Being a child with intellectual disabilities in hospital: The need for an individualised approach to care.

BACKGROUND: There is limited qualitative research focussed specifically on what it is like for children and young people with intellectual disabilities coming into hospital, with much of the evidence-base being about those with Autism Spectrum Condition or adults with intellectual disabilities. AIM: To share rich detail of the emotional and physical impact on children and young people with intellectual disabilities of attending hospital, from their own and their parent's perspective. METHODS: Talking Mats interviews, sticker survey and photography with children and young people with intellectual disabilities, and in-depth interviews, hospital diaries and photography with their parents. RESULTS AND CONCLUSIONS: The multiple and compounding layers of complexity surrounding hospital care of children and young people with intellectual disabilities resulted in challenges associated with loss of familiarity and routine, undergoing procedures, managing sensory overload, managing pain and having a lack of safety awareness. An individualised approach to their care is needed.

Assessing awareness of blood cancer symptoms and barriers to symptomatic presentation: measure development and results from a population survey in the UK.

BACKGROUND: Low levels of cancer awareness may contribute to delays in seeking medical help and subsequent delays in diagnosis. For blood cancer this may be a particularly prominent problem due to the high prevalence of undifferentiated symptoms such as bodily pain, weakness, nausea and weight loss, resulting in low symptom awareness. The delay is exacerbated by the dismissal of similar symptoms which are often interpreted as mild disease, resulting in multiple consultations prior to diagnosis. This study describes the development of a Cancer Awareness Measure for Blood Cancer (Blood CAM) and presents results from a population-representative survey using the measure. METHODS: A rapid systematic review identified constructs relevant to blood cancer. Items were taken from previous awareness measures and other literature and reviewed by expert groups including health care professionals and patients. Cognitive interviews were conducted with ten members of the public to check comprehension and clarity. A total sample of 434 participants completed the survey at Time 1 and n = 302 at Time 2 (two weeks later). RESULTS: Internal reliability was high across the different constructs included in the questionnaire (> 0.70) and test-retest reliability was moderate to good (0.49-0.79). The most commonly recognised blood cancer symptoms were unexplained weight loss (68.9%) and unexplained bleeding (64.9%) and the least commonly recognised symptoms were night sweats (31.3%) breathlessness and rash/itchy skin (both 44%). In terms of symptom experience, fatigue was the most commonly reported symptom (26.7%) followed by night sweats (25.4%). Exploratory factor analysis of barriers to presenting at primary care revealed three distinct categories of barriers; emotional, external/practical and service/healthcare professional related. Service and emotional barriers were most common. CONCLUSIONS: We developed a valid and reliable tool to assess blood cancer awareness and showed variable awareness of blood cancer symptoms which can help target public health campaigns. We also incorporated additional measures (e.g. confidence to re-consult, ability to understand symptoms) that could be used to tailor public messaging for blood cancer and for other harder to suspect and diagnose cancers.

The relationship between patient enablement and help-seeking in the context of blood cancer symptoms.

OBJECTIVE: Approaches to improve earlier diagnosis of cancer often focus on symptom awareness as a key driver of help-seeking behaviour and other psychological influences are less well understood. This is the first study to explore the role of patient enablement on help-seeking for people experiencing potential blood cancer symptoms. METHODS: A cross-sectional, nationally representative survey was completed by 434 respondents (>18 years). Questions asked about symptom experiences, medical help-seeking and re-consultation. Existing patient enablement items were included in the newly developed Blood Cancer Awareness Measure. We collected data on patient socio-demographic characteristics. RESULTS: Of those responding to the survey 224/434 (51.6%) reported experiencing at least one potential blood cancer symptom. Half of those experiencing symptoms (112/224) had sought medical help. Results from logistic regression analysis showed that higher scores on patient enablement were associated with being less likely to seek help (Odds Ratio [OR] 0.89, Confidence Interval [CI] 0.81-0.98) after controlling for socio-demographics. Separate analyses showed that higher enablement was associated with being more comfortable to re-consult if symptoms didn't go away or got worse (OR 1.31, CI 1.16-1.48); after a test result suggested there was nothing to worry about, but symptoms persisted (OR 1.23, CI 1.12-1.34) or to request further tests, scans or investigations (OR 1.31, CI 1.19-1.44). CONCLUSIONS: Contrary to our hypotheses, patient enablement was associated with lower likelihood of help-seeking for potential blood cancer symptoms. Yet enablement appears to play an important role in likelihood of re-consulting when symptoms persist, get worse or need further investigation.

