Journal articles on the topic 'Live-in Caregiver Program (Canada)'
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Salami, Bukola, and Salima Meherali. "One of the family? Familial and professional relationships between migrant live-in caregivers and their employers." International Journal of Migration, Health and Social Care 14, no. 2 (June 11, 2018): 174–85. http://dx.doi.org/10.1108/ijmhsc-09-2016-0034.
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PurposeMany families in the developed world hire live-in caregivers to meet their childcare and elder care needs. Given the spatial arrangements – i.e., that the caregiver lives with her employer – relationships between employers and live-in caregivers can develop into family-like relationships. The purpose of this paper is to draw on data from two Canadian studies to examine the relationships between migrant live-in caregivers and their employers.Design/methodology/approachThe first study focused on the live-in caregivers in Canada. Semi-structured interviews were conducted with 15 Filipina nurses who migrated to Canada through the Live-in Caregiver Program. The second study was a pilot descriptive study that included interviews of recruiter groups and employers of live-in caregivers. Data were thematically analyzed, aided by NVivo software.FindingsThe studies indicate that some live-in caregivers prefer to be treated as one of the family, while others prefer to have a strictly professional employer/employee relationship. Their employers are similarly divided. The authors identify reciprocity and respect as important ingredients for healthy relationships between live-in caregivers and their employers. Without these key ingredients, relationships between employers and live-in caregivers can be exploitative, especially given the unequal power inherent in the relationship.Research limitations/implicationsFurther studies are needed to better understand how these relationships evolve over time and in space.Practical implicationsThere is a need to create policies to further prevent exploitation of live-in caregivers within an unfavorable employee or familial relationship.Originality/valueThis study provides useful insight into the development of knowledge on relationships between live-in caregivers and employers.
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Gyapay, Julia, Shannon Freeman, and Donna Flood. "An Environmental Scan of Caregiver Support Resources Provided by Hospice Organizations." Journal of Palliative Care 35, no. 3 (December 15, 2019): 135–42. http://dx.doi.org/10.1177/0825859719883841.
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Background: Informal caregiver support programs offered by hospice organizations support the health and wellbeing of clients and caregivers. However, an understanding of the best practices for informal caregiver support programs currently undertaken across Canada remains unknown, particularly across the province of British Columbia. Aim: The aim of the present study was to describe what existing resources and supports are provided by hospice organizations for informal caregivers of persons who are nearing end of life or who are recently bereaved in British Columbia, Canada. Methods: In this descriptive study, two thirds of hospice organizations (N = 42/66; 26 urban, 16 rural) participated in a semi-structured telephone interview focused on informal caregiver support programs. All interviews were recorded, transcribed and analyzed thematically and descriptive statistics were employed. Findings: While no one-size-fit-all caregiver support program emerged as a gold standard across all hospice organizations, nearly two thirds (n = 26/42) offered one or more informal caregiver support programs. Four categories of caregiver support programs emerged from the data analysis, including companioning, bereavement and grief supports, education and service supports, and respite for caregivers. Conclusion: Caregiver support programs are a valuable service provided by some but not all hospice organizations across British Columbia, Canada. Future studies are needed to determine best methods for hospice organizations to formally assess caregivers’ needs and to determine the success and effectiveness of such programs in support of program expansion and evaluation.
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Brickner, Rachel K., and Christine Straehle. "The missing link: Gender, immigration policy and the Live-in Caregiver Program in Canada." Policy and Society 29, no. 4 (November 2010): 309–20. http://dx.doi.org/10.1016/j.polsoc.2010.09.004.
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Routh, Supriya. "Revisiting Social Reproduction: Migrant Care Workers and Their Entitlements in Canada." International Journal of Comparative Labour Law and Industrial Relations 35, Issue 2 (June 1, 2019): 201–26. http://dx.doi.org/10.54648/ijcl2019010.
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In this article, I question the temporary/permanent divide insofar as migrant care workers’ legal entitlements are concerned with reference to the Canadian Caregiver Program, which is characterized as one of the best temporary migrant worker programs globally. I problematize the temporary/permanent distinction by critiquing the private market exchange-based relationship on the basis of which the Program is legally formulated. I argue that any caregiver program should see caregivers – irrespective of their national or foreign origin – as fully contributory members of society and thereby entitled to an extensive range of citizenship rights and entitlements. While this proposal is not completely novel, what I offer through this article is a regulatory justification for migrant caregivers’ claim to full socio-economic citizenship rights and entitlements. I develop this justification by drawing on – and reconceptualizing – the economic productivity-focused social reproduction perspective. In this article, then, I make two points: first, I propose a theoretical reconceptualization of socially reproductive work and, second, by evaluating migrant care workers’ status in Canada, I argue that on the basis of social reciprocity, caregivers cannot be considered temporary insofar as their entitlements are concerned.
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St-Amant, Oona, Mandana Vahabi, Josephine Pui-Hing Wong, Bukola Salami, Kenneth Fung, Jovana Miholjcic, and Valerin Tan. "Invisible diaspora: A scoping review of migrant caregivers’ social integration trajectory." International Health Trends and Perspectives 1, no. 1 (April 4, 2021): 44–60. http://dx.doi.org/10.32920/ihtp.v1i1.1419.
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Background: The Canadian Caregiver program, initiated in 1992, functions to conceal the inadequate public policy and programs on child and elder care in Canada. Consequently, migrant caregivers have become an invisible diaspora filling a domestic labour gap with few protections.
Aim and Methods: This scoping review aims to identify the systemic barriers that undermine social integration of migrant caregivers. We searched ten publication index databases from 2001-2020. We retrieved 1,624 articles, after accounting for exclusion criteria, 22 peer-reviewed articles were selected for this review representing migrant women across Canada who are and/or were part of the program.
Results: Four key barriers were identified: economic exploitation, deskilling and downward occupational mobility, asymmetrical accountability, and social isolation.
Conclusion: Discriminatory policies and hidden exploitative employment practices of the Canadian Caregiver program perpetuate a cycle of marginalization. This review also found that community support groups and alliances function to promote resilience among migrant caregivers through community advocacy.
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Salami, Bukola, Sioban Nelson, Linda Mcgillis Hall, Carles Muntaner, and Lesleyanne Hawthorne. "Workforce Integration of Philippine-Educated Nurses who Migrate to Canada through the Live-in Caregiver Program." Canadian Journal of Nursing Research 46, no. 4 (December 2014): 65–82. http://dx.doi.org/10.1177/084456211404600406.
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Huisken, Anne, Joan L. Bottorff, and Catherine Nesmith. "Evaluating the feasibility and acceptability of the Healthy Together program for immigrant and refugee families in Canada." International Journal of Migration, Health and Social Care 17, no. 4 (November 1, 2021): 487–99. http://dx.doi.org/10.1108/ijmhsc-12-2019-0101.
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Purpose Healthy Together (HT) is an innovative family education program focused on bringing families together to promote physical activity and healthy eating. The HT program was implemented in 10 community-based organizations across Canada offering services to immigrant and refugee families. The purpose of this study was to explore the feasibility and acceptability of HT when offered to these families. Design/methodology/approach A cross-sectional, non-comparative design was used. Caregiver participants were invited to complete a survey at the end of 15, 30 or 24 HT sessions. Trained program facilitators and directors of community-based organizations also provided feedback on the program. Findings Among the 203 caregiver participants, 135 (64%) were born outside of Canada. These caregivers were more likely to attend 50% or more of the HT sessions than Canadian-born caregivers. Survey responses show that the HT program was acceptable to immigrant and refugee caregivers and held important benefits for families including positive changes in healthy eating and physical activity, strengthening social connections and learning about community services and resources. Areas for enhancing the HT program for immigrant and refugee families were identified by participant caregivers and community organizations delivering the program. Practical implications The HT program demonstrates the value of family-centered program models in supporting immigrant and refugee families in establishing healthy lifestyles and building social connections in ways that hold promise for long-term impact. Originality/value The HT program model demonstrates strong potential to fill gaps in community programming for immigrant and refugee families. Although focused on promoting healthy lifestyles, the program extends additional benefits that can positively influence resettlement trajectories. The findings contribute to the growing field of implementation studies that are focused on expanding the reach and impact of community health interventions in a real-world setting while reaching multiple target populations.
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Fung, Kenneth Po-Lun, Mandana Vahabi, Masoomeh Moosapoor, Abdolreza Akbarian, Jenny Jing-Wen Liu, and Josephine Pui-Hing Wong. "Implementation of an Internet-Based Acceptance and Commitment Therapy for Promoting Mental Health Among Migrant Live-in Caregivers in Canada: Protocol." JMIR Research Protocols 10, no. 9 (September 13, 2021): e31211. http://dx.doi.org/10.2196/31211.
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Background Psychological distress, isolation, feelings of powerlessness, and limited social support are realities faced by temporary migrant live-in caregivers in Canada. Furthermore, they experience multiple barriers in accessing mental health services due to their long work hours, limited knowledge of health resources, precarious employment, and immigration status. Objective The Women Empowerment - Caregiver Acceptance & Resilience E-Learning (WE2CARE) project is a pilot intervention research project that aims to promote the mental well-being and resiliency of migrant live-in caregivers. The objectives include exploring the effectiveness of this program in achieving the following: (1) reducing psychological distress (depression, anxiety, and stress); (2) promoting committed actions of self-care; and (3) building mutual support social networks. Further, participants’ satisfaction with the intervention and their perceived barriers to and facilitators of practicing the self-care strategies embedded in WE2CARE will be examined. Methods A total of 36 live-in caregivers residing in the Greater Toronto Area will be recruited and randomly assigned to either the intervention or waitlist control group. The intervention group will receive a 6-week web-based psychosocial intervention that will be based on Acceptance and Commitment Therapy (ACT). Standardized self-reported surveys will be administered online preintervention, postintervention, and at 6 weeks postintervention to assess mental distress (Depression, Anxiety and Stress Scale), psychological flexibility (Acceptance and Action Questionnaire), mindfulness (Cognitive and Affective Mindfulness Scale – Revised), and resilience (Multi-System Model of Resilience Inventory). In addition, two focus groups will be held with a subset of participants to explore their feedback on the utility of the WE2CARE program. Results WE2CARE was funded in January 2019 for a year. The protocol was approved by the research ethics boards of Ryerson University (REB 2019-036) and the University of Toronto (RIS37623) in February and May 2019, respectively. Data collection started upon ethics approval and was completed by May 2020. A total of 29 caregivers completed the study and 20 participated in the focus groups. Data analyses are in progress and results will be published in 2021. Conclusions WE2CARE could be a promising approach to reducing stress, promoting resilience, and providing a virtual space for peer emotional support and collaborative learning among socially isolated and marginalized women. The results of this pilot study will inform the adaptation of an ACT-based psychological intervention for online delivery and determine its utility in promoting mental health among disadvantaged and vulnerable populations. International Registered Report Identifier (IRRID) DERR1-10.2196/31211
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Banerjee, Rupa, Philip Kelly, Ethel Tungohan, Petronila Cleto, Conely de Leon, Mila Garcia, Marco Luciano, Cynthia Palmaria, and Chris Sorio. "From “Migrant” to “Citizen”: Labor Market Integration of Former Live-In Caregivers in Canada." ILR Review 71, no. 4 (February 12, 2018): 908–36. http://dx.doi.org/10.1177/0019793918758301.
