The study investigated the experiences of formal caregivers within a community setting, and the emotional experiences of the individual caregiver. There is insufficient research into the subjective experiences and perceived role of the formal caregiver, as previous studies have concentrated on quantifying the role of the family or informal caregiver. Eleven interviews were conducted with participants from a community-based palliative care institution. The interviews explored areas of interest that surround caregiving, considering both the positive and negative factors that caregivers consider influential within the emotional experience, as well as the role of a formal caregiver. The study investigated the emotional challenges, motivations, support mechanisms and the perceived effectiveness of the coping strategies employed. The data was analysed through thematic content analysis, allowing for the selection of the most salient themes and subthemes, which converged around notions of caregiving and the positive and the negative elements within the caregiving experience of formal caregivers. The data was considered in relation to an interpretative phenomenological perspective, which allowed for the contextualisation and interpretation of the knowledge obtained through the study, and the augmentation of this knowledge with the knowledge already existing in the field of caregiving. The themes were able to provide an understanding of how caregivers construct their role as a formal caregiver, in comparison to the informal caregiver, and their perception of the importance of formal knowledge within caregiving. The themes also provided an understanding of the coping mechanisms and the contextual factors that interrelate with a caregiver’s ability to manage the difficulties within caregiving and their emotional reactions. These findings illustrated that community-based caregiving, although subject to significantly more stressors, also has significant positive aspects that could be fostered to operate as protective mechanisms.

Alzheimer's disease (AD) is a significant public health concern for all elders in the United States. It is a particular concern for the American Indian (AI) population, which is one of the fastest-aging populations in the United States and the smallest, most underrecognized, and most culturally-diverse group in the country. A formal caregiver understanding of AD in the AI population is scarce. This phenomenological study was designed to discern what is known about AD in the AI population by exploring the cultural beliefs and experiences of formal caregivers who provide care for AI dementia patients. Specifically, this study sought to document formal caregiver and AI dementia beliefs about AD. Data came from 4 in-depth interviews that included 3 Western and one AI formal caregiver. These interviews explored the variability of cultural beliefs regarding AD and dementia among a sample of formal caregivers who minister to AI patients; in the interviews, these participants also provided examples of challenges they faced, providing a better cultural understanding of AI dementia. Results suggested that challenges include adopting a bicultural approach to AD, illuminating interactions between patient and provider, and fostering awareness of cultural competency. Research on this topic is critical in advancing cultural, public health, and evidence-based health practices regarding AI dementia patients. The potential implications for social change include enhancing cross cultural provider-patient interactions and advancing public health policy and practice for this underserved population. Many of the issues and challenges explored may have implications for other ethnocultural minority groups.

abstract: The purpose of this study is to identify the needs of older adults with Alzheimer's disease (AD) and related dementias (ADRD) admitted to a rehabilitation setting where they are expected to physically and mentally function to their optimal level of health. To date, no studies have identified the needs and concerns of ADRD patients in rehabilitation settings. The Needs-Driven Dementia-Compromised Behavior (NDB) Model, the researcher's clinical experience, and the state of the current scientific literature will help guide the study. An exploratory qualitative research approach was employed to gather data and discover new information about the ADRD patient's needs and related behavioral outcomes. The qualitative findings on the discrepancies and similarities in perceptions of ADRD patient needs were obtained by examining formal and informal caregivers' perceptions. The researcher recruited registered nurses and certified nurse assistants (RNs and CNAs, formal) and family/friends (informal) who have provided care to patients in inpatient rehabilitation facilities to participate in focus groups and individualized focused interviews. The data were collated and analyzed using a thematic analysis approach. The overarching theme that developed as a result of this approach revealed discordant perceptions and expectations of ADRD patients' needs between the formal and informal caregivers with six subthemes: communication and information, family involvement, rehabilitation nurse philosophy, nursing care, belonging, and patient outcomes. The researcher provided recommendations to help support these needs. These findings will help guide the development of nurse-lead interventions for ADRD patients in a rehabilitation setting. / Dissertation/Thesis / Doctoral Dissertation Nursing and Healthcare Innovation 2014

