The purpose of this study was to evaluate the impact the primary caregiving role had on men's perceptions of leisure. The Assessment of Leisure and Recreation Involvement (Ragheb, 2002) was used to examine men's leisure. Twenty-five stay-at-home dad groups were solicited via e-mail; 81 men submitted usable responses to an online survey. Respondents considered themselves the primary caregiver for children in the household and at least one child was younger than 12. Descriptive data were collected about the experience of being a primary caregiving father, demographics, and how the caregiving role affects the men's perceptions of leisure. Caregiving fathers in the sample resembled the perceptions of many primary caregiving mothers. Perhaps the "caregiving" role, rather than gender, is a more distinct variable explaining perceptions of leisure by parents.

Caregiving can be stressful, and older adults’ health and well-being may be impacted by the roles and responsibilities they assume as caregivers for persons with serious mental illness (SMI). This study is the first to apply the Stress Process Model of Caregiving (SPM) in an attempt to understand how mental illness stigma influences caregiver outcomes, specifically their desire to relinquish care. The intent of this study was to call attention to care relinquishment as an under-studied stress process outcome and to explore stress factors, with a focus on mental illness stigma, that contribute to SMI caregivers’ desire to relinquish care. Using convenience sampling, members of the National Alliance on Mental Illness in the eastern U.S. were invited to participate in an online survey, resulting in a sample of n = 285. Regression analysis findings suggest that caregivers’ partnership status, exposure to problematic behaviors, and perceptions of courtesy stigma predicted desire to relinquish care. Neither age nor caregiver sense of mastery moderated the relationship between perceived courtesy stigma and relinquishment desire. Perceptions of stigma were negatively associated with caregiver health, sense of mastery, and social support levels, indicating stigma’s role in the erosion of caregiver resources. This study provides information that can inform the development of educational and supportive services that may help caregivers better cope with the stressors associated with SMI caregiving. With caregiving stressors diminished, older caregivers will be able to better apply their resources toward self-care and maintaining their quality of life.

Bakgrund: Andelen vårdtagare som är i behov av palliativ vård i hemmet ökar och därmed också andelen närståendevårdare som utgör en viktig del av vården. Det är en svår övergång att gå från närstående till närståendevårdare och därför är det viktigt för vårdpersonalen att främja närståendevårdarens roll som en god resurs i vårdteamet. Syfte: Att beskriva närståendevårdares erfarenheter av palliativ vård i hemmet. Metod: En litteraturöversikt med en sammanställning och analys av totalt tolv vetenskapliga kvalitativa artiklar. Resultat: Tre kategorier framkom i resultatet; interaktion med vårdpersonalen, utsatthet samt teamarbete och delaktighet. Närståendevårdarna hade ett stort behov av en god vårdrelation och kommunikation med vårdpersonalen och de ville ha en tydlig roll i vårdteamet. De ville även bli bekräftade och sedda som en individ med egna behov samtidigt som de tyckte det var problematiskt att sätta sina egna behov i främsta rummet. Slutsatser: Närståendevårdares erfarenheter av palliativ omvårdnad i hemmet har visat sig vara mångtydigt på grund av individuella behov. Det är en balansgång att som vårdpersonal se till de aktuella behoven och kunna bemöta närståendevårdare på bästa sätt. Vårdpersonal ska, för att optimera den palliativa hemsjukvården, individ- och situation anpassa med hjälp närståendevårdarna som en stor del av teamsamverkan. / Background: The proportion of patients who are in need of palliative care in the home increases and therefor the proportion of informal carers’ increase. It is a difficult transition to go from next of kin to informal carer and therefore it is important for the professional care team to promote informal caretaking role as a good resource in the care team. Objective: To describe informal carers’ experience of palliative home care. Method: A literature review with summary and analysis of twelve qualitative articles. Results: Three main categories emerged in the results; interaction with caregivers, exposure and teamwork and participation. Informal carers had a great need of a good care relationship and communication with the medical staff and they wanted a clear role in the care team. They wanted to be confirmed and seen as individuals with individual needs while they thought it was problematic to put their own needs first. Conclusions: Carers experiences of palliative care in the home has proved to be ambiguous due to individual needs. There is a balancing act to how healthcare professionals have to meet the current needs and to respond to informal carers in the best way. It is therefore important for the healthcare professionals to individualize and adapt the care regarding different situations in palliative home care with help from the informal carers as a big part of the teamwork to optimize the care.

