Browsing by Author "Duggleby, Wendy"

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    A mixed-method evaluation of a volunteer navigation intervention for older persons living with chronic illness (Nav-CARE): findings from a knowledge translation study
    (2020-10-15) Pesut, Barbara; Duggleby, Wendy; Warner, Grace; Bruce, Paxton; Ghosh, Sunita; Holroyd-Leduc, Jayna; Nekolaichuk, Cheryl; Parmar, Jasneet
    Abstract Background Volunteer navigation is an innovative way to help older persons get connected to resources in their community that they may not know about or have difficulty accessing. Nav-CARE is an intervention in which volunteers, who are trained in navigation, provide services for older persons living at home with chronic illness to improve their quality of life. The goal of this study was to evaluate the impact of Nav-CARE on volunteers, older persons, and family participating across eight Canadian sites. Methods Nav-CARE was implemented using a knowledge translation approach in eight sites using a 12- or 18-month intervention period. A mixed method evaluation was used to understand the outcomes upon older person engagement; volunteer self-efficacy; and older person, family, and volunteer quality of life and satisfaction with the intervention. Results Older persons and family were highly satisfied with the intervention, citing benefits of social connection and support, help with negotiating the social aspects of healthcare, access to cost-effective resources, and family respite. They were less satisfied with the practical help available for transportation and errands. Older persons self-reported knowledge of the services available to them and confidence in making decisions about their healthcare showed statistically significant improvements (P < .05) over 12–18 months. Volunteers reported satisfaction with their role, particularly as it related to building relationships over time, and good self-efficacy. Volunteer attrition was a result of not recruiting older persons in a timely manner. There was no statistically significant improvement in quality of life for older persons, family or volunteers from baseline to study completion. Conclusions Findings from this study support a developing body of evidence showing the contributions volunteers make to enhanced older person and family well-being in the context of chronic illness. Statistically significant improvements were documented in aspects of client engagement. However, there were no statistically significant improvements in quality of life scores even though qualitative data illustrated very specific positive outcomes of the intervention. Similar findings in other volunteer-led intervention studies raise the question of whether there is a need for targeted volunteer-sensitive outcome measures.
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    ItemOpen Access
    Building a new life: a qualitative study of how family carers deal with significant changes
    (2022-07-01) Duggleby, Wendy; O’Rourke, Hannah M.; Baxter, Pamela; Nekolaichuk, Cheryl; Thompson, Genevieve; Peacock, Shelley; Ghosh, Sunita; Holroyd-Leduc, Jayna; McAiney, Carrie; Dubé, Véronique; Swindle, Jennifer; Pagnucco-Renaud, Madeleine; Sana, Samina
    Abstract Background Family carers of persons living with dementia who are residing in long term care (LTC), often experience significant changes in their roles and relationships which affects mental and physical health. Research has focused on describing the carers’ experience, but not on how they deal with these changes or their perceptions of support needs. The purpose of this study was to explore how family carers of persons living with dementia residing in LTC deal with significant changes and to understand how best to support these carers. Methods Eight face-to-face audio-recorded focus group interviews were conducted with 45 participants from September 2019 to January 2020, as part of a larger study aimed at guiding the adaptation of an online toolkit to support family carers of persons living with dementia residing in LTC. Applied thematic analysis was used to analyze the focus group data. Findings/results Carers dealt with the significant changes they experienced through the process of “building a new life” consisting of two sub-processes: a) building new relationships (with their family member, LTC staff and others outside of LTC), and b) finding space for themselves (sharing of care and finding balance). Understanding dementia, support from others (staff, family and friends), connecting with resources, and being included in care decisions helped carers build a new life. Conclusion The process of building a new life describes the ways that family carers deal with the life-altering changes they experienced when a family member is admitted to LTC. Carers may be supported in building their new life, by providing them with information about dementia and how to relate to staff and their family member living with dementia. The quality of care being provided and the LTC environment may also play an important role in how carers deal with the significant changes they experience.
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    How do people with disabilities perceive advance care planning?
    (2017) Gray, Robin; Crocker, Cheryl; Simon, Jessica; Guichon, Juliet; Duggleby, Wendy; Atkins, Chloe
    Advance care planning is the process of reflection and communication of one's preferences for future care. Technological and medical advances have made it possible for people to live longer. It is likely that many people will live with a disability. This study aimed to understand how people with physical and/or sensory disabilities perceive advance care planning. One-to-one interviews were conducted with eleven adults aged 40 - 74 years, who self-identified as having a physical and/or sensory disability. The study was designed, interviews were conducted, and data were analyzed using Charmaz’ grounded theory. Participants' two main concerns emerged: health care provider lack of awareness of disability and aging with disability. Participants adopted planning for present and future health or illness as the means to address barriers in health encounters. A theoretical approach grounded in Self-Determination Theory, Self-management, and the Collaborative Care in Chronic Illness Model was derived.
