Amyotrophic lateral sclerosis (ALS) is a late-onset fatal neurodegenerative disease affecting motor neurons with an incidence of about 1/100,000. Most ALS cases are sporadic, but 5–10% of the cases are familial ALS. Both sporadic and familial ALS (FALS) are associated with degeneration of cortical and spinal motor neurons. The etiology of ALS remains unknown. However, mutations of superoxide dismutase 1 have been known as the most common cause of FALS. In this study, we provide a comprehensive review of ALS. We cover all aspects of the disease including epidemiology, comorbidities, environmental risk factor, molecular mechanism, genetic factors, symptoms, diagnostic, treatment, and even the available supplement and management of ALS. This will provide the reader with an advantage of receiving a broad range of information about the disease.
Background Palliative care is recognised as a public health issue with the need for earlier integration in the wider healthcare system. However, research indicates that it continues to be accessed late in the course of an illness, public understanding of palliative care is limited, and common misconceptions prevail. Strategies to address this are needed in order to reduce barriers to palliative care delivery and improve access. Methods An explanatory sequential mixed methods study, comprising a cross-sectional survey and interviews was undertaken. Sociodemographic characteristics, public awareness, knowledge and perceptions of palliative care were examined and strategies to raise awareness and overcome barriers within a public health framework were identified. Survey data were analysed using SPSS v25 with factor analysis and non-parametric statistics and qualitative data were analysed using thematic analysis. Results A total of 1201 participants completed the survey (58.3% female, mean age 61 years) and 25 took part in interviews. A fifth of participants (20.1%) had previously heard about palliative care and had an accurate understanding of the term. Being female, higher educated, married, and older, increased respondents’ levels of awareness. The three most commonly held misconceptions included: Palliative care is exclusively for people who are in the last 6 months of life (55.4% answered incorrectly); A goal of palliative care is to address any psychological issues brought up by serious illness (42.2% answered incorrectly); and a goal of palliative care is to improve a person’s ability to participate in daily activities (39.6% answered incorrectly). Talking about palliative and end of life care was advocated but societal taboos restricted this occurring with exposure limited to personal experience. Conclusions Current knowledge gaps and misconceptions derived from limited ad hoc personal experiences and fear of engaging in taboo conversations may deter people from accessing integrated palliative care services early in a disease trajectory. The results indicate the need for public education programmes that move beyond merely raising awareness but provide key messages within a public health approach, which may change attitudes to palliative care thus ultimately improving end of life outcomes.
Background: Advance care planning for children with palliative care needs is an emotionally, legally and complex aspect of care, advocated as beneficial to children, families and health professionals. Evidence suggests healthcare professionals often avoid or delay initiation. An overview of evidence on the factors that influence and impact on the health care professional’s initiation of paediatric advance care planning process is lacking. Aim: To review and synthesise evidence on the factors associated with health care professional’s decision to initiate paediatric advance care planning. Design: Systematic integrative review using constant comparison method. Data Sources: Electronic databases (CINAHL, PubMed, PsycINFO, Ovid MEDLINE, EMBASE, Web of Science and Cochrane) using MeSH terms and word searches in Oct 2019. No limit set on year of publication or country. Grey literature searches were also completed. Results: The search yielded 4153 citations from which 90 full text articles were reviewed. Twenty-one met inclusion criteria consisting of quantitative ( n = 8), qualitative ( n = 6) and theoretical ( n = 7) studies. Findings revealed overarching and interrelated themes ‘ The timing of initiation’, ‘What makes an initiator, ‘Professionals’ perceptions’ and ‘Prerequisites to initiation’. Conclusions: This review provides insights into the complexities and factors surrounding the initiation of advance care planning in paediatric practice. Uncertainty regarding prognosis, responsibility and unpredictable parental reactions result in inconsistent practice. Future research is required to inform intervention to assist health care professionals when initiating paediatric advance care planning conversations.