Chaplain reported plans for end-of-life care conversations: Role clarity for the spiritual care specialists.

The present study examined chaplain reported plans for patient conversations regarding end-of-life (EOL) care through the lens of multiple goals. Chaplains (n = 69) were asked to curate a plan for engaging with a patient about EOL treatment options, including how they would engage in the conversation and what they would plan to discuss. Findings indicated that plans primarily consisted of relational and identity goals, with a majority navigating multiple goal orientations. Content overwhelmingly involved developing rapport with patients, eliciting patient preferences for care, and serving as a patient liaison. The current study addresses the paucity of research around the role a chaplain plays on the interdisciplinary team and their respective approach to EOL conversations. Examination of curated plans affords insight to what content is prioritized and which conversational goals are present. Integration of multiple goals offers preliminary evidence for conversational quality. Awareness of goal approach and content prioritized affords clarity on how chaplains can be called upon to support members of the interdisciplinary care team.

Clinician perspectives on what constitutes good practice in community services for people with complex emotional needs: A qualitative thematic meta-synthesis.

INTRODUCTION: The need to improve the quality of community mental health services for people with Complex Emotional Needs (CEN) (who may have a diagnosis of 'personality disorder') is recognised internationally and has become a renewed policy priority in England. Such improvement requires positive engagement from clinicians across the service system, and their perspectives on achieving good practice need to be understood. AIM: To synthesise qualitative evidence on clinician perspectives on what constitutes good practice, and what helps or prevents it being achieved, in community mental health services for people with CEN. METHODS: Six bibliographic databases were searched for studies published since 2003 and supplementary citation tracking was conducted. Studies that used any recognised qualitative method and reported clinician experiences and perspectives on community-based mental health services for adults with CEN were eligible for this review, including generic and specialist settings. Meta-synthesis was used to generate and synthesise over-arching themes across included studies. RESULTS: Twenty-nine papers were eligible for inclusion, most with samples given a 'personality disorder' diagnosis. Six over-arching themes were identified: 1. The use and misuse of diagnosis; 2. The patient journey into services: nowhere to go; 3. Therapeutic relationships: connection and distance; 4. The nature of treatment: not doing too much or too little; 5. Managing safety issues and crises: being measured and proactive; 6. Clinician and wider service needs: whose needs are they anyway? The overall quality of the evidence was moderate. DISCUSSION: Through summarising the literature on clinician perspectives on good practice for people with CEN, over-arching priorities were identified on which there appears to be substantial consensus. In their focus on needs such as for a long-term perspective on treatment journeys, high quality and consistent therapeutic relationships, and a balanced approach to safety, clinician priorities are mainly congruent with those found in studies on service user views. They also identify clinician needs that should be met for good care to be provided, including for supervision, joint working and organisational support.

Service user perspectives of community mental health services for people with complex emotional needs: a co-produced qualitative interview study.

BACKGROUND: There is consensus that services supporting people with complex emotional needs are part of a mental health care system in which change is needed. To date, service users' views and co-production initiatives have had little impact on the development of interventions and care. This needs to change, and our paper evidences the experiences and perspectives of a diverse range of people on how community services can best address the needs of people with complex emotional needs. METHODS: A co-produced qualitative research study. Lived experience researchers led data collection and analysis. Individual interviews were conducted with 30 people across England who had a diverse range of experiences and perspectives of using community services for complex emotional needs. Participants were asked about their experiences of using community services for their mental health, and views on how community services can best address their needs. Thematic analysis was used to analyse the data. RESULTS: Participants reported some experiences of good practice but also of experiences of severely stigmatising interventions, a lack of effective support and service fragmentation. Relational Practice was identified as the central overarching theme and describes how community services can best support people with complex emotional needs. This approach involves care delivered in a non-stigmatising, individualised and compassionate way and care that is trauma-informed. It involves care that is planned collaboratively with service users to ensure their multiple needs are addressed in a flexible, holistic and consistent way which accounts for the long-term and fluctuating nature of their needs. CONCLUSIONS: Relational practice approaches have potential to facilitate better community care for people with complex emotional needs. Research and service development are needed to examine how best to implement such approaches across the mental health service system. This work must be co-produced with people with relevant lived experience, their carers and the professionals who support them.

Sanctification of couple relationships and communal coping in married and cohabiting African American couples.

