Patient and public priorities for breast cancer research: a qualitative study in the UK.

OBJECTIVE: Internationally recognised specialist breast cancer scientists, clinicians and healthcare professionals have published breast cancer research gaps that are informing research funding priorities in the UK and worldwide. We aimed to determine the breast cancer research priorities of the public to compare with those identified by clinicians and scientists. DESIGN: We conducted a qualitative study and thematic analysis using 'listening events' where patients with breast cancer and public representatives used a patient's breast cancer journey to identify research themes. PARTICIPANTS AND SETTING: Female participants were recruited from attendees at participating hospitals and support groups in the northwest of England, including patients, their family and friends as well as staff at a local retail centre. INTERVENTION: A framework approach was used to analyse transcribed discussions until thematic saturation was reached. MAIN OUTCOME MEASURES: Breast cancer research priorities were identified from participant discussions and compared with the published gaps identified by scientists and healthcare professionals. RESULTS: Thematic saturation was reached after 27 female participants participated in listening events. Our participants consistently focused on improved methods of dissemination of information and improving education on the signs and symptoms of breast cancer. This was not highlighted by scientists or healthcare professionals. There was strong emphasis on quality of life-related issues such as side effects of treatment. There was some agreement between the priorities deduced by our study and those of the professionals in the areas of screening, prevention and breast reconstruction. CONCLUSION: Our study identified some research themes that were not identified by scientists and healthcare professionals in two earlier landmark studies. This highlights the importance of including patients and public representatives when setting research priorities. The results should be used to guide investigators when planning future studies and for funding bodies in allocating resources for future projects.

Moving forward: a qualitative research inquiry to inform the development of a resource pack for women following primary breast cancer treatment.

While the UK charity Breast Cancer Care has extensive resources for women with breast cancer, this research partnership developed the first resource driven and informed by primary research with these women, exploring their needs and developing the resource according to need. Data were collected from focus groups with breast cancer survivors and telephone interviews with health professionals and experts, which explored the needs of women after primary cancer treatment, and were analyzed using thematic analysis. As well as information, these women needed resources to help them regain control over life, adapt to a changed body, and restore lost confidence.

Revising acute care systems and processes to improve breastfeeding and maternal postnatal health: a pre and post intervention study in one English maternity unit.

BACKGROUND: Most women in the UK give birth in a hospital labour ward, following which they are transferred to a postnatal ward and discharged home within 24 to 48 hours of the birth. Despite policy and guideline recommendations to support planned, effective postnatal care, national surveys of women's views of maternity care have consistently found in-patient postnatal care, including support for breastfeeding, is poorly rated. METHODS: Using a Continuous Quality Improvement approach, routine antenatal, intrapartum and postnatal care systems and processes were revised to support implementation of evidence based postnatal practice. To identify if implementation of a multi-faceted QI intervention impacted on outcomes, data on breastfeeding initiation and duration, maternal health and women's views of care, were collected in a pre and post intervention longitudinal survey. Primary outcomes included initiation, overall duration and duration of exclusive breastfeeding. Secondary outcomes included maternal morbidity, experiences and satisfaction with care. As most outcomes of interest were measured on a nominal scale, these were compared pre and post intervention using logistic regression. RESULTS: Data were obtained on 741/1160 (64%) women at 10 days post-birth and 616 (54%) at 3 months post-birth pre-intervention, and 725/1153 (63%) and 575 (50%) respectively post-intervention. Post intervention there were statistically significant differences in the initiation (p = 0.050), duration of any breastfeeding (p = 0.020) and duration of exclusive breastfeeding to 10 days (p = 0.038) and duration of any breastfeeding to three months (p = 0.016). Post intervention, women were less likely to report physical morbidity within the first 10 days of birth, and were more positive about their in-patient care. CONCLUSIONS: It is possible to improve outcomes of routine in-patient care within current resources through continuous quality improvement.

Improving inpatient postnatal services: midwives views and perspectives of engagement in a quality improvement initiative.

BACKGROUND: Despite major policy initiatives in the United Kingdom to enhance women's experiences of maternity care, improving in-patient postnatal care remains a low priority, although it is an aspect of care consistently rated as poor by women. As part of a systems and process approach to improving care at one maternity unit in the South of England, the views and perspectives of midwives responsible for implementing change were sought. METHODS: A Continuous Quality Improvement (CQI) approach was adopted to support a systems and process change to in-patient care and care on transfer home in a large district general hospital with around 6000 births a year. The CQI approach included an initial assessment to identify where revisions to routine systems and processes were required, developing, implementing and evaluating revisions to the content and documentation of care in hospital and on transfer home, and training workshops for midwives and other maternity staff responsible for implementing changes. To assess midwifery views of the quality improvement process and their engagement with this, questionnaires were sent to those who had participated at the outset. RESULTS: Questionnaires were received from 68 (46%) of the estimated 149 midwives eligible to complete the questionnaire. All midwives were aware of the revisions introduced, and two-thirds felt these were more appropriate to meet the women's physical and emotional health, information and support needs. Some midwives considered that the introduction of new maternal postnatal records increased their workload, mainly as a consequence of colleagues not completing documentation as required. CONCLUSIONS: This was the first UK study to undertake a review of in-patient postnatal services. Involvement of midwives at the outset was essential to the success of the initiative. Midwives play a lead role in the planning and organisation of in-patient postnatal care and it was important to obtain their feedback on whether revisions were pragmatic and achieved anticipated improvements in care quality. Their initial involvement ensured priority areas for change were identified and implemented. Their subsequent feedback highlighted further important areas to address as part of CQI to ensure best quality care continues to be implemented. Our findings could support other maternity service organisations to optimise in-patient postnatal services.

Feeling cooped up after childbirth--the need to go out and about.

It is well known that recovering from childbirth can be a real challenge for many women. New mothers are, mostly, left to self care and manage their own recovery process. In seeking to feel like their old selves again mothers in this ethnographic study took longer than the traditional six weeks and needed to manage their feelings around being cooped up after childbirth. This article highlights an aspect of self care such as getting out and about, with or without the baby--a process that is pivotal to good recuperation and a sense of wellbeing after childbirth.

Maintaining practice: Challenges for nurse educators?

To reiterate the purpose of this editorial was not to delve into, and debate, the research evidence to substantiate or refute the purpose of 'linking with practice', in fact quite the opposite. Based upon our experiences we hope to encourage further debate on the purpose of nurse educators being in practice. It could be argued that as each author self-selected to work in practice for a week, there was a positive bias towards success. Indeed without exception this opportunity to 'be a nurse and do nursing', albeit undersupervision, had the desired outcome in that we achieved our predetermined goals and expectations. On an individual basis, it was a success. We eagerly became learners and absorbed information like a 'good' student should and received excellent feedback from practitioners. Moreover, our ability to recall and draw upon our years of nursing experience rapidly came to the fore thus enabling integration and participation in the work of nursing practice from a critical and in-depth perspective. We therefore conclude that being in practice, engaging in nursing and caring for people not only was/is a privilege but serves to enrich nurse educator's knowledge base. By origin we are all nurses, this was how we began and we feel strongly that this 'route or link in' should be strong, valued and respected as meaningful to being a nurse educator. After all we are not, (to coin the phrase rejected by the Royal College of Nursing in 2004) 'too posh to wash or too clever to care', in fact the opposite is the reality.