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This study examines the impact of attaining permanent resident status on the employment integration of migrant caregivers in Canada. The authors use survey data from 631 caregivers who arrived as migrants under a temporary foreign worker program before transitioning to permanent residency, as well as data from 47 focus group discussions. The authors find that although most caregivers do switch out of caregiving work over time, they often remain within a few, lower-skilled occupations. Postsecondary education acquired before migration has no impact on occupational mobility. Caregivers’ lack of financial stability and the stigmatization of their employment experience often constrain their labor market options; moreover, an emotional bond and sense of obligation toward employers often hinder their ability to move out into other occupations, even after receiving legal permanent resident status. From the empirical results, the authors provide theoretical insights into the complex relationship between immigration patterns and labor markets.
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Callon, Emma. "Unbalanced Scales of Global Capitalism: Analyzing Temporary Foreign Worker Programs in Canada." Canadian Graduate Journal of Sociology and Criminology 5, no. 1 (August 2, 2016): 32–43. http://dx.doi.org/10.15353/cgjsc.v5i1.3742.
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This article analyzes several characteristics of two of Canada’s Temporary Foreign Worker Programs (TFWPs): The Seasonal Agricultural Worker Program (SAWP) and the Live-in Caregiver Program (LCP). First, I consider the social and economic contexts in which these programs have emerged. Second, I discuss how these programs maintain racial and gendered hierarchies. Third, I problematize the relationship TFWPs have with citizenship status, as well as critique TFWPs as a long-term solution to Canadian labour shortages. Last, I discuss the potential benefits of these TFWPs and suggest alternatives and potential improvements to the programs. Using a Marxist framework, this analysis situates Canada’s TFWPs within the broader political economy and argues that global capitalism and the state interact to serve the people and economies of the Global North at the expense of migrant workers from the Global South. Cet article examine deux programmes des travailleurs étrangers temporaires (PTET) du Canada: le Programme des travailleurs agricoles saisonniers (PTAS) et le Programme concernant les aides familiaux résidants (PAFR). Cet essai examine plusieurs aspects des PTET. Premièrement, je tiens compte du contexte social et économique dans lequel ces programmes sont apparus. Deuxièmement, j’explique comment ces programmes maintiennent une hiérarchie basée sur la race et le sexe. Troisièmement, je pose le problème des relations entre les PTET et le statut de citoyen, et je formule également une critique du PTET comme solution à long terme à la pénurie de main-d’œuvre canadienne. Enfin, je discute des avantages potentiels de ces PTET et propose des solutions de rechange et des façons d’améliorer les programmes. À l’aide d’un cadre d’analyse marxiste, les PTET du Canada sont évalués globalement dans le contexte de l’économie politique et il est proposé que le capitalisme mondial et l’État interagissent au service des citoyens et des économies de l’hémisphère nord, au détriment des travailleurs migrants en provenance de l’hémisphère sud.
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Allen, L., M. Richardson, A. McIntyre, S. Janzen, M. Meyer, D. Ure, D. Willems, and R. Teasell. "Community Stroke Rehabilitation Teams: Providing Home-Based Stroke Rehabilitation in Ontario, Canada." Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques 41, no. 6 (November 2014): 697–703. http://dx.doi.org/10.1017/cjn.2014.31.
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ABSTRACTBackground: Community stroke rehabilitation teams (CSRTs) provide a community-based, interdisciplinary approach to stroke rehabilitation. Our objective was to assess the effectiveness of these teams with respect to client outcomes. Methods: Functional, psychosocial, and caregiver outcome data. were available at intake, discharge from the program, and six-month follow-up. Repeated measures analysis of covariance was performed to assess patient changes between time points for each outcome measure. Results: A total of 794 clients met the inclusion criteria for analysis (54.4% male, mean age 68.5±13.0 years). Significant changes were found between intake and discharge on the Hospital Anxiety and Depression Scale total score (p=0.017), Hospital Anxiety and Depression Scale Anxiety subscale (p<0.001), Functional Independence Measure (p<0.001), Reintegration to Normal Living Index (p=0.01), Bakas Caregiver Outcomes Scale (p<0.001), and Caregiver Assistance and Confidence Scale assistance subscale (p=0.005). Significant gains were observed on the strength, communication, activities of daily living, social participation, memory, and physical domains of the Stroke Impact Scale (all p<0.001). These improvements were maintained at the 6-month follow-up. No significant improvements were observed upon discharge on the memory and thinking domain of the Stroke Impact Scale; however, there was a significant improvement between admission and follow-up (p=0.002). All significant improvements were maintained at the 6-month follow-up. Conclusions: Results indicate that the community stroke rehabilitation teams were effective at improving the functional and psychosocial recovery of patients after stroke. Importantly, these gains were maintained at 6 months postdischarge from the program. A home-based, stroke-specific multidisciplinary rehabilitation program should be considered when accessibility to outpatient services is limited.
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Levinson, Anthony J., Stephanie Ayers, Lianna Butler, Alexandra Papaioannou, Sharon Marr, and Richard Sztramko. "Barriers and Facilitators to Implementing Web-Based Dementia Caregiver Education From the Clinician’s Perspective: Qualitative Study." JMIR Aging 3, no. 2 (October 2, 2020): e21264. http://dx.doi.org/10.2196/21264.
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Background Internet-based dementia caregiver interventions have been shown to be effective for a range of caregiver outcomes; however, little is known about how to best implement them. We developed iGeriCare, an evidence-based, multimedia, web-based educational resource for family caregivers of people living with dementia. Objective This study aims to obtain feedback and opinions from experts and clinicians involved in dementia care and caregiver education about 1 iGeriCare and 2 barriers and facilitators to implementing a web-based caregiver program. Methods We carried out semistructured interviews with individuals who had a role in dementia care and/or caregiver education in several key stakeholder settings in Southern Ontario, Canada. We queried participants’ perceptions of iGeriCare, caregiver education, the implementation process, and their experience with facilitators and barriers. Transcripts were coded and analyzed using a grounded theory approach. The themes that emerged were organized using the Consolidated Framework for Implementation Research. Results A total of 12 participants from a range of disciplines described their perceptions of iGeriCare and identified barriers and facilitators to the implementation of the intervention. The intervention was generally perceived as a high-quality resource for caregiver education and support, with many stakeholders highlighting the relative advantage of a web-based format. The intervention was seen to meet dementia caregiver needs, partially because of its flexibility, accessibility, and compatibility within existing clinical workflows. In addition, the intervention helps to overcome time constraints for both caregivers and clinicians. Conclusions Study findings indicate a generally positive response to the use of internet-based interventions for dementia caregiver education. Results suggest that iGeriCare may be a useful clinical resource to complement traditional face-to-face and print material–based caregiver education. More comprehensive studies are required to identify the effectiveness and longevity of web-based caregiver education interventions and to better understand barriers and facilitators with regard to the implementation of technology-enhanced caregiver educational interventions in various health care settings.
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Tucker, Eric. "Migrant workers and fissured workforces: CS Wind and the dilemmas of organizing intra-company transfers in Canada." Economic and Industrial Democracy 41, no. 2 (June 7, 2017): 372–96. http://dx.doi.org/10.1177/0143831x17707822.
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Canadian temporary foreign worker programs have been proliferating in recent years. While much attention has deservedly focused on programs that target so-called low-skilled workers, such as seasonal agricultural workers and live-in caregivers, other programs have been expanding, and have recently been reorganized into the International Mobility Program (IMP). Streams within the IMP are quite diverse and there are few legal limits on their growth. One of these, intra-company transfers (ICTs), is not new, but it now extends beyond professional and managerial workers to more permeable and expansive categories. As a result, unions increasingly face the prospect of organizing workplaces where ICTs and other migrant workers are employed alongside permanent employees, raising difficult legal issues and strategic dilemmas. This article presents a detailed case study of one union’s response to this situation.
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Shire, Stephanie Y., Wendy Shih, Terri Barriault, and Connie Kasari. "Exploring coaching and follow-up supports in community-implemented caregiver-mediated JASPER intervention." Autism 26, no. 3 (December 28, 2021): 654–65. http://dx.doi.org/10.1177/13623613211066132.
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Although a growing number of caregiver-mediated intervention models for families with children with autism are being examined in efficacy trials, few have been transferred to community implementation. Furthermore, little testing has explored implementation strategies to support caregivers’ strategy use with their children. In partnership with a publicly funded intervention agency in Canada, this pilot project explored intervention implementation strategies and follow-up supports. Dyads were randomized at entry to coaching or observe then add coaching and at intervention exit to individual or group follow-up booster. The caregiver-mediated Joint Attention, Symbolic Play, Engagement and Regulation intervention was provided by agency staff to a diverse community sample of families with young children awaiting or diagnosed with autism spectrum disorder. Independent agency staff delivered assessments and recorded a caregiver–child interaction. Blinded raters scored children’s initiations of joint attention, play actions, joint engagement, and caregivers’ strategy implementation. Practitioners implemented the intervention and coaching strategies well ( M = 83%). Overall, caregivers made significant gains in strategy use and children showed significant growth in joint engagement, play diversity, and joint attention across conditions through public caregiver-mediated intervention services. Caregivers’ strategy use supported gains in children’s joint engagement. Lay abstract The next step for communication interventions for young children with autism include coaching/teaching for caregivers that have been tested in university clinics and testing these interventions in real world systems with early intervention providers who serve children and families in their communities. However, there are few projects that have tested how well the intervention can be transferred to community providers and what types of progress children and caregivers make in these services. This project took place in partnership with a community early intervention agency in the province of Ontario, Canada. The agency provided government-funded public health services. The agency was funded to take part in a pilot program to try out one of four early intervention models that included coaching for caregivers and was designed to support children’s social engagement, play, and communication skills. The team decided to test two ways to start the intervention: (a) begin with observation of the practitioner for 4 weeks and then start coached practice with the child and (b) start coaching immediately. The team also tested two ways to support families for 3 months after intervention: (a) group booster sessions and (b) individual visits. The practitioners delivered the intervention well ( M = 83%), and overall, caregivers and children made significant gains by the end of intervention in both observation + coaching and coaching. Attendance for follow-up boosters was variable with fewer families attending groups. More research is needed to test different strategies and roles to individualize interventions for caregivers with a range of goals and learning styles.
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Bender, Jacqueline L., Parminder K. Flora, Shimae Soheilipour, Mihaela Dirlea, Nandini Maharaj, Lisa Parvin, Andrew Matthew, et al. "Web-Based Peer Navigation for Men with Prostate Cancer and Their Family Caregivers: A Pilot Feasibility Study." Current Oncology 29, no. 6 (June 15, 2022): 4285–99. http://dx.doi.org/10.3390/curroncol29060343.
