Abstract Background Patient and public engagement is becoming recognised as important to strengthen cancer research. This means that research is conducted with, rather than to, about, or for, members of the public. When done in a non-tokenistic way, engagement has the potential to improve the quality and relevance of research findings. However, there is limited methodological guidance and understanding of how to deliver meaningful engagement at every stage of the research process. This study aims to address these gaps by exploring the experiences of cancer researchers and members of the public engaged in cancer research in the United States. Methods Qualitative interview design involving semi-structured interviews with cancer researchers (n=15) and members of the public engaged in cancer research (n=15), exploring how engagement is delivered, barriers, facilitators and its impact. Data were analysed using reflexive thematic analysis, supported by NVivo 20. A community advisory board comprising four lived experience experts who were previously involved in cancer research served as co-researchers. They come from diverse communities and have lived experience of cancer. Their contribution was throughout the entire study process, from design (including topic guides development) through data analysis and reporting. Results The findings capture the experiences of researchers and members of the public around patient and public engagement in cancer research. They identify the enablers (e.g., institutional support) and barriers (e.g., financial) to public engagement in cancer research, capture existing strategies to mitigate these barriers, and examine the impact of engagement activities on the research project, researchers and members of the public. This study offers new insights into establishing and delivering effective engagement activities. First, it highlights the importance of identifying suitable community representatives who can advise researchers on selecting appropriate members for the advisory boards. Second, it describes how the public can contribute to research throughout the engagement process, and how researchers can support them to ensure everyone has confidence to contribute fully. Third, it suggests options for public engagement when financial resources are limited. Conclusion Genuine patient and public engagement in cancer research is still evolving in the United States, with various approaches currently in use; however, there is a growing consensus that researchers should adapt their work to include public voices. This study will provide further understanding and guidance for cancer researchers on how to involve patients and the public in cancer research in an inclusive and impactful way. Citation Format: Piotr Teodorowski, Joi Miner, Jonathan B. Green, Daniel G. Garza, Marcus Arana, Beth Maclin, Edward Duncan, Jonine Figueroa, Liz Forbat, Sarah S. Jackson. Surprising myself of how much more confident I got in being able to share my voice: A qualitative study exploring patient and public engagement in cancer research [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2026; Part 1 (Regular Abstracts); 2026 Apr 17-22; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2026;86(7 Suppl):Abstract nr 6357.
BACKGROUND:Public engagement has the potential to make research more impactful, and it has increased in recent years in cancer research. Yet, there is limited understanding of how this process of bringing lived experience into research works, and of what leads to tokenistic and non-tokenistic engagement. AIMS AND OBJECTIVES:To explore public engagement in cancer research in the United States from the perspective of both lived-experience experts and researchers. METHODS:A qualitative study consisting of interviews with 15 lived-experience experts engaged in cancer research and 15 cancer researchers. Data were analysed using reflexive thematic analysis. RESULTS:Findings are captured in four themes shared by both participant groups and mapped onto Jürgen Habermas's theory of communicative action, which helped explain the engagement process. First, public engagement was invaluable to research, but also personally and professionally. Second, underlying foundations and principles underpinned the non-tokenistic engagement process. Third, engagement led to the creation of a partnership between cancer researchers and lived-experience experts. Fourth, engagement was about creating and enriching culture within a research institution and in the community. CONCLUSIONS:The study provided a better understanding of public engagement in cancer research. Habermas's communicative action theory offered an analytical framework to elicit the importance of mutual understanding in developing common ground between lived-experience experts and researchers. It highlighted that tensions between lived-experience experts and researchers, choosing not to act on feedback, and limited institutional support can lead to tokenistic engagement. PATIENT OR PUBLIC CONTRIBUTION:Four Community Advisory Board members contributed to this study from design through dissemination. They co-developed topic guides, co-analysed data, co-wrote this paper and are named as co-authors.
