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Background: Tooth decay has a significant impact on children, their families and wider society. The dental consultation provides an opportunity to prevent tooth decay by engaging in an effective oral health conversation with parents and children. However, there is limited literature which explores how these oral health conversations are delivered, received, and understood. Aim: To explore the common facilitators of delivering oral health advice from dental teams, parents' and children's experiences, to identify and inform practical recommendations for clinical practice. Method: The current paper used a qualitative supplementary analysis to reanalyse data of existing published studies by applying a different research question. Qualitative focus groups were undertaken following a semi-structured interview guide with 27 dental team members (dentists, dental nurses, practice managers and receptionists), 37 parents and 120 children (aged 7–10 years old) in the northern region of England. Thematic analysis informed the identification of themes and aggregation of findings. Results: Three overarching themes were developed: (1) An engaging and personalised dental visit for parents and children; (2) Dental teams, parents and children working collaboratively to improve oral health habits; and (3) Recommending appropriate oral health products. Many parents and children had little recollection of any preventive oral health conversations when visiting the dentist. Practical solutions were identified by different stakeholders to facilitate three-way, personalised, non-judgemental and supportive oral health conversations. Adopting these innovative approaches will help to enable parents and their children to adopt and maintain appropriate oral health behaviours. Conclusion: Understanding the context and triangulating the experiences of stakeholders involved in preventive oral health conversations for young children is an essential step in co-designing a complex oral health intervention. This study has provided recommendations for dental practices and wider paediatric health care services. Furthermore, the findings have informed the design of a complex oral health intervention called "Strong Teeth". [ABSTRACT FROM AUTHOR]

Background: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information. Method: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis. Results: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital – a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record. Conclusions: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice. [ABSTRACT FROM AUTHOR]

Background: Active for Life Year 5 (AFLY5) is an educational programme for Year 5 children (aged 9-10) designed to increase children's physical activity, decrease sedentary behaviour and increase fruit and vegetable intake. This paper reports findings from a process evaluation embedded within a randomised controlled trial evaluating the programme's effectiveness. It considers the fidelity of implementation of AFLY5 with a focus on three research questions: 1. To what extent was the intervention delivered as planned? 2. In what ways, if any, did the teachers amend the programme? and 3. What were the reasons for any amendments? Methods: Mixed methods were used including data collection via observation of the intervention delivery, questionnaire, teacher's intervention delivery log and semi-structured interviews with teachers and parents. Qualitative data were analysed thematically and quantitative data were summarised using descriptive statistics. Results: Following training, 42 of the 43 intervention school teachers/teaching staff (98 %) were confident they could deliver the nutrition and physical activity lessons according to plan. The mean number of lessons taught was 12.3 (s.d. 3.7), equating to 77 % of the intervention. Reach was high with 95 % of children in intervention schools receiving lessons. A mean of 6.2 (s.d. 2.6) out of 10 homeworks were delivered. Median lesson preparation time was 10 min (IQR 10-20) and 28 % of lessons were reported as having been amended. Qualitative findings revealed that those who amended the lessons did so to differentiate for student ability, update them for use with new technologies and to enhance teacher and student engagement. Teachers endorsed the aims of the intervention, but some were frustrated with having to adapt the lesson materials. Teachers also a reported tendency to delegate the physical activity lessons to other staff not trained in the intervention. Conclusions: Fidelity of intervention implementation was good but teachers' enthusiasm for the AFLY5 programme was mixed despite them believing that the messages behind the lessons were important. This may have meant that the intervention messages were not delivered as anticipated and explain why the intervention was found not to be effective. Trial registration: ISRCTN50133740. [ABSTRACT FROM AUTHOR]

Background: Personalised Care and Support Planning (PCSP) replaces conventional annual reviews for people with long-term conditions. It is designed to help healthcare professionals (HCPs) and patients engage in conversations as equals and collaboratively plan actions oriented to each patient's priorities, alongside biomedical concerns. Little is known about how the shift to remote consulting initiated with COVID-19 restrictions has impacted PCSP. Aim: To investigate HCPs' experiences of conducting PCSP conversations remotely and consider implications for the fulfilment of PCSP ambitions as remote consulting continues beyond COVID-19 restrictions. Methods: 19 semi-structured interviews with HCPs in England and Scotland; interpretive analysis. Results: HCPs' accounts made clear that COVID-19 restrictions impacted multiple aspects of PCSP delivery, not just the mode of conversation. Broader disruption to general practice systems for gathering and sharing information ahead of PCSP conversations, and moves to 'wide window' appointment times, made it harder for patients to be prepared for PCSP conversations. This constrained scope to achieve PCSP ambitions even with the best professional communication skills. Most remote PCSP conversations were conducted by telephone. In the absence of visual communication with patients, it was sometimes harder to achieve the ambitions of PCSP conversations, including to balance patient and professional agendas, fulfil key planning activities, and foster a relational ethos of equal, collaborative partnership. The challenges were particularly severe when working with new patients and people with complex clinical and social problems. Although options for telephone appointments now offer valued flexibility, sustained experience of struggling to achieve PCSP ambitions via remote consulting led some HCPs to lower their standards for judging a "good" PCSP conversation, and to diminished professional satisfaction. Conclusions: There are significant challenges to fulfilling the ambitions of PCSP via telephone, especially when preparatory support is limited. This study provides grounds for scepticism about how compatible telephone appointments can be with this person-centred model of working, especially for people who are socially disadvantaged and live with complex health conditions. These threats to the provision of person-centred support for people with long-term conditions warrant careful attention going forward if the PCSP model and its benefits are to be sustained. [ABSTRACT FROM AUTHOR]

