FOUND Trial: randomised controlled trial study protocol for case finding of obstructive sleep apnoea in primary care using a novel device.

INTRODUCTION: Obstructive sleep apnoea (OSA) is a common, but underdiagnosed, sleep disorder. If untreated, it leads to poor health outcomes, including Alzheimer's disease, cancer, cardiovascular disease and all-cause mortality. Our aim is to determine the feasibility and cost-effectiveness of moving the testing for OSA into general practice and how general practitioner (GP)-based screening affects overall detection rates. METHODS AND ANALYSIS: Randomised controlled trial of case finding of OSA in general practice using a novel Medicines and Healthcare products Regulatory Agency-registered device (AcuPebble SA100) compared with usual care with internal feasibility phase. A diverse sample of general practices (approximately 40) from across the West Midlands Clinical Research Network will identify participants from their records. Eligible participants will be aged 50-70 years with body mass index >30 kg/m2 and diabetes (type 1 or 2) and/or hypertension (office blood pressure >145/90 mm Hg or on treatment). They will exclude individuals with known OSA or chronic obstructive pulmonary disease, or those they deem unable to take part. After eligibility screening, consent and baseline assessment, participants will be randomised to either the intervention or control group. Participants in the intervention arm will receive by post the AcuPebble sleep test kit. Those in the control arm will continue with usual care. Follow-up questionnaires will be completed at 6 months. The study is powered (90%) to detect a 5% difference and will require 606 patients in each arm (713 will be recruited to each arm to allow for attrition). Due to the nature of the intervention, participants and GPs will not be blinded to the allocation. OUTCOMES: Primary: Detection rate of moderate-to-severe OSA in the intervention group versus control group. Secondary: Time to diagnosis and time to treatment for intervention versus control group for mild, moderate and severe OSA; cost-effectiveness analysis comparing the different testing pathways. ETHICS AND DISSEMINATION: The trial started on 1 November 2022. Ethical approval was granted from the South Central Oxford A Research Ethics Committee on 9 June 2023 (23/SC/0188) (protocol amendment version 1.3; update with amendment and approval to renumber to V2.0 on 29 August 2023). Patient recruitment began on 7 January 2024; initial planned end date will be on 31 April 2025.Results will be uploaded to the ISRCTN register within 12 months of the end of the trial date, presented at conferences, submitted to peer-reviewed journals and distributed via our patient and public involvement networks.The University of Warwick will act as the trial sponsor. The trial will be conducted in accordance with the Sponsor and Primary Care Clinical Trials Unit standard operating procedures. TRIAL REGISTRATION NUMBER: ISRCTN 16982033.

Improving patients', carers' and primary care healthcare professionals' experiences of discharge communication from specialist palliative care to community settings: a protocol for a qualitative interview study.

BACKGROUND: Patients who have benefited from specialist intervention during periods of acute/complex palliative care needs often transition from specialist-to-primary care once such needs have been controlled. Effective communication between services is central to co-ordination of care to avoid the potential consequences of unmet needs, fragmented care, and poor patient and family experience. Discharge communications are a key component of care transitions. However, little is known about the experiences of those primarily receiving these communications, to include patients', carers' and primary care healthcare professionals. This study aims to have a better understanding of how the discharge communications from specialist palliative care services to primary care are experienced by patients, carers, and healthcare professionals, and how these communications might be improved to support effective patient-centred care. METHODS: This is a 15-month qualitative study. We will interview 30 adult patients and carers and 15 healthcare professionals (n = 45). We will seek a range of experiences of discharge communication by using a maximum variation approach to sampling, including purposively recruiting people from a range of demographic backgrounds from 4-6 specialist palliative care services (hospitals and hospices) as well as 5-7 general practices. Interview data will be analysed using a reflexive thematic approach and will involve input from the research and advisory team. Working with clinicians, commissioners, and PPI representatives we will co-produce a list of recommendations for discharge communication from specialist palliative care. DISCUSSION: Data collection may be limited by the need to be sensitive to participants' wellbeing needs. Study findings will be shared through academic publications and presentations. We will draft principles for how specialist palliative care clinicians can best communicate discharge with patients, carers, and primary care clinicians. These will be shared with clinicians, policy makers, commissioners, and PPI representatives and key stakeholders and organisations (e.g. Hospice UK) and on social media. Key outputs will be recommendations for a specialist palliative care discharge proforma. TRIAL REGISTRATION: Registered in ISRCTN Registry on 29.12.2023 ref: ISRCTN18098027.