O envelhecimento populacional tem como uma de suas implicações o aumento do número de indivíduos com incapacidade funcional, o que gera uma demanda por de cuidados de longa duração, exercidos principalmente pelas famílias. Essas, por suas transformações contemporâneas tendem a ter reduzida a sua capacidade de atender a essa demanda. Assim, a presença do cuidador formal domiciliar de pessoa idosa como elemento fundamental, nesse contexto, deixa de ser um problema do âmbito privado e configura-se em uma questão de saúde pública. O presente estudo investigou a trajetória ocupacional de cuidadoras formais domiciliares de pessoas idosas, com o objetivo de compreender seus principais eventos e características, a percepção que elas têm do seu trabalho, de seu processo de capacitação e do cuidado. Nesta pesquisa qualitativa, os dados foram examinados com utilização da técnica da Análise do Discurso, a partir da construção de uma linha cronológica das trajetórias, com seus principais eventos e categorização das frases significativas, destacadas dos relatos. As categorias empíricas de análise foram: trabalho, gênero, qualificação e cuidado. Verificou-se que as mulheres chegam ao trabalho de cuidadora formal domiciliar de pessoa idosa pelo trabalho doméstico, pela qualificação formal ou pela experiência de cuidar de seus familiares idosos. As trajetórias são caracterizadas pela precarização do trabalho, especialmente daqueles desenvolvidos no ambiente domiciliar, pela inserção e reinserção das mulheres no mercado de trabalho via ambiente doméstico, pela desvalorização do trabalho feminino, pela dificuldade em conciliar os cuidados aos filhos e familiares idosos com o trabalho remunerado, pela escolarização e profissionalização (quando há) tardias, pela experiência prática como sendo a principal ferramenta qualificadora, e pelo cuidado como disposição ética promotora de sentido para a atividade laboral. Conclui-se que, a promoção de relações de gênero mais igualitárias, a educação formal específica, a regulamentação da profissão e a adoção de um novo modelo de trabalho e emprego na área de cuidados à pessoa idosa, podem melhorar a qualidade desse trabalho, assim como promover o bem estar dos idosos dependentes e de suas famílias / One of the consequences of population aging is the growth of individuals with functional disability which creates a demand for long term care, primarily exercised by the families. Due to contemporary transformations, families tend to reduce their ability to meet this demand. Therefore, the presence formal home caregiver of elderly as a key element in this context is no longer a private issue to become a matter of public health. The present study investigated the occupational trajectory of formal female home caregivers of elderly, aiming to understand their key events and their main characteristics, as well as the perception they have of their own job, their process of training and about care itself. This qualitative research has examined the data using the Discourse Analysis technique, starting from the construction of a timeline of each trajectory, which embraced its main events and the categorization of all significant sentences, highlighted from their stories. The empirical categories of analysis were: work, gender, qualification and care. It was found that women start up as formal home caregivers of elderly through domestic housework, formal qualification or the experience of caring for their own elderly relatives. The trajectories are characterized by poor job relations, especially the ones developed in the home environment, by the integration and reintegration of women into the labor market through domestic environment, the devaluation of women\'s work, by the difficulty in reconciling the care of their children and elderly relatives with their professional paid activities, for late education and professional training (when existed), by practical experience as the main qualifying tool, and the care as an ethical promoter of sense for labor activities. This study concludes that promoting more equitable gender relation, specific formal education, legal regulation of the profession and the adoption of a new model of work and employment for the formal caregivers of elderly field, tend to improve the quality of this work, as well as promote the well-being of the dependent elderly and their families.