Throughout history, African Americans have endured much, and their experiences with discrimination and racism continue today. Despite ongoing challenges, African Americans have also shown their resilience. Religion and spirituality are two of the largest resources of resilience that African Americans employ. However, little is known about the role of religion and spirituality within African American couple relationships. Using dyadic data from 292 married and 233 cohabiting African American couples, we examined the impact of sanctification of the couple relationship on communal coping within the Actor Partner Interdependence Model. Significant actor effects were found between relational sanctification and communal coping for both married and cohabiting men and women. There was a significant partner effect between married men's relational sanctification and married women's communal coping. However, no other significant partner effects were found. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

A Multiple Goals Approach to Exploring Social Worker Conversational Plans for Advance Care Treatment with Terminally Ill Patients.

Social workers play an integral role in end-of-life planning and patient outcomes, and yet how social workers approach such conversations with patients is not well understood. The current study employed a cross-sectional design to examine social worker planned communication about end-of-life care using a multiple goals framework. Recruited from online listservs, a content analysis was conducted with social worker curated plans (n = 20) for end-of-life conversations. Plans were coded for topics and content alignment with instrumental, identity, and relational goal types. Topics found were related to eliciting patient goals and the utilization of written resources. A substantial percentage of social workers also noted the inclusion of other parties in the conversation. Findings suggested that content was predominately instrumental (i.e. task-oriented) with an overwhelming majority adhering to multiple conversational goals. Plan content affords insight to occupational orientation and prioritization during conversations with patients. Further, identifying how the majority of planned responses integrate multiple goals simultaneously gives credence to existing research regarding enhanced conversational effectiveness when social workers are present on the palliative care team.

Service user experiences of community services for complex emotional needs: A qualitative thematic synthesis.

BACKGROUND: There is a recognised need to develop clear service models and pathways to provide high quality care in the community for people with complex emotional needs, who may have been given a "personality disorder" diagnosis. Services should be informed by the views of people with these experiences. AIMS: To identify and synthesise qualitative studies on service user experiences of community mental health care for Complex Emotional Needs. METHODS: We searched six bibliographic databases for papers published since 2003. We included peer reviewed studies reporting data on service user experiences and views about good care from community-based mental health services for adults with CEN, including generic mental health services and specialist "personality disorder" services. Studies using any qualitative method were included and thematic synthesis used to identify over-arching themes. RESULTS: Forty-seven papers were included. Main themes were: 1) The need for a long-term perspective on treatment journeys; 2) The need for individualised and holistic care; 3) Large variations in accessibility and quality of mental health services; 4) The centrality of therapeutic relationships; 5) Impacts of 'personality disorder' diagnosis. Themes tended to recur across studies from different countries and years. DISCUSSION: Recurrent major themes included wanting support that is individualised and holistic, provides continuity over long journeys towards recovery, and that is delivered by empathetic and well-informed clinicians who are hopeful but realistic about the prospects of treatment. Care that met these simple and clearly stated priorities tended to be restricted to often limited periods of treatment by specialist "personality disorder" services: generic and primary care services were often reported as far from adequate. There is an urgent need to co-design and test strategies for improving long-term support and treatment care for people with "personality disorders" throughout the mental health care system.

Parents' responses to prognostic disclosure at diagnosis of a child with a high-risk brain tumor: Analysis of clinician-parent interactions and implications for clinical practice.

BACKGROUND: Previous studies have found that parents of children with cancer desire more prognostic information than is often given even when prognosis is poor. We explored in audio-recorded consultations the kinds of information they seek. METHODS: Ethnographic study including observation and audio recording of consultations at diagnosis. Consultations were transcribed and analyzed using an interactionist perspective including tools drawn from conversation and discourse analysis. RESULTS: Enrolled 21 parents and 12 clinicians in 13 cases of children diagnosed with a high-risk brain tumor (HRBT) over 20 months at a tertiary pediatric oncology center. Clinicians presented prognostic information in all cases. Through their questions, parents revealed what further information they desired. Clinicians made clear that no one could be absolutely certain what the future held for an individual child. Explicit communication about prognosis did not satisfy parents' desire for information about their own child. Parents tried to personalize prognostic information and to apply it to their own situation. Parents moved beyond prognostic information presented and drew conclusions, which could change over time. Parents who were present in the same consultations could form different views of their child's prognosis. CONCLUSION: Population level prognostic information left parents uncertain about their child's future. The need parents revealed was not for more such information but rather how to use the information given and how to apply it to their child in the face of such uncertainty. Further research is needed on how best to help parents deal with uncertainty and make prognostic information actionable.

