Abstract: The Research Team had previously developed an online toolkit (My Tools 4 Care) for family caregivers of older community-living persons with dementia. The Team was approached by caregivers of older persons residing in long term care (LTC) to develop a similar online toolkit to assist them. The purpose of this study was to develop a web-based intervention (MT4C-InCare) for family caregivers of frail older persons living in 24 hour care facilities that would be easy to use, feasible and acceptable. MT4C-in Care was found to be easy to use, feasible and acceptable and helped caregivers to deal with the significant changes they experience when a family member resides in LTC. MT4C-InCare was developed in consultation with the Alzheimer Society and tested over a 2 month period. The intervention is available at My Tools 4 Care-InCare or on the ASANT Cafe website.
Abstract: The number of Canadians with Alzheimer's Disease and related dementias (ADRD) is growing and supporting family caregivers of persons with ADRD is critical. These caregivers experience significant, complex and distressing transitions such as changes to their environment, roles and relationships, physical and mental health problems and isolation. The purpose of this study was to implement and evaluate a web-based transition intervention (My Tools 4 Care) to increase the caregivers' self-efficacy, hope and health-related quality of life. Findings from this study suggest My Tools 4 Care increases caregiver hope, encourages self-reflection and the importance of self-care; provides information and education; and provides validation and confirmation for the caregiver. The intervention is available at My Tools 4 Care or on the ASANT Cafe website.
Abstract: Male partners of women with breast cancer experience multiple complex significant transitions resulting in decreased quality of life. The purpose of this 3 year study was to develop and pilot test a web-based toolkit tailored to male spouses of women with breast cancer. An expert panel helped develop a self-administered flexible web-based intervention entitled Male Spouse Transition Toolkit (MaTT). MaTT was then evaluated by 31 male spouses. The participants reported that the MaTT was easy to use, it helped them deal with significant changes they were experiencing and they would recommend it to others. The intervention is available at Male Spouse Transition Toolkit.
Abstract: The number of older persons with multiple chronic conditions (MCC) in Canada is growing due to an aging population and increased longevity. Family caregivers play an important role in supporting older adults with MCC yet they are themselves at risk as they often prioritize the needs of the care recipient while neglecting their own needs. This results in reduced emotional, mental, social financial and physical health and well-being of the caregiver. As part of a larger CIHR funded study, this project evaluated data collected from family caregivers at two time points (6 months apart) in two different provincial jurisdictions (Ontario and Alberta) to caputure the dynamic nature of the caregiving for older persons with MCC. Gender had a significant impact on changes in quality of life for these caregivers.
Abstract: The purpose of this project was to develop and test the feasibility of a paper-based Transition Toolkit to support caregivers of persons with Alzheimer Disease (AD). First a theoretical understanding of the likely processes of change was developed by reviewing existing evidence and theory and conducting new primary research. Then an intervention was developed with the Alzheimer Society experts. The next step was to create a concept map of the critical inputs of the intervention by using the theoretical understanding. Finally, a feasibility study using a mixed methods design was conducted with 20 caregivers of persons living with AD. The pilot study demonstrated that the Transition Toolkit is acceptable, easy to use, and has the potential to assist with transitions.
Abstract: The purpose of this metasynthesis study was to explore family caregivers' significant transitions in order to identify specific policies and interventions appropriate to support caregivers of persons at the end of life. Metasynthesis is a method that brings together qualitative studies to enhance their contribution to a more formalized knowledge. The findings from 72 studies were combined. Caregivers lives are permanently changed by life-altering transitions. When they have help with these transitions they experience hope, confidence in their ability to deal with difficult situations, find meaning and are able to prepare to the death of their family member
Abstract: This study was undertaken to better understand hope experience and challenges of family caregivers. One hundred and one (101) journal entries of family caregivers of people living with advanced cancer were condensed into poetic phrases to produce a poetic narrative. Examining narrative through poetic presentation provided more nuanced understanding of family caregiver experiences with sense of chaos and hope. Reminiscing, journaling and sharing experiences with others may help foster the hope of family caregivers.
Abstract: While research has identified a strong relationship between hope and well-being for family caregivers living in the community, those living in long-term care facilities (LTC) have not been studied. The purpose of this study was to examine hope experience of family caregivers of persons diagnosed with dementia living in LTC. Family was broadly defined to include relatives and friends. Twenty-three face-to-face interviews were conducted with 13 caregivers of residents with dementia living in LTC. Seven participants kept diaries regarding their hope over two weeks. The study found that hope was essential for family caregivers of persons with dementia residing in an LTC. The importance of maintaining relationships among family and the person living in the LTC was underscored by the theme of "hope and connection".
Abstract: The purpose of this study was to examine factors associated with the quality of life of family caregivers of persons with Alzheimer's Disease (AD). Those factors included demographic variables, their transitions experience, and hope. A secondary aim was to explore the types of transitions experienced by these caregivers and how they dealt with the transitions. Eighty caregivers completed a survey with quantitative measures and a qualitative survey about their transitions experience. It was found that subjects with higher hope scores and who dealt with their transitions by actively seeking out knowledge and assistance had higher overall quality of life scores.
