to identify any design usability problems (Phase II). A further 18 women used the app for 1 month between July and August 2016, after which they were interviewed by telephone to collect their experiences and views of the app (Phase III). Results. The prototype e-health app included evidence-based information on effectiveness of AET, an electronic side-effects diary, a peer support forum, a repeat prescription reminder, suggested strategies for facilitating adherence and managing any side effects that occur, and a link to further evidence and useful organizations for further information and support. The app was received positively by women. Women found the app useful as it emphasized the importance of taking AET, helped them manage their side effects and provided details of support organizations, while offering empathy and exchange of suggestions for self-management strategies through the peer support forum. Conclusion. Overall, findings suggest that this novel e-health app has potential as a feasible medium for promoting adherence to AET. Future research should evaluate the efficacy of the app in supporting women and promoting adherence.

Aim: To provide a better understanding of the factors affecting recruitment and retention of clinical research nurses.

Design: Qualitative exploratory design

Methods: An on-line questionnaire comprising open-ended and fixed choice questions was completed by 121 clinical research nurses. Seven focus groups were held across three counties with a subgroup of 26 participants. Data were analysed using inductive thematic analysis.

Results: Participants were attracted to a research nurse post by an interest in research itself, a desire for a change or to achieve personal objectives. The majority expected to continue in a research nurse post for the next five years while others expected to move on to research management, a clinical post or retirement; few had ambitions to become an independent researcher. Factors identified in focus groups as leading to intentions to leave research included short term contracts, concern about loss of clinical skills, desire for further change, unsupportive employers and limited opportunities for career progression.

interventions to support women and promote adherence. A questionnaire survey to measure

level of adherence, side effects experienced, beliefs about medicine, support received and socio-demographic details was sent to 292 women 2-4 years post breast cancer diagnosis. Differences between non-adherers and adherers to AET were explored, and factors associated with intentional and unintentional non-adherence are reported. Approximately one quarter of respondents, 46 (22%), were non-adherers, comprising 29 (14%) intentional non-adherers and 17 (8%) unintentional non-adherers. Factors significantly associated with intentional non-adherence were: the presence of side effects (p<0.03), greater concerns about AET (p<0.001), and a lower perceived necessity to take AET (p<0.001). Half of the sample (105/211) reported that side effects had a moderate or high impact on their quality of life. Factors associated with unintentional non-adherence were: younger age (<65), (p<0.001), post-secondary education (p=0.046), and paid employment (p=0.031). There are distinct differences between intentional non-adherence and unintentional non-adherence. Differentiation between the two types of non-adherence may help tailor support and advice interventions. 

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 understanding of the workforce that delivers translational and applied health research by exploring who delivers studies, what types of studies are delivered and what delivering them entails and whether this varies across employment contexts.

Methods

A link to an on-line questionnaire was sent to 280 non-medical researchers in England funded by the National Institute for Health Research to deliver translational and applied health research; 168 (60%) responded. Responses were analysed quantitatively.

Findings

Participants were from 11 occupational groups, with nurses (77%) the most common. Most (82%) had worked on clinical trials and almost as many (73%) on observational studies. A fifth had conducted studies outside hospital settings. Participants recruited from Community sites more often reported taking a medical history (p = 0.022) and carrying out initial assessments (p = 0.028) and less often reported managing other staff (p = 0.036). Those recruited through the University Hospital more often reported contributing to development of new studies (p = 0.000); to research governance (p = 0.001) and protocols (p = 0.000); and to writing publications (p = 0.005).

Discussion

There is greater diversity in the workforce than previously identified, more variation in types of studies delivered and a wider range of settings. Responsibilities vary across employment contexts.

Conclusions

This diversity needs to be acknowledged in educational, training and career planning to sustain capacity for delivering translational and applied health research in the future.

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 centres in England.

Participants: 10 Hodgkin lymphoma survivors (4 men and 6 women, 21-39 years old) recruited as part of a larger study of 28 young adult cancer survivors.

Methodologic approach: Semi-structured interviews conducted approximately two months following treatment completion and follow-up interviews conducted 7 months later.  Our grounded theory of positive psychosocial adjustment to cancer (Matheson et al., 2016)provided the conceptual framework.

Findings:  Positive reframing, informal peer support, acceptance and normalisation helped young adults dismantle the threats of Hodgkin lymphoma over the course of treatment but they described losing a sense of security following treatment completion. Greater age-specific information to enable better preparation for the future was desired regarding body image, fertility, sexual relationships, work and socialising.

Conclusions: Informal support mechanisms such as peer support and patient navigator interventions might be useful ways to further support young adults around treatment completion.

Interpretation for practice: Positive psychosocial adjustment to cancer survivorship in young adults is facilitated by having informal peer support, being able to positively reframe, accept and normalize their experience and being prepared for the future.

Aim: To identify outcome measures used for informal carers looking after patients with palliative care needs, and to evaluate the measures’ psychometric properties.
 

Design: A systematic review was conducted. The studies identified were evaluated by independent reviewers (C.T.J.M., M.B., M.P.). Data regarding study characteristics and psychometric properties of the measures were extracted and evaluated. Good psychometric properties indicate a high-quality measure.
 

Data sources: The search was conducted, unrestricted to publication year, in the following electronic databases: Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, EMBASE, PubMed, PsycINFO, Social Sciences Citation Index and Sociological Abstracts.
 

Results: Our systematic search revealed 4505 potential relevant studies, of which 112 studies met the inclusion criteria using 38 carer measures for informal carers of patients with palliative care needs. Psychometric properties were reported in only 46% (n = 52) of the studies, in relation to 24 measures. Where psychometric data were reported, the focus was mainly on internal consistency (n = 45, 87%), construct validity (n = 27, 52%) and/or reliability (n = 14, 27%). Of these, 24 measures, only four (17%) had been formally validated in informal carers in palliative care.
 

Conclusion: A broad range of outcome measures have been used for informal carers of patients with palliative care needs. Little formal psychometric testing has been undertaken. Furthermore, development and refinement of measures in this field is required.

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.

Methods

A systematic search of the qualitative studies published between January 1994 to April 2014 was undertaken. Seventeen relevant papers were identified, and a meta-ethnography was conducted.

Results

Six third-order concepts were developed to capture patients' experiences: experiencing emotional turmoil following diagnosis, which described the emotional impact of diagnosis and the influence of previous experiences on how the news were received; experiencing otherness, encompassing changed relationships; seeking support in the health care system, describing the extent of information needs and the importance of the relationship with health care professionals; adjusting to a new prognosis and uncertain future, highlighting the changes associated with uncertainty; finding strategies to deal with recurrence, describing ways of maintaining emotional well-being and regaining a sense of control over cancer; and facing mortality, describing the difficulties in facing death-related concerns and associated consequences.

Conclusions

This meta-ethnography clarifies the fundamental aspects of patients' experience of recurrence. It suggests that health care professionals can promote a positive experience of care and help lessen the psychosocial impact of recurrence by providing information in an approachable way and being sensitive to their changing needs. It also points to the importance of supporting patients in adopting strategies to regain a sense of control and to address their potential mortality and its impact on loved ones.

Purpose
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.

Methods
In-depth qualitative interviews were conducted with testicular cancer survivors over     two time points approximately 6 months apart in the year following treatment                completion. Interviews were analysed using a grounded theory approach.

Results
The sample included 18 testicular cancer survivors between 22 and 44 years (mean age 34). A grounded theory was developed, which explained the process of positive adjustment over the first year following the treatment completion in terms of men’s ability    to dismantle the present and future threats of cancer, involving the key transitions of    gaining a sense of perspective and striving to get on with life and restore normality.          These were facilitated by six key processes. The processes that explained a negative adjustment trajectory are also presented.

Conclusions
These findings contribute to the understanding of the psychosocial impact of testicular cancer on younger men’s lives and have implications for the provision of support to      testicular cancer survivors. Further investigation into the feasibility of one-on-one peer     support interventions is warranted, as well as informal support that respects men’s          desire for independence.

Implications for Cancer Survivors
Understanding the processes involved in adjustment highlights ways in which health professionals can offer support to those struggling to adjust through challenging illness   beliefs, encouraging emotional disclosure and facilitating peer mentoring.