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This study assessed the feasibility, acceptability and potential effects of True North Peer Navigation (PN)—a web-based peer navigation program for men with prostate cancer (PC) and their family caregivers. A one-arm, pre-post pilot feasibility study was conducted at two cancer centres in Canada. Participants were matched through a web-app with a specially trained peer navigator who assessed needs and barriers to care, provided support and encouraged a proactive approach to health for 3 months. Descriptive statistics were calculated, along with paired t-tests. True North PN was feasible, with 57.9% (84/145) recruitment, 84.5% (71/84) pre-questionnaire, 77.5% (55/71) app registration, 92.7% (51/55) match and 66.7% (34/51) post-questionnaire completion rates. Mean satisfaction with Peer Navigators was 8.4/10 (SD 2.15), mean program satisfaction was 6.8/10 (SD 2.9) and mean app usability was 60/100 (SD 14.8). At 3 months, mean ± SE patient/caregiver activation had improved by 11.5 ± 3.4 points (p = 0.002), patient quality of life by 1.1 ± 0.2 points (p < 0.0001), informational support by 0.4 ± 0.17 points (p = 0.03), practical support by 0.5 ± 0.25 points (p = 0.04) and less need for support related to fear of recurrence among patients by 0.4 ± 19 points (p = 0.03). The True North web-based peer navigation program is highly feasible and acceptable among PC patients and caregivers, and the associated improvements in patient and caregiver activation are promising. A randomized controlled trial is warranted to determine effectiveness.
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Deane, Lawrence, Jenna Glass, Inez Vystrcil-Spence, and Javier Mignone. "Live-In Family Enhancement (LIFE): a comprehensive program for healing and family reunification." First Peoples Child & Family Review 13, no. 1 (October 12, 2021): 35–49. http://dx.doi.org/10.7202/1082390ar.
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Family enhancement is an approach to child protection that has been recommended by numerous reviews of child welfare practice. A recent example emerged from a comprehensive review of the child welfare system in Manitoba, Canada. The inquiry recommended that family enhancement be utilised in all child welfare cases, and be funded at levels reasonable enough to allow comprehensive support for families seeking to re-unify. Agency staff told the inquiry, however, that current resources permitted only limited service, for insufficient time, and for only a small percentage of families in care. An Indigenous agency in Manitoba, Metis Child, Family, and Community Services, has devised an innovative approach in which parents were fostered along with their children. This allows the agency to make a wide range of resources available to families on a 24-hour basis for 8-to-12-month periods. The costs do not appear to exceed those of regular fostering of children. This Live-In Family Enhancement (LIFE) program was extensively evaluated in 2015. The findings show a significant set of benefits to families such as stronger attachment between parents and children, improved parenting skills for caregivers, strengthened social support for families, newly acquired household management skills, successful completion of employment training, and significantly improved trust in social workers and the agency. Many of these factors are correlated, in research, with increased rates of family reunification. The paper documents these findings, and recommends that this approach be expanded for use in prevention as well as reunification.
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Béland, François, Howard Bergman, Paule Lebel, A. Mark Clarfield, Pierre Tousignant, André-Pierre Contandriopoulos, and Luc Dallaire. "A System of Integrated Care for Older Persons With Disabilities in Canada: Results From a Randomized Controlled Trial." Journals of Gerontology: Series A 61, no. 4 (April 1, 2006): 367–73. http://dx.doi.org/10.1093/gerona/61.4.367.
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Abstract Background. Care for elderly persons with disabilities is usually characterized by fragmentation, often leading to more intrusive and expensive forms of care such as hospitalization and institutionalization. There has been increasing interest in the ability of integrated models to improve health, satisfaction, and service utilization outcomes. Methods. A program of integrated care for vulnerable community-dwelling elderly persons (SIPA [French acronym for System of Integrated Care for Older Persons]) was compared to usual care with a randomized control trial. SIPA offered community-based care with local agencies responsible for the full range and coordination of community and institutional (acute and long-term) health and social services. Primary outcomes were utilization and public costs of institutional and community care. Secondary outcomes included health status, satisfaction with care, caregiver burden, and out-of-pocket expenses. Results. Accessibility was increased for health and social home care with increased intensification of home health care. There was a 50% reduction in hospital alternate level inpatient stays (“bed blockers”) but no significant differences in utilization and costs of emergency department, hospital acute inpatient, and nursing home stays. For all study participants, average community costs per person were C$3390 higher in the SIPA group but institutional costs were C$3770 lower with, as hypothesized, no difference in total overall costs per person in the two groups. Satisfaction was increased for SIPA caregivers with no increase in caregiver burden or out-of-pocket costs. As expected, there was no difference in health outcomes. Conclusions. Integrated systems appear to be feasible and have the potential to reduce hospital and nursing home utilization without increasing costs.
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Ginn, Carla S., Muhammad Kashif Mughal, Hafsa Syed, Amanda Rae Storteboom, and Karen M. Benzies. "Sustaining Engagement in Longitudinal Research With Vulnerable Families: A Mixed-Methods Study of Attrition." Journal of Family Nursing 23, no. 4 (November 2017): 488–515. http://dx.doi.org/10.1177/1074840717738224.
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The aim of this mixed-methods study was to investigate attrition at the age 10-year follow-up in a study of vulnerable children and their families living with low income following a two-generation preschool program in Calgary, Alberta, Canada. Quantitative factors associated with attrition included: (a) food bank use; (b) unstable housing; (c) child welfare involvement; (d) unpartnered status; and (e) caregiver noncompletion of high school. Qualitative themes related to attrition included: (a) income and employment; (b) health; (c) unstable housing; (d) change of guardianship; (e) domestic violence; (f) work and time management challenges; and (g) negative caregiver–child relationships. Triangulation of quantitative and qualitative results occurred using Maslow’s Hierarchy of Needs; families with unmet physiological, safety, belongingness and love needs, and esteem needs were more likely to attrite. Attrition in longitudinal studies with vulnerable families is complex, affected by frequently changing life circumstances, and struggles to access necessities of life. Strategies for retaining vulnerable families in longitudinal research are offered.
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Archambault, Patrick Michel, Josée Rivard, Pascal Y. Smith, Samir Sinha, Michèle Morin, Annie LeBlanc, Yves Couturier, et al. "Learning Integrated Health System to Mobilize Context-Adapted Knowledge With a Wiki Platform to Improve the Transitions of Frail Seniors From Hospitals and Emergency Departments to the Community (LEARNING WISDOM): Protocol for a Mixed-Methods Implementation Study." JMIR Research Protocols 9, no. 8 (August 5, 2020): e17363. http://dx.doi.org/10.2196/17363.
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Background Elderly patients discharged from hospital experience fragmented care, repeated and lengthy emergency department (ED) visits, relapse into their earlier condition, and rapid cognitive and functional decline. The Acute Care for Elders (ACE) program at Mount Sinai Hospital in Toronto, Canada uses innovative strategies, such as transition coaches, to improve the care transition experiences of frail elderly patients. The ACE program reduced the lengths of hospital stay and readmission for elderly patients, increased patient satisfaction, and saved the health care system over Can $4.2 million (US $2.6 million) in 2014. In 2016, a context-adapted ACE program was implemented at one hospital in the Centre intégré de santé et de services sociaux de Chaudière-Appalaches (CISSS-CA) with a focus on improving transitions between hospitals and the community. The quality improvement project used an intervention strategy based on iterative user-centered design prototyping and a “Wiki-suite” (free web-based database containing evidence-based knowledge tools) to engage multiple stakeholders. Objective The objectives of this study are to (1) implement a context-adapted CISSS-CA ACE program in four hospitals in the CISSS-CA and measure its impact on patient-, caregiver-, clinical-, and hospital-level outcomes; (2) identify underlying mechanisms by which our context-adapted CISSS-CA ACE program improves care transitions for the elderly; and (3) identify underlying mechanisms by which the Wiki-suite contributes to context-adaptation and local uptake of knowledge tools. Methods Objective 1 will involve staggered implementation of the context-adapted CISSS-CA ACE program across the four CISSS-CA sites and interrupted time series to measure the impact on hospital-, patient-, and caregiver-level outcomes. Objectives 2 and 3 will involve a parallel mixed-methods process evaluation study to understand the mechanisms by which our context-adapted CISSS-CA ACE program improves care transitions for the elderly and by which our Wiki-suite contributes to adaptation, implementation, and scaling up of geriatric knowledge tools. Results Data collection started in January 2019. As of January 2020, we enrolled 1635 patients and 529 caregivers from the four participating hospitals. Data collection is projected to be completed in January 2022. Data analysis has not yet begun. Results are expected to be published in 2022. Expected results will be presented to different key internal stakeholders to better support the effort and resources deployed in the transition of seniors. Through key interventions focused on seniors, we are expecting to increase patient satisfaction and quality of care and reduce readmission and ED revisit. Conclusions This study will provide evidence on effective knowledge translation strategies to adapt best practices to the local context in the transition of care for elderly people. The knowledge generated through this project will support future scale-up of the ACE program and our wiki methodology in other settings in Canada. Trial Registration ClinicalTrials.gov NCT04093245; https://clinicaltrials.gov/ct2/show/NCT04093245. International Registered Report Identifier (IRRID) DERR1-10.2196/17363
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Bevilacqua, Micheli U., Helen H. L. Chiu, Sushila Saunders, Linda Turnbull, Paul A. Taylor, Rajinder S. Singh, and Vincent Salyers. "The value of patient and provider reported experiences in evaluating home-based assisted peritoneal dialysis." European Journal for Person Centered Healthcare 5, no. 3 (September 26, 2017): 404. http://dx.doi.org/10.5750/ejpch.v5i3.1349.
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Rationale, aims and objectives: Assisted peritoneal dialysis (PD) is a proven intervention to support patients with functional limitations in performing home-based PD. Previous research has focused on clinical outcomes, but experiences with assisted PD have not been explored from the perspective of patients and providers. Through a 12-month pilot program called PD Assist (PDA), this study elicited these perspectives to improve the program. Methods: A 12-month pilot of PDA delivered by a contracted health service provider delivered across multiple PD units in British Columbia, Canada, was evaluated. A multi-source evaluation model was used, including the semi-structured qualitative feedback in this report. Patients and their families, PD staff and caregiver stakeholders involved in the PDA pilot project, participated in the feedback process. Qualitative feedback was codified and analyzed via a thematic approach to identify values, enablers, barriers and suggestions for PDA program improvement from the perspective of patients andproviders involved in PDA.Results: All stakeholder groups advocated for continuation of PDA services. Key reported values were patient independence, enhanced psychosocial support and relief of treatment-associated burden. Consistency and communication between involved parties were reported as enablers of success, while scheduling conflicts, geographic challenges and staffing inconsistency were viewed as barriers. Areas for program improvement included the need for more personalized services. Conclusions: Semi-structured qualitative feedback provided meaningful insights into the experiences of PDA among patients and providers that were an instrumental part of a successful pilot project and identified opportunities for further program improvement.
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Okpere, Augustina, Susan Samuel, Kathryn King-Shier, Lorraine Hamiwka, and Meghan J. Elliott. "The Diagnostic Journey of Childhood Idiopathic Nephrotic Syndrome: Perspectives of Children and Their Caregivers." Canadian Journal of Kidney Health and Disease 9 (January 2022): 205435812211390. http://dx.doi.org/10.1177/20543581221139025.
