This qualitative study explores spouse caregivers’ understanding of and responses to partners with dementia. Six wives who had been providing care to their husbands in the community for at least two years were interviewed. Transcripts were analysed using Interpretative Phenomenological Analysis (IPA) and four interconnected themes were proposed: same person or different; relational change; emotional responses to behaviours; and impact on day-to-day life. Participants’ sense of continuity with the past was suggested to influence each theme. The construct of continuity was proposed to be elastic, with both intra-psychic and inter-psychic factors impacting upon its elasticity. Broadly, a sense of continuity seemed to be associated with better adjustment to caregiving.

As the incidence of elderly-type illnesses such as Alzheimer's Disease continues to increase along with the elderly population in Canada, the particular health concerns and formal service needs of dementia patients and their caregivers are becoming more apparent and important to researchers, policy analysts, and ministry representatives. Institutional respite is one service that has been consistently underutilized by the Alzheimer's population, but little research has been conducted to determine the reasons behind why this is the case. As part of its Alzheimer strategy, the Ontario Government has promised to invest $7 million annually into respite services for caregivers. It is essential that these monies be used as appropriately as possible and in ways that best assist caregivers, and one of the easiest ways to do this is to include caregiver input in the processes of service evaluation, modification, and development. This study focuses on uncovering the issues that contribute to Alzheimer's caregivers underutilization of institutional respite, with the hope that this paper and like papers in the future will contribute to the development of more generous and more appropriate respite services for families caring for persons with Alzheimer's Disease. / Thesis / Master of Social Work (MSW)

Objective This study explores how caregiver relationship quality with family, patient, and patient's health care provider (HCP) is associated with subjective caregiver burden during the early treatment phase for late-stage cancer. Method Burden and relationship quality were assessed in telephone interviews with family caregivers (FCGs) of advanced cancer patients. The five subscales of the Caregiver Reaction Assessment measured burden, while relationships were measured with the Family Relationship Index, the Family Inventory of Needs subscale of met needs, and a scale assessing family discord in cancer communication. Results Multiple linear regression analyses in SPSS (v16) of 420 FCGs showed that higher quality relationship with family was associated with lower burden in FCG abandonment, health, scheduling (p<0.001) and finances (p<0.01). Higher quality relationship with patients' HCPs was associated with lower burden in FCG abandonment (p< 0.05), health, and finances (p<0.001). More discordant communication in patient relationship was associated with lower financial burden (p<0.05). Relationship quality was not associated with caregiver self-esteem. Conclusions Findings demonstrate that caregiver relationship quality with family and with HCP are important factors in understanding caregiver burden during the early treatment phase of late-stage cancer care.

Hospice services are utilized by more than 1.6 million people yearly, and there are a great number of caregivers who are tasked with caring for these individuals at home. Caregivers are at risk for fatigue, burnout, and decline in their own physical and mental health. While the Centers for Medicare and Medicaid Services (CMS) cover costs of temporary respite care for hospice patients, the caregivers' needs for respite care are often unrecognized and unaddressed. The purpose of this project was to plan a respite program within the hospice agency consisting of revised respite policy and procedures, the Caregiver Reaction Assessment (CRA) tool to routinely assess the caregiver for burnout and/or fatigue, and a detailed outline for the implementation of respite care. Anderson's behavioral model of service was used to guide the project's understanding of the underutilization of respite services. This project was guided by the practice-focused question examining the development of an evidence based caregiver respite program within the hospice agency. The program was developed based on a review of peer reviewed research studies and the input of a project team of local experts. The project team participated in the project that created a respite policy which includes a biweekly caregiver assessment and step-by-step directions on how to implement respite care. A final report was developed and submitted to the Hospice agency. This revised policy and procedure includes a blueprint for implementation and a full set of recommendations on the process, use of the CRA, educational in-services, and evaluative methods. These recommendations have the potential for positive social change by increasing patient and caregiver outcomes, serving as an example for other hospice agencies to follow, and improving care at the end of life.