Background: Pain is often poorly managed in people who have a dementia. Little is known about how this patient population is managed in hospital, with research to date focused mainly on care homes. This study aimed to investigate how pain is recognised, assessed and managed in patients with dementia in a range of acute hospital wards, to inform the development of a decision support tool to improve pain management for this group.Methods: A qualitative, multi-site exploratory case study. Data were collected in four hospitals in England and Scotland. Methods included non-participant observations, audits of patient records, semi-structured interviews with staff and carers, and analysis of hospital ward documents. Thematic analysis was performed through the lens of decision making theory.Results: Staff generally relied on patients' self-report of pain. For patients with dementia, however, communication difficulties experienced because of their condition, the organisational context, and time frames of staff interactions, hindered patients' ability to provide staff with information about their pain experience. This potentially undermined the trials of medications used to provide pain relief to each patient and assessments of their responses to these treatments. Furthermore, given the multidisciplinary environment, a patient's communication about their pain involved several members of staff, each having to make sense of the patient's pain as in an 'overall picture'. Information about patients' pain, elicited in different ways, at different times and by different health care staff, was fragmented in paper-based documentation. Re-assembling the pieces to form a 'patient specific picture of the pain' required collective staff memory, 'mental computation' and time.Conclusions: There is a need for an efficient method of eliciting and centralizing all pain-related information for patients with dementia, which is distributed in time and between personnel. Such a method should give an overall picture of a patient's pain which is rapidly accessible to all involved in their care. This would provide a much-needed basis for making decisions to support the effective management of the pain of older people with dementia in hospital. [ABSTRACT FROM AUTHOR]

Background: Peer support is reported to be a key method to help build social capital in communities. To date there are no studies that describe how this can be achieved through a breastfeeding peer support service. In this paper we present findings from an evaluation of a voluntary model of breastfeeding peer support in North-West England to describe how the service was operationalized and embedded into the community. This study was undertaken from May, 2012 to May, 2013. Methods: Interviews (group or individual) were held with 87 participants: 24 breastfeeding women, 13 peer supporters and 50 health and community professionals. The data contained within 23 monthly monitoring reports (January, 2011 to February 2013) compiled by the voluntary peer support service were also extracted and analysed. Results: Thematic analysis was undertaken using social capital concepts as a theoretical lens. Key findings were identified to resonate with 'bonding', 'bridging' and 'linking' forms of social capital. These insights illuminate how the peer support service facilitates 'bonds' with its members, and within and between women who access the service; how the service 'bridges' with individuals from different interests and backgrounds, and how 'links' were forged with those in authority to gain access and reach to women and to promote a breastfeeding culture. Some of the tensions highlighted within the social capital literature were also identified. Conclusions: Horizontal and vertical relationships forged between the peer support service and community members enabled peer support to be embedded into care pathways, helped to promote positive attitudes to breastfeeding and to disseminate knowledge and maximise reach for breastfeeding support across the community. Further effort to engage with those of different ethnic backgrounds and to resolve tensions between peer supporters and health professionals is warranted. [ABSTRACT FROM AUTHOR]

Introduction: Barcode medication administration (BCMA) technology helps ensure correct medications are administered by nursing staff through scanning of patient and medication barcodes. In many hospitals scanning rates are low, limiting the potential safety benefits. We aimed to explore the barriers and facilitators to BCMA use in a London hospital. Methods: In this mixed methods study we used local quantitative data on BCMA scanning rates to identify clinically similar wards (in terms of patient acuity and workload) with different scanning rates for qualitative exploration. Interviews designed to elicit barriers to using BCMA technology were conducted with nursing staff, supported by observations of medication administration. Qualitative data were analysed inductively and a thematic framework constructed housing key themes, subsequently categorised into barriers and facilitators. To explore patient perspectives of BCMA scanning, a purposive sample of patients were also interviewed. These patient data were analysed deductively according to the thematic framework. Themes were mapped to behavioural science frameworks to further understand the behaviours involved. Results: BCMA was operational on 15 wards, with only six having medication scan rates of more than 10% of scannable doses. Of three wards selected for qualitative investigation, the lowest scan rate was 6.7%. Twenty-seven nurses and 15 patients were interviewed. Eleven key themes were identified, encompassing both barriers and facilitators to BCMA use. Barriers included poor trolley ergonomics and perceived time inefficiency. Facilitators included a streamlined process and thorough training. All nurses described BCMA as positive for patient safety. Patients described BCMA as making them "feel safer". Behavioural science frameworks highlighted the importance of professional role and an individual's belief in their capability. Conclusion: We present a novel exploration of facilitators and barriers to BCMA use from the viewpoint of both patients and nursing staff, highlighting a strong perception that BCMA enhances safety. Barriers were reported on both high and low usage wards, demonstrating the importance of behaviours and motivations. These findings provide a detailed understanding from which to design interventions to support behaviour change and increase BCMA use. [ABSTRACT FROM AUTHOR]

Background: Recent end of life care policy prioritises patient choice over place of care and in particular promotes dying at home. This policy is predicated on the assumption that there are family carers able and willing to provide care for the dying person. Through the accounts of bereaved family members, the 'Unpacking the home' study aims to gain an in-depth understanding of 'home' and the issues faced by family members caring for a dying older person at home; it also aims to examine the way the home is transformed in the process of providing end of life care, and offer a critical analysis of policies that aim to increase home deaths. This paper presents the protocol for this study. Methods/design: A cross-sectional qualitative study has been designed to achieve the study aims. In-depth interviews will be conducted in the north and south of England with 50 bereaved family carers to elicit their accounts of witnessing the dying in the home of an older person (50+ years). All interviews will be subjected to thematic analysis, and narrative analysis will be undertaken on a subset of 30 interview transcripts. A final phase of integration and policy analysis will be conducted towards the end of the study. User involvement is integral to this study, with service users actively engaged at every stage. Discussion: This study will seek to take a qualitative approach by explicitly recognising that family carers are central to the experience of dying at home for older people, and they have needs that may be amenable to support and anticipatory planning. The strengths of this study, which include its interdisciplinary and participatory approach, and in-depth data collection and analysis methods, will be explored. The limitations and challenges of this research will also be considered. This study seeks to make recommendations that will ensure that family carers receive appropriate and adequate support in caring for their loved ones at the end of life. [ABSTRACT FROM AUTHOR]