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Background: Childhood nephrotic syndrome is a rare kidney disease characterized by sudden onset of edema, massive proteinuria, and hypoalbuminemia. Rare diseases can have a long and difficult trajectory to diagnosis. Objective: We aimed to explore the experiences of children with nephrotic syndrome and their caregivers in their search of a nephrotic syndrome diagnosis. Design: An exploratory, qualitative descriptive study design. Setting: The Alberta Children’s Hospital outpatient nephrology program in Calgary, Alberta, Canada. Sample: Children aged 9 to 18 years with steroid-sensitive nephrotic syndrome and their caregivers. Methods: We undertook semi-structured interviews with children (alone or with a caregiver present) and their caregivers using a question guide suitable to their age and role. We used a thematic analysis approach to inductively code the data and characterize themes related to our research question. Results: Participants included 10 children aged 9 to 18 years (6 boys and 4 girls) and 18 caregivers (8 men and 10 women). We characterized 3 themes related to participants’ experiences in search of a diagnosis of nephrotic syndrome: (1) unexpected and distressing symptom onset, (2) elusiveness of a diagnosis, and (3) encountering a diagnosis. Children with nephrotic syndrome and their caregivers described experiencing initial anxiety due to their unusual and unexpected symptom onset and lack of awareness about the disease. Perceived diagnostic delays and incorrect diagnosis early in the course of the disease contributed to multiple consultations with a variety of care providers. Overall, participants expressed a desire to move past their diagnosis, learn about nephrotic syndrome, and engage in their treatment plans. Limitations: The views expressed by participants may not reflect those of individuals from other settings. The time elapsed since participants’ nephrotic syndrome diagnosis may have influenced their recall of events and reactions to this diagnosis. Conclusions: In characterizing the diagnostic experiences of children and their caregivers, our study provides insight into how patients with nephrotic syndrome and their caregivers can be supported by the healthcare team along this journey. Focused strategies to increase awareness and understanding of nephrotic syndrome among healthcare providers are needed to improve patients’ and families’ diagnostic experiences.
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Aziz, Khalid, Xiaolu Ma, Jocelyn Lockyer, Douglas McMillan, Xiang Y. Ye, Lizhong Du, Shoo K. Lee, and Nalini Singhal. "An evaluation of Acute Care of at-Risk Newborns (ACoRN), a Canadian education program, in Chinese neonatal nurseries." Paediatrics & Child Health 25, no. 6 (April 24, 2019): 351–57. http://dx.doi.org/10.1093/pch/pxz050.
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Abstract Background The Acute Care of at-Risk Newborns (ACoRN) program was developed in Canada to train health care providers in the identification and management of newborns who are at-risk and/or become unwell after birth. The ACoRN process follows a stepwise framework that enables evaluation, decision, and action irrespective of caregiver experience. This study examined the hypothesis that the ACoRN educational program improved clinical practices and outcomes in China. Methods In a before-and-after study, ACoRN training was provided to physicians, neonatal nurses, and administrators in 16 county hospitals in Zhejiang, PRC. Demographic and clinical data were collected on babies admitted to neonatal units before (May 1, 2008 to March 31, 2009) and after (June 1, 2010 to April 30, 2012) training. Results A total of 4,310 babies (1,865 pre- and 2,445 post-training) from 14 sites were included. There were more in-hospital births (97.8% versus 95.6%, P<0.01) in the post-training epoch, fewer babies needing resuscitation (12.7% versus 16.0%, P=0.02), and more babies finishing their care in hospital (67.4% versus 53.1%, P<0.0001). After training, significantly more babies were evaluated as having respiratory distress at admission (14.2% versus 9.4%, P<0.0001); more babies had saturation, glucose and temperature measured on admission and at discharge; and more babies received intravenous fluids (86.3% versus 72.8%, P<0.0001). No significant improvements were noted in mortality (0.49% [post] versus 0.8% [pre], P=0.19 and adjusted odds ratio 0.54, 95% confidence interval: 0.23 to 1.29). Conclusions ACoRN training significantly increased patient evaluations and changed clinical practices. However, we were unable to ascertain improvement in morbidity or mortality.
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Burns, Diane, Vicky Simanovski, Victoria Karuna Hagens, and Garth Matheson. "Reducing the impact of distance on hematopoietic cell therapy patients." Journal of Clinical Oncology 36, no. 30_suppl (October 20, 2018): 74. http://dx.doi.org/10.1200/jco.2018.36.30_suppl.74.
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74 Background: Hematopoietic Cell Therapy (HCT) patients experience unique travel challenges and high out-of-pocket costs due to the highly specialized care required. We conducted a mixed methods study to understand current patient support programs in Ontario and other jurisdictions and a cost analysis to inform the development of recommendations to reduce the impact of remoteness on HCT patients and caregivers. Methods: Qualitative information on patient transportation and accommodation supports was gathered through informal and structured input from fourteen Ontario Regional Cancer Program Directors, Hematologists, Patient and Family Advisory Council and Aboriginal Navigators. An environmental scan of medical travel assistance programs within Ontario and in other jurisdictions was performed. A scoping literature review was conducted of published studies focused on inequities in receipt of cancer care in countries with Universal Health care. HCT patient travel patterns to each of the transplant facilities in Ontario were obtained from analysis of Cancer Care Ontario data holdings. Results: We concluded that travel assistance for cancer patients in Ontario varies considerably across the province, and that Ontario lags behind other jurisdictions in Canada and internationally. The scoping literature review revealed that patients who live far from specialist centres, for some diseases, have later stage at diagnosis, less timely access to specialist care, poorer outcomes, lower patient experience scores, and make treatment decisions based on distance. From the analysis of travel patterns for HCT patients, provincially 4 – 79% of patients travel for HCT based on their location (see table below). Conclusions: This study highlights the need to better support HCT patients in Ontario. As a result, a proposal to support accommodations for HCT patients was developed and approved by the Ontario government for implementation in 2018/19.[Table: see text]
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Salami, Bukola. "Migrant Nurses and Federal Caregiver Programs in Canada." Canadian Journal of Nursing Research 48, no. 2 (June 2016): 35–40. http://dx.doi.org/10.1177/0844562116663951.
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Hales, Brigette M., Sally Bean, Elie Isenberg-Grzeda, Bill Ford, and Debbie Selby. "Improving the Medical Assistance in Dying (MAID) process: A qualitative study of family caregiver perspectives." Palliative and Supportive Care 17, no. 5 (March 19, 2019): 590–95. http://dx.doi.org/10.1017/s147895151900004x.
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AbstractObjectiveThe road to legalization of Medical Assistance in Dying (MAID) across Canada has largely focused on legislative details such as eligibility and establishment of regulatory clinical practice standards. Details on how to implement high-quality, person-centered MAID programs at the institutional level are lacking. This study seeks to understand what improvement opportunities exist in the delivery of the MAID process from the family caregiver perspective.MethodThis multi-methods study design used structured surveys, focus groups, and unstructured e-mail/phone conversations to gather experiential feedback from family caregivers of patients who underwent MAID between July 2016 and June 2017 at a large academic hospital in Toronto, Canada. Data were combined and a qualitative, descriptive approach used to derive themes within family perspectives.ResultImprovement themes identified through the narrative data (48% response rate) were grouped in two categories: operational and experiential aspects of MAID. Operational themes included: process clarity, scheduling challenges and the 10-day period of reflection. Experiential themes included clinician objection/judgment, patient and family privacy, and bereavement resources.Significance of resultsTo our knowledge, this is the first time that family caregivers’ perspectives on the quality of the MAID process have been explored. Although practice standards have been made available to ensure all legislated components of the MAID process are completed, detailed guidance for how to best implement patient and family centered MAID programs at the institutional level remain limited. This study provides guidance for ways in which we can enhance the quality of MAID from the perspective of family caregivers.
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Fox, Danielle E., Robert R. Quinn, Matthew T. James, Lorraine Venturato, and Kathryn M. King-Shier. "Social Support in the Peritoneal Dialysis Experience: A Qualitative Descriptive Study." Canadian Journal of Kidney Health and Disease 7 (January 2020): 205435812094657. http://dx.doi.org/10.1177/2054358120946572.
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Background: People with end-stage kidney disease can either pursue conservative (palliative) management or kidney replacement therapy. Although transplant is preferred, there is a limited number of organs available rendering the majority of patients treated with some form of dialysis. Hemodialysis and peritoneal dialysis are equivalent regarding clinical outcomes, but peritoneal dialysis is much less costly to provide. Peritoneal dialysis is most often done in the home by the patient or a support person and carries a self-care burden on patients and families. Social support is important for patients receiving peritoneal dialysis and in sustaining peritoneal dialysis therapy. Few studies have comprehensively explored social support in the context of peritoneal dialysis. Objective: To explore how patients, family members, and nurses view social support. Design: Qualitative, descriptive study. Setting: An outpatient peritoneal dialysis clinic in Western Canada. Participants: Patients, family members, and nurses. Methods: Patients (n = 15), family members (n = 6), and nurses (n = 11) were interviewed between January and May 2018. Content analysis was undertaken using 4 attributes of social support (ie, emotional support, instrumental support, informational support, and appraisal support) as an analytic framework. Results: Themes related to the 4 attributes of social support were identified: addressing emotional needs and managing emotion (emotional support); peritoneal dialysis tasks and life tasks (instrumental support); accessing information, receiving information, and learning (informational support); and affirmation/external reassurance and self-confidence (appraisal support). The social support needs of both patients and family members varied and were dependent on their existing support networks and individual perspectives of support. Limitations: It is possible that some of the study findings were gender-bound as well as context-specific. The study findings could be different if the patient and caregiver sample were more balanced based on sex. There are also unique attributes of each peritoneal dialysis program that may impact the transferability of these findings to other practice settings. Conclusion: Home-based peritoneal dialysis has potential benefit to patients and health care systems. However, receiving peritoneal dialysis requires support. If health care providers wish to promote this treatment, they must also understand how to best support patients and their family members. Trial Registration: Not applicable.
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Lai, Byron, Drew Davis, Mai Narasaki-Jara, Betsy Hopson, Danielle Powell, Marissa Gowey, Brandon G. Rocque, and James H. Rimmer. "Feasibility of a Commercially Available Virtual Reality System to Achieve Exercise Guidelines in Youth With Spina Bifida: Mixed Methods Case Study." JMIR Serious Games 8, no. 3 (September 3, 2020): e20667. http://dx.doi.org/10.2196/20667.