Mindfulness-based interventions (MBIs) are increasingly proposed as non-pharmacological approaches to support psychological well-being among people experiencing dementia or memory-related decline, yet the evidence base remains fragmented. This mixed-methods narrative review examined the feasibility, acceptability and potential mechanisms of MBIs for individuals with subjective cognitive decline (SCD), mild cognitive impairment (MCI), cognitive impairment (CI) and dementia. Searches of MEDLINE, CINAHL and SCOPUS (inception–2024) identified qualitative and quantitative studies evaluating MBSR, MBCT or adapted mindfulness programmes that reported feasibility, acceptability or mechanisms of action. Study quality was assessed using CASP tools, and findings were integrated using a parallel-results convergent synthesis. Twenty-one studies met inclusion criteria. Across populations, MBIs demonstrated high session attendance and favourable acceptability, although home-practice adherence decreased with more advanced impairment. Within included studies, evidence for improvements in psychological outcomes (e.g. stress, agitation, affect, worry) was mixed and largely derived from small, underpowered pilot trials. Preliminary mechanistic signals—such as enhanced non-reactivity, attentional regulation and reduced stress markers—were most evident in SCD and MCI groups. Qualitative findings indicated shifts in emotional regulation, acceptance of memory loss and greater perceived agency in daily coping. Together, the convergence of quantitative and qualitative evidence suggests that MBIs are feasible and valued by people with memory loss, but robust mechanistic and efficacy claims are premature. Larger, theoretically informed trials with mechanistic measures are needed to determine who benefits, how and under what conditions. This study is not preregistered.
Abstract BackgroundPatient and public engagement in research can enhance its quality, ensure the relevance of findings to the public, and make the process more inclusive and democratic. Ensuring meaningful engagement can be challenging and requires careful preparation. ObjectiveThis paper presents an approach for a public engagement process in a qualitative study, describing how lived experience experts act as coresearchers from the design of the study through to analysis and dissemination. MethodsA community advisory board (CAB) comprising 4 lived experience experts will serve as coresearchers in the qualitative study. The CAB’s role spans all stages of this qualitative research. Their engagement will consist of approximately monthly meetings focusing on different research stages as the research team progresses through the study. The meetings will be designed by PT with input from the CAB to shape the discussion focus and identify relevant training needs. The lived experience experts, alongside PT, will jointly evaluate the CAB activities through regular reflective discussions and map these onto the established public engagement evaluation framework. ResultsFindings from the CAB evaluation will provide insights into how meaningful the process was for both lived experience experts and the research team by capturing how lived experience experts were involved, whether their voices were heard, whether their feedback led to change, and who controlled the agenda. The study received funding in 2025, and all 4 members of the CAB were recruited in July and August 2025. In September, only the first stage was underway. As this paper reports an approach to public engagement, no findings are available at this point. The CAB evaluation is expected to take place at the end of the research project in mid-2026. ConclusionsThe findings will offer a new understanding of how to engage lived experience experts, consequently providing guidance for other researchers to plan realistic engagement activities and genuinely include more members of the public with lived experience in qualitative research.
Background Having a terminal illness is associated with an increased risk of living in poverty and destitution at end of life. This is more pronounced for migrants who may not have the same social and cultural capital, or local family support that established citizens have. This paper explores the financial challenges for migrants with a terminal illness. Methodology Qualitative interviews were conducted with healthcare staff, and legal and migration specialists supporting migrants with a terminal illness in the UK. A total of 22 people were interviewed, comprising 14 working within health/palliative care settings, four in legal/policy settings, and four in migrant support. Findings Thematic analysis identified that having a terminal illness as a migrant accompanies severe financial and material challenge. Migrants continued to work while receiving chemotherapy and used unregulated money lenders to stave off poverty. The expense of visa applications, insecure visa terms, and exclusion from statutory and healthcare support combined to produce enormous financial, emotional and physical strain on terminally ill migrants. Interviewees situated these challenges as both impediments to their work supporting migrants, and as constituting a form of bureaucratic violence. Conclusion Financial precarity for migrants with terminal illness was exacerbated by bureaucratic systems and processes (e.g., immigration policy and welfare exclusion). There is urgent need for systemic reform to ensure that good quality of living and dying is not a privilege of the financially secure. However, this is predicated on a political will and interest to improve the lives and deaths of migrants with terminal illness.