Background: There is limited evidence on what shapes the acceptability of population level dietary and active-travel policies in England. This information would be useful in the decision-making process about which policies should be implemented and how to increase their effectiveness and sustainability. To fill this gap, we explored public and policymakers' views about factors that influence public acceptability of dietary and active-travel policies and how to increase public acceptability for these policies. Methods: We conducted online, semi-structured interviews with 20 members of the public and 20 policymakers in England. A purposive sampling frame was used to recruit members of the public via a recruitment agency, based on age, sex, socioeconomic status and ethnicity. Policymakers were recruited from existing contacts within our research collaborations and via snowball sampling. We explored different dietary and active-travel policies that varied in their scope and focus. Interviews were transcribed verbatim and analysed using thematic reflexive analysis with both inductive and deductive coding. Results: We identified four themes that informed public acceptability of dietary and active-travel policies: (1) perceived policy effectiveness, i.e., policies that included believable mechanisms of action, addressed valued co-benefits and barriers to engage in the behaviour; (2) perceived policy fairness, i.e., policies that provided everyone with an opportunity to benefit (mentioned only by the public), equally considered the needs of various population subgroups and rewarded 'healthy' behaviours rather than only penalising 'unhealthy' behaviours; (3) communication of policies, i.e., policies that were visible and had consistent and positive messages from the media (mentioned only by policymakers) and (4) how to improve policy support, with the main suggestion being an integrated strategy addressing multiple aspects of these behaviours, inclusive policies that consider everyone's needs and use of appropriate channels and messages in policy communication. Conclusions: Our findings highlight that members' of the public and policymakers' support for dietary and active-travel policies can be shaped by the perceived effectiveness, fairness and communication of policies and provide suggestions on how to improve policy support. This information can inform the design of acceptable policies but can also be used to help communicate existing and future policies to maximise their adoption and sustainability. [ABSTRACT FROM AUTHOR]

Background: Current health policy focuses on improving accessibility, increasing integration and shifting resources from hospitals to community and primary care. Initiatives aimed at achieving these policy aims have supported the implementation of various 'new models of care', including general practice offering 'additional availability' appointments during evenings and at weekends. In Greater Manchester, six 'demonstrator sites' were funded: four sites delivered additional availability appointments, other services included case management and rapid response. The aim of this paper is to explore the factors influencing the implementation of services within a programme designed to improve access to primary care. The paper consists of a qualitative process evaluation undertaken within provider organisations, including general practices, hospitals and care homes. Methods: Semi-structured interviews, with the data subjected to thematic analysis. Results: Ninety-one people participated in interviews. Six key factors were identified as important for the establishment and running of the demonstrators: information technology; information governance; workforce and organisational development; communications and engagement; supporting infrastructure; federations and alliances. These factors brought to light challenges in the attempt to provide new or modify existing services. Underpinning all factors was the issue of trust; there was consensus amongst our participants that trusting relationships, particularly between general practices, were vital for collaboration. It was also crucial that general practices trusted in the integrity of anyone external who was to work with the practice, particularly if they were to access data on the practice computer system. A dialogical approach was required, which enabled staff to see themselves as active rather than passive participants. Conclusions: The research highlights various challenges presented by the context within which extended access is implemented. Trust was the fundamental underlying issue; there was consensus amongst participants that trusting relationships were vital for effective collaboration in primary care. [ABSTRACT FROM AUTHOR]

Background: Dementia leads to multiple issues including difficulty in communication and increased need for care and support. Discussions about the future often happen late or never, partly due to reluctance or fear. In a sample of people living with dementia and carers, we explored their views and perceptions of living with the condition and their future. Methods: Semi-structured interviews were conducted in 2018-19 with 11 people living with dementia and six family members in England. Interviews were audio-recorded, transcribed and analysed using reflexive thematic analysis. Results: Findings were explored critically within the theory of social death and three themes were developed: (1) loss of physical and cognitive functions, (2) loss of social identity, and (3) social connectedness. Most participants living with dementia and carers wanted to discuss the present, rather than the future, believing a healthy lifestyle would prevent the condition from worsening. Those with dementia wanted to maintain control of their lives and demonstrated this by illustrating their independence. Care homes were often associated with death and loss of social identity. Participants used a range of metaphors to describe their dementia and the impact on their relationships and social networks. Conclusion: Focusing on maintaining social identity and connectedness as part of living well with dementia may assist professionals in undertaking advance care planning discussions. [ABSTRACT FROM AUTHOR]

Background: Clinical scholarship has been conceptualised and theorised in the nursing literature for over 30 years but no research has captured nurses' clinicians' views on how it differs or is the same as clinical expertise and clinical leadership. The aim of this study was to determine clinical nurses' understanding of the differences and similarities between the clinical expert, clinical leader and clinical scholar. Methods: A descriptive interpretative qualitative approach using semi-structured interviews with 18 practising nurses from Australia, Canada and England. The audio-taped interviews were transcribed and the text coded for emerging themes. The themes were sorted into categories of clinical expert, clinical leader and clinical scholarship as described by the participants. These themes were then compared and contrasted and the essential elements that characterise the nursing roles of the clinical expert, clinical leader and clinical scholar were identified. Results: Clinical experts were seen as linking knowledge to practice with some displaying clinical leadership and scholarship. Clinical leadership is seen as a positional construct with a management emphasis. For the clinical scholar they linked theory and practice and encouraged research and dissemination of knowledge. Conclusion: There are distinct markers for the roles of clinical expert, clinical leader and clinical scholar. Nurses working in one or more of these roles need to work together to improve patient care. An 'ideal nurse' may be a blending of all three constructs. As nursing is a practice discipline its scholarship should be predominantly based on clinical scholarship. Nurses need to be encouraged to go beyond their roles as clinical leaders and experts to use their position to challenge and change through the propagation of knowledge to their community. [ABSTRACT FROM AUTHOR]