As more patients survive cancer for longer, 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 increasingly pressing challenges for health care professionals.  The aim of this study was to explore the experiences of cancer survivors regarding information given on potential long term and late effects of pelvic radiotherapy.  Semi-structured interviews were conducted with 28 cancer survivors who had had radiotherapy to the pelvic area for a range of cancers 1 to 11 years previously. Participants were recruited using maximum variation sampling from a larger questionnaire survey of patients treated at one hospital.  Interviews were recorded, transcribed and analysed using Framework.  Participants recognised the value of information to reassure and to inform action but also its potentially undesirable effects to frighten or raise anxieties about future problems and its inherent limitations in meeting their wider needs.  They identified the timing, amount of information and context in which it was given as of particular importance. Information based on personal experience was also valued.  These findings highlight the importance of appropriate, individualised information during treatment, at hospital discharge and subsequently in primary care.

Background

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. 

Objectives

Using the theoretical framework of candidacy, we aim to explore patients’ experiences of discontinuities in care, and to gain insight into how gaps come to be bridged and why they might remain unresolved. 

Methods

A secondary analysis was undertaken of interview data from a large study into continuity in primary care, involving a diverse sample of 50 patients, recruited from 15 general practices, one walk-in centre, and community settings in Leicestershire, UK. Analysis was conducted using a constant comparative approach. 

Results

Experiences of gaps in care were common, arising from failures in communication and coordination of care. Although some gaps were easily bridged, many patients described ‘falling through gaps’ because of difficulties establishing their candidacy for ongoing care when gaps occurred.  These patients commonly had complex, chronic conditions and multi-morbidity. Bridging gaps required resources; relationship continuity was a valuable resource for preventing and repairing gaps in care.  When gaps were not bridged, distress and dysfunctional use of health services followed.

Conclusion

This study demonstrates that some patients with complex chronic conditions and multi-morbidity may be unable to get the continuity they need, and highlights the potential for relationship continuity to help prevent vulnerable patients falling through gaps in care.

Background

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 and had a landbirth, and for the subgroup of women who had a waterbirth in 19 obstetric units, and (b) to compare maternal characteristics, intrapartum events, interventions, and maternal and neonatal outcomes for women who used a birthing pool with a control group of women who did not use a birthing pool for whom we prospectively collected data in a single centre.

Methods

Prospective observational study in 19 Italian obstetric units 2002-2005. Participants were: (a) 2,505 women in labour using a birthing pool in 19 obstetric units; and (b) 114 women in labour using a birthing pool and 459 women who did not use a birthing pool in one obstetric unit. Descriptive statistics were calculated for the sample as a whole and, separately, for those women who gave birth in water. Categorical data were compared using Chi square statistics and continuous data by T-tests.

Results

Overall, 95.6% of women using a birthing pool had a spontaneous vertex delivery, 63.9% of which occurred in water. Half of nulliparas and three quarters of multiparas delivered in water. Adverse maternal and neonatal outcomes were rare. There were two cases of umbilical cord snap with waterbirth. Compared with controls, significantly more women who used a birthing pool adopted an upright birth position, had hands off delivery technique, and a physiological third stage. Significantly fewer nulliparas had an episiotomy, and more had a second degree perineal tear, with no evidence of a difference for extensive perineal tears.

Conclusions

Birthing pool use was associated with spontaneous vaginal birth. The increase in second degree tears was balanced by fewer episiotomies. Undue umbilical cord traction should be avoided during waterbirth.

Background

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 care. (2) Develop a patient-report questionnaire for use as a measure of patient experience of responsiveness by a range of primary care organisations (PCOs). (3) Investigate methods of population mapping available to GP practices.

Design setting

PCOs, including GP practices, walk-in centres and community pharmacies.

Participants

Patients and staff from 12 PCOs in the East Midlands in the development stage, and 15 PCOs across three different regions of England in stage 3.

Interventions

To investigate what responsiveness means, we conducted a literature review and interviews with patients and staff in 12 PCOs. We developed, tested and piloted the use of a questionnaire. We explored approaches for GP practices to understand the diversity of their populations.

Main outcome measures

(1) Definition of primary care responsiveness. (2) Three patient-report questionnaires to provide an assessment of patient experience of GP, pharmacy and walk-in centre responsiveness. (3) Insight into challenges in collecting diversity data in primary care.

