Short-stay urgent hospital admissions of children with convulsions: A mixed methods exploratory study to inform out of hospital care pathways.

OBJECTIVE: To inform interventions focused on safely reducing urgent paediatric short stay admissions (SSAs) for convulsions. METHODS: Routinely acquired administrative data from hospital admissions in Scotland between 2015-2017 investigated characteristics of unscheduled SSAs (an urgent admission where admission and discharge occur on the same day) for a diagnosis of febrile and/or afebrile convulsions. Semi-structured interviews to explore perspectives of health professionals (n = 19) making referral or admission decisions about convulsions were undertaken. Interpretation of mixed methods findings was complemented by interviews with four parents with experience of unscheduled SSAs of children with convulsion. RESULTS: Most SSAs for convulsions present initially at hospital emergency departments (ED). In a subset of 10,588 (11%) of all cause SSAs with linked general practice data available, 72 (37%) children with a convulsion contacted both the GP and ED pre-admission. Within 30 days of discharge, 10% (n = 141) of children admitted with afebrile convulsions had been readmitted to hospital with a further convulsion. Interview data suggest that panic and anxiety, through fear that the situation is life threatening, was a primary factor driving hospital attendance and admission. Lengthy waits to speak to appropriate professionals exacerbate parental anxiety and can trigger direct attendance at ED, whereas some children with complex needs had direct access to convulsion professionals. CONCLUSIONS: SSAs for convulsions are different to SSAs for other conditions and our findings could inform new efficient convulsion-specific pre and post hospital pathways designed to improve family experiences and reduce admissions and readmissions.

Identifying and prioritising future interventions with stakeholders to improve paediatric urgent care pathways in Scotland, UK: a mixed-methods study.

OBJECTIVES: To identify and prioritise interventions, from the perspectives of parents and health professionals, which may be alternatives to current unscheduled paediatric urgent care pathways. DESIGN: FLAMINGO (FLow of AdMissions in chIldren and youNG peOple) is a sequential mixed-methods study, with public and patient involvement (PPI) throughout. Data linkage for urgent admissions and three referral sources: emergency department, out of hours service and general practice, was followed by qualitative interviews with parents and professionals. Findings were presented and discussed at a stakeholder intervention prioritisation event. SETTING: National Health Service in Scotland, UK. PARTICIPANTS: Quantitative data: children with urgent medical admission to hospital from 2015 to 2017. Qualitative interviews: parents and health professionals with experiences of urgent short stay hospital admissions of children. PPI engagement was conducted with nine parent-toddler groups and a university-based PPI advisory group. Stakeholder event: parents, health professionals and representatives from Scottish Government, academia, charities and PPI attended. RESULTS: Data for 171 039 admissions which included 92 229 short stay admissions were analysed and 48 health professionals and 21 parents were interviewed. The stakeholder event included 7 parents, 12 health professionals and 28 other stakeholders. Analysis and synthesis of all data identified seven interventions which were prioritised at the stakeholder event: (1) addressing gaps in acute paediatric skills of health professionals working in community settings; (2) assessment and observation of acutely unwell children in community settings; (3) creation of holistic children's 'hubs'; (4) adoption of 'hospital at home' models; and three specialised care pathways for subgroups of children; (5) convulsions; (6) being aged <2 years old; and (7) wheeze/bronchiolitis. Stakeholders prioritised interventions 1, 2 and 3; these could be combined into a whole population intervention. Barriers to progressing these include resources, staffing and rurality. CONCLUSIONS: Health professionals and families want future interventions that are patient-centred, community-based and aligned to outcomes that matter to them.

Regional variations in short stay urgent paediatric hospital admissions: a sequential mixed-methods approach exploring differences through data linkage and qualitative interviews.

OBJECTIVES: The aim of this sequential mixed-methods study was to describe and understand how paediatric short stay admission (SSA) rates vary across Health Board regions of Scotland. DESIGN: Exploratory sequential mixed-methods study. Routinely acquired data for the annual (per capita) SSA to hospital were compared across the 11 regions. Five diverse regions with different SSA per capita formed cases for qualitative interviews with health professionals and parents to explore how care pathways, service features and geography may influence decisions to admit. SETTING: Scotland. PARTICIPANTS: All children admitted to hospital 2015-2017. Healthcare staff (n=48) and parents (n=15) were interviewed. RESULTS: Of 171 039 urgent hospital admissions, 92 229 were SSAs, with a fivefold variation between 14 and 69/1000 children/year across regions. SSAs were higher for children in the most deprived compared with the least deprived communities. When expressed as a ratio of highest to lowest SSA/1000 children/year for diagnosed conditions between regions, the ratio was highest (10.1) for upper respiratory tract infection and lowest (2.8) for convulsions. Readmissions varied between 0.80 and 2.52/1000/year, with regions reporting higher SSA rates more likely to report higher readmission rates (r=0.70, p=0.016, n=11). Proximity and ease of access to services, local differences in service structure and configuration, national policy directives and disparities in how an SSA is defined were recognised by interviewees as explaining the observed regional variations in SSAs. Socioeconomic deprivation was seldom spontaneously raised by professionals when reflecting on reasons to refer or admit a child. Instead, greater emphasis was placed on the wider social circumstances and parents' capacity to cope with and manage their child's illness at home. CONCLUSION: SSA rates for children vary quantitatively by region, condition and area deprivation and our interviews identify reasons for this. These findings can usefully inform future care pathway interventions.

Insights from and limitations of data linkage studies: analysis of short-stay urgent admission referral source from routinely collected Scottish data.

INTRODUCTION: This study identified the referral source for urgent short-stay admissions (SSAs) and compared characteristics of children with SSA stratified by different referral sources. METHODS: Routinely acquired data from urgent admissions to Scottish hospitals during 2015-2017 were linked to data held by the three referral sources: emergency department (ED), out-of-hours (OOH) service and general practice (GP). RESULTS: There were 171 039 admissions including 92 229 (54%) SSAs. Only 171 (19%) of all of Scotland's GP practices contributed data. Among the subgroup of 10 588 SSAs where GP data were available (11% all SSA), there was contact with the following referral source on the day of admission: only ED, 1853 (18%); only GP, 3384 (32%); and only OOH, 823 (8%). Additionally, 2165 (20%) had contact with more than one referral source, and 1037 (10%) had contact with referral source(s) on the day before the admission. When all 92 229 SSAs were considered, those with an ED referrer were more likely to be for older children, of white ethnicity, living in more deprived communities and diagnosed with asthma, convulsions or croup. The odds ratio for an SSA for a given condition differed by referral source and ranged from 0.07 to 1.9 (with reference to ED referrals). CONCLUSION: This study yielded insights and potential limitations regarding data linkage in a healthcare setting. Data coverage, particularly from primary care, needs to improve further. Evidence from data linkage studies can inform future intervention designed to provide safe integrated care pathways.

Short stay hospital admissions for an acutely unwell child: A qualitative study of outcomes that matter to parents and professionals.

BACKGROUND: Numbers of urgent short stay admissions (SSAs) of children to UK hospitals are rising rapidly. This paper reports on experiences of SSAs from the perspective of parents accessing urgent care for their acutely unwell child and of health professionals referring, caring for, or admitting children. METHODS: A qualitative interview study was conducted by a multi-disciplinary team with patient and public involvement (PPI) to explore contextual factors relating to SSAs and better understand pre-hospital urgent care pathways. Purposive sampling of Health Board areas in Scotland, health professionals with experience of paediatric urgent care pathways and parents with experience of a SSA for their acutely unwell child was undertaken to ensure maximal variation in characteristics such as deprivation, urban-rural and hospital structure. Interviews took place between Dec 2019 and Mar 2021 and thematic framework analysis was applied. RESULTS: Twenty-one parents and forty-eight health professionals were interviewed. In the context of an urgent SSA, the themes were centred around shared outcomes of care that matter. The main outcome which was common to both parents and health professionals was the importance of preserving the child's safety. Additional shared outcomes by parents and health professionals were a desire to reduce worries and uncertainty about the illness trajectory, and provide reassurance with sufficient time, space and personnel to undertake a period of skilled observation to assess and manage the acutely unwell child. Parents wanted easy access to urgent care and, preferably, with input from paediatric-trained staff. Healthcare professionals considered that it was important to reduce the number of children admitted to hospital where safe and appropriate to do so. CONCLUSIONS: The shared outcomes of care between parents and health professionals emphasises the potential merit of adopting a partnership approach in identifying, developing and testing interventions to improve the acceptability, safety, efficiency, and cost-effectiveness of urgent care pathways between home and hospital.

A realist evaluation of a home-based end of life care service for children and families: what works, for whom, how, in what circumstances and why?

BACKGROUND: Children's palliative and end of life care is underpinned internationally by a commitment to provide care and support in the family's preferred place, which may include home, hospital or hospice. Limited evidence on models of best practice for the provision of children's end of life care at home is available. This realist evaluation of a novel, home-based end of life care service explored what works for whom, how, in what circumstances and why. METHODS: Adopting principles of realist evaluation, an initial programme theory (IPT) was developed from multiple data sources including a scoping review, service documentation review, audit of service data, and qualitative data gathered from stakeholder (n = 6) and family interviews (n = 10). Three families who had used the service were identified as case studies and interviews with professionals involved in their care (n = 20) were conducted to test the IPT. The findings informed the revised CMOs illustrating the contexts and mechanisms which underpin how and why the service works and for whom. RESULTS: CMO configurations were identified explaining how and why the service works for families across five core components: anticipatory approach to care planning and delivery, advance care planning, service responsiveness and flexibility, 24/7 nurse-led service with 24-h medical support, and partnership working. Key mechanisms include establishing trusting relationships, building skills and parent confidence to deliver care, early advance care planning discussions with clear documentation, providing a single point of contact for families, workforce planning and resources to deliver the service as intended, effective communication and leadership within and between providers of the service, and use of joint policies and procedures. Recommendations for future development and expansion of the service are also discussed. CONCLUSIONS: The findings highlight core components making this service a success and areas of challenge which continue to be addressed as the service develops. With increasing demand for home-based end of life care for children these components provide a structure which can help to guide service development to meet the needs of these families in other regions to ensure that children and families receive good quality care in their place of choice.

What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents.

BACKGROUND: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home. AIM: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service. DESIGN: A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents. SETTING/PARTICIPANTS: Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service. RESULTS: Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths. CONCLUSION: Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.

Home-Based End of Life Care for Children and their Families - A Systematic Scoping Review and Narrative Synthesis.

PROBLEM: There is a growing international drive to deliver children's palliative care services closer to home. Families should have choice of where end of life (EOL) care is provided with home as one option. This review aims to establish the current international evidence base relating to children's EOL care at home. ELIGIBILITY CRITERIA: A systematic scoping review was conducted in accordance with PRISMA-ScR reporting guidelines. Seven databases were searched to identify papers published between 2000 and 2018. Eligibility criteria included papers reporting children's EOL care with specific relation to: home being the preferred place of death; services providing EOL care at home; family experiences of receiving support when their child died at home and professionals' experiences of delivering this care. SAMPLE: Twenty-three papers met the eligibility criteria and were included in the review. RESULTS: Engagement of families in EOL care planning discussions was identified as a key factor to facilitate choice of setting. Consistent themes from the data suggest that providing access to care in the home 24/7 by a team of professionals with specialist pediatric palliative care knowledge is an essential aspect of any model of home-based EOL care. DISCUSSION AND APPLICATION TO PRACTICE: This is the first comprehensive review of home-based EOL care for children which offers a valuable contribution to policy, practice and research. The evidence mapped and synthesised in this review can inform the development of services to facilitate the provision of EOL care at home in line with the unique wishes and needs of children and families.

U.S. Veteran Health Care Utilization Increases after Caregivers' Use of National Caregiver Telephone Support Line.

