RESUMO
Introducción: Las enfermedades cerebrovasculares son consideradas un problema de salud pública que afectan muchas capacidades en el individuo, entre ellas la comunicación; de esta manera el cuidador cumple un papel fundamental en su recuperación. Objetivo: Describir el rol comunicativo del cuidador en la atención a pacientes con secuelas de accidente cerebrovascular en la ciudad de Sincelejo, Colombia. Materiales y métodos: Paradigma positivista, enfoque cuantitativo y estudio descriptivo de corte transversal realizado con 40 cuidadores, seleccionados según muestreo por criterios y reclutamiento en cadena. Se utilizó una encuesta sociodemográfica, una sobre favorecimiento y bienestar comunicativo y Escala Likert, se realizó análisis de fiabilidad y consistencia interna del instrumento. Resultados: Predominaron cuidadores de sexo femenino, sobresale el cuidador informal, con estudios de secundaria y estrato socioeconómico bajo. Se encontró una actitud favorable en la competencia del ser y saber hacer, prima el buen trato, justicia y respeto. La competencia del saber evidenció actitud desfavorable, caracterizada por un conocimiento limitado frente a la patología, insuficientes destrezas, técnicas y habilidades para cumplir sus funciones y estrategias empleadas. Conclusión: Es necesario cualificar al cuidador en la atención del paciente con accidente cerebrovascular, mediante programas de que dinamicen la competencia del ser, saber y saber hacer
Introduction: Cerebrovascular diseases are a public health problem affecting the different capabilities of patients, including communication. Thus, caregivers play a fundamental role in their recovery. Objective: To describe the communicative role of caregivers in the support of patients with stroke sequelae in the city of Sincelejo, Colombia. Materials and methods: A positivist paradigm, quantitative approach, and descriptive cross-sectional study was carried out with 40 caregivers, who were selected according to criteria sampling and chain recruitment. A sociodemographic survey about favorability and communicative well-being as well as the Likert Scale were applied. A reliability and internal consistency analysis was conducted. Results: The majority of caregivers were women. Informal caregivers, with high school education, and belonging to low socioeconomic status were also predominant. A positive attitude regarding competences such as being and knowing what to do; appropriate treatment of patients, with justice and respect, were observed as common features. The knowledge competence was considered unfavorable, which was characterized by limited understanding regarding pathology, strategies used, and insufficient skills, techniques, and abilities to fulfill their functions. Conclusions: Caregivers of stroke patients should be qualified through programs that improve the being, knowing, and knowing how to do competencies.
Introdução: As doenças cerebrovasculares são consideradas um problema de saúde pública que afeta diversas capacidades do indivíduo, incluindo a comunicação; desta forma, o cuidador desempenha um papel fundamental na sua recuperação. Objetivo: Descrever o papel comunicativo do cuidador no cuidado de pacientes com sequelas de acidente vascular cerebral na cidade de Sincelejo, Colômbia. Materiais e métodos: Paradigma positivista, abordagem quantitativa e estudo transversal descritivo realizado com 40 cuidadores, selecionados segundo critérios de amostragem e recrutamento em cadeia. Foi utilizado um inquérito sociodemográfico, um de favorabilidade e bem-estar comunicativo e uma Escala Likert, foi realizada uma análise da fiabilidade e consistência interna do instrumento. Resultados: Predominaram cuidadores do sexo feminino, destacando-se os cuidadores informais, com escolaridade média e baixo nível socioeconômico. Encontrou-se na competição uma atitude favorável por ser e saber fazer, prevalecendo o bom tratamento, a justiça e o respeito. A competência conhecimento apresentou atitude desfavorável, caracterizada por conhecimento limitado sobre a patologia, habilidades, técnicas e habilidades insuficientes para cumprir suas funções e estratégias utilizadas. Conclusões: É necessário qualificar o cuidador no cuidado ao paciente com AVC, por meio de programas que potencializem a competência de ser, saber e saber fazer.
Assuntos
Humanos , Masculino , FemininoRESUMO
Objetivo: analisar a relação entre apoio social e qualidade do sono de pessoas idosas que cuidam de outros idosos em ambiente de vulnerabilidade social. Método: estudo transversal realizado com 65 cuidadores entrevistados por meio de instrumento de caracterização, Índice de Katz, