Advances in surgical technique and medical management have led to fundamental changes in surgical care allowing for a paradigm shift from inpatient to outpatient surgery. Enhanced recovery pathways have moved surgical recovery from inpatient to outpatient settings requiring informal caregiver support. The purpose of this study was to determine the prevalence of caregiver burden in this patient population and to explore whether caregiver burden contributes to preventable use of emergency room services. The conceptual framework supporting this retrospective cross-sectional study was Andersen's behavioral model of health services utilization. Data collected from 28 urologic patient/caregiver pairs were analyzed using descriptive statistics and linear and logistic regression. Findings indicated measurable caregiver burden in 2 of the 5 Caregiver Reaction Assessment (CRA) subscales: impact on schedule and impact on health. Findings also indicated a measurable protective effect of high socioeconomic status of caregivers and the CRA subscale of impact on finances, and a possible protective effect of caregiver self-esteem as measured by the CRA subscale and emergency room utilization within the first 30 days after enhanced recovery surgery. Social change implications include improving the surgical experience of patients and caregivers and enhancing the use of health care resources.

Objective: To examine whether caregiver burden, parenting style, and sibling relationships in families raising a child with a disability (CWD) predict cooperative and externalizing behaviors in typically-developing sibling (TDS). Methods: This correlational study included 189 families raising both a CWD and a TDS. Mothers and fathers completed self-report questionnaires on caregiver burden, sibling relationships, parenting style, and TDS cooperative and externalizing behaviors. Results: Authoritative parenting was positively associated with cooperative behaviors, whereas authoritarian parenting was positively associated with externalizing behaviors. Hierarchical regression revealed caregiver burden was a significant predictor of cooperative and externalizing behaviors; however, when parenting style was added as a predictor, it was also significant. However, when sibling relationships were added as a predictor, they were the only consistently significant predictor for both cooperative and externalizing TDS behaviors; caregiver burden was no longer significant and parenting style was only significant in predicting externalizing behaviors. Conclusion: Positive sibling relationships may help negate the effects of caregiver burden and poor parenting practices on sibling outcomes. Therefore, interventions improving parenting and sibling relationships are critical in families raising a CWD.

Stroke is the leading cause of long-term disability in the United States and often leaves individuals with physical and cognitive deficits. Stroke survivors are discharging to the home environment in increasing numbers rather than entering a long-term care facility. Family caregivers are needed to provide assistance for engagement in ADL, IADL, communication, and mobility tasks due to the residual deficits resulting from the stroke. Research indicates that caregivers are not adequately prepared in the inpatient setting to assume their new role and are therefore at risk for negative health outcomes and caregiver burnout. This doctoral project intends to address the need in the inpatient setting for proper and adequate caregiver education and training prior to a patient’s discharge home. The Post-Stroke Discharge Planning Toolkit and the caregiver perceived readiness questionnaire will address this need. Specifically, the toolkit will target education on stroke risk factors and complications; eating including swallowing, nutrition, hydration, PEG tube education; bowel and bladder care; positioning; caregiver self-care; supportive problem solving; facilitating of functional transfers, mobility, handling, and lifting; facilitating activities of daily living; communication; psychological aspects of caregiving; and referral services. The questionnaire will help identify gaps in knowledge faced by caregivers and serve as a planning tool and outcomes tool for intervention and evaluation. Ideally, through the use of the Post-Stroke Discharge Planning Toolkit, difficulty with discharge planning and negative health outcome risks associated with assuming the caregiver role can be mitigated or stopped prior to onset. The Post Stroke Discharge Planning Toolkit will be available in print and online.

