Parents' perceptions and experiences of physical activity in childhood cancer survivors in Singapore: a qualitative study.

Introduction: The survival rate for childhood cancer has increased with advances in medical care. Along with this comes the growing burden of long-term side effects of cancer treatment and cancer survivorship. Childhood cancer survivors are more likely to be sedentary and have a lower quality of life. Physical activity (PA) can promote health and well-being in childhood cancer survivors, but few studies have explored the role of parents of childhood cancer survivors (PCCS) in promoting PA. This qualitative study aims to explore the perceptions of PCCS in Singapore and the role they may have with regard to PA. Methods: Participants were recruited through a local charity via email, social media and posters. One-hour semi-structured interviews were conducted online with seven parents. With consent, the interviews were recorded, transcribed verbatim and analysed using thematic analysis. Results: Our study discussed thematically parents' accounts on (1) the barriers and enablers of PA and (2) the complications of cancer that potentially affect the levels of PA in childhood cancer survivors. Parents reported that childhood cancer negatively affects the quality of life and participation in PA. The determinants of participation in PA were multifaceted, and socioecological and health belief models were used to demonstrate how these factors were interlinked. Conclusion: Participation in PA is influenced at an individual, family, community and societal level. The improved understanding facilitated by this research can be used to shape paediatric cancer care practices in Singapore and guide institutional or national policy interventions.

Understanding patient barriers and facilitators to uptake of lung screening using low dose computed tomography: a mixed methods scoping review of the current literature.

BACKGROUND: Targeted lung cancer screening is effective in reducing mortality by upwards of twenty percent. However, screening is not universally available and uptake is variable and socially patterned. Understanding screening behaviour is integral to designing a service that serves its population and promotes equitable uptake. We sought to review the literature to identify barriers and facilitators to screening to inform the development of a pilot lung screening study in Scotland. METHODS: We used Arksey and O'Malley's scoping review methodology and PRISMA-ScR framework to identify relevant literature to meet the study aims. Qualitative, quantitative and mixed methods primary studies published between January 2000 and May 2021 were identified and reviewed by two reviewers for inclusion, using a list of search terms developed by the study team and adapted for chosen databases. RESULTS: Twenty-one articles met the final inclusion criteria. Articles were published between 2003 and 2021 and came from high income countries. Following data extraction and synthesis, findings were organised into four categories: Awareness of lung screening, Enthusiasm for lung screening, Barriers to lung screening, and Facilitators or ways of promoting uptake of lung screening. Awareness of lung screening was low while enthusiasm was high. Barriers to screening included fear of a cancer diagnosis, low perceived risk of lung cancer as well as practical barriers of cost, travel and time off work. Being health conscious, provider endorsement and seeking reassurance were all identified as facilitators of screening participation. CONCLUSIONS: Understanding patient reported barriers and facilitators to lung screening can help inform the implementation of future lung screening pilots and national lung screening programmes.

Optimizing the implementation of lung cancer screening in Scotland: Focus group participant perspectives in the LUNGSCOT study.

INTRODUCTION: Targeted lung cancer screening is effective in reducing lung cancer and all-cause mortality according to major trials in the United Kingdom and Europe. However, the best ways of implementing screening in local communities requires an understanding of the population the programme will serve. We undertook a study to explore the views of those potentially eligible for, and to identify potential barriers and facilitators to taking part in, lung screening, to inform the development of a feasibility study. METHODS: Men and women aged 45-70, living in urban and rural Scotland, and either self-reported people who smoke or who recently quit, were invited to take part in the study via research agency Taylor McKenzie. Eleven men and 14 women took part in three virtual focus groups exploring their views on lung screening. Focus group transcripts were transcribed and analysed using thematic analysis, assisted by QSR NVivo. FINDINGS: Three overarching themes were identified: (1) Knowledge, awareness and acceptability of lung screening, (2) Barriers and facilitators to screening and (3) Promoting screening and implementation ideas. Participants were largely supportive of lung screening in principle and described the importance of the early detection of cancer. Emotional and psychological concerns as well as system-level and practical issues were discussed as posing barriers and facilitators to lung screening. CONCLUSIONS: Understanding the views of people potentially eligible for a lung health check can usefully inform the development of a further study to test the feasibility and acceptability of lung screening in Scotland. PATIENT OR PUBLIC CONTRIBUTION: The LUNGSCOT study has convened a patient advisory group to advise on all aspects of study development and implementation. Patient representatives commented on the focus group study design, study materials and ethics application, and two representatives read the focus group transcripts.

