RESUMO
Improvisational (improv) theatre skill development holds promise for improving the dementia capability of care partners. In this report, we present analysis of data from an ongoing study on meaningful engagement and quality of life among assisted living (AL) residents with dementia. Using ethnographic methods, we collected data from persons with dementia (n = 59) and their care partners (n = 165) in six diverse AL communities each studied for one year. Building cumulatively on past work and existing literature, we demonstrate the potential benefits of training care partners to use improv skills. We discuss implications, including the need for intervention research.
Assuntos
Demência , Humanos , Qualidade de Vida , Assistência Centrada no Paciente , Cuidadores , Pesquisa QualitativaRESUMO
Meaningful engagement is a key dimension of quality of life among persons living with dementia, yet little is known about how to best to promote it. Guided by grounded theory methods, we present analysis of data collected over a 1-year period in four diverse assisted living (AL) communities as part of the study, "Meaningful Engagement and Quality of Life among Assisted Living Residents with Dementia." Our aims are to: (a) learn how meaningful engagement is negotiated among AL residents with dementia and their care partners; and (b) identify how to create these positive encounters. Researchers followed 33 residents and 100 care partners (formal and informal) and used participant observation, resident record review, and semi-structured interviews. Data analysis identified "engagement capacity" as central to the negotiation of meaningful engagement. We conclude that understanding and optimizing the engagement capacities of residents, care partners, care convoys, and settings, are essential to creating and enhancing meaningful engagement among persons living with dementia.
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Moradias Assistidas , Demência , Humanos , Qualidade de VidaRESUMO
The COVID-19 pandemic has had a significant impact on long-term care residents, family, and staff. Nursing homes are facing persistent challenges such as staff shortage, lack of personal protective equipment (PPE), and staff experiencing mental health issues including burnout. COVID-19 precautions may have made implementing person-centered care (PCC) in nursing homes more difficult. This report provides a descriptive analysis of perceived COVID-19 impact on the PCC practice in nursing homes. Surveys (N = 379) were collected from 11 nursing homes across Georgia. PCC practice barriers include reduced choice for residents, staff anxiety related to COVID-19 precautions, increased prevalence of short-staffing, and expanded duties for direct care workers. Facilitators for PCC were also present and included staff engagement, the provision of mental health resources, supervisor support, and empowerment of staff. Applied practice and research to address these barriers and expand implementation of facilitators is needed.
Assuntos
COVID-19 , Humanos , COVID-19/epidemiologia , Pandemias , Casas de Saúde , Pessoal de Saúde/psicologia , Assistência Centrada no PacienteRESUMO
Assisted living (AL) is increasingly a site of end-of-life care and a long-term care location where growing numbers of people are aging in place and dying. Despite these trends, limited research focuses on how death and grief impact the work environment in AL. This grounded theory analysis examined qualitative data collected from 27 administrators and 38 direct care workers (DCWs) in 7 diverse settings. As assisted living administrators and DCWs experienced resident death, they engaged in a dynamic and individualized process of "managing the normalization of death," which refers to the balance of self-identity and workplace identity. The process of reconciling these opposing contexts in AL involved several individual- and community-level conditions. Administrators and DCWs would benefit from additional resources and training around death. Increasing collaboration with hospice and clarifying policies about death communication would better prepare the workforce to acknowledge the end of life in assisted living.
