Developing a framework of concerns from people living with frailty, for the Measure Yourself Concerns and Wellbeing (MYCaW) person-centred outcome measure.

INTRODUCTION: Measure Yourself Concerns and Wellbeing is a validated person-centred outcome measure, piloted as a core monitoring tool to understand what matters to people living with frailty in Gloucestershire. This paper describes the acceptability of MYCaW used in this setting, and the development of a framework for analysing personalised concerns from people living with frailty. METHODS: MYCaW was implemented in the Complex Care at Home service and South Cotswold Frailty Service from November 2020 onwards. MYCaW was completed at the person's first meeting with a community matron and then 3 months later. Nineteen staff completed an anonymous survey to provide feedback on the acceptability of the tool. A framework of concerns bespoke to people living with frailty was created via iterative rounds of independent coding of 989 concerns from 526 people. The inter-rater reliability of the framework was determined by using the Cronbach alpha test. RESULTS: MYCaW was simple to use and helped health professionals' discussions to be patient focused. A pictorial scale accompanying the Numerical Rating Scale was developed and tested to help people engage with scoring their concerns and well-being more easily. A framework of concerns from people living with frailty was produced with five main supercategories: Mental and Emotional Concerns; Physical Concerns; Healthcare and Service Provision Concerns, Concerns with General Health and Well-being and Practical Concerns. Inter-rater reliability was kappa=0.905. CONCLUSIONS: MYCaW was acceptable as a core monitoring tool for people living with frailty and enabled a systematic approach to opening 'What Matters to Me' conversations. The personalised data generated valuable insights into how the frailty services positively impacted the outcomes for people living with frailty. The coding framework demonstrated a wide range of concerns-many linked to inequalities and not identified on existing outcome measures recommended for people living with frailty.

Barriers and facilitators to integrated cancer care between primary and secondary care: a scoping review.

PURPOSE: This scoping review identifies and characterises reported barriers and facilitators to providing integrated cancer care reported in the international literature, and develops recommendations for clinical practice. METHODS: This scoping review included literature published between 2009 and 2022 and describes the delivery of integrated cancer care between primary and secondary care sectors. Searches were conducted of an online database Ovid Medline and grey literature. RESULTS: The review included thirty-two papers. Barriers and facilitators to integrated cancer care were identified in three core areas: (1) at an individual user level around patient-healthcare professional interactions, (2) at an organisational level, and (3) at a healthcare system level. The review findings identified a need for further training for primary care professionals on cancer care, clarity in the delineation of primary care and oncologist roles (i.e. who does what), effective communication and engagement between primary and secondary care, and the provision of protocols and guidelines for follow-up care in cancer. CONCLUSIONS: Information sharing and communication between primary and secondary care must improve to meet the increasing demand for support for people living with and beyond cancer. Delivering integrated pathways between primary and secondary care will yield improvements in patient outcomes and health economic costs.

The Development of a Communication Tool to Aid Parent-Centered Communication between Parents and Healthcare Professionals: A Quality Improvement Project.

Good communication is central to good healthcare. As a result of poor communication between parents and healthcare professionals (HCPs) in clinical settings, this study aimed to address this problem by developing a communication tool to empower parents and act as a prompt for HCPs to talk about the child's care and gather information at the point of admission to hospital about what is important to families, therefore supporting patient-centered communication. A design thinking process was used to develop a physical copy of Chloe's card and evaluate its use. Design thinking is a problem-solving approach, which uses an empathetic lens to integrate viewpoints of different stakeholders throughout the process of creating solutions. Design thinking involves five processes: (1) empathise-including a literature review and data synthesis, (2) define-by completing semi-structured interviews with parents about their experience of communication and HCPs perceptions of parent's experience of communication, (3) ideate-iterate the design of Chloe's card with parents and HCPs, (4) prototype-develop the design of Chloe's card, and (5) test-pilot test in clinical practice. Results from this initial study suggest that a small hand-held card, with emoticons and a place to write concerns, was acceptable to parents and feasible to use in clinical practice. Parents do not always feel heard by HCPs and a tool such as Chloe's card may help facilitate sharing of information about matters important to them and their child. However, some HCPs felt the need for a communication tool undermined their clinical skills. Feedback from HCP participants suggests that the idea of Chloe's card was acceptable and perceived as potentially being useful in clinical practice. Further work is required, as part of a larger study, to further refine this communication tool, identify those parents who would benefit most from Chloe's card, as well as to further refine the HCP process prior to implementing it into clinical settings. It was noted future iterations would benefit from a digital version linked with a child's electronic record, as well as multi-language versions and information for parents.