Abstract: The purpose of this study was to develop and pilot test a living with hope program to foster hope and increase quality of life for male spouses of women with recurrent breast cancer and pilot test the resultant Living with Hope Program (LWHP-FBC). In phase 1, qualitative interviews with 11 male spouses were conducted to describe their hope. In phase 2, a film based on the findings from phase 1 was produced. In phase 3, a pilot study of the Living with Hope Program for male spouses was conducted. The program consisted of viewing the film and completing a hope exercise called "Stories of the Present" where subjects write in a journal for approximately 5 minutes at the end of each day for 2 weeks while reflecting on their hope. The participants described their experience following the diagnosis of their wives with breast cancer as characterized by distress, hopelessness, and loss of control. Hope, however, was tangible and important to them. Many of the participants found the film (Engaging Hope) helpful as it made them think about hope in different ways and gave them practical suggestions. The journaling component contirbuted to participant reflections on hope, but they did not enjoy journaling and on average spent only four minutes per entry, and completed only two journal entries per week.
Abstract: The purpose of this study is to combine the findings of several studies of hope of family caregivers of persons with chronic illness. The findings from 14 studies were combined to develop a new idea of hope. Hope was found to be the possibility of a positive future. It was described as being very important to the caregivers to give them courage to keep caregiving. Several types of hope were identified; some were very specific and were focused on the moment. As the present situation became more difficult, different ways to find hope were described.
Abstract: Hope is defined by caregivers as the inner strength to achieve future good and to continue care giving. Pilot test findings of a Living with Hope Program (LWHP) suggested it is an acceptable and feasible intervention for use by family caregivers. Although it shows promise in potentially increasing hope and quality of life, further testing and development is needed. Questions remain as to: a) what are the mechanisms through which the LWHP affects outcomes and b) how long it is effective? The overall purpose of this time series mixed method study is the further development and testing of the LWHP by:
a) Determining the mechanisms of the LWHP by testing a LWHP conceptual model in which self-efficacy, and loss/grief are hypothesized intermediary variables for changes in hope, and subsequently quality of life among rural women caring for persons with advanced cancer, and;
b) Exploring the longitudinal effects of the LWHP on hope, quality of life and health services utilization among rural women caring for persons with advanced cancer.
Abstract: Ethnodrama is an innovative knowledge translation approach as research findings are presented by way of performances. The purpose of this study was to use ethno-drama to present research findings on the hope experience of primary caregivers of persons with Alzheimer's Disease. Primary caregivers of persons with Alzheimer's Disease participated in 5 workshops and 2 performances. Individual follow up interviews and audience surveys suggested that the ethnodrama was effective in increasing hope in primary caregivers of persons with Alzheimer's Disease.
Abstract: The purpose of this study was to explore the experience of hope for family members caring for a person with dementia. Seventeen family members actively caring for persons with dementia in the Sunrise Health Region were asked questions about their hope. Participants described their hope to be able to continue care giving and for "good days" for their family member with dementia. Grief and loss hindered their hope. The participants described continually renewing their everyday hope by "coming to terms," finding positives, and being aware of possibilities.
Abstract: The purpose of this study was to explore the experience, meaning, and processes of hope for a caregiver during bereavement, within the first year after the death of their spouse from cancer. Women, ages 60 years and older, who provided care for their spouse, were interviewed and asked to keep a short diary of hope over a 1 to 2 week period. A grounded theory was developed from the interview and diary data that helps to explain these women's concerns relating to hope, and how they manage to stay hopeful in a difficult situation. Data collection began in October 2007 and was completed in August 2008.
Abstract: The purpose of the study was to describe the experience of hope of formal palliative caregivers (doctors, nurses, social workers, etc). Those who were attending the Saskatchewan Hospice and Palliative Care Association meetings on May 12, 2004 were asked to complete a questionnaire about their hope. One hundred and thirteen participants completed the questionnaires.
Abstract: The overall purpose of this pilot study was to develop a living with hope program for family caregivers that will increase hope. There were three phases to this study. The first phase involved interviewing 10 caregivers about their hope and what helps or hinders it. The second phase was to develop the program based on what the caregivers said. Then the third phase was to pilot test the program with 10 family caregivers. The caregivers were asked to evaluate the living with hope program and make suggestions for changes.
Abstract: The purpose of this study was to explore the experience of hope for family caregivers of palliative patients. Ten caregivers who were living with and currently providing care to a palliative patient at home were interviewed. They described how their hope was like a wave, going up and down. They found they could hang on to their hope by: a) doing what you have to do, b) living in the moment, c) staying positive, and d) writing your own story. The support of friends, family, and health care professionals and connecting with something bigger and stronger helped them hang on to hope.