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Vida Independente , Assistência Terminal , Idoso , Humanos , Recursos Humanos , Pessoal de Saúde , Local de TrabalhoRESUMO
BACKGROUND AND OBJECTIVES: Intimacy, a social relationship component, continues to be essential in later life, including for older adults in long-term care such as assisted living. Yet, no previous study has conceptualized how individuals experience intimacy holistically (i.e., broadly defined) and within the context of later life, health decline, and long-term care. The purpose of this analysis was to provide an in-depth understanding of intimacy in the lives of older adults in assisted living. RESEARCH DESIGN AND METHODS: Using grounded theory methods, we analyzed data from the "Convoys of Care" (Kemp, PI: R01AG044368) longitudinal, qualitative research project. Data consisted of 2224 h of participant observation and interviews with 28 assisted living residents (aged 58-96), and their care partners (n = 114) followed over two years from four diverse assisted living communities. RESULTS: Residents' experience with intimacy was a process involving four dimensions: emotional, intellectual, spiritual, and physical. Intimacy occurred in platonic or romantic forms and was dynamic over time alongside residents' intimacy needs. Residents engaged in an ongoing process requiring that they manage their needs while negotiating intimacy opportunities and constraints. DISCUSSION AND IMPLICATIONS: Our findings expand the current conceptualization of intimacy in later life, specifically in the context of long-term care. Findings indicate the need for an approach to long-term care that addresses individuals' intimacy needs and preferences.
Assuntos
Comportamento Sexual , Parceiros Sexuais , Idoso , Humanos , Relações Interpessoais , Solidão , Pesquisa QualitativaRESUMO
Objective: The overall goal of this analysis was to learn about residents' quality of life and quality of care in assisted living over time and from multiple viewpoints within support networks. Method: This grounded theory analysis examined qualitative data collected from 50 residents and 169 of their care network members followed over two consecutive 2-year periods in 8 diverse settings. Results: Quality involved a dynamic process of "negotiating priorities," which refers to working out what is most important for residents' quality of life and care. Resident and care partner priorities were not always consistent or shared, in part because quality is personal, subjective, dynamic, and situational. Discussion: Communication and collaboration among formal and informal care partners are vital to residents' ability to age in place with a high quality of life and quality care.
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Moradias Assistidas , Qualidade de Vida , Comunicação , Humanos , Negociação , Assistência ao PacienteRESUMO
Assisted living (AL) communities are long-term care settings where people live, work, and visit, and where social relationships and care, including end-of-life care, are negotiated. Assisted living is fraught with uncertainty and conflict about values, especially given residents' cognitive and physical frailty. These value-laden issues have implications for both resident and care partners' experiences. Yet, almost no research has examined ethics in this complex care environment. In this article, we draw on and synthesize existing theory, research, and practice knowledge to offer a conceptual model and discuss case examples that highlight everyday ethical issues in AL. We conceptualize the moral decision-making process and hence the moral landscape of AL, as influenced by a myriad of multi-level factors that shape interpersonal encounters and decision-making involving residents and their care partners, which ultimately shape individuals' actions and experiences in the setting. We conclude by discussing implications for research, policy, and practice.
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Assistência de Longa Duração , Assistência Terminal , Tomada de Decisões , Humanos , Princípios MoraisRESUMO
A person-centered approach to care shifts the mind-set of care partners from a traditional medical model to a social model in managing chronic conditions. Using a qualitative descriptive approach, this study examines the barriers and facilitators to the implementation of person-centered care (PCC) and how the integration of complementary and alternative approaches (CAA) has the potential to improve residents' quality of life in nursing homes (NHs). Findings indicate that NHs offer a wide range of engagement activities, but these activities are not purposefully integrated into a person-centered plan of care. Factors such as turnover, "working short," supervisor support, and rising resident care needs make it challenging to implement PCC in NHs. This knowledge of the landscape of activities will help us identify and improve strategies for supporting residents at a deeper, more meaningful level. CAA has the potential to be therapeutic for residents if integrated into collaborative approaches to care.