Factors influencing adult carer support planning for unpaid caregiving at the end of life in Scotland: Qualitative insights from triangulated interviews and focus groups.

Caring for a relative or friend at the end of life can be rewarding but all-encompassing. These caregivers are often not identified, meaning their diverse needs remain unmet, and the lack of assessment, support and planning increases the likelihood of crisis and burnout. The Carers (Scotland) Act 2016 places responsibility on local authorities to implement such a plan, which will be fast-tracked for carers supporting someone at the end of life. Our research described the factors which might influence this planning, triangulating primary focus groups with 15 carers and secondary qualitative data from transcripts with 30 carers, all of whom who had looked after someone with a terminal illness. Analysis was iterative, and constant comparative analysis of the secondary data informed the primary focus groups. Three main themes were identified; 1. The importance of early identification as a carer to enable timely assessment and support. 2. Carers experience isolation and loneliness which limits opportunities for support. 3. Responding in a timely fashion to carer assessment and support is vital to avoid crises. This research confirms that identifying carers early in the illness trajectory, ideally at diagnosis, is vital to avoid carer burnout. Health and social care providers have a key role in identification and should ensure, where possible, that carer needs are dynamically assessed, supported and documented. Finally, caring does not end after death, it extends into bereavement. Thus, we need to consider system and cultural change to ensure the experiences and needs of carers are addressed and valued.

Patient and GP experiences of pathways to diagnosis of a second primary cancer: a qualitative study.

BACKGROUND: More people are surviving a first primary cancer and experiencing a second, different cancer. However, little is known about the diagnostic journeys of patients with second primary cancer (SPC). This study explores the views of patients and general practitioners (GPs) on their experiences of pathways to diagnosis of SPC, including the influence of a previous diagnosis of cancer on symptom appraisal, help-seeking and referral decisions. METHODS: Qualitative interviews with patients with a SPC diagnosis and case-linked GP interviews in a Scottish primary care setting. In-depth face to face or telephone interviews were conducted, underpinned by a social constructionist approach. Interviews were transcribed and Braun and Clarke's thematic analysis undertaken. Three analysts from the research team read transcripts and developed the coding framework using QSR NVivo version 10, with input from a fourth researcher. Themes were developed from refined codes and interpreted in the context of existing literature and theory. RESULTS: Interviews were conducted with 23 patients (aged 43-84 years) with a SPC diagnosis, and 7 GPs. Five patient themes were identified: Awareness of SPC, symptom appraisal and help-seeking, pathways to diagnosis, navigating the healthcare system, and impact of SPC. GPs interviews identified: experience and knowledge of SPC and referrals and decision-making. CONCLUSIONS: Insights into the pathway to diagnosis of SPC highlights the need for increased awareness of and vigilance for SPC among patients and healthcare providers (HCPs), and emotional support to manage the psychosocial burden.

Living with and beyond cancer with comorbid illness: a qualitative systematic review and evidence synthesis.

PURPOSE: To identify the qualitative evidence on the experience of cancer and comorbid illness from the perspective of patients, carers and health care professionals to identify psycho-social support needs, experience of health care, and to highlight areas where more research is needed. METHODS: A qualitative systematic review following PRISMA guidance. Relevant research databases were searched using an exhaustive list of search terms. Two reviewers independently screened titles and abstracts and discussed variations. Included articles were subject to quality appraisal before data extraction of article characteristics and findings. Thomas and Harden's thematic synthesis of extracted findings was undertaken. RESULTS: Thirty-one articles were included in the review, covering a range of cancer types and comorbid conditions; with varying time since cancer diagnosis and apparent severity of disease for both cancer and other conditions. The majority of studies were published after 2010 and in high income countries. Few studies focused exclusively on the experience of living with comorbid conditions alongside cancer; such that evidence was limited. Key themes identified included the interaction between cancer and comorbid conditions, symptom experience, illness identities and ageing, self-management and the role of primary and secondary care. CONCLUSIONS: In addition to a better understanding of the complex experience of cancer and comorbidity, the review will combine with research prioritisation work with consumers to inform an interview study with the defined patient group. IMPLICATIONS FOR CANCER SURVIVORS: Expanding this evidence base will help to illuminate developing models of cancer patient-centred follow-up care for the large proportion of patients with comorbid conditions.

