Dr Jo Brett

Objectives: As part of a wider study describing the impact of a breast cancer diagnosis on lifestyle behaviours, this paper describes the impact of a breast cancer diagnosis on alcohol consumption and factors influencing consumption.

Methods: Cross-sectional online survey of 140 people (138 women) and interviews with 21 women diagnosed with breast cancer in the last 10 years.

Results: Of the 100 survey participants who drank alcohol 25% were drinking at increasing or higher risk levels and 17% strongly wanted to change their drinking behaviour. The habitual aspects of alcohol consumption were the strongest predictor of current alcohol consumption behaviours. Social norms and perceptions about conflicting information were substantial barriers to change.

Conclusions: Breast cancer survivors need accurate information about the risks of alcohol consumption and guidelines in order to make informed decisions about making changes to their behaviour. Interventions to support breast cancer survivors to reduce alcohol consumption need to focus on the development of healthy habits and may benefit from a focus which includes partners and friends.

Objective: Current Head and Neck cancer (HNC) follow-up models are considered sub-optimal at detecting recurrences. We describe the development of a patient-initiated follow up (PIFU) trial intervention support package, to support HNC patients to engage in PIFU self-care behaviors.

Methods: An intervention mapping approach, informed by evidence synthesis, theory and stakeholder consultation, guided intervention development. Data sources included a patient survey (n=144), patient interviews (n=30), 7 workshops with patients (n=25) and caregivers (n=3) and 5 workshops with health professionals (n=21).

Results: The intervention (‘ACT now & check-it-out’) comprises an education and support session with a health professional and an app and/or a booklet for patients. The main targets for change in patient self-care behaviors were: assessing what is normal for them; regularly checking for symptom changes; prompt help-seeking for persistent/new symptoms; self-management of fear of recurrence; engaging with the intervention over time.

Conclusions: We have developed an evidence, person and theory-based intervention to support PIFU self-care behaviors in HNC patients.

Practice Implications: A trial is underway to assess the effectiveness and cost-effectiveness of the intervention. If successful, this intervention could be adapted for patients with other cancers or diseases, which is important given the recent shift towards PIFU pathways.

Introduction

High-quality pre-registration student nurse training and development is integral to developing a sustainable and competent global nursing workforce. Internationally, student nurse recruitment rates have increased since the onset of the COVID-19 pandemic; however, attrition rates for student nurses are high. During the pandemic, many student nurses considered leaving the programme due to academic concerns, feeling overwhelmed, and doubting their clinical skills. Little was known about the extent to which nursing education prior to COVID-19 had prepared students for their role in managing the healthcare crisis or the impact on their resilience. Thus, this study aimed to explore how the COVID-19 pandemic impacted on the resilience levels of student nurses across the United Kingdom.

Methods

Data were collected as part of a multi-site qualitative study named ‘COV-ED Nurse’ and involved pre-placement surveys, placement diaries, and post-placement interviews with nursing students. Student nurse participants were recruited from across the United Kingdom, from all years of study, and from all four nursing branches: children, adult, mental health, and learning disabilities. Participants were asked to complete a pre-placement survey that collected demographic details and information about their placement expectations. They were also asked to record a weekly audio-visual or written diary to describe their placement experiences, and, on completion of their placements, students were interviewed to explore their experiences of this time. Data were thematically analysed using the Framework Approach. Ethical approvals were obtained.

Results

Two hundred and sixteen students took part in the wider study. The current study involved a subset of 59 students’ data. Four main themes were identified: ‘coping with increased levels of acuity’, ‘perceived risks of the pandemic’, ‘resilience when facing uncertainty and isolation’, and ‘the importance of coping mechanisms and support structures.’

Discussion

From this study, we have generated insights that can be applied to nursing research, education, policy, and practice and identified the wide-ranging impact that the COVID-19 pandemic had on student nurses and their abilities to remain resilient in an unstable environment. The value of communication and support networks from a wide range of sources was highlighted as key to navigating many uncertainties. In addition, the extent to which students were able to navigate their personal and professional roles and identities influenced their ability to cope with and continue along their training pathways.

Alcohol is a causal factor in about 10% of breast cancer (BCa) cases, but awareness of this link is low. This study explored how to raise awareness and inform the development of an intervention using the COM-B model (capability, opportunity, motivation, behavior) framework. Eight online focus groups were conducted with 36 participants (6 expert stakeholders, and 30 women aged 40-65). Participants reflected on a package of information about alcohol and BCa and discussed how to impart this information and encourage women to reduce drinking.  Thematic analysis of focus group transcripts was undertaken. Three themes were identified: understanding ineffective messaging; transitions and challenges; and message acceptability. Current health information about alcohol was perceived as judgmental and BCa was put down to chance. Mid-life consisted of many challenges that could lead to increased consumption, but menopause transition may be a key moment for alcohol reduction.  Barriers and enablers to communicating risk information and encouraging alcohol reduction were mapped onto the COM-B model. Psychological capability (relating to knowledge), social opportunity (in the form of social pressure) and automatic motivation (relating to drinking to cope) were barriers to behavior change.  These will be targeted in an alcohol reduction intervention. It is important to tailor information to women’s experiences, taking into account the social benefits of drinking, and encourage the development of healthy coping strategies. Acceptable intervention messages may include personal stories, clear statistics, and suggest healthy alternatives to drinking. It is vital that messaging does not appear judgmental or patronizing. 

