What are the experiences of non-invasive ventilation for sleep-disordered breathing in children and young people and what outcomes matter? Perspectives of children and young people, their parents and the staff who care for them.

BACKGROUND: Non-invasive ventilation (NIV) for sleep-disordered breathing (SDB) in children and young people (CYP) can result in multiple health outcomes; however, adherence to NIV can be challenging. Suboptimally treated SDB may increase the risk of adverse consequences. Placing children's and parents' goals at the core of their SDB treatment may support adherence to NIV. To identify these health outcomes, it is necessary to gain a greater understanding of CYP's experiences of using NIV, whether they perceive any benefits from NIV use, as well as the outcomes that their parents and NIV staff identify as important. METHODS: Semi-structured qualitative interviews were conducted with nine CYP (aged 4-16 + years), 13 parents and nine healthcare professionals (HCPs); verbatim transcripts were analysed using Framework Analysis. RESULTS: CYP predominantly reported an improvement in levels of energy, focus and ability to concentrate whereas parents also identified outcomes of mood and behaviour. The majority of children showed understanding of the reasons for being prescribed NIV. A subset of children did not notice their SDB. The health outcomes identified by HCPs and parents that could result from improved overnight gas exchange are subjective measures that rely on parent and child report. Measuring these health outcomes focussed on the impact of improved sleep rather than measuring improved sleep itself. CONCLUSIONS: It is important for HCPs administering NIV to ascertain whether CYP have noticed any of their sleep-disordered breathing symptoms and any improvements from using NIV, including the relationship between benefits and side effects. Focussing on promoting understanding for CYP who are unable to link their wellbeing to their previous night's sleep may be futile and HCP strategies should concentrate on the process of tolerating the device. Parents, CYP and HCPs should collaborate to identify treatment goals specifically tailored for the child and monitor any progress against these goals.

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.

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.

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.

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.

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).

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.

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).

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.

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.

The Role of Health Care Provider Goals, Plans, and Physician Orders for Life-Sustaining Treatment (POLST) in Preparing for Conversations About End-of-Life Care.

The Physician Orders for Life-Sustaining Treatment (POLST) is a planning tool representative of an emerging paradigm aimed at facilitating elicitation of patient end-of-life care preferences. This study assessed the impact of the POLST document on provider goals and plans for conversations about end-of-life care treatment options. A 2 (POLST: experimental, control) × 3 (topic of possible patient misunderstanding: cardiopulmonary resuscitation, medical intervention, artificially administered nutrition) experimental design was used to assess goals, plan complexity, and strategies for plan alterations by medical professionals. Findings suggested that the POLST had little impact on plan complexity or reaction time with initial plans. However, preliminary evidence suggested that the utility of the POLST surfaced with provider responses to patient misunderstanding, in which differences in conditions were identified. Significant differences in goals reported as most important in driving conversational engagement emerged. Implications for findings are discussed.

Scientific Message Translation and the Heuristic Systematic Model: Insights for Designing Educational Messages About Progesterone and Breast Cancer Risks.

Results of ongoing scientific research on environmental determinants of breast cancer are not typically presented to the public in ways they can easily understand and use to take preventive actions. In this study, results of scientific studies on progesterone exposure as a risk factor for breast cancer were translated into high and low literacy level messages. Using the heuristic systematic model, this study examined how ability, motivation, and message processing (heuristic and systematic) influenced perceptions of risk beliefs and negative attitudes about progesterone exposure among women who read the translated scientific messages. Among the 1254 participants, those given the higher literacy level message had greater perceptions of risk about progesterone. Heuristic message cues of source credibility and perceived message quality, as well as motivation, also predicted risk beliefs. Finally, risk beliefs were a strong predictor of negative attitudes about exposure to progesterone. The results can help improve health education message design in terms of practitioners having better knowledge of message features that are the most persuasive to the target audiences on this topic.

Effects of Constraints and Consequences on Plan Complexity in Conversations About End-of-Life Care.

The current study assessed the role of health care provider constraints and perceived consequences on plan complexity for conversations with patients about end-of-life care. Meta-goal constraints, perceived consequences associated with conversational engagement and planning theory provides the basis for research questions and hypotheses posed. Findings suggested that while the meta-goals of efficiency and politeness were each recognized as important, providers indicated greater concern for politeness during patient interactions concerning treatment options. Reported constraints had no impact on plan complexity. Perceived consequences of conversational engagement were predominantly positive and concerned the patient. Findings may enhance the understanding of social workers in their educational role regarding the potential training needs of health care team members in palliative care contexts.

Communicating effectively to patients about a cancer referral.

BACKGROUND: The UK's National Institute for Health and Care Excellence (NICE) advises GPs to inform patients referred to the Urgent Suspected Cancer (USC) pathway about their impending service and expectations. However, little is known about patient experiences and information needs post-referral. GPs often grapple with conveying the urgency of referrals while offering reassurance. AIM: This study explores GP communication regarding cancer and USC referrals. METHOD: A secondary analysis of 23 audio-recorded GP-patient consultations, selected from a larger dataset of 200 consultations in Surrey and London (2017-2018), was conducted, focusing on discussions related to cancer. RESULTS: We found that most GPs informed patients that they might have cancer and engaged in reassurance about the patient's low risk of cancer using personalised risk statements. Some GPs, however, avoided all mention of cancer, using symptom-led language instead. GPs tended to focus on communicating practical rather than support-based information when discussing the referral. While most GPs informed patients that they would be seen by a specialist within two weeks, few discussed patients' support needs during the referral or specialist appointment. CONCLUSION: This presentation will offer language recommendations for clear communication about cancer referrals. This plays an important role in promoting shared decision-making and driving patient attendance for investigations. The study highlights the need for further research on communication practices around cancer referral to improve patient understanding and experience. Our recommendations for enhanced communication may improve patient outcomes by optimising routes to diagnosis via primary care.

A 10-year content analysis of original research articles published in Health Communication and Journal Of Health Communication (2000-2009).

This study presents data from a content analysis of original research articles published in Health Communication and Journal of Health Communication from 2000 to 2009. The authors coded 776 articles using categories that identified health topics, theory, population characteristics, and methods used in each study. Distinctions between the published research in Health Communication and Journal of Health Communication are highlighted. Across both journals, findings demonstrated articles sometimes lack racial demographic information, primarily perform research in the United States, rely heavily on survey data, and often lack a theoretical framework. The top physical health topic addressed across both journals was cancer, and the top non-physical health topic addressed was the role of media in health. Journals displayed differences in several areas and those differences often mirrored each journal's stated objectives. Results are discussed in terms of their implications for expanding health communication research to be reflective of issues salient to public health within the United States and around the world.

The effects of heuristic cues, motivation, and ability on systematic processing of information about breast cancer environmental factors.

The heuristic systematic model is used to investigate how ability, motivation, and heuristic message cues predict knowledge scores for individuals receiving messages written for different literacy levels about 3 environmental risk factors for breast cancer. The 3 risk factors were the roles of genetics, progesterone, and ingesting perfluorooctanoic acid in breast cancer risk. In this study, more than 4,000 women participated in an online survey. The results showed support for the hypotheses that ability (measured as education, number of science courses, and confidence in scientific ability) predict knowledge gain and that those individuals who presented with the lower literacy level message had significantly higher knowledge scores across all 3 message topics. There was little support for motivation or heuristic cues as direct predictors of knowledge gain across the 3 message topics, although they served as moderators for the perfluorooctanoic acid topic. The authors provide implications for health communication practitioners.

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.