The AERO study: A feasibility randomised controlled trial of individually tailored exercise adherence strategies based on a brief behavioural assessment for older people with musculoskeletal conditions.

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.

Physiotherapists' perceptions of how patient adherence and non-adherence to recommended exercise for musculoskeletal conditions affects their practice: a qualitative study.

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.

Experiences of fatigue in daily life of people with acquired brain injury: a qualitative study.

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, and 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.Implications for rehabilitationAssessment of fatigue after brain injury should capture the multidimensional nature of fatigue as well as contextual information about exacerbating activities and environments.Development of personalised coping strategies that account for perceived triggers of different subtypes of fatigue may help ABI survivors to broaden their activity and social participation.Social support and opportunities to participate in personally meaningful activities may help prevent or break a negative cycle of fatigue and inactivity for some ABI survivors.

A cross-sectional study exploring levels of physical activity and motivators and barriers towards physical activity in haemodialysis patients to inform intervention development.

PURPOSE: To describe physical activity (PA) levels and motivators and barriers to PA amongst haemodialysis (HD) patients and to identify an appropriate approach to increasing their PA. METHODS: A cross-sectional mixed methods study conducted in a tertiary and satellite HD unit. One hundred and one participants aged 18 years and over, receiving regular HD 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 (HAP)) questionnaires. A subgroup was 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 males, 32 females). For 68/98 participants, adjusted activity scores from the HAP indicated "impaired" levels of PA; 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.Implications for rehabilitationHealthcare professionals should encourage and motivate haemodialysis patients to participate in physical activity (PA).As part of this approach, there is a need to increase patient knowledge of safe beneficial exercise activities and help individuals identify and overcome barriers.To allow for individualised approaches, clinical interventions should focus on other community activities that patients can do outside the dialysis clinic setting and utilise existing networks such as the British Renal Society Rehabilitation Network.The dialysis clinic provides professionals the opportunity to monitor and motivate patients.Relevant education is needed for staff about the benefits of PA and how to engage patients and their carers in safe and effective approaches.

Patients experience of fatigue in advanced heart failure.

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, diagnosis of New York Heart Association class III-IV heart failure with reduced ejection fraction and able to participate in interviews in their own language. Exclusion criteria was cognitive deficit Twenty-three participated in the study. Results: Participants (age 72.5 ± 9.5 years, 10/23 female), identified experiencing fatigue daily with 14/23 reporting it as their worst symptom or combined worst symptom with breathlessness. Three key themes were identified: fatigue as a physical barrier, psychological response to fatigue, and living with fatigue as a part of daily life. 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.

Development of an e-health app to support women prescribed adjuvant endocrine therapy after treatment for breast cancer.

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.

Factors affecting recruitment and retention of nurses who deliver clinical research: A qualitative study.

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 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 post for the next 5 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 desire for further change, concern about loss of clinical skills, rebalancing family/work responsibilities, short-term contracts, unsupportive employers and limited career progression.

Adjuvant endocrine therapy after breast cancer: a qualitative study of factors associated with adherence.

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 supportive interventions. METHODS: Interviews were conducted with 32 women who had been prescribed AET, 2-4 years following their diagnosis of breast cancer. Both adherers (n=19) and nonadherers (n=13) were recruited. The analysis was conducted using the Framework approach. RESULTS: Factors associated with adherence were as follows: managing side effects including information and advice on side effects and taking control of side effects, supportive relationships, and personal influences. Factors associated with nonadherence were as follows: burden of side effects, feeling unsupported, concerns about long-term AET use, regaining normality, including valuing the quality of life over length of life, and risk perception. CONCLUSION: Provision of timely information to prepare women for the potential side effects of AET and education on medication management strategies are needed, including provision of timely and accurate information on the efficacy of AET in reducing breast cancer recurrence and on potential side effects and ways to manage these should they arise. Trust in the doctor-patient relationship and clear patient pathways for bothersome side effects and concerns with AET are important. Training and education on AET for GPs should be considered alongside novel care pathways such as primary care nurse cancer care review and community pharmacist follow-up.