Objective: Oropharyngeal cancer, a type of head and neck cancer (HNC), the incidence of which is increasing, often affects younger patients than traditional HNC, having distinct psychosocial consequences. Treatment side effects mean many rely on informal caregivers following (chemo)radiotherapy. The purpose of this review was to describe current understanding of the psychosocial experiences of these caregivers in the post-treatment phase.

Methods: A systematic search for relevant studies between January 2010 and October 2022 in three electronic databases (CINAHL, MEDLINE and PsycINFO) was followed by citation searching. Inclusion criteria were developed to ensure studies explored caregivers' experiences during the post-treatment phase following oropharyngeal cancer (chemo)radiotherapy. Thematic analysis informed by the 'Cancer Family Caregiving Experience Model', identified stressors, appraisals and responses. Themes evolved through the synthesis of recurrent concepts across the studies and a narrative of psychosocial experiences and their impact upon caregiver well-being was developed.

Results: Fifteen HNC papers which included exploration of the psychosocial experiences of oropharyngeal cancer caregivers following (chemo)radiotherapy were selected. Findings were synthesised to develop five themes: an emotional struggle, supporting nutrition, altered lifestyles, changes within relationships and support needs.

Conclusions: The completion of (chemo)radiotherapy signalled a transition for these caregivers as they undertook burdensome responsibilities. Experiences indicated that preparation for the role, assessment of needs, and targeted support is required. Additionally, caregivers' recognition by healthcare professionals as caring partners could help moderate this demanding experience.

Problem identification.

Anxiety and depression are more prevalent in hematological cancer patients who experience unpredictable illness trajectories and aggressive treatments compared to solid tumor patients. Efficacy of psychosocial interventions targeted at blood cancer patients is relatively unknown. This systematic review examined trials of physical health and psychosocial interventions intending to improve levels of anxiety, depression, and/or quality of life in adults with hematological cancers.

Literature search.

PubMed and CINAHL databases were used to perform a systematic review of literature using PRISMA guidelines.

Data evaluation/synthesis.

Twenty-nine randomized controlled trials of 3232 participants were included. Thirteen studies were physical therapy, nine psychological, five complementary, one nutritional and one spiritual therapy interventions. Improvements were found in all therapy types except nutritional therapy.

Conclusions.

Interventions that included personal contact with clinicians were more likely to be effective in improving mental health than those without.

Implications for psychosocial oncology.

Various psychosocial interventions can be offered but interactive components appear crucial for generating long-standing improvements in quality of life, anxiety and depression.

Background: Breast cancer is the most common cancer in women worldwide. Approximately 80% of breast cancers are oestrogen receptor positive (ER+). Patients treated surgically are usually recommended adjuvant endocrine therapy (AET) for 5-10 years. AET significantly reduces recurrence, but up to 50% of women do not take it as prescribed.

Objective: To co-design and develop an intervention to support AET adherence and improve health-related quality-of-life (QoL) in women with breast cancer.

Methods:  Design and development of the HT&Me intervention took a person-based approach and was guided by the Medical Research Council framework for complex interventions, based on evidence and underpinned by theory. Literature reviews, behavioural analysis, and extensive key stakeholder involvement informed ‘guiding principles’ and the intervention logic model. Using co-design principles, a prototype intervention was developed and refined. 

Results: The blended tailored HT&Me intervention supports women to self-manage their AET. It comprises initial and follow-up consultations with a trained nurse, supported with an animation video, a web-app and ongoing motivational ‘nudge’ messages. It addresses perceptual (e.g. doubts about necessity, treatment concerns) and practical (e.g. forgetting) barriers to adherence and provides information, support and behaviour change techniques to improve QoL. Iterative patient feedback maximised feasibility, acceptability, and likelihood of maintaining adherence; health professional feedback maximised likelihood of scalability.

Conclusions: HT&Me has been systematically and rigorously developed to promote AET adherence and improve QoL, and is complemented with a logic model documenting hypothesised mechanisms of action. An ongoing feasibility trial will inform a future randomised control trial of effectiveness and cost-effectiveness.

Objectives: The psychological impact of a haematological malignancy is well documented.  However, few studies have assessed the provision of psychological support to people with these diagnoses. This study explores the extent and nature of psychological support for people diagnosed with haematological cancer to inform future service provision.

Design: This study consisted of an online survey with healthcare professionals (Phase 1) and qualitative interviews with patients (Phase 2) and key health professionals (Phase 3).  A descriptive analysis of survey data and thematic analysis of interviews were conducted

Participants:  Two hundred health professionals practising in England completed the survey.  Twenty-five interviews were conducted with people diagnosed with haematological cancer in the past three years, and ten with key health professionals, including haematologists, cancer nurse specialists and psychologists were conducted.

Primary Outcome Measures: Level of psychological assessment undertaken with people with haematological cancer, and level and nature of psychological support provided.

Results:  Less than half(47.3%) of survey respondents strongly agreed/agreed that their patients were well supported in terms of their psychological well-being and approximately half (49.4%) reported providing routine assessment of psychological needs of patients, most commonly at the time of diagnosis or relapse. Patients described their need for psychological support, their experiences of support from health professionals and their experiences of support from psychological therapy services.  There was considerable variation in the support patients described receiving.  Barriers to providing psychological support reported by health professionals included time, skills, resources and patient barriers. Most doctors(85%) and 40% of nurse respondents reported receiving no training for assessing and managing psychological needs.   

