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1.
Background
Increasing participation in recreational leisure activities (RLA) could be an effective vehicle for social inclusion and improvement - people's with disabilities health. Unfortunately, many barriers limit their participation in RLA. Interventions to improve access to RLA are often limited to therapeutic or adaptive sports in rehabilitation. Knowledge about the benefits of adaptive RLA in the community is still needed.Objective/Hypothesis
The aim of this study was to assess the benefits of adaptive RLA offered in the community for people with disabilities, and to document the facilitators and barriers to participation.Methods
This paper presents the qualitative results of a mixed-methods study. The participants were members with disabilities (n?=?19), volunteers (n?=?9), and staff members (n?=?8) of an organization offering various adaptive RLA in the community. Semi-structured interviews, focus groups, and naturalistic observations were conducted. The data were analyzed using an inductive content analysis approach.Results
Three overarching themes emerged from the analysis: 1) “Personal enrichment” illustrated the individual benefits experienced by the member with disabilities; 2) “Collective impact” represented the social benefits for the members and their communities; and 3) “Contributors to the RLA experience” concerned the facilitators and barriers to participation.Conclusions
Considering the numerous benefits of adaptive RLA, it is necessary to implement specific policies to support integrated community programs or accessible public transports to allow full participation of people with disabilities, thereby increasing their social inclusion. 相似文献2.
Anne C. Wheeler Amanda Wylie Adrienne Villagomez Ellen Bishop Melissa Raspa 《Disability and health journal》2019,12(2):269-277
Background
Previous research suggests that individuals with intellectual or developmental disabilities (IDD) may experience challenges accessing quality health care.Objective/Hypothesis
This study explored parent perceptions of access and quality of health care services for children with fragile X syndrome (FXS), the leading hereditary cause of intellectual/developmental disabilities.Methods
Nearly 600 primary caregivers of at least one child with FXS completed an online survey on access, barriers, and quality of health care for their family member with FXS (N?=?731).Results
In a convenience sample of well-educated and affluent caregivers, the majority did not report experiencing difficulties with access to services. Caregivers of younger children and those with lower family incomes reported greater challenges with health care access. Nearly 40% of caregivers indicated that their child's PCP was not as knowledgeable about FXS-related needs as they would prefer, indicating a possible knowledge gap on the part of providers.Conclusions
These factors represent potential barriers to quality health care for individuals with FXS, with potential lifelong effects ranging from delayed age of diagnosis to difficulty accessing a PCP in adulthood. 相似文献3.
Background
This research deals with the way people create discourses around disability, which shape the community's concept of disability.Objective
The purpose of this article is to find out how the community configures "disability", in particular by understanding the ideas, needs and strategies that the community uses towards people with disabilities. Specifically, different roles have been involved, such as professionals, volunteers, family members and citizens. The final aim is intervening on the discourses that can contrast the full personal fulfilment of people with disabilities and social inclusion.Methods
This paper relates to discursive psychology's theoretical references and makes use of the Methodology of Textual Analysis. The tools we used include investigation protocols specially designed to detect text both through manual "pencil and paper" and computerized denominations.Results
The results show that those who are in direct contact with people with disabilities (volunteers and family members) are more exposed to treating them as disabled, making the deficit coincide with the person and also have a more judgemental approach.Conclusions
From the results obtained we can see which practices can be activated to facilitate the network between the various roles in order to implement inclusive interventions and help those more exposed to prejudices. 相似文献4.
Background
In recognition of the importance of services and supports that are defined and chosen by the recipient with disabilities, there has been a shift toward person-centered services. Quality person-centered services not only aim to ensure people have control over their own lives, but also to improve individually defined outcomes.Objective
The aim of this study was to explore the relationships between people with disabilities (PWD) choosing their services and their quality of life (QOL).Methods
We had two main research questions: 1) what factors predict PWD choosing their services – who was most/least likely to choose their services?; and, 2) how does choosing their services impact the QOL of PWD? To examine these questions, we analyzed Personal Outcome Measures® interviews from approximately 1100 PWD.Results
Our findings have revealed that when PWD are able to choose their services, the impact can be widespread.Conclusions
By ensuring PWD are able to choose their services, organizations are not only facilitating self-determination, but, ultimately, improving PWD's QOL. 相似文献5.