Exploration of dietary patterns and alcohol consumption in pregnant women in the UK: A mixed methods study.

BACKGROUND: fetal Alcohol Spectrum Disorders is a term used to describe a range of physical, cognitive and behavioural deficits in the offspring of women who drank alcohol during pregnancy. A growing body of evidence suggests alcohol consumption in the presence of poor maternal nutrition may increase the risk of harm to the developing fetus. OBJECTIVE: to investigate relationships between maternal dietary patterns and alcohol consumption, and explore which factors influence women's decisions about what to eat and drink during pregnancy. DESIGN: a mixed methods study comprising a questionnaire (paper-based and online) and semi-structured, in-depth interviews with a sub-sample of women who completed the questionnaire. PARTICIPANTS: women were eligible for inclusion if they were ≥16 years of age, pregnant and living in the UK and were recruited through antenatal clinics, specialist substance misuse antenatal clinics or via social media platforms; 350 women completed a questionnaire and a sub-sample of 6 women participated in an interview. METHODS: the questionnaire comprised the Alcohol Use Disorders Identification Test Consumption to measure alcohol consumption patterns and a Food Frequency Questionnaire to measure dietary intake. Dietary pattern analysis was conducted using Principle Components Analysis and linear regression models were used to explore relationships between dietary pattern scores and alcohol consumption. Analyses were adjusted for socio-demographic and lifestyle characteristics. Semi-structured, in-depth interviews were conducted face-to-face and analysed thematically. FINDINGS: two key dietary patterns were derived. Women who reported frequent alcohol consumption before and during pregnancy were more likely to adhere to the 'Prudent' dietary pattern compared to those who abstained. No relationships were observed between alcohol consumption and adherence to the 'Cafeteria' dietary pattern. Six key themes were identified through the qualitative analysis: (1) pregnancy as a time to review behaviour; (2) listen to your body - it will tell you what you need; (3) treats are still important - on special occasions; (4) social and cultural expectations constrain behaviour; (5) inconsistent or ambiguous information creates uncertainty; and 6) confidence increases following a successful pregnancy. CONCLUSIONS: those who drink low levels of alcohol during pregnancy may have better quality diets compared to women who report no alcohol consumption. The reasons for this are complex and influenced by social context and previous pregnancy experience, which should be considered when healthcare professionals provide advice during this period.

Psychometric properties of the Beliefs about Medicine Questionnaire-adjuvant endocrine therapy (BMQ-AET) for women taking AETs following early-stage breast cancer.

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 consistency of the BMQ-AET was much improved compared to the original BMQ and convergent validity showed predicted direction of correlation, although correlation with BMQ-AET concerns scale was low. Acceptability was good. The evaluation of the BMQ-AET is encouraging, and could facilitate future research around adherence to AET.

Living with breathlessness in chronic heart failure: a qualitative study.

AIMS AND OBJECTIVES: To explore how patients with Chronic Heart Failure 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 is a highly prevalent syndrome often with poor outcomes and in a patient group who are predominately elderly. Breathlessness is the main symptom experienced by patients and often relates to decompensation and hospitalisation, yet subtle changes described by patients are often not discussed with health care professionals. DESIGN: A descriptive qualitative design. METHODS: Twenty-five participants with heart failure with reduced ejection fraction (HF-rEF) from a tertiary referral centre in England were recruited. Each participant took part in a semi-structured interview exploring the effect of breathlessness had on their lives. Data was analysed through Braun and Clarke's framework for thematic analysis. RESULTS: All participants reported experiencing breathlessness daily. Four sub-themes were identified in their accounts: nature of breathlessness, emotional impact of breathlessness, impact of breathlessness on daily life and managing breathlessness. CONCLUSION: Participants were able to give vivid descriptions of breathlessness and the way it affected their lives. RELEVANCE TO CLINICAL PRACTICE: Health care professionals need to take account of each patient's personal assessment of their own breathlessness and how this is having an effect on their life and ability to undertake activities of daily living. Self-care management strategies need to be developed so that subtle changes can be assessed by the patient and reviewed by the healthcare professional to avoid hospitalisation and increased mortality risks.