Migration is an established global phenomenon. While many newly arrived migrants have better health than the general population of the country they have moved to, migrants also have their own healthcare needs and face particular issues when diagnosed with a terminal illness. First generation migrants are less likely to have social, financial, and medical supports when faced with a terminal illness. These factors make first generation migrants an important group to understand in order to inform service commissioning and delivery. The systematic review was an international qualitative evidence synthesis of English language papers from 2000 to 2023. The primary research question underpinning this novel review was: What are the experiences of first-generation migrants who live with or who are supporting a relative with a terminal illness in the country to which they have moved? Databases (MEDLINE; CINAHL; PsycINFO; SocIndex; Web of Science) were searched in August 2023. Records of 1593 publications were screened, resulting in 39 included papers. CASP was used to inform quality appraisal. First generation migrants struggled with accessing suitable health services and treatments. Structural barriers, such as lack of support for translation/interpreting and for navigating care was visible alongside limited social support networks. Financial precarity ran as a thread through the data, with participants needing to work while unwell, and being unable to return to their country of origin for their own death or to bear witness to the deaths of relatives. First generation migrants experienced caregiving through the lens of difference; maintaining autonomy in the country they would die in, intersected with cultural practices and expectations such as not sharing the prognosis, and mis-matched ideas regarding quality of care provided. The identity of ‘migrant’ is heterogenous, poorly defined, and may have resulted in identifying studies conducted in the global north. Diasporic dying is not a new phenomenon, yet services and policies fail to meet people’s needs. Services urgently need to identify and dismantle structures which uphold and perpetuate inequality, including this population who suffer multiple disadvantages and risks. CRD42023457054.
OBJECTIVES:This study calculates the actual and weighted changes in population, incidence, and treatment use to better understand the inequities in use affecting the delivery of prostate cancer services. METHODS:Health data held by Scotland's electronic Data Research and Innovation Service were linked with National Records of Scotland census data and Information Services Division health data to identify men aged ≥45 living in Scotland who had prostate cancer. Data were analyzed descriptively and weighted using National Records of Scotland census data. RESULTS:Demand for secondary and tertiary services nationally coincided with the implementation of new technologies and treatments in Scotland. Furthermore, differences in demand for treatment services were evident between regions that could not be explained by urban and rural factors. CONCLUSION:These findings demonstrate the level of national variability that governments and health care administrations need to consider when distributing resources to services. IMPLICATIONS FOR NURSING PRACTICE:This report highlights the challenges for cancer nurses in maintaining skills and competencies in light of rapidly emerging technologies, and the unique demands on local and regional services, which will affect mentorship across regions.
Despite the promise of the NHS being open to all, charging regulations and policy for non-UK citizens have been introduced. This article reports an analysis of policies and parliamentary debates linked to the UK's Immigration Health Surcharge. We use Bacchi's 'what's the problem represented to be' approach to understand how migrants and their healthcare access are represented and problematised within current health policy and related parliamentary debates. Core problem formulations relate to historic over-generosity of the NHS to migrants and overseas visitors; a lack of fairness in contributions to the NHS by British taxpayers compared to migrants; and a threat to the NHS's long-term sustainability due to migrants' and overseas visitors' misuse. This represents migrants as a financial drain on the NHS and, consequently, a risk to its continuation. Together, the problem formulations produce a justification and rationale for the Immigration Health Surcharge and its subsequent increases.
Introduction Poverty and deprivation are invisible yet powerful influences over people's experiences of palliative and end of life care. The socio-economic impact on terminally ill migrants on UK visas is extraordinarily high. Aims To understand the nature of financial precarity and ways in which terminally ill migrants have sought to address financial concerns. Methods A multiple methods study combining policy review, systematic review, media analysis and qualitative interviews. Results While policy positions migrants as a financial drain on society, the literature and our primary interview data tell a different story. While paying both an immigration surcharge (fee) and tax, people struggle to access basic services. Terminally ill migrants face destitution, have to continue working when ill or risk food and fuel poverty, and risk eviction, homelessness and deportation. Some experience barriers in accessing healthcare, and are prevented from planning their death and funeral arrangements due to the lack of finances and financial stability. Newspapers, surprisingly, reflects a compassionate and humane view of migrants that is missing from how services are designed and delivered. Conclusion Family finances and visas are the biggest and most pressing stressor, over and above the terminal illness. Impact There is an urgent need for actions within policy and practice including (i) streamlined and humanised communication processes with the Home Office; (ii) a route-map showing professionals the referral pathways through organisations in palliative care and immigration sectors; (iii) training initiatives ensuring workers are informed of processes and support. There is capacity to mobilise both the media and Ministers to highlight the precarious position of migrants when they have a terminal illness, to change the discourse toward a humane and compassionate approach.
