Indiana University-Purdue University Indianapolis (IUPUI) / The number of patients with chronic heart failure (HF) is at an all-time high and the incidence is expected to increase as our population ages. HF patients experience impaired cognition, exertional shortness of breath, and persistent fatigue; therefore, family members are needed to assist with their care at home. Although existing literature suggests that HF caregivers experience negative physical, mental, and social outcomes, there is a lack of studies guided by a conceptual model to determine factors associated with these outcomes. The purpose of this study was to determine factors associated with HF caregiver depressive symptoms, life changes, and quality of life guided by a conceptual model derived from Lazarus and colleagues’ transactional approach to stress. Psychometric properties of a new HF caregiver-specific quality of life (HFCQL) scale were also determined. Using a descriptive design, a convenience sample of 100 HF caregivers was interviewed by telephone using established measures along with the new HFCQL scale. The 16-item HFCQL scale, which measures physical, psychological, social, and spiritual well-being demonstrated evidence of internal consistency reliability (alpha = .89); 2-week test-retest reliability (ICC = .83); construct validity, as evaluated with factor analysis (loadings > .32) and hierarchical multiple regression (59% variance, p < .001); and criterion validity, as shown with significant (p < .001) correlations with the Bakas Caregiving Outcomes Scale (r = .73), SF-36 general and mental health (r = .45; .59), and a single overall QOL item (r = .71). Using hierarchical multiple regression, the model constructs accounted for 35% variance of depressive symptoms, 46% variance of life changes, and 59% variance of HFCQL (p < .001). Factors significantly associated with these outcomes included caregiving task difficulty, uncertainty, social support, and threat appraisal. Support for the conceptual model was provided, and potential areas for intervention development were identified. The new HFCQL scale showed potential as a quality outcome measure in HF caregivers, and might be used to screen HF caregivers for poor quality of life. Further research using the proposed conceptual model and the HFCQL scale is warranted. Tamilyn Bakas, DNS, RN, Chair

Alzheimer's disease (AD) is a progressive, degenerative disorder that attacks the brain's nerve cells, or neurons, resulting in loss of memory, thinking and language skills, and results in behavioral changes and lack of communication. Family members and caregivers of persons with Alzheimer’s disease can assume added responsibilities and stress due to the progressive and degenerative component of this disability and places an added strain on the family system. This study was designed to examine predictors of quality of life of persons living with AD and to examine caregiver burden and predictors of quality of life of persons living with AD. This study hopes to empower the caregivers and test the resiliency model of family stress, sense of coherence and social support while incorporating individual patient and family needs by surveying caregivers involved with working with patients with AD. Specific aims of the study include validating relationships of the resiliency model while determining the importance of family resiliency, the sense of coherence, social support and the role of psychosocial interventions specifically Validation Communication Intervention (VCI), to reduce caregiver burden and to predict the quality of life in persons with Alzheimer’s disease. / Includes bibliography. / Dissertation (Ph.D.)--Florida Atlantic University, 2014. / FAU Electronic Theses and Dissertations Collection