Background: Domestic violence and abuse (DVA) is common and damaging to health. UK national guidance advocates a multi-agency response to DVA, and domestic homicide reviews consistently recommend improved information-sharing between agencies. Identification of patients experiencing DVA in general practice may come from external information shared with the practice, such as police incident reports and multi-agency risk assessment conference (MARAC) reports. The aim of this study was to explore the views of general practitioners (GPs) and the police about sharing reports about DVA with GPs. Methods: Qualitative semi-structured interviews were conducted with GPs, police staff and a partnership manager. Participants were located across England and Wales. Thematic analysis was undertaken. Results: Interviews were conducted with 23 GPs, six police staff and one former partnership manager. Experiences of information-sharing with GPs about DVA varied. Participants described the relevance and value of external reports to GPs to help address the health consequences of DVA and safeguard patients. They balanced competing priorities when managing this information in the electronic medical record, namely visibility to GPs versus the risk of unintended disclosure to patients. GPs also spoke of the judgements they made about exploring DVA with patients based on external reports, which varied between abusive and non-abusive adults and children. Some felt constrained by short general practice consultations. Some police and GPs reflected on a loss of control when information about DVA was shared between agencies, and the risk of unintended consequences. Both police and GPs highlighted the importance of clear information and a shared understanding about responsibility for action. Conclusion: GPs regarded external reports about DVA as relevant to their role, but safely recording this information in the electronic medical record and using it to support patients required complex judgements. Both GPs and police staff emphasised the importance of clarity of information and responsibility for action when information was shared between agencies about patients affected by DVA. [ABSTRACT FROM AUTHOR]

Background: Distress is an expected emotional response to a negative life event. Experiences common in later life may trigger distress such as bereavement or loss of physical mobility. Distress is considered to be distinct to anxiety and/or depression and is not diagnostically labelled as a mental health problem. Older adults will often manage their own distress. Previous literature has focused on how younger adults self-manage mental health problems, however little research has explored the self-management strategies used by older people. There is a need to clarify the role of primary care in the context of distressed older adults who may consult healthcare services. This study seeks to address these gaps through qualitative methods. Methods: Keele University's ethical review panel approved this study. We recruited older adults who self-identified as distressed from community groups in North Staffordshire, England. Data were generated through semi-structured interviews and analysed thematically using constant comparison methods. A patient and public involvement and engagement group contributed to development of the research questions and methods, and offered their perspectives on the findings. Results: After 18 interviews data saturation was achieved. Key themes were: experiences of distress, actions taken, help-seeking from healthcare services and perceptions of treatments offered in primary care. Various forms of loss contributed to participants' distress. Participants initiated their own self-management strategies which included: pursuing independent activities, seeking social support and attending community groups and church. Five participants reported having consulted a GP when distressed but described a lack of acceptable treatments offered. Conclusions: To support older adults who are distressed, healthcare professionals in primary care should consider exploring how patients currently manage their mood problems, provide a broad range of information about potential management options and consider sign-posting older adults to community resources. [ABSTRACT FROM AUTHOR]

Background: Antimicrobial resistance (AMR) is high on the UK public health policy agenda, and poses challenges to patient safety and the provision of health services. Widespread prescribing of antibiotics is thought to increase AMR, and mostly takes place in primary medical care. However, prescribing rates vary substantially between general practices. The aim of this study was to understand contextual factors related to general practitioners' (GPs) antibiotic prescribing behaviour in low, high, and around the mean (medium) prescribing primary care practices. Methods: Qualitative semi-structured interviews were conducted with 41 GPs working in North-West England. Participants were purposively sampled from practices with low, medium, and high antibiotic prescribing rates adjusted for the number and characteristics of patients registered in a practice. The interviews were analysed thematically. Results: This study found that optimizing antibiotic prescribing creates tensions for GPs, particularly in doctor-patient communication during a consultation. GPs balanced patient expectations and their own decision-making in their communication. When not prescribing antibiotics, GPs reported the need for supportive mechanisms, such as regular practice meetings, within the practice, and in the wider healthcare system (e.g. longer consultation times). In low prescribing practices, GPs reported that increasing dialogue with colleagues, having consistent patterns of prescribing within the practice, supportive practice policies, and enough resources such as consultation time were important supports when not prescribing antibiotics. Conclusions: Insight into GPs' negotiations with patient and public health demands, and consistent and supportive practice-level policies can help support prudent antibiotic prescribing among primary care practices. [ABSTRACT FROM AUTHOR]

Background: The benefit of a "diagnosis" of pre-diabetes in very elderly patients is debated. How clinicians manage pre-diabetic blood results in these patients is unknown. This study aims to understand how clinicians are "diagnosing" older patients with pre-diabetic blood parameters. Methods: Semi-structured interviews and focus groups with health care staff (24 total participants) were conducted in the north of England. Interviews and focus groups were recorded, transcribed and analysed thematically. A grounded theory approach was taken with the theory of candidacy being used as a sensitising concept through which questions were framed and results interpreted. Results: There is a complex system of competing pressures that influence a clinician in deciding whether, and in what way, to inform a very elderly patient that they have pre-diabetes. The majority of clinicians adjust their management of pre-diabetes to the age and perceived risk/benefit for the patient. Whilst some clinicians choose not to inform certain patients of their blood results, many clinicians maintain, what could be seen as a somewhat paradoxical approach of labeling all older patients with pre-diabetes but downplaying the significance to the patient. The policy, organisational context, workload and professional constraints under which clinicians work, play a significant role in shaping how they deal with pre-diabetic blood results in the very elderly. Conclusion: There has been recent acknowledgement of how policy and organisational context frames decision-making, but there is a lack of evidence on how this influences uncertainty and dilemmas in decision-making in practice. These findings add further weight for the argument that treatment burden should be included in clinical guidelines. [ABSTRACT FROM AUTHOR]

Background: The role of the school nurse is complex with many possible elements identified by previous research. The aim of this study is to understand perceptions of the role of the school nurse in order to support school nurses in the delivery of health education. Methods: The study used an inductive, qualitative research design involving semi-structured interviews and focus groups. Participants were recruited from four NHS trusts across England and final sample size was thirty one school nurses. Three focus groups and two interviews took place in person, and three interviews were over the phone. Data was thematically analysed. Results: School nurses described six main themes. Four themes directly related to the school nurse role: the main roles of a school nurse, school nurses' role in health education, prioritisation of workload and activities, and community work. A further two other themes related to the delivery of health education: the school nursing system and educational resources. Conclusions: The role of the school nurse in England is very diverse and the school nurse role in health education is primarily to advise and support schools, rather than to directly deliver education. The study identified that tailored public health educational resources are needed to support school nurses. [ABSTRACT FROM AUTHOR]

