The supportive care needs of parents with a child with a rare disease : results of an online survey

Background: Parents caring for a child affected by a rare disease have unmet needs, the origins of which are complex and varied. Our aim was to determine the supportive care needs of parents caring for a child with a rare disease. Methods: An online survey was developed consisting of 45 questions (108 items) and separated into six domains. The survey included questions about perceived level of satisfaction with receiving care, experiences and needs of providing daily care, the impacts of disease on relationships, the emotional and psychological burdens of disease, and parents overall satisfaction with the support received. Results: Three-hundred and one parents from Australia and New Zealand completed the survey; 91 % (n = 275/301) were mothers, with 132 distinct rare diseases being reported. Fifty-four percent (n = 140/259) of parents were dissatisfied with health professionals’ level of knowledge and awareness of disease; 71 % (n = 130/183) of parents felt they received less support compared to other parents. Information regarding present (60 %, n = 146/240) and future services (72 %, n = 174/240) available for their child were considered important. Almost half of parents (45 %, n = 106/236) struggled financially, 38 % (n = 99/236) reduced their working hours and 34 % (n = 79/236) ceased paid employment. Forty-two percent (n = 99/223) of parents had no access to a disease specific support group, and 58 % (n = 134/230) stated that their number of friends had reduced since the birth of their child; 75 % (n = 173/230) had no contact with other parents with a child with a similar disease, and 46 % (n = 106/230) reported feeling socially isolated and desperately lonely. Most frequent emotions expressed by parents in the week prior to completing the survey were anxiety and fear (53 %, n = 119/223), anger and frustration (46 %, n = 103/223) and uncertainty (39 %, n = 88/223). Conclusion: This study is the first to develop an online survey specifically for use with parents to investigate their supportive care needs across a large and diverse group of rare diseases. The findings highlight that parents with a child with a rare disease have common unmet needs regardless of what disease their child has. Such information may allow health providers to improve child outcomes through improving parental supportive care

Influence of country and city images on students’ perception of host universities and their satisfaction with the assigned destination for their exchange programmes

ABSTRACT: This research focuses on the effect that country image, city image and university image has on students’ a priori satisfaction with the assigned destination for their international exchange programme (Bachelor and Master). In particular, this study establishes six hypotheses related to the causal relationships among the different typologies of image and their effects on students’ satisfaction with the assigned destination to study at least one semester in a host university. In order to contrast these hypotheses, a quantitative research was carried out in the Spanish city of Santander (Spain), by obtaining a sample of 245 international students who participated in an exchange programme at the University of Cantabria. The research findings are: (1) students’ satisfaction with the assigned destination is positively influenced by the university image; (2) the university image is positively influenced by the city image; and (3) the city image is positively influenced by the country image

The supportive care needs of parents with a child with a rare disease: a qualitative descriptive study

There are few studies that exist which focus specifically on parents with a child with a rare disease. The purpose of this study was to better understand the lived experiences and supportive care needs (SCN) of parents caring for a child across a spectrum of rare diseases. A qualitative descriptive approach was used to guide the research, and four semi-structured focus group interviews were conducted with 23 parents (17 mothers and 6 fathers). Participants described 'feeling boxed-in outside the box' due to a number of limitations unique to their child's disease, daily practical challenges in providing care and the various relational impacts of caring for a child with a rare disease were discussed. The results from this study help to give clearer direction for health professionals on where to focus future efforts in better meeting the supportive care needs of parents and their child with a rare disease

Neonatal abstinence syndrome in methadone exposed infants: Role of genetic variability