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Background Access to physical activity among youth with spina bifida (SB) is much lower than it is for children without disability. Enjoyable home-based exercise programs are greatly needed. Objective Our objective is to examine the feasibility of a virtual reality (VR) active video gaming system (ie, bundle of consumer-available equipment) to meet US physical activity guidelines in two youth with SB. Methods Two youth with SB—a 12-year-old female and a 13-year-old male; both full-time wheelchair users—participated in a brief, 4-week exercise program using a popular VR head-mounted display: Oculus Quest (Facebook Technologies). The system included a Polar H10 (Polar Canada) Bluetooth heart rate monitor, a no-cost mobile phone app (VR Health Exercise Tracker [Virtual Reality Institute of Health and Exercise]), and 13 games. The intervention protocol was conducted entirely in the homes of the participants due to the coronavirus disease 2019 (COVID-19) pandemic. The VR system was shipped to participants and they were instructed to do their best to complete 60 minutes of moderate-intensity VR exercise per day. Exercise duration, intensity, and calories expended were objectively monitored and recorded during exercise using the heart rate monitor and a mobile app. Fatigue and depression were measured via self-report questionnaires at pre- and postintervention. Participants underwent a semistructured interview with research staff at postintervention. Results Across the intervention period, the total average minutes of all exercise performed each week for participants 1 and 2 were 281 (SD 93) and 262 (SD 55) minutes, respectively. The total average minutes of moderate-intensity exercise performed per week for participants 1 and 2 were 184 (SD 103) (184/281, 65.4%) and 215 (SD 90) (215/262, 82.1%) minutes, respectively. One participant had a reduction in their depression score, using the Quality of Life in Neurological Disorders (Neuro-QoL) test, from baseline to postintervention, but no other changes were observed for fatigue and depression scores. Participants reported that the amount of exercise they completed was far higher than what was objectively recorded, due to usability issues with the chest-worn heart rate monitor. Participants noted that they were motivated to exercise due to the enjoyment of the games and VR headset as well as support from a caregiver. Conclusions This study demonstrated that two youth with SB who used wheelchairs could use a VR system to independently and safely achieve exercise guidelines at home. Study findings identified a promising protocol for promoting exercise in this population and this warrants further examination in future studies with larger samples.
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Benipal, Pardeep Kaur, Bernice Ho, Tanvir Kaukab, Meb Rashid, Ashna Bowry, Aisha K. Yousafzai, and Ripudaman Singh Minhas. "For the Parent, by the Parent: Creating a Program to Empower Parents of Refugee Background in Canada Using Novel Participatory Approaches." Children 9, no. 12 (November 24, 2022): 1816. http://dx.doi.org/10.3390/children9121816.
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Background: Families of refugee background have complex, multigenerational mental health and developmental needs that are not accounted for in current programming frameworks in Canada. Providing appropriate support services and educational resources that address the unique concerns of families of refugee background will allow for improved family cohesion and developmental outcomes for children. Parenting programs have been shown to be successful in improving parental stress, parental efficacy, and children’s mental health and well-being. This study gathers data about the experiences of caregivers of refugee background in order to develop a novel, multi-dimensional parenting program model using Community-Based Participatory Research (CBPR) principles. Methodology: This was a qualitative, CBPR study using a formative research framework. In-depth interviews (IDIs) were conducted with caregivers of refugee background and service providers that work closely with this population. Data were recorded, transcribed, and coded using deductive and inductive coding methods by two independent coders. Results: A total of 20 IDIs were conducted (7 caregivers and 13 service providers). The main topics that were identified to be incorporated into the program include: features of child development, how to address resettlement issues, child advocacy, and parenting after resettlement. Participants felt that tackling language barriers, addressing the overlapping responsibilities of caregivers attending the sessions, providing incentives, increasing awareness of the program, and using an anti-racist and anti-oppressive approach was key to the program’s success. Participants emphasized the need for trauma-informed mental health supports within the program model. Conclusion: This study describes the key considerations for a novel parenting program for families of refugee background, by engaging them as key stakeholders in the program design process. Future iterations of this project would involve a pilot and evaluation of the program.
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Peckham, Allie, Marianne Saragosa, Madeline King, Monika Roerig, and Gregory Marchildon. "Comparative Analysis of Dementia Care Programs and Delivery Models." Innovation in Aging 5, Supplement_1 (December 1, 2021): 142. http://dx.doi.org/10.1093/geroni/igab046.549.
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Abstract Dementia has significant social and economic impacts for those living with dementia and their caregivers. Despite an increase in prevalence of complex chronic conditions and dementia, long-term care services are continuously pushed out of institutional settings and into the home and community. The majority of people living with dementia in Canada and the United States (U.S.) live at home with support provided by family, friends, or other unpaid caregivers. Ten dementia care programs and service delivery models across five different North American jurisdictions in Canada and the U.S. are compared using a deductive analytical approach using a comparative policy framework developed by Richard Rose. The policy efforts included in this research attempt to improve health system flow and access for vulnerable populations. One common theme among all jurisdictions are long-standing institutional barriers that can make change difficult. These barriers can prevent the ability for systems to be flexible and adapt to meet the changing needs of populations. Incrementalism is often considered an appropriate approach to health system reform. Yet, incremental change efforts lead to policy layers and these layers can lead to tension between different policy mixes and unintended consequences. These programs were introduced in a manner that did not fully consider how to patch current structures and risk creating further system redundancies. One approach to reduce this risk is to combine evaluative efforts that assess ‘goodness of fit’. The degree to which these programs have embedded these efforts successfully is low, with the possible exception of DSRIP from NY.
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Stratton, Lauren, Claire Grant, Monica Moreno, Kerry Lanigan, Katherine Judge, and Sam Fazio. "ACCEPTABILITY AND FEASIBILITY OF A CAREGIVER FINANCIAL PREPAREDNESS PROGRAM." Innovation in Aging 6, Supplement_1 (November 1, 2022): 476. http://dx.doi.org/10.1093/geroni/igac059.1841.
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Abstract Caregivers are often financially impacted, through health care costs, long-term care costs, and decreased income. A financial literacy program, Managing Money: A Caregiver’s Guide to Finances, was developed to provide information on financial impacts in caregiving. The virtual program was delivered synchronously with a live presenter through an online platform and was rated with high acceptability. The virtual program was then shifted to an online format. Changes included removing the live presenter and group format in favor of a voiceover and self-paced movement, the addition of videos, and online resources. The asynchronous, self-paced online delivery of the program was evaluated through a survey of 146 caregivers. Participants had a mean age of 45.85 (SD=5.65); 55% female; 75% White; 46% cared for their grandparent and 45% to their parent. A Likert scale was utilized to indicate satisfaction with the program (1=strongly disagree, 5=strongly agree). Overall, participants indicated that the program provided important information on managing money (M=3.97, SD=.83); helped to understand the content (M=3.89, SD=.91); was easy to read and understand (M=3.99, SD=.90); and would recommend the program (M=3.91, SD=.84). The explanation of content areas were rated on a Likert scale (1=poor, 4=excellent); participants rated areas including having conversations about finances (M=3.05, SD=.80); avoiding financial fraud and abuse (M=2.98, SD=.81); covering care costs (M=2.98, SD=.81); and organizing legal plans (M=3.09, SD=.80). Participants reported no difficulties that needed to be resolved when moving through the program. Overall, both the virtual and online formats were acceptable and feasible to caregiving populations.
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McMillan, H. J., B. Gerber, T. Cowling, W. Khuu, M. Mayer, J. W. Wu, B. Maturi, K. Klein-Panneton, C. Cabalteja, and H. Lochmüller. "Burden of Spinal Muscular Atrophy (SMA) on Patients and Caregivers in Canada." Journal of Neuromuscular Diseases 8, no. 4 (July 30, 2021): 553–68. http://dx.doi.org/10.3233/jnd-200610.
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Background: Spinal muscular atrophy (SMA) is a rare neurodegenerative disease characterized by progressive muscular weakness, which occurs in one in 6,000 to 10,000 live births. The burden of SMA on Canadian patients and caregivers is not known. Objective: To characterize the burden of SMA in Canada as reported by patients and caregivers, including disease and treatment impacts, indirect costs, and caregiver burden. Methods: Surveys were distributed by Cure SMA Canada and Muscular Dystrophy Canada to individuals with SMA and their caregivers. The online surveys were anonymous and completed between January 28 and February 21, 2020. Results: 965 patient and 962 caregiver responses met the eligibility criteria. Patients reported SMA subtypes as: type I (25.0%), type II (41.3%), type III (29.3%). Using the EQ-5D, patients were shown to have impaired quality of life with an average health utility index of 0.49 (SD: 0.26). The median expenditure was $4,500 CAD (IQR: $1,587 – $11,000) for assistive devices; $6,800 CAD (IQR: $3,900–$13,000) on health professional services; and $1,200 CAD (IQR: $600 –$3,100) on SMA-related travel and accommodation in the past 12 months. Caregivers reported needing respite care (45.7%), physiotherapy for an injury from a lift/transfer (45.7%), or other health impacts (63.3%). Caregivers reported changes to personal plans, sleep disturbances, and work adjustments, with a mean Caregiver Strain Index score of 7.5 [SD: 3.3]. Conclusion: SMA in Canada is associated with a significant burden for patients and their caregivers.
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Suntharalingam, Sinthuja, Emily Smith, Janice Cohen, Melanie Buba, and Kathleen Pajer. "14 Head to Toe Practice: Implementation and Outcomes of a Suicide Screener in Pediatric Hospital Inpatient Units." Paediatrics & Child Health 25, Supplement_2 (August 2020): e5-e6. http://dx.doi.org/10.1093/pch/pxaa068.013.
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Abstract Introduction/Background Suicide remains the second leading cause of death in Canadian children and youth (Public Health Agency of Canada, 2019). Recent studies show that 50-80% individuals who die by suicide have had contact with a healthcare provider within one month prior to their death (Ahmedani et. al., 2014; Vasiliadis et. al., 2015). Unfortunately, these patients often present solely with physical complaints and infrequently discuss suicidal thoughts and plans unless asked directly. Those with medical conditions are also at a higher risk of experiencing mental health difficulties. Following a critical incident in our hospital, the corporate leadership committee addressed opportunities for improvement, and recommended the integration of routine suicide screening into standard care for all pediatric patients admitted to hospital. Objectives Prior to implementation of the transformative Head to Toe (term coined by a family caregiver during stakeholder interviews) initiative, suicide screening was routinely part of the admission assessment in the inpatient mental health units and for patients presenting to the emergency department with mental health concerns. In February 2019 we began a step-wise implementation of the Head to Toe suicide screening for all youth 12 and older admitted to the medical and surgical inpatient units at out institution using a psychometrically validated tool, the Ask Suicide Screening Questionnaire (ASQ) (Horowitz et. al, 2012). Design/Methods During the admission process, the nurse administers the ASQ and documents patients’ eligibility for screening and their responses on the ASQ items in the electronic health record. If a patient positively endorses an ASQ item(s) the nurse communicates this to the most responsible physician, who initiates a consult to mental health. Youth who endorse a positive screen receive a brief mental health risk assessment within 24 hours conducted by a mental health nurse. Patients who disclose active suicidal thoughts on the ASQ are assessed directly by psychiatry as soon as possible and actions are taken to ensure patient safety. A framework was developed for continuous evaluation of key components of the Head to Toe practice. Since the end of July 2019, when all medical/surgical units went live with the Head to Toe project, we have monitored compliance with the screening protocol on a daily, weekly, and monthly basis. Results We are the first pediatric hospital in Canada to implement systematic screening for suicide risk in medically or surgically hospitalized children and youth. Initial data indicate that during the first six months of the full implementation of the Head to Toe suicide screening, 72% (396) of eligible patients were screened with 14% (57) of these identified as having thoughts of suicide or a previous attempt and proceeding to further mental health assessment. Daily review of compliance rates on each unit allows us to identify omissions in patient screening and provide one-on-one support to staff to facilitate timely completion of the ASQ, while the weekly and monthly compliance reports are reviewed with unit staff and leadership to identify and address factors impeding compliance with Head to Toe care pathways and monitor change in adherence patterns. This ensures the sustainability of the Head to Toe initiative and provides opportunities for celebrating successes. We are also currently collecting qualitative feedback from youth and families about their experiences participating in the Head to Toe process. Conclusion This presentation will describe the steps to ensure successful implementation of suicide screening in our hospital setting, the challenges encountered and possible solutions. The hope is that this new practice will reduce emergency hospital visits for mental health crises and facilitate early access to mental health services. This initiative can be used to support other hospitals in implementing their own suicide prevention screening programs, along with informing policy about ways to help prevent suicide in youth populations.