General practice management after transition events: protocol for an experience-based co-design study.

BACKGROUND: Discharge from hospital is a critical part of the patient journey, particularly for older patients with multi-morbidity and polypharmacy. General practice has a key role in managing the post-discharge course of patients. A communication intervention for use in General Practice in the immediate post-discharge period has great potential to improve shared decision making, enhancing patient experiences of post-discharge care. AIM: General Practice Management After Transition Events (GP-MATE) aims to produce a tool for older patients and their carers (GP-MATE) which will assist better communication with their general practice about their care after discharge, thereby improving patient safety outcomes. DESIGN & SETTING: Experience-Based Co-Design (EBCD) study involving general practices across the West Midlands. METHOD: A slightly modified approach to EBCD will be followed to create GP-MATE. A focused ethnography undertaken at general practices will provide an understanding of practices' systems for post-discharge management of older patients. Semi-structured video interviews with recently discharged older patients or their carers will be edited into a trigger film. Finally, co-design workshops with older people, carers and healthcare staff working in general practices will take place with participants from three regions across England. CONCLUSION: EBCD will be used to take a patient centric approach towards creating GP-MATE; patients' and carers' priorities will be directly reflected within the tool. GP-MATE will be a low-cost intervention which improves health literacy, empowering patients to fill the emerging gap in continuity in the post-discharge period and enhancing patient experiences of post discharge care.

Rationale for the shielding policy for clinically vulnerable people in the UK during the COVID-19 pandemic: a qualitative study.

INTRODUCTION: Shielding aimed to protect those predicted to be at highest risk from COVID-19 and was uniquely implemented in the UK during the first year of the pandemic from March 2020. As the first stage in the EVITE Immunity evaluation (Effects of shielding for vulnerable people during COVID-19 pandemic on health outcomes, costs and immunity, including those with cancer:quasi-experimental evaluation), we generated a logic model to describe the programme theory underlying the shielding intervention. DESIGN AND PARTICIPANTS: We reviewed published documentation on shielding to develop an initial draft of the logic model. We then discussed this draft during interviews with 13 key stakeholders involved in putting shielding into effect in Wales and England. Interviews were recorded, transcribed and analysed thematically to inform a final draft of the logic model. RESULTS: The shielding intervention was a complex one, introduced at pace by multiple agencies working together. We identified three core components: agreement on clinical criteria; development of the list of people appropriate for shielding; and communication of shielding advice. In addition, there was a support programme, available as required to shielding people, including food parcels, financial support and social support. The predicted mechanism of change was that people would isolate themselves and so avoid infection, with the primary intended outcome being reduction in mortality in the shielding group. Unintended impacts included negative impact on mental and physical health and well-being. Details of the intervention varied slightly across the home nations of the UK and were subject to minor revisions during the time the intervention was in place. CONCLUSIONS: Shielding was a largely untested strategy, aiming to mitigate risk by placing a responsibility on individuals to protect themselves. The model of its rationale, components and outcomes (intended and unintended) will inform evaluation of the impact of shielding and help us to understand its effect and limitations.

Role and response of primary healthcare services in community end-of-life care during COVID-19: Qualitative study and recommendations for primary palliative care delivery.