Sascha R. Bolt Laura Verbeek Judith M.M. Meijers Jenny T. van der Steen 《Journal of the American Medical Directors Association》2019,20(3):268-272
Objectives
To examine family caregivers' experiences with end-of-life care for nursing home residents with dementia and associations with the residents dying peacefully.Design
A secondary data analysis of family caregiver data collected in the observational Dutch End of Life in Dementia (DEOLD) study between 2007 and 2010.Setting and participants
Data were collected at 34 Dutch nursing homes (2799 beds) representing the nation. We included 252 reports from bereaved family members of nursing home residents with dementia.Measures
The primary outcome was dying peacefully, assessed by family members using an item from the Quality of Dying in Long-term Care instrument. Unpleasant experiences with end-of-life care were investigated using open-ended questions. Overall satisfaction with end-of-life care was assessed with the End-of-Life Satisfaction With Care (EOLD-SWC) scale, and families' appraisal of decision making was measured with the Decision Satisfaction Inventory. Associations were investigated with multilevel linear regression analyses using generalized estimating equations.Results
Families' reports of unpleasant experiences translated into 2 themes: neglect and lack of respect. Neglect involved facing inaccessibility, disinterest, or discontinuity of relations, and negligence in tailored care and information. Lack of respect involved perceptions of being purposefully disregarded, an insensitive approach towards resident and family, noncompliance with agreements, and violations of privacy. Unpleasant experiences with end-of-life care were negatively associated with families' perceptions of the resident dying peacefully. Families' assessment of their relative dying peacefully was positively associated with satisfaction with end-of-life care and decision making.Conclusions/Implications
Families' reports of unpleasant experiences with end-of-life care may inform practice to improve perceived quality of dying of their loved ones. Humane and compassionate care and attention from physicians and other staff for resident and family may facilitate recollections of a peaceful death. 相似文献6.
Julia Thornton Snider Jesse Sussell Mahlet Gizaw Tebeka Alicia Gonzalez Joshua T. Cohen Peter Neumann 《Value in health》2019,22(3):332-339
Background
Payers frequently rely on budget impact model (BIM) results to help determine drug coverage policy and its effect on their bottom line. It is unclear whether BIMs typically overestimate or underestimate real-world budget impact.Objective
We examined how different modeling assumptions influenced the results of 6 BIMs from the Institute for Clinical and Economic Review (ICER).Study Design
Retrospective analysis of pharmaceutical sales data.Methods
From ICER reports issued before 2016, we collected estimates of 3 BIM outputs: aggregate therapy cost (ie, cost to treat the patient population with a particular therapy), therapy uptake, and price. We compared these against real-world estimates that we generated using drug sales data. We considered 2 classes of BIM estimates: those forecasting future uptake of new agents, which assumed “unmanaged uptake,” and those describing the contemporaneous market state (ie, estimates of current, managed uptake and budget impact for compounds already on the market).Results
Differences between ICER's estimates and our own were largest for forecasted studies. Here, ICER's uptake estimates exceeded real-world estimates by factors ranging from 7.4 (sacubitril/valsartan) to 54 (hepatitis C treatments). The “unmanaged uptake” assumption (removed from ICER's approach in 2017) yields large deviations between BIM estimates and real-world consumption. Nevertheless, in some cases, ICER's BIMs that relied on current market estimates also deviated substantially from real-world sales data.Conclusions
This study highlights challenges with forecasting budget impact. In particular, assumptions about uptake and data source selection can greatly influence the accuracy of results. 相似文献7.
Colleen M. Heflin Claire E. Altman Laura L. Rodriguez 《Disability and health journal》2019,12(2):220-226
Background
Households with a disabled adult are disproportionately food insecure, yet the mechanisms linking food insecurity to disability are under-specified.Objective
To develop and empirically examine a model of the potential pathways connecting specific types of disability with food insecurity.Methods
With pooled, repeated cross-sectional National Health and Nutrition Examination Survey data (1999–2014) including 38,354 participants, we ran probit models to estimate the probability of being food insecure as a function of different sets of disability measures and our control variables. We explored the extent to which these patterns differed for prime-aged individuals (19–59) from those age 60 and older.Results
Work-limiting disabilities, functional limitations, and trouble managing money were associated with an increased likelihood of food insecurity for both prime-aged and older individuals, net of other forms of disability. Mobility limitations, trouble seeing, and trouble hearing increased the likelihood of food insecurity for prime-aged individuals only.Conclusion
These findings suggest that disabilities are associated with food insecurity through multiple pathways. Revised public health and policy solutions are needed to address the high rates of food insecurity among those with disabilities. 相似文献8.