Development of an evidence-based brief 'talking' intervention for non-responders to bowel screening for use in primary care: stakeholder interviews.

BACKGROUND: Bowel cancer is the third most common cause of cancer death worldwide. Bowel screening has been shown to reduce mortality and primary care interventions have been successful in increasing uptake of screening. Using evidence-based theory to inform the development of such interventions has been shown to increase their effectiveness. This study aimed to develop and refine a brief evidence-based intervention for eligible individuals whom have not responded to their last bowel screening invitation (non-responders), for opportunistic use by primary care providers during routine consultations. METHODS: The development of a brief intervention involving a conversation between primary care providers and non-responders was informed by a multi-faceted model comprising: research team workshop and meetings to draw on expertise; evidence from the literature regarding barriers to bowel screening and effective strategies to promote informed participation; relevant psychological theory, and intervention development and behaviour change guidance. Qualitative telephone interviews with 1) bowel screening stakeholders and 2) patient non-responders explored views regarding the acceptability of the intervention to help refine its content and process. RESULTS: The intervention provides a theory and evidence-based tool designed to be incorporated within current primary care practice. Bowel screening stakeholders were supportive of the intervention and recognised the importance of the role of primary care. Interviews highlighted the importance of brevity and simplicity to incorporate the intervention into routine clinical care. Non-responders similarly found the intervention acceptable, valuing a holistic approach to their care. Moreover, they expected their primary care provider to encourage participation. CONCLUSIONS: A theory-based brief conversation for use in a primary care consultation was acceptable to bowel screening stakeholders and potential recipients, reflecting a health promoting primary care ethos. Findings indicate that it is appropriate to test the intervention in primary care in a feasibility study.

Pathways to diagnosis of a second primary cancer: protocol for a mixed-methods systematic review.

INTRODUCTION: As cancer survivors continue to live longer, the incidence of second primary cancers (SPCs) will also rise. Relatively little is understood about the diagnostic pathway for SPCs, how people appraise, interpret symptoms and seek help for a second different cancer and the experiences (including challenges) of healthcare providers relating to SPCs. This study aims to systematically appraise and synthesise the literature on the pathways to diagnosis of an SPC and the associated patient and healthcare provider experiences. METHODS: The approach taken includes systematic searches of published and unpublished literature without any date or language restrictions. MEDLINE, Embase, CAB Abstracts, MEDLINE In-Process and non-indexed citations, PsycINFO, Epub Ahead of Print, In-Process and other non-indexed citations, Ovid MEDLINE Daily, CINAHL, ASSIA, Sociological Abstracts, Web of Science, PROSPERO and grey literature will be searched to identify observational, systematic reviews, mixed methods and qualitative studies of interest. Titles, abstracts and full texts will be screened against the inclusion-exclusion criteria by at least two reviewers independently. Relevant outcomes of interest and study and population characteristics will be extracted. Synthesis will be used guided by the Pathways to Treatment model and the Olesen model of time intervals. ETHICS AND DISSEMINATION: Ethical approval is not required. This systematic review will provide a deeper understanding of the complex and heterogeneous diagnostic pathways of SPCs, while identifying common themes across the diagnostic interval, routes to diagnosis and patient and healthcare provider experiences. These findings will help provide a nuanced picture of the diagnostic pathway for SPCs that may inform policy and consistent practice. In particular, approaches to early diagnosis for an SPC; including the timing and reasons behind the decision by the patient to seek care,the challenges faced by healthcare providers, and in the development of future interventions to reduce the delay in patient time-to-presentation. PROSPERO REGISTRATION NUMBER: CRD42016051692.

Is an opportunistic primary care-based intervention for non-responders to bowel screening feasible and acceptable? A mixed-methods feasibility study in Scotland.

