Older Adults With Inflammatory Bowel Disease in Canada: A Mixed-Methods Exploratory Study of Care Experiences and Health-Related Quality of Life.

Literature exploring the health-related quality of life and care experiences of older adults with inflammatory bowel disease is limited despite the increasing prevalence in this population. The purpose of this study was to explore the perceived health-related quality of life and care experiences in older adults with inflammatory bowel disease in Canada. This study used a mixed-methods convergent design consisting of a descriptive, cross-sectional survey and qualitative descriptive interviews. Fifty-eight participants completed the survey and 24 participants completed interviews. Older adults reported satisfaction with inflammatory bowel disease-related care, high levels of disease control, moderate health-related quality of life, and low levels of patient-healthcare team interactions. Themes identified were (1) Experiences of inflammatory bowel disease in daily life; (2) Accessibility of inflammatory bowel disease-related health services; and (3) Communication and relationships to facilitate inflammatory bowel disease care. Ultimately, quality inflammatory bowel disease care for older adults is contingent upon communication between patients and providers, access to multidisciplinary clinics, and support networks. By ensuring these factors are present, providers and patients can work together collectively toward positive patient outcomes, enhanced satisfaction with care, and greater perceived quality of care.

Critically Ill Patients: Family Experiences of Interfacility Transfers From Rural to Urban Centers and Impact on Family Relationships.

A critical illness event is intensely stressful for family members and can lead to negative psychological, emotional, social and financial consequences. In geographically rural areas, critically ill patients may require an interfacility transfer to an urban centre for advanced critical care services. In this context, research suggests that these family members from rural areas experience additional burdens, yet little is known about these experiences. An interpretive phenomenological approach was used to explore lived experiences of family members from rural areas whose critically ill relative undergoes an interfacility transfer to an urban centre for advanced critical care services. Participants described feelings of vulnerability in the urban centre, the need to protect the critically ill patient and other relatives, maintaining responsibilities at home, navigating family relationships, and a loss of connection during the transfer window. These findings may better position nurses to address family members' stress and anxiety during this experience.

Building a new life: a qualitative study of how family carers deal with significant changes.

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.

Exploring nursing presence as experienced by parents in pediatric oncology.

BACKGROUND: Nursing presence has been viewed as a valuable way to create therapeutic relationships and has been linked to better health outcomes for patients and families. However, whether nursing presence can be described and how parents in pediatric oncology experience this phenomenon remains unanswered. Therefore, the purpose of this study was to explore how parents of children with cancer describe and experience nursing presence. METHODS: This study used Giorgi's phenomenological approach to explore nursing presence as experienced by parents of children with cancer. Ten participants from a pediatric oncology clinic in Canada were interviewed. Giorgi's approach was used to analyze these data. FINDINGS: Based upon participants' descriptions, a structure of nursing presence emerged which included six constituent features: An attitude of presence, a source of encouragement, clinical experience and expertise, therapeutic communication, family involvement, and a sense of home away from home. Most notably, nursing presence as experienced by parents was characterized by the 'being' and 'doing' of presence which were equally important. CONCLUSION: The experiences described by parents provided rich and nuanced insights into what it meant to experience nursing presence in a pediatric oncology setting. This study provides a structure for this meaning making and expounds on its constituent features, describing what nursing presence resembles when experienced by parents of children with cancer. PRACTICE IMPLICATIONS: This study informs nursing practice, policy, and education in ways that are likely to enhance care and the subsequent well-being of pediatric oncology patients and families.

Overcoming Barriers for Older Adults to Maintain Virtual Community and Social Connections during the COVID-19 Pandemic.

OBJECTIVES: We describe the evaluation of remote training, an innovative use of technology to maintain older adults' virtual connection with their community and socialization, which were disrupted by the pandemic. Remote training was conducted via telephone using principles of cognitive rehabilitation and delivered by trained clinicians. METHODS: We thematically analyzed trainer reflection notes and interviews with older adult participants. RESULTS: The main facilitators were technology training with exposure, and the main barrier was fear of technology. CONCLUSIONS: We describe how telephone-based training grounded in principles of cognitive rehabilitation can be used to remotely train older adults to use new technology and to help them maintain their community-based connections and engage in socialization. CLINICAL IMPLICATIONS: Fear of technology during the pandemic can cause significant impairment in social functioning for older adults, at least when the only method for socialization is technology mediated such as during the COVID-19 pandemic. Empathically delivered remote training in an understanding manner can reduce fear and increase social and community connections in the era of physical distancing.