Background:Care home residents often lack access to end-of-life care from specialist palliative care providers. Palliative Care Needs Rounds, developed and tested in Australia, is a novel approach to addressing this. Objective:To co-design and implement a scalable UK model of Needs Rounds. Design:A pragmatic implementation study using the integrated Promoting Action on Research Implementation in Health Services framework. Setting:Implementation was conducted in six case study sites (England, n = 4, and Scotland, n = 2) encompassing specialist palliative care service working with three to six care homes each. Participants:Phase 1: interviews (n = 28 care home staff, specialist palliative care staff, relatives, primary care, acute care and allied health practitioners) and four workshops (n = 43 care home staff, clinicians and managers from specialist palliative care teams and patient and public involvement and engagement representatives). Phase 2: interviews (n = 58 care home and specialist palliative care staff); family questionnaire (n = 13 relatives); staff questionnaire (n = 171 care home staff); quality of death/dying questionnaire (n = 81); patient and public involvement and engagement evaluation interviews (n = 11); fidelity assessment (n = 14 Needs Rounds recordings). Interventions:(1) Monthly hour-long discussions of residents' physical, psychosocial and spiritual needs, alongside case-based learning, (2) clinical work and (3) relative/multidisciplinary team meetings. Main outcome measures:A programme theory describing what works for whom under what circumstances with UK Needs Rounds. Secondary outcomes focus on health service use and cost effectiveness, quality of death and dying, care home staff confidence and capability, and the use of patient and public involvement and engagement. Data sources:Semistructured interviews and workshops with key stakeholders from the six sites; capability of adopting a palliative approach, quality of death and dying index, and Canadian Health Care Evaluation Project Lite questionnaires; recordings of Needs Rounds; care home data on resident demographics/health service use; assessments and interventions triggered by Needs Rounds; semistructured interviews with academic and patient and public involvement and engagement members. Results:The programme theory: while care home staff experience workforce challenges such as high turnover, variable skills and confidence, Needs Rounds can provide care home and specialist palliative care staff the opportunity to collaborate during a protected time, to plan for residents' last months of life. Needs Rounds build care home staff confidence and can strengthen relationships and trust, while harnessing services' complementary expertise. Needs Rounds strengthen understandings of dying, symptom management, advance/anticipatory care planning and communication. This can improve resident care, enabling residents to be cared for and die in their preferred place, and may benefit relatives by increasing their confidence in care quality. Limitations:COVID-19 restricted intervention and data collection. Due to an insufficient sample size, it was not possible to conduct a cost-benefit analysis of Needs Rounds or calculate the treatment effect or family perceptions of care. Conclusions:Our work suggests that Needs Rounds can improve the quality of life and death for care home residents, by enhancing staff skills and confidence, including symptom management, communications with general practitioners and relatives, and strengthen relationships between care home and specialist palliative care staff. Future work:Conduct analysis of costs-benefits and treatment effects. Engagement with commissioners and policy-makers could examine integration of Needs Rounds into care homes and primary care across the UK to ensure equitable access to specialist care. Study registration:This study is registered as ISRCTN15863801. Funding:This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128799) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 19. See the NIHR Funding and Awards website for further award information.
ObjectiveThis meta-analysis evaluates the efficacy of systemic therapy approaches on adult clients with depressive disorders.MethodsThe illness-specific systematic review updates a previous meta-analysis on the efficacy of systemic therapy on psychiatric disorders in adulthood. It integrates the results of 30 randomized controlled trials (RCTs) comparing systemic psychotherapy for depression with an untreated control group or alternative treatments. Studies were identified through systematic searches in relevant electronic databases and cross-referencing. A random-effects model calculated weighted mean effect sizes for each type of comparison (alternative treatments, control group with no alternative treatment/waiting list) on two outcomes (depressive symptoms change, drop-out rates).ResultsOn average, systemic interventions show larger improvements in depressive symptoms compared to no-treatment controls at post-test (g = 1.09) and follow-up (g = 1.23). Changes do not significantly differ when comparing systemic interventions with alternative treatments (post-test g = 0.25; follow-up g = 0.09). Results also vary, in part, by participant age, publication year, and active control condition.ConclusionThis meta-analysis indicates the potential benefits of systemic interventions for adult patients with depression. Future randomized clinical trials in this area should enhance study quality and include relational and other relevant outcome measures.
