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Research Studies

Caregiver Studies

Transition Toolkit for Caregivers of Persons with Dementia

Abstract: The purpose of this project was to develop and test the feasibility of a 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.

Chaos of Caregiving and Hope

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.

Hope and Connection

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".

Hope, Transitions, and Quality of Life of Family Caregivers of Persons with Alzheimer's Disease

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.

Living with Hope: Developing a Psychosocial Supportive Program for Male Spouses of Women with Breast Cancer

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.

A Metasynthesis Study of the Hope Experience of Family Caregivers of Persons with Chronic Illness

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.

Living with Hope: Developing a Psychosocial Supportive Program for Rural Older Women Caregivers of Spouses with Advanced Cancer

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.

Using Ethnodrama to Disseminate Research Findings on the Hope Experience of Primary Caregivers of Persons with Alzheimer's Disease

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.

A Pilot Study of the Living with Hope Program for Caregivers of Persons with Demential Living in Long Term Care

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.

The Experience of Hope in Bereaved Caregivers of Palliative Care Patients

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.

The Hope Experience of Formal Palliative Caregivers

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.

A Pilot Study of a Living with Hope Program for Informal Caregivers of Palliative Home Care Patients

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.

The Experience of Hope for Informal Caregivers of Palliative Patients

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.