Resumo Este estudo descritivo, de natureza qualitativa, visou reconhecer atitudes observadas no comportamento de pais/mães cuidadores de crianças portadoras de anemia falciforme, doença crônica relevante no continente africano, identificar aspectos relacionados à dinâmica familiar, caracterizar vivências depressivas, ansiógenas e de estresse desse grupo, no Hospital Pediátrico David Bernardino, em Luanda, Angola. A população de estudo compreendeu 25 participantes 08 pais, na faixa etária de 25 50 anos, e 17 mães, com idades entre 25 e 50 anos. Para obtenção dos dados, entrevistas foram realizadas, seguindo um roteiro temático, acompanhadas de aplicação de testes para aquilatar depressão, ansiedade e estresse na população de estudo. Para isso, contou com aprovação do Comitê de Ética em pesquisa, da Faculdade de Saúde Pública-USP, autorização da direção do Hospital, e anuência dos participantes, de acordo com os termos do TCLE. Os conteúdos das entrevistas gravadas foram transcritos, organizados em quadros, e analisados segundo a técnica do Discurso do Sujeito Coletivo. Os dados dos testes aplicados, também, são apresentados em quadros e analisados conforme a metodologia seguida. Achados revelaram que, praticamente todos os integrantes deste estudo apresentavam sintomas de depressão, ansiedade e estresse, em diferentes níveis, destacando-se o nível moderado, porém com presença de casos graves em todos eles. Este quadro foi compreendido como resultado de sofrimento vivenciado em todo o processo de adoecimento da criança, desde a descoberta de sintomas, a peregrinação por serviços de saúde para diagnóstico e tratamento especializados em face da falta de qualificação de profissionais e de hospitais para atenção a portadores de anemia falciforme - e da persistência de crises, até a chegada ao único hospital de referência nacional. Em considerações finais, ressalta-se que vivências de pais/mães cuidadores de crianças portadoras de anemia falciforme devem ser consideradas em qualquer plano de enfrentamento do problema, uma vez que a doença de seus filhos interfere, diretamente, em sua vida cotidiana e de trabalho. Outra recomendação diz respeito à necessidade de promoção e ampliação da rede especializada, em nível nacional, para redução da demanda que se registra no único hospital pediátrico, em Luanda, ao de melhor qualificação de profissionais de saúde para sua abordagem. / This descriptive study, applying qualitative methods, sought to recognize the attitudes and symptoms observed in the behavior of parents nurturing children suffering sickle, as well as understand the aspects linked to family Dynamics, characterize the depressive, angiogenesis living and stress situations of this group in pediatric hospital, David Bernardino in Luanda, Angola. The population of the study is made of 25 participants, being 08 fathers whose ages fall between 25-50 years, and 17 mothers whose ages fall between 25 50 years. To gather the data, interviews were done following the interview protocol. Testing was also applied to measure the depression, anxiety and stress on the target population of the study. Thus, the study held an approval from the ethics and research committee of the school of public health USP as well as the permission of the hospital administration board and the consent of the participants as described in the terms of TCLE. The content of the interviews recorded were transcribed and organized in tables, and it was analyzed following the technique of the discourse of collective subjects. The data of the tests applied are also presented in tables and analyzed following the applied methodology. The results revealed that almost all the participants of the study symptoms of depression, anxiety and stress at different levels, emphasizing the moderate level, though with the presence of grave cases in all three; this reality witnessed was understood as the result of the suffering lived in all process of the child illness, since the display of the symptoms, the ups and downs in health care institutions to seek for diagnostic and care due to the shortage of qualified professionals and hospitals to care for sickle carriers and the continuous crises until reaching the unique hospital of reference in the country; added to this all other consequences for the family life. As final words, it is highlighted that the life experience of parents nurturing children carriers of sickle is an important phenomenon to be taken into account in dealing with the problem, since their childrens sickle interferes, directly, in their daily life and work. Another recommendation is related to the need of promoting and extending the network of this sickle health care service countrywide to reduce the high number of people who run to the unique pediatric hospital in Luanda, as well as train more people to deal with the demands of the disease.