COVID-19- Experiences and support needs of children and young people with Hydrocephalus and parents in the United Kingdom.

PURPOSE: Little is known about the impact of COVID-19 on children and young people (CYP) with hydrocephalus and their families. This study explored the experiences and support needs of CYP with hydrocephalus and parents who have a child with hydrocephalus during the COVID-19 pandemic. METHODS: CYP with hydrocephalus and parents of CYP with hydrocephalus in the United Kingdom completed an online survey with open and closed questions exploring experiences, information, support needs and decision making processes. Qualitative thematic content analysis and descriptive quantitative analyses were undertaken. RESULTS: CYP aged 12-32 years (n=25) and parents of CYP aged 0-20 years (n=69) responded. Parents (63.5%) and CYP (40.9%) worried about the virus, and both were vigilant for virus symptoms (86.5% and 57.1%). Parents (71.2%) and CYP (59.1%) worried about their child/feeling more isolated during the virus outbreak. Parents felt concerned about having to take their child to hospital with a suspected shunt problem during the virus outbreak (64.0%). Qualitative findings reported the following themes: (1) Healthcare and treatment provision: delays and challenges to access and availability of care (2) Impact of COVID-19/lockdown on daily lives and routines, and (3) Provision of information and support for parents and CYP with hydrocephalus. CONCLUSION: The impact of COVID-19 and national measures to control the spread of the virus- no contact with anyone outside the household significantly impacted the daily lives and routines of CYP with hydrocephalus and parents. Social engagements were missed, families faced challenges to their work life, education and access to health care and support, which subsequently contributed negatively to their mental wellbeing. CYP and parents highlighted a need for clear, timely and targeted information to address their concerns.

Experiences and support needs of parents/caregivers of children with cancer through the COVID-19 pandemic in the UK: a longitudinal study.

OBJECTIVE: To explore the experiences, information and support needs of parents/caregivers of children with cancer and how these changed as the COVID-19 pandemic evolved. DESIGN: Online surveys containing closed and free-text questions on experiences, information and support needs were completed at four time points (between April 2020 and October 2021) during the COVID-19 pandemic. Descriptive statistics of closed items and content analysis of qualitative data were conducted. SETTING: Online. PARTICIPANTS: Parents/caregivers of children with cancer. RESULTS: 335 parents/caregivers completed the survey over four time points. Findings revealed that parents'/caregivers' worry about the virus and vigilance about their child's virus symptoms decreased over time. Parents reporting the need for support on how to reduce their worries and/or family members during the virus outbreak were low, however parents reported a slight increase in need for support at T3 when schools reopened. Qualitative findings reported the following themes: (1) Psychological well-being of parents/caregivers, (2) Changing perceptions of risks/priorities, (3) Adjusting to COVID-19: Living with continued caution, (4) Healthcare and treatment provision, (5) Information seeking and needs during COVID-19. CONCLUSIONS: The COVID-19 pandemic disrupted people's lives and routines in relation to access to support, finances, education and social lives, leading to psychological distress. Parents highlighted the need for timely, up-to-date and personalised information in relation to COVID-19 and their child with cancer. Further consideration of the development of technology-based health solutions may provide an efficient and safe way to connect with and support parent/caregivers.

Patients' and healthcare professionals' views on a pre- and post-operative rehabilitation programme (SOLACE) for lung cancer: A qualitative study.