Conclusions: Psychological well-being should be routinely assessed, and person-centred support should be offered regularly throughout the haematological cancer journey.  Greater provision of healthcare professional training in this area and better integration of psychological support services into the patient care pathway is required.

Objectives: Standardised reporting of patient and public involvement (PPI) in research studies is needed to facilitate learning about how to achieve effective PPI.  The aim of this evaluation was to explore the impact of PPI in a large UK study, the Life After Prostate Cancer Diagnosis (LAPCD) study, and to explore the facilitators and challenges experienced.

Design:  Mixed methods study using an online survey and semi-structured interviews. Survey and topic guide were informed by systematic review evidence of the impact of PPI and by realist evaluation.  Descriptive analysis of survey data and thematic analysis of interview data were conducted. Results are reported using the GRIPP2 reporting guidelines.

Setting: Life After Prostate Cancer Diagnosis (LAPCD) study, a UK-wide patient-reported outcomes study

Participants: User Advisory Group (UAG) members (n=9) and researchers (n=29) from the LAPCD study

Results: Impact was greatest on improving survey design and topic guides for interviews, enhancing clarity of patient facing materials, informing best practice around data collection, and ensuring steering group meetings were grounded in what is important to the patient. Further impacts included ensuring patient focussed dissemination of study findings at conference presentations and in lay summaries.

Facilitating context factors included clear aims, time to contribute, confidence to contribute, and feeling valued and supported by researchers and other UAG members.  Facilitating mechanisms included embedding the UAG within the study as a separate work-stream, allocating time and resources to the UAG reflecting the value of input, and putting in place clear communication channels.  Hindering factors included time commitment, geographical distance, and lack of standardised feedback mechanisms.

Conclusion: Including PPI as an integral component of the LAPCD study and providing the right context and mechanisms for involving the UAG helped maximise the programme’s effectiveness and impact.  

Integrated Care Systems (ICS) in England are partnerships between different health and social care organisations, to co-ordinate care and therefore provide more effective health and social care provision. The objective of this article is to explore the role of the ‘Voluntary, Community and Social Enterprise’ (VCSE) sector in integrated care systems. In particular, the paper aims to examine recent experiences of the voluntary sector in responding to the Covid-19 pandemic, and the lessons that can be learnt for integrated care provision.

The article focuses on the case of Oxfordshire (UK), using a mixed methods approach that included a series of semi-structured interviews with key informants in health and the VCSE as well as online surveys of GPs and organisations in the VCSE. These were complemented by two contrasting geographical case studies of community responses to Covid-19 (one urban, one rural). Data were collected between April and June 2021. Interviewees were recruited through professional and community networks and snowball sampling, with a total of 30 semi-structured interviews being completed. Survey participants were recruited through sector-specific networks and the research arm of doctors.net.uk, with a total of 57 survey respondents in all.

The research demonstrated the critical role of social prescribing link workers and community development workers in forging connections between the health sector and the VCSE at the hyper-local level, particularly in the urban case study. In the rural case study, the potential role of the Parish Council in bringing the two sectors together was highlighted, to support community health and wellbeing through stronger integrated working between the two sectors. The article concludes that enhanced connections between health and the VCSE will strengthen the outcomes of Integrated Care Systems.

Purpose: Current policy in the United Kingdom (UK) recommends that people with breast cancer (PWBC) are managed in follow-up pathways that suit their needs. With an increasing trend towards patient-initiated follow-up (PIFU) pathways for PWBC, this study conducted qualitative research exploring PWBC’s experiences of a nurse-led PIFU service (termed ‘Supported Early Discharge’) to inform how PIFU pathways could be optimised.

Method: PWBC on a PIFU pathway were recruited from two UK hospitals (one large cancer centre, one district general hospital) as part of a wider mixed-methods study (N=118). Following completion of a series of surveys, a purposive subsample of 20 women were interviewed in-depth about their experiences. Thematic analysis was conducted. 

Results: The majority of participants described positive views towards being on PIFU; however a significant minority struggled with uncertainties and difficulties related to: accessing ongoing care and support; performing breast self-examination (BSE); managing ongoing treatment side-effects; and fear of recurrence. Themes included: self-efficacy to manage own health; barriers and facilitators to help-seeking on a PIFU pathway; effective information sharing about side effects; preferences for personalised care; emotional wellbeing on PIFU- influences on fear of recurrence. A novel conceptual model is presented that highlights influences on self-management during PIFU.

Conclusions: Findings highlight ways in which PIFU pathways could be further optimised through greater and more effective education on BSE and recognising signs of recurrence, information on when and how to seek further help with any problems, targeted provision of psychological support, and clearer signposting to support for ongoing side-effects.

Objective

The UK incidence of oropharyngeal cancer has risen sharply over the last 30 years with an increase in human papillomavirus (HPV) associated diagnoses, most prevalent in younger, working age populations. This meta-ethnography explores the psychosocial needs of HPV+ve oropharyngeal cancer patients during early recovery following (chemo)radiotherapy.