Patient and public involvement and engagement (PPIE) is an increasingly important component of research conduct to enhance processes and potential for impact, yet is rarely critically interrogated. This paper draws on Foucauldian analysis to highlight the disciplinary powers and tensions arising in PPIE. The paper draws on a nested evaluation interview study with three PPIE members and eight academics, who had been involved in an implementation science study focused on palliative care. PPIE members were involved in the whole study and are co-authors of this article. Through shared values and commitments to the study, a team culture of equality was developed. Yet while power was dispersed and taken-up by all team members, in so doing a self-governance approach within the team was developed. The pace and focus of discussions was at times more subjugating than co-production. Identities and positions were porous; the simplistic division of 'academic' and 'PPIE' did not stand up to scrutiny, with an increasing blurring of boundaries as people's experiences and insights changed over time. Continual, subtle, negotiations of roles, inputs and identities were manifest throughout the project. PPIE in research involves subtle, complex and ongoing disciplinary practices enacted by all members of the team.
This study explores how providing assisted dying services affects the psychological distress of practitioners. It investigates the influence of professional norms that endorse such services within their field. Study 1 included veterinarians (N = 137, 75.2% female, M-age = 43.1 years, SDage = 12.7 years), and Study 2 health practitioner students (N = 386, 71.0% female, M-age = 21.0 years, SDage = 14.4 years). In both studies, participants indicated their degree of psychological distress following exposure to scenarios depicting assisted dying services that were relevant to their respective situations. In Study 1, we found that higher willingness to perform animal euthanasia was associated with lower distress, as were supportive norms. In Study 2, a negative association between a greater willingness to perform euthanasia and lower psychological distress occurred only when the provision of such services was supported by professional norms. In conclusion, psychological distress is buffered by supportive professional norms.
Whilst Scottish healthcare policy has not yet set a clear direction for service transformation needed in lieu of budgetary constraints, it is important that policy makers are cognisant of where policy can support healthcare professionals to overcome barriers to service development, and better meet demand. An analysis of Scottish cancer policy is presented, informed by learning gained from supporting development of cancer services as a practitioner, insights from undertaking health service research, and known barriers to service developments. This paper is structured as five recommendations to policy-makers: the need to develop a shared understanding of quality care between policy makers and healthcare professionals to guide service development in the same direction; revisiting of partnership working given developing health and social care landscape; empowerment of national and regional networks and working groups to develop and implement Gold Standard care in speciality services; sustainability in the development of cancer services; and development of guidance relating to how services should be using and developing patient capacities.
Purpose The study sought to understand the experiences of working age adults with myeloma and their partner/family members, living in Czechia, Germany, and Poland. Methods Qualitative interviews were conducted with 36 working age adults living with myeloma, and three family members. Data were collected from May to October 2022. Thematic analysis was applied to the data. Results Healthcare and state support within each country are described. The degree of work engagement was informed by patients’ symptom burden, treatment needs, state financial aid, and family/financial obligations. Many did not conceptualise their status as involving ‘return to work’ as they had continued to be engaged with their jobs throughout. For some, remote working enabled them to manage treatments/side-effects and their job, while avoiding infection. In some cases, patients did not tell their employer or colleagues about their illness, for fear of discrimination. Conclusion While experiences varied between countries, common across accounts was a struggle to balance ongoing treatments with employment, at a time when participants were expected to finance their own households and maintain their income and roles. Implications for Cancer Survivors To improve quality of life, clinical discussions around treatment decision-making should take into account patients’ attitudes/approach to work, type of work engaged in, and other activities considered important to them. European Union and national cancer plans should set out optimum standards for employers, to ensure an equitable benchmark for how employees are supported. Such approaches would improve legal protections and better enforcement of employer policies to accommodate patients’ limitations in the workplace.