AIMS AND OBJECTIVES: To explore patients' and healthcare professionals' views and experiences of a pre- and post-operative rehabilitation intervention (SOLACE), for patients undergoing surgery for early-stage lung cancer. BACKGROUND: Considerable post-operative complications can occur after surgery. A specialist lung cancer service (SOLACE) was developed to optimise health and fitness levels prior to and following lung cancer resections, as well as reducing morbidity and mortality, and improving the physical and psychological well-being of patients. DESIGN: The design was an exploratory, descriptive qualitative interview study. METHODS: Seventeen lung cancer patients and eight healthcare professionals were recruited from a large teaching hospital in South England. Data were collected through semi-structured telephone and face-to-face interviews. Transcribed interview data were analysed thematically. The COREQ checklist was used to report on the study process. RESULTS: The SOLACE service was positively perceived by patients and healthcare professionals. Patients valued the provision of tailored support/advice and peer support and reported benefits to their health and well-being. Barriers to patient uptake of the classes included time constraints, motivation and access for patients who lived at a distance. CONCLUSIONS: There is benefit in providing a personalised approach through a pre- and post-operative rehabilitation service for lung cancer patients. Virtual support may address equality of access to service for those who live at a distance from the hospital. RELEVANCE TO CLINICAL PRACTICE: Introduction of a pre- and post-operative rehabilitation service provided by specialist peri-operative rehabilitation nurses and practitioners can yield positive outcomes for patients undergoing surgical treatment of early-stage lung cancer. Engagement of key healthcare professionals, consideration of virtual follow-up services and making patients aware of services could maximise patient uptake. Further consideration is needed of the best way to promote patient self-management and long-term continuation of patient rehabilitation in the community.

COVID-19: Impact, experiences, and support needs of children and young adults with cystic fibrosis and parents.

BACKGROUND: Little is known about the impact of COVID-19 and the United Kingdom's (UK) national shielding advice on people with cystic fibrosis (CF) and their families. This study explored the experiences and support needs of children and young adults (CYAs) with CF, and parents who have a child with CF, during the COVID-19 pandemic. METHODS: CYAs with CF and parents of CYAs with CF completed a UK wide online survey with open and closed questions exploring experiences, information and support needs and decision-making processes. Qualitative thematic content analysis and descriptive quantitative analyses were undertaken. RESULTS: CYAs aged 10-30 years (n = 99) and parents of CYAs aged 0-34 years (n = 145) responded. Parents (72.7%) and CYAs (50.0%) worried about the virus, and both were vigilant for virus symptoms (82.7% and 79.7%). Over three-quarters of CYAs were worried about their own health if they caught the virus. CYAs worried about feeling more isolated during the virus (64.9%). Qualitative findings reported the following themes: (1) Disruption-caused by isolation, (2) impact on psychological wellbeing, (3) safety of shielding, and (4) healthcare and treatment provision-changes to care, access and support. CONCLUSIONS: The impact of COVID-19 and UK shielding advice to have no contact with anyone outside the household caused disruption to the lives and routines of individuals in relation to work, education, social lives, relationships, CF management routines and support. Parents and CYAs highlighted the need for clear, up-to-date and tailored advice on individualized risks and shielding.

Using the Framework Method for the Analysis of Qualitative Dyadic Data in Health Research.

There are an increasing number of qualitative studies which focus on the dyad (couples, families, caregivers-patients, health care professionals-patients). However, there is limited literature regarding qualitative methodology for dyadic analysis when members of the couple have been interviewed separately. The aim of this article is to share the knowledge we gained from undertaking a novel approach to dyadic analysis. We used an adapted version of the Framework method on data gathered in a study exploring the impact of prostate cancer on younger men and their partners. In this article, we examine and reflect on the challenges of this type of analysis and describe how we analyzed the interview data from a dyadic point of view, to share what we learned in the process.

The experiences and needs of couples affected by prostate cancer aged 65 and under: a qualitative study.