Methods

Meta-ethnography methods were used, based on the approach of Noblit and Hare. Systematic searches for relevant qualitative studies were conducted in five electronic databases (MEDLINE, PubMed, CINAHL, PsycINFO and Cochrane database) between 2010 and 2021, followed by citation searching.

Results

Twenty-three papers exploring the psychosocial needs of HPV+ve oropharyngeal cancer patients after treatment were included. Findings were synthesised to develop five constructs: ‘gaps in continuity of support from healthcare professionals’ reflecting unmet needs; ‘changes to self-identity’ revealing the comprehensive disruption of this disease and treatment; ‘unrealistic expectations of recovery’ highlighting the difficulty of preparing for the impact of treatment; ‘finding ways to cope’ describing the distinct complexity of this experience; and ‘adjusting to life after the end of treatment’ exploring how coping strategies helped patients to regain control of their lives.

Conclusions

Completing (chemo)radiotherapy signalled a transition from hospital-based care to home-based support, challenging patients to address the constructs identified. An unexpectedly difficult and complex recovery meant that despite a favourable prognosis, poor psychosocial well-being may threaten a successful outcome. The provision of tailored support is essential to facilitate positive adjustment.

Objective

The objective of this work was to explore head and neck cancer (HNC) patients' and their family members' views on acceptability and feasibility of patient-initiated follow-up (PIFU), including concerns and anticipated benefits.

Methods

Patients were recruited from UK HNC clinics, support groups and advocacy groups. They completed a survey (n = 144) and/or qualitative interview (n = 30), three with a family member. Qualitative data were analysed thematically, quantitative data using descriptive statistics.

Results

Preference for follow-up care in HNC was complex and individual. Many patients thought PIFU could beneficially reallocate health care resources and encourage self-management. Patients' main concerns with PIFU were losing the reassurance of regular clinic appointments and addressing mental well-being needs within PIFU, possibly using peer support. Patients were concerned about their ability to detect recurrence due to lack of expertise and information. They emphasised the importance of a reliable, direct and easy urgent appointment service and of feeling supported and heard by clinicians. Patients believed family and friends need support.

Conclusion

PIFU may be feasible and acceptable for certain HNC patients, providing it addresses support for mental well-being, provides quick, reliable and direct clinician access and information on “red flag” symptoms, and ensures patients and their caregivers feel supported.

Background.

South Asians make up the largest ethnic minority group in England and Wales.  Yet this group is underrepresented in some programmes to promote health, such as cancer screening.  A challenge to addressing such health disparities is the difficulty of recruiting South Asian communities to health research. Effective recruitment requires the development of participants’ knowledge about research and their trust.  Researchers also need to increase their cultural understanding and to think about how they will communicate information despite language barriers.  This article describes the use of an organogram, informed by social network analysis, to identify the community contacts likely to encourage participation of South Asian adults (aged 50 to 75 years) in interviews to identify the facilitators of home bowel cancer screening.

Methods.

We developed an organogram which represented the directional relationships between organizations and key informants against the level of recruitment success to visualize where networking engaged participants. Primary data were recruitment records (February 2019-March 2020).

Results

The majority of participants were recruited from faith centres. The topic of bowel cancer was a barrier for some, but recruitment was more successful with the advocacy of leaders within the South Asian communities. Visualizing community networks helped the research team to understand where to concentrate time and resources for recruitment.

Conclusions.

The organizational chart was easy to maintain and demonstrated useful patterns in recruitment successes.

Policy summary.

An organogram can provide a practical tool to identify the best strategies and community contacts to engage South Asian participants in studies to inform policy on health promotion activities such as cancer screening. 

Background: Men with prostate cancer (PCa) often experience sexual dysfunction following diagnosis and treatment, yet little is known about the support they receive to deal with this.

Aim: To explore men's experiences of support for sexual dysfunction following PCa diagnosis.

Methods: This study included a U.K.-wide survey of men 18-42 months post-diagnosis of PCa, identified through cancer registries. The survey measured sexual function and the extent to which men perceived sexual dysfunction to be a problem (Expanded Prostate Cancer Index Composite-26), access to and experience of medications, devices, and specialist services for sexual dysfunction, and included a free-text question for further comments. Analysis focussed on men who reported poor sexual function, which they considered a moderate or big problem. Descriptive statistics explored the characteristics of men offered intervention and those that found this helpful. Free-text responses were analyzed using thematic analysis.

Outcome: The main outcome of this study was to assess access to and experience of medications, devices, and specialist services for sexual dysfunction.

Results: 39.0% of all survey respondents (13,978/35,823) reported poor sexual function, which they considered a moderate or big problem. 51.7% of these men were not offered any intervention to aid sexual functioning. 71.9% of those offered an intervention reported trying it, of whom 48.7% found the intervention helpful. Men treated with surgery or brachytherapy were most likely to be offered an intervention. Medication was the most commonly offered intervention and 39.3% of those who tried medication found this helpful. Although offered less often, approximately half of the men who tried devices or attended specialist services found the intervention helpful. Free-text responses indicated that barriers to accessing support included inadequate information and support from healthcare professionals, embarrassment, negative views about treatment options, concerns about side effects and safety, and inconsistencies between secondary and primary care. Barriers to continuing use included limited effectiveness of treatments, inadequate ongoing support, and funding constraints. Drivers of sexual recovery included patient proactivity and persistence with trying different treatment options and ongoing support from health professionals.

