Employing a participatory arts-based research approach, we examined an innovative program from rural Ontario, Canada, designed to address social isolation among older people. Older socially isolated ...adults were matched to trained volunteers, where in dyads, the eight pairs created expressive art in their home setting over the course of 10 home visits. With thematic and narrative inquiry, we analysed the experiences and perceptions of the program leader, older participants, and older volunteers via their artistic creations, weekly logs, evaluations, and field notes. The findings reveal a successful intervention that positively influenced the well-being of older adult participants and older volunteers, especially in regards to relationships, personal development, and creating meaning as well as extending the intervention's impact beyond the program's duration. We also discuss opportunities for similar programs to inform policy and enable positive community-based health and social service responses to rural social isolation.
BackgroundThere is a critical need for hospital-to-home transitional care interventions to prepare family caregivers for patients' post-discharge care in rural communities. Four evidence-based ...interventions (named discharge planning, treatments, warning signs, and physical activity) have the potential to meet this need but family caregivers' perspectives on the acceptability of the interventions have not been examined. This gap is significant because unacceptable interventions are unlikely to be used or used as designed, thereby undermining outcome achievement. Accordingly, this study examined the perceived acceptability of the four interventions to rural family caregivers.Materials and methodsA multi-method descriptive design was used. The quantitative method entailed the administration of an established scale to assess the interventions' perceived acceptability to family caregivers. The qualitative method involved semi-structured interviews to explore family caregivers' perceived acceptability of the interventions in greater depth, including acceptable and unacceptable aspects, in the context of their own transitional care experience. Participants were the family caregivers of a relative who had been discharged home in a rural community from an acute care hospital in Ontario, Canada.ResultsThe purposive sample included 16 participants who were mostly middle-aged women (n = 14; 87.5%) caring for a parent (n = 9; 56.3%) at high risk for hospital readmission. The mean scores on the acceptability measure were 3 or higher for all interventions, indicating that, on average, the four interventions were perceived as acceptable. In terms of acceptable aspects, four themes were identified: the interventions: 1) involve family caregivers and proactively prepare them for discharge, 2) provide clear, written, and detailed guidance, 3) place the onus on healthcare providers to initiate communication, and 4) ensure post-discharge follow-up. In terms of unacceptable aspects, one theme was identified: the physical activity intervention would be challenging to implement.DiscussionThe findings support implementing the four interventions in practice throughout the hospital-to-home transition. Healthcare providers should assess family caregivers' comfort in participating in the physical activity intervention and tailor their role accordingly.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
The history of the Californian
Lilium humboldtii
J.H.Krelage, its initial discovery and confusion in literature over its collection, distribution and naming are discussed. Neotypes are designated for ...the names
Lilium humboldtii
and
Lilium bloomerianum
Kellogg. Lectotypes are designated for the names Lilium canadense var. puberulum Torr. and L. bloomerianum var. ocellatum Kellogg.
Introduction
There are limited data on the impact of haemophilia on health status and health‐related quality of life (HRQL) in people with non‐severe (mild and moderate) haemophilia.
Aim
To evaluate ...the health status of people living with mild or moderate haemophilia.
Methods
Data on respondents with no bleeding disorder (NoBD), mild and moderate haemophilia patients were drawn from the PROBE study. Respondents were enrolled using network patient organizations. This analysis was performed as a cross‐sectional study. Primary outcomes were reported bleeding, acute and chronic pain, activities of daily living and HRQL.
Results
A total of 862 respondents with NoBD (n = 173), mild (n = 102) and moderate (n = 134) haemophilia were eligible, with a median age of 33, 42 and 43, respectively. In relation to haemophilia‐related sequalae, 53% of male and 29% of female patients with mild and 83% of males with moderate haemophilia had more than 2‐3 bleeds in the last 12 months. Reporting of acute and chronic pain is less in those with NoBD compared to the mild and moderate cohorts for both genders. Multivariate analysis demonstrates significant reductions in quality of life using VAS, EQ‐5D‐5L and PROBE for males with mild and moderate haemophilia (P ≤ .001) with only PROBE indicating a significant reduction for females with mild (P = .002).