Assuntos
Terapias Complementares , Acessibilidade aos Serviços de Saúde , Casas de Saúde , Assistência Centrada no Paciente , Qualidade de Vida , Terapias Complementares/métodos , Humanos , Assistência Centrada no Paciente/métodos , Pesquisa QualitativaRESUMO
Meaningful engagement is an important dimension of quality of life and care for persons living with dementia, including the growing number who reside in assisted living communities. This report presents preliminary findings from an ongoing qualitative study aimed at identifying best care practices to create and maintain meaningful engagement among persons with dementia. Over a 1-year period, we conducted interviews, residents' record review, and participant observations in four diverse care communities. Our analysis identified four approaches that successfully promote meaningful engagement: (a) knowing the person, (b) connecting with and meeting people where they are, (c) being in the moment, and (d) viewing all encounters as opportunity. Incorporation of these approaches in care routines and adoption by all care partners can promote meaningful engagement, including during crises such as COVID-19.
Assuntos
COVID-19 , Demência , Atenção à Saúde , Humanos , Qualidade de Vida , SARS-CoV-2RESUMO
PURPOSE: This study aimed to explore how married individuals construct narratives following spinal cord injury (SCI). DESIGN: Prospective qualitative study. METHODS: Eighteen married people with SCI were recruited during inpatient hospitalization. In-depth interviews were conducted at approximately 1, 4, and 7 months post-SCI. Interviews were analyzed using thematic analysis. FINDINGS: Participants constructed three primary narrative types (optimistic, anxious, and stability) about their trajectories following SCI, focusing on their expectations about recovery and their past and current experiences with their spouse, peers, and health professionals. These narrative types are the foundation for understanding how people make sense of the rehabilitation experience in relation to others. CONCLUSIONS: Findings provide an initial understanding of how expectations of life with SCI as well as social interactions in the healthcare setting influence experiences of injury and recovery. CLINICAL RELEVANCE: Findings can inform future interventions during SCI rehabilitation to ease transitions and decrease anxiety following SCI.
Assuntos
Acontecimentos que Mudam a Vida , Traumatismos da Medula Espinal/psicologia , Traumatismos da Medula Espinal/reabilitação , Adaptação Psicológica , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Motivação , Estudos Prospectivos , Pesquisa QualitativaRESUMO
Despite continuity in the desire for sex and partnership, many older adults experience a lack of intimacy in late life. The use of assisted living is a complicating factor for understanding issues of partnership, sex, and intimacy for older adults. Using in-depth interviews with 23 assisted living residents and grounded theory methods, we examined how residents negotiate a lack of intimacy in assisted living. The process of negotiation entailed three factors: desire, barriers, and strategies. Although some residents continued to desire intimacy, there was a marked absence of dating or intimacy in our study sites. Findings highlight unique barriers to acting on desire and the strategies residents used as aligning actions between desire and barriers. This research expands previous studies of sexuality and older adults by examining the complex ways in which they balanced desire and barriers through the use of strategies within the assisted living environment.
Assuntos
Envelhecimento/psicologia , Moradias Assistidas , Negociação , Parceiros Sexuais , Sexualidade , Idoso , Idoso de 80 Anos ou mais , Feminino , Teoria Fundamentada , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Qualidade de Vida , Estados UnidosRESUMO
Research on informal care for older adults tends to consider middle- and upper-class individuals. Consequently, less is known about caregiving among low-income families. We present findings from an exploratory qualitative study of low-income African American mothers (n = 5) and their caregiving daughters (n = 5). Guided by a feminist framework, we consider how individual, familial, and societal factors contribute to the intersectional complexities of caregiving. Despite the unavailability of formal resources, we found the 10 women positive in their outlook. Furthermore, this study contributes to a growing body of research that identifies both negative and positive aspects of caregiving among an underrepresented population.