BACKGROUND: The need for end-of-life care in the community increased significantly during the COVID-19 pandemic. Primary care services, including general practitioners and community nurses, had a critical role in providing such care, rapidly changing their working practices to meet demand. Little is known about primary care responses to a major change in place of care towards the end of life, or the implications for future end-of-life care services. AIM: To gather general practitioner and community nurse perspectives on factors that facilitated community end-of-life care during the COVID-19 pandemic, and to use this to develop recommendations to improve future delivery of end-of-life care. DESIGN: Qualitative interview study with thematic analysis, followed by refinement of themes and recommendations in consultation with an expert advisory group. PARTICIPANTS: General practitioners (n = 8) and community nurses (n = 17) working in primary care in the UK. RESULTS: General practitioner and community nurse perspectives on factors critical to sustaining community end-of-life care were identified under three themes: (1) partnership working is key, (2) care planning for end-of-life needs improvement, and (3) importance of the physical presence of primary care professionals. Drawing on participants' experiences and behaviour change theory, recommendations are proposed to improve end-of-life care in primary care. CONCLUSIONS: To sustain and embed positive change, an increased policy focus on primary care in end-of-life care is required. Targeted interventions developed during COVID-19, including online team meetings and education, new prescribing systems and unified guidance, could increase capacity and capability of the primary care workforce to deliver community end-of-life care.

Correction: A Web-Based Prostate Cancer-Specific Holistic Needs Assessment (CHAT-P): Multimethod Study From Concept to Clinical Practice.

[This corrects the article DOI: 10.2196/32153.].

A Web-Based Prostate Cancer-Specific Holistic Needs Assessment (CHAT-P): Multimethod Study From Concept to Clinical Practice.

BACKGROUND: Men with prostate cancer experience immediate and long-term consequences of the disease and its treatment. They require both long-term monitoring for recurrence or progression and follow-up to identify and help manage psychosocial and physical impacts. Holistic Needs Assessment aims to ensure patient-centered continuing cancer care. However, paper-based generic tools have had limited uptake within cancer services, and there is little evidence of their impact. With the expansion of remote methods of care delivery and to enhance the value of generic tools, we developed a web-based Composite Holistic Needs Assessment Adaptive Tool-Prostate (CHAT-P) specifically for prostate cancer. OBJECTIVE: This paper described the context, conceptual underpinning, and approach to design that informed the development of CHAT-P, starting from the initial concept to readiness for deployment. Through this narrative, we sought to contribute to the expanding body of knowledge regarding the coproduction process of innovative digital systems with potential for enhanced cancer care delivery. METHODS: The development of CHAT-P was guided by the principles of coproduction. Men with prostate cancer and health care professionals contributed to each stage of the process. Testing was conducted iteratively over a 5-year period. An initial rapid review of patient-reported outcome measures identified candidate items for inclusion. These items were categorized and allocated to overarching domains. After the first round of user testing, further items were added, improvements were made to the adaptive branching system, and response categories were refined. A functioning version of CHAT-P was tested with 16 patients recruited from 3 outpatient clinics, with interviewers adopting the think-aloud technique. Interview transcripts were analyzed using a framework approach. Interviews and informal discussions with health care professionals informed the development of a linked care plan and clinician-facing platform, which were incorporated into a separate feasibility study of digitally enhanced integrated cancer care. RESULTS: The findings from the interview study demonstrated the usability, acceptability, and potential value of CHAT-P. Men recognized the benefits of a personalized approach and the importance of a holistic understanding of their needs. Preparation for the consultation by the completion of CHAT-P was also recognized as empowering. The possible limitations identified were related to the importance of care teams responding to the issues selected in the assessment. The subsequent feasibility study highlighted the need for attention to men's psychological concerns and demonstrated the ability of CHAT-P to capture red flag symptoms requiring urgent investigation. CONCLUSIONS: CHAT-P offers an innovative means by which men can communicate their concerns to their health care teams before a physical or remote consultation. There is now a need for a full evaluation of the implementation process and outcomes where CHAT-P is introduced into the clinical pathway. There is also scope for adapting the CHAT-P model to other cancers.

Communication of palliative care needs in discharge letters from hospice providers to primary care: a multisite sequential explanatory mixed methods study.