Poster presented at: CPDD Scientific Meeting, San Juan, PR. Aims: NAS incidence \u26 severity in infants exposed to methadone during gestation is independent of maternal methadone dose. The incidence \u26 severity of NAS could be in part due to genetic variability of key genetic loci related to opioid response; the interleukin-1beta (IL-1B) \u26 mu opioid receptor (OPRM1) genes. This study aimed to investigate the impact of genetic variability in IL-1B -31 or OPRM1 A118G on NAS incidence (treatment required) \u26 severity (dose of morphine). Methods: This pilot study collected cheek cells from 71 methadone exposed infants; 46 required treatment. Complete genetic \u26 morphine treatment data were obtained for a subset of 26 NAS infants. Results: There were no difference in IL-1B or OPRM1 genotypes between infants with, \u26 without NAS (OR (p) = 1.9 (0.21) and 0.23 (0.24), respectively). There was also no impact of genetic variability at IL-1B and OPRM1 on morphine treatment (median, mg): initial morphine dose – wild-type (WT, n = 21) 0.15 and variant (Var, n = 5) 0.2 (p = 0.06) and WT (n = 24) 0.17 and Var (n = 2) 0.22 (p = 0.73), respectively; maximum morphine dose – WT (n = 21) 0.3 and Var (n = 5) 0.28 (p = 0.94) and WT (n = 24) 0.29 and Var (n = 2) 0.24 (p = 0.39), respectively; and total morphine in the first month of life – WT (n = 20) 33.8 and Var (n = 5) 34.8 (p = 0.67) and WT (n = 23) 34.8 and Var (n = 2) 25.4 (p = 0.38), respectively. Conclusions: Despite genetic variability at these loci being reported to impact opioid response in adults, our study to date has not replicated these findings in infants. However, infant numbers in each genotype group were low. Therefore, the possibility remains for an association between genetic variability and NAS, leading to predictive tools to pre-determine NAS incidence \u26 severity. Data collection for this project continues.http://jdc.jefferson.edu/petposters/1002/thumbnail.jp

Advocates, interest groups and Australian news coverage of alcohol advertising restrictions: content and framing analysis

<p>Abstract</p> <p>Background</p> <p>Legislating restrictions on alcohol advertising is a cost-effective measure to reduce consumption of alcohol. Yet Australia relies upon industry self-regulation through voluntary codes of practice regarding the content, timing and placement of alcohol advertising. Ending industry self-regulation was recommended by the National Preventative Health Taskforce; a suggestion contested by the drinks industry. Debates about emerging alcohol-control policies regularly play out in the news media, with various groups seeking to influence the discussion. This paper examines news coverage of recommendations to restrict alcohol advertising to see how supporters and opponents frame the debate, with a view to providing some suggestions for policy advocates to advance the discussion.</p> <p>Methods</p> <p>We used content and framing analyses to examine 329 Australian newspaper items mentioning alcohol advertising restrictions over 24 months. All items were coded for mentions of specific types of advertising and types of advertising restrictions, the presence of news frames that opposed or endorsed advertising restrictions, statements made within each frame and the news-actors who appeared.</p> <p>Results</p> <p>Restrictions were the main focus in only 36% of 329 items. Alcohol advertising was conceived of as television (47%) and sport-related (56%). Restrictions were mentioned in non-specific terms (45%), or specified as restrictions on timing and placement (49%), or content (22%). Public health professionals (47%) appeared more frequently than drinks industry representatives (18%). Five supportive news frames suggested the policy is <it>a sensible public health response</it>, <it>essential to protect children</it>, <it>needed to combat the drinks industry, required to stop pervasive branding</it>, or as <it>only an issue in sport</it>. Four unsupportive frames positioned restrictions as <it>unnecessary for a responsible industry, an attack on legitimate commercial activities, ineffective and ‘nannyist’,</it> or <it>inessential to government policy</it>. Support varied among news-actors, with public health professionals (94%) more supportive than the public (68%), community-based organisations (76%), the government (72%), and the sports (16%), drinks (3%), or advertising (4%) industries.</p> <p>Conclusion</p> <p>Restrictions on alcohol advertising currently have low newsworthiness as a standalone issue. Future advocacy might better define the exact nature of required restrictions, anticipate vocal opposition and address forms of advertising beyond televised sport if exposure to advertising, especially among children, is to be reduced.</p