Results

The literature covers three overlapping themes of service quality, inequalities and patient involvement. We suggest that responsiveness is achieved through alignment between service delivery and patient needs, involving strategies to improve responsive service delivery, and efforts to manage patient expectations. We identified three components of responsive service delivery: proactive population orientation, reactive population orientation and individual patient orientation. PCOs tend to utilise reactive strategies rather than proactive approaches. Questionnaire development involved efforts to include patients who are ‘seldom heard’. The questionnaire was checked for validity and consistency and is available in three versions (GP, pharmacy, and walk-in centre), and in Easy Read format. We found the questionnaires to be acceptable to patients, and to have content validity. We produced some preliminary evidence of reliability and construct validity. Measuring and improving responsiveness requires PCOs to understand the characteristics of their patient population, but we identified significant barriers and challenges to this.

Conclusions

Responsiveness is a complex concept. It involves alignment between service delivery and the needs of diverse patient groups. Reactive and proactive strategies at individual and population level are required, but PCOs mainly rely on reactive approaches. Being responsive means giving good care equally to all, and some groups may require extra support. What this extra support is will differ in different patient populations, and so knowledge of the practice population is essential. Practices need to be motivated to collect and use diversity data. Future work needed includes further evaluation of the patient-report questionnaires, including Easy Read versions, to provide further evidence of their quality and acceptability; research into how to facilitative the use of patient experience data in primary care; and implementation of strategies to improve responsiveness, and evaluation of effectivenes

Background: A cancer diagnosis can have a profound impact on partners and close familymembers of patients. Little is currently known about the long-term impact.Objectives: 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 ofbreast, prostate and colorectal cancer survivors 5-16 years post-diagnosis.Methods: Patients in a linked study were asked to invite a partner or other close family memberto complete a self-administered postal questionnaire. Data were analysed by cancer site andtime since diagnosis. Matched comparisons were made between cancer patients in the linkedstudy and their partners.Results: An expression of interest was received from 330 partners/family members, and 257questionnaires (77.9%) were returned. Health status and levels of anxiety and depression werecomparable with population norms. Respondents reported an average of 2.7 unmet needs from34 possible options. Hospital parking, information about familial risk, help managing fear ofrecurrence and coordination of care were the most cited unmet needs. There was little variationin health status, psychological morbidity and unmet needs by cancer site or time since diagnosis.Concordance between patients and partners was low for anxiety but higher with respect topositive outcomes and some unmet needs.Conclusions: Most partners/family members of long-term cancer survivors report fewongoing issues. However, a small proportion (

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 when patients are often managed by primary care, nor of the psychological impact of symptoms and effects on quality of life. Therefore, the aims of this study were to estimate the prevalence of bladder, bowel and sexual dysfunction late effects in a sample of cancer survivors; assess the impact of time since treatment on symptom prevalence; and explore the relationship between symptoms, psychological morbidity and quality of life.

Materials and methods

A questionnaire was given to a sample of cancer survivors treated in Oxford who had pelvic radiotherapy 1–11 years previously. The questionnaire measured patient-reported toxicity (Common Toxicity Criteria of Adverse Events/Late Effects of Normal Tissues – Subjective, Objective, Management and Analytic Measure), psychological morbidity (Hospital Anxiety and Depression Scale) and quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30).

Results

In total, 418 (57.1%) completed questionnaires were received. Moderate/severe problems with bowel, urinary and sexual functioning were relatively common: bowel urgency (59% women, 45% men); urine urgency (49% women, 46% men); ability to have a sexual relationship affected (24% women, 53% men). Symptoms were just as frequent in those 6–11 years after treatment as in those 1–5 years after treatment. Symptom severity was significantly associated with poorer overall quality of life and higher levels of depression.

Conclusions

Late effects are common among long-term cancer survivors who have had pelvic radiotherapy, and are associated with reduced quality of life and psychological morbidity. It is imperative due attention is paid to this issue during the follow-up phase – both in secondary and primary care. Health care professionals providing follow-up care need to be aware of the importance of assessing and monitoring symptoms, and need to be adequately informed on the most appropriate management strategies.

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 better knowledge of the patient’s background and family relationships. However, their current involvement in the cancer survivor’s and partner’s cancer-related care is unclear. This study aimed to describe the experience of the partners of cancer survivors in dealing with cancer-related issues in the first 3 years post-diagnosis, their use of primary care services in relation to these issues and the barriers in doing so and their views on the role that primary care could potentially play in supporting them as carers during this period.