Nursing research has been performed during the last 20-30 years, about the next of kin’s vulnerability. Despite this, the health care system has had difficulties to integrate the next of kin in a way that gives support. The overall aim of the thesis was to describe and further explore the life situation of the next of kin to persons who are long-term ill, disabled, and/or older, and in need of care. Method: Multiple methods were used. Study I had a descriptive design, 44 next of kin of patients with multiple sclerosis were interviewed, latent content analysis was used for the analysis. Study II had a mixed method approach; the descriptive core study was analyzed with directed content analysis. The supplementary study with descriptive, correlative design was analyzed with descriptive and correlative statistics. Forty-four next of kin of patients with multiple sclerosis were interviewed; thereafter 37 of them answered a questionnaire about Quality of Life. Study III had a descriptive, explorative design. Twelve next of kin of older persons were interviewed with repeated informal conversational interviews, analyzed with latent content analysis. Study IV was cross-sectional with a descriptive, correlative design. Eighty-four next of kin of persons who were long-term ill, disabled, and/or older answered two questionnaires about Burden and Quality of Life that were analyzed with descriptive and correlative statistics. Results and Conclusions: Next of kin described a balance/imbalance in their relations to others and a high burden, but in general a good Quality of Life. Some next of kin also experienced chronic sorrow. Significant correlations were found between interpersonal relations and Quality of Life as a whole. Love and obligations were two anchor points on a continuum, describing the next of kin’s relationship to the ill/disabled person. The relationship with the health care personnel was described through cooperation and obligations. Good communication was seen as the key to balance the relationship with others. One possibility to achieve symmetrical communications is to adapt the Partnership Model, as a tool for creating good relationships. Honest and specific communication between the health care personnel, the next of kin, and the care receiver are necessary.

Background: Depression is a common condition that affects the life of the person suffering from depression as well as their surroundings. Relatives of the person suffering from depression are affected by the condition and among these the partner is one of the most affected. The partner can be affected both physically and mentally from living with a person suffering from depression. Aim: The aim of the study was to explore partners’ experiences of living with a person suffering from depression. Method: The chosen method for this study was a literature review. The data was collected through both systematic and unsystematic searches. Eight articles were included, both qualitative and quantitative. The analysis was conducted according to a model made for literature reviews, where the data was compiled and sorted into descriptive themes. Results: The results of this study yielded three themes of experiences, including one with two subthemes. (1) Experience of how the daily life is affected (subthemes: experience of living on another person’s terms, and experience of how the situation affects the mental and physical health). (2) Experience of the need for knowledge. (3) Experience of being able to cope with the situation. Conclusion: The study shows that partners of people with depression need to be more included in the patient’s care. They also need to be offered information and support to make it easier to cope with the situation. The results of the study also shows that more research is needed on the subject.

In the United States, familial caregivers provide approximately 80% of the long term elderly care and are at risk for mental health problems. As family members provide care, relationships shift from mutual support to increasing dependency on the caregivers, who in turn often experience a shift in self-concept from their prior relational role to include identification as caregiver for the care recipient. Affectional solidarity, or emotional relationship quality, can influence how caregivers experience their shifting role in relationship to a loved one. The study examined whether role importance is associated with caregiver depression over time, and tested the moderating role of affectional solidarity in this association. A subset of caregivers (N = 57) from the Longitudinal Study of Generations constituted the sample from which role importance, affectional solidarity, and Center for Epidemiological Studies Depression reports were analyzed using longitudinal hierarchical regression. Findings did not support hypotheses. Results suggested that affectional solidarity may be important to consider among familial caregivers as a potential protective factor for depression. Implications for future research and practitioners are discussed.