Stroke är den tredje vanligaste dödsorsaken i Sverige och risken för att insjukna ökar med stigande ålder. Vid stroke har personen drabbats antingen av en infarkt eller av en blödning i hjärnan. Restsymtomen efter en stroke kan uttrycka sig på olika vis. Vanligaste symtomen är domningar eller förlamningar i ansikte, armar och ben. Rehabilitering efter en stroke kan ta lång tid och efter sjukhusvistelsen är det ofta närstående som tar det största ansvaret för omvårdnaden av personen som drabbats av stroke. Syfte med studien var att undersöka närståendes upplevelser och erfarenheter av att vårda en person som drabbats av stroke. Litteraturöversikten genomfördes genom kritisk granskning och analys av kvalitativa och kvantitativa vårdvetenskapliga artiklar, enligt analysmodellen av Friberg (2006). Litteratursökningen gjordes i databaserna Cinahl och Pubmed. I resultatet framträdde två huvudteman : Förändrad livsvärld och Upplevelser och erfarenhet med hälso- och sjukvårdspersonal. Resultatet visade att närstående upplevde en stor livsförändring där rutiner och livsmönster ändrades och anpassades efter personen som drabbats av stroke. Det gjorde att närstående upplevde att det inte fanns tid för egna intressen. Närstående upplevde både psykisk- och fysisk ohälsa som stress, depression, ångest, högt blodtryck, magsmärtor och sömnsvårigheter. Många närstående upplevde att informationen från hälso- och sjukvårdspersonalen var otillräcklig. Det medförde att närstående kände sig osäkra på att vårda den som drabbats av stroke. Sjuksköterskor har möjlighet att påverka närståendes upplevelser genom att bemöta dem på ett respektfullt och lyhört sätt. Det handlar också om att de kan identifiera informationsbehovet för att ge adekvat information som kan stilla närståendes oro. / Program: Sjuksköterskeutbildning

In the literature, the experience of ‘care’ and ‘caregiving’ has been well documented and widely researched. Caregivers are recognized as people (family and friends) who provide unpaid substantial care for family members. Over time, research has increased awareness of caregivers as a distinct social group and has also contributed to caregiving being a widely recognized social issue. However, despite this increased awareness and continued concern for caregivers, much of the literature focuses on adult caregivers. As a result, the experiences of other caregiving populations, such as the youth and young adults, continues to be overlooked and underrepresented. Therefore, there is a need to explore and understand the unique experience of this population and how they give meaning to their experiences. Young caregivers (YCs) are children (5-18) and young adults (18-25) who provide substantial (unpaid) care for a family member who has an illness or disability (Stamatopoulos, 2016). Research on this population is scant and there exists many notable gaps in the literature in terms of diversity, age-based differences, programming and best practices for intervention. More specifically, there is a gap in understanding the experiences of young caregivers who are affected by progressive and incurable chronic brain diseases such as Alzheimer’s Disease or a Related Dementia. As such, this dissertation explores the experiences of YACs affected by ADRD, in terms of their personal experiences with ADRD (knowledge, dementia care and care practices), perceptions of their caregiving role and how they navigate the caregiving role. It builds on scholarship on young caregivers to broaden existing knowledge by using a phenomenological approach, known as Interpretive Phenomenological Analysis, to explore their caregiving experiences and the meaning they give to these experiences in-depth (n=12). It also aims to challenge the dominant assumptions about young caregivers by giving voice to this population by situating the young caregivers as the experts in their own lives. Findings indicate that the caregiving experience for YACs is complex, and situated within a larger socio-political context, which impacts the overall experience of care. Overall, the findings contribute to knowledge on the experiences of care among YACs and highlight the need for more inclusive research and practices on addressing caregiving among this group. / Dissertation / Candidate in Philosophy / This dissertation explores the lived experiences of young adult caregivers (YACs) caring for an older adult with Alzheimer’s Disease or a Related Dementia. Research on this group of caregivers is limited, particularly YACs (ages 18-25) who provide substantial (unpaid) caregiving for an older adult affected by Alzheimer’s or a Related Dementia. Therefore, a key aim of this research is to generate awareness and shed light on the nature of caregiving as experienced by this overlooked population of caregivers. As such, this dissertation aims to understand how young caregivers give meaning to, interpret and make sense of their caregiving experience. To understand the caregiving experience of YACs, I conducted interviews with 12 YACs from Canada and the United States and analyzed their perspectives in detail. The findings shed light on the many factors that shape the caregiving experiences. In addition, the findings show that more research is needed to understand the differences amongst young caregivers to better support their needs. In general, the research can contribute to existing knowledge on young adult caregivers, as well as relevant programs and policies.

Today, more than ever, there exists an overlap between hospitality and healthcare industries; with the impact being felt in the way hospital interiors are designed. This influence impacts the patient’s experience but focuses very little on the experience of the caregiver. Caring for a sick child takes an emotional, mental, and physical toll on a family. It is especially challenging to care for a sick family member when away from the comfort and security of the family’s private home. This project explores that challenge through the interior design of a space that, for both patient and family, is restorative, healing, and encouraging. It is a space that assists a family in caring for their loved one.