Nicole Fran Kahn Chirayath M. Suchindran Carolyn Tucker Halpern 《Disability and health journal》2019,12(2):155-163
Background
Timing of first sex has important implications for later sexual health, but little research has considered this in populations with physical disabilities.Objective
The purpose of this paper was to examine timing of sexual experiences among populations with physical disabilities in the United States from adolescence to early adulthood, and how timing varies by biological sex, race/ethnicity, and sexual orientation. We hypothesized that those with physical disabilities would exhibit earlier initiation of each type of sexual activity compared to those without disabilities, but the degree of differences would depend on disability severity. We further hypothesized that these associations would be moderated by biological sex, race/ethnicity, and sexual orientation.Methods
Data were from 13,458 respondents to Waves I and IV of the National Longitudinal Study of Adolescent to Adult Health. Cox proportional hazards models assessed differences in timing of vaginal, oral, anal, and first sex by disability severity.Results
Populations with the most severe physical disabilities had a significantly slower progression to first vaginal sex, oral sex, and their first sexual experience compared to those without disabilities (aHR: 0.74–0.77). Timing also differed by biological sex, race/ethnicity, and sexual orientation, though the direction and degree of these differences varied by disability severity.Conclusions
Results fill an important gap in the literature by considering variations in sexual timing among populations with physical disabilities using a longitudinal, nationally representative sample. Future research should continue to promote inclusion of populations with disabilities to inform future policies and programs for healthy sexual development. 相似文献9.
Willi Horner-Johnson Esther L. Moe Ryan C. Stoner Krystal A. Klein Alison B. Edelman Karen B. Eden Elena M. Andresen Aaron B. Caughey Jeanne-Marie Guise 《Disability and health journal》2019,12(2):139-154
Background
Women spend most of their reproductive years avoiding pregnancy. However, we know little about contraceptive knowledge and use among women with disabilities, or about strategies to improve contraceptive knowledge and decision-making in this population.Objective
To systematically review published literature on women with disabilities and: 1) contraceptive knowledge; 2) attitudes and preferences regarding contraception; 3) contraceptive use; 4) barriers and facilitators to informed contraceptive use; and 5) effectiveness of interventions to improve informed contraceptive decision-making and use.Methods
We searched MEDLINE, PsychINFO, the Cochrane Library, CINAHL, and ERIC databases from inception through December 2017. Two reviewers independently reviewed studies for eligibility, abstracted study data, and assessed risk of bias following PRISMA guidance.Results
We reviewed 11,659 citations to identify 62 publications of 54 unique studies (total n of women with disabilities?=?21,246). No standard definition of disability existed across studies. The majority of studies focused on women with intellectual disabilities (ID). Women with ID and those who were deaf or hard-of-hearing had lower knowledge of contraceptive methods than women without disabilities. Estimates of contraceptive use varied widely, with some evidence that women with disabilities may use a narrower range of methods. Five of six studies evaluating educational interventions to increase contraceptive knowledge or use reported post-intervention improvements.Conclusions
Women with disabilities may use a more narrow mix of contraceptive methods and are often less knowledgeable about contraceptives than women without disabilities. Interventions to improve knowledge show some promise. A lack of data exists on contraceptive preferences among women with disabilities. 相似文献10.
Silvia Gonella Ines Basso Valerio Dimonte Barbara Martin Paola Berchialla Sara Campagna Paola Di Giulio 《Journal of the American Medical Directors Association》2019,20(3):249-261
Objective
Less aggressive end-of-life (EOL) care has been observed when health care professionals discuss approaching EOL and preferences about life-sustaining treatments with nursing home (NH) residents or their families. We performed a comprehensive systematic review to evaluate the association between health care professionals–residents and health care professionals–family EOL conversations and EOL care outcomes.Design
Systematic review with meta-analysis.Setting and Participants
Seven databases were searched in December 2017 to find studies that focused on health care professionals–residents (without oncologic disease) and health care professionals–family EOL conversations and aimed to explore the impact of EOL conversations on resident's or family's EOL care outcomes.Measures
Random effects meta-analyses with subsequent quality sensitivity analysis and meta-regression were performed to assess the effects of EOL conversations on the decision to limit or withdraw life-sustaining treatments. A funnel plot and Eagger test were used to assess publication bias.Results
16 studies were included in the qualitative and 7 in the quantitative synthesis. Health care professionals–family EOL conversations were positively associated with the family's decision to limit or withdraw life-sustaining treatments (odds ratio = 2.23, 95% confidence interval: 1.58-3.14).The overall effect of health care professionals–family EOL conversations on the family's decision to limit or withdraw life-sustaining treatments remained stable in the quality sensitivity analysis. In the meta-regression, family members with a higher level of education were less influenced by EOL conversations with health care professionals when making decisions about limiting or withdrawing life-sustaining treatments. No publication bias was detected (P = .4483).Conclusions/Implications
This systematic review shows that EOL conversations promote palliative care. Structured conversations aimed at exploring NH resident preferences about EOL treatment should become routine. NH administrators should offer health care professionals regular training on EOL conversations, and resident-centered care that involves residents and their families in a shared decision-making process at EOL needs to be promoted. 相似文献11.