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.

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.

Qualitative Research and Its Importance in Adapting Interventions.

Systematic approaches are essential when adapting interventions, so the adapted intervention is feasible, acceptable, and holds promise for positive outcomes in the new target population and/or setting. Qualitative research is critical to this process. The purpose of this article is to provide an example of how qualitative research was used to guide the adaptation a web-based intervention for family carers of persons with dementia residing in long-term care (LTC) and to discuss challenges associated with using qualitative methodologies in this regard. Four steps are outlined: (a) choosing an intervention to adapt, (b) validating the conceptual framework of the intervention, (c) revising the intervention, and (d) conducting a feasibility study. Challenges with respect to decontextualization and subjective reality are discussed, with suggestions provided on how to overcome them. The result of this process was a feasible and acceptable web-based intervention to support family carers of persons with dementia residing in LTC.

Influences of the culture of science on nursing knowledge development: Using conceptual frameworks as nursing philosophy in critical care nursing.

Nursing knowledge development and application are influenced by numerous factors within the context of science and practice. The prevailing culture of science along with an evolving context of increasingly technological environments and rationalization within health care impacts both the generation of nursing knowledge and the practice of nursing. The effects of the culture of science and the context of nursing practice may negatively impact the structure and application of nursing knowledge, how nurses practice, and how nurses understand the patients and families for whom they care. Specifically, the nature of critical care and its highly technical environment make critical care nursing especially vulnerable to these potentially negative influences. The influences of the culture of science and the increasingly technical practice context may result in an overreliance on the natural sciences to guide critical care nursing actions and an associated marginalization of the caring relationship in critical care nursing practice. Within this environment, nursing philosophy may not be foundational to nursing actions; rather, the dominant culture of science and the rationalization of health care may be informing nursing practice. As such, the ideology and goals of nursing may not be central to the practice of critical care nursing. The purpose of this paper is to explore the influence of the culture of science on the development of nursing knowledge and theory. Further, we aim to describe the value of using conceptual frameworks, such as Roy's Adaptation Model, as a nursing philosophy to influence the development of person-centred nursing knowledge and theory to inform critical care nursing practice as it related to the care of patients and families. In doing so, nursing philosophy is situated as foundational for nursing actions.

A Comparison of Users and Nonusers of a Web-Based Intervention for Carers of Older Persons With Alzheimer Disease and Related Dementias: Mixed Methods Secondary Analysis.

BACKGROUND: A self-administered Web-based intervention was developed to help carers of persons with Alzheimer disease and related dementias (ADRD) and multiple chronic conditions (MCC) deal with the significant transitions they experience. The intervention, My Tools 4 Care (MT4C), was evaluated during a pragmatic mixed methods randomized controlled trial with 199 carers. Those in the intervention group received free, password-protected access to MT4C for three months. MT4C was found to increase hope in participants at three months compared with the control group. However, in the intervention group, 22% (20/92) did not use MT4C at all during the three-month period. OBJECTIVE: This mixed methods secondary analysis aimed to (1) examine differences at three months in the outcomes of hope, self-efficacy, and health-related quality of life (HRQOL) scores in users (ie, those who used MT4C at least once during the three-month period) compared with nonusers and (2) identify reasons for nonuse. METHODS: Data from the treatment group of a pragmatic mixed methods randomized controlled trial were used. Through audiotaped telephone interviews, trained research assistants collected data on participants' hope (Herth Hope Index; HHI), self-efficacy (General Self-Efficacy Scale; GSES), and HRQOL (Short-Form 12-item health survey version 2; SF-12v2) at baseline, one month, and three months. Treatment group participants also provided feedback on MT4C through qualitative telephone interviews at one month and three months. Analysis of covariance was used to determine differences at three months, and generalized estimating equations were used to determine significant differences in HHI, GSES, and SF-12v2 between users and nonusers of MT4C from baseline to three months. Interview data were analyzed using content analysis and integrated with quantitative data at the result stage. RESULTS: Of the 101 participants at baseline, 9 (9%) withdrew from the study, leaving 92 participants at three months of which 72 (78%) used MT4C at least once; 20 (22%) participants did not use it at all. At baseline, there were no statistically significant differences in demographic characteristics and in outcome variables (HHI, GSES, and SF-12v2 mental component score and physical component score) between users and nonusers. At three months, participants who used MT4C at least once during the three-month period (users) reported higher mean GSES scores (P=.003) than nonusers. Over time, users had significantly higher GSES scores than nonusers (P=.048). Reasons for nonuse of MT4C included the following: caregiving demands, problems accessing MT4C (poor connectivity, computer literacy, and navigation of MT4C), and preferences (for paper format or face-to-face interaction). CONCLUSIONS: Web-based interventions, such as MT4C, have the potential to increase the self-efficacy of carers of persons with ADRD and MCC. Future research with MT4C should consider including educational programs for computer literacy and providing alternate ways to access MT4C in addition to Web-based access. TRIAL REGISTRATION: ClinicalTrials.gov NCT02428387; https://clinicaltrials.gov/ct2/show/NCT02428387.