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    Mixed-methods single-arm repeated measures study evaluating the feasibility of a web-based intervention to support family carers of persons with dementia in long-term care facilities
    (2018-10-31) Duggleby, Wendy; Jovel Ruiz, Kathya; Ploeg, Jenny; McAiney, Carrie; Peacock, Shelley; Nekolaichuk, Cheryl; Holroyd-Leduc, Jayna; Ghosh, Sunita; Brazil, Kevin; Swindle, Jennifer; Forbes, Dorothy; Woodhead Lyons, Sandra; Parmar, Jasneet; Kaasalainen, Sharon; Cottrell, Laura; Paragg, Jillian
    Abstract Background Following institutionalization of a relative with Alzheimer disease and related dementias (ADRD), family carers continue to provide care. They must learn to negotiate with staff and navigate the system all of which can affect their mental health. A web-based intervention, My Tools 4 Care-In Care (MT4C-In Care) was developed by the research team to aid carers through the transitions experienced when their relative/friend with ADRD resides in a long-term care (LTC) facility. The purpose of this study was to evaluate MT4C-In Care for feasibility, acceptability, ease of use, and satisfaction, along with its potential to help decrease carer’s feelings of grief and improve their hope, general self-efficacy, and health-related quality of life. Methods The study was a mixed-methods single-arm repeated measures feasibility study. Participants accessed MT4C-In Care over a 2-month period. Data were collected at baseline and 1 and 2 months. Using a checklist, participants evaluated MT4C-In Care for ease of use, feasibility, acceptability, and satisfaction. Measures were also used to assess the effectiveness of the MT4C-In Care in improving hope (Herth Hope Index), general self-efficacy (GSES), loss and grief (NDRGEI), and health-related quality of life (SF12v2) of participants. Qualitative data were collected at 2 months and informed quantitative findings. Results The majority of the 37 participants were female (65%; 24/37), married (73%; 27/37), and had a mean age of 63.24 years (SD = 11.68). Participants reported that MT4C-In Care was easy to use, feasible, and acceptable. Repeated measures ANOVA identified a statistically significant increase over time in participants hope scores (p = 0.03) and a significant decrease in grief (< 0.001). Although significant differences in mental health were not detected, hope (r = 0.43, p = 0.03) and grief (r = − 0.66, p < 0.001) were significantly related to mental health quality of life. Conclusion MT4C-In Care is feasible, acceptable, and easy to use and shows promise to help carers of family members with ADRD residing in LTC increase their hope and decrease their grief. This study provides the foundation for a future pragmatic trial to determine the efficacy of MT4C-In Care. Trial registration ClinicalTrials.gov NCT03571165. June 30, 2018 (retrospectively registered).
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    Optimizing the integration of family caregivers in the delivery of person-centered care: evaluation of an educational program for the healthcare workforce
    (2022-03-18) Parmar, Jasneet K.; L’Heureux, Tanya; Anderson, Sharon; Duggleby, Wendy; Pollard, Cheryl; Poole, Lisa; Charles, Lesley; Sonnenberg, Lyn K.; Leslie, Myles; McGhan, Gwen; Huhn, Arlene; Sereda, Sandy; Marion, Cecilia; Tarnowski, Glenda; Mah, Jennifer; Melenberg, Denise; Weir, Carolyn; Pooler, Charlotte; MacLachlan, Nora; Bremault-Phillips, Suzette; Tian, Peter G. J.; Sacrey, Lori-Ann R.
    Abstract Background While family caregivers provide 70-90% of care for people living in the community and assist with 10-30% of the care in congregate living, most healthcare providers do not meaningfully involve family caregivers as partners in care. Recent research recommends that the healthcare workforce receive competency-based education to identify, assess, support, and partner with family caregivers across the care trajectory. Objective This paper reports a mixed-methods evaluation of a person-centered competency-based education program on Caregiver-Centered Care for the healthcare workforce. Methods This foundational education was designed for all healthcare providers and trainees who work with family caregivers and is offered free online (caregivercare.ca). Healthcare providers from five healthcare settings (primary, acute, home, supportive living, long-term care) and trainees in medicine, nursing, and allied health were recruited via email and social media. We used the Kirkpatrick-Barr health workforce training evaluation framework to evaluate the education program, measuring various healthcare providers’ learner satisfaction with the content (Level 1), pre-post changes in knowledge and confidence when working with family caregivers (Level 2), and changes in behaviors in practice (Level 3). Results Participants were primarily healthcare employees (68.9%) and trainees (21.7%) and represented 5 healthcare settings. Evaluation of the first 161 learners completing the program indicated that on a 5-point Likert scale, the majority were satisfied with the overall quality of the education (Mean(M) = 4.69; SD = .60). Paired T-tests indicated that out of a score of 50, post-education changes in knowledge and confidence to work with family caregivers was significantly higher than pre-education scores (pre M = 38.90, SD = 6.90; post M = 46.60, SD = 4.10; t(150) = − 16.75, p < .0001). Qualitative results derived from open responses echoed the quantitative findings in satisfaction with the education delivery as well as improvements in learners’ knowledge and confidence. Conclusion Health workforce education to provide person-centered care to all family caregivers is an innovative approach to addressing the current inconsistent system of supports for family caregivers. The education program evaluated here was effective at increasing self-reported knowledge and confidence to work with family caregivers.