Background: Human papillomavirus (HPV) is sexually transmitted and has been conclusively linked to cervical cancer and genital warts. Cervical cancer is attributed to approximately 1100 deaths annually in UK, and is the second most common female cancer globally. It has been suggested that black African women are more predisposed to HPV infection and cervical cancer. A vaccine has been developed to reduce HPV infection, and in the UK, has been offered to 12-13 year old adolescent girls through schools as part of their childhood immunization programme since 2008. Upon programme initiation, it was noted that vaccine uptake was lower in schools where girls from ethnic minority groups were proportionately higher. The study's objectives were to explore factors influencing UK based African parents' acceptance or decline of the HPV vaccine, whether fathers and mothers share similar views pertaining to vaccination and any interfamily tensions resulting from differing views. Methods: A qualitative study was conducted with five African couples residing in north England. Face to face semi- structured interviews were carried out. Participants were parents to at least one daughter aged between 8 and 14 years. Recruitment was done through purposive sampling using snowballing. Results: HPV and cervical cancer awareness was generally low, with awareness lower in fathers. HPV vaccination was generally unacceptable among the participants, with fear of promiscuity, infertility and concerns that it'ss t i l lan e w vaccine with yet unknown side effects cited as reasons for vaccine decline. There was HPV risk denial as religion and good cultural upbringing seemed to result in low risk perceptions, with HPV and cervical cancer generally perceived as a white person's disease. Religious values and cultural norms influenced vaccine decision-making, with fathers acting as the ultimate decision makers. Current information about why the vaccine is necessary was generally misunderstood. Conclusion: Tailored information addressing religious and cultural concerns may improve vaccine acceptability in African parents. [ABSTRACT FROM AUTHOR]

Background: Previous research has highlighted that many GPs lack the confidence and knowledge to diagnose and manage people with CFS/ME. Following the development of an online training module for GPs, and an information pack and DVD for patients, this study explored the extent to which these resources can be implemented in routine primary care. Methods: Semi structured qualitative interviews were completed with patients and GPs across North West England. All interviews were transcribed and analysed using open exploratory thematic coding. Following this thematic analysis, the authors conducted a further theory-driven analysis of the data guided by Normalisation Process Theory. Results: When used in line with advice from the research team, the information resource and training were perceived as beneficial to both patients and GPs in the diagnosis and management of CFS/ME. However, 47 % of patients in this study did not receive the information pack from their GP. When the information pack was used, it was often incomplete, sent in the post, and GPs did not work with patients to discuss the materials. Only13 out of 21 practices completed the training module due to time pressures and the low priority placed on low prevalence, contentious, hard to manage conditions. When the module was completed, many GPs stated that it was not feasible to retain the key messages as they saw so few patients with the condition. Due to the complexity of the condition, GPs also believed that the diagnosis and management of CFS/ME should take place in a specialist care setting. Conclusion: While barriers to the implementation of training and resources for CFS/ME remain, there is a need to support CFS/ME patients to access reliable, evidence based information outside primary care. Our findings suggest that future research should develop an online resource for patients to support self-management. [ABSTRACT FROM AUTHOR]

Background: The rising volume of referrals to secondary care is a continuing concern in the NHS in England, with considerable resource implications. Referral management centres (RMCs) are one of a range of initiatives brought in to curtail this rise, but there is currently limited evidence for their effectiveness, and little is known about their mechanisms of action. This study aimed to gain a better understanding of how RMCs operate and the factors contributing to the achievement of their goals. Drawing on the principles of realist evaluation, we sought to elicit programme theories (the ideas and assumptions about how a programme works) and to identify the key issues to be considered when establishing or evaluating such schemes. Methods: Qualitative study with a purposive sample of health professionals and managers involved in the commissioning, set-up and running of four referral management centres in England and with GPs referring through these centres. Semi-structured interviews were conducted with 18 participants. Interviews were audio-recorded and transcribed. Data were analysed thematically. Results: Interview data highlighted the diverse aims and functions of RMCs, reflecting a range of underlying programme theories. These included the overarching theory that RMCs work by ensuring the best use of limited resources and three sub-theories, relating to how this could be achieved, namely, improving the quality of referrals and patient care, reducing referrals, and increasing efficiency in the referral process. The aims of the schemes, however, varied between sites and between stakeholders, and evolved significantly over time. Three themes were identified relating to the context in which RMCs were implemented and managed: the impact of practical and administrative difficulties; the importance and challenge of stakeholder buy-in; and the dependence of perceived effectiveness on the aims and priorities of the scheme. Many RMCs were described as successful by those involved, despite limited evidence of reduced referrals or cost-savings. Conclusions: The findings of this study have a number of implications for the development of similar schemes, with respect to the need to ensure clarity of aims and to identify indicators of success from the outset, to anticipate scheme evolution and plan for potential changes with respect to IT systems and referral processes. Also identified, is the need for further research that evaluates the effectiveness and cost effectiveness of particular models of RMC. [ABSTRACT FROM AUTHOR]

Background: Chlamydia trachomatis remains a significant public health problem. We used a complex intervention, with general practice staff, consisting of practice based workshops, posters, computer prompts and testing feedback and feedback to increase routine chlamydia screening tests in under 25 year olds in South West England. We aimed to evaluate how intervention components were received by staff and to understand what determined their implementation into ongoing practice. Methods: We used face-to-face and telephone individual interviews with 29 general practice staff analysed thematically within a Normalisation Process Theory Framework which explores: 1. Coherence (if participants understand the purpose of the intervention); 2. Cognitive participation (engagement with and implementation of the intervention); 3. Collective action (work actually undertaken that drives the intervention forwards); 4. Reflexive monitoring (assessment of the impact of the intervention). Results: Our results showed coherence as all staff including receptionists understood the purpose of the training was to make them aware of the value of chlamydia screening tests and how to increase this in their general practice. The training was described by nearly all staff as being of high quality and responsible for creating a shared understanding between staff of how to undertake routine chlamydia screening. Cognitive participation in many general practice staff teams was demonstrated through their engagement by meeting after the training to discuss implementation, which confirmed the role of each staff member and the use of materials. However several participants still felt unable to discuss chlamydia in many consultations or described sexual health as low priority among colleagues. National targets were considered so high for some general practice staff that they didn't engage with the screening intervention. Collective action work undertaken to drive the intervention included use of computer prompts which helped staff remember to make the offer, testing rate feedback and having a designated lead. Ensuring patients collected samples when still in the general practice was not attained in most general practices. Reflexive monitoring showed positive feedback from patients and other staff about the value of screening, and feedback about the general practices testing rates helped sustain activity. Conclusions: A complex intervention including interactive workshops, materials to help implementation and feedback can help chlamydia screening testing increase in general practices. [ABSTRACT FROM AUTHOR]

Background: Effective recruitment is an essential element of successful research but notoriously difficult to achieve. This article examines health care professionals' views on the factors influencing decision-making regarding referral to a stroke rehabilitation trial.Methods: Semi-structured interviews and a card-sorting task were undertaken with stroke service staff in acute and community hospital trusts. Data analysis used a thematic framework approach.Results: Twenty-seven qualified health care professionals from 12 (6 acute and 6 community) hospital trusts and one charity participated. Four main factors emerged: patient-related, professional views, the organisation and research logistics, which all contributed to staff's decision about whether to refer patients to a trial. Clinicians identified patient-related factors as the most frequent influence and considered themselves the patients' advocate. They used their knowledge of the patient to anticipate the patients' reaction to possible participation and tended to only refer those whom they perceived would respond positively. Participants also identified experience of research, a sense of ownership of the project and a positive view of the intervention being evaluated as factors influencing referral. The need to prioritise clinical matters, meet managerial demands and cope with constant change were organisational factors impacting negatively on referral. Staff often simply forgot about recruitment in the face of other higher priorities. Quick, simple, flexible research processes that were closely aligned with existing ways of working were felt to facilitate recruitment.Conclusions: Patient- and professional-related factors were the most frequent influence on clinicians' recruitment decisions, which often had a 'gate-keeping' effect. Managerial and clinical responsibility to juggle multiple (often higher) priorities was also an important factor. To facilitate recruitment, researchers need to develop strategies to approach potential participants as directly as possible to enable them to make their own decisions about participation; ensure that research processes are as quick and simple as possible; align with existing clinical pathways and systems; and give regular reminders and ongoing support to promote recruitment.Trial Registration: ISRCTN, 98287938 . Registered 6 May 2015. [ABSTRACT FROM AUTHOR]

Background: Traditional randomised controlled trials evaluating the effect of educational interventions in general practice may produce biased results as participants know they are being evaluated. We aimed to explore the acceptability of a McNulty-Zelen Cluster Randomised Control Trial (CRT) design which conceals from educational participants that they are in a RCT. Consent is obtained from a trusted third party considered appropriate to give consent on participants' behalf, intervention practice staff then choose whether to attend the offered education as would occur with normal continuing professional development. Methods: We undertook semi structured telephone interviews in England with 16 general practice (GP) staff involved in a RCT evaluating an educational intervention aimed at increasing chlamydia screening tests in general practice using the McNulty-Zelen design, 4 Primary Care (PC) Research Network officers, 5 Primary Care Trust leads in Public or sexual health, and one Research Ethics committee Chair. Interviews were undertaken by members of the original intervention evaluation McNulty-Zelen design RCT study team. These experienced qualitative interviewers used an agreed semi-structured interview schedule and were careful not to lead the participants. To further mitigate against bias, the data analysis was undertaken by a researcher (CR) not involved in the original RCT. Results: We reached data saturation and found five main themes; Support for the design: All found the McNulty-Zelen design acceptable because they considered that it generated more reliable evidence of the value of new educational interventions in real life GP settings. Lack of familiarity with study design: The design was novel to all. GP staff likened the evaluation using the McNulty-Zelen design to audit of their activities with feedback, which were to them a daily experience and therefore acceptable. Ethical considerations: Research stakeholders considered the consent procedure should be very clear and that these trial designs should go through at least a proportionate ethical review. GP staff were happy for the PCT leads to give consent on their behalf. GP research capacity and trial participation: GP staff considered the design increased generalisability, as staff who would not normally volunteer to participate in research due to perceived time constraints and paperwork might do so. Design 'worth it': All interviewees agreed that the advantages of the "more accurate" or "truer" results and information gained about uptake of workshops within Primary Care Trusts (PCTs) outweighed any disadvantages of the consent procedure. Discussion: Our RCT was evaluating the effect of an educational intervention to increase chlamydia screening tests in general practices where there was routine monitoring of testing rates; our participants may have been less enthusiastic about the design if it had been evaluating a more controversial educational area, or if data monitoring was not routine. Implications: The McNulty-Zelen design should be considered for the evaluation of educational interventions, but these designs should have clear consent protocols and proportionate ethical review. Trial registration: The trial was registered on the UK Clinical Research Network Study Portfolio database. UKCRN9722. [ABSTRACT FROM AUTHOR]

Background: There is an increasing international policy direction to promote home death for dying patients which will impact on the demands placed on family carers. The early identification of carer needs and appropriate intervention can help avoid crisis situations for the carer and avoidable hospital admissions which are reported to be a global concern. The aim of the study was to explore what professionals and carers of patients with cancer and advanced progressive illness, in their last year of life, find burdensome and to develop an alert system for use by non-specialist staff. Methods: A mixed-method, multi-phased, consensus study sequentially utilising qualitative and quantitative data to develop and pilot the Carers' Alert Thermometer (CAT). 245 people (117 carers and 128 professionals) participated in the study across a range of health and social care settings in the North West of England (2011-2014). Results: A number of key domains were identified and prioritised by consensus for inclusion in the CAT. The 8 domains fit within two overarching themes of the reported carer experience; the support needed by the carer to provide care and the support needed for the carer's own health and well-being. The resultant CAT is an evidence-based alert thermometer consisting of 10 questions, guidance on the possible actions for each alert and space for an action plan to be jointly agreed by the assessor and carer. Preliminary piloting of the CAT has shown it to be valued, fit for purpose and it can be administered by a range of personnel. Conclusions: The CAT enables the identification of current and potential future needs so a proactive approach can be taken to supporting the carer as their role develops over time, with a view to enhancing their well-being and preventing avoidable hospital admissions; ultimately supporting patient choice to remain in their own home. [ABSTRACT FROM AUTHOR]