Interpretive phenomenological methodologists in nursing: A critical analysis and comparison.

Phenomenology is one of the most popular qualitative research methodologies used in nursing research. Although interpretive phenomenology is often a logical choice to address the concerns of nursing, the vast number of methods of phenomenology means choosing an appropriate method can be daunting, especially for novice researchers. It is critical that nurse researchers select a phenomenological method that fits the research problem and the skill and world view of the researcher; doing so will result in a research experience that resonates with and excites the researcher. The interpretive phenomenological methodologies of Benner, Munhall, and Conroy each offer unique methods of phenomenological inquiry. However, to date, we are not aware of any literature that explores and compares the methodological approaches of these nurses. In this paper, the origins and influence of phenomenology as both a philosophy and methodology on nurse researchers will be explored, followed by a critical analysis and comparison of these three nurses. By highlighting the distinctive differences and attributes of each method, this paper provides an analysis and comparison of the approaches of these prominent nurses. In doing so, we aim to aid the researcher in their methodological selection, thereby resulting in a successful and rewarding research endeavor.

Family caregiving for persons with advanced heart failure: An integrative review.

OBJECTIVE: The unique needs of caregivers of those with advanced heart failure (HF) are not effectively being met, and reports of physical and mental health challenges are common. The objective is to identify the current state of the literature related to family caregivers of persons with advanced HF, ascertain gaps that require further exploration, and provide preliminary practice recommendations based on the results. METHOD: Systematic review of quantitative and qualitative literature. A search of CINAHL, Medline, EMBASE, and PubMed identified 24 articles that met inclusion criteria. Data were analyzed using the constant comparison method and coded. Thematic analysis was used to develop themes. RESULT: Sixteen qualitative and seven quantitative studies met inclusion criteria. Analysis of these studies identified six key areas: (1) undertaking a journey in a state of flux, (2) gaining strength, (3) forgetting oneself along the way, (4) seeking out sources of support, (5) preparing for end of life, and (6) finding closure. SIGNIFICANCE OF RESULTS: The healthcare system currently struggles to meet the care demands of patients with chronic conditions such as advanced HF; as such, informal caregivers are undertaking key roles in the management of symptoms and promotion of the health of those with advanced HF. When caregivers are not adequately prepared for their role, both patient and caregiver well-being is compromised; therefore, a deeper understanding of the caregiving experience could assist in identifying the cause of caregiver anxiety and result in the development of strategies to minimize its effects. Overall, this review will also contribute to improving the current practice when working with caregivers of persons with advanced HF and serve as a basis for development of evidence informed interventions in the future.

Web-Based Intervention for Family Carers of Persons with Dementia and Multiple Chronic Conditions (My Tools 4 Care): Pragmatic Randomized Controlled Trial.