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Filhos Adultos/psicologia , Sobrecarga do Cuidador/psicologia , Mães/psicologia , Núcleo Familiar/psicologia , Pobreza/psicologia , Adulto , Negro ou Afro-Americano/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Pessoa de Meia-Idade , Relações Mãe-Filho , Pesquisa QualitativaRESUMO
Objectives: Frail and disabled individuals such as assisted living residents are embedded in "care convoys" comprised of paid and unpaid caregivers. We sought to learn how care convoys are configured and function in assisted living and understand how and why they vary and with what resident and caregiver outcomes. Method: We analyzed data from a qualitative study involving formal in-depth interviews, participant observation and informal interviewing, and record review. We prospectively studied 28 residents and 114 care convoy members drawn from four diverse assisted living communities over 2 years. Results: Care convoys involved family and friends who operated individually or shared responsibility, assisted living staff, and multiple external care workers. Residents and convoy members engaged in processes of "maneuvering together, apart, and at odds" as they negotiated the care landscape routinely and during health crises. Based on consensus levels, and the quality of collaboration and communication, we identified three main convoy types: cohesive, fragmented, and discordant. Discussion: Care convoys clearly shape care experiences and outcomes. Identifying strategies for establishing effective communication and collaboration practices and promoting convoy member consensus, particularly over time, is essential to the creation and maintenance of successful and supportive care partnerships.
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Moradias Assistidas , Adulto , Idoso , Idoso de 80 Anos ou mais , Moradias Assistidas/organização & administração , Cuidadores/psicologia , Comunicação , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Assistência ao Paciente/métodos , Assistência ao Paciente/psicologia , Estudos ProspectivosRESUMO
In assisted living (AL) facilities, workers are intimately involved in the lives of residents. Existing research on AL demonstrates the imbalance of this environment, which is a personal home for the residents and a workplace for staff. Using observational and interview data collected from six AL facilities, this grounded theory project analyzes how AL staff define, understand, and negotiate sexual comments, joking, and physical touch. We developed a conceptual model to describe how such harassment was perceived, experienced by AL workers, and how they responded. Sexualized behavior or harassment was experienced by workers of every status. We found that words and actions were contextualized based on resident and worker characteristics and the behavior. Staff members refused to engage residents, redirected them, or reframed the words and gestures to get the job done. Reporting the incidents was less common. We conclude by discussing implications for policy and research.
Assuntos
Moradias Assistidas , Assédio Sexual , Local de Trabalho , Adolescente , Adulto , Feminino , Grupos Focais , Teoria Fundamentada , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Comportamento Sexual , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVES: In contrast to nursing homes, assisted living (AL) facilities emphasize independence and autonomy as part of their mission. However, we do not know to what extent this extends to sexual freedom and autonomy. METHOD: Using grounded theory methodology and symbolic interactionism, we examine how staff and administrators in AL facilities discuss residents' rights to sexual freedom and how this influences the environment of AL. RESULTS: Staff and administrators engage in a contradictory discourse of residents' rights that simultaneously affirms the philosophy of AL while behaving in ways that create an environment of surveillance and undermine those rights. DISCUSSION: A discourse of residents' rights masks a significant conflict between autonomy and protection in regards to sexual freedom in AL.
Assuntos
Envelhecimento/psicologia , Moradias Assistidas/normas , Atitude do Pessoal de Saúde , Instituição de Longa Permanência para Idosos/normas , Autonomia Pessoal , Comportamento Sexual/psicologia , Idoso , Idoso de 80 Anos ou mais , Humanos , Pessoa de Meia-IdadeRESUMO
As the population aged 65 and older grows, it becomes imperative for health care providers to expand their knowledge regarding geriatric conditions and concerns. Dementia is a devastating degenerative disease process that is affecting millions of individuals in the United States, with significant economic and emotional burden on family and caregivers. The need for further dementia education in physical therapy school is essential to improve attitudes and treatment that affect patient outcomes and quality of care. This physical therapy program implemented a 12-hour multimodal experiential learning module designed to educate their students on the challenges associated with dementia to increase knowledge and confidence when treating these patients. The results of this study showed statistically significant improvements in overall confidence and knowledge of treating patients with dementia. The study finds the addition of experiential learning to traditional didactic coursework improves students' reported confidence in working with patients with dementia and understanding the challenges associated with treating patients with dementia.