Health-Care Provider Planned Responses to Patient Misunderstandings about End-of-Life Care.

This study examined health-care provider planned responses to patient misunderstandings about end-of-life care using a multiple goals framework. Plan topics and content alignment with task, identity, and relational goal types were coded. Findings suggested that content was predominately task-oriented and concerned implications of treatment options such as choice outcomes and efficacy rates. A substantial percentage of providers planned to refer further discussion about the misunderstanding to another team member or occupational resource. Despite the prompt of patient misunderstanding, little attention was given to literacy and/or avoidance of medical jargon. Implications for these findings are discussed.

Learning disability nurse provision in children's hospitals: hospital staff perceptions of whether it makes a difference.

BACKGROUND: In response to multiple United Kingdom investigations and inquiries into the care of adults with learning disabilities, Mencap produced the Getting it Right Charter which campaigned for the appointment of a Learning Disability Liaison Nurse in every hospital. More recent best practice guidelines from the Care Quality Commission included the need for all children's units to have access to a senior learning disability nurse who can support staff and help them manage difficult situations. However, little evidence exists of the extent of learning disability nurse provision in children's hospitals or the nature and impact of this role. Here we report selected findings from a national mixed methods study of hospital care for children and young people with and without learning disabilities in England. The extent of learning disability nurse provision in children's hospitals is described and perceptions of staff working in hospitals with and without such provision is compared. METHODS: Semi-structured interviews were conducted with senior staff across 15 children's hospitals and an anonymous survey was sent to clinical and non-clinical staff with patient (children and young people) contact within these hospitals. The survey focused on six different elements of care for those with and without learning disability, with additional questions concerning identifying and tracking those with learning disabilities and two open-ended questions. RESULTS: Forty-eight senior staff took part in interviews, which included a subset of nine nurses and one allied health professional employed in a dedicted learning disability nurse role, or similar. Surveys were completed by 1681, of whom 752 worked in a hospital with dedicated learning disability nurse provision. We found evidence of limited and varied learning disability nurse provision which was valued by hospital staff and shown to positively impact their perceptions of being capable to care for children and young people with learning disabilities, but not shown to increase staff perceptions of capacity or confidence, or how children and young people are valued within the hospital, their safety or access to appointments. CONCLUSION: Further consideration must be given to how learning disability nurse roles within children's hospitals are best operationalised in practice to have the greatest impact on staff and families, as well as how we monitor and evaluate them to ensure they are being utilised effectively and efficiently. TRIAL REGISTRATION: The study has been registered on the NIHR CRN portfolio 20,461 (Phase 1), 31,336 (Phases 2-4).

A mixed-methods evaluation of a Recovery College in South East Essex for people with mental health difficulties.

Recovery Colleges aim to assist people with mental health difficulties in the journey to recovery through education. They bring together professional and lived experience of mental health challenges in a non-stigmatising college environment and operate on college principles. All courses are designed to contribute towards well-being and recovery. Despite the ever-growing number of Recovery Colleges (both in the UK and internationally), the evaluative evidence is limited; comprising mostly non-peer-reviewed evaluations, audits and case studies. The present article comprises a mixed-methods evaluation of a newly established Recovery College in South East Essex, UK. The evaluation comprised questionnaires of mental well-being and social inclusion at baseline and 3 and 6 month follow-up, in addition to three focus groups. There were significant improvements in both mental well-being and social inclusion from baseline to 6 month follow-up (25 participants completed the measure of well-being at both time points and 19 completed the measure of social inclusion). This was supported by additional free-text questionnaire comments and focus group findings (17 participants participated across the focus groups), with reports of increased confidence, reduced anxiety and increased social inclusion/reduced social isolation. Additionally, at 6 month follow-up a majority of respondents were planning on attending courses external to the Recovery College, volunteering and/or gaining paid employment. Challenges and recommendations identified through the focus groups indicate the importance for standardisation of processes (which is particularly important when multiple organisations are involved in the running of a Recovery College), as well as consideration of longer-running courses. Funders should continue to invest in the Recovery College movement as the growing evidence-base is demonstrating how these colleges can help address the high prevalence of mental health difficulties, by promoting mental well-being and social inclusion.

To flag or not to flag: Identification of children and young people with learning disabilities in English hospitals.