Paolo Dionigi Rossi Sarah Damanti Carolina Nani Mauro Pluderi Giulio Bertani Daniela Mari Matteo Cesari Dario Consonni Diego Spagnoli 《Journal of the American Medical Directors Association》2019,20(3):373-376.e3
Objectives
To evaluate the effects of repeated cerebrospinal fluid (CSF) tap procedures in idiopathic normal pressure hydrocephalus (iNPH) patients ineligible for surgical treatment.Design
Prospective, monocentric, pilot study.Setting
University hospital.Participants
Thirty-nine patients aged 75 years and older, ineligible for shunting surgical intervention.Intervention
Repeated CSF taps.Measurements
All patients underwent a comprehensive geriatric assessment before and after each CSF tap. Adverse events were recorded.Results
No major side effect was reported. Eleven patients showed no response to the first CSF tap test and were excluded. In the remaining 28 patients, all physical and cognitive functions improved after the drainage procedures, except for continence (which seemed poorly influenced). According to clinical judgment, the mean time frame of benefit between CSF taps was 7 months. Patients withdrawing from the protocol during the clinical follow-up showed a worsening of functional and cognitive performances after the interruption.Conclusions/Implications
Periodic CSF therapeutic taps are safe, allow a better control of iNPH symptoms, and prevent functional decline in geriatric patients. 相似文献12.
Christina Chauvenet Molly De Marco Carolyn Barnes Alice S. Ammerman 《Journal of the Academy of Nutrition and Dietetics》2019,119(3):416-424.e2
Background
The Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) program is an important intervention for prevention and treatment of obesity and food insecurity, but participation has dropped among eligible populations from 2009 to 2015. Program satisfaction is integral to participant retention, and the retail experience is a vital component of program satisfaction.Objective
This article applies behavioral economics principles to explore the retail experience of WIC participants and ways in which it may be improved.Design
The authors designed and conducted semistructured interviews and focus groups with WIC participants.Participants/setting
A convenience sample of WIC participants aged 18 years and older were recruited through WIC clinics in Texas, North Carolina, Oregon, and Illinois (n=55, 27 participants from four focus groups and 28 individual interviews).Statistical analysis conducted
Responses were analyzed qualitatively using principles of content analysis.Results
Challenges in identifying WIC-allowable items throughout the store as well as perceived stigmatization during the checkout process were the chief complaints. Study participants described a learning curve in successful use of WIC in retail environments over time. Study participants also reported acceptance of restrictions, such as a requirement to purchase the least expensive brand.Conclusions
Dissatisfaction with the retail experience may lead to the underutilization of WIC benefits or program exit. Behavioral economics strategies that facilitate a better shopping experience, such as creating a section for WIC items in the store or improving in-store education, may improve the retail experience for WIC customers. Further research is needed to ensure such strategies are effective and do not contribute to stigma. 相似文献13.