BACKGROUND: The provision of palliative care is increasing, with many people dying in community-based settings. It is essential that communication is effective if and when patients transition from hospice to community palliative care. Past research has indicated that communication issues are prevalent during hospital discharges, but little is known about hospice discharges. METHODS: An explanatory sequential mixed methods study consisting of a retrospective review of hospice discharge letters, followed by hospice focus groups, to explore patterns in communication of palliative care needs of discharged patients and describe why these patients were being discharged. Discharge letters were extracted for key content information using a standardised form. Letters were then examined for language patterns using a linguistic methodology termed corpus linguistics. Thematic analysis was used to analyse the focus group transcripts. Findings were triangulated to develop an explanatory understanding of discharge communication from hospice care. RESULTS: We sampled 250 discharge letters from five UK hospices whereby patients had been discharged to primary care. Twenty-five staff took part in focus groups. The main reasons for discharge extracted from the letters were symptoms "managed/resolved" (75.2%), and/or the "patient wishes to die/for care at home" (37.2%). Most patients had some form of physical needs documented on the letters (98.4%) but spiritual needs were rarely documented (2.4%). Psychological/emotional needs and social needs were documented in 46.4 and 35.6% of letters respectively. There was sometimes ambiguity in "who" will be following up "what" in the discharge letters, and whether described patients' needs were resolved or ongoing for managing in the community setting. The extent to which patients received a copy of their discharge letter varied. Focus groups conveyed a lack of consensus on what constitutes "complexity" and "complex pain". CONCLUSIONS: The content and structure of discharge letters varied between hospices, although generally focused on physical needs. Our study provides insights into patterns associated with those discharged from hospice, and how policy and guidance in this area may be improved, such as greater consistency of sharing letters with patients. A patient-centred set of hospice-specific discharge letter principles could help improve future practice.

Facilitators and barriers to the delivery of palliative care to children with life-limiting and life-threatening conditions: a qualitative study of the experiences and perceptions of healthcare professionals.

OBJECTIVE: To understand healthcare system facilitators and barriers to the delivery of palliative care for children with life-limiting and life-threatening conditions and their family members. DESIGN: Focus groups with children's palliative care professionals. Data were analysed using thematic analysis. SETTING: Four regions of England (West Midlands, South West, Yorkshire and Humber, and London) from December 2017 to June 2018. PARTICIPANTS: Healthcare professionals (doctors, nurses and allied healthcare professionals) working in children's palliative care services. FINDINGS: A total of 71 healthcare professionals participated in the focus groups. Three overarching themes were identified which influenced whether and when children were referred to and started to receive palliative care: (1) the unspoken background of clinical uncertainty which often delayed palliative care; (2) the cultural 'collusion of immortality', where conversations about the possibility of dying can be avoided or deferred; and (3) the role of paediatric palliative care teams in 'illuminating the blind spot' of palliative care as well as providing hands-on care. CONCLUSIONS: Palliative care is a holistic approach to care that focuses on quality of life for people living with life-limiting and life-threatening conditions that can be delivered alongside active treatment. There is a need to prioritise and integrate this into healthcare services for children more effectively if improvements in care are to be realised. While more specialist paediatric palliative care services are needed, the unspoken background of clinical uncertainty needs to be addressed together with the collusion of immortality within healthcare culture and organisations.

The use of simulation in medical student education on the topic of breaking bad news: A systematic review.

BACKGROUND: Simulated patients (SPs) are widely used, but the most effective way of utilising them in undergraduate breaking bad news (BBN) medical education is unknown. OBJECTIVES: To conduct a systematic review into SP's use in developing BBN skills in medical students. METHODS: 14 databases searched with the terms "Medical education", "Patient simulation", "Bad news". Data was systematically extracted, and thematic analysis undertaken. RESULTS: Of 2117 articles screened, 29 publications met the inclusion criteria. These demonstrated a variety of SP models, including actors as patients (65.5%), peers (7.0%), and cancer survivors (3.5%). with delivery at varying times in the curricula. SPs are uniformly reported as having positive impact, but there is a lack of high-quality evidence comparing the use of differing forms of training. There was some evidence that virtual SPs were as useful as in-person SPs. CONCLUSIONS: SPs allow students to practise vital BBN communication skills without risking detriment to patient care. Despite the heterogeneity of ways in which SPs have been used, the benefits of different approaches and when and how these should be delivered remains unclear. PRACTICE IMPLICATIONS: Further educational development and research is needed about the use of SPs to support undergraduate BBN communication skills development.