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    Study protocol: pragmatic randomized control trial of my tools 4 care- in care (MT4C-in care) a web-based tool for family Carers of persons with dementia residing in long term care
    (2020-08-10) Duggleby, Wendy; O’Rourke, Hannah; Swindle, Jennifer; Peacock, Shelley; McAiney, Carrie; Baxter, Pamela; Thompson, Genevieve; Dubé, Véronique; Nekolaichuk, Cheryl; Ghosh, Sunita; Holroyd-Leduc, Jayna
    Abstract Background When a family member resides in long term care facility (LTC), family carers continue caregiving and have been found to have decreases in mental health. The aim of My Tools 4 Care – In Care (an online intervention) is to support carers of persons living with dementia residing in LTC through transitions and increase their self-efficacy, hope, social support and mental health. This article comprises the protocol for a study to evaluate My Tools 4 Care-In Care (MT4C-In Care) by asking the following research questions: 1) Is there a 2 month (immediately post-intervention) and 4 month (2 months post-intervention) increase in mental health, general self-efficacy, social support and hope, and decrease in grief and loneliness, in carers of a person living with dementia residing in LTC using MT4C-In CARE compared to an educational control group? 2) Do carers of persons living with dementia residing in LTC perceive My Tools 4 Care- In Care helps them with the transitions they experience? Methods This study is a single blinded pragmatic mixed methods randomized controlled trial. Approximately 280 family carers of older persons (65 years of age and older) with dementia residing in LTC will be recruited for this study. Data will be collected at three time points: baseline, 2 month, and 4 months. Based on the feasibility study, we hypothesize that participants using MT4C-In Care will report significant increases in hope, general self-efficacy, social support and mental health quality of life, and significant decreases in grief and loneliness from baseline, as compared to an educational control group. To determine differences between groups and over time, generalized estimating equations analysis will be used. Qualitative descriptive analysis will be used to further evaluate MT4C-In Care and if it supports carers through transitions. Discussion Data collection will begin in four Canadian provinces (Alberta, Manitoba, Ontario and Saskatchewan) in February 2020 and is expected to be completed in June 2021. The results will inform policy and practice as MT4C-In Care can be revised for local contexts and posted on websites such as those hosted by the Alzheimer Society of Canada. Trial registration NCT04226872 ClinicalTrials.gov Registered 09 January 2020 Protocol Version #2 Feb 19, 2020.
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    Temporizing Uncertainty: A Constructivist Grounded Theory of Advanced Practice Palliative Care Nurses' Prognostication in Non-Malignant Illnesses
    (2019-07-09) Ferguson, Angela L.; Raffin Bouchal, D. Shelley; Simon, Jessica; Sinclair, Shane; Venturato, Lorraine; Duggleby, Wendy
    Palliative care nursing practices combine the science and art of nursing in unique ways. Prognostication is a valued core skill that requires knowledge, intuition, curiosity, conceptualization, and decision-making. The praxis of prognostication is complicated and foundational to the culture and work of advanced practice PCN. This researcher, a member of the group of study provides a unique glimpse into this culture of PCN. The study sought to understand and discover a theory about the experiences of prognostication of individuals with non-malignant illnesses by eleven PCN in a palliative care program, across care sectors. Ten of the eleven nurses were advanced practice nurses in consultant roles and one in a front-line home care position. All eleven nurses held positions that included the regular work of prognostication in fulfillment of their nurse-patient role, especially related to care transitioning. The experiences of these nurses were captured through observation of a nurse-patient prognostic consult followed by participant interviews. The data consisted of one-to-one interviews with each PCN which were then transcribed verbatim. Data analysis began following transcription with line-by-line coding. Analysis was strengthened by the constant comparison method and use of field notes and memoing. The analysis sought descriptions, patterns and relationships from the PCN for shared meaning around prognostication in non-malignant illnesses. There were three main categories that were identified which formulated the theoretical model of the factors and process of prognostication by advanced practice PCN. The core category of ‘Temporizing Uncertainty’ suggests that at the centre of the experiences of the complex process and decision-making in prognostication, PCN are subjected to conflicting and challenging cognitive and affective psychological factors that influence the conative work of prognostication. These findings offer insight into PCN practices and carry implications for education and future research in palliative care. The future aim is to enhance advocacy for end-of-life transitions for patients and their families faced with chronic illnesses and in supporting clinical decision-making.