BACKGROUND: My Tools 4 Care (MT4C) is a Web-based intervention that was developed based on the transitions theory. It is an interactive, self-administered, and portable toolkit containing six main sections intended to support carers of community-living persons with Alzheimer's disease and related dementia and multiple chronic conditions through their transition experiences. OBJECTIVE: The objective of our study was to evaluate the effectiveness of MT4C with respect to increasing hope, self-efficacy, and health-related quality of life in carers of community-living older persons with Alzheimer's disease and related dementia and multiple chronic conditions. METHODS: A multisite, pragmatic, mixed methods, longitudinal, repeated-measures, randomized controlled trial was conducted between June 2015 and April 2017. Eligible participants were randomized into either treatment (MT4C) or educational control groups. Following baseline measures, carers in the treatment group received 3 months of password-protected access to MT4C. Trained research assistants collected data from participants via phone on hope (Herth Hope Index [HHI]), self-efficacy (General Self-Efficacy Scale), and health-related quality of life (Short Form-12 item [version 2] health survey; SF-12v2) at baseline, 1, 3, and 6 months. The use and cost of health and social services (Health and Social Services Utilization Inventory) among participants were measured at baseline, 3, and 6 months. Analysis of covariance was used to identify group differences at 3 months, and generalized estimating equations were used to identify group differences over time. RESULTS: A total of 199 carers participated in this study, with 101 participants in the treatment group and 98 in the educational control group. Of all, 23% (45/199) participants withdrew during the study for various reasons, including institutionalization or death of the person with dementia and lack of time from the carer. In the treatment group, 73% (74/101) carers used MT4C at least once over the 3-month period. No significant differences in the primary outcome measure (mental component summary score from the SF-12v2) by group or time were noted at 3 months; however, significant differences were evident for HHI-factor 2 (P=.01), with higher hope scores in the treatment group than in the control group. General estimating equations showed no statistically significant group differences in terms of mental component summary score at all time points. Attrition and the fact that not all carers in the treatment group used MT4C may explain the absence of statistically significant results for the main outcome variable. CONCLUSIONS: Despite no significant differences between groups in terms of the primary outcome variable (mental component score), the significant differences in terms of one of the hope factors suggest that MT4C had a positive influence on the lives of participants. TRIAL REGISTRATION: ClinicalTrials.gov NCT02428387; https://clinicaltrials.gov/ct2/show/NCT02428387 (Archived by Webcite at http://www.webcitation.org/708oFCR8h).

Study protocol: pragmatic randomized control trial of an internet-based intervention (My tools 4 care) for family carers.

BACKGROUND: Family carers of older persons with Alzheimer's' disease and related dementia (ADRD) and multiple chronic conditions (MCC) experience significant, complex, and distressing transitions such as changes to their environment, roles and relationships, physical health, and mental health. An online intervention (My Tools 4 Care) was developed for family carers of persons with ADRD and MCC living at home, with the aim of supporting these carers through transitions and increasing their self-efficacy, hope, and health related quality of life (HRQoL). This study will evaluate My Tools 4 Care (MT4C) by asking the following research questions: 1. Does use of MT4C result in a 3 month (immediately post intervention) and 6-month (3 months after intervention) increase in HRQoL, self-efficacy, and hope, in carers of persons with ADRD and MCC compared to an educational control group? 2. Does use of MT4C help carers of community-dwelling older adults with ADRD and MCC deal with significant changes they experience as carers? and 3. Are the effects/benefits of the MT4C intervention achieved at no additional cost compared to an educational control group? METHODS/DESIGN: Using a pragmatic mixed methods randomized controlled trial design, 180 family carers of community dwelling older persons (65 years of age and older) with ADRD and MCC will participate in the study. Data will be collected from the intervention and an educational control group at four time points: baseline, 1 month, 3 and 6 months. We expect to find that family carers using MT4C will show greater improvement in hope, self-efficacy and HRQoL, at no additional cost from a societal perspective, compared to those in the educational control group. General estimating equations will be used to determine differences between groups and over time. DISCUSSION: Data collection began in Ontario and Alberta Canada in June 2015 and is expected to be completed in June 2017. The results will inform policy and practice as MT4C can be easily revised for local contexts and is scalable in terms of posting on websites such as those hosted by the Alzheimer Society. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT02428387.