Conclusion
People affected by mild or moderate haemophilia report a significant HRQL impact due to haemophilia‐related bleeding. Future research is needed to identify the optimal care management of patients with mild and moderate haemophilia.
The Patient Reported Outcomes, Burdens, and Experiences (PROBE) questionnaire is a patient-reported outcome tool that assesses quality of life and disease burden in people with haemophilia (PWH).
To ...assesses the test-retest reliability of PROBE when completed using the mobile phone application.
We recruited PWH, including carriers, and individuals with no bleeding disorders who attended haemophilia-related workshops or via social media. Participants completed PROBE three times (twice on the app: T1 and T2, and once on the web, T3). Test-retest reliability was analysed for T1 versus T2 (app to app, time period one) and T2 versus T3 (app to web, time period two).
We enrolled 48 participants (median age = 56 range 27-78 years). Eighteen participants (37.5%) were PWH and seven (14.6%) were carriers. On general health domain questions, we found almost perfect agreement, except for a question on the frequency of use of pain medication in the last 12 months Kappa coefficient (κ) .72 and .37 for time period one and two, respectively and any use of pain medications (κ .75) for time period two. For haemophilia-related questions, we found substantial to perfect agreement, except for the questions on the number of joint bleeds in the previous 6 months for time period one (κ .49) and the number of bleeds in the previous two weeks for time period two (κ .34).
The results demonstrate the reliability of the PROBE app. The app can be used interchangeably with the paper and web platforms for PROBE administration.
The history of the Californian
Lilium
humboldtii
J.H.Krelage, its initial discovery and confusion in literature over its collection, distribution and naming are discussed. Neotypes are designated for ...the names
Lilium
humboldtii
and
Lilium
bloomerianum
Kellogg. Lectotypes are designated for the names
Lilium
canadense
var.
puberulum
Torr. and
L.
bloomerianum
var.
ocellatum
Kellogg.
Introduction
People with inherited and long‐term conditions such as haemophilia have been shown to adapt to their levels of disability, often reporting better quality of life (QoL) than expected from ...the general population (the disability paradox).
Aim
To investigate the disability paradox in people with haemophilia in the United States by examining preference differences in health state valuations versus the general population.
Methods
We conducted a discrete choice experiment including duration to capture valuations of health states based on patient‐reported preferences. Participants indicated their preferences for hypothetical health states using the EQ‐5D‐5L, where each participant completed 15 of the 120 choice tasks. Response inconsistencies were evaluated with dominated and repeated scenarios. Conditional‐logit regressions with random sampling of the general population responses were used to match the sample of patients with haemophilia. We compared model estimates and derived preferences associated with EQ‐5D‐5L health states.
Results
After removing respondents with response inconsistencies, 1327/2138 (62%) participants remained (177/283 haemophilia; 1150/1900 general population). Patients with haemophilia indicated higher preference value for 99% of EQ‐5D‐5L health states compared to the general population (when matched on age and gender). The mean health state valuation difference of 0.17 indicated a meaningful difference compared to a minimal clinically important difference threshold of 0.07. Results were consistent by haemophilia type and severity.
Conclusion
Our findings indicated the presence of a disability paradox among patients with haemophilia, who reported higher health states than the general population, suggesting the impact of haemophilia may be underestimated if general population value sets are used.