Assuntos
Demência , Geriatria/educação , Administração dos Cuidados ao Paciente , Especialidade de Fisioterapia/educação , Aprendizagem Baseada em Problemas/métodos , Adulto , Idoso , Atitude do Pessoal de Saúde , Competência Clínica , Demência/psicologia , Demência/terapia , Educação/métodos , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Modelos Educacionais , Administração dos Cuidados ao Paciente/métodos , Administração dos Cuidados ao Paciente/normasRESUMO
In this article, we analyze the research experiences associated with a longitudinal qualitative study of residents' care networks in assisted living. Using data from researcher meetings, field notes, and memos, we critically examine our design and decision making and accompanying methodological implications. We focus on one complete wave of data collection involving 28 residents and 114 care network members in four diverse settings followed for 2 years. We identify study features that make our research innovative, but that also represent significant challenges. They include the focus and topic; settings and participants; scope and design complexity; nature, modes, frequency, and duration of data collection; and analytic approach. Each feature has methodological implications, including benefits and challenges pertaining to recruitment, retention, data collection, quality, and management, research team work, researcher roles, ethics, and dissemination. Our analysis demonstrates the value of our approach and of reflecting on and sharing methodological processes for cumulative knowledge building.
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Moradias Assistidas/organização & administração , Continuidade da Assistência ao Paciente/organização & administração , Estudos Longitudinais , Pesquisa Qualitativa , Projetos de Pesquisa , Confidencialidade , Ética em Pesquisa , Humanos , Vida Independente , Papel ProfissionalRESUMO
Social relationships can have considerable influence on physical and mental well-being in later life, particularly for those in long-term care settings such as assisted living (AL). Research set in AL suggests that other residents are among the most available social contacts and that co-resident relationships can affect life satisfaction, quality of life, and well-being. Functional status is a major factor influencing relationships, yet AL research has not studied in-depth or systematically considered the role it plays in residents' relationships. This study examines the influences of physical and mental function on co-resident relationships in AL and identifies the factors shaping the influence of functional status. We present an analysis of qualitative data collected over a one-year period in two distinct AL settings. Data collection included: participant observation, informal interviews, and formal in-depth interviews with staff, residents, administrators and visitors, as well as surveys with residents. Grounded theory methods guided our data collection and analysis. Our analysis identified the core category, "coming together and pulling apart", which signifies that functional status is multi-directional, fluid, and operates in different ways in various situations and across time. Key facility- (e.g., admission and retention practices, staff intervention) and resident-level (e.g., personal and situational characteristics) factors shape the influence of functional status on co-resident relationships. Based on our findings, we suggest strategies for promoting positive relationships among residents in AL, including the need to educate staff, families, and residents.
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Moradias Assistidas , Nível de Saúde , Relações Interpessoais , Saúde Mental , Qualidade de Vida/psicologia , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , Transtornos Cognitivos/psicologia , Demência/psicologia , Pessoas com Deficiência/psicologia , Feminino , Idoso Fragilizado/psicologia , Humanos , Masculino , Competência Mental/psicologia , Pessoa de Meia-IdadeRESUMO
This research explores the association between sexual identity and sexual behavior and how that association varies across gender and race in the American Deep South. Multinomial logistic regression analysis is used to determine the likelihood of each sexual identity given past sexual behavior, sexual relationships, and other social characteristics. The more traditional cultural climate of the South appears to suppress identification as a sexual minority. Sexual identification in the Deep South is primarily a product of sexual activity and sexual relationships, although attitudes toward and contact with the lesbian, gay, bisexual, and transgender (LGBT) community play a minor role. Although most participants' sexual behaviors and identities were in concordance, sexual discordance was highest for White women and lowest for White men. Discordance was also associated with traditional men's roles attitudes, negative homosexuality attitudes, and contact with the LGBT community. It is hoped that these results encourage scholarship that deconstructs the sexual behavior and identity of all groups, not just oppressed groups.