BACKGROUND: Children and young people with learning disabilities experience poor health outcomes and lengthier hospital admissions than those without learning disabilities. No consistently applied, systematic approach exists across the NHS to identify and record this population. This paper describes practices in English hospitals to identify children and young people with learning disabilities. METHOD: Interviews: 65 NHS staff. Questionnaire: 2,261 NHS staff. Conducted across 24 NHS hospitals in England. RESULTS: No standardized approach exists to identify children or young people with a learning disability or for this information to be consistently recorded, communicated to relevant parties within a hospital, Trust or across NHS services. Staff reported a reliance on parents to inform them about their child's needs but concerns about "flagging" patients might be a significant barrier. DISCUSSION: Without an integrated systematic way across the NHS to identify children with learning disabilities, their individual needs will not be identified.

The First Isolation and Whole Genome Sequencing of Murray Valley Encephalitis Virus from Cerebrospinal Fluid of a Patient with Encephalitis.

Murray Valley Encephalitis virus (MVEV) is a mosquito-borne Flavivirus. Clinical presentation is rare but severe, with a case fatality rate of 15⁻30%. Here we report a case of MVEV from the cerebrospinal fluid (CSF) of a patient in the Northern Territory in Australia. Initial diagnosis was performed using both MVEV-specific real-time, and Pan-Flavivirus conventional, Polymerase Chain Reaction (PCR), with confirmation by Sanger sequencing. Subsequent isolation, the first from CSF, was conducted in Vero cells and the observed cytopathic effect was confirmed by increasing viral titre in the real-time PCR. Isolation allowed for full genome sequencing using the Scriptseq V2 RNASeq library preparation kit. A consensus genome for VIDRL-MVE was generated and phylogenetic analysis identified it as Genotype 2. This is the first reported isolation, and full genome sequencing of MVEV from CSF. It is also the first time Genotype 2 has been identified in humans. As such, this case has significant implications for public health surveillance, epidemiology, and the understanding of MVEV evolution.

Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study.

BACKGROUND: Children and young people (CYP) with learning disabilities (LD) are a vulnerable population with increased risk of abuse and accidental injury and whose parents have reported concerns about the quality, safety and accessibility of their hospital care. The Care Quality Commission's (CQC) view of best practice for this group of patients includes: access to senior LD nurse provision; a clearly visible flagging system for identifying them; the use of hospital passports; and defined communication strategies (Glasper, Comp Child Adolesc Nurs 40:63-67, 2017). What remains unclear is whether these recommendations are being applied and if so, what difference they are making. Furthermore, what we do not know is whether parental concerns of CYP with LD differ from parents of other children with long-term conditions. The aims of this study were to 1) describe the organisational context for healthcare delivery to CYP with LD and their families and 2) compare staff perceptions of their ability to identify the needs of CYP with and without LD and their families and provide high quality care to effectively meet these needs. METHODS: Individual interviews (n = 65) and anonymised online survey (n = 2261) were conducted with hospital staff working with CYP in 15 children's and 9 non-children's hospitals in England. The majority of interviews were conducted over the telephone and recorded and transcribed verbatim. Health Research Authority was obtained and verbal or written consent for data collection was obtained from all interview participants. RESULTS: The nature and extent of organisational policies, systems and practices in place within hospitals to support the care of CYP with LD differs across England and some uncertainty exists within and across hospitals as to what is currently available and accessed. Staff perceived that those with LD were included less, valued less, and less safe than CYP without LD. They also reported having less confidence, capability and capacity to meet the needs of this population compared to those without LD. CONCLUSION: Findings indicate inequality with regards the provision of high quality hospital care to children and young people with LD that meets their needs. There is a pressing need to understand the impact this has on them and their families. TRIAL REGISTRATION: The study has been registered on the NIHR CRN portfolio 20461 (Phase 1), 31336 (Phases 2-4).

Modulating in vitro gastric digestion of emulsions using composite whey protein-cellulose nanocrystal interfaces.