BackgroundRealist evaluation aims to address the knowledge to practice gap by explaining how an intervention is expected to work, as well as what is likely to impact upon the success of its implementation, by developing programme theories that link contexts, mechanisms and outcomes. Co-production approaches to the development of programme theories offer substantial benefits in addressing power relations, including and valuing different types of knowledge, and promoting buy-in from stakeholders while navigating the complex social systems in which innovations are embedded. This paper describes the co-production of an initial programme theory of how an evidence based intervention developed in Australia - called 'Palliative Care Needs Rounds' - might work in England and Scotland to support care home residents approaching their end of life.MethodsUsing realist evaluation and iPARIHS (integrated Promoting Action on Research Implementation in Health Services) we sought to determine how contexts and mechanisms of change might shape implementation outcomes. Pre-intervention online interviews (n = 28) were conducted (February-April 2021), followed by four co-design online workshops with 43 participants (April-June 2021). The online interviews and workshops included a range of stakeholders, including care home staff, specialist palliative care staff, paramedics, general practitioners, and relatives of people living in care homes.ResultsThis methodology paper reports developments in realist evaluation and co-production methodologies, and how they were used to develop context, mechanisms, outcomes (CMOs) configurations, and chains of inference. The initial (pre-intervention) programme theory is used to illustrate this process. Two developments to iPARIHS are described. First, involving stakeholders in the collaborative co-design workshops created opportunities to commence facilitation. Second, we describe developing iPARIHS' innovation component, to include novel stakeholder interpretations, perceptions and anticipated use of the intervention as they participated in workshop discussions.ConclusionsThis rapid and robust co-production methodology draws on interactive collaborative research practices (interviews, workshop discussions of data, illustrative vignettes and visual methods). These innovative and engaging methods can be packaged for online processes to develop, describe and interrogate the CMOs in order to co-produce a programme theory. These approaches also commence facilitation and innovation, and can be adopted in other implementation science and realist studies.
BACKGROUND:Chronic non-cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non-cancer pain has considerable negative impacts on their lives and quality of life, and leads to increased use of healthcare services and medication. In many countries, there are few services for managing children's chronic non-cancer pain, with many services being inadequate. Fourteen Cochrane Reviews assessing the effects of pharmacological, psychological, psychosocial, dietary or physical activity interventions for managing children's chronic non-cancer pain identified a lack of high-quality evidence to inform pain management. To design and deliver services and interventions that meet the needs of patients and their families, we need to understand how children with chronic non-cancer pain and their families experience pain, their views of services and treatments for chronic pain, and which outcomes are important to them. OBJECTIVES:1. To synthesise qualitative studies that examine the experiences and perceptions of children with chronic non-cancer pain and their families regarding chronic non-cancer pain, treatments and services to inform the design and delivery of health and social care services, interventions and future research. 2. To explore whether our review findings help to explain the results of Cochrane Reviews of intervention effects of treatments for children's chronic non-cancer pain. 3. To determine if programme theories and outcomes of interventions match children and their families' views of desired treatments and outcomes. 4. To use our findings to inform the selection and design of patient-reported outcome measures for use in chronic non-cancer pain studies and interventions and care provision to children and their families. The review questions are: 1. How do children with chronic non-cancer pain and their families conceptualise chronic pain? 2. How do children with chronic non-cancer pain and their families live with chronic pain? 3. What do children with chronic non-cancer pain and their families think of how health and social care services respond to and manage their child's chronic pain? 4. What do children with chronic non-cancer pain and their families conceptualise as 'good' chronic pain management and what do they want to achieve from chronic pain management interventions and services? SEARCH METHODS:Review strategy: we comprehensively searched 12 bibliographic databases including MEDLINE, CINAHL, PsycInfo and grey literature sources, and conducted supplementary searches in 2020. We updated the database searches in September 2022. SELECTION CRITERIA:To identify published and unpublished qualitative research with children aged 3 months to 18 years with chronic non-cancer pain and their families focusing on their perceptions, experiences and views of chronic pain, services and treatments. The final inclusion criteria were agreed with a patient and public involvement group of children and young people with chronic non-cancer pain and their families. DATA COLLECTION AND ANALYSIS:We conducted a qualitative evidence synthesis using meta-ethnography, a seven-phase, systematic, interpretive, inductive methodology that takes into account the contexts and meanings of the original studies. We assessed the richness of eligible studies and purposively sampled rich studies ensuring they addressed the review questions. Cochrane Qualitative Methods Implementation Group guidance guided sampling. We assessed the methodological limitations of studies using the Critical Appraisal Skills Programme tool. We extracted data on study aims, focus, characteristics and conceptual findings from study reports using NVivo software. We compared these study data to determine how the studies related to one another and grouped studies by pain conditions