Methods

Semi-structured interviews with 22 partners of cancer survivors diagnosed within the last 3 years and recruited through six GP practices in the Thames Valley Region of the UK were analysed using the ‘framework’ approach to thematic analysis.

Results

Three issues were identified as of particular concern to partners: providing practical support, providing emotional support and managing their own health and well-being. Few partners had sought or received support from primary care specifically for cancer-related issues, indicating confidentiality, lack of knowledge of family relationships and the greater need of the cancer survivor as barriers. Most partners would welcome a proactive approach from primary care and felt that this would provide an opportunity to discuss issues they were concerned about.

Conclusions

Needs and concerns of the partners of cancer survivors in caring for patients are often not addressed. There is a scope for primary care to elicit these needs and provide greater support. Changes to clinical practice in primary care could lead to greater involvement of and to better outcomes for cancer survivors and their partners. A proactive approach to patients and their partners or other close family members at the time of diagnosis through an offer of support and the inclusion in a designated review appointment at the end of initial treatment would be useful.

Background: Birthing pools are integrated into maternity care in the UnitedKingdom and are a popular care option for women in midwifery-led units and at home. Theobjective of this study was to describe and compare maternal characteristics, intrapartumevents, interventions, and maternal and neonatal outcomes by planned place of birth forwomen who used a birthing pool. Methods: A total of 8,924 women at low risk of childbirthcomplications were recruited from care settings in England, Scotland, and Northern Ireland.Descriptive analysis was performed. Results: Overall, 7,915 (88.9%) women had aspontaneous birth (5,192, 58.3% water births), of whom 4,953 (55.5%) were nulliparas.Fewer nulliparas whose planned place of birth was the community (freestanding midwiferyunit or home) had labor augmentation by artificial membrane rupture (149, 11.3% [95% CI:9.6-13.1]), compared with an alongside midwifery unit (271, 22.7% [95% CI: 20.3-25.2]),or obstetric unit (639, 26.3% [95% CI: 24.5-28.1]). Results were similar for epiduralanalgesia and episiotomy. More community nulliparas had spontaneous birth (1,172, 88.9%[95% CI: 87.1-90.6]), compared with birth in an alongside midwifery unit (942, 79% [95%CI: 76.6-81.3]) and obstetric unit (1,923, 79.2% [95% CI: 77.5-80.8]); and fewer requiredhospital transfer (265, 20% [95% CI: 17-22.2]) compared with those in an alongsidemidwifery unit (370, 31% [95% CI: 28.3-33.7]). Results for multiparas and newborns weresimilar across care settings. Twenty babies had an umbilical cord snap, 18 (90%) of whichoccurred during water birth. Conclusions: Birthing pool use was associated with a highfrequency of spontaneous birth, particularly among nulliparas. Findings revealed differencesin midwifery practice between obstetric units, alongside midwifery units, and the community,which may affect outcomes, particularly for nulliparas. No evidence was found for adifference across care settings in interventions or outcomes in multiparas or in outcomes fornewborns. During water birth, it is important to prevent undue traction on the cord as thebaby is guided to the surface.

Background The Quality and Outcomes Framework (QOF) providesan incentive for practices to establish a cancer registerand conduct a review with cancer patients within 6 months of diagnosis, but implementation is unknown. Aim To describe: (1) implementation of the QOF cancer care review; (2) patients" experiences of primary care over the first 3 years following a cancer diagnosis; (3) patients" views on optimal care; and (4) the views of primary care professionals regarding their cancer care. Design of study Qualitative study using thematic analysis and a framework approach. Setting Six general practices in the Thames Valley area. Method Semi-structured interviews with cancer patients and focus groups with primary care teams. Results Thirty-eight adults with 12 different cancer types were interviewed. Seventy-one primary care team members took part in focus groups. Most cancer care reviews are conducted opportunistically. Thirty-five patients had had a review; only two could recall this. Patients saw acknowledgement of their diagnosis and provision of general support as important and not always adequately provided. An active approach and specific review appointment would legitimise the raising of concerns. Primary care teams considered cancer care to be part of their role. GPs emphasised the importance of being able to respond to individual patients" needs and closer links with secondary care to facilitate a more involved role. Conclusion Patients and primary care teams believe primary care has an important role to play in cancer care. Cancer care reviews in their current format are not helpful, with considerable scope for improving practice in this area. An invitation to attend a specific appointment at the end of active treatment may aid transition from secondary care and improve satisfaction with follow-up in primary care.