Clinical implications: There is an urgent need to ensure that all men are offered, and have equal access to, sexual care support, with referral to specialist services when required.

Strengths & limitations: This study presents data from a large, U.K.-wide, population-based study of men with PCa and includes quantitative and qualitative findings. The possibility of non-response bias should, however, be considered.

Conclusion: There are significant shortcomings in the support offered to U.K. men with sexual dysfunction following diagnosis and treatment for PCa which need to be addressed.

Lifecourse epidemiology suggests that preconception is a valuable opportunity for health promotion with young women.  Yet young women are less likely than older women to be research participants, limiting evidence about their needs and risks.  Marketing data indicate that young adults are not engaged with one advertising strategy because they transition through three life stages: (1) limited independence and focus on own interests, (2) increased independence and time with peers, (3) establishing a home and family.  The aim of this study was to explore whether these marketing lifestage categories could inform the tailoring of strategies to recruit young women.Three focus groups per lifestage category were conducted (49 women aged 16 to 34 years).  Lifestage category (1) was represented by further education students, category (2) by women in workplaces, and (3) by mothers.  Questions explored participants’ lifestyles, identity, reasons for  participation in the current study and beliefs about researchers.   Three major themes were identified through framework analysis: Profiling how young women spend their time; Facilitators of participating in research; and Barriers to participating.  Students and women in work valued monetary remuneration whereas mothers preferred social opportunities.  Participants’ perceived identity influenced whether they felt useful to research.   All groups expressed anxiety about participation.  Altruism was limited to helping people known to participants.  Therefore, the marketing categories did not map exactly to differences in young women’s motivations to participate but have highlighted how one recruitment strategy may not engage all.   Mass media communication could, instead, increase familiarity and reduce anxiety about participation.

Objectives. To explore UK clinicians’ beliefs and behaviours around recommending e-cigarettes as a smoking cessation aid for patients with cancer.

Design. Cross-sectional online survey.

Setting. England, Wales, Scotland and Northern Ireland.

Participants. Clinicians involved in the care of patients with cancer.

Primary and secondary outcomes. Behavioural Change Wheel capability, opportunity and motivation to perform a behaviour, knowledge, beliefs, current practice around e-cigarettes and other smoking cessation practices.

Method. Clinicians (n=506) completed an online survey to assess beliefs and behaviours around e-cigarettes and other smoking cessation practices for patients with cancer. Behavioural factors associated with recommending e-cigarettes in practice were assessed.

Results. 29% of clinicians would not recommend e-cigarettes to patients with cancer who continue to smoke. Factors associated with recommendation include smoking cessation knowledge (OR 1.56, 95% CI 1.01 to 2.44) and e-cigarette knowledge (OR 1.64, 95% CI 1.06 to 2.55), engagement with patients regarding smoking cessation (OR 2.12, 95% CI 1.12 to 4.03), belief in the effectiveness of e-cigarettes (OR 2.36 95% CI 1.61 to 3.47) and belief in sufficient evidence on e-cigarettes (OR 2.08 95% CI 1.10 to 4.00) and how comfortable they felt discussing e-cigarettes with patients (OR 1.57 95% CI 1.04 to 2.36).

Conclusion. Many clinicians providing cancer care to patients who smoke do not recommend e-cigarettes as a smoking cessation aid and were unaware of national guidance supporting recommendation of e-cigarettes as a smoking cessation aid.

Purpose. Due to recent treatment advances, men are increasingly living longer with advanced prostate cancer (PCa). This study sought to understand men’s experiences of living with and adjusting to advanced hormone-responsive PCa and how this influenced their quality of life (QoL), in order to highlight how support could be optimized.

Methods. Participants were recruited through a UK wide survey—the ‘Life After Prostate Cancer Diagnosis’ study. In-depth telephone interviews were conducted with 24 men (aged 46–77 years) with advanced (stage IV) hormone-responsive PCa diagnosed 18–42 months previously. Thematic analysis was undertaken using a framework approach.

Results. Most participants perceived their QoL to be relatively good, which was influenced by the following factors (enablers to ‘living well’ with PCa): a sense of connectedness to others, engagement in meaningful activities, resources (social, cognitive, financial), ability to manage uncertainty, utilization of adjustment strategies and support, communication and information from health professionals. Barriers to ‘living well’ with PCa were often the converse of these factors. These also included more troublesome PCa-related symptoms and stronger perceptions of loss and restriction.

Conclusions. In our study, men living with advanced hormone-responsive PCa often reported a good QoL. Exploring the influences on QoL in men with advanced PCa indicates how future interventions might improve the QoL of men who are struggling. Further research is required to develop and test interventions that enhance QoL for these men.

Purpose: To explore the experiences of men with prostate cancer identified as having psychological distress and to identify factors influencing distress.

Participants and setting: 28 men with prostate cancer diagnosed 18-42 months earlier, identified as having psychological distress on survey measures. 

Methodologic approach: Semi-structured telephone interviews were conducted. Thematic analysis using a Framework approach was used. 

Findings:  Men with psychological distress had strong perceptions of ‘loss’ towards a) self (identity, sexuality/masculinity, self-confidence), b) function (physical, activities), c) connection (relational, social, community) and d) control (future, emotional). Psychological vulnerability appeared heightened in particular groups of men. Maladaptive strategies of emotional concealment, help-seeking avoidance and withdrawal appeared to contribute to distress. 