The relation of abuse to physical and psychological health in adults with developmental disabilities
Rosemary B. Hughes Susan Robinson-Whelen Dora Raymaker Emily M. Lund Mary Oschwald Marsha Katz Albert Starr Elesia Ashkenazy Laurie E. Powers Christina Nicolaidis 《Disability and health journal》2019,12(2):227-234
Background
People with developmental disabilities are at disproportionately high risk of abuse. Although considerable evidence exists on the health-related consequences of abuse in the general population, little is known about those consequences in people with developmental disabilities.Objective
To examine the relation of abuse with psychological and physical health outcomes in adults with developmental disabilities.Methods
We used an accessible audio computer-assisted self-interview to collect anonymous data on demographic and disability characteristics, childhood and adult abuse experiences, and physical and psychological health from 350 women and men with developmental disabilities. Abuse experience was reflected by five factor scores consisting of three child abuse factors (childhood sexual abuse, childhood physical abuse, childhood disability-related abuse) and two adult abuse factors (adult sexual abuse, adult mixed abuse). We examined each of four health outcomes (depression, post trraumatic stress disorder, physical health symptoms, secondary health conditions) separately to determine the extent to which childhood and adult abuse experiences uniquely predicted psychological and physical health outcomes above and beyond demographic and disability-related characteristics.Results
All five abuse factor scores were significantly related to all four health outcomes. When examined simultaneously, childhood disability-related abuse and adult mixed abuse accounted for unique variance in outcomes. Exploratory analyses revealed no difference in the impact of abuse by gender.Conclusions
In this study, childhood disability-related abuse and adult mixed abuse significantly predicted lower levels of psychological and physical health in a sample of adults with developmental disabilities. Our findings highlight the importance of addressing abuse and its sequalae in the developmental disabilities community. 相似文献14.
Teresa Botigué Olga Masot Jèssica Miranda Carmen Nuin Maria Viladrosa Ana Lavedán Sandra Zwakhalen 《Journal of the American Medical Directors Association》2019,20(3):317-322
Objective
The aim of this study was to determine the prevalence of low fluid intake in institutionalized older residents and the associated factors.Design
This was a cross-sectional study.Setting and Participants
The study was carried out at a nursing home with a capacity for 156 residents, all of whom were older than 65 years.Measures
Data were collected on the fluids consumed by each resident over a period of 1 week. Information relating to sociodemographic variables and to residents' health, nutrition, and hydration status was also collected.Results
Of 53 residents, 34% ingested less than 1500 mL/d. The factors with the greatest correlation associated with low fluid intake were cognitive and functional impairment, the risk of suffering pressure ulcers, being undernourished, a texture-modified diet, dysphagia, impaired swallowing safety, and BUN:creatinine ratio.Conclusions/Implications
The results obtained highlight the scale of low fluid intake in nursing homes and also aid to identify and understand the factors associated with this problem. The findings could help us to develop specific strategies to promote the intake of liquids and thereby reduce the incidence of dehydration in nursing homes. 相似文献15.
Joan Úbeda-Colomer José Devís-Devís Cindy H.P. Sit 《Disability and health journal》2019,12(2):278-286
Background
Despite the positive effects of regular physical activity (PA), university students with disabilities are less active than their able-bodied peers, which could be due to the wide range of barriers to PA that these individuals face across all social ecological levels.Objective
To identify the barriers to PA experienced by university students with disabilities at the different social ecological levels and to examine the differences in these barriers by sociodemographic variables.Methods
The reduced Spanish version of the Barriers to Physical Activity Questionnaire for People with Mobility Impairments was administered to a sample of 1219 Spanish university students with disabilities. Non-parametric tests were performed to examine the differences in the barriers experienced by sociodemographic variables.Results
The most important barriers were intrapersonal (e.g. fatigue, pain, lack of motivation), followed by organizational ones (e.g. lack of adapted programs, economic cost). At the interpersonal level, the inactivity of friends and family were the main barriers. Potholes in the streets or other public spaces were found to be the most important barriers at the community level. Significant differences were found in barriers by sex, age, disability grade, congenital-acquired disability and disability type. The groups most affected by the barriers were, in general, those with multiple disabilities and higher disability grade.Conclusions
The results indicate the need for PA promotion programs to be implemented for university students with disabilities addressing the most important barriers found at each social ecological level, as well as the differences identified by sociodemographic variables. 相似文献16.
17.
Margaretha de Looze Frank J. Elgar Candace Currie Petra Kolip Gonneke W.J.M. Stevens 《The Journal of adolescent health》2019,64(5):657-663
Purpose
Sex differences in adolescent health are widely documented, but social explanations for these sex differences are scarce. This study examines whether societal gender inequality (i.e., men's and women's unequal share in political participation, decision-making power, economic participation, and command over resources) relates to sex differences in adolescent physical fighting, physical activity, and injuries.Methods
National-level data on gender inequality (i.e., the United Nations Development Program's Gender Inequality Index) were linked to health data from 71,255 15-year-olds from 36 countries in the 2009–2010 Health Behaviour in School-Aged Children study. Using multilevel logistic regression analyses, we tested the association between gender inequality and sex differences in health while controlling for country wealth (gross domestic product per capita).Results
In all countries, boys reported more physical fighting, physical activity, and injuries than girls, but the magnitude of these sex differences varied greatly between countries. Societal gender inequality positively related to sex differences in all three outcomes. In more gender unequal countries, boys reported higher levels of fighting and physical activity compared with boys in more gender equal countries. In girls, scores were consistently low for these outcomes; however, injury was more common in countries with less gender inequality.Conclusions
Societal gender inequality appears to relate to sex differences in some adolescent health behaviors and may contribute to the establishment of sex differences in morbidity and mortality. To reduce inequalities in the health of future generations, public health policy should target social and cultural factors that shape perceived gender norms in young people. 相似文献18.