Background: Patients with comorbid depression and physical health problems have poorer outcomes compared with those with single long term conditions (LTCs), or multiple LTCs without depression. Primary care has traditionally struggled to provide integrated care for this group. Collaborative care can reduce depression in people with LTCs but evidence is largely based on trials conducted in the United States that adopted separate treat to target protocols for physical and mental health. Little is known about whether collaborative care that integrates depression care within the management of LTCs is implementable in UK primary care, and acceptable to patients and health care professionals. Methods: Nested interview study within the COINCIDE trial of collaborative care for patients with depression and diabetes/CHD (ISRCTN80309252). The study was conducted in primary care practices in North West England. Professionals delivering the interventions (nurses, GPs and psychological well-being practitioners) and patients in the intervention arm were invited to participate in semi-structured qualitative interviews. Results: Based on combined thematic analysis of 59 transcripts, we identified two major themes: 1) Integration: patients and professionals valued collaborative ways of working because it enhanced co-ordination of mental and physical health care and provided a sense that patients' health was being more holistically managed. 2) Division: patients and professionals articulated a preference for therapeutic and spatial separation between mental and physical health. Patients especially valued a separate space outside of their LTC clinic to discuss their emotional health problems. Conclusion: The COINCIDE care model, that sought to integrate depression care within the context of LTC management, achieved service level integration but not therapeutic integration. Patients preferred a protected space to discuss mental health issues, and professionals maintained barriers around physical and mental health expertise. Findings therefore suggest that in the context of mental-physical multimorbidity, collaborative care can facilitate access to depression care in ways that overcome stigma and enhance the confidence of multidisciplinary health teams to work together. However, such care models need to be flexible and patient centred to accommodate the needs of patients for whom their depression may be independent of their LTC. [ABSTRACT FROM AUTHOR]

Background: Like any other form of healthcare, acupuncture takes place in a particular context which can enhance or diminish treatment outcomes (i.e. can produce contextual effects). Patients' expectations of acupuncture might be an important component of contextual effects, but we know relatively little about the origins and nature of patients' expectations or wider preconceptions about acupuncture. Our aim was to identify the processes the underpin patients' decisions to try acupuncture and thus begin to tease out the origins and nature of patients' preconceptions. Methods: One-off semi-structured interviews were conducted with a purposive, varied sample of 35 adults who had tried acupuncture for various conditions. Interviews explored people's experiences of acupuncture treatment and techniques from framework and inductive thematic analysis were used to relate the data to the research question. Results: We identified four distinct processes within participants' accounts of deciding to try acupuncture: establishing a need for treatment, establishing a need for a new treatment, deciding to try acupuncture, and finding an acupuncturist. Family, friends and health care professionals played a role in these processes, providing support, advice, and increasing people's general familiarity with acupuncture. When they came to their first acupuncture appointment, participants had hopes, concerns, and occasionally concrete expectations as to the nature of acupuncture treatment and its likely effects. Conclusions: Existing theories of how context influences health outcomes could be expanded to better reflect the psychological components identified here, such as hope, desire, optimism and open-mindedness. Future research on the context of acupuncture should consider these elements of the pre-treatment context in addition to more established components such as expectations. There appears to be a need for accessible (i.e. well-disseminated), credible, and individualised, patient-centred materials that can allay people's concerns about the nature of acupuncture treatment and shape realistic hopes and expectations. [ABSTRACT FROM AUTHOR]

Background: Integrative medicine (IM) is currently the most commonly used term to describe the integration of complementary and alternative medicine (CAM) into conventional medicine. In the definitions of IM the most important feature is the focus on evidence as crucial factor for therapeutic decision-making. However, there are discussions on the term “integrative medicine” with the most notable critique from within CAM that it describes the integration of complementary methods into conventional institutions and into a “conventional framework of thinking”. The aim of this qualitative study was to understand the thoughts of leading experts on IM and on the scientific debate in the field as well as their personal opinions about terminology in general.Methods: We have conducted semi-standardized interviews with ten leading experts in the field of CAM and integrative medicine in the USA, England, and Germany, who have had leading positions at medical schools or the NIH in 2010 and 2011. Interviews were recorded, transcribed and analyzed using content analysis with the qualitative analysis software max qda.Results: Overall the current terminology was seen as a problem, although most experts agreed that the term“integrative medicine” (IM) described well what they do or they think is useful for medical care. The terminology debate was discussed from four perspectives: 1) from the perspective of medical practice, 2) from the perspective of research, 3) from the perspective of public relations, and 4) from the perspective of health care delivery. These perspectives may be used to evaluate the appropriateness of different terms in use in the field. When intervieweesdiscussed the terminology question, they also discussed the type of health care system they envisioned. Such reflections led the interviewees to caution about too narrow a focus on the terminology question. The question of naming was one about influencing and changing medicine.Conclusion: The discussion of the experts demonstrated that the discussion about terminology is an important debate about the shaping of medicine. The experts discussed terminology in the light of "how health care systems"should look like in the future. [ABSTRACT FROM AUTHOR]

Background: Professional autonomy is a key concept in understanding nurses' roles in delivering patient care. Recent research exploring the role of autonomy in the nursing work environment indicated that English and American nurses had differing perceptions of autonomy. This qualitative study aimed to explore the understanding and experiences of autonomy of nurses working in England. Methods: A descriptive phenomenological analysis of data from 48 semi-structured interviews with registered nurses from two National Health Service (NHS) hospitals (purposive sample) was used to explore the concept of autonomy. Results: Six themes were identified: working independently; working in a team; having professional skills and knowledge; involvement in autonomy; boundaries around autonomy; and developing autonomy requires support. A key finding was that nurses related autonomy to their clinical work and to the immediate work environment of their ward, rather than to a wider professional context. Nurses also perceived that autonomy could be turned off and on rather than comprising an integrated aspect of nursing. Conclusions: Findings suggest that nurses in England, as framed by the sample, had a local ward-focused view of autonomy in comparison to nurses in America, who were reported to relate autonomy to a wider involvement in hospital level committees. Findings further indicate that autonomy was practiced occasionally, rather than incorporated into practice. Findings highlight the need for nurses in England to adopt a broader perspective and actively contribute to writing hospital guidelines and policies that recognise the importance of autonomy to nurse training and practice. [ABSTRACT FROM AUTHOR]