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Il presente elaborato si colloca entro l’area di ricerca sull’invecchiamento patologico, con particolare riferimento al paziente con diagnosi di demenza moderata e grave e al relativo caregiver; tema centrale è la qualità della vita dei due membri della diade paziente/familiare, e la necessità di diversificare e arricchire l’attività psicologica entro i contesti di ricovero a lungo termine in favore di un miglioramento del benessere della diade stessa. A tale scopo, il lavoro si articola in due studi distinti: nel primo, si propone un intervento di stimolazione musicale individualizzata diretta al paziente con diagnosi di demenza moderata o grave, nel secondo un intervento di reminiscenza che ha come target il familiare. La tesi si articola in tre sezioni: la prima è una cornice teorica di riferimento, la seconda e la terza espongono rispettivamente il primo e il secondo studio sperimentale. Il primo capitolo ha lo scopo di fornire un quadro teorico e empirico aggiornato in merito al tema dell’invecchiamento. Inizialmente viene trattata la questione della “Ageing Society” da un punto di vista globale, delineando nel corso del capitolo le caratteristiche e le criticità legate all’invecchiamento patologico e alla sua gestione entro il Sistema Sanitario Nazionale, con particolare interesse verso la realtà delle Residenze Sanitario-Assistenziali (RSA), contesto entro il quale si sono svolti i due lavori di ricerca proposti. Si tocca infine il tema dell’intervento non farmacologico diretto al paziente. In una seconda parte è descritta la prospettiva del familiare, il concetto di burden e il ruolo della relazione pregressa tra paziente e caregiver da un punto di vista teorico; segue la descrizione degli interventi non farmacologici diretti al caregiver finora proposti in letteratura, ideati allo scopo di alleviare stress legato al ruolo di cura e alle sue implicazioni. Il secondo capitolo ha lo scopo di esporre il primo studio della tesi, che si è occupato di verificare l’efficacia di un intervento di ascolto musicale individualizzato sulla qualità della vita di pazienti con diagnosi di demenza moderata o grave. Per questo motivo, si sono prima di tutto descritti i sintomi comportamentali della demenza, con particolare riferimento alla agitazione psicomotoria e al suo ruolo di indice dello stato psicologico del paziente con deficit cognitivi avanzati. Nella sezione empirica del capitolo viene descritta nei dettagli la modalità di intervento selezionata, gli obiettivi dello studio e i risultati ottenuti in base alla misurazione pre-post delle variabili di outcome selezionate e al confronto tra gruppo sperimentale e gruppo di controllo. Il terzo capitolo tratta il secondo studio del lavoro di tesi, che ha indagato l’efficacia di un intervento di reminiscenza sulla qualità della vita percepita dai familiari di pazienti con diagnosi di demenza afferenti alla RSA Monsignor Bicchierai – Istituto Auxologico Italiano di Milano. Allo scopo di motivare le ragioni della scelta di questa modalità di intervento, si sono descritte le premesse teoriche della teoria della reminiscenza e le sue potenzialità come forma di approccio al paziente anziano; l’idea dello studio è stata quella di applicare tale modalità di intervento sul caregiver, allo scopo di alleviare il burden percepito conseguente al carico pratico e emotivo che la cura della persona cara comporta. Analogamente al secondo capitolo, segue la sezione empirica dello studio, con un esteso approfondimento metodologico e la descrizione e discussione dei risultati ottenuti. Una sezione finale avrà lo scopo di proporre riflessioni e spunti clinici emersi da entrambi gli studi, entro una visione globale della presa in carico della diade paziente/caregiver. / This research thesis refers to pathological aging, with a particular focus on the patient with a diagnosis of dementia and his/her caregiver. The intended central theme is the patient and the caregiver’s quality of life, assuming them as a dyad; the work also concentrated on the need to diversify and enrich the psychological offer within the context of long-term hospitalization. To this end, it is divided into two separate studies. In the first one, we propose an individualized musical intervention directed to the patient with a diagnosis of moderate or severe dementia; in the second the effcacy of a reminiscence intervention that targets the family member is tested. The thesis consists of three separate sections: the first is a theoretical frame, the second and the third expose the first and the second experimental study respectively. The first chapter aims at providing an updated theoretical and empirical framework on the subject of aging. The problem of the "Aging Society" is firstly discussed; among the chapter the characteristics and the critical issues related to pathological aging and its management are debated. This topic requested a deepening into the features of the italian National Health System, with a particular focus on the reality of Nursing Homes (RSA), within which the two proposed research works were carried out. Finally, the topic of non-pharmacological intervention directed to the patient is treated. The second part describes the caregivers’ perspective, the concept of burden and the role of the prior relationship between patient and caregiver: in order to act on the stress related to the role of care and its implications, non-pharmacological interventions directed to the caregiver according to scientific literature are described. The second chapter objective is to display the first study, which aimed at testing the effectiveness of an individualized music listening intervention on the quality of life of patients diagnosed with moderate or severe dementia. For this reason, the behavioral symptoms of dementia (BPSD) were first described, with particular reference to agitation and its role as an index of the psychological state of the patient with advanced cognitive impairment. In the empirical section of the chapter the intervention is carefully described, together with the objectives of the study and the results obtained based on the pre-post measurement of the selected outcome variables and the comparison between the experimental group and the control group. The third chapter deals with the second study of the thesis work, which investigated the effectiveness of a reminiscence intervention on the caregivers’ perceived quality of life; they belonged to the RSA Monsignor Bicchierai - Italian Auxologic Institute of Milan. In order to support the choice of this modality of intervention, the theoretical premises and its potential use as a form of treatment for dementia patients have been described; the seminal idea of the study was to apply this kind of intervention on the caregiver, in order to relieve the burden resulting from the practical and emotional load requested. Similarly to the second chapter, the empirical section of the study follows, with an extensive methodological study together with a description of the obtained results. A final section had the purpose to think over the clinical ideas emerged from both studies, viewing the dyad patient-caregiver as a single care recipient.

Parkinson’s Disease (PD) is a common progressive neurodegenerative disorder that leads to both physical and cognitive impairment over time. Eventually, these impairments may include the loss of autonomy, and the individual may require the assistance of an informal caregiver. Informal caregivers are critical in the care of individuals with PD and spend substantial time providing care, which may be associated with negative caregiver outcomes such as burden, mental health issues, as well as poor family dynamics. Although research in the United States and Europe has generally supported these relations, there is very limited research on PD caregiving in Latin America. Given the rapidly aging population of Latin America, research suggests that the prevalence of PD is likely to increase substantially. Although cultural values such as familism may encourage informal caregiving in Latin America, very little is known about either PD patient or caregiver experiences in the region and how they may differ from those in the United States and Europe. As such, the current study built upon Pearlin’s caregiving stress process model to examine how PD-related impairments, caregiver burden and mental health, and family dynamics may differ between the United States and Mexico and to examine connections among the following variables in a sample of PD caregivers from the United States and Mexico: (a) PD-related impairments (motor and non-motor symptoms) and caregiver burden, (b) caregiver burden and caregiver mental health, (c) PD-related impairments and mental health through caregiver burden, and (d) family dynamics which may moderate these relations. The current study consisted of caregivers of individuals with PD (total N = 253) from the United States (N = 105) and Mexico (N = 148). A series of t-tests and mediational models were conducted to determine the connections among PD-related impairments, caregiver burden and mental health, and family dynamics. Results suggested that caregivers from the United States site experienced higher levels of caregiver burden, although there were no significant differences in caregiver mental health. Further, caregiver burden fully mediated the relation between PD-related impairments and caregiver mental health at both study sites, although family dynamics did not moderate these mediational models as hypothesized. Despite the importance of cultural values such as familism in Latin America, family dynamics explained more variance in the model at the United States site than at the Mexico site. Exploratory analyses found that caregivers from the Mexico site more frequently reported suicidal and self-injurious thoughts but did not find a significant disparity in self-reported gender of the caregiver. Overall, the current study identified significant relations among PD-related impairments, caregiver burden and mental health, and family dynamics among caregivers of individuals with PD from the United States and Mexico. Findings from the current study highlight a number of important interventions for caregivers and families, including caregiver burden and mental health, as well as family dynamics.

BACKGROUND: Literature suggests that many palliative home care patients wish to die at home. This study investigated determinants of caregiver burden among palliative home care patients, with particular interest in its relationship with place-of-death. Previous research has examined how patient care, health conditions, and characteristics of informal support relate to caregiver burden or place of death in palliative home care. However, none of the existing literature has focused on the role of caregiver burden on place of death or congruency between the patients’ preferred vs. actual place of death. It seems likely that, in light of the high dependence on informal care during the last days of life, that caregiver burden plays a significant role in place of death. A number of factors may contribute to the incongruence between preferred versus actual place of death. For example, informal caregivers may lack the necessary skills and/or knowledge to provide adequate care to terminally ill loved ones. They may also be unable to cope with the type of care required by his or her loved one. Longitudinal studies indicating increasing home death rates among palliative home care patients. Research attributed the increased rate of home death to expanding home care programs rather than improving home care services. The goal of this study was to provide home care agencies the means to increase rates of home death among home care patients who wish to die at home by better directing existing types of services to lessen caregiver burden and improving congruency between preferred versus actual place-of-death. OBJECTIVES: The aim of the research was four fold. First, it validated the caregiver burden items in the interRAI Palliative Care (interRAI PC) with self-report caregiver scales. The second section examined the determinants of caregiver burden. The third section examined the determinants of place of death and congruency between preferred vs. actual place-of-death. The final section examined the role of caregiver burden and place-of-death. METHODS: This was a prospective cross-sectional study that employed the Caregiver Burden Scale, the Burden Inventory, and the interRAI PC tool. The sample included all palliative home care patients and their caregivers who received formal care from one Ontario community care access centre. Health information was collected by case managers during regular assessment intervals. RESULTS: The three interRAI PC items measuring caregiver burden are an adequate measure of subjective stress burden. The sum of these items can be used to construct a caregiver burden scale. Determinants of caregiver burden were limited to unstable health and higher levels of self-reported depression, anxiety, and anhedonia. Patients who preferred to die at home