OBJECTIVE: Pediatric cancer treatment is stressful for caregivers. Research has indicated that problem-solving coping reduces stress related to caregiving. The current study examines the effects of a problem-solving intervention (Parent Empowerment Program), based on Problem-Solving Therapy, for caregivers of children on active cancer treatment. It was hypothesized that participants who received the intervention would show decreases in caregiving stress and posttraumatic stress symptoms, and increases in problem-solving ability between baseline and post-test assessments compared to those who received an attention control. METHOD: Thirty-nine caregivers (all parents; 48% participation rate) participated. The majority were mothers (90%), married or partnered (59%) and Caucasian (56%). Participants were randomly assigned to condition (intervention vs. attention control) after completing baseline questionnaires. Participants who received the intervention received one session of problem solving intervention and a follow-up session. Those in the attention control condition received two general support sessions. Participants were assessed at baseline, one month after the second session, and three months after the second session. RESULTS: There were no effects of the intervention on any of the outcome variables when data for all participants was examined. However, there was a significant effect of the intervention on problem-solving ability among participants of children between 4-16 weeks post-diagnosis. CONCLUSIONS: There were many factors that contributed to the lack of effect, including small sample size, variations in time since diagnosis, low participation rates, and limited number of sessions. Future studies should target parents who are under the highest levels of stress and increase the intensity of sessions. However, the finding that the intervention has an effect on problem-solving ability early in the treatment trajectory replicates previous research and has potential clinical utility.

The vast majority of persons with Alzheimer’s disease and related dementias live at home and are cared for by families or close friends/neighbors. An essential element to daily care decisions is the caregiver’s appraisal of function in the family member with dementia. This dissertation comprises three separate papers exploring caregiver appraisal of functional capacity, using secondary data from a study conducted at Thomas Jefferson University of 88 patient-caregiver dyads, funded by the Alzheimer’s Association (L. Gitlin, PhD, principal investigator; Grant # IIRG-07-28686). The caregivers were primarily female (88.6%), white (77.3%), and spouses (55.7%), with a mean age of 65.8. All caregivers had a high school education or higher and had provided care from 6 months to 22 years. The majority of the participants with dementia were female (52.3%) and white (76.1) with a mean age of 81.7. Their scores on the MMSE ranged from 10 to 28 (M = 17.7, SD = 4.6, N = 87). The first paper examined construct and interrater reliability of the Functional Capacity Card Sort (FCCS), a tool designed to measure subjective caregiver appraisal. Using spearman’s rank correlations the FCCS was found to be statistically associated with the Caregiver Assessment of Function and Upset scale (r = .43, p < 0.0001, N = 86) and not statistically associated with the Neuropsychiatric Inventory scale (r = -.14, p = .16, N = 86), supporting convergent and discriminant validity respectfully. Kendall’s coefficient of concordance revealed a strong agreement among caregivers in the ranking of the six cards of the FCCS, Kendall W (5, 72) = 0.83, p = .0001, supporting interrater reliability of the FCCS. The second and third paper demonstrated the utility of the FCCS in distinguishing three groups of caregivers based on their estimation of functional capacity in the person with dementia compared to a gold standard occupational therapy assessment. Fifty-two (61%) of the caregivers overestimated function, 19 (22%) caregivers underestimated function, and 15 (17%) were concordant with the standardized assessment. Further analysis explored personal and home environment factors in relation to caregiver appraisal. The Kruskal-Wallis test showed cognitive status in the person with dementia (H (2, N = 85) = 3.67, p = .16) and caregiver depressive symptoms (H (2, N = 86) = 1.35, p = .51) were not associated with the caregiver’s appraisal of functional capacity in the person with dementia. Linear regression and proportional odds logistic regression, adjusted for cognitive status in the person with dementia, did not reveal a relationship between caregiver appraisal and the number of observed home hazards [F (1, N = 86) = .01, p = .94] or the unmet needs reported by the caregiver [Wald χ2 (1, N = 86) = .95, p = .33], respectively. Linear regression showed a trend towards the hypothesis that caregiver concordant/underestimation of functional capacity have greater home adaptations compared to caregiver overestimation [F (1, N = 86) = 3.06, p = .08]. The papers in totality demonstrate the utility of the FCCS to assess caregiver appraisal and interpret level of estimation, which can guide the therapeutic approach and treatment plan by an occupational therapist or other health professional. Further understanding of caregiver appraisal and associated factors is critical to providing best practice in dementia care. Limitations and future directions for research are discussed.