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 based are grounded in society and the practicalities of social relationships. As society changes, so too do the meaning and practice of informed consent. In this paper, we trace the ways in which the meaning and practice of informed consent has changed over the last 35 years with reference to four qualitative studies of parenting and children in the UK which we have undertaken at different points in our research careers. We focus in particular on the shifting boundaries between the professional and personal, and changing expressions of agency and power in a context of heightened perceptions of risk in everyday life. We also discuss developments in information and communication technologies as a factor in changing both the formal requirements for and the situated practicalities of obtaining informed consent. We conclude by considering the implications for informed consent of both increasing bureaucratic regulation and increasingly sophisticated information and communication technologies and suggest strategies for rethinking and managing ‘consent’ in qualitative research practice.

Background

Developments in primary care may make the provision of interpersonal continuity more difficult.

Aim

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.

Setting

Twenty-two practices and a walk-in centre in West London and Leicestershire, UK.

Method

Administration of a questionnaire on preferences for and experiences of interpersonal and informational continuity. Interpersonal continuity was defined in three questions: choosing a particular person; choosing someone known and trusted; and choosing someone who knows the patient and medical condition.

Results

One thousand four hundred and thirty-seven (46.5%) patients responded. Consulting someone known and trusted was important to 766 (62.6%) responders, although 105 (13.7%) of these reported that they had not experienced it at their last consultation. Seven hundred and eighty-eight (65.2%) responders regarded being able to consult a particular person as important, but 168 (21.3%) of these were unable to. Being in work and consulting for a new problem were associated with failing to obtain interpersonal continuity. Ethnic group was associated with failing to see someone with time to listen when this was preferred.

Conclusion

In view of the response rate, which was particularly low among young males, some caution is required in applying the findings. Most patients experience the aspects of care important to them, although interpersonal continuity is important to many and certain groups find difficulty in obtaining it. Practices should have flexible appointment systems to account for the difficulties some patients have in negotiating for the type of care they want.

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, only 10 participants were prepared for HIV testing at their booking interview. None of the women viewed themselves as being particularly at risk for HIV infection. The minority (n = 6) of the participants who declined testing differed from those who accepted, by interpreting test acceptance as risky behaviour, privileging the negative outcomes of HIV positivity and expressing an inability to cope with these, should they occur. Troublingly, only a minority of women (n = 9) had a broad understanding of the rationale for the test, and none fulfilled the standard criteria for informed consent. This study suggests that, although routine screening combined with professional recommendation may be successful in increasing uptake, this may be at the cost of eroding informed consent. Protecting third parties (notably fetuses) from a preventable disease may outweigh the moral duty of respecting autonomy, enshrined in Western bioethical tradition. Nevertheless, such a policy should be made transparent, debated in the public domain and negotiated with women seeking antenatal care.

Background

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.

Aim

To explore how patients regard and use primary care services in relation to continuity of provider and access to care, to identify factors that promote or hinder their success in achieving their preferences, and to describe what this means for how different types of continuity are achieved.

Design of study

Longitudinal, mixed methods.

Setting

Community in London and Leicester

Method

Purposive sample of 31 patients recruited from general practices, walk-in centres and direct advertising. Data collection involved in-depth interviews, consultation record booklets completed over 6 months and general practice records for the year including the study period. Data were analysed qualitatively.

Results

Four patterns were identified in the way patients used primary care. These were shaped by their own preferences, by the organisation and culture of their primary care practices, and by their own and their provider's efforts to achieve their preferences. Different configurations of these factors gave rise to different types of continuity. Patients were not always able to achieve the type they wanted. Patients with apparently similar consulting patterns could experience them differently.

Conclusion

Within a programme of modernisation, policies that promote a commitment to meeting the preferences of different patients with flexibility and understanding are most likely to provide continued support for interpersonal and other types of continuity of care.

Purpose To examine the basic surgical training received by Senior House Officers (SHOs) in ophthalmology and the influence on training of sociodemographic and organisational factors.