Implications for nursing: Distress in men with prostate cancer is multifaceted. Men with distress should be identified and offered support. Nursing and/or peer-led interventions are required.   

Knowledge Translation: 

1. A significant minority of men with prostate cancer report distress 18-42 months following diagnosis. Screening tools for psychological difficulties may help identify men in need of further support.

2. The author’s conceptual model highlights pre-existing and treatment related factors, as well as maladaptive coping strategies influencing distress. Greater support with restoring self-identity and confidence is needed. 

3. Nurse-led patient education and information on managing psychological and physical concerns, as well as sign-posting to peer support, community or online support groups is required. 

Background: Focus group discussions for data collection in nursing research has increased. Data from focus groups provides rich in-depth understanding of a phenomenon, which can inform clinical practice. Guidance on facilitating focus groups has been developed, however there is a lack of guidance on techniques of translating, analysing and presenting focus group data from countries with linguistic differences. Aim: To explore contemporary examples of translating, analysing and presenting focus group data from countries with linguistic differences and provide an in-depth example of the decision making process from one study with focus group data from two countries. Methods: A discussion paper to guide recommendations for focus group data analysis from countries with linguistic differences. Discussion: The experience from undertaking focus groups across two countries and contemporary nursing research has highlighted the need for a clear rationale and transparency in the reporting of translating, analysing and presentation of data. Detailed and transparent reporting needs to include not only the translation process, but when this occurred, either pre
or post analysis, and when or if the data was amalgamated. Implications for research/practice: There is a clear need for evidence-based guidance on the reporting of translation, transcription and analysis of focus group data from countries with linguistic difficulties.

Objectives. Patients diagnosed with pancreatic cancer have the poorest survival prognosis of any cancer.  This survey aimed to describe their experiences of care and supportive care needs to inform future service provision. Design. Cross-sectional questionnaire survey of pancreatic cancer patients in the UK. Setting. Individuals at any stage along the care pathway were recruited via five NHS sites in the UK, and online, from January to June 2018. Participants. 274 individuals completed the questionnaire (78% (215) were completed online). Approximately half of participants were diagnosed within the last year (133/274).  Of 212 providing gender details, 82 were male and 130 female. Ninety percent (192/213) described themselves as White British. Primary Outcome Measures. Experiences of communication and information; involvement in treatment decisions; supportive care needs. Results. Communication with, and care received from, clinical staff were generally reported positively. However, 29% (75/260) of respondents did not receive enough information at diagnosis, and 10% (25/253) felt they were not involved in decisions about their treatment, but would have liked to be.   Supportive care needs were greatest in psychological and physical/daily living domains.  49% (108/221) respondents reported one or more moderate/high unmet needs within the last month, of which the most commonly reported were: dealing with uncertainty about the future; fears about the cancer spreading; not being able to do things they used to; concerns about those close to them; lack of energy; anxiety; feelings of sadness and feeling down/depressed. Experiences were poorer, and unmet supportive care needs greater, in patients with unresectable disease. Conclusions. Patients with pancreatic cancer have unmet information and support needs across the cancer trajectory. Psychological and physical support appear to be the biggest gaps in care.  Needs should be assessed and supportive care interventions implemented from the point of diagnosis, and monitored regularly to help patients live as good a quality of life as possible.

Objective: To explore adjustment strategies adopted by Black African (BA) and Black Caribbean (BC) men in the UK as a response to the impact of PCa diagnosis and treatment effects.
Methods: Men were recruited through the UK-wide ‘Life After Prostate Cancer Diagnosis’ (LAPCD) survey. Telephone interviews were conducted with men (n=14) with BA and BC backgrounds between 18-42 months post-diagnosis. Data were analysed using a Framework approach.  
Results: Most men (n=12) were born outside the UK, were married (n=9) and employed (n=9). Median age was 66 years (range: 55-85). Six overarching themes emerged: a strong reliance upon faith beliefs; maintaining a ‘positive’ front; work as distraction; non-disclosure of diagnosis even amongst family members, influenced by stigma and masculinity concerns; active awareness-raising amongst a minority, and; support-seeking from close community. A few men emphasised a need to ‘pitch’ awareness-raising messages appropriately. Potential links existed between faith beliefs, presenting a positive front, community support-seeking and local awareness-raising.
Conclusion: The provision of patient-centred care requires cultural sensitivity. Interventions that challenge stigma and mens’ reluctance to disclose problems associated with PCa and treatment may encourage help-seeking for symptom support. Research is needed to determine how best awareness-raising messages should be conveyed to black men.  