PURPOSE: Prostate Cancer (PCa) is often considered to be an illness affecting older men, however the prevalence in younger men (<=65 years) is rising. Diagnosis and treatment for PCa can have a significant impact on the lives of both the man with PCa and his partner. This study explored the experiences and needs of younger men and their partners affected by PCa. The findings will be used to inform service provision and develop interventions appropriate to need. METHODS: Participants were recruited from respondents to a national PROMS study (Life After Prostate Cancer Diagnosis (LAPCD), who indicated on completed questionnaires their willingness to be interviewed. Semi-structured telephone interviews were conducted with twenty-eight couples, separately (56 participants). Data were analysed using the Framework Method. RESULTS: Following the diagnosis of PCa, couples' experienced changes in their intimate relationships, parental/familial roles, work and finances, and social connections and activities. Couples adopted a range of strategies and behaviours to help their adjustment to PCa, such as communicating with each other, distancing, distraction, and adopting a positive mindset towards PCa. This, in turn, influenced how their identity as a couple evolved. CONCLUSIONS: Following a diagnosis of PCa, the identity of couples are continually evolving. It is important that these couples are provided with the appropriate information, support and resources to help them transition along the cancer pathway. IMPLICATIONS FOR CANCER SURVIVORS: Key areas of support identified for younger couples include: 1) couple focused support programme to foster relationship strategies/behaviours that facilitate couple adjustment; 2) age-specific support, e.g. 'buddying systems' connecting younger couples affected by PCa and providing them with tailored information (written/online/app).

Prevalence and predictors of poor sexual well-being over 5 years following treatment for colorectal cancer: results from the ColoREctal Wellbeing (CREW) prospective longitudinal study.

OBJECTIVES: To describe prevalence and predictors of poor sexual well-being for men and women over 5 years following treatment for colorectal cancer. DESIGN: Prospective longitudinal study, from presurgery to 5 years postsurgery, with eight assessment points. Logistic regression models predicted sexual well-being from presurgery to 24 months and 24 months to 60 months; time-adjusted then fully adjusted models were constructed at each stage. SETTING: Twenty-nine hospitals in the UK. PARTICIPANTS: Patients with Dukes' stage A-C, treated with curative intent, aged ≥18 years and able to complete questionnaires were eligible. OUTCOME MEASURES: The dependent variable was the Quality of Life in Adult Cancer Survivors sexual function score. Independent variables included sociodemographic, clinical and psychosocial characteristics. RESULTS: Seven hundred and ninety participants provided a sexual well-being score for at least one time point. Thirty-seven per cent of men and 14% of women reported poor sexual well-being at 5 years. Baseline predictors for men at 24 months included having a stoma (OR 1.5, 95% CI 1.02 to 2.20) and high levels of depression (OR 2.69/2.01, 95% CI 1.68 to 4.32/1.12 to 3.61); men with high self-efficacy (OR confident 0.33/0.48, 95% CI 0.18 to 0.61/0.24 to 1.00; very confident 0.25/0.42, 95% CI 0.13 to 0.49/0.19 to 0.94) and social support (OR 0.52/0.56, 95% CI 0.33 to 0.81/0.35 to 0.91) were less likely to report poor sexual well-being. Predictors at 60 months included having a stoma (OR 2.30/2.67, 95% CI 1.22 to 4.34/1.11 to 6.40) and high levels of depression (OR 5.61/2.58, 95% CI 2.58 to 12.21/0.81 to 8.25); men with high self-efficacy (very confident 0.14, 95% CI 0.047 to 0.44), full social support (OR 0.26; 95% CI 0.13 to 0.53) and higher quality of life (OR 0.97, 95% CI 0.95 to 0.98) were less likely to report poor sexual well-being. It was not possible to construct models for women due to low numbers reporting poor sexual well-being. CONCLUSIONS: Several psychosocial variables were identified as predictors of poor sexual well-being among men. Interventions targeting low self-efficacy may be helpful. More research is needed to understand women's sexual well-being.

Adjustment strategies amongst black African and black Caribbean men following treatment for prostate cancer: Findings from the Life After Prostate Cancer Diagnosis (LAPCD) study.

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 and 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 men's 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.

The challenges on the family unit faced by younger couples affected by prostate cancer: A qualitative study.