Resumo Este estudo descritivo, de natureza qualitativa, visou reconhecer atitudes observadas no comportamento de pais/mães cuidadores de crianças portadoras de anemia falciforme, doença crônica relevante no continente africano, identificar aspectos relacionados à dinâmica familiar, caracterizar vivências depressivas, ansiógenas e de estresse desse grupo, no Hospital Pediátrico David Bernardino, em Luanda, Angola. A população de estudo compreendeu 25 participantes 08 pais, na faixa etária de 25 50 anos, e 17 mães, com idades entre 25 e 50 anos. Para obtenção dos dados, entrevistas foram realizadas, seguindo um roteiro temático, acompanhadas de aplicação de testes para aquilatar depressão, ansiedade e estresse na população de estudo. Para isso, contou com aprovação do Comitê de Ética em pesquisa, da Faculdade de Saúde Pública-USP, autorização da direção do Hospital, e anuência dos participantes, de acordo com os termos do TCLE. Os conteúdos das entrevistas gravadas foram transcritos, organizados em quadros, e analisados segundo a técnica do Discurso do Sujeito Coletivo. Os dados dos testes aplicados, também, são apresentados em quadros e analisados conforme a metodologia seguida. Achados revelaram que, praticamente todos os integrantes deste estudo apresentavam sintomas de depressão, ansiedade e estresse, em diferentes níveis, destacando-se o nível moderado, porém com presença de casos graves em todos eles. Este quadro foi compreendido como resultado de sofrimento vivenciado em todo o processo de adoecimento da criança, desde a descoberta de sintomas, a peregrinação por serviços de saúde para diagnóstico e tratamento especializados em face da falta de qualificação de profissionais e de hospitais para atenção a portadores de anemia falciforme - e da persistência de crises, até a chegada ao único hospital de referência nacional. Em considerações finais, ressalta-se que vivências de pais/mães cuidadores de crianças portadoras de anemia falciforme devem ser consideradas em qualquer plano de enfrentamento do problema, uma vez que a doença de seus filhos interfere, diretamente, em sua vida cotidiana e de trabalho. Outra recomendação diz respeito à necessidade de promoção e ampliação da rede especializada, em nível nacional, para redução da demanda que se registra no único hospital pediátrico, em Luanda, ao de melhor qualificação de profissionais de saúde para sua abordagem. / This descriptive study, applying qualitative methods, sought to recognize the attitudes and symptoms observed in the behavior of parents nurturing children suffering sickle, as well as understand the aspects linked to family Dynamics, characterize the depressive, angiogenesis living and stress situations of this group in pediatric hospital, David Bernardino in Luanda, Angola. The population of the study is made of 25 participants, being 08 fathers whose ages fall between 25-50 years, and 17 mothers whose ages fall between 25 50 years. To gather the data, interviews were done following the interview protocol. Testing was also applied to measure the depression, anxiety and stress on the target population of the study. Thus, the study held an approval from the ethics and research committee of the school of public health USP as well as the permission of the hospital administration board and the consent of the participants as described in the terms of TCLE. The content of the interviews recorded were transcribed and organized in tables, and it was analyzed following the technique of the discourse of collective subjects. The data of the tests applied are also presented in tables and analyzed following the applied methodology. The results revealed that almost all the participants of the study symptoms of depression, anxiety and stress at different levels, emphasizing the moderate level, though with the presence of grave cases in all three; this reality witnessed was understood as the result of the suffering lived in all process of the child illness, since the display of the symptoms, the ups and downs in health care institutions to seek for diagnostic and care due to the shortage of qualified professionals and hospitals to care for sickle carriers and the continuous crises until reaching the unique hospital of reference in the country; added to this all other consequences for the family life. As final words, it is highlighted that the life experience of parents nurturing children carriers of sickle is an important phenomenon to be taken into account in dealing with the problem, since their childrens sickle interferes, directly, in their daily life and work. Another recommendation is related to the need of promoting and extending the network of this sickle health care service countrywide to reduce the high number of people who run to the unique pediatric hospital in Luanda, as well as train more people to deal with the demands of the disease.

O objetivo desta pesquisa foi investigar as percepções dos cuidadores informais de pacientes de um serviço de assistência domiciliar sobre o cuidar e seu impacto, estudando aspectos positivos e negativos associados a este papel e a influência da assistência domiciliar para o seu desempenho. Participaram 50 cuidadores de pacientes inscritos no NADI Hospital das Clínicas da FMUSP, que responderam uma entrevista semi-dirigida e a Caregiver Burden Scale. Os cuidadores referem aspectos positivos dos cuidados, associados ao aprendizado e ao ganho narcísico, bem como aspectos negativos, como a perda de liberdade. Conclui-se que cuidar traz perdas e ganhos ao cuidador, relacionados ao seu envolvimento com a atividade e que as orientações da equipe são importantes para o sentimento de segurança do mesmo / The objective of this research was to investigate the perception of informal caregivers of patients attended by a home care program, about the care and its impact, studying positive and negative aspects associated with this role and the influence of home care and its development. Fifty caregivers of patients registered at NADI Hospital das Clínicas of FMUSP, participated in the study, answering the questions of a semi-structured interview and the Caregiver Burden Scale. Caregivers refer to positive aspects of caring related to learning and narcisistic gains, as well as to negative ones, such as the loss of freedom. It includes that caring brings losses and gains to the caregiver which are related to his involvment with the activity and that the staff´s orientation is very important for their feeling of security