Understanding the sustainability of age-friendly initiatives is timely, given the interest of governments worldwide in age-friendly policy and the implementation of age-friendly programs. Focussing ...on expert perspectives from 11 rural communities in the Canadian province of Newfoundland and Labrador, this study examines how limitations to the sustainability of rural age-friendly initiatives (at both the committee and program level) may affect systemic community change. An iterative collaborative qualitative analysis demonstrates that the longevity of rural age-friendly initiatives was directly limited by financial and capacity challenges. These factors created limitations of scope, in which committees often were prevented from being able to address the multi-year, comprehensive requirements of bigger-picture issues facing older adults, especially among isolated, marginalized, or vulnerable residents. Over-dependence on volunteers and on the ability of small, rural municipalities to develop age-friendly initiatives that, in urban settings, are typically created with more capacity and resources, seriously limits the long-term scope, and by extension the impact, of rural age-friendly initiatives. 'Age-friendly' is often viewed as a positive way to improve the health and quality of life of older people. However, the present findings demonstrate that often-insurmountable challenges of longevity and scope, in terms of the breadth of issues that can be addressed, faced by rural age-friendly initiatives typically do not facilitate these anticipated outcomes.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
This paper extends the burgeoning interest in emotion, health and place by investigating the emotionally complex experiences of aging and care in rural settings. Featuring a thematic analysis of 44 ...semi-structured interviews and two focus groups with older people and their carers in rural Ontario (Canada) we examine the importance and implications of emotions within and across multiple scales at which care relationships, expectations and responsibilities are negotiated. With the aim of broadening the discussion surrounding geographical dimensions of ethical care, our approach draws on feminist care ethics to understand the multifaceted ways in which emotions shape and are shaped by experiences of aging and caring at the interpersonal, household and community scales. The findings reveal how emotions are central, yet often-overlooked and even hidden within care relationships among older rural people and their carers. We argue that ethical care is contingent on recognizing and valuing the situated emotions involved in doing care work, sustaining care relationships and asking for care. In doing so, we demonstrate how qualitative research on the emotional geographies of care can contribute to the development of informed policies that are contextually sensitive and, ultimately, have the potential to build more ethical rural conditions of care.
► The link between emotion, health and place is identified as a gap in rural aging and care research. ► Feminist care ethics provides an effective lens for interpreting emotions in rural care settings, relationships and contexts. ► Implications of emotional geographies of care for the needs and rights of older people and carers in rural areas are revealed.
•The current survey displays a shifted from a Gambierdiscus to Prorocentrum and Ostreopsis.•It is hypothesized that the changes are driven by coastal eutrophication.•This succession may be linked to ...the ongoing eutrophication of the GBR lagoon.•Succession changes also changes sources of toxins for ongoing cases of CFP.
Ciguatera fish poisoning (CFP) is known to be caused by the ciguatoxins from the dinoflagellate genus Gambierdiscus, however, there is the potential for other toxins such as okadaic acid and dinophysistoxins from the genus Prorocentrum, and palytoxin from the genus Ostreopsis, to contaminate seafood. These genera may also be indicators of ecosystem health and potentially impact on coral reef ecosystems and the role they may play in the succession of coral to macroalgae dominated reefs has not been researched. Sixteen GBR field sites spanning inshore, mid-lagoon and outer lagoon (offshore) regions were studied. Samples were collected from September 2006 to December 2007 and abundance of benthic dinoflagellates on different host macroalgae and concentration of nutrients present in the water column were determined. The maximum abundance of Prorocentrum, Ostreopsis and Gambierdiscus found was 112, 793 and 50 cells per gram wet weight of host macroalgae, respectively. The average level of Dissolved Inorganic Nitrogen (DIN) in the water column across all sites (0.03mg/L) was found to be more than double the threshold critical value (0.013mg/L) for healthy coral reefs. Compared to a previous study 1984, there is evidence of a major shift in the distribution and abundance of these dinoflagellates. Inshore reefs have either of Prorocentrum (as at Green Island) or Ostreopsis (as at Magnetic Island) dominating the macroalgal surface niche which was once dominated by Gambierdiscus, whilst at offshore regions Gambierdiscus is still dominant. This succession may be linked to the ongoing eutrophication of the GBR lagoon and have consequences for the sources of toxins for ongoing cases of ciguatera.
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