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.

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.

Risk factors for Barrett's esophagus: a scoping review.

INTRODUCTION: Cancer of the esophagus is a highly lethal disease with many patients presenting with metastatic spread of their tumor at diagnosis; a consequence of this late presentation is the 5-year survival rate of <20 %. Barrett's esophagus (BE), a premalignant condition of the distal esophagus, is the main risk factor for adenocarcinoma of the esophagus. The development of a risk prediction tool that could assist healthcare professionals in identifying people at increased risk of developing BE would be advantageous. Understanding the factors that influence the risk of developing BE is the first stage of developing a risk prediction tool. METHODS: A scoping review was undertaken to address the following question 'what factors influence the risk of developing Barrett's esophagus?' Forty-six articles were included in this review. RESULTS: The majority of articles reviewed were case-control or cohort studies. Samples sizes ranged from 68 to 84,606. Risk factors reported to be statistically significant were divided into three categories: demographic, lifestyle and clinical factors. Strongest risk factors identified include: male gender, increasing age, white race, smoking, obesity and gastro-esophageal reflux disease symptoms, while some aspects of a person's diet appear to act as a protective measure. CONCLUSION: Risk factors for BE are complex and need to be considered by healthcare professionals when identifying patients that could benefit from endoscopic eradication. These results provide a stepping stone for the future development of a risk prediction model.

The supportive care needs of parents caring for a child with a rare disease: A scoping review.

BACKGROUND: Parents caring for a child with a rare disease report unmet needs, the origins of which are varied and complex. Few studies have systematically attempted to identify the supportive care needs of parents with a child with a rare disease comprehensively. We have used the widely accepted Supportive Care Needs Framework (SCNF) as the structure for this review. OBJECTIVE: The purpose of the current review was to identify the supportive care needs of parents with a child with a rare disease, irrespective of condition. METHODS: We conducted a scoping study review comprising 29 studies (1990-2014) to identify and examine the research literature related to the supportive care needs of parents, and to compare these needs with the seven domains outlined in the SCNF. RESULTS: Most common needs cited were social needs (72% of papers), followed by informational needs (65% of papers) and emotional needs (62% of papers), with the most common parental needs overall being information about their child's disease, emotional stress, guilt and uncertainty about their child's future health care needs, parents own caring responsibilities and the need for more general support. CONCLUSION: A paucity of studies exists that explore the supportive care needs of parents of a child with a rare disease. The SCNF only partially reflects the breadth and type of needs of these parents, and a preliminary revised framework has been suggested. Further research is required in this area, particularly empirical research to amend or confirm the suggested new framework.

The prostate cancer journey: results of an online survey of men and their partners.

BACKGROUND: The initial impact of treatments for men with prostate cancer is well reported in the literature. Less is known about the psychosocial needs of these men as their journey after diagnosis and treatment continues into the months and years. OBJECTIVE: The objective of this study was to examine and understand the supportive care needs of men diagnosed and treated for prostate cancer at key identifiable periods of their cancer journey. METHODS: An international Web-based survey was conducted in 2012, investigating men's prostate cancer pathways. The survey was based on substantial qualitative research and assessed for validity and reliability before piloting. To provide a unique insight into men living with prostate cancer, the views of partners were also elicited. RESULTS: Completed questionnaires were obtained from 193 men and 40 partners from 6 nations. The physical and psychosocial impact of treatment and need for support varied along the cancer journey. Fear, distress, loss, regret, anxiety, low self-esteem, depression, changes in sexuality, masculinity, and relationships were also described by both men and partners as adverse effects of the diagnosis and treatment for prostate cancer. CONCLUSIONS: Wives and partners are a key psychosocial support to men with prostate cancer. They may also provide valuable insight into men's supportive care needs that men are often unable to recognize themselves. IMPLICATIONS FOR PRACTICE: Findings suggest that wives and partners of men with prostate cancer can provide nurses and healthcare authorities with a powerful and unique resource in providing supportive care for men who are challenged by prostate cancer.

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.

Differences in self-reported outcomes of open prostatectomy patients and robotic prostatectomy patients in an international web-based survey.

OBJECTIVES: To compare patient reported outcomes between robotic assisted surgery and non-robotic assisted surgery. METHODS: This was an international web-based survey based on a qualitative research and literature review, an internet-based questionnaire was developed with approximately 70 items. The questionnaire included both closed and open-ended questions. RESULTS: Responses were received from 193 men of whom 86 had received either open (OP) or robotic (RALP) surgery. A statistically significant (p=0.027), ranked analysis of covariance was found demonstrating higher recent distress in the robotic (RALP) surgery group. Although not statistically significant, there was a pattern of men having robotic (RALP) surgery reporting fewer urinary and bowel problems, but having a greater rate of sexual dysfunction. CONCLUSIONS: Men who opt for robotic surgery may have higher expectations for robotic (RALP) surgery, when these expectations are not fully met they may be less likely to accept the consequences of this major cancer surgery. Information regarding surgical choice needs to be tailored to ensure that men diagnosed with prostate cancer are fully informed of not only short term surgical and physical outcomes such as erectile dysfunction and incontinence, but also of potential issues with regards to masculinity, lifestyle and sexual health.

Universities' expectations of pastoral care: trends, stressors, resource gaps and support needs for teaching staff.

OVERVIEW: Since the mid-90s, the university environment has challenged the motivation of academic staff to engage in pastoral care. A literature review revealed five themes that aligned with analysis of interview data from a previous study (Laws and Fiedler, 2010). The key themes were i) staff were often disturbed by unplanned intrusions of students who exhibited behavioural problems or sought emotional support, ii) the management of emotions in face-to-face encounters was stressful, iii) staff felt under-equipped for dealing with Mental Health (MH) issues, iv) standards and control needed updating and v) counselling and disability services did not meet academics' need to know about 'at risk' students. OBJECTIVE: Having identified the incidence of mental health issues among Australian University students, this study aims to locate literature that describes how well current university policies/protocols are supported by Evidence Based Practice in the management of MH problems in the student population. DESIGN/SETTING/PARTICIPANTS: Findings from a content analysis of the literature were triangulated with verbatim comments recorded during a previous study that utilised semi structured interviews with 34 academics at the School of Nursing and Midwifery and the School of Commerce at the University of South Australia (Laws and Fiedler, 2010). RESULTS: Lack of clarity on role boundaries around promotion of students' well-being was not clearly defined. The Higher Education (HE) institutions' slowness in responding to mental health needs of students combined with the increasing expectations of academics' performance monitoring has lead staff to avoid deep investment in their students' well-being. The literature indicates that students are in need of psychological support, but pastoral care remains ill-defined despite enduring expectations held by university administrators. Teacher motivation is diminished by time spent with students in need of emotional support which is not acknowledged in workloads. Staff stress is increased by 'emotion work' requiring a greater integration of resources that guide them toward more appropriate and timely student support. CONCLUSION: Staff require ongoing professional development on the nature of MH problems among students. There is a need for specific orientation programs that better define pastoral care and identify support services for staff and students. Universities need to focus on what is needed to create a well-being environment. Workload allocations must include 'emotion work', and mental health professionals must be employed to improve intervention and support not only for students but also for University staff. With better defined pastoral care roles, academics can more effectively balance their intrinsic and extrinsic motivations toward both personal and corporate objectives. Further research into the efficacy of university resourcing of programs and services is needed.