The Experiences of Young Adults With Hodgkin Lymphoma Transitioning to Survivorship: A Grounded Theory Study.

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 and six women aged 21-39 years) recruited as part of a larger study of 28 young adult cancer survivors.
. METHODOLOGIC APPROACH: Semistructured interviews were conducted about two months after treatment completion, and follow-up interviews were conducted seven months later. The authors' grounded theory of positive psychosocial adjustment to cancer provided the conceptual framework.
. FINDINGS: Positive reframing, informal peer support, acceptance, and normalization helped young adults dismantle the threats of Hodgkin lymphoma during the course of treatment. However, 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 socializing.
. CONCLUSIONS: Informal support mechanisms, like peer support and patient navigator interventions, may be useful ways to further support young adults after treatment completion.
. INTEPRETATION: 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.

Psychometric properties of carer-reported outcome measures in palliative care: A systematic review.

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 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.

Dismantling the present and future threats of testicular cancer: a grounded theory of positive and negative adjustment trajectories.

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.

Patients' experience with cancer recurrence: a meta-ethnography.

OBJECTIVE: 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.

'Falling through gaps': primary care patients' accounts of breakdowns in experienced continuity of 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.

Labouring women who used a birthing pool in obstetric units in Italy: prospective observational study.

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.

Partners and close family members of long-term cancer survivors: health status, psychosocial well-being and unmet supportive care needs.

BACKGROUND: 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. 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 of breast, 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 member to complete a self-administered postal questionnaire. Data were analysed by cancer site and time since diagnosis. Matched comparisons were made between cancer patients in the linked study and their partners. RESULTS: An expression of interest was received from 330 partners/family members, and 257 questionnaires (77.9%) were returned. Health status and levels of anxiety and depression were comparable with population norms. Respondents reported an average of 2.7 unmet needs from 34 possible options. Hospital parking, information about familial risk, help managing fear of recurrence and coordination of care were the most cited unmet needs. There was little variation in 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 to positive outcomes and some unmet needs. CONCLUSIONS: Most partners/family members of long-term cancer survivors report few ongoing issues. However, a small proportion (<10%) have high levels of anxiety and/or moderate or strong unmet needs. Strategies for identifying this group and addressing their needs are required, while allowing the majority to resume normal life.

A qualitative study exploring the experience of the partners of cancer survivors and their views on the role of primary care.

PURPOSE: 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.

Characteristics, interventions, and outcomes of women who used a birthing pool: a prospective observational study.

BACKGROUND: 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 birthing pool. METHODS: A total of 8,924 women at low risk of childbirth complications were recruited from care settings in England, Scotland, and Northern Ireland. Descriptive analysis was performed. RESULTS: Overall, 7,915 (88.9%) women had a spontaneous 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 midwifery unit 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 epidural analgesia 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 required hospital transfer (265, 20% [95% CI: 17-22.2]) compared with those in an alongside midwifery unit (370, 31% [95% CI: 28.3-33.7]). Results for multiparas and newborns were similar across care settings. Twenty babies had an umbilical cord snap, 18 (90%) of which occurred during water birth. CONCLUSIONS: Birthing pool use was associated with a high frequency of spontaneous birth, particularly among nulliparas. Findings revealed differences in midwifery practice between obstetric units, alongside midwifery units, and the community, which may affect outcomes, particularly for nulliparas. No evidence was found for a difference across care settings in interventions or outcomes in multiparas or in outcomes for newborns. During water birth, it is important to prevent undue traction on the cord as the baby is guided to the surface.