An evaluation of the experiences of young people in Patient and Public Involvement for palliative care research.

BACKGROUND: The active involvement of patients and the public in the design and conduct of research (Patient and Public Involvement) is important to add relevance and context. There are particular considerations for involving children and young people in research in potentially sensitive and emotional subject areas such as palliative care. AIM: To evaluate the experiences of young people of Patient and Public Involvement for a paediatric palliative care research study. DESIGN: Anonymous written feedback was collected from group members about their experiences of Patient and Public Involvement in a paediatric palliative care research study. An inductive thematic analysis of the feedback was conducted using NVivo. SETTING / PARTICIPANTS: Young people aged 12-22 years who were members of existing advisory groups at a children's hospital, hospice and the clinical research network in the West Midlands, UK. RESULTS: Feedback was provided by 30 young people at three meetings, held between December 2016 and February 2017. Three themes emerged: (1) Involvement: Young people have a desire to be involved in palliative care research, and recognise the importance of the subject area.(2) Impact: Researchers should demonstrate the impact of the involvement work on the research, by regularly providing feedback. (3) Learning: Opportunities to learn both about the topic and about research more widely were valued. CONCLUSIONS: Young people want to be involved in palliative care research, and recognise its importance. A continuous relationship with the researcher throughout the study, with clear demonstration of the impact that their input has on the research plans, are important.

Experiences of general practice of children with complex and palliative care needs and their families: a qualitative study.

OBJECTIVES: To investigate the views and experiences of general practice of children with life-limiting and life-threatening conditions, and their family members, through secondary analysis of a qualitative serial interview study. Thematic analysis was conducted on all interview data relating to experiences of primary care. SETTING: West Midlands, UK. PARTICIPANTS: A total of 31 participants (10 children with life-limiting and life-threatening conditions and 21 family members) from 14 families. STUDY DESIGN AND SETTING: Secondary thematic analysis of qualitative interview data from a study carried out in the West Midlands, UK. METHOD: 41 serial interviews with 31 participants from 14 families: 10 children aged 5-18 years with life-limiting and life-threatening conditions, and 21 of their family members. RESULTS: Three key themes emerged: (1) poor experiences of general practice cause children and families to feel isolated, (2) children and families value support from general practice, and (3) there are practical ways through which general practice has the potential to provide important aspects of care. Children and families reported benefits from fostering their relationship with their general practice in order to access important aspects of care, including the assessment and management of acute illness, chronic disease and medication reviews, and holistic support. CONCLUSION: Children with life-limiting and life-threatening conditions and their families value the involvement of general practice in the care, alongside their paediatric specialists. Ways of developing and providing such support as part of an integrated system of care need to be developed.

Experiences of healthcare, including palliative care, of children with life-limiting and life-threatening conditions and their families: a longitudinal qualitative investigation.