Objective. To explore factors that influence parents' decision-making for mode of breech birth at term gestation. Design. A grounded theory study conducted using a constructivist approach. Semi-structured telephone interviews were recorded and transcribed verbatim and analysed using the software NVivo for Mac version 11.4.0. Setting. England, UK. Participants. Twelve parents with breech presentation confirmed by ultrasound at ≥36+0 weeks gestation were recruited from several UK social media forums. Findings. Two core themes impacting on a parent's decision-making process for term breech birth were identified. Firstly, a framework of potential influences including partner and relationship, family and friends, health professionals, own birth culture, self, shared experiences and the time available for decision-making. Secondly, mortality salience, or parental focus on risk of potential injury or death associated with birth, was found to be central to every participant's narrative. Key conclusions. This study highlights the individuality and wider framework of parent's decision-making influences for term breech birth, and demonstrates to care providers the conflicted emotions that may be experienced. The findings of this study may guide midwives and other professionals in providing person-centered, non-judgmental, balanced and evidence-based mode of term breech birth counselling. Implications for practice. Health professionals should adopt a parentcentred approach to counselling for mode of term breech birth, considering parents' wider influences in their decision-making and the fear of injury or death surrounding both vaginal breech birth and caesarean section. They can also facilitate parents to understand the influences that might be guiding their own decision-making.

Objective. To address concerns over the psychological impact of being on a monitoring pathway following prostate cancer (PCa) diagnosis, this study compared the psychological status of men on active surveillance (AS) or watchful waiting (WW) with men on active treatment (AT), and explored psychological adjustment in men on AS/WW. Methods. Cross-sectional survey of UK men diagnosed with PCa 18-42 months previously (n=16,726, localised disease at diagnosis) and telephone interviews with 24 men on AS/WW. Psychological outcomes were measured using two validated scales (Short Warwick-Edinburgh Mental-Well-being Scale; Kessler Psychological Distress Scale). Univariable and multivariable analyses compared outcomes between men on AS/WW and AT. Thematic analysis of interviews was undertaken, informed by a previously developed theory of adjustment to cancer. Results. 3,986 (23.8%) respondents were on AS/WW. Overall, psychological outcomes were similar or better in men on AS/WW compared to those receiving AT (SWEMWBS: Poor well-being; 12.3% AS/WW vs 13.9% AT, adjusted OR=0.86, 95% CI 0.76-0.97; K6: severe psychological distress; 4.6% vs 5.4%, adjusted OR=0.90, 95% CI 0.74-1.08). Interviews indicated most men on AS/WW had adjusted positively. Men with poorer well-being were less able to accept, reframe positively and normalise the diagnosis, described receiving insufficient information and support, and a lack of confidence in their health-care professionals. Conclusions. Most men on AS/WW cope well psychologically. Men making treatment decisions should be given this information. Psychological health should be assessed to determine suitability for AS/WW, and at monitoring appointments. A clear action plan and support from healthcare professionals is important.

Written information can be an essential source of support in the promotion of lifestyle changes after a cancer diagnosis. This study aimed to identify and assess the quality of available online Patient Information Materials (PIMs) in relation to diet and nutrition for pelvic cancer patients. The online sources of the National Health Service, cancer centres and charitable organisations throughout the UK were searched. Content was assessed using an evidence-based checklist, and readability with two validated formulas. Consumer feedback was sought through Patient and Public Involvement (PPI) groups. Forty PIMs were identified; four were designed specifically for pelvic cancers (bladder, bowel, prostate) and 36 were generic (relevant for all cancers). Most PIMs had a good content score, with PIMs from charities scoring higher overall than PIMs from cancer centres [32 (4) Vs 23 (11), P

Objectives. To explore the experience of treatment decision-making (TDM) amongst men diagnosed with stage 1-3 prostate cancer. Methods. Mixed-methods study incorporating UK wide cross-sectional postal survey of men 18-42 months post-diagnosis and semi-structured interviews with a subsample (n=97), including men who received both radical treatments and active surveillance. Interview data was analysed using a Framework approach. Findings. Within the context of TDM, ‘drivers’ included men’s preferences for decision-making responsibility or clinical direction, relative treatment intrusiveness or desire for excision, and work, personal and social life priorities; ‘facilitators’ were mechanisms such as shared decision-making utilised by clinicians to enact, but also sometimes challenge drivers. Drivers and facilitators can conflict, challenging patient empowerment. Men frequently undertook greater TDM responsibility than they desired, with no clinical recommendations; others reported receiving conflicting clinical recommendations. Information on potential side effects was often reported as inadequate. Unchallenged preferences, absence of clinical recommendations and inadequate preparation for side effects sometimes led to decision regret. Conclusions. TDM should involve men exercising preferences and priorities in discussion with clinicians. Men are not empowered when required to take more TDM responsibility than desired or when their potentially inappropriate preferences are unchallenged. Clinicians should ensure patients do not receive conflicting recommendations.

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.

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. 

Background: While the PPI evidence base has expanded over the last decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what context, for whom and why. 
 

Objective: To develop international consensus on the key items to report to enhance the quality, transparency and consistency of the PPI evidence base. To collaboratively involve patients as research partners at all stages in the development of GRIPP 2. 
 

Methods: The EQUATOR method for developing reporting guidelines was utilised. The original GRIPP (Guidance for Reporting Involvement of Patients and the Public) checklist was revised, based on updated systematic review evidence. A three round Delphi survey was used to develop consensus on items to be included in the guideline. A subsequent face-to-face meeting produced agreement on items not reaching consensus during the Delphi process.        
   

Results: 143 participants agreed to participate in round 1, with an 86% (123/143) response for round 2 and a 78% (112/143) response for round 3. The Delphi survey identified the need for long-form (LF) and short-form (SF) versions. GRIPP2-LF includes 34 items on aims, definitions, concepts and theory, methods, stages and nature of involvement, context, capture or measurement of impact, outcomes, economic assessment and reflections, and is suitable for studies where the main focus is PPI.  GRIPP2-SF includes 5 items on aims, methods, results, outcomes and critical perspective and is suitable for studies where PPI is a secondary focus. 
 

