Development of the parental needs scale for rare diseases : a tool for measuring the supportive care needs of parents caring for a child with a rare disease

Background: Children and families affected by rare diseases have received scant consideration from the medical, scientific, and political communities, with parents’ needs especially having received little attention. Affected parents often have limited access to information and support and appropriate health care services. While scales to measure the needs of parents of children with chronic illnesses have been developed, there have been no previous attempts to develop a scale to assess the needs of parents of children with rare diseases. Objective: To develop a scale for measuring the supportive care needs of parents of children with rare diseases. Method: A total of 301 responses to our Parental Needs Survey were randomly divided into two halves, one for exploratory factor analysis and the other for confirmatory factor analysis (CFA). After removing unsuitable items, exploratory factor analysis was undertaken to determine the factor structure of the data. CFA using structural equation modeling was then undertaken to confirm the factor structure. Results: Seventy-two items were entered into the CFA, with a scree plot showing a likely four-factor solution. The results provided four independent subscales of parental needs: Understanding the disease (four items); Working with health professionals (four items); Emotional issues (three items); and Financial needs (three items). The structural equation modeling confirmed the suitability of the four-factor solution and demonstrated that the four subscales could be added to provide an overall scale of parental need. Conclusion: This is the first scale developed to measure the supportive care needs of parents of children with rare diseases. The scale is suitable for use in surveys to develop policy, in individual clinical assessments, and, potentially, for evaluating new programs. Measuring the supportive care needs of parents caring for a child with a rare disease will hopefully lead to better physical and psychological health outcomes for parents and their affected children

General practitioners' use of risk prediction tools and their application to Barretts Oesophagus : a qualitative study

Background: Risk prediction tools are widely used for the early identification of disease and expediting referrals to medical specialists for further assessment. This study provides an understanding of general practitioners preferences for using some prediction tools over others. The recent development of a risk prediction model for Barrett’s oesophagus prompted our investigation of General Practitioners perspectives of the barriers and enablers to its use and screening tools per se. Method: Individual semi-structured interviews explored the use of risk prediction tools in the general practice setting. A case scenario was used to create a schema that described the risk assessment process for Barrett’s oesophagus. A content analysis of verbatim transcripts was coded for barriers and enablers to tool use and linked to explanatory themes. Results: Data was collected from five general practitioners and one gastroenterologist. Barriers to regular use of risk prediction tools were identified and grouped using five themes; time poverty, tool format style, remembering to use, relevance of questions, and reduced autonomy in clinical decision making. Five key reasons for regular use were also identified; simple to use, memory prompt, provides a clear guide, aids in keeping me focused, and easy to access. All participants acknowledged the need for identifying Barrett’s oesophagus, the precursor to oesophageal adenocarcinoma, and viewed our tool as a significant contribution to risk assessment of this condition. Conclusion: Identifying barriers and enablers is essential to wide implementation of risk prediction tools. Participants provided information crucial to the translation of our risk prediction model for Barrett’s oesophagus into clinical practice. They also confirmed that the developed model would be useful in the clinical setting

Supporting fathers who want to be involved in providing healthcare for their child

An increasing number of fathers want to be involved in providing healthcare for their child. Nurses endeavouring to include fathers in care are hindered by a lack of evidence-based guidelines outlining how best to engage with, educate and upskill this parent. Fathers remain a relatively understudied parent and there are insufficient data to validate guidelines. A scoping review sought to locate, describe and summarise evidence of fathers performing healthcare for their child experiencing an acute, chronic or long-term condition; identify the type of support fathers received when acquiring healthcare skills; and determine gaps in research knowledge relevant to nursing practice in the context of family-centred care. A search was undertaken of five electronic databases, relevant journals and grey literature reported in the English language for works produced between 2002 and 2017. Twelve works met the inclusion criteria and were suitable for analysis. Descriptions of paternal health practices remain scant and therefore limit our knowledge of fathers' repertoire of skills, potential abilities and support needs. An evidence-based approach is needed to guide nurses in their support of fathers who actively seek to be involved in their child's healthcare. A mixed-methods approach with longitudinal data collection is required to fill this research gap

Nursing student's evaluation of a virtual classroom experience in support of their learning Bioscience

Face-to-face communication with students remains the gold standard in teaching; the effectiveness of this approach to learning is commonly and regularly assessed by students' evaluation of teaching and peer reviews of teaching. Critics note that increases in on-line education are driven more by economic forces than consistent evidence to show their long-term effectiveness or acceptance by students. Numerous studies report that students in higher education found their external studies comparatively more challenging than face-to-face delivery. Identifying how educators might best provide sufficient and effective personal support for students studying in the external mode continues to challenge educators. Opportunities do exist for blending on-line course work with synchronous interactions between students and their teachers but evaluations of these innovations rarely appear in the literature. In this study, a web–based virtual classroom simulated the synchronous face-to-face discussions that occur between Bachelor of Nursing students and tutors. First year students enrolled externally in a biological science course interacted in a virtual classroom for 13 weeks completing an ‘evaluation of experience’ survey following their final assessment. A comparison was made between ‘on-campus’ and ‘external to campus’ students to determine the relationship between i) overall satisfaction with the course and ii) final grades, as well as their experience of the virtual class

Parenting a child with a rare genetic disorder

Parenting a child with a rare genetic disorder has special difficulties, because diagnosis may be delayed or undetermined, support groups may be small and geographically scattered, and healthcare skills and resources limited. Ectodermal dysplasia (ED) is a life limiting condition of the central and peripheral nervous systems. It is associated with significant infant morbidity and mortality, with risks greatest in the first two years of life. For parents caring for a child with ED, this period is often a time of stress and uncertainty. Currently, there is a dearth of literature which reports on the experiences and support needs of parents caring for a child with ED. The aim of this chapter was to provide an in-depth account of the experiences and supportive care needs of parents caring for a child with ED. Methods: A mixed methods design was employed which used focus group data to aid in the development of an internationally distributed internet survey. Results: 126 parents from 14 countries responded to the survey. Five themes were identified; the need for early diagnosis, breastfeeding difficulties in mother carriers with ED, parental decision making, relational impacts and social support issues. Discussion: To our knowledge, this is the first study which identified and examined the experiences and support needs of parents within this rare genetic disorder. Further research into the areas outlined in this study is warranted to expand the knowledge and awareness gaps

What are the supportive care needs of parents caring for a child diagnosed with Ectodermal Dysplasia : a rare genetic disorder?

Parenting a child with a rare genetic disorder has special difficulties, because diagnosis may be delayed or undetermined, support groups may be small and geographically scattered, and healthcare skills and resources limited. Ectodermal dysplasia (ED) is a lifelimiting condition of the central and peripheral nervous systems. It is associated with significant infant morbidity and mortality, with risks greatest in the first two years of life. For parents caring for a child with ED, this period is often a time of stress and uncertainty. Currently, there is a dearth of literature which reports on the experiences and support needs of parents caring for a child with ED. The aim of this study was to provide an in-depth account of the experiences and supportive care needs of parents caring for a child with ED. A mixed methods design was employed which used focus group data to aid in the development of an internationally distributed Internet survey. Further research into the areas outlined in this study is warranted to expand the knowledge and awareness gaps

Informing the midwife on rare genetic disorders and their effects on mothers breastfeeding – a mixed methods study

Background: An inability to breastfeed is a common source of maternal distress. Genetic disorders can prevent lactation and impair mothers and infants ability to express breastmilk. Aim: The purpose of this paper is to report on the experiences of some mothers attempting to breastfeed when they or their infant have the rare genetic disorder ectodermal dysplasia. Methods: A mixed methods approach identified supportive care needs of parents caring for a child with ectodermal dysplasia. A secondary analysis determined that most mothers responding to an online survey and participating in a focus group held unresolved psychological issues related to their inability to breastfeed. The study received ethical clearance from the University of South Australia human research ethics committee prior to proceeding with data collection. Findings: Mothers in this study expressed frustration with the lack of understanding held by healthcare professionals and the lack of practical support when attempting to establish breastfeeding. Emotional comorbidity was linked to perceived failure to breastfeed. Mothers requested an awareness-raising approach to assist midwives and health professionals identify feeding problems earlier. The importance of active listening to mothers’ concerns and refraining from cursory judgement was identified. Implications: While genetic screening is offered to pregnant women who have a known family history of a genetic disorder, many genetic orders are rare and go undetected. Newly birthed mothers with a genetic disorder may encounter difficulties when attempting to establish breastfeeding. More genetic education is needed to assist midwives in gaining a better understanding of how physiological problems, associated with a genetic disorder, may be a root cause of breastfeeding difficulties