OBJECTIVES: To understand the experiences and perceptions of healthcare services of children with life-limiting and life-threatening conditions and their family members, including palliative care. DESIGN: Longitudinal qualitative interview study with children and their family members. Up to three in-depth interviews were conducted over 13 months with each child and family. Data were analysed using thematic analysis. SETTING: Community and hospital settings in the West Midlands, UK. PARTICIPANTS: Children with a diverse range of life-limiting and life-threatening conditions, aged between 5 and 18 years, and their family members. FINDINGS: 31 participants from 14 families including 10 children took part in 41 interviews. Two children died during the course of the study. Children accepted their conditions as part of life and had other priorities for living. Experiences of 'fighting' a fragmented healthcare system that focused on the biomedical aspects of their care were described. The possibility of death was rarely openly discussed. Palliative care tended to be conceptualised as a distinct service or phase of a child's condition, rather than a broad approach. Access to palliative care depended on the availability of specialist services, and on trusted interpersonal relationships with healthcare professionals who could share uncertainty and the family's emotional burden. CONCLUSIONS: There is an urgent need to create a more child and family centred approach that enables palliative care to be truly integrated into the wider healthcare of children with life-limiting and life-threatening conditions. Trusted, interpersonal relationships with healthcare professionals, and more effective coordination of care are fundamental to achieving this, and should be valued and enabled throughout the healthcare system.

Socioeconomic status and HRT prescribing: a study of practice-level data in England.

BACKGROUND: Concerns have been raised that women from deprived backgrounds are less likely to be receiving hormone replacement therapy (HRT) treatment and its benefits, although evidence in support of this is lacking. AIM: To investigate general practice HRT prescription trends and their association with markers of socioeconomic deprivation. DESIGN AND SETTING: Cross-sectional study of primary care prescribing data in England in 2018. METHOD: Practice-level prescribing rate was defined as the number of items of HRT prescribed per 1000 registered female patients aged ≥40 years. The association between Index of Multiple Deprivation (IMD) score and HRT prescribing rate was tested using multivariate Poisson regression, adjusting for practice proportions of obesity, smoking, hypertension, diabetes, coronary heart disease and cerebrovascular disease, and practice list size. RESULTS: The overall prescribing rate of HRT was 29% lower in practices from the most deprived quintile compared with the most affluent (incidence rate ratio [IRR] = 0.71; 95% confidence interval [CI] = 0.68 to 0.73). After adjusting for all cardiovascular disease outcomes and risk factors, the prescribing rate in the most deprived quintile was still 18% lower than in the least deprived quintile (adjusted IRR = 0.82; 95% CI = 0.77 to 0.86). In more deprived practices, there was a significantly higher tendency to prescribe oral HRT than transdermal preparations (P<0.001). CONCLUSION: This study highlights inequalities associated with HRT prescription. This may reflect a large unmet need in terms of menopause care in areas of deprivation. Further research is needed to identify the factors from patient and GP perspectives that may explain this.

Women's experiences of diagnosis and management of polycystic ovary syndrome: a mixed-methods study in general practice.

BACKGROUND: Polycystic ovary syndrome (PCOS) is a common lifelong metabolic condition with serious associated comorbidities. Evidence points to a delay in diagnosis and inconsistency in the information provided to women with PCOS. AIM: To capture women's experiences of how PCOS is diagnosed and managed in UK general practice. DESIGN AND SETTING: This was a mixed-methods study with an online questionnaire survey and semi-structured telephone interviews with a subset of responders. METHOD: An online survey to elicit women's experiences of general practice PCOS care was promoted by charities and BBC Radio Leicester. The survey was accessible online between January 2018 and November 2018. A subset of responders undertook a semi-structured telephone interview to provide more in-depth data. RESULTS: A total of 323 women completed the survey (average age 35.4 years) and semi-structured interviews were conducted with 11 women. There were five key themes identified through the survey responses. Participants described a variable lag time from presentation to PCOS diagnosis, with a median of 6-12 months. Many had experienced mental health problems associated with their PCOS symptoms, but had not discussed these with the GP. Many were unable to recall any discussion about associated comorbidities with the GP. Some differences were identified between the experiences of women from white British backgrounds and those from other ethnic backgrounds. CONCLUSION: From the experiences of the women in this study, it appears that PCOS in general practice is not viewed as a long-term condition with an increased risk of comorbidities including mental health problems. Further research should explore GPs' awareness of comorbidities and the differences in PCOS care experienced by women from different ethnic backgrounds.

Promoting integrated care in prostate cancer through online prostate cancer-specific holistic needs assessment: a feasibility study in primary care.