O envelhecimento populacional tem como uma de suas implicações o aumento do número de indivíduos com incapacidade funcional, o que gera uma demanda por de cuidados de longa duração, exercidos principalmente pelas famílias. Essas, por suas transformações contemporâneas tendem a ter reduzida a sua capacidade de atender a essa demanda. Assim, a presença do cuidador formal domiciliar de pessoa idosa como elemento fundamental, nesse contexto, deixa de ser um problema do âmbito privado e configura-se em uma questão de saúde pública. O presente estudo investigou a trajetória ocupacional de cuidadoras formais domiciliares de pessoas idosas, com o objetivo de compreender seus principais eventos e características, a percepção que elas têm do seu trabalho, de seu processo de capacitação e do cuidado. Nesta pesquisa qualitativa, os dados foram examinados com utilização da técnica da Análise do Discurso, a partir da construção de uma linha cronológica das trajetórias, com seus principais eventos e categorização das frases significativas, destacadas dos relatos. As categorias empíricas de análise foram: trabalho, gênero, qualificação e cuidado. Verificou-se que as mulheres chegam ao trabalho de cuidadora formal domiciliar de pessoa idosa pelo trabalho doméstico, pela qualificação formal ou pela experiência de cuidar de seus familiares idosos. As trajetórias são caracterizadas pela precarização do trabalho, especialmente daqueles desenvolvidos no ambiente domiciliar, pela inserção e reinserção das mulheres no mercado de trabalho via ambiente doméstico, pela desvalorização do trabalho feminino, pela dificuldade em conciliar os cuidados aos filhos e familiares idosos com o trabalho remunerado, pela escolarização e profissionalização (quando há) tardias, pela experiência prática como sendo a principal ferramenta qualificadora, e pelo cuidado como disposição ética promotora de sentido para a atividade laboral. Conclui-se que, a promoção de relações de gênero mais igualitárias, a educação formal específica, a regulamentação da profissão e a adoção de um novo modelo de trabalho e emprego na área de cuidados à pessoa idosa, podem melhorar a qualidade desse trabalho, assim como promover o bem estar dos idosos dependentes e de suas famílias / One of the consequences of population aging is the growth of individuals with functional disability which creates a demand for long term care, primarily exercised by the families. Due to contemporary transformations, families tend to reduce their ability to meet this demand. Therefore, the presence formal home caregiver of elderly as a key element in this context is no longer a private issue to become a matter of public health. The present study investigated the occupational trajectory of formal female home caregivers of elderly, aiming to understand their key events and their main characteristics, as well as the perception they have of their own job, their process of training and about care itself. This qualitative research has examined the data using the Discourse Analysis technique, starting from the construction of a timeline of each trajectory, which embraced its main events and the categorization of all significant sentences, highlighted from their stories. The empirical categories of analysis were: work, gender, qualification and care. It was found that women start up as formal home caregivers of elderly through domestic housework, formal qualification or the experience of caring for their own elderly relatives. The trajectories are characterized by poor job relations, especially the ones developed in the home environment, by the integration and reintegration of women into the labor market through domestic environment, the devaluation of women\'s work, by the difficulty in reconciling the care of their children and elderly relatives with their professional paid activities, for late education and professional training (when existed), by practical experience as the main qualifying tool, and the care as an ethical promoter of sense for labor activities. This study concludes that promoting more equitable gender relation, specific formal education, legal regulation of the profession and the adoption of a new model of work and employment for the formal caregivers of elderly field, tend to improve the quality of this work, as well as promote the well-being of the dependent elderly and their families.