Background
The National Health Interview Survey (NHIS) is changing the annual inclusion of standardized disability identifiers, reinvigorating the priority to examine existing disability question sets. These sets include questions developed by the United States (U.S.) National Center for Health Statistics in conjunction with the U.S. Census Bureau (the American Community Survey questions, ACS) and United Nations (the Washington Group Short Set questions, WGSS), that are policy relevant, comparable across populations, and short enough to be included in censuses and surveys across countries.Objective
To compare disability prevalence estimates from federal and international standardized disability questions across demographic factors.Methods
Bivariate analysis of disability question sets asking adults about vision, hearing, ambulation, cognition, and self-care difficulties and demographic factors using secondary data from supplements in the 2010 and 2013–2015 NHIS.Results
Our study found substantial and statistically significant differences in the percentage of disabilities (overall and by type) based on comparable ACS and WGSS questions across demographic categories. Dependent on response coding, WGSS-based disability prevalence was consistently and significantly larger or smaller than ACS-based disability prevalence. Overall disability prevalence using ACS and two different WGSS response combinations were 16.3% and 9.2% or 39.4%, respectively.Conclusion
ACS and WGSS measures identify predictably different sized populations of adults with disabilities. Further, with some exceptions, ACS and WGSS questions identify populations with disabilities with relatively consistent demographic factors. Additional research is recommended to understand the comparability of disability prevalence and health disparities and inequities people with disabilities experience when using these measures. 相似文献19.
Tamara Sussman Sharon Kaasalainen Eunyoung Lee Noori Akhtar-Danesh Patricia H. Strachan Kevin Brazil Robin Bonifas Valérie Bourgeois-Guérin Patrick Durivage Alexandra Papaioannou Laurel Young 《Journal of the American Medical Directors Association》2019,20(3):262-267
Objectives
This article reports findings on the usability and staff use of 5 condition- specific pamphlets of high prevalence in long-term care (LTC): dementia, heart failure, chronic obstructive pulmonary disease, renal failure, and frailty. The pamphlets were created in response to residents', families', and staff's recommendations for activating early reflections and communication about end-of-life care.Design
A mixed-method (qualitative and quantitative) survey design was used. Step 1 collected survey data on the usability of the pamphlets. Step 2 collected survey data on pamphlet use.Settings and Participants
Two nurses with specialized palliative care training, 2 resident/family representatives, 10 condition-specific specialists, and 33 LTC palliative leads reviewed the pamphlets for usability prior to distribution. A total of 178 LTC home staff in 4 participating LTC homes reported on pamphlet use.Measures
Specialists and resident/family representatives were asked to provide open comments and LTC home palliative leads were asked to complete a survey on the accuracy, readability, and relevance of the pamphlets. After 6 months of distribution, all staff in participating LTC homes were asked to complete a survey on pamphlet use, usefulness, and comfort with distribution.Results
The pamphlets were reportedly accurate, relevant, and easy to understand. Following 6 months of availability, most staff in LTC had read the pamphlets, found the information useful, and planned to share them. However, half of the staff questioned their role in pamphlet distribution and most had not distributed them. Regulated staff (ie, staff affiliated with a regulated profession) expressed more comfort sharing the pamphlets than care aides and support staff.Conclusions/Implications
Condition-specific pamphlets appear to hold promise in providing residents and families with relevant information that may activate early reflections and conversations about end-of-life care. However, structured implementation strategies, training, and discussions are required to improve staff comfort with distribution and explore roles in distribution and follow-up. 相似文献20.
Selena Russo Chiara Jongerius Flavia Faccio Silvia F.M. Pizzoli Cathy Anne Pinto Jorien Veldwijk Rosanne Janssens Gwenda Simons Marie Falahee Esther de Bekker-Grob Isabelle Huys Douwe Postmus Ulrik Kihlbom Gabriella Pravettoni 《Value in health》2019,22(4):491-501