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Murnaghan, Sarah, Cynthia Kendell, Jonathan Sussman, Geoffrey A. Porter, Doris Howell, Eva Grunfeld, and Robin Urquhart. "Stakeholder-Identified Interventions to Address Cancer Survivors’ Psychosocial Needs after Completing Treatment." Current Oncology 28, no. 6 (November 25, 2021): 4961–71. http://dx.doi.org/10.3390/curroncol28060416.
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The interventions used in cancer-survivorship care do not always address outcomes important to survivors. This study sought to understand stakeholders’ views on the key concerns of cancer survivors after treatment and the interventions needed to meet survivors’ and families’ psychosocial needs after completing cancer treatment. We conducted a descriptive qualitative study using semi-structured interviews with stakeholders (survivors, family/friend caregivers, oncology providers, primary care providers, and cancer system decision-/policy-makers) from across Canada. For the data analysis, we used techniques commonly employed in descriptive qualitative research, such as coding, grouping, detailing, and comparing the data. There were 44 study participants: 11 survivors, seven family/friend caregivers, 18 health care providers, and eight decision-/policy-makers. Stakeholder-relevant interventions to address survivors’ psychosocial needs were categorized into five groups, as follows: information provision, peer support, navigation, knowledge translation interventions, and caregiver-specific supports. These findings, particularly interventions that deliver timely and relevant information about the post-treatment period and knowledge translation interventions that strive to integrate effective tools and programs into survivorship care, have implications for future research and practice.
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Feingold, Jordyn, Laurie Keefer, Ksenia Gorbenko, Halley Kaye-Kauderer, and Michelle Mendiolaza. "4399 Empowered Transitions: Understanding the Experience of Transitioning to Adult Care Among Adolescents with Inflammatory Bowel Disease and Their Parents Using Photovoice." Journal of Clinical and Translational Science 4, s1 (June 2020): 84. http://dx.doi.org/10.1017/cts.2020.266.
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OBJECTIVES/GOALS: Inflammatory bowel diseases (IBD) are most often diagnosed in adolescence and young adulthood, affecting 10 in 100,000 pediatric patients in the US and Canada. Adolescents with IBD are vulnerable to poorer outcomes and higher health costs, partially attributable to disruptions in the continuity of care in the transition from pediatric to adult care settings. There is currently no consensus among providers about the timing of initiation and completion of the transition process for adolescents and young adults with IBD, and access to structured pediatric transition readiness programs are lacking, with a paucity of research to evaluate relevant clinical outcomes in such existing programs. While prior studies have primarily examined barriers and facilitators of successful transitions from the provider perspective, only few studies have systematically examined such factors from the patient and caregiver perspective. We wish to better understand the experience of living with IBD for adolescents and young adults, as well as their parents, to understand barriers and facilitators of successful transitions in care. Ultimately, we wish to articulate best practices in this domain in order to create and evaluate a transitions program for patients and parents at the Mount Sinai IBD Center. METHODS/STUDY POPULATION: We are recruiting 15-25 patient-parent dyads to complete our study. At recruitment, we collect baseline quantitative metrics from patients pertaining to demographics, disease characteristics, transition-readiness, self-efficacy, resilience, disease-specific health knowledge, and health literacy. From parents, we collect demographic information, concordance metrics (e.g. how parents perceive their children’s resilience, self-efficacy), parenting style questionnaires, and others. These data are used to understand the characteristics of the young adults and parents within our sample to ensure that the results of our study will be generalizable to a diverse range of patients and families. We then train our patient-parent dyads in Photovoice, the primary method of our study. Photovoice is a community based participatory research (CBPR) methodology used in health education and other fields. The method employs photography for participants to capture their experiences living with IBD, or being a parent to a child with IBD. We then interview all participants about the photos using a standard script employed in Photovoice. All surveys are transcribed and coded for thematic analysis. Based on our findings, we hope to determine phenotypes of patient-parent dyads who are likely undergo successful transitions as well as those at higher risk, understand competencies necessary for successful transitions, and create a comprehensive transitions program for the IBD Center that can be applied with all patients undergoing transitions from pediatric to adult GI care. RESULTS/ANTICIPATED RESULTS: We currently have 26 patients and 25 parents (1 pair of siblings) aged 14-25 enrolled in the study. We hypothesize that adolescents with higher baseline resilience, efficacy, disease-specific health knowledge, and less active disease will have more successful transitions than adolescents with lower scores on these metrics. Similarly, we predict that adolescents with lower baseline resilience, self-efficacy, disease-specific health knowledge and more active disease will be ideal candidates for a more robust transition-readiness program. Further, we hypothesize that children of more authoritarian parents will be less prepared for transition than those with assertive parents. We are currently in the process of conducting patient/parent interviews, and have collected 6 interviews thus far. We will begin the qualitative coding process once we have four interviews from each cohort. Themes emerging thus far involve: medication management, psychiatric co-morbidity, social support, direct communication with doctors, the role of surgery, school absences, travel, and others. DISCUSSION/SIGNIFICANCE OF IMPACT: Transition-readiness is defined as a series of skills in the realms of knowledge, information gathering, self-management, and decision-making that must be mastered by a patient in preparation for a healthcare transition, such as that from pediatric to adult IBD care. It has been shown that many clinicians who rely on subjective measures such as perceived health literacy overestimate transition readiness in their IBD patients. Many pediatric gastroenterologists who use more objective measures rely on a validated self-report questionnaire, the Transition Readiness Assessment Questionnaire (TRAQ) to assess readiness for transition and to facilitate discussions around the skills necessary to transition, including appointment keeping, tracking health issues, managing medications, talking with providers, and managing daily activities. However, the TRAQ has been shown to be limited in its ability to predict transition readiness independently of age, and ignores both provider and family perspectives. Given the critical role of parents in medical decision making, and the differential emphasis of the caregiver role in pediatric versus adult IBD care paradigms, it is vitally important to identify barriers to transition as well as differences in perspectives between adolescents living with IBD and their parents. Our study is the first to employ Photovoice, a method that ‘gives a voice to the voiceless’ in the gastroenterology space, in order to understand the needs that adolescents and young adults themselves perceive as critical in promoting transition-readiness. We include parents in this inquiry in order to understand how parental perceptions of their children’s transition-readiness promote or stifle successful transitions and independent disease self-management. We will ultimately use this data to create a Transitions program to evaluate in our center for adolescents with IBD and their parents.
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Tungohan, Ethel, Rupa Banerjee, Wayne Chu, Petronila Cleto, Conely de Leon, Mila Garcia, Philip Kelly, Marco Luciano, Cynthia Palmaria, and Christopher Sorio. "After the Live-In Caregiver Program: Filipina Caregivers’ Experiences of Graduated and Uneven Citizenship." Canadian Ethnic Studies 47, no. 1 (2015): 87–105. http://dx.doi.org/10.1353/ces.2015.0008.
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Shackelford, Melissa, Peggy Frongillo, and Jeanine Certo. "INNV-17. INNOVATIVE EDUCATIONAL APPROACHES TO ENHANCE PATIENT AND CAREGIVER UNDERSTANDING OF TTFIELDS FOR GLIOBLASTOMA." Neuro-Oncology 21, Supplement_6 (November 2019): vi134. http://dx.doi.org/10.1093/neuonc/noz175.560.
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Abstract INTRODUCTION The most common, aggressive malignant brain tumor is Glioblastoma (GBM) with patient median survival of 15–21 months. Patients with GBM face devastation of diagnosis, disease-burden, and hardship of seeking accurate information regarding treatment options. Evolving technology-enhanced methods of learning challenge traditional ways patients with cancer are educated and create an educational paradigm shift. The device manufacturer of Tumor Treating Fields (TTFields)) has developed innovative supplementary educational platforms to compliment healthcare provider (HCP) education of patients-caregivers with GBM treated with TTFields. This report aimed to evaluate these supplementary educational platforms. METHODS Emerging technology methods were employed to address patient-caregiver frequently asked questions, which included queries regarding treatment overview, mechanism of action, treatment initiation, and management to potentially ease the emotional burden of patients-caregivers seeking TTFields information. The TTFields educational platforms included incorporation of Web program, Buddy Program, Open-House Program (live and webinar), Chalk-Talk Video, and Facebook. RESULTS Educational platforms connecting potential and current TTFields patients-caregivers via live/webinar Open-House events ensured patient support. The phone-based Buddy Program allowed for direct 1:1 discussions between potential and current TTFields patients-caregivers. Patient-caregiver surveys revealed 100% would recommend the program to others (n=91); 98% were satisfied with the call experience (n=90); 76% felt the most valuable takeaway was speaking to someone who understands their situation (n=82). Of ambassadors, 98% felt they helped address registrants’ concerns (n=150). A dedicated TTFields Facebook page and first-ever, industry-led Facebook Live event (national broadcast; patients-caregivers discussed unique issues) were launched. Additionally, vignettes (eg, videos, written stories) were shared through a dedicated patient-caregiver website and YouTube channel. CONCLUSIONS In an ever-growing information age, it is important that HCPs become aware of innovative ways to reach and provide education for patients with brain cancer. Emerging technology utilization may improve GBM supportive care, by improving communication channels and potentially easing burden.
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Fabius, Chanee D., and Julie Robison. "Differences in Living Arrangements Among Older Adults Transitioning Into the Community: Examining the Impact of Race and Choice." Journal of Applied Gerontology 38, no. 4 (January 8, 2017): 454–78. http://dx.doi.org/10.1177/0733464816687496.
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The federal Money Follows the Person Rebalancing Demonstration program allows nursing home residents to use Medicaid funds for home and community-based services rather than institutional care. Race, choice in housing, and challenges faced prior to transitioning may impact living arrangements following a discharge into the community. This study examines the influence of these factors on living arrangements for 659 program participants age 65 or older. Unmarried Blacks and people with financial or legal challenges are less likely to live with a live-in caregiver or in supervised housing compared with unmarried Whites. Race did not determine living arrangements among married participants, but housing transition challenges did. Findings inform policies targeting nursing home rebalancing efforts by highlighting racial diversity in living arrangements and emphasizing the need for affordable, accessible housing options for older adults of any race seeking to live in the community rather than remain in an institutional setting.