PURPOSE: This study assessed the feasibility of implementing a novel model of integrated prostate cancer care involving an online prostate cancer-specific holistic needs assessment (sHNA) and shared digital communication between patients and their healthcare professionals (HCPs). The sHNA produces a semi-automated care plan that is finalised in consultation between the patient and their practice nurse. METHODS: Men living with and beyond prostate cancer were invited to participate in a 9-month non-randomised cluster controlled feasibility study. The intervention group was asked to complete the sHNA on three occasions. Data were collected using Patient Reported Outcome Measures (PROMs) at baseline, 10 and 24 weeks, and 9 months. Outcomes included recruitment, retention, acceptability, and engagement with the sHNA and PROMs. RESULTS: Fourteen general practices (8 intervention and 6 control), and 41 men (29 intervention and 12 control) participated. Initial patient engagement with the sHNA was high, with all but one receiving practice nurse-led follow-up and an individualised care plan. The sHNA proved useful in identifying 'red flag' symptoms, and helping practice nurses decide when to seek further medical care for the patients. There was a high level of acceptability for patients and HCPs. However, integration of care did not occur as intended because of problems linking hospital and general practice IT systems. CONCLUSION: While the study demonstrated the feasibility of implementing the sHNA, it did not meet the a priori progression criteria; as such, undertaking a definitive randomised controlled trial is not appropriate until the identified methodological and technical issues have been addressed.

Achieving beneficial outcomes for children with life-limiting and life-threatening conditions receiving palliative care and their families: A realist review.

BACKGROUND: Palliative care for children and young people is a growing global health concern with significant resource implications. Improved understanding of how palliative care provides benefits is necessary as the number of children with life-limiting and life-threatening conditions rises. AIM: The aim is to investigate beneficial outcomes in palliative care from the perspective of children and families and the contexts and hidden mechanisms through which these outcomes can be achieved. DESIGN: This is a systematic realist review following the RAMESES standards. A protocol has been published in PROSPERO (registration no: CRD42018090646). DATA SOURCES: An iterative literature search was conducted over 2 years (2015-2017). Empirical research and systematic reviews about the experiences of children and families in relation to palliative care were included. RESULTS: Sixty papers were included. Narrative synthesis and realist analysis led to the proposal of context-mechanism-outcome configurations in four conceptual areas: (1) family adaptation, (2) the child's situation, (3) relationships with healthcare professionals and (4) access to palliative care services. The presence of two interdependent contexts, the 'expert' child and family and established relationships with healthcare professionals, triggers mechanisms, including advocacy and affirmation in decision-making, which lead to important outcomes including an ability to place the emphasis of care on lessening suffering. Important child and family outcomes underpin the delivery of palliative care. CONCLUSION: Palliative care is a complex, multifactorial intervention. This review provides in-depth understanding into important contexts in which child and family outcomes can be achieved so that they benefit from palliative care and should inform future service development and practice.

"Good care" throughout the prostate cancer pathway: Perspectives of patients and health professionals.

PURPOSE: Men in follow up for prostate cancer represent the largest proportion of patients with the illness. In the United Kingdom, primary care is increasingly involved in caring for these patients. Little is known however regarding the factors that determine men's evaluation of their care and primary healthcare professionals' perceptions of the care they provide. This study aimed to investigate patient and primary care based health professionals' perspectives of what constitutes 'good care' for men with prostate cancer, including limiting or facilitating factors. METHOD: Semi-structured interviews were conducted with ten patients and eight primary care based healthcare professionals and thematically analysed in collaboration with a patient representative group. RESULTS: Good care was identified by patient participants, with aspects of communication, including information, active participation, sensitivity of approach and context being highlighted. Healthcare professionals also prioritised communication as the basis of good care and recognised the benefits of locally based services. CONCLUSIONS: Treatments in prostate and other cancers continue to improve with corresponding increases in survival. To further develop and sustain the good care that patients require to help them cope with diagnosis, treatment and long term adjustment, investment in resources, training and innovative communication systems between patients, generalist and specialist services are required.