Honoring the voices of bereaved caregivers: a Metasummary of qualitative research.

BACKGROUND: Family caregiving in the context of advanced disease in particular, can be physically and emotionally taxing. Caregivers can subsequently face bereavement exhausted with few supports, limited resources and a significant proportion will develop negative psychological and social outcomes. Although some research has attended to the bereavement experiences of family caregivers who had cared for a person requiring palliative care, a comprehensive qualitative understanding of the impact of caregiving on bereavement has not been articulated. The purpose of this study was to conduct a qualitative metasummary to explore the experiences of bereaved family caregivers of people who received palliative care services, regardless of their underlying disease. METHODS: Sandelowski and Barroso's qualitative metasummary method was utilized: 1287 articles were identified through extensive database searches (i.e. - MEDLINE, PsychINFO, and CINAHL) and reviewed to determine if they fit the criteria. Those included in the review were assessed for study quality. Findings from each study were then thematically coded and a frequency of themes was calculated. RESULTS: The sample consisted of 47 qualitative studies. A total of 15 themes emerged. In descending order of frequency, the 15 themes were: the individual emotions of serenity, sadness, guilt, uncertainty, trauma, escape, and anger; post-loss experiences that helped the caregiver in bereavement; post-loss experiences that hindered; practical life changes; caregiver role identity; pre-loss experiences that helped; pre-loss experiences that hindered; caregiver context; and a need for different kinds of supports. Three key findings emerged from the themes: (1) many different aspects of the caregiving experience impact the bereavement experience, (2) every bereavement experience is unique, and (3) a variety of supports must be developed and made available to caregivers to meet these unique needs. CONCLUSIONS: Based on the metasummary findings, changes are needed in practice and policy to ensure the health and well-being of the family caregiver is maintained by offering support both during caregiving and bereavement.

A Canadian qualitative study exploring the diversity of the experience of family caregivers of older adults with multiple chronic conditions using a social location perspective.

BACKGROUND: A little-studied issue in the provision of care at home by informal caregivers is the increase in older adult patients with chronic illness, and more specifically, multiple chronic conditions (MCC). We know little about the caregiving experience for this population, particularly as it is affected by social location, which refers to either a group's or individual's place/location in society at a given time, based on their intersecting demographics (age, gender, education, race, immigration status, geography, etc.). We have yet to fully comprehend the combined influence of these intersecting axes on caregivers' health and wellbeing, and attempt to do this by using an intersectionality approach in answering the following research question: How does social location influence the experience of family caregivers of older adults with MCC? METHODS: The data presented herein is a thematic analysis of a qualitative sub-set of a large two-province study conducted using a repeated-measures embedded mixed method design. A survey sub-set of 20 survey participants per province (n = 40 total) were invited to participate in a semi-structured interview. In the first stage of data analysis, Charmaz's (2006) Constructivist Grounded Theory Method (CGTM) was used to develop initial codes, focused codes, categories and descriptive themes. In the second and the third stages of analysis, intersectionality was used to develop final analytical themes. RESULTS: The following four themes describe the overall study findings: (1) Caregiving Trajectory, where three caregiving phases were identified; (2) Work, Family, and Caregiving, where the impact of caregiving was discussed on other areas of caregivers' lives; (3) Personal and Structural Determinants of Caregiving, where caregiving sustainability and coping were deliberated, and; (4) Finding Meaning/Self in Caregiving, where meaning-making was highlighted. CONCLUSIONS: The intersectionality approach presented a number of axes of diversity as comparatively more important than others; these included gender, age, education, employment status, ethnicity, and degree of social connectedness. This can inform caregiver policy and programs to sustain health and well-being.

Factors influencing changes in health related quality of life of caregivers of persons with multiple chronic conditions.