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Naidoo, Jamie Campbell. "A Rainbow of Creativity: Exploring Drag Queen Storytimes and Gender Creative Programming in Public Libraries." Children and Libraries 16, no. 4 (December 12, 2018): 12. http://dx.doi.org/10.5860/cal.16.4.12.
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Recently, there has been an increase in public libraries initiating targeted and inclusive programming for rainbow families (lesbian, gay, bisexual, trans, or queer [LGBTQ+] caregivers with children or families with LGBTQ+ children). Specialized training programs have been offered to children’s librarians on how to create inclusive services and collections for rainbow families.1 As a result, many libraries in the United States and Canada have designed children’s library programs with LGBTQ+ themes and content, included among these is the drag queen storytime (DQS). A DQS generally includes a drag queen performer reading children’s books and sharing songs much like a traditional storytime program. Many of these programs often focus on creativity in general, as well as gender creativity, or include LGBTQ+ children’s literature as a way to normalize the experiences of rainbow families. Some public libraries market DQS programs for rainbow families while others promote these programs as an example of general inclusive programming for all families. DQS programs can be successful when used with all kinds of families, and many rainbow families appreciate a librarian’s meaningful gestures towards inclusivity.
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Bourgeault, Ivy Lynn, Rishma Parpia, and Jelena Atanackovic. "Canada’s Live-In Caregiver Program: Is it an Answer to the Growing Demand for Elderly Care?" Journal of Population Ageing 3, no. 1-2 (June 2010): 83–102. http://dx.doi.org/10.1007/s12062-010-9032-2.
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Chan, June M., Robert Usher Newton, S. Nicole Culos-Reed, Sarah Faithfull, Sylvie Lambert, Stacey A. Kenfield, Erin Van Blarigan, et al. "An international, population-level initiative to promote healthy lifestyle practices among prostate cancer survivors." Journal of Clinical Oncology 34, no. 3_suppl (January 20, 2016): e287-e287. http://dx.doi.org/10.1200/jco.2016.34.3_suppl.e287.
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e287 Background: Growing evidence suggests that specific lifestyle practices (e.g., diet and exercise) may delay cancer progression among prostate cancer survivors (PCS) and restore post-treatment quality of life. However, there are limited efforts to translate this knowledge to sustainable behavior change among PCS at a population level. Methods: TrueNTH is an international partnership to develop innovative evidence-based interventions and care models to improve the physical and mental wellbeing of PCS. Within TrueNTH, four countries (U.S.A., Australia, Canada, U.K.) are developing solutions to improve lifestyle practices among PCS. Australia is implementing face-to-face and telehealth delivery of exercise and dietary programs facilitated by a web-based portal. Canada is implementing group-based exercise and yoga programs combined with a web-based portal to deliver exercise, nutrition and stress-reduction resources for PCS and caregivers. The U.K. is implementing a healthy living pharmacy approach to deliver tailored diet and exercise advice and support to men. The U.S. will implement a scalable web-based portal that reaches PCS, providers and partners and provides personalized exercise prescriptions and dietary advice, interactive guidance, and behavioral support via social media, tele-exercise, and face-to-face communities. Results: TrueNTH initiatives are in various phases of a three-year project. Australia has enrolled 30 of 80 men across 2 sites and via telehealth, and demonstrated acceptance of the portal. Canada has enrolled 30+ men in exercise programs and will soon add 4 sites and launch their portal. The UK has evaluated assessment protocols in 2 sites and will soon add a 3rd site and implement the pharmacy-based program. The U.S. is building the portal and supportive tools and will begin a trial in Fall 2016. Conclusions: Each TrueNTH program shares common goals to improve lifestyle practices among PCS. Common metrics across initiatives will allow for a global comparison of implementation approaches and assessment of impact at a population level. TrueNTH will utilize this initiative to create a lifestyle survivorship program that improves the lives of PCS worldwide.
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Saad, Ammar, Olivia Magwood, Joseph Benjamen, Rinila Haridas, Syeda Shanza Hashmi, Vincent Girard, Shahab Sayfi, et al. "Health Equity Implications of the COVID-19 Lockdown and Visitation Strategies in Long-Term Care Homes in Ontario: A Mixed Method Study." International Journal of Environmental Research and Public Health 19, no. 7 (April 2, 2022): 4275. http://dx.doi.org/10.3390/ijerph19074275.
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The COVID-19 pandemic has negatively impacted the lives and well-being of long-term care home residents. This mixed-method study examined the health equity implications of the COVID-19 lockdown and visitation strategies in long-term care homes in Ontario. We recruited long-term care home residents, their family members and designated caregivers, as well as healthcare workers from 235 homes in Ontario, Canada. We used online surveys and virtual interviews to assess the priority, feasibility, and acceptability of visitation strategies, and to explore the lived experiences of participants under the lockdown and thereafter. A total of n = 201 participants completed a survey and a purposive sample of n = 15 long-term care home residents and their family members completed an interview. The initial lockdown deteriorated residents’ physical, mental, and cognitive well-being, and disrupted family and community ties. Transitional visitation strategies, such as virtual visits, were criticised for lack of emotional value and limited feasibility. Designated caregiver programs emerged as a prioritised and highly acceptable strategy, one that residents and family members demanded continuous and unconditional access to. Our findings suggest a series of equity implications that highlight a person-centred approach to visitation strategies and promote emotional connection between residents and their loved ones.
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Ducharme, Francine. "Psychoeducational Interventions for Family Caregivers of Seniors across Their Life Trajectory: An Evidence-Based Research Program to Inform Clinical Practice." Advances in Geriatrics 2014 (June 19, 2014): 1–15. http://dx.doi.org/10.1155/2014/316203.
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Family caregivers of the elderly are growing in number and the care they are called upon to deliver in industrialized countries is becoming increasingly demanding and complex. Empirical research shows that the caregiving situation can have a significant impact on the health of these caregivers often on account of stress, physical and psychological exhaustion, and a sense of being overwhelmed. In this context, the quality of life of these caregivers depends in large part on professional educational and support interventions. The purpose of this paper is to present three innovative psychoeducational intervention programs developed and empirically tested by the research team of the Université de Montréal’s (Québec, Canada) Chair in Nursing Care for Seniors and Their Families over the past fifteen years. These interventions have been developed together with family caregivers experiencing different stressful situations across their care trajectory. The results of evaluative studies of these programs provide evidence to inform professional clinical practice. Future directions for caregiving research are discussed.
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Gratao, Aline Cristina Martins, Luana Flávia da Silva Talmelli, Vanderlei José Haas, Sueli Marques, Luciana Kusumota, and Rosalina Aparecida Partezani Rodrigues. "Assessment of caregiver burden with elderly having cognitive deficit." Acta Paulista de Enfermagem 25, no. 6 (2012): 908–13. http://dx.doi.org/10.1590/s0103-21002012000600013.
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To characterize the elderly with cognitive déficit, and family caregivers who live in the urban communit,y and to identify the caregiver burden. METHODS: An observational, cross-sectional study, conducted between January and July 2009. Seventy elderly (aged 65 and older) were assessed for cognitive deficit using the Mini Mental State Examination (MMSE); their 70 caregivers were evaluated by the Zarit Burden Scale (ZBS) and the Self Reporting Questionnaire (SRQ). The data were entered and validated by double entry in the MS Excel Program, and were analyzed using SPSS software, version 15.0. RESULTS: Of the caregivers, 47.1% were children. We obtained a mean for the ZBS of 30.3 (± 17.3) and 6.2 (± 3.2) for the SRQ, p <0.05, correlating lower scores of the MMSE with high scores on ZBS and SRQ. CONCLUSIONS: Cognitive deficit of the elderly was a predictive factor for burden and emotional distress of caregivers. Knowing the reduction of cognitive capacity related to caregiver burden is essential for preserving caregiver health.
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Wu, Chaoran, Aleksandra Zecevic, Maxwell Smith, and Shannon Sibbald. "Preventable? Long-Term Care Policy Successes and Failures During COVID-19 Pandemic: A Scoping Literature Review." Innovation in Aging 5, Supplement_1 (December 1, 2021): 842. http://dx.doi.org/10.1093/geroni/igab046.3081.
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Abstract The number of older adults who live in long-term care (LTC) is expected to increase worldwide. The COVID-19 pandemic has caused serious consequences in Canadian LTC homes, while homes in China and Japan reported minimal infection and death rates in residents. The differences in LTC policies may be one of the contributors. The purpose of this literature review was to identify elements of the LTC policies that might have impacted COVID-19 outcomes in LTC homes in Canada, China, and Japan. A scoping review was conducted following the framework proposed by Arksey and O’Malley. Scholarly articles and grey literature published between January 2015 and June 2020 were identified in six databases, four in English (CINAHL, Scopus, ProQuest, and PubMed), one in Chinese (CNKI), and one in Japanese (CiNii), using MeSH terms for LTC and health policy. Grey literature was identified using Google. Data were extracted, summarized and common themes identified through content analysis. A total of 52 articles and 26 grey sources were included in the review based on determined inclusion criteria. They were research articles, reviews, government or association reports, policy briefs, policy documents, and guides. Four common themes of challenges emerged: caregiver workforce, service provision, funding, and physical environments. Three sub-themes were identified for caregiver workforce and service provision. Differences in COVID-19 consequences in LTC homes in the three countries seem to be related mainly to the challenges with the caregiver workforce and the lack of funding. The result suggests Improvements of LTC policies are required, especially in Canada.
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Stade, B., S. Cheema, W. Watson, J. Bonifacio, D. Campbell, B. Becker, and M. Sgro. "Cost Burden of Raising A Child with Fetal Alcohol Spectrum Disorder." Paediatrics & Child Health 21, Supplement_5 (June 1, 2016): e56a-e56a. http://dx.doi.org/10.1093/pch/21.supp5.e56a.
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Abstract BACKGROUND: In Canada the incidence of Fetal Alcohol Spectrum Disorder (FASD) is estimated to be 1 in 100 live births. FASD is the leading cause of developmental and cognitive disabilities in Canada. No study has examined the cost to parents/caregivers of raising a child with FASD in Canada. OBJECTIVES: To calculate an estimate of direct and indirect costs associated with raising a child with FASD at the patient level. DESIGN/METHODS: Cross-sectional study design was used. Two-hundred and thirty (230) participants completed the study tool. Participants included caregivers of children from day of birth to 18 years of age, living in urban and rural communities throughout Canada. Participants completed the Health Services Utilization Inventory (HSUI). Key cost components were elicited: direct costs: medical, education, social services, out-of-pocket costs; and indirect costs: productivity losses. Total average costs per individual with FASD were calculated by summing the costs in each cost component, and dividing by the sample size. Costs were extrapolated to one year. A stepwise multiple regression analysis was used to identify significant determinants of costs and to calculate the adjusted annual costs of raising a child with FASD. RESULTS: Total adjusted annual costs associated with FASD at the individual level was $31, 640 (95% CI $25,342; $38,642). Severity of the child’s condition, age, and relationship of the individual to the caregiver (biological, adoptive, kinship) were significant determinants of costs (p < 0.001). Thirty-two (32) percent of the total costs were paid by families caring for the children: The total annual cost to parent(s)/caregiver(s) of a child with FASD was $10,124.80. These costs were beyond the costs of raising a healthy child and only associated with costs of FASD. CONCLUSION: Study results demonstrated thecost burden of FASD in Canada to parents/caregivers. Implications to practice, policy, and research are discussed.