OBJECTIVES: We aimed to test whether a brief, opportunistic intervention in general practice was a feasible and acceptable way to engage with bowel screening non-responders. DESIGN: This was a feasibility study testing an intervention which comprised a brief conversation during routine consultation, provision of a patient leaflet and instructions to request a replacement faecal occult blood test kit. A mixed-methods approach to evaluation was adopted. Data were collected from proformas completed after each intervention, from the Bowel Screening Centre database and from questionnaires. Semi-structured interviews were carried out. We used descriptive statistics, content and framework analysis to determine intervention feasibility and acceptability. PARTICIPANTS: Bowel screening non-responders (as defined by the Scottish Bowel Screening Centre) and primary care professionals working in five general practices in Lothian, Scotland. PRIMARY AND SECONDARY OUTCOME MEASURES: Several predefined feasibility parameters were assessed, including numbers of patients engaging in conversation, requesting a replacement kit and returning it, and willingness of primary care professionals to deliver the intervention. RESULTS: The intervention was offered to 258 patients in five general practices: 220 (87.0%) engaged with the intervention, 60 (23.3%) requested a new kit, 22 (8.5%) kits were completed and returned. Interviews and questionnaires suggest that the intervention was feasible, acceptable and consistent with an existing health prevention agenda. Reported challenges referred to work-related pressures, time constraints and practice priorities. CONCLUSIONS: This intervention was acceptable and resulted in a modest increase in non-responders participating in bowel screening, although outlined challenges may affect sustained implementation. The strategy is also aligned with the increasing role of primary care in promoting bowel screening.

Experience of living with cancer and comorbid illness: protocol for a qualitative systematic review.

INTRODUCTION: There are an increasing number of people living with and beyond cancer, whose experience is further complicated by additional long-term health conditions in the context of an ageing population. The supportive care needs of this growing patient group should be recognised and addressed. There is a need to explore the experience of living with cancer and comorbid illness in order to develop optimal models of patient-centred care. This protocol describes a systematic review that aims to identify the qualitative evidence relating to the experience of cancer and comorbid illness for patients, informal carers and professionals, and to highlight areas where more research is needed. METHODS AND ANALYSIS: A systematic review following PRISMA guidance will be undertaken. Medline, Embase, CINAHL, PsycINFO, ASSIA, Sociological Abstracts, Web of Science, SCOPUS, OpenGrey and ProQuest Dissertations and Theses Global databases will be systematically searched for articles relevant to patient, carer and professional experiences. Two independent reviewers will screen articles for inclusion and evaluate them according to the Critical Appraisal Skills Programme tool. Extracted data will be combined using recognised methods of qualitative synthesis to offer new insights into the topic area and for a patient-centred model of care. ETHICS AND DISSEMINATION: The review does not require formal ethical review as no direct patient contact or patient identifiable data is used. Conduct of the review has been approved internally by the University of Edinburgh Centre for Population Health Sciences Ethics Review Committee. Results of the review will be published in a generalist peer-reviewed journal and presented at a relevant conference in addition to informing subsequent empirical work by the authors on this topic area.

Member Checking: A Tool to Enhance Trustworthiness or Merely a Nod to Validation?

The trustworthiness of results is the bedrock of high quality qualitative research. Member checking, also known as participant or respondent validation, is a technique for exploring the credibility of results. Data or results are returned to participants to check for accuracy and resonance with their experiences. Member checking is often mentioned as one in a list of validation techniques. This simplistic reporting might not acknowledge the value of using the method, nor its juxtaposition with the interpretative stance of qualitative research. In this commentary, we critique how member checking has been used in published research, before describing and evaluating an innovative in-depth member checking technique, Synthesized Member Checking. The method was used in a study with patients diagnosed with melanoma. Synthesized Member Checking addresses the co-constructed nature of knowledge by providing participants with the opportunity to engage with, and add to, interview and interpreted data, several months after their semi-structured interview.

Different Experiences and Goals in Different Advanced Diseases: Comparing Serial Interviews With Patients With Cancer, Organ Failure, or Frailty and Their Family and Professional Carers.