by Ho Yuk Mei. / Thesis (M.S.W.)--Chinese University of Hong Kong, 1995. / Includes bibliographical references (leaves 107-113). / Acknowledgements / Abstract / Chapter Chapter I --- Introduction --- p.1 / Chapter Chapter II --- Family Caregiving of Elderly in Hong Kong --- p.5 / Chapter 1 --- Characteristics and Needs of Elderly Population in Hong Kong --- p.5 / Chapter 2 --- Social Services for the Elderly in Hong Kong --- p.8 / Chapter 3 --- Family Caregiving in Hong Kong --- p.11 / Chapter 4 --- Local Researches on Family Caregivers of Frail Elderly --- p.13 / Chapter Chapter III --- Literature Review on Family Caregivers of Frail Elderly --- p.18 / Chapter 1 --- Elderly --- p.18 / Chapter 2 --- Frail Elderly --- p.19 / Chapter 3 --- Family Caregivers of Frail Elderly --- p.22 / Chapter 4 --- Caregiving as a Stressful Experience --- p.25 / Chapter 5 --- Stress and Coping Model --- p.29 / Chapter Chapter IV --- Conceptual Framework of Stress and Coping Strategies of Family Caregivers of Frail Elderly --- p.40 / Chapter 1 --- Definitions of Major Variables --- p.40 / Chapter 2 --- Interrelationships of Major Variables (Hypotheses) --- p.43 / Chapter Chapter V --- Research Methodology --- p.46 / Chapter 1 --- Sampling --- p.46 / Chapter 2 --- Measuring Instruments --- p.48 / Chapter 3 --- Data Collection Procedure --- p.56 / Chapter 4 --- Data Analysis --- p.57 / Chapter Chapter VI --- Findings on the Characteristics of Family Caregivers and their Frail Elderly Relatives --- p.58 / Chapter 1 --- Characteristics of Family Caregivers --- p.58 / Chapter 2 --- Characteristics of the Frail Elderly --- p.67 / Chapter Chapter VII --- "Findings on Level and Areas of Family Caregiving, Stress, Appraisal, Coping Strategies and Life Satisfaction of Family Caregivers" --- p.78 / Chapter 1 --- Level and Areas of Family Caregiving of Frail Elderly --- p.78 / Chapter 2 --- Level of Stress of Family Caregivers --- p.81 / Chapter 3 --- Appraisal of Caregiving Situation by Family Caregivers --- p.82 / Chapter 4 --- Coping Strategies of Family Caregivers --- p.85 / Chapter 5 --- Level of Life Satisfaction of Family Caregivers --- p.89 / Chapter Chapter VIII --- Findings on Hypotheses Testing --- p.91 / Chapter Chapter IX --- Summary and Limitations --- p.95 / Chapter Chapter X --- Recommendations --- p.101 / Bibliography --- p.107 / Appendix 1 Eligibility Criteria of Day Care Centre for the Elderly --- p.114 / Appendix 2 Eligibility Criteria of Elderly Cases of Home Help Service --- p.115 / Appendix 3 Description of the Coping Scale --- p.116 / Appendix 4 Questionnaire (Chinese Version) --- p.117 / Appendix 5 Questionnaire (English Version) --- p.131 / Appendix 6 Percentage of Responses to the Items in the Ways of Coping Questionnaire --- p.147