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Yeh, Jarmin, Brittney Pond, Matthew Beld, Corinne Eldridge, and Leslie Ross. "THE IHSS+ ADRD TRAINING PROJECT: BOLSTERING THE DEMENTIA CARE WORKFORCE IN CALIFORNIA." Innovation in Aging 6, Supplement_1 (November 1, 2022): 857–58. http://dx.doi.org/10.1093/geroni/igac059.3069.
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Abstract California’s In-Home Supportive Services (IHSS) program provides vital home care to low-income consumers, some of whom live with Alzheimer’s disease or related dementias (ADRD). Yet, most IHSS caregivers receive little or no training in dementia care. With the prevalence of ADRD among Californians age 55+ projected to increase 127% by 2040, reaching over 1.5 million people, the IHSS consumer population living with ADRD will likely increase at a similar rate, exacerbating the need for dementia-trained home care workers. This poster describes preliminary outcomes of the IHSS+ ADRD Training Project, a 10-week, competency-based training program, aiming to reach 600 IHSS caregivers in Alameda County, California, by 2024. All planned in-person activities switched to virtual strategies due to the COVID-19 pandemic. To date, 348 IHSS caregivers have been trained through 16 classes, with 9 classes offered in English, 3 classes in Spanish, and 4 classes in Cantonese. A quasi-experimental, longitudinal design was used to evaluate the project’s impact through pre, post, and 3-month follow-up surveys. Caregiver outcome measures included the: 1) Dementia Knowledge Assessment Tool 2, 2) Fortinsky self-efficacy scale, 3) Caregiver Self-Assessment Questionnaire, and 4) Patient Health Questionnaire-2. Preliminary outcomes trend toward significant increases in caregivers’ knowledge about ADRD and self-efficacy to maximize care they provide to consumers. While caregivers also reported slight increases in stress and depression, they expressed high levels of satisfaction with the training. Future analysis will include comparing IHSS caregiver outcomes to healthcare utilization patterns of IHSS consumers before and after their caregiver’s participation in the training.
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Sass, Rachelle, Juli Finlay, Krista Rossum, Kaytlynn V. Soroka, Michael McCormick, Arlene Desjarlais, Hans Vorster, et al. "Patient, Caregiver, and Provider Perspectives on Challenges and Solutions to Individualization of Care in Hemodialysis: A Qualitative Study." Canadian Journal of Kidney Health and Disease 7 (January 2020): 205435812097071. http://dx.doi.org/10.1177/2054358120970715.
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Background: Clinical settings often make it challenging for patients with kidney failure to receive individualized hemodialysis (HD) care. Individualization refers to care that reflects an individual’s specific circumstances, values, and preferences. Objective: This study aimed to describe patient, caregiver, and health care professional perspectives regarding challenges and solutions to individualization of care in people receiving in-center HD. Design: In this multicentre qualitative study, we conducted focus groups with individuals receiving in-center HD and their caregivers and semi-structured interviews with health care providers from May 2017 to August 2018. Setting: Hemodialysis programs in 5 cities: Calgary, Edmonton, Winnipeg, Ottawa, and Halifax. Participants: Individuals receiving in-center HD for more than 6 months, aged 18 years or older, and able to communicate in English were eligible to participate, as well as their caregivers. Health care providers with HD experience were recruited using a purposive approach and snowball sampling. Methods: Two sequential methods of qualitative data collection were undertaken: (1) focus groups and interviews with HD patients and caregivers, which informed (2) individual interviews with health care providers. A qualitative descriptive methodology guided focus groups and interviews. Data from all focus groups and interviews were analyzed using conventional content analysis. Results: Among 82 patients/caregivers and 31 health care providers, we identified 4 main themes: session set-up, transportation and parking, socioeconomic and emotional well-being, and HD treatment location and scheduling. Particular challenges faced were as follows: (1) session set-up: lack of preferred supplies, machine and HD access set-up, call buttons, bed/chair discomfort, needling options, privacy in the unit, and self-care; (2) transportation and parking: lack of reliable/punctual service, and high costs; (3) socioeconomic and emotional well-being: employment aid, finances, nutrition, lack of support programs, and individualization of treatment goals; and (4) HD treatment location and scheduling: patient displacement from their usual spot, short notice of changes to dialysis time and location, lack of flexibility, and shortages of HD spots. Limitations: Uncertain applicability to non-English speaking individuals, those receiving HD outside large urban centers, and those residing outside of Canada. Conclusions: Participants identified challenges to individualization of in-center HD care, primarily regarding patient comfort and safety during HD sessions, affordable and reliable transportation to and from HD sessions, increased financial burden as a result of changes in functional and employment status with HD, individualization of treatment goals, and flexibility in treatment schedule and self-care. These findings will inform future studies aimed at improving patient-centered HD care.
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Marx, Katherine A., Laura N. Gitlin, and Joseph E. Gaugler. "INTEREST GROUP SESSION—BEHAVIORAL INTERVENTIONS FOR OLDER ADULTS: ADDRESSING CLINICAL SYMPTOMS OF DEMENTIA: PRELIMINARY RESULTS FROM DEMENTIA BEHAVIOR TRIAL." Innovation in Aging 3, Supplement_1 (November 2019): S182. http://dx.doi.org/10.1093/geroni/igz038.648.
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Abstract Currently, just under six million people living in America are diagnosed with Alzheimer’s disease or related dementia. Most people with dementia live in a community setting and are cared for by a family member. Persons living with dementia almost universally experience behavioral and psychological symptoms (BPSD), such as agitation, aggression, and rejection of care as well as functional dependence. These symptoms are related to negative outcomes for both the person living with dementia and the family caregiver. Prior research shows that nonpharmacologic interventions such as meaningful activities, education, and multicomponent interventions have promise in managing behaviors. This symposium focuses on preliminary outcomes from the Dementia Behavior Study (DBS), a Randomized Control study that examined the effect of the Tailored Activity Program (TAP) in a community setting on BPSD and functional dependence in persons living with dementia, and caregiver wellbeing (e.g. depression, burden, perceived change). Gitlin et al will present outcomes of the primary aim (BPSD) and secondary aims (functional dependence and caregiver wellbeing) of the DBS. Pizzi et al explore the cost analysis of the TAP intervention versus the active control group. Scerpella et al describe the alerts and adverse events that were associated with the DBS. Marx et al present the relationship between race and caregiver readiness to participate in TAP. Regier et al explore the BPSD Rejection of Care and the association to caregiver burden. Tailoring interventions, such as activities may improve quality of life for both the person with dementia and the family caregiver.
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Stevens-Carr, Mary, Kevin Sethi, Channing Cochran, Margaret Bencomo-Rivera, and Janice Marceaux. "Brief telephone intervention for caregivers of medically complex patients during COVID-19." Innovation in Aging 4, Supplement_1 (December 1, 2020): 935. http://dx.doi.org/10.1093/geroni/igaa057.3425.
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Abstract The VA Home Based Primary Care (HBPC) program consists of an interdisciplinary team, including psychology, serving veterans with complex medical conditions who are supported by live-in caregiver(s). HBPC psychologists may work with caregivers to address caregiver stress. Some veterans enrolled in HBPC attend Adult Day Care (ADC) programs, allowing respite for caregivers. At the onset of COVID19 pandemic, ADC centers closed to minimize spread of the virus. The authors identified these caregivers to be at high risk for burnout and sought to develop a protocol to assist these caregivers via telephone and evaluate outcomes. PreCOVID-19 caregiver stress was known via a 4-item Zarit Caregiver Burden annual screening (Bédard et al., 2001). Following ADC closures, caregivers of veterans enrolled in ADC programs were contacted and re-administered the Zarit to determine impact of COVID-19 on caregiver stress. Caregivers of veterans not attending ADC were also contacted for comparison. Contacted caregivers were provided a brief CBT-based intervention via telephone, and post-intervention Zarit screening was administered after two weeks. Ultimately, 4 ADC caregivers and 4 non-ADC caregivers were contacted and provided with services before ADC centers reopened. Statistical analysis via mixed model ANOVA did not yield significant results, likely due to small sample size, although there was a large effect size (η_p^2 =.566). ADC caregivers generally reported increased stress from baseline following ADC closure and reduced stress following provision of intervention. The authors will present caregiver feedback about aspects of telephone intervention that were helpful, and not helpful, as well as authors impression.
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Lee, Yun Yun, Stéphanie Caron-Roy, Bobbi Turko, Jane Shearer, Donald Barker, David Campbell, Charlene Elliott, Kim Raine, Sheila Tyminski, and Dana Olstad. "I Can for Kids: Experiences and Perceived Outcomes of a Summer Food Program for Low-Income Households at Risk of Food Insecurity in Calgary, Alberta, Canada." Current Developments in Nutrition 5, Supplement_2 (June 2021): 151. http://dx.doi.org/10.1093/cdn/nzab035_059.
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Abstract Objectives The prevalence of household food insecurity increases in the summer when school meals are no longer accessible, which can negatively impact children's health and wellbeing. Summer food programs, such as I Can for Kids (IC4K) in Calgary, Alberta, Canada, aim to reduce food insecurity in low income households with school-aged children during the summer months. Qualitative studies have not yet examined whether or how grocery gift cards (GGC) can reduce experiences of food insecurity among low-income households. We explored recipients’ and agency staff experiences and perceived outcomes of receiving or distributing GGC from IC4K. Methods This study used qualitative descriptive methodology. Data generation and analysis were guided by Freedman et al's theoretical framework of nutritious food access. Semi-structured interviews were conducted between August and November 2020 with 38 primary caregivers (i.e., GGC recipients) and 17 agency staff who distributed GGC. Directed content analysis was used to analyze the data from each set of interviews using a deductive-inductive approach. Codes were combined into themes that summarized GGC recipients’ and agency staff's experiences and perceived outcomes of receiving or distributing GGC, and feedback to improve program delivery. Results Three themes were generated from the data. The first theme was Financial Relief and reflected increased self-efficacy, improved diet quality, and reduced household stress from receiving GGC. The second theme was Social Connectedness and described enriched family relationships, enhanced rapport between staff and recipients, and increased recipient social capital. The last theme was Program Enhancements and described feedback to improve program delivery by extending program duration, increasing strategic direction to staff on GGC distribution, and additional promotional efforts to increase awareness of GGC availability. Conclusions GGC recipients and agency staff perceived that GGC offered financial relief and enhanced social connections for recipients, and suggested areas for program improvements. Study findings can inform improvements to summer food programs that deliver GGC to reduce food insecurity among low-income households in the summer. Funding Sources Funding provided by the O'Brien Institute for Public Health at the University of Calgary.