Methods Cross-sectional survey of SHOs in recognised UK surgical training posts asking about laboratory training and facilities, surgical experience, demographic details, with the opportunity to add comments.

Results A total of 314/466 (67%) questionnaires were returned. In all, 67% had attended a basic surgical course, 40% had access to wet labs and 39% had spent time in a wet lab in the previous 6 months. The mean number of part phakoemulsification (phako) procedures performed per week was 0.79; the mean number of full phakos performed per week was 0.74. The number of part phakos performed was negatively correlated, and the number of full phakos completed was positively correlated, with length of time as an SHO. Respondents who had larger operating lists performed more full phakos per week (P<0.001). Compared to men, women were less likely to have access to a wet lab (P=0.013), had completed fewer full phakos per week (P=0.003), and were less likely to have completed 50 full phakos (P=0003). SHOs' comments revealed concerns about their limited 'hands on' experience.

Conclusions There are significant shortcomings in the basic surgical training SHOs receive, particularly in relation to wet lab experience and opportunities to perform full intraocular procedures. SHOs themselves perceive their training as inadequate. Women are disadvantaged in both laboratory and patient-based training, but minority ethnic groups and those who qualified overseas are not.

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 questions. A total of 552 callers were asked in a 5-week period, 77% of all callers in these categories. The main findings were: (1) the proportion of enquirers living alone was similar to the general population; (2) among enquirers, patients were more likely to live alone than relatives/friends; (3) requests differed by whether living alone and by type of enquirer, for example, significantly more people living with others requested emotional support than those living alone, and this contrast was most marked for patients than relatives/friends. This study, notwithstanding its limitations, highlights some of the differences in the use of a service and demonstrates the complexity of information and support seeking.

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 met the College requirement to be achieved by the end of year 2 (50 completed phako operations) was 36.8% in DGHs and 46.4% in teaching hospitals. Our cross-sectional survey does not allow us to test his suggestion that SHOs in teaching hospitals perform more phako procedures because they have more surgical experience. However, our data do show that, amongst SHOs in their second year of training, those in a teaching hospital perform more phako procedures per week than those in a DGH. This is most striking when gender is taken into account: the year-2 woman SHO in a DGH fares very badly compared with her male counterpart in a teaching hospital—mean number of phakos performed per week 0.44 and 1.20, respectively. Most year-1 SHOs do work in a DGH (96 of 112 respondents), but we are unable to comment on how they move from the DGH to teaching hospital. Richard Smith's suggestion that teaching hospitals somehow manage to cream off a surgically-elite group of SHOs in the second year is intriguing.

No doubt there are a number of ways of ensuring that a trainee surgeon's surgical experience is protected, and Richard Smith offers one simple method of quantifying this. With the anticipated reduction in time for surgical training this is an important debate,2 and one that is justifiably attracting considerable attention in the medical press.3

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 interpretations, including restriction of access to telephone booking, could cause distress to patients. Patients and carers welcomed flexible interpretations of the policy that offered choice, such as a choice of GP, or of booking in advance.

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 unorthodox views of medicines; to investigate the relationship between patients' ideal and predicted expectations for prescriptions; and to determine the relative effects of attitudinal, demographic, organizational and illness variables on these expectations.

Design  Questionnaire survey of patients consulting general practitioners.

Setting and participants  A total of 544 patients and 15 doctors in four general practices.

Main variables studied  Patients' attitudes to medicines; patients' demographic characteristics; organizational variables; aspects of patients' presenting problems.

Outcome measures  Patients' ideal and predicted expectations for prescriptions.

Results  Orthodox and unorthodox attitudes to medicines can be measured quantitatively, and ethnicity was the only demographic variable associated with both. Ideal and predicted expectations for prescriptions were closely related to each other but differed in their antecedents. Both types of expectations were associated with attitudinal, demographic, organizational and illness variables. Ideal expectations were influenced by orthodox and unorthodox attitudes to medicines, while predicted expectations were only influenced by orthodox attitudes.

Conclusions  Future studies of patients' expectations for health services should distinguish between ideal and predicted expectations, and should consider the range of possible influences on these expectations. In particular, the effect of the organization and context of health services should be investigated.

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 benefits and satisfaction with the service. Socio-demographic data were collected in Data Sheets from all 384 clients who booked an appointment over 18 months; they were predominantly female, < 50 years old and from non-manual social classes. Significantly more people in those classes and in the 30–59 age group attended three or more sessions. Three hundred and nine clients who attended at least once were sent an Evaluation Form; 142 responded. The probability of the Evaluation Forms’ return was greater for those who had completed more sessions; the great majority of respondents felt that they had benefited, and were satisfied with the service. This study, notwithstanding its limitations, shows that a short course of counselling may be perceived by clients to be helpful; it also raises other issues of value to those involved in cancer services and/or counselling provision.

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. One hundred and forty two (47%) clients returned evaluation forms; those who had attended more sessions were significantly more likely to do so. Quantitative data were analysed using SPSS (Statistical Package for the Social Sciences) for Windows and qualitative data using a thematic approach. Almost all clients indicated that they felt they had benefited from counselling. Analysis of the open-ended questions identified nine main benefits of counselling and four key avenues or processes through which clients derived these benefits. Overall, counselling was seen as helping them to work through powerful thoughts and feelings and so to come to terms with cancer and to regain a sense of control in their lives. The benefits of a short course of counselling which clients identified reflect the aims of humanistic counselling which are not well captured by psychiatric assessments or most standard research instruments. In evaluating cancer counselling services, assessments which include these client-defined outcomes may provide a more sensitive way of gauging the value of counselling to a non-clinic population.

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 traditional measures of benefit used in health economics, e.g. quality adjusted life years (QALYs), would detect little or no difference between the alternative modes of delivery. From this, the conclusion would be that the utility values associated with each mode of delivery are similar. However, women may still have clearly defined preferences relating to the way in which maternity care is provided. This paper uses the economic technique of conjoint analysis to assess the relative value attached to several main characteristics associated with the process of maternity care during the intrapartum stage for women who have actively chosen to give birth at home relative to women who have given birth in hospital. It was found that respondents who had chosen a home birth valued continuity of carer, a homely environment and the ability to make their own decisions about what happens during labour and delivery. In contrast, hospital birth respondents placed a relatively high value on access to an epidural for pain relief and not needing to be transferred to another location during labour if a problem arose. The results of the study suggest that women have clearly defined preferences for characteristics associated with the process of intrapartum care that would be unlikely to be detected by traditional benefit measures used in health economics. This finding is important where policy issues relating to aspects of maternity care service delivery are being considered.

Objectives: 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 centre.
Participants: 17 patients with cancer diagnosed in previous 6 months.
Main outcome measures: Analysis of patients' narratives to identify key themes and categories.
Results: While all patients wanted basic information on diagnosis and treatment, not all wanted further information at all stages of their illness. Three overarching attitudes to their management of cancer limited patients' deon with life as normal and could be maintained through silence and avoiding information, especially too detailed or “unsafe” information. Charity to fellow patients, especially those seen as more needy than themselves, was expressed in the recognition that scarce resources—including information and explanations—had to be shared and meant that limited information was accepted as inevitable.
Conclusions: Cancer patients' attitudes to cancer and their strategies for coping with their illness can constrain their wish for information and their efforts to obtain it. In developing recommendations, the government's cancer information strategy should attend to variations in patients' desires for information and the reasons for them.

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 6 months. Main outcome measures Analysis of patients' narratives to identify key themes and categories.

RESULTS:

While all patients wanted basic information on diagnosis and treatment, not all wanted further information at all stages of their illness. Three overarching attitudes to their management of cancer limited patients' desire for and subsequent efforts to obtain further information : faith, hope, and charity. Faith in their doctor's medical expertise precluded the need for patients to seek further information themselves. Hope was essential for patients to carry on with life as normal and could be maintained through silence and avoiding information, especially too detailed or "unsafe" information. Charity to fellow patients, especially those seen as more needy than themselves, was expressed in the recognition that scarce resources-including information and explanations-had to be shared and meant that limited information was accepted as inevitable.

CONCLUSIONS:

Cancer patients' attitudes to cancer and their strategies for coping with their illness can constrain their wish for information and their efforts to obtain it. In developing recommendations, the government's cancer information strategy should attend to variations in patients' desires for information and the reasons for them.