Information about psychology majors' activities after graduation is an important ingredient in the evaluation and renewal of undergraduate programs. In this article, we review the survey research on psychology alumni, analyzing the various survey objectiues, samples, results, and program implementations. Based on this review, we make recommendations about the design of future studies, the role of APA's Educational Affairs Office, and the use of life-span development theory and methodology to refine future alumni research in undergraduate psychology. "When . . . considering an undergraduate major, the college student sometimes rules out psychology on the grounds expressed something like this: 'Well, psychology is very interesting, but what can you do with it after you graduate?' " (King & Kimble, 1958, p. 23). After more than 30 years, little has changed in our need to promote the career prospects of undergraduate majors. This is especially true now that the number of baccalaureates awarded in psychology each year has reached 40,000 (Howard et al., 1986). What has changed is that our concern for these students and their future has insvired sovhisticated assessment methods for their employment and graduate school aspirations and innovative curricular interventions to respond to their needs. The future of psychology at the graduate level depends on the quality of our efforts at the undergraduate level (Bickman, 1985;Howard et al., 1986).In this article, we describe the ways researchers have assessed alumni of psychology programs. Surveys pose common questions. How have graduates fared in their employment situations? What are the alumni's retrospective judgments? How do employers analyze the launching and maintenance of successful careers? Resvonses to the surveys inform faculty, administratclrs, and students about life after graduation. The results can help faculty to design programs that will better prepare students for the future. Readerz interested in career programming innovations will discover that some of the authors mentioned in this article (e.g., Lunneborg) have also written about advising, career planning and placement, and curriculum projects in their departments. W e provide readers with an historical and critical analys~s of alumni studies. We believe that future research requires more sophisticated questions and methodology and that psychologrsts need to conceptualize t h e~r lnvestlgatlons of postbaccalaureate llvea more broadly There 15 a wealth of llterature In h~gher educatlon and m adult development to gu~de such efforts. Uses of the data also need to he expanded. The current zeltgelst, calling tor Increased as sessment, evaluation, and accountab~l~ty of programs (Ewell, 1985, Harr~s, 1985, Marchese, 1985 and the enrollment futures of lnstltutlons In whlch students want to guarantee t h e~r ablllty to pay back lncreaslng loan amounts (Kramer & Van Dusen, 1986), should foster well-des~gned studies.In the following sections, we tlrst descrlhe the samples for representatlve stud~es Second, we c r~t~c...
Advance care planning enables parents to discuss their goal and wishes for the future treatment and care of their life-limited or life-threatened child. Whilst research has identified the barriers clinicians face to initiate such discussions, the views of the parents have received scant attention. This qualitative study, using reflexive thematic analysis, aimed to explore parents’ experience of the initiation of their child’s advance care planning discussions, to help provide an understanding to inform future practice. Single interviews were undertaken with 17 non-bereaved and bereaved parents. Parents reported they had engaged with future thinking but needed time before initiating this with clinicians. They identified the need for a trusted professional and time for private, thorough, non-judgemental discussion without feeling clinicians were ‘giving up’. Parents reported that advance care planning discussions were not always aligned to the dynamics of family life. They felt that health professionals were responsible for initiating advance planning conversations according to the families’ individual requirements. There was an apparent lack of standardised protocols to assist paediatric advance care planning discussion initiation.Conclusion: Initiating advance care planning is a complicated process that needs to be tailored to the specific parent and child situation. Health professionals need to appreciate that parents are key contributors to initiate engagement with advance care planning discussions but that they also require support and care, recognising this may facilitate the building of trust, identified as a key corner stone, of paediatric advance care planning initiation and engagement. What is Known:• In paediatric palliative care, parents are challenged with wanting to sustain hope whilst thinking and planning for their child’s end of life. Paediatric advance care planning discussions are often delayed or avoided and triggered by physical deterioration. What is New:• Previous relationship with HCP not essential but parental trust of the HCP is fundamental to Paediatric advance care planning initiation engagement. To build mutual trust health professionals’ approach needs to be professional, respectful and empathetic to the parent and child’s situation.• Subtle paediatric advance care planning parent initiation preparation by HCP is often unnoticed by parents but may be the crux of empowering parents to initiate advance care planning conversations themselves as they need to feel a sense of regaining control before planning ahead.
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