Conclusions: GRIPP2-LF and GRIPP2-SF represent the first international evidence-based, consensus-informed guidance for reporting patient and public involvement in research. Both versions of GRIPP2 aim to improve the quality, transparency and consistency of the international PPI evidence base, to ensure PPI practice is based on the best evidence. GRIPP 2 is co-published with Research Involvement and Engagement. 

Background: While the PPI evidence base has expanded over the last decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what context, for whom and why. 
 

Objective: To develop international consensus on the key items to report to enhance the quality, transparency and consistency of the PPI evidence base. To collaboratively involve patients as research partners at all stages in the development of GRIPP 2.
 

Methods: The EQUATOR method for developing reporting guidelines was utilised. The original GRIPP (Guidance for Reporting Involvement of Patients and the Public) checklist was revised, based on updated systematic review evidence. A three round Delphi survey was used to develop consensus on items to be included in the guideline. A subsequent face-to-face meeting produced agreement on items not reaching consensus during the Delphi process.
           

Results: 143 participants agreed to participate in round 1, with an 86% (123/143) response for round 2 and a 78% (112/143) response for round 3. The Delphi survey identified the need for long-form (LF) and short-form (SF) versions. GRIPP2-LF includes 34 items on aims, definitions, concepts and theory, methods, stages and nature of involvement, context, capture or measurement of impact, outcomes, economic assessment and reflections, and is suitable for studies where the main focus is PPI.  GRIPP2-SF includes 5 items on aims, methods, results, outcomes and critical perspective and is suitable for studies where PPI is a secondary focus. 

Conclusions: GRIPP2-LF and GRIPP2-SF represent the first international evidence-based, consensus-informed guidance for reporting patient and public involvement in research. Both versions of GRIPP2 aim to improve the quality, transparency and consistency of the international PPI evidence base, to ensure PPI practice is based on the best evidence. GRIPP 2 is co-published with Research Involvement and Engagement. 

Methods. Systematic literature searches of major databases (1980–2015) to identify published evidence of the application and quality of clearly defined measures. Evidence of measurement and practical properties, and the extent of active patient involvement, was sought. Study and PROM quality was assessed against recommended criteria.

Results. Seventy-one articles relating to 28 PROMs (Generic n = 12; Specific n = 16) were included. The SF-36 (v1) and EuroQoL EQ-5D 3L were the most widely evaluated measures with acceptable evidence of measurement properties, but limited evaluations of practical properties or relevance to this group. Evidence was mostly limited for the remaining measures. Hypothesized associations between variables were infrequently evaluated. Evidence of data quality, test–retest reliability, responsiveness, interpretation, acceptability and feasibility was also limited. Active patient involvement in PROM development or evaluation was not reported. There was limited evaluation of proxy completions.

Conclusions. The paucity of robust evaluations is disappointing and prevents clear recommendations for PROM-based assessment. Further research must urgently seek to identify which outcomes really matter to this group. Future PROM selection must be underpinned by research which focuses on methodological quality, including issues of acceptability, relevance, feasibility of application, and proxy completion, whilst seeking to actively incorporate the perspective of patients and their advocates.

Patient and public involvement (PPI) in research has expanded nationally and internationally over the last decade, and recently there has been significant attention given to understanding its impact on research. Less attention has been given to the impact of PPI on the people involved, yet it has been shown that the success of PPI in research can be reliant on the processes of engagement between these individuals and communities. This paper therefore critically explores the impact of PPI on service users, researchers and communities involved in health and social care research.

Data Sources

Searches were undertaken from 1995 to April 2012 in the electronic databases MEDLINE, EMBASE, PsycINFO, Cochrane library, CINAHL, HMIC and HELMIS. Searches were undertaken for grey literature using the databases InvoNet and NHS Evidence.

Study Selection

Studies were included if they included the impact of PPI on individual service users, researchers or communities under research. Studies were excluded if they were in a foreign language (unless they were deemed critical to the systematic review) or were in children and adolescent services.

Study Appraisal

Data were extracted using a narrative synthesis, and quality was assessed using the Critical Appraisal Skills Programme.

Main Results

Service users reported feeling empowered and valued, gaining confidence and life skills. Researchers developed a greater understanding and insight into their research area, gaining respect and a good rapport with the community. The community involved in research became more aware and knowledgeable about their condition. However, lack of preparation and training led some service users to feel unable to contribute to the research, while other service users and communities reported feeling overburdened with the work involved. Researchers reported difficulties in incorporating PPI in meaningful ways due to lack of money and time.

Conclusion

This is the first international systematic review to focus on the impact of PPI on the people involved in the process. The beneficial and challenging impacts reported highlight the importance of optimising the context and processes of involvement, so creating the potential for PPI to impact positively on the research itself.

Inclusion criteria All study types that reported the impact PPI had on the health and/or social care research study.
Main results. A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user-focused research objectives, development of user-relevant research questions, development of user-friendly information, questionnaires and interview schedules, more appropriate

recruitment strategies for studies, consumer-focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified.
Conclusion. This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade.