Public awareness and views on unlicensed use of medicines in children.

WHAT IS ALREADY KNOWN ABOUT THIS SUBJECT center dot There is increasing concern about the use of those medicines in children which have not been fully studied and licensed for childhood use. Such use is not uncommon, due in large part to a lack of availability of fully licensed products and formulations that are suitable for children. center dot There is little published information on the views of the public on this important area of paediatric care. WHAT THIS STUDY ADDS center dot A survey of 1000 members of the public in Northern Ireland indicated that such use of medicines in children is not well known. center dot However, when informed about this practice, the majority believed that it would compromise safety and increase the likelihood of adverse effects. They also believed that parents/guardians should be told if their child was prescribed a medicine that had not been fully tested in children. center dot Participants in the survey indicated that they would be reluctant to involve their child in a clinical trial to help with the licensing process unless the child was suffering from a life-threatening illness. To explore awareness and views of the general public on unlicensed use of medicines in children and on the participation of children in clinical trials. Members of the public completed a questionnaire survey administered by face-to-face interview in public areas in N. Ireland. The main outcome measures were the views on unlicensed use of medicines in children and on clinical trials in children. One thousand participants (59.2% female) took part; 610 were parents. Most participants (86%) had no previous knowledge about unlicensed use of medicines in children. Being a parent did not influence this nor did being a parent of a child who suffered from a health problem (P > 0.05). Most participants (92%) felt that parents should be told about unlicensed use of medicines, with the doctor most frequently selected as the person who should inform parents. At the outset, only 1.8% of participants felt that the use of medicines in children was unsafe. However, having been informed about unlicensed use of medicines, this proportion increased dramatically (62.4%; P <0.001). Views on whether participants would enter a child of their own into a clinical trial varied according to the health status of the child (P <0.05) i.e. a child in good health (3.9%) vs a child with a life-threatening condition (41.9%). There is limited public knowledge of unlicensed use of medicines in children and a general reluctance to involve children in clinical trials unless the child to be involved has a life-threatening condition.

Exploring public awareness and perceptions of palliative care: a qualitative study

Background: Research suggests that the public appear to be confused about the meaning of palliative care. Given the ageing population and associated increase in the number of patients requiring palliative care, it is vital to explore the public's understanding of this concept. Health-promoting palliative care seeks to translate hospice and palliative care ideals into broader public health practice.

Aim: To explore public perceptions of palliative care and identify strategies to raise awareness.

Design: An exploratory qualitative approach. Participants: Semi-structured telephone interviews were undertaken (N = 50) with members of the public who volunteered to participate in the study. The interviews focused on knowledge and perceptions of palliative care, expectations of palliative care services and the identification of strategies to raise public awareness of palliative care. The interviews were audio recorded and content analysed.

Results: Most participants had a general knowledge of palliative care, largely influenced by their own personal experience. They identified that palliative care was about caring for people who were dying and maintaining comfort in the last days of life. Participants expectations of services included the following: holistic support, symptom management, good communication and practical support to enable choice and carer support. Key aspects identified for promoting palliative care were the development of understanding and use of the term itself and targeted educational strategies.

Conclusion: Experience of palliative care generates understanding in the general public who also have ideas for increasing knowledge and awareness. The findings can inform policymakers about strategies to raise public awareness of palliative care.

Public awareness and attitudes toward palliative care in Northern Ireland

Background: The World Health Organisation recognises palliative care as a global public health issue and this is reflected at strategic level. Despite this, palliative care may not be universally welcomed. Surveys over the last decade have suggested that the general public have a lack of knowledge and negative perceptions towards palliative care. A detailed and comprehensive understanding of public views is needed in order to target education and policy campaigns and to manage future needs, expectations and resourcing of end of life care. The aim of this study was to establish the current levels of awareness and attitudes towards palliative care among the general public in Northern Ireland.

Methods: A community-based cross-sectional survey with a population of 3,557 individuals aged over 17 years was performed. Information was collected using a structured questionnaire consisting of 17 items. Open questions were subject to content analysis; closed questions were subject to descriptive statistics with inferential testing as appropriate.

Results: A total of 600 responses were obtained (response rate 17%). Responses indicated limited knowledge about palliative care. Female gender and previous experience influenced awareness in a positive direction. Respondents who worked in healthcare themselves or who had a close relative or friend who had used a palliative care service were more aware of palliative care and the availability of different palliative care services. Findings reveal the preferred place of care was the family home. The main barriers to raising awareness were fear, lack of interaction with health services and perception of lack of resources. A number of strategies to enhance awareness, access and community involvement in palliative care were suggested.

Conclusions: Public awareness of the concept of palliative care and of service availability remains insufficient for widespread effective and appropriate palliative care to be accepted as the norm. In particular, those without
previous family-related experiences lack awareness. This has implications for palliative care service provision and policy. An increased awareness of palliative care is needed, in order to improve knowledge of and access to services when required, empower individuals, involve communities and ultimately to realise the objectives contained within international strategies for palliative and end-of-life care.

Awareness and knowledge of autism and autism interventions: A general population survey.

Recent figures show that Autism Spectrum Disorder (ASD) affects at least 1 in 88 of the population, yet for years, international public awareness of ASD was limited. Over the past 5-10 years intense efforts have been made to raise autism awareness in the general population in countries such as UK and US. In this paper we report data from a large-scale general population survey (n=1204) in which we assessed autism awareness, knowledge about autism, and perceptions about autism interventions in Northern Ireland. We found high levels of autism awareness, in fact over 80% of the sample were aware of ASD and over 60% of these respondents knew someone with ASD in their own family, circle of friends or work colleagues. Generally, knowledge of strengths and challenges faced by individuals with ASD was relatively accurate. However, perceptions of interventions and service provider responsibilities were vague and uncertain. Results show that local and international autism awareness campaigns have largely been successful and that the focus should shift towards disseminating accurate information regarding intervention and service provider responsibilities.

How well do the public understand palliative care? A mixed methods study

Background: International research suggests that the general public appear to be confused about what palliative care is and who provides it.1 2 An understanding of public views is needed in order to target education and policy campaigns and to manage future needs, expectations and resourcing of care.

Aim: The aim of this study was to establish the current levels of awareness and perceptions of palliative care among the general public in Northern Ireland.

Methods: A mixed methods study comprising two phases was undertaken. A community-based cross-sectional survey with a population of 3,557 individuals aged over 17 years was performed. Information was collected using a structured questionnaire consisting of 17 items. Open questions were subject to content analysis; closed questions were subject to descriptive statistics with inferential testing as appropriate. This was followed by semi structured telephone interviews (n=50).

Results: Responses indicated limited knowledge about palliative care. Respondents who worked in healthcare themselves or who had a close relative or friend who had used a palliative care service were more aware of palliative care and the availability of different palliative care services. The main barriers to raising awareness were fear, lack of interaction with health services and perception of lack of resources. A key aspect identified for promoting palliative care was the development of understanding and use of the term itself and targeted educational strategies.

Conclusions: Public awareness of the concept of palliative care and of service availability remains insufficient. An increased awareness of palliative care is needed, in order to improve knowledge of and access to services when required, empower individuals, involve communities and ultimately to improve the delivery of palliative and end-of-life care.

Public knowledge and perceptions of connected health

Rationale, aims and objectives: This study aims to examine the public's knowledge and perceptions of connected health (CH).

Methods: A structured questionnaire was administered by face-to-face interview to an opportunistic sample of 1003 members of the public in 11 shopping centres across Northern Ireland (NI). Topics included public knowledge of CH, opinions about who should provide CH and views about the use of computers in health care. Multivariable analyses were conducted to assess respondents' willingness to use CH in the future.

Results: Sixty-seven per cent of respondents were female, 31% were less than 30 years old and 22% were over 60 years. Most respondents had never heard of CH (92%). Following a standard definition, the majority felt CH was a good idea (≈90%) and that general practitioners were in the best position to provide CH; however, respondents were equivocal about reductions in health care professionals' workload and had some concerns about the ease of device use. Factors positively influencing willingness to use CH in the future included knowledge of someone who has a chronic disease, residence in NI since birth and less concern about the use of information technology (IT) in health care. Those over 60 years old or who felt threatened by the use of IT to store personal health information were less willing to use CH in the future.

Conclusion: Increased public awareness and education about CH is required to alleviate concerns and increase the acceptability of this type of care.

Awareness of sunburn in childhood, use of sunbeds and change of moles in Denmark, Northern Ireland, Norway and Sweden

Background: Malignant melanoma (MM) is increasing rapidly in Northern Europe. To reduce incidence and mortality through earlier diagnosis, public awareness of MM is important. Thus, we aim to examine awareness of risk factors and a symptom of MM, and how awareness varies by country and socio-demographic factors in Denmark, Northern Ireland (NI), Norway and Sweden.

Methods: Population-based telephone interviews using the ‘Awareness and Beliefs about Cancer’ measure were conducted in 2011 among 8355 adults ≥50 years as part of the International Cancer Benchmarking Partnership Module 2. Prevalence ratios (PRs) with 95% confidence intervals were calculated.

Results: In these four countries, lowest awareness was found for ‘sunburn in childhood’ (63%), whereas awareness was high for ‘use of sunbeds’ (91%) and ‘mole change’ (97%). Lack of awareness of ‘sunburn in childhood’ was more prevalent among respondents from Norway [PR = 1.38 (1.28–1.48)] but less prevalent among respondents from Northern Ireland (NI) [PR = 0.78 (0.72–0.85)] and Sweden [PR = 0.86 (0.79–0.93)] compared with respondents from Denmark. Lack of awareness of ‘use of sunbeds’ was more prevalent among respondents from Norway [PR = 2.99 (2.39–3.74)], Sweden [PR = 1.57 (1.22–2.00)], and NI [PR = 1.65 (1.30–2.10)] compared with respondents form Denmark. Being a man, age ≥70, living alone, and having lower education, were each independently associated with lack of MM-awareness.

Conclusions: The results indicate relatively low awareness of ‘sunburn in childhood’ as a risk factor for MM, and important disparities in MM-awareness across countries and socio-demographic groups. Improved and more directed initiatives to enhance public MM-awareness, particularly about ‘sunburn in childhood’, are needed.

Comparison of genetic and morphological methods to detect the presence of American lobsters, Homarus americanus H. Milne Edwards, 1837 (Astacidea: Nephropidae) in Norwegian waters

American lobsters (Homarus americanus H. Milne Edwards, 1837) are imported live to Europe and should according regulations be kept in land-based tanks until sold. In spite of the strict regulations aimed specifically at preventing the introduction of this species into the NE Atlantic, several specimens of H. americanus have been captured in the wild, especially in Oslofjord, Norway since 1999. One of the great concerns is interbreeding between the introduced American species and the local European lobster, H. gammarus (Linnaeus, 1758). For this reason an awareness campaign was launched in 2000 focusing on morphologically "unusual" lobsters caught in local waters. Morphological characters have been based on colour and sub-ventral spines on the rostrum. Two samples of H. americanus were used for comparisons, as well as samples of European lobster from Oslofjord collected in 1992. Previous genetic analyses (allozymes, mtDNA and microsatellite DNA) have demonstrated that the American lobster is distinct from its European counterpart, with several additional alleles at many loci in addition to different allelic frequency distribution of alleles of "shared" alleles. During the present study, thirteen microsatellite loci were tested in the initial screening, and the three most discriminating loci (Hgam98, Hgam197b and Hgam47b) were used in a detailed comparison between the two species. A total of 45 unusual lobsters were reported captured from Ålesund (west) to Oslofjord (southeast) from 2001 to 2005 and these were analysed for the three microsatellite loci. Nine specimens were identified as American lobsters. Comparisons between morphological and genetic characteristics revealed that morphological differences are not reliable in discrimination the two species, or to identify hybrids. Further, some loci display almost no overlapping in allele frequency distribution for the reference samples analysed, thus providing a reliable tool to identify hybrids.

The contribution of the United Nations Convention on the Rights of the Child to understanding and promoting the interests of young people making the transition from care to adulthood

The United Nations Convention on the Rights of the Child (UNCRC) acknowledges that young people without parental care are entitled to special support and assistance from the State. In detailing their expectations, the UN Committee have issued Guidelines for the Alternative Care of Children which recognise that State parties have a number of responsibilities towards care leavers. The paper explores how the UNCRC reporting process, and guidelines from the Committee outlining how States should promote the rights of young people making the transition from care to adulthood, can be used as an instrument to track global patterns of change in policy and practice. Content analysis of State Party Reports and Concluding Observations from 15 countries reveals that to date there has been limited engagement with understanding and promoting the needs of this group in the reporting process; although where a government is committed to developing legislation and practice then this does find its way into their national reports. Data supplied by affiliates of the International Research Network on Transitions to Adulthood from Care (INTRAC) reveals that national concerns, political ideology, public awareness, attitudes and knowledge of the vulnerability of care leavers influence service responses to protect and promote the rights of this group and the attention afforded to such issues in reports to the Committee. Findings also suggest that global governance is not simply a matter of top down influence. Future work on both promoting and monitoring of the impact of the UNCRC needs to recognise that what is in play is the management of a complex global/national dynamic with all its uneven development, levels of influence and with a range of institutional actors involved.