Aim: The overall aim of this thesis was to gain a deeper understanding of older people's view of health and care while dependent on community care. Furthermore to describe and compare formal caregivers' perceptions of quality of care, working conditions, competence, general health, and factors associated with quality of care from the caregivers' perspective. Method: Qualitative interviews were conducted with 19 older people in community care who were asked to describe what health and ill health((I), good and bad care meant for them (II). Data were analyzed using content analysis (I) and a phenomenological analysis (II). The formal caregivers; 70 nursing assistants (NAs) 163 enrolled nurses (ENs) and 198 registered nurses (RNs), answered a questionnaire consisting of five instruments: quality of care from the patient's perspective modified to formal caregivers, creative climate questionnaire, stress of conscience, health index, sense of coherence and items on education and competence (III). Statistical analyses were performed containing descriptive statistics, and comparisons between the occupational groups were made using Kruskal-Wallis ANOVA, Mann-Whitney U-test and Pearson's Chi-square test (III). Pearson's  product moment correlation analysis and multiple regression analysis were performed studying the associations between organizational climate, stress of conscience, competence, general health and sense of coherence with quality of care (IV). Results: The older people's health and well-being were related to their own ability to adapt to and compensate for their disabilities and was described as negative and positive poles of autonomy vs. dependence, togetherness vs. being an onlooker, security vs. insecurity and tranquility vs. disturbance (I).  The meaning of good care (II) was that the formal caregivers respected the older people as unique individuals, having the opportunity to live their lives as usual and receiving a safe and secure care. Good care could be experienced when the formal caregivers had adequate knowledge and competence in caring for older people, adequate time and continuity in the care organization (II). Formal caregivers reported higher perceived quality of care in the dimensions medical-technical competence and physical-technical conditions than in identity-oriented approach and socio-cultural atmosphere (III). In the organizational climate three of the dimensions were close to the value of a creative climate and in seven near a stagnant climate. The formal caregivers reported low rate of stress of conscience. The RNs reported to a higher degree than the NAs/ENs a need to gain more knowledge, but the NAs and the ENs more often received training during working hours. The RNs reported lower emotional well-being than the NAs/ENs (III). The formal caregivers' occupation, organizational climate and stress of conscience were associated with perceived quality of care (IV). Implications: The formal caregivers should have an awareness of the importance of kindness and respect, supporting the older people to retain control over their lives. The nursing managers should employ highly competent and adequate numbers of skilled formal caregivers, organize formal caregivers having round the clock continuity. Improvements of organizational climate and stress of conscience are of importance for good quality of care.

Aim: The overall aim of this thesis was to gain a deeper understanding of older people's view of health and care while dependent on community care. Furthermore to describe and compare formal caregivers' perceptions of quality of care, working conditions, competence, general health, and factors associated with quality of care from the caregivers' perspective. Method: Qualitative interviews were conducted with 19 older people in community care who were asked to describe what health and ill health((I), good and bad care meant for them (II). Data were analyzed using content analysis (I) and a phenomenological analysis (II). The formal caregivers; 70 nursing assistants (NAs) 163 enrolled nurses (ENs) and 198 registered nurses (RNs), answered a questionnaire consisting of five instruments: quality of care from the patient's perspective modified to formal caregivers, creative climate questionnaire, stress of conscience, health index, sense of coherence and items on education and competence (III). Statistical analyses were performed containing descriptive statistics, and comparisons between the occupational groups were made using Kruskal-Wallis ANOVA, Mann-Whitney U-test and Pearson's Chi-square test (III). Pearson's  product moment correlation analysis and multiple regression analysis were performed studying the associations between organizational climate, stress of conscience, competence, general health and sense of coherence with quality of care (IV). Results: The older people's health and well-being were related to their own ability to adapt to and compensate for their disabilities and was described as negative and positive poles of autonomy vs. dependence, togetherness vs. being an onlooker, security vs. insecurity and tranquility vs. disturbance (I).  The meaning of good care (II) was that the formal caregivers respected the older people as unique individuals, having the opportunity to live their lives as usual and receiving a safe and secure care. Good care could be experienced when the formal caregivers had adequate knowledge and competence in caring for older people, adequate time and continuity in the care organization (II). Formal caregivers reported higher perceived quality of care in the dimensions medical-technical competence and physical-technical conditions than in identity-oriented approach and socio-cultural atmosphere (III). In the organizational climate three of the dimensions were close to the value of a creative climate and in seven near a stagnant climate. The formal caregivers reported low rate of stress of conscience. The RNs reported to a higher degree than the NAs/ENs a need to gain more knowledge, but the NAs and the ENs more often received training during working hours. The RNs reported lower emotional well-being than the NAs/ENs (III). The formal caregivers' occupation, organizational climate and stress of conscience were associated with perceived quality of care (IV). Implications: The formal caregivers should have an awareness of the importance of kindness and respect, supporting the older people to retain control over their lives. The nursing managers should employ highly competent and adequate numbers of skilled formal caregivers, organize formal caregivers having round the clock continuity. Improvements of organizational climate and stress of conscience are of importance for good quality of care.