CONTEXT: Quality care for people living with life-limiting illnesses is a global priority. A detailed understanding of the varied experiences of people living and dying with different conditions and their family and professional caregivers should help policymakers and clinicians design and deliver more appropriate and person-centered care. OBJECTIVES: To understand how patients with different advanced conditions and their family and professional caregivers perceive their deteriorating health and the services they need. METHODS: We used a narrative framework to synthesize eight methodologically comparable, longitudinal, and multiperspective interview studies. We compared the end-of-life experiences of people dying from cancer (lung, glioma, and colorectal cancer), organ failure (heart failure, chronic obstructive pulmonary disease, and liver failure), and physical frailty and those of their family and professional caregivers in socioeconomically and ethnically diverse populations in Scotland. RESULTS: The data set comprised 828 in-depth interviews with 156 patients, 114 family caregivers, and 170 health professionals. Narratives about cancer typically had a clear beginning, middle, and an anticipated end. Cancer patients gave a well-rehearsed account of their illness, hoping for recovery alongside fear of dying. In contrast, people with organ failure and their family caregivers struggled to pinpoint when their illness began, or to speak openly about death, hoping instead to avoid further deterioration. Frail older people tended to be frustrated by their progressive loss of independence, fearing dementia or nursing home admission more than dying. CONCLUSION: These contrasting illness narratives affect and shape the experiences, thoughts, and fears of patients and their carers in the last months of life. Palliative care offered by generalists or specialists should be provided more flexibly and equitably, responding to the varied concerns and needs of people with different advanced conditions.

'This isn't what mine looked like': a qualitative study of symptom appraisal and help seeking in people recently diagnosed with melanoma.

OBJECTIVE: To explore symptom appraisal and help-seeking decisions among patients recently diagnosed with melanomas, and to compare experiences of people with 'thinner' (<1 mm) and 'thicker' (>2 mm) melanomas, as thickness at diagnosis is an important prognostic feature. METHODS: In-depth interviews with patients within 10 weeks of melanoma diagnosis explored the factors impacting on their pathways to diagnosis. Framework analysis, underpinned by the Model of Pathways to Treatment, was used to explore the data with particular focus on patients' beliefs and experiences, disease factors, and healthcare professional (HCP) influences. RESULTS: 63 patients were interviewed (29-93 years, 31 women, 30 thicker melanomas). All described their skin changes using rich lay vocabulary. Many included unassuming features such as 'just a little spot' as well as common features of changes in size, colour and shape. There appeared to be subtly different patterns of symptoms: descriptions of vertical growth, bleeding, oozing and itch were features of thicker melanomas irrespective of pathological type. Appraisal was influenced by explanations such as normal life changes, prior beliefs and whether skin changes matched known melanoma descriptions. Most decisions to seek help were triggered by common factors such as advice from family and friends. 11 patients reported previous reassurance about their skin changes by a HCP, with little guidance on monitoring change or when it would be appropriate to re-consult. CONCLUSIONS: Patients diagnosed with both thinner and thicker melanomas often did not initially recognise or interpret their skin changes as warning signs or prompts to seek timely medical attention. The findings provide guidance for melanoma awareness campaigns on more appropriate images, helpful descriptive language and the need to stress the often apparently innocuous nature of potentially serious skin changes. The importance of appropriate advice, monitoring and safety-netting procedures by HCPs for people presenting with skin changes is also highlighted.

Adjustment and support needs of glioma patients and their relatives: serial interviews.

OBJECTIVE: To understand factors influencing the process of adjustment to a diagnosis of glioma. METHODS: Twenty-six patients and 23 relatives took part in 80 in-depth qualitative interviews conducted at five key stages: before formal diagnosis, at start of treatment, on completion of treatment, 6 months post treatment, and post bereavement. RESULTS: High levels of distress were reported, particularly preceding and following diagnosis. Many participants described lack of specific information in the early part of their illness and a lack of clarity about what was wrong and what was going to happen next. They often desired more procedural information, as well as information about their condition and treatments available, although there was variation in the timing of when people were ready to hear this. Receiving reassurance and support was essential to patients and their relatives to help them come to terms with their illness. This need was particularly acute during the early phase of the illness when distress and uncertainty were at a peak and lessened over time as people adjusted to their illness. CONCLUSIONS: Offering suitable information about what to expect early and frequently in a supportive way is much appreciated by patients. There is an important balance between ensuring that patients and their families are fully informed and fostering adaptive coping that allows for hope.