The U.S. Department of Veterans Affairs (VA) established the national Caregiver Support Line (CSL) in February 2011. The CSL is operated by licensed master's degree social workers who provide caregivers of veterans with information about caregiver benefits and services, counseling, and referrals to a caregiver support coordinator at the nearest VA medical center. The authors compared differences in veteran health care utilization patterns in the six months before and after a caregiver call to the CSL, hypothesizing that veterans with caregivers using the CSL had improved access to health care services and improved access increased utilization of health care. A pre- and posttest design was used. CSL calls that resulted in referrals to VA health care services or to local VA caregiver support coordinators were included in the sample. Data were extracted from the CSL database and matched to veteran care utilization data using veteran medical record data. Veteran inpatient stays for general medicine, hospice, respite, and long-term care significantly increased after the CSL call, but other inpatient stays (surgery, neurology) did not. Outpatient services for home health, respite, and mental health all significantly increased. Caregivers' use of the national CSL may help facilitate access for veterans to needed care services.

The VA Caregiver Support Line: A Gateway of Support for Caregivers of Veterans.

In passing the Caregivers and Veterans Omnibus Health Services Act of 2010, Congress created a legislative mandate for the Veterans Administration (VA) to strengthen its program of support services for caregivers of veterans. As part of this expansion, the VA implemented a nationwide toll-free telephone Caregiver Support Line (CSL). The CSL is a single point of entry system to link caregivers to national and local services to support care of a veteran. This article describes the CSL and its role in supporting aging veterans and their caregivers, discusses social workers' contributions to its development and implementation, and reports utilization data.

A relational understanding of sibling experiences of children with rare life-limiting conditions: findings from a qualitative study.

Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings, has not yet been described or documented. This paper presents data from a UK-wide study that sought to understand the family experience of supporting a child with the rare degenerative LLCs of MPS and Batten disease. The aim of this paper is to report sibling experiences related to these rare degenerative and progressive conditions, in order to inform the future development of supportive interventions. Eight siblings of children with MPS (n = 7) and Batten Disease (n = 1) participated in semi-structured qualitative interviews. A card sort technique was utilised to support and engage the children. Siblings are clearly impacted emotionally, pragmatically and relationally by the ill health of another child in the family. The data indicate four key themes which demonstrate impacts on siblings: perceptions of the condition and its symptoms, impact on daily life, emotional consequences and ways of coping. Siblings often had considerable knowledge of the condition and took on important roles in symptom management. However, these experiences were in the context of managing relationships within the family (often protecting parents from an awareness of how much they knew) and relationships at school (including distraction from learning and being bullied by peers). The data highlight how sibling experiences are generated through a combination of negative disability discourses and support through peers and family members. The data indicate how these features shift as a consequence of witnessing the advancement of their brother's or sister's condition and the emotional sequelae of disease progression. Exploration of siblings' experiences of living with such rare progressive and degenerative LLCs suggest the focus of interventions to support this group should address their emotional health and ways to overcome isolation and build connections with other siblings who share their unique experiences. Critically, the data suggest that sibling support should be cognisant of the trajectory of the illness as well as the family, school and peer relational contexts that siblings inhabit.

Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families.

This paper reports on data from the initial phase of a UK-wide study exploring life-limiting conditions (LLCs) in children where, because of their rarity, little is understood regarding the significant symptom challenges of families and care professionals who support them. In this initial phase, care professionals (n=43) and families (n=16) completed a survey to identify which rare LLCs present symptom challenges and which individual symptoms prove difficult to manage. Findings led to the prioritization of mucopolysaccharidoses, Batten Disease and leukodystrophy. Care professionals' rationales for selecting these conditions included the presence of symptoms that are very difficult to manage, a requirement for additional clinical evidence to support symptom management, and the progressive nature of these diseases where symptoms frequently change and are difficult to predict. Families identified symptoms such as behavioural difficulties, visual impairments and communication impairments as those being most difficult to manage and having most impact on quality of life for children and families.

Promoting the use of Personal Asthma Action Plans: a systematic review.

OBJECTIVES: To investigate how best to encourage health professionals to promote, and for people with asthma to use, asthma action plans. METHODS: Systematic review. Randomised controlled trials published between 1960 and 2006 were searched using multiple electronic databases. Unpublished and ongoing studies were identified by contacting asthma experts internationally. Included trials reported outcome data for the promotion of action plans including issue of plans by health professionals, and patient ownership and use. RESULTS: 14 trials satisfied our study inclusion criteria. Of these, only four studies reported data for action plan use. Interventions included: education of doctors and people with asthma; telephone reinforcement; partially completed action plans and postal prompts inviting patients for general practice review; school asthma clinics; and asthma management systems (including the 3+ plan with patient recall for review and Internet-based physician monitoring). These interventions increased action plan ownership, use, or facilitation of use. Two of the highest quality papers were conducted in primary care and demonstrate the effectiveness of interventions directed at the organisation of asthma care in promoting action plan use. CONCLUSIONS: Primary care professionals could encourage the ownership and use of action plans through the implementation of proactive practice-based organisational systems, though further research is required to assess their practicality and effect on sustaining use long-term. Multi-disciplinary teams working in areas where asthma action plan ownership and use is sub-optimal should therefore consider how such interventions could be incorporated into existing practices and healthcare systems.

The economic costs of health service treatments for asbestos-related mesothelioma deaths.

This article explores the complex and neglected picture of occupational and environmental disease healthcare costs specifically relating to asbestos. Diagnosed mesothelioma cases in Scotland in one calendar year were used to investigate the subject in greater depth. Data from UK sources on asbestos disease types recorded in 2000 and their disease treatment costs were obtained. Acute care economic costs of these diseases are estimated. One hundred and twenty diagnosed, recorded, and treated cases of asbestos-related diseases occurred in 2000 in Scotland. Mesothelioma accounted for 100 cases and directly cost Scottish National Health Service hospitals an estimated 942,038 pounds. The estimated UK figure in 2000 was at least 16,014,646 pounds because official figures for diagnosed and recorded deaths from mesothelioma are running at over 1700 a year with rises predicted for 2010 of 2000 deaths. By 2003, 50,000 people in the UK had died from diagnosed and recorded mesothelioma since records began. Earlier disease treatment costs would have been significantly lower than those in 2000 but, at 2000 prices, cost to the UK was roughly 471,019,000 pounds in acute hospital expenditure. Figures for primary care costs, including caregiver costs, are incomplete or unknown. These disease costs are substantial and have some international generalizability. Treatment patterns and costs vary greatly. Many lung cancer cases due to asbestos exposure occur globally for each mesothelioma case. Hence figures provided in this article are certain to be gross underestimates of the total health service and personal economic costs of asbestos illness and treatment in Scotland.

Nursing best practice statements: an exploration of their implementation in clinical practice.

AIMS AND OBJECTIVES: To explore implementation of the first five Best Practice Statements from the perspective of nurses involved in their development. BACKGROUND: Best Practice Statements were introduced in Scotland to encourage consistent evidence-based nursing practice. As a new initiative, research was required to investigate their clinical implementation. DESIGN AND METHODS: In this descriptive study, semi-structured interviews of a purposive sample of nurses (n = 15) were undertaken. Content analysis was used to identify themes emerging from the interview data. FINDINGS: Four main themes emerged from analysis of transcripts: variations in use of the Best Practice Statements; benefits to patients; benefits to practitioners; and, barriers and drivers to use. Amongst participants, personal users adopted the statements in their own practice but enablers also actively encouraged others to use the statements. Whether participants acted as enablers depended on individual, team and organizational factors. The ability of participants to act as leaders was influential in determining their ability both to facilitate local implementation and to encourage others to regard the Best Practice Statements as a priority for implementation. CONCLUSIONS: This exploratory study highlighted examples of patients and practitioners benefiting from the Best Practice Statements. Such findings suggest these statements could become a useful tool in promoting evidence-based nursing practice. However, implementation of the Best Practice Statements varied between participants and their organizations. Nurses who were most effective in promoting local implementation of the Best Practice Statements adopted facilitator and leadership roles within their organizations. RELEVANCE TO PRACTICE: By relating research findings to the literature on guideline and research utilization, this study gives further insight into the implementation of evidence-based practice by nurses. In particular, it supports the conclusion that to be truly effective, initiatives to promote evidence-based practice require nurses to act as local facilitators and leaders.