were more likely to suffer IADL impairment, but not ADL impairment, and they were more likely to have completed a do-not-hospitalize order or do-not-resuscitate order. Patients whose caregiver was not a spouse or child relative were less likely to prefer home death. Further analyses showed a high level of agreement between preferred versus actual place of death. Overall, 57% of patients died at home, 68% of those patients who wished to die at home had managed to do so. Determinants that increased the likelihood of home death included completion of a do-not-hospitalize order, preference to die at home, and excessive sleep. However, the presence of a caregiver who was unable to continue providing care decreased the likelihood of home death. CONCLUSION: The purpose of this study was to examine the role of caregiver burden in place of death among recipients of palliative home care. Studies such as this are important to the patients, caregivers, and the agencies that provide home care. Results of this study confirm many of the determinants of home death reported by earlier research. It is unique in that it identifies the caregiver’s ability to continue providing care as an important determinant of home death. These results support that notion that the needs of the caregiver should also be examined when determining the needs of the patient and that the patient and caregiver should be considered a unit of care. It also illustrates the important role of advanced directives, more specifically do-not-hospitalize orders, among patients receiving palliative home care.

BACKGROUND: Literature suggests that many palliative home care patients wish to die at home. This study investigated determinants of caregiver burden among palliative home care patients, with particular interest in its relationship with place-of-death. Previous research has examined how patient care, health conditions, and characteristics of informal support relate to caregiver burden or place of death in palliative home care. However, none of the existing literature has focused on the role of caregiver burden on place of death or congruency between the patients’ preferred vs. actual place of death. It seems likely that, in light of the high dependence on informal care during the last days of life, that caregiver burden plays a significant role in place of death. A number of factors may contribute to the incongruence between preferred versus actual place of death. For example, informal caregivers may lack the necessary skills and/or knowledge to provide adequate care to terminally ill loved ones. They may also be unable to cope with the type of care required by his or her loved one. Longitudinal studies indicating increasing home death rates among palliative home care patients. Research attributed the increased rate of home death to expanding home care programs rather than improving home care services. The goal of this study was to provide home care agencies the means to increase rates of home death among home care patients who wish to die at home by better directing existing types of services to lessen caregiver burden and improving congruency between preferred versus actual place-of-death. OBJECTIVES: The aim of the research was four fold. First, it validated the caregiver burden items in the interRAI Palliative Care (interRAI PC) with self-report caregiver scales. The second section examined the determinants of caregiver burden. The third section examined the determinants of place of death and congruency between preferred vs. actual place-of-death. The final section examined the role of caregiver burden and place-of-death. METHODS: This was a prospective cross-sectional study that employed the Caregiver Burden Scale, the Burden Inventory, and the interRAI PC tool. The sample included all palliative home care patients and their caregivers who received formal care from one Ontario community care access centre. Health information was collected by case managers during regular assessment intervals. RESULTS: The three interRAI PC items measuring caregiver burden are an adequate measure of subjective stress burden. The sum of these items can be used to construct a caregiver burden scale. Determinants of caregiver burden were limited to unstable health and higher levels of self-reported depression, anxiety, and anhedonia. Patients who preferred to die at home were more likely to suffer IADL impairment, but not ADL impairment, and they were more likely to have completed a do-not-hospitalize order or do-not-resuscitate order. Patients whose caregiver was not a spouse or child relative were less likely to prefer home death. Further analyses showed a high level of agreement between preferred versus actual place of death. Overall, 57% of patients died at home, 68% of those patients who wished to die at home had managed to do so. Determinants that increased the likelihood of home death included completion of a do-not-hospitalize order, preference to die at home, and excessive sleep. However, the presence of a caregiver who was unable to continue providing care decreased the likelihood of home death. CONCLUSION: The purpose of this study was to examine the role of caregiver burden in place of death among recipients of palliative home care. Studies such as this are important to the patients, caregivers, and the agencies that provide home care. Results of this study confirm many of the determinants of home death reported by earlier research. It is unique in that it identifies the caregiver’s ability to continue providing care as an important determinant of home death. These results support that notion that the needs of the caregiver should also be examined when determining the needs of the patient and that the patient and caregiver should be considered a unit of care. It also illustrates the important role of advanced directives, more specifically do-not-hospitalize orders, among patients receiving palliative home care.