Much effort has been expended to increase the awareness and understanding of play therapy among consumers and practitioners (Landreth, 1991) since its introduction by Virginia Axline during the 1940s. As with any form of counseling, Leblanc and Ritchie (1999) have noted there are factors considered key to successful play therapy treatment outcomes. Play therapy research shows a positive relationship between parent's involvement in play therapy and successful outcomes (LeBlanc & Ritchie, 1999; Bratton, Ray, Rhine, & Jones, 2005) but little research exists to document specific practice patterns and perceptions of play therapists in relation to achieving caregiver engagement. The purpose of this study was to identify the practice patterns of play therapists, their perceptions of the factors that influence caregiver engagement, their perceptions of the relationship between caregiver engagement and the therapeutic outcome for the child client, and their perceptions of the barriers to achieving caregiver engagement in play therapy. The Caregiver Engagement Inventory (CEI), a 36-item, structured and semi-structured questionnaire developed for this research, was electronically sent to 4854 members of the Association for Play Therapy (APT), resulting in 539 responses, 431 of which were deemed appropriate for inclusion. Of the 423 participants who responded, 292 (69%) strongly agreed and 107 (25%) agreed that caregiver engagement is related to a child’s therapeutic outcome in play therapy. Fifty-three percent (n=228) of respondents strongly agreed that they are prepared to facilitate caregiver engagement in play therapy, and 35% (n=151) agreed. These results suggested that, while 94% of play therapists who responded believe caregiver engagement is a large factor in successful play therapy outcomes, only 88% of the participants feel prepared to accomplish the task with caregivers of their child clients. The results indicated a relationship between training and play therapists’ practice patterns related to caregiver engagement, but participants reported minimal exposure to training specific to working with caregivers in both their graduate programs and workshops. Findings indicated that play therapists value caregivers’ roles in play therapy; however, barriers exist to caregiver engagement. Implications for play therapists, educators of mental health professionals, and future research are discussed. Keywords: play therapy, caregiver, engagement

MSc, Occupational Therapy, Faculty of Health Sciences, University of the Witwatersrand / Infants and toddlers living in residential care facilities are at risk of developmental delay. Environmental factors contributing to this risk are the temporal context (how children spend their time) and social context (how and when caregivers interact with children). This study compared time-use patterns of children living in residential care facilities where caregiver training had previously taken place versus those in facilities where caregiver training had not taken place using a non-experimental, cross-sectional static group comparison study design. Spot observations were used to estimate time-use patterns of infants and toddlers living in residential care in Johannesburg. Results show that caregiver training increased the quantity of time infants spent with their caregivers (temporal context) and the quality of time toddlers spent with their caregivers (social context). Thus caregiver training has the potential to improve the environment in residential care facilities and can be used as an intervention strategy by occupational therapists.

Thesis advisor: Ellen Mahoney / The diagnosis of a primary malignant brain tumor (PMBT) can be devastating for individuals and their families due to the limited treatment options and poor prognosis. Patients often rely on family members to manage their care; however, many caregivers feel under-prepared and overwhelmed by the experience. Though caring for a person with a PMBT is challenging and complex, little research has addressed the family caregiver's performance. The purpose of this study was to identify the extent to which preparedness and caregiver role strain explained the family caregiver’s performance in symptom management. An adapted theoretical framework, The Theory of Unpleasant Symptoms for Family Caregivers, guided this study. The study employed a descriptive, correlational research design in which the researcher obtained cross-sectional data during one collection period. The participants were adults who identified themselves as family caregivers of persons with a PMBT. Forty caregivers were enrolled in the study at the Brain Tumor Center at Beth Israel Deaconess Medical Center. Results from the regression analyses indicated that caregiver role strain and preparedness explained 31% of the variance (adjusted R2) in perceived psychological symptom distress and 29% (adjusted R2) of the variance in perceived physical symptom distress. Caregiver role strain was the major contributor to psychological (B=.68, p=.000) and physical symptoms (B=.48, p=0.001), indicating that higher levels of caregiver role strain were predictive of higher levels of perceived symptom distress and this relationship was strong. Preparedness contributed less to the explained variance in psychological (B=-.24, p=.20) and physical symptoms (B=-.21, p=.14). The negative beta indicates that higher preparedness was related to lower perceived symptom distress, but this relationship was small when compared with role strain. This study informs clinicians in neuro-oncology that care giver role strain is often high in family caregivers of patients with a PMBT and can have a negative impact on caregiver performance. These findings also support the need for more tailored nursing interventions to assist caregivers with ways to decrease caregiver role strain and improve caregiver preparedness. / Thesis (PhD) — Boston College, 2008. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.