OBJECTIVE: The number of younger men being diagnosed with prostate cancer (PCa; aged ≤65) is increasing. It is recognised that PCa and treatment side effects can have a significant impact on quality of life. This study explores the challenges faced by younger couples affected by PCa with dependent children (under 18 years) or young adults (18-29 years) in their families. METHODS: Twenty-three men with PCa and their partners were interviewed (separately) by telephone. Participants were recruited from respondents to the life after prostate cancer diagnosis (LAPCD) national survey. Men were 3 to 5 years postdiagnosis, and following a range of treatment pathways. Data were analysed using the Framework Approach. RESULTS: Younger couples affected by PCa felt challenged by issues relating to their parental role and the dynamics within the family. Five main themes emerged: difficult conversations about PCa diagnosis; parental perceptions of the impact of diagnosis on children; parental responses to the impact of PCa on the family; shielding, coping, and normalising strategies; and levels of support. CONCLUSIONS: A diagnosis of PCa can cause significant disruption to the family unit and the quality of life of its members. Support programmes offering guidance to children/young adults affected by PCa in their family, and addressing the concerns of parents may help families to better adapt. Encouraging clinical professionals to initiate conversations with younger couples about their children may be a way forward in directing appropriate support. Further research is needed to elucidate appropriate, effective supportive interventions.

Development of Measure Yourself Concerns and Wellbeing for informal caregivers of people with cancer-a multicentred study.

PURPOSE: Measure Yourself Concerns and Wellbeing (MYCaW) is a validated person-centred measure of the concerns and wellbeing of people affected by cancer. Research suggests that the concerns of informal caregivers (ICs) are as complex and severely rated as people with cancer, yet MYCaW has only been used to represent cancer patients' concerns and wellbeing. This paper reports on the development of a new qualitative coding framework for MYCaW to capture the concerns of ICs, to better understand the needs of this group. METHODS: This multicentred study involved collection of data from ICs receiving support from two UK cancer support charities (Penny Brohn UK and Cavendish Cancer Care). Qualitative codes were developed through a detailed thematic analysis of ICs' stated concerns. RESULTS: Thematic analysis of IC questionnaire data identified key themes which were translated into a coding framework with two overarching sections; (1) 'informal caregiver concerns for self' and (2) 'informal caregiver concerns for the person with cancer'. Supercategories with specific accompanying codes were developed for each section. Two further rounds of framework testing across different cohorts allowed for iterative development and refinement of the framework content. CONCLUSIONS: This is the first person-centred tool specifically designed for capturing IC's concerns through their own words. This coding framework will allow for IC data to be analysed using a rigorous and reproducible method, and therefore reported in a standardised way. This may also be of interest to those exploring the needs of ICs of people in other situations.

Prostate cancer and the impact on couples: a qualitative metasynthesis.

PURPOSE: To review and interpret existing qualitative literature on the experiences of couples affected by prostate cancer (PCa). METHODS: A metasynthesis was carried out which included a systematic search of seven databases between 2000 and 2016. A modified version of Noblit and Hare's meta-ethnographic approach was used to synthesise qualitative study findings and inform overarching interpretations. RESULTS: Thirty-seven studies focusing on the experiences of men with PCa and their partner dyad were included producing seven interconnected constructs. The construct accepting change vs seeking continuity reflects the range of ways individuals within the dyad and couples adjust to the diagnosis. Cultivating connection vs disengaging illustrates how couples seek to manage the impact of PCa and its treatment on their relationship, which may lead to a threatened identity, including sexual insecurities. Shielding me, you and us reflects the ways in which couples strive to protect themselves as individuals and/or each other from the impact of PCa. Being a partner and its challenges highlights the responsibilities partners assume and the impact of their supporting role. Yet, partners sometimes report feeling unsupported and side-lined both by the man they are caring for and by healthcare professionals. Couples often recognise the value of facing PCa together. CONCLUSIONS: PCa affects both members of the dyad as individuals, as well as the couple's relationship. How best to support couples and how to overcome difficulties in expressing their concerns to one another requires further consideration. Healthcare professionals should endeavour to employ a couple-focused approach where appropriate.