Are UK primary care teams formally identifying patients for palliative care before they die?

BACKGROUND: The palliative care approach has the potential to improve care for patients with progressive life-threatening illnesses from the time of diagnosis. Policy and clinical directives in the UK advocate early identification. AIM: To determine the extent to which practices identify patients for palliative care, including factors influencing early identification and possible effects on place of death. DESIGN AND SETTING: Qualitative and quantitative data were collected from six general practices from three Scottish NHS boards and analysed. METHOD: Records of patients who had died in the previous 6 months were analysed and interviews with practice staff (n = 21) and with patients currently on the practice palliative care register and bereaved relatives (n = 14) were conducted. In addition, a practice meeting was observed. RESULTS: In total, 29% of patients who died were recorded as being on the practice palliative care register before death. Two-thirds of patients with cancer were recorded on the register, but for those with non-malignant conditions only around 20% had any palliative care documented. This was a result of GPs not finding the current guidelines useful and being reluctant to discuss palliative care overtly with patients early in their illness. Palliative care services and documentation were geared towards patients with cancer. More district nurses than GPs saw the benefits of inclusion on the palliative care register. Only 25% of patients on the register died in hospital. CONCLUSION: Most patients with advanced progressive illnesses, especially those with non-malignant disease, are not being formally identified for a palliative care approach before they die. Those identified are more likely to benefit from coordinated care and may be more likely to die at home.

Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study.

BACKGROUND: Cerebral glioma has a devastating impact on cognitive, physical, social, psychological and spiritual well-being. We sought to understand the multidimensional experience of patients with this form of cancer as they progressed from receiving a diagnosis to the terminal phase of the disease. METHODS: We recruited patients with a suspected brain tumour from a tertiary referral centre in the United Kingdom. We interviewed patients and their caregivers at key stages of the illness: before receiving a formal diagnosis, at the start of initial treatment, after initial treatment was completed and at six months' follow-up; caregivers were also interviewed postbereavement. We interviewed the patients' general practitioners once, after treatment had been completed. We transcribed the interviews and analyzed them thematically using the constant comparative method of a grounded theory approach. RESULTS: We conducted in-depth interviews with 26 patients, 23 of their relatives and 19 general practitioners. We saw evidence of physical, social, psychological and existential distress even before a diagnosis was confirmed. Social decline followed a similar trajectory to that of physical decline, whereas psychological and existential distress were typically acute around diagnosis and again after initial treatment. Each patient's individual course varied according to other factors including the availability of support and individual and family resources (e.g., personal resilience and emotional support). INTERPRETATION: There are practical ways that clinicians can care for patients with glioma and their caregivers, starting from before a diagnosis is confirmed. Understanding the trajectories of physical, social, psychological and existential well-being for these patients allows health care professionals to predict their patients' likely needs so they can provide appropriate support and sensitive and effective communication.

Consent for childhood cancer tissue banking in the UK: the effect of the Human Tissue Act 2004.

The obtainment, storage, and use of human tissue taken from children for research purposes is an area that is notable for its complexity and legal uncertainties. In the UK, the controversy surrounding organ retention prompted radical legislative change in the form of the Human Tissue Act 2004, which came into force from September, 2006. This Review paper explores the effect of the Human Tissue Act on consent, in the context of childhood tissue banking. We take as our case study the UK Children's Cancer Study Group tumour bank. Although the Human Tissue Act provides a new, detailed statutory framework, it does not, by itself, resolve all the relevant issues in this area. Researchers and clinicians must, therefore, continue to work alongside the existing principles of common law relating to this issue. Consent for the removal of tumour tissue during a surgical procedure should be distinguished from consent for the retention of the tissue for future use in research or for other specified uses. Consent to surgery is regulated by the same common law procedures used for consent to treatment. By contrast, the requirements for consent to storage and specified uses of samples are predominantly, but not exclusively, regulated by the Human Tissue Act. Although the Human Tissue Act might, at first, seem to promote clarity, the new legislative provisions and resultant Codes of Practice on consent could possibly lead tumour banks to reassess the nature and process of obtaining consent for the use of samples from children in research.