When a child is sick: the role of social tourism in palliative and end-of-life care
animals; Britain; British Isles; child care; childhood diseases; children; Chordata; Commonwealth of Nations; Developed Countries; emotions; eukaryotes; Europe; European Union Countries; health care; health policy; Hominidae; Homo; mammals; man; OECD Countries; primates; social tourism; UK; United Kingdom; vertebrates; Western Europe
Drawing upon transformative service research and social tourism literature, this paper explores the relationship between respite care and childhood illness. It focuses specifically upon the short break opportunities attached to respite care offered in children's hospices in the United Kingdom. Pathographies (illness narratives), shared by patients, siblings and family (n = 23), provide unique insights into ways in which each participate in respite care. Participation prompts inclusivity and normality. It offers a break from illness, and contributes to uplifting feelings of optimism, escapism and new beginnings. Conclusions drawn argue the need for healthcare policy to move beyond 'Dying Well' narratives into ones which celebrate 'Living Well with Dying'. Tourism participation has much to offer such a progressive healthcare policy.
Hunter-Jones P; Sudbury-Riley L; Al-Abdin A; Menzies L; Neary K
Annals of Tourism Research
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.annals.2020.102900" target="_blank" rel="noreferrer noopener">10.1016/j.annals.2020.102900</a>
Trends in incidence, prevalence, and mortality of neuromuscular disease in Ontario, Canada: a population-based retrospective cohort study (2003-2014)
children; adolescent; adult; article; child; cohort analysis; female; human; major clinical study; male; palliative therapy; retrospective study; controlled study; palliative care; school child; Ontario; aged; health insurance; infant; young adult; age; America; amyotrophic lateral sclerosis; amyotrophic lateral sclerosis/ep [Epidemiology]; animals; APEC countries; Canada; childhood disease/ep [Epidemiology]; childhood diseases; Chordata; cohort studies; Commonwealth of Nations; data base; death rate; Developed Countries; disease course; disease prevalence; disease progression; eukaryotes; health care; Hominidae; Homo; human diseases; incidence; International Classification of Diseases; mammals; man; middle aged; mortality; mortality rates; muscles; neuromuscular disease/ep [Epidemiology]; neuromuscular diseases; neuromuscular disorders; North America; OECD Countries; planning; population research; preschool child; prevalence; primates; retrospective studies; sclerosis; spinal muscular atrophy/ep [Epidemiology]; spine; survival; trend study; trends; vertebrates
Background: Population trends of disease prevalence and incidence over time measure burden of disease and inform healthcare planning. Neuromuscular disorders (NMD) affect muscle and nerve function with varying degrees of severity and disease progression. Objective: Using health administrative databases we described trends in incidence, prevalence, and mortality of adults and children with NMD. We also explored place of death and use of palliative care. Methods: Population-based (Ontario, Canada) cohort study (2003 to 2014) of adults and children with NMD identified using International Classification of Disease and health insurance billing codes within administrative health databases. Results: Adult disease prevalence increased on average per year by 8% (95% confidence interval (CI) 6% to 10%, P<.001), with the largest increase in adults 18-39 years. Childhood disease prevalence increased by 10% (95% CI 8% to 11%, P<.0001) per year, with the largest increase in children 0 to 5 years. Prevalence increased across all diagnoses except amyotrophic lateral sclerosis and spinal muscular atrophy for adults and all diagnoses for children. Adult incidence decreased by 3% (95% CI -4% to -2%, P<.0001) but incidence remained stable in children. Death occurred in 34,336 (18.5%) adults; 21,236 (61.8%) of whom received palliative care. Death occurred in 1,009 (5.6%) children; 507 (50.2%) of whom received palliative care. Mortality decreased over time in adults (odds ratio (OR) 0.86, 95% CI 0.86-0.87, P<.0001) and children (OR 0.79, 95% CI 0.76-0.82, P<.0001). Use of palliative care over time increased for adults (OR 1.18, 95% CI 1.09 to 1.28, P <.0001) and children (OR 1.22, 95% CI 1.20 to 1.23, P <.0001). Conclusions: In both adults and children, NMD prevalence is rising and mortality rates are declining. In adults incidence is decreasing while in children it remains stable. This confirms on a population-based level the increased survival of children and adults with NMD.
Rose L; McKim D; Leasa D; Nonoyama M; Tandon A; Bai Y; Amin R; Katz S; Goldstein R; Gershon A
PLoS ONE
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1371/journal.pone.0210574" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0210574</a>