Integrating environmental health into nursing and midwifery practice.

AIM: With the recognition that environmental health has relevance to all nursing and midwifery activities, the aim of this paper is to discuss nurses' and midwives' past and present involvement in environmental health in the UK, where the international situation demonstrates good practice, and the challenges and possibilities for greater and more effective UK-based activity in the future. BACKGROUND: The association between environmental hazards and adverse health effects has received increasing attention over recent years. In the United States of America (USA), the importance of developing an environmental health role for nurses outside of the "traditional" occupational and environmental health nursing specialty has been recognized and acted upon through education, information programmes and policy developments. In the United Kingdom (UK), the same degree of interest, commitment and activity is somewhat lacking. DISCUSSION: Little nursing and midwifery activity on environmental health issues has taken place in the UK over recent years. The lack of development in this field may relate to the problems of an already overstretched disease treatment service and the lack of an upstream approach to public health. Theoretical and philosophical influences, as well as individual and organizational obstacles or constraints, exist and may hinder nurses and midwives in their efforts to address the subject. Yet nurses and midwives are the largest group in the National Health Service workforce and this gives enormous potential for effective interventions in environmental health. CONCLUSIONS: Whilst barriers and obstacles to nursing and midwifery involvement in environmental health in the UK exist, they are all surmountable and appropriate interventions could prove cost-effective in the middle and long-term. Additionally, they may be viewed as a necessary activity for nurses and midwives in response to real health threats and the expressed worries and concerns of patients and communities.

Scotopic electroretinogram in term infants born of mothers supplemented with docosahexaenoic acid during pregnancy.

PURPOSE: To test the hypothesis that the supplementation of the diets of pregnant women with a fish oil rich in docosahexaenoic acid (DHA) enhances retinal development in their healthy term infants, as measured during the early postnatal period by the electroretinogram (ERG). METHODS: One hundred pregnant women were randomized to receive either a fish oil (n = 50) or a placebo oleic acid dietary supplement (n = 50) from 15 weeks of pregnancy until delivery. Total fatty acids in red blood cells (RBCs) and plasma were measured in mothers at 15 and 28 weeks of pregnancy and at delivery and in their infants in umbilical cord blood. Infant retinal development was assessed within the first week of life with full-field ERGs that included a scotopic blue intensity series (n = 41) and a bright white flash (2.0 log cd-s/m(2); n = 44). RESULTS: Infants born of mothers who received supplements did not differ at birth in weight, gestational age, or any other standard variable. Infant DHA status at birth, as measured from umbilical cord blood, did not differ significantly between maternal supplementation groups. ERG implicit times, amplitudes, and parameters of the stimulus-response function did not differ significantly between infants in the maternal supplemented and placebo groups. There was, however, a relationship between infant DHA status and maturity of the retina at birth, regardless of maternal supplementation group. A measure of retinal sensitivity (log sigma) correlated significantly (P < 0.005) with DHA status (as a percentage of total fatty acid; TFA) in infant cord blood. Infants in the highest quartile for cord blood DHA had higher retinal sensitivity compared with infants in the lowest quartile. Infants in the highest quartile for plasma DHA, both as a percentage of TFA and concentration, were born at a significantly later gestational age than were infants in the lower quartiles. CONCLUSIONS: These findings demonstrate an association between the DHA status of term infants and retinal sensitivity, suggesting an essential role of this long-chain polyunsaturated fatty acid (LCPUFA) in the development and function of the retina. However, maternal DHA status was not significantly associated with infant retinal sensitivity and no direct effect of maternal supplementation was observed.