Background: BATHE is a brief psychosocial intervention designed for physician use in patient consultations. The technique has gained some international recognition, but there is currently limited research evidence to demonstrate its acceptability and benefits to patient care. We conducted a pilot cluster randomised controlled trial and feasibility study to explore the use of BATHE as a key component of a person-focused intervention to improve the care of frequent attending patients in UK primary care. Methods: A nested qualitative interview study conducted within a pilot trial. The trial took place in six general practices in the South West of England. Eligible patients had been identified as being in the top 3% of attenders in the previous 12 months. General practitioners (GPs) were trained to use BATHE during a one-hour initial training session, and two top-up trainings which included feedback on implementation fidelity. GPs were asked to use BATHE with their study patients for a period of 12 months. 34 GPs were trained and documented using BATHE in a total of 577 consultations with eligible patients during the intervention period. At the end of the intervention period, GPs and study patients from the intervention practices were invited to take part in an interview. Interviews were semi-structured, audio-recorded and transcribed. Thematic analysis was used. Results: Eleven GPs and 16 patients took part in post-intervention interviews. Benefits of using BATHE included making consultations more person-centred, challenging assumptions that the GP knew what was going on for the patient and their main concerns, and supporting self-management. Difficulties reported included changing existing consultation habits, identifying appropriate consultations in which to use BATHE, and organisational constraints. Conclusions: The study suggests that using BATHE is both acceptable and beneficial but also highlighted some of the difficulties GPs had incorporating BATHE into routine practice. Strategies to reduce these difficulties are needed before the extent of the potential benefits of BATHE can be fully assessed. Trial registration: ISRCTN62939408 Prospectively registered on 24/06/2015. [ABSTRACT FROM AUTHOR]

Background: Patient-reported outcome measures (PROMs) are widely available for use in musculoskeletal care. However, there is little research exploring the implementation of PROMs in clinical practice. This qualitative study explored chiropractors' views on PROMs to identify any barriers and facilitators to implementing PROMs in chiropractic care and the training needs of chiropractors regarding the use of PROMs. Methods: A qualitative study of chiropractors' views on PROMs was undertaken as part of a larger project to address the feasibility of conducting a randomised controlled trial of PROM use in chiropractic clinics for patients with low back pain. Contact was made with chiropractors working in chiropractic companies with multiple clinic sites. Semi-structured interviews were conducted with eight chiropractors, either face-to-face at their place of work or over the telephone. The interviews were transcribed verbatim and analysed using thematic analysis. The data were coded inductively by two authors. Results: Chiropractors discussed their knowledge and engagement with PROMs in clinical practice, identifying reasons for their use, such as understanding clinic performance, clinical practice, and research. They also discussed how they used PROMs within their clinical practice and the benefits of using them with individual patients, for example during the consultation, identifying yellow flags, and tracking patient progress. Chiropractors voiced concerns about patient engagement with PROMs, questioning if patients find them burdensome, and the appropriate PROMs to use with patients with pain. Finally, chiropractors acknowledged the organisational barriers and facilitators to using PROMs within their practice, such as busy practices, electronic systems, and use of reception staff. Conclusions: Using participating chiropractors' views of PROMs, the study identified barriers and facilitators to implementing PROMs in chiropractic care, such as clinician knowledge, engagement, and organisational concerns and identified the potential training needs of chiropractors regarding PROMs. The results from the study suggested chiropractors use PROMs with their individual patients, but PROMs should be meaningful to patients and chiropractors to improve engagement. [ABSTRACT FROM AUTHOR]

Background: Anxiety and depression are common in older adults, but often under-recognised by GPs. Rather than perceiving themselves as suffering from anxiety or depression, older adults are more likely to self-identify as experiencing low mood, stress or distress. Older people may also feel responsible for managing their own mood problems. The Internet has the potential to support the self-management of distress through accessing health information or social support. Methods: This study was approved by Keele University's ethical review panel. Older adults who self-identified as experiencing distress were recruited from community groups in the West Midlands, England. To generate data, 'think-aloud' methods (including storyboards and an extract from an online forum) were embedded within semi-structured interviews. Thematic analysis, incorporating constant comparison methods, were used for data analysis. Results: Data saturation was achieved after 18 interviews. All participants reported having access to the Internet, but only a few described using the Internet to obtain general information or to conduct online purchases. Most participants described barriers to Internet use which included: a lack of interest, knowledge and confidence, a fear of technology and no trust in social media sites. Facilitators of Internet use included family encouragement and attending community groups which taught computer use. Female participants reported valuing the social contact provided by attending such groups. The Internet was seen as a source of health information once a GP had diagnosed a physical problem, but was not considered a source of information about distress or mood problems. Participants did not use the Internet to access social support and described a preference for face-to-face communication. Conclusions: GPs need to understand how an individual patient utilises the Internet. GPs should explore the self-management strategies already employed by older adults experiencing distress and understand that directing these older people to online support might not be acceptable. Encouraging distressed older adults to attend computer group classes might be useful as this permits face-to-face social contact, and may help to facilitate Internet use in the future. [ABSTRACT FROM AUTHOR]

Background: Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place. This study explored health care professionals' views and experiences of paediatric advance care planning in hospitals, community settings and hospices. Methods: A qualitative methodology was employed using purposive sampling of health care professionals involved in the end-of-life care for children aged 0–18 years known to the hospital palliative care team, and had died at least three months before, but less than 18 months prior to the study. Ethics committee approval was obtained for the study. Located in the North of England, the study involved three hospitals, a children's hospice, and community services. Data were collected using semi-structured, digitally recorded, telephone interviews. All interviews were transcribed verbatim and subjected to thematic analysis. Results: Twenty-one health care professionals participated, including generalist paediatric staff as well as specialist palliative care staff. Two themes were generated from the study: The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation. Secondly, supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families. Conclusion: The timing of when to start the advance care planning conversations remains an issue for health care professionals. The value of doing it in stages and considering the environment where the conversations are held was noted. Timely planning was seen as vital to avoid difficult conversations at a crisis point and for co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family. [ABSTRACT FROM AUTHOR]