Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices.

AIM: The aim of this study was to seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions. BACKGROUND: Internationally, there are a growing number of young adults with life-limiting conditions and/or complex needs which are degenerative, progressive and diverse and involve complex life-long symptom, medication management as well as palliative care. There are 55,721 young adults, aged 18-40 in England, which continues to increase. The hospice sector is experiencing demands to extend services for this population despite concerns about the appropriateness of adult hospices and their nursing staff to provide care for the complex and unfamiliar conditions of this patient group. Evidence is needed of hospices' views and the main challenges faced providing services for young adults. DESIGN: Descriptive cross-sectional survey. METHODS: xChildren and adult hospices completed an online survey exploring service provision and their views of respite care for young adults with life-limiting conditions from 18 years old and onward. Data were collected between October 2015 - February 2016. FINDINGS: Respondents (N = 76 hospices) reported that children's hospices predominantly provided short breaks and end-of-life care; adult hospices provided mainly symptom management, end-of-life care and day services. Main challenges were lack of existing adult respite services; lack of funding and capacity; lack of a skilled workforce in adult hospices; and the need for better integrated service provision. CONCLUSION: Examples of good collaborative working were reported. With an increasing population of young adults and pressure on families, it is vital that services work together to find sustainable solutions to the challenges.

Research priorities for respiratory nursing: a UK-wide Delphi study.

Respiratory nurses make a significant contribution to the delivery of respiratory healthcare, but there is a dearth of nurse-led, practice-focused, published research. Using a modified three-round Delphi, this study sought to identify research priorities for respiratory nursing to inform a national research strategy. Study information and the survey link were sent electronically to members of UK professional respiratory organisations. Round 1 had 78 items across 16 topics, informed by a systematic literature review. Respondents suggested additional items which were content analysed to inform Round 2. Respondents rated all items and ranked the topics in all rounds. To ensure rigour, rounds had an explicit focus with pre-determined criteria for consensus (70%). In total, 363 responses were received across Rounds 1, 2 and 3 (n=183, 95 and 85, respectively). The top five research priorities were: 1) "Patient understanding of asthma control"; 2) "The clinical and cost-effectiveness of respiratory nurse interventions"; 3) "The impact of nurse-led clinics on patient care"; 4) "Inhaler technique"; and 5) two topics jointly scored: "Prevention of exacerbations" and "Symptom management". With potential international significance, this is the first UK study to identify research priorities for respiratory nursing, providing direction for those planning or undertaking research.

'You think that I'm smoking and they're not': why mothers still smoke in the home.

Past research into smoking and motherhood has explained how smoking enables mothers to care in conditions of hardship and poverty. However, much of this research was conducted before the risks to the health of non-smokers of inhaling tobacco smoke were widely known, and so mothers' attitudes towards passive smoking and caring remain under explored. Children living with smokers are at risk of developing serious acute and chronic conditions during childhood and later life. Despite increased awareness of health messages among parents, young children are still exposed to environmental tobacco smoke (ETS) in the home, with maternal smoking identified as the primary source of exposure. In this paper, we present the findings from a project set up to explore the changing social and environmental context of smoking and motherhood. Using focus groups, 54 mothers of children aged under five years from the Merseyside area of England, who smoked, discussed their beliefs about smoking, passive smoking and the health of their children. Although mothers were aware of the messages linking ETS exposure to childhood illnesses they appeared to rely more on their own explanations for any ill health experienced by their children, discounting smoking as a primary cause and preferring alternative explanations including 'genetics' and 'pollution'. These alternative explanations were common both within and between groups, suggesting that they form part of a wider resistant dialogue constructed within families and communities, where information about smoking and child health is received, challenged, and reconciled with existing knowledge, before being either accepted or rejected. Crucially, this alternative dialogue supports the mothers' continued smoking, and is inevitably linked to their personal need to smoke while caring. These findings have implications for the development of future strategies for promoting the health of children with mothers who are reluctant, or feel unable, to accept that smoking can affect the health of their children.

Disadvantaged mothers, young children and smoking in the home: mothers' use of space within their homes.

Breathing tobacco smoke is linked to poor health in young children, with their homes identified as the primary place of exposure. This UK study uses focus group discussions to explore how mothers living in disadvantaged areas use space within their homes to smoke while looking after children aged 0-4 years, and critically examines how they define non-smoking or smoking homes. Many women imposed temporary and ad hoc restrictions, and this research highlights how the mothers' desire to create a smoke-free environment for their children competes with their caring responsibilities, and how their efforts are restricted by the limitations of the physical environment of their homes.

'Imagine all that smoke in their lungs': parents' perceptions of young children's tolerance of tobacco smoke.

Despite knowing the risks to their children's health, parents continue to expose their children to tobacco smoke prior to and after their birth. This study explores the factors influencing parent's behaviour in preventing the exposure of their (unborn) children to environmental tobacco smoke (ETS) and any changes to their smoking behaviour in the home during the first years of their children's lives. Whether or not they stopped smoking during pregnancy, the women did not protect themselves from breathing in other people's smoke. Yet once the baby was born, parents actively protected the baby from environmental tobacco, believing that the lungs of newborn babies were too immature to tolerate smoke. This protection lasted only for a matter of weeks for some babies, or stopped when they were 6-12 months old, linked to their parent's belief that older babies could tolerate or avoid smoke. These findings suggest that changes made to smoking during the first weeks of a baby's life are unlikely to be sustained, and key messages about the risks if ETS exposure need to be delivered repeatedly over the first 2 years of life and re-enforced as the child gets older.