BACKGROUND: The majority of care for older adults with multiple chronic conditions (MCC) is provided by family (including friends) caregivers. Although caregivers have reported positive benefits to caregiving they also experience decreases in their physical and mental health. As there is a critical need for supportive interventions for this population, it is important to know what influences the health of family caregivers of persons with MCC. This research examined relationships among the changes from baseline to 6 months in health related quality of life (SF12v2) of family caregivers caring for older adults with multiple chronic conditions and the following factors: a) demographic variables, b) gender identity [Bem Sex Role Inventory (BSRI)] c) changes in general self-efficacy [General Self Efficacy Scale (GSES) (baseline to 6 months) and d)) changes in caregiver burden [Zarit Burden Inventory (ZBI)] baseline to 6 months. Specific hypothesis were based on a conceptual framework generated from a literature review. METHODS: This is a secondary analysis of a study of 194 family caregivers who were recruited from two Canadian provinces Alberta and Ontario. Data were collected in-person, by telephone, by Skype or by mail at two time periods spaced 6 months apart. The sample size for this secondary analysis was n = 185, as 9 participants had dropped out of the study at 6 months. Changes in the scores between the two time periods were calculated for SF12v2 physical component score (PCS) and mental component score (MCS) and the other main variables. Generalized Linear Modeling was then used to determine factors associated with changes in HRQL. RESULTS: Participants who had significantly positive increases in their MCS (baseline to 6 months) reported lower burden (ZBI, p < 0.001), and higher general self-efficacy (GSES, p < 0.001) and Masculine BSRI (p = 0.025). There were no significant associations among variables and changes in PCS (baseline to 6 months). CONCLUSIONS: Our findings suggest that a masculine gender identity (which incorporates assertive and instrumental approaches to caregiving), and confidence in the ability to deal with difficult situations was positively related to improvement in mental health for caregivers of persons with MCC. Decreases in perceptions of burden in this populations was also associated with improvements in mental health. Further research is needed to explore ways to support caregivers of older persons with multiple chronic conditions living at home.

Light therapy for improving cognition, activities of daily living, sleep, challenging behaviour, and psychiatric disturbances in dementia.

BACKGROUND: Rest-activity and sleep-wake cycles are controlled by the endogenous circadian rhythm generated by the suprachiasmatic nuclei (SCN) of the hypothalamus. Degenerative changes in the SCN appear to be a biological basis for circadian disturbances in people with dementia, and might be reversed by stimulation of the SCN by light. OBJECTIVES: The review examines the effectiveness of light therapy in improving cognition, activities of daily living (ADLs), sleep, challenging behaviour, and psychiatric symptoms associated with dementia. SEARCH METHODS: ALOIS, the Specialized Register of the Cochrane Dementia and Cognitive Improvement Group (CDCIG), The Cochrane Library, MEDLINE, EMBASE, PsycINFO, CINAHL and LILACS were searched on 20 January 2014 using the terms: "bright light*", "light box*", "light visor*", "dawn-dusk*", phototherapy, "photo therapy", "light therapy" "light treatment", light* . The CDCIG Specialized Register contains records from all major healthcare databases (The Cochrane Library, MEDLINE, EMBASE, PsycINFO, CINAHL, LILACS) as well as from many trials databases and grey literature sources. SELECTION CRITERIA: All relevant, randomized controlled trials were included in which light therapy, at any intensity and duration, was compared with a control group for the effect of improving cognition, ADLs, sleep, challenging behaviour, and psychiatric symptoms associated with dementia (as well as institutionalization rates or cost of care). Included were people with dementia of any type and degree of severity. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed the retrieved articles for relevance, and four review authors independently assessed the selected studies for risk of bias and extracted the data. Statistically significant differences in outcomes between the treatment and control groups at the end of treatment and follow-up were examined. Each study was summarized using a measure of effect (for example mean difference). MAIN RESULTS: Eleven trials (13 articles) met the inclusion criteria. However, three of the studies could not be included in the analyses either because the reported data could not be used in the meta-analysis or we were unable to retrieve the required data from the authors.This updated review found no effect of light therapy on cognitive function, sleep, challenging behaviour (for example agitation), or psychiatric symptoms associated with dementia. Reduction in the development of ADL limitations was reported in one study, at three of five time points, and light therapy was found to have an effect after six weeks and two years but not after one year. AUTHORS' CONCLUSIONS: There is insufficient evidence to justify the use of bright light therapy in dementia. Further research should concentrate on replicating the suggested effect on ADLs, and establishing the biological mechanism for how light therapy improves these important outcomes.