for synthesis. We used meta-ethnography to synthesise each group of studies separately before synthesising them all together. Analysis and interpretation of studies involved children with chronic non-cancer pain and their families and has resulted in theory to inform service design and delivery. Sampling, organising studies for synthesis, and analysis and interpretation involved our patient and public involvement group who contributed throughout the conduct of the review. We used the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach to assess our confidence in each review finding. We used a matrix approach to integrate our findings with existing Cochrane Reviews on treatment effectiveness for children's chronic non-cancer pain. MAIN RESULTS:We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Included studies involved 633 participants. GRADE-CERQual assessments of findings were mostly high (n = 21, 58%) or moderate (n = 12, 33%) confidence with three (8%) low or very low confidence. Poorly managed, moderate or severe chronic non-cancer pain had profound adverse impacts on family dynamics and relationships; family members' emotions, well-being, autonomy and sense of self-identity; parenting strategies; friendships and socialising; children's education and future employment prospects; and parental employment. Most children and parents understood chronic non-cancer pain as having an underlying biological cause and wanted curative treatment. However, families had difficulties seeking and obtaining support from health services to manage their child's pain and its impacts. Children and parents felt that healthcare professionals did not always listen to their experiences and expertise, or believe the child's pain. Some families repeatedly visited health services seeking a diagnosis and cure. Over time, some children and families gave up hope of effective treatment. Outcomes measured within trials and Cochrane Reviews of intervention effects did not include some outcomes of importance to children and families, including impacts of pain on the whole family and absence of pain. Cochrane Reviews have mainly neglected a holistic biopsychosocial approach, which specifies the interrelatedness of biological, psychological and social aspects of illness, when selecting outcome measures and considering how chronic pain management interventions work. AUTHORS' CONCLUSIONS:We had high or moderate confidence in the evidence contributing to most review findings. Further research, especially into families' experiences of treatments and services, could strengthen the evidence for low or very low confidence findings. Future research should also explore families' experiences in low- to middle-income contexts; of pain treatments including opioid use in children, which remains controversial; and of social care services. We need development and testing of family-centred interventions and services acceptable to families. Future trials of children's chronic non-cancer pain interventions should include family-centred outcomes.
Prior work has documented considerable diversity among health practitioners regarding their support for voluntary assisted dying (VAD). We examined whether their attitudes are characterised by different combinations of personal support, normative support by other health practitioners, and whether they are predisposed to vicariously experience others' emotions (i.e., empathy). We also examined whether these profiles experienced different mental health outcomes (i.e., burnout and posttraumatic stress) in relation to VAD. To test this, 104 Australian health practitioners were surveyed after VAD was legalised in Victoria, Australia in 2019. Results indicated that practitioners' attitudes were characterised by three profiles: 1) strong personal and normative support (strong VAD supporters), 2) moderate personal and normative support (moderate VAD supporters), and 3) lower personal and normative support (apprehensive practitioners). However, each profile reported similar mental health outcomes. Findings suggest that the normative environments in which health practitioners operate may explain their diverse attitudes on VAD.
Introduction In Scotland, prostate cancer services have struggled to meet demand, and urological cancer services have missed Scottish Government waiting time targets to a greater extent than other cancer services. This study provides understanding of the capacity development needs of a national prostate cancer service including why the service had been unable to adapt to meet demand and how capacity could be developed. Methods Delphi technique was applied to a purposive sample of prostate cancer clinicians working across Scotland between 2015 and 2017. Interviews were conducted with healthcare professionals involved in delivery of care to people with prostate cancer including General Practitioners, followed by questionnaires which were distributed to Specialist Nurses, Oncologists and Urologists involved in delivering specialist prostate cancer services within NHS Scotland. Findings are reported from interviews analysed using a directed approach to content analysis, followed by three rounds of iterative online questionnaires analysed using descriptive statistics. Results Reform is needed to meet demand within prostate cancer services in Scotland. Barriers to capacity development included: lack of shared understanding of quality of care between policy makers and healthcare professionals; lack of leadership of service developments nationally and regionally; and difficulties in drawing on other capacities to support the service. Cohesive working and a need for efficient training for nurse specialists were needed to develop capacity. Consensus was reached for development of national working groups to set standards for quality care (100% agreement) and further development of existing regional working groups (100% agreement) to implement this care (91% agreement), which should include input from primary and community care practitioners (100% agreement) to meet demand. Discussion This work provides important understanding of barriers and facilitators to service development across a national service, including highlighting the importance of a shared vision for quality care between policy makers and healthcare professionals. Mechanisms to support service change are identified.