In this study, we designed emulsions with an oil-water interface consisting of a composite layer of whey protein isolate (WPI, 1wt%) and cellulose nanocrystals (CNCs) (1-3wt%). The hypothesis was that a secondary layer of CNCs at the WPI-stabilized oil-water interface could protect the interfacial protein layer against in vitro gastric digestion by pepsin at 37°C. A combination of transmission electron microscopy, ζ-potential measurements, interfacial shear viscosity measurements and theoretical surface coverage considerations suggested the presence of CNCs and WPI together at the O/W interface, owing to the electrostatic attraction between complementarily charged WPI and CNCs at pH 3. Microstructural analysis and droplet sizing revealed that the presence of CNCs increased the resistance of the interfacial protein film to rupture by pepsin, thus inhibiting droplet coalescence in the gastric phase, which occurs rapidly in an emulsion stabilized by WPI alone. It appeared that there was an optimum concentration of CNCs at the interface for such barrier effects. Sodium dodecyl sulphate polyacrylamide gel electrophoresis (SDS-PAGE) results further confirmed that the presence of 3wt% of CNCs reduced the rate and extent of proteolysis of protein at the interface. Besides, evidence of adsorption of CNCs to the protein-coated droplets to form more rigid layers, there is also the possibility that network formation by the CNCs in the bulk (continuous) phase reduced the kinetics of proteolysis. Nevertheless, structuring emulsions with mixed protein-particle layers could be an effective strategy to tune and control interfacial barrier properties during gastric passage of emulsions.

Single-stranded RNA viruses infecting the invasive Argentine ant, Linepithema humile.

Social insects host a diversity of viruses. We examined New Zealand populations of the globally widely distributed invasive Argentine ant (Linepithema humile) for RNA viruses. We used metatranscriptomic analysis, which identified six potential novel viruses in the Dicistroviridae family. Of these, three contigs were confirmed by Sanger sequencing as Linepithema humile virus-1 (LHUV-1), a novel strain of Kashmir bee virus (KBV) and Black queen cell virus (BQCV), while the others were chimeric or misassembled sequences. We extended the known sequence of LHUV-1 to confirm its placement in the Dicistroviridae and categorised its relationship to closest relatives, which were all viruses infecting Hymenoptera. We examined further for known viruses by mapping our metatranscriptomic sequences to all viral genomes, and confirmed KBV, BQCV, LHUV-1 and Deformed wing virus (DWV) presence using qRT-PCR. Viral replication was confirmed for DWV, KBV and LHUV-1. Viral titers in ants were higher in the presence of honey bee hives. Argentine ants appear to host a range of' honey bee' pathogens in addition to a virus currently described only from this invasive ant. The role of these viruses in the population dynamics of the ant remain to be determined, but offer potential targets for biocontrol approaches.

Risk Belief and Attitude Formation From Translated Scientific Messages About PFOA, an Environmental Risk Associated With Breast Cancer.

Evidence regarding possible environmental causes of breast cancer is advancing. Often, however, the public is not informed about these advances in a manner that is easily understandable. This research translates findings from biologists into messages at two literacy levels about perfluorooctanoic acid (PFOA), a possible environmental contributor to breast cancer. The Heuristic Systematic Model (HSM) was used to investigate how ability, motivation, and systematic and heuristic processing lead to risk beliefs and, ultimately, to negative attitudes for individuals receiving translated scientific messages about PFOA. Participants (N = 1,389) came from the Dr. Susan Love Research Foundation's Army of Women. Findings indicated that ability, in the form of translated messages, predicted systematic processing, operationalized as knowledge gain, which was negatively associated with formation of risk beliefs that led to negative attitudes toward PFOA. Heuristic processing cues, operationalized as perceived message quality and source credibility, were positively associated with risk beliefs, which predicted negative attitudes about PFOA. Overall, more knowledge and lower literacy messages led to lower perceived risk, while greater involvement and ratings of heuristic cues led to greater risk perceptions. This is an example of a research, translation, and dissemination team effort in which biologists created knowledge, communication scholars translated and tested messages, and advocates were participants and those who disseminated messages.

Keeping all options open: Parents' approaches to advance care planning.

BACKGROUND: Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP. OBJECTIVE: To investigate how parents of children and young people with LLCs approach and experience ACP. METHODS: Open-ended, semi-structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died. Verbatim transcripts of audiotaped interviews were analysed following principles of grounded theory while acknowledging the use of deductive strategies, taking account of both the child's condition, and the timing and nature of decisions made. RESULTS: Parents reported having discussions and making decisions about the place of care, place of death and the limitation of treatment. Most decisions were made relatively late in the illness and by parents who wished to keep their options open. Parents reported different levels of involvement in a range of decisions; many wished to be involved in decision making but did not always feel able to do so. DISCUSSION: This study highlights that parents' approaches to decision making vary by the type of decision required. Their views may change over time, and it is important to allow them to keep their options open. We recommend that clinicians have regular discussions over the course of the illness in an effort to understand parents' approaches to particular decisions rather than to drive to closure prematurely.