O objetivo desta pesquisa foi investigar as percepções dos cuidadores informais de pacientes de um serviço de assistência domiciliar sobre o cuidar e seu impacto, estudando aspectos positivos e negativos associados a este papel e a influência da assistência domiciliar para o seu desempenho. Participaram 50 cuidadores de pacientes inscritos no NADI Hospital das Clínicas da FMUSP, que responderam uma entrevista semi-dirigida e a Caregiver Burden Scale. Os cuidadores referem aspectos positivos dos cuidados, associados ao aprendizado e ao ganho narcísico, bem como aspectos negativos, como a perda de liberdade. Conclui-se que cuidar traz perdas e ganhos ao cuidador, relacionados ao seu envolvimento com a atividade e que as orientações da equipe são importantes para o sentimento de segurança do mesmo / The objective of this research was to investigate the perception of informal caregivers of patients attended by a home care program, about the care and its impact, studying positive and negative aspects associated with this role and the influence of home care and its development. Fifty caregivers of patients registered at NADI Hospital das Clínicas of FMUSP, participated in the study, answering the questions of a semi-structured interview and the Caregiver Burden Scale. Caregivers refer to positive aspects of caring related to learning and narcisistic gains, as well as to negative ones, such as the loss of freedom. It includes that caring brings losses and gains to the caregiver which are related to his involvment with the activity and that the staff´s orientation is very important for their feeling of security

As part of an effort to understand psychological consequences among family members of patients sustaining a traumatic injury, medical research has turned to the role of resilience – or the ability to bounce back from and maintain psychological well-being in the wake of an adverse event— in mitigating the potential distress (i.e., depression and burden) of caregiving (Bonanno, 2004; Roberson et al., under review). This study sought to examine the ability for trait-resilience to predict trajectories of distress over the course of a year among 124 family members and loved ones of patients admitted to a Level I Trauma Center. A cross-lagged path model examining resilience, burden, and depression at baseline, 3, 6, and 12 months after injury showed that, while depression strongly predicted later burden, resilience was not a significant predictor of either outcome in the model. When depression and burden were subjected to a person-centered analysis (i.e., latent growth curve analysis), two major classes were identified: caregivers with high, chronic distress (33% of the sample) and low-moderate distress that declined over time. A three-class solution for caregiver burden further identified a moderate, increasing trajectory class. Predictive discriminant analyses revealed that trait-resilience was a major differentiating trait between class membership (rs = .23 for depression; rs = .32 for burden); further, presence of PTSD symptoms at baseline, gender, and history of depression were shown to be strong factors in distinguishing class membership across both outcomes. This study helps shed insight into the well-being of caregivers in the wake of a loved one's traumatic injury, in addition to possible identifying risk factors while patients are still admitted in the ICU. Lastly, the study provides alternatives for analyses that focus on longitudinal outcomes, particularly person- vs. variable-centered solutions.

Thesis (M. A. (Psychology)) -- University of Limpopo, 2016 / The aim of this study was to determine the psychological experiences of family caregivers of children with an intellectual disability. The study was conducted along the lines of an exploratory sequential mixed-method design. Firstly, 15 family caregivers were purposively sampled as participants. They described their experiences of caring for children with a formal diagnosis of mild intellectual disability. The research question, which was used as a “grand-tour” question, was: “What are the psychological experiences of family caregivers of children with an intellectual disability?” Themes that emerged included the following: understanding intellectual disability; disclosure of the disability as a result of schooling difficulties; reaction to the disclosure of the disability; challenging behaviour of the child’s integration into the family system, unemployment and financial strains due to the child’s condition and community reaction; social support and stigmatisation. In the quantitative aspect of the study, the researcher used a close-ended questionnaire to collect data from one hundred self-declared primary family caregivers (one per household) of children with an intellectual disability. Results of regression analysis indicated that psychological wellbeing as measured by the Psychological General Well Being Index and its dimensions was predicted mainly by psychological stress and family support. Significant other support and support from friends only predicted life satisfaction. Policy recommendations are advanced based on the findings of the study.

When children are diagnosed with developmental delays, their parents may experience psychological turmoil similar to that experienced by suicidal individuals. We sought to identify adaptive characteristics that may or may not be present in parents of children with developmental delays. Forty-nine children, with disabilities ranging from mild to severe, and their parents, were administered the Reasons for Living Inventory. No significant differences were revealed between men and women, or between individuals in 1-parent versus 2-parent households. The experience of having a disabled child may help to strengthen adaptive characteristics and, possibly, reduce the risk of suicide.