This research explored the social and psychological needs of caregivers of advanced cancer patients, and their subsequent bereavement adjustment. The study focuses exclusively on informal caregivers who provide assistance to patients receiving hospice care for end-stage cancer. Those individuals living furthest from the dying care recipient, the long distance caregivers, were of particular interest. This study used a prospective design to explore how a caregiver's geographic proximity impacted their social support and bereavement adjustment. A 2 x 3 repeated measures design was used to gather data from caregivers before a patient's death (using a pre-death questionnaire) as well as after the death (by post-death questionnaire). This design allowed for an examination of differences between three groups of caregivers over time: long distance caregivers (who live an hour or more from the care recipient), proximate caregivers (who live less than an hour away) and co-residing caregivers. One hundred and six (N = 106) caregivers were recruited to participate from Covenant Hospice, a large Gulf Coast-based palliative care organization. Validated instruments were used to measure levels of social support and bereavement adjustment. A repeated measures MANCOVA procedure explored the impact of geographic proximity on measures of social support and adjustment. Results did not support the proposed multivariate model. However, quality of dying (as measured by the QOD-Hospice) was identified as an influential between-groups covariate within the model. Further exploration of the QOD-Hospice revealed a negative correlation with levels of emotional grief, and positive correlations with length of stay in hospice, and pre-loss and post-loss levels of social support. Overall results seem to suggest that timely referrals to hospice, improvements in care for the dying, and increased attention to quality of dying, may have a beneficial impact for survivors during bereavement. Furthermore, findings from this study suggest that the quality of a person's final days may play an important role in how the surviving caregivers adjust to the loss. Not only can high quality end-of-life care benefit dying patients, but it may also facilitate bereavement adjustment for those who participated in their care network. However, findings were limited and further investigation of these relationships is warranted.

The purpose of this study was to understand the decision making process of caregivers placing their elderly family members in a nursing home facility. Experiential Learning Theory (ELT) was used, as well as the Critical Incident Technique (CIT). ELT was utilized in an effort to understand the learning that took place during the caregiving experiences, and CIT was used to better understand the critical incidents that led the caregivers to seek nursing home placement. A sample of twelve former informal dementia caregivers between the ages of fifty-seven and eighty-seven was drawn from the metropolitan Richmond, Virginia area. In-depth interviews were audiotaped and provided the primary source of data for this study. An interview protocol consisting of eleven open-ended questions derived from current dementia caregiving literature guided the conversation between the researcher and the caregivers in the sample. A constant comparison method was used in this study. The findings revealed that there are a variety of reasons why informal dementia caregivers seek nursing home placement for their family members. Themes related to the decision making process to seek nursing home placement include (1) dementia related behaviors, (2) safety concerns, (3) emotional and psychological burden, and (4) unexpected medical intervention. Indicators of each theme found in this study suggest that providing informal care for an individual with dementia can be very overwhelming and challenging. Although there were some positive aspects associated with this form of caregiving, such as feelings of pride and self-worth, the overall consensus from this study was that dementia caregiving is a very difficult experience in which the primary caregiver had to ultimately seek formal placement in a nursing home for their family member for a variety of reasons.