Helping the most vulnerable out of the poverty trap and reducing inequality: Policies, strategies, and services for individuals with Autism Spectrum Disorder, including intellectual and neurodevelopmental disabilities: BASE Project Report (Volume 2) NILT Survey Autism Module

The primary purpose of the BASE Project was to establish how to help individuals with Autism Spectrum Disorder out of poverty by promoting social inclusion. In order to achieve this, a range of methodologies were utilised that aimed to provide a baseline against which the effect of the Autism Act (NI) 2011 and the associated Autism Strategy (2013-2020) and Action Plans can be measured. The BASE Project is reported in 5 volumes. Volume 2 reports on the analysis of the autism module of the Northern Ireland Life and Times (NILT) Survey that assessed public awareness, attitudes, knowledge, and projected behaviours with regard to individuals with ASD (all primary data and technical reports are available at www.ark.ac.uk/nilt/).

The NILT (2012) survey first ever autism module (n=1204) offered a baseline against which the impact of new autism legislation, policies, and strategies can be measured. Key findings:

• 82% awareness: Most people in Northern Ireland are aware of autism (n=989).
• 50% of all participants knew someone with autism personally (n=606).

Of those who were aware of autism:
• 19% had a close family member with autism (n=186), and/or a friends/acquaintance (n=296), and/or a work colleague (n=79) with autism.
• Autism awareness was particularly low for those from ethnic minorities and those with no internet access.
• Awareness of autism specific legislation was low (20%).
• Good levels of knowledge about autism strengths and challenges, slight tendency to overestimate the occurrence of special talents.
• Prevalence of autism was underestimated (62% thought autism was much less prevalent than official figures or did not know).
• Fairly accurate perception about causes of autism, i.e., not caused by poor parenting (84%).
• Strong support for evidence-based behavioural interventions (77%), but confusion about interventions that are not evidence-based (64%).
• Strong positive attitudes towards children and adults in social, educational and employment settings.
• Autism not viewed as necessarily ‘lifelong’ (58%); support for independent living (78%), e.g., driving a car (83%).
• More business for employers who employ people with autism (12%).
• Strong support for families caring rather than residential care (64%).
• Confusion about service responsibility: education (26%) health (33%) or both (28%).

Given increasing prevalence rates of ASD it is important that the general population is aware of autism and able to respond responsibly to the associated strengths and challenges. The results of the NILT (2012) first ever autism module show that the general public was well aware of autism, had positive attitudes, and was relatively knowledgeable about the issues faced by individuals and families affected directly. However, there was a lack of clarity about responsibility for effective service delivery. The NILT results show that a shift in focus is necessary from ‘awareness raising campaigns’ to an approach that delivers clarity with regard to intervention and accountability.

Man-up Against Suicide

Male suicide rates are high in Western countries including the US and Canada. Underpinned by men’s resistance to health help-seeking and challenges diagnosing mental illness including male depression, suicide ends the lives of many men amid inflicting pain and grief on the family and friends who are left behind. Fuelled by the discordant relationship between men’s low rates of depression and high rates of suicide we embarked on a unique and novel photovoice study title Man-Up Against Suicide. Specifically, men who have contemplated suicide in the past, and individuals (men and women) who have lost a male partner, family member or friend to suicide were invited to take photographs representing their experiences with men’s suicide with the ultimate goal of messaging ‘at risk’ men that there are alternatives to taking one’s life. Participants subsequently completed semi-structured individual interviews narrating the photographs and providing captions to accompany their selected images. In this presentation we share the preliminary study findings along with some participant photographs and narratives as a means to discussing; 1) men’s experiences of suicidal behaviours and their management strategies; and, 2) how men’s and women’s experiences of losing a male to suicide can de-stigmatize men’s mental illness and raise public awareness about male suicide.

Men’s depression and suicide literacy: A nationally representative Canadian survey

Background: Male suicide prevention strategies include diagnosis and effective management of men’s depression. Fundamental to suicide prevention efforts is public awareness, which in turn, is influenced by literacy levels about men’s depression and suicide.

Aim: To examine sex differences in mental health literacy with respect to men’s depression and suicide among a cohort of Canadian respondents.

Methods: 901 English-speaking Canadian men and women completed online survey questionnaires to evaluate mental health literacy levels using 10-item D-Lit and 8-item LOSS questionnaires, which assess factual knowledge concerning men’s depression and suicide. Statistical tests (chi-square, z-test) were used to identify significant differences between sex sub-groups at 95% confidence.

Results: Overall, respondents correctly identified 67% of questions measuring literacy levels about male depression. Respondents’ male suicide literacy was significantly poorer at 53.7%. Misperceptions were especially evident in terms of differentiating men’s depressive symptoms from other mental illnesses,
estimating prevalence and identifying factors linked to male suicide. Significant sex differences highlighted that females had higher literacy levels than men in regard to male depression.

Conclusions: Implementing gender sensitive and specific programs to target and advance literacy levels about men’s depression may be key to ultimately reducing depression and suicide among men in Canada.