The journey with dementia from the perspective of bereaved family caregivers: a qualitative descriptive study.

BACKGROUND: With increasing rates of dementia among older adults, many people will be affected by this disease; either by having the disease or by caring for a relative with dementia. Due to a shift toward home and community-based care there will be an increase in the number of family caregivers caring for persons with dementia. The caregiving experience in the dementia journey is influenced by many factors. Currently there is a paucity of research that examines the dementia caregiving experience from the perspective of bereaved caregivers or that presents the complete caregiving journey. The purpose of this study was to describe the dementia caregiving journey as revealed by bereaved family caregivers. METHODS: This study utilized qualitative description to describe the overall dementia caregiving journey as told by 11 bereaved caregivers. Open-ended interviews resulted in rich detailed descriptions of the caregiving journey from before a dementia diagnosis and into bereavement. RESULTS: Findings are discussed based on the following caregiving themes: (a) getting a diagnosis; (b) managing at home; (c) transition to long-term care; (d) end of life; and (e) grief in bereavement. Subthemes reflect the dementia caregiving journey using the words of the participants. Participants spoke of grieving throughout the caregiving experience. CONCLUSIONS: Bereaved caregivers have similar experiences to active caregivers over comparable points in the journey with dementia. Findings from this work contribute new understanding to the literature around the unique perspective of bereaved caregivers, while presenting the overall dementia caregiving journey.

The lived experience of family caregivers who provided end-of-life care to persons with advanced dementia.

OBJECTIVE: Dementia is a terminal illness, and family caregivers play a vital role in providing end-of-life care to their relative. The present study begins to address the paucity of research regarding end-of-life caregiving experience with dementia. METHOD: This study utilized Munhall's methodology for interpretive phenomenology. Seven women and four men were interviewed two to three times within a year of their relative's death; interviews were transcribed verbatim and hermeneutically analyzed. RESULTS: Findings reveal two essential aspects of end-of-life dementia caregiving: being-with and being-there. Further findings are organized according to the existential life worlds. Examination of the life worlds demonstrates that 1) spatiality provided a sense or lack of feeling welcome to provide end-of-life care; 2) temporality was an eternity or time melting away quickly, or the right or wrong time to die; 3) corporeality revealed feelings of exhaustion; and 4) relationality was felt as a closeness to others or in tension-filled relationships. SIGNIFICANCE OF RESULTS: An understanding from bereaved caregivers' perspectives will help healthcare practitioners better support and empathize with family caregivers. Further research is warranted that focuses on other places of death and differences in experience based on gender or relationship to the care receiver.

Mapping the Caregiver Experience in a Canadian Province: Research Methodology for the Saskatchewan Caregiver Experience Study.

BACKGROUND: Policies and services for older adults are increasingly focused on living in the community, rather than relying on institutions. A total of 70-80% of community care for older adults is provided by family and friend caregivers. With Canada's aging population, the number of caregivers to older adults is growing. PURPOSE: The purpose of this paper is to describe the research methodology that was employed in the Saskatchewan Caregiver Experience Study. The methodology was used to map the experiences and gather perspectives of caregivers in Saskatchewan and to identify their priority support needs. METHODS: Qualitative description was the approach in this study. An online qualitative survey was administered via SurveyMonkey and distributed via Facebook and community newsletters. The survey collected caregiver demographics and asked three open-ended questions regarding: (1) the challenges that caregivers experience; (2) the positive aspects of caregiving; and (3) the support needs and priorities of Saskatchewan caregivers. A fourth question where caregivers could freely express any other experiences or perspectives was included. Content analysis was the method used for data analysis. RESULTS: 355 individuals met the inclusion criteria for this study. Participants were evenly distributed amongst urban-large, urban-small/medium, and rural settings in Saskatchewan. The average age of caregivers and care recipients were 61 and 83 respectively. CONCLUSION: This study has implications for research, practice, and policy. By gathering the full spectrum of the caregiver experience in Saskatchewan, this study can help to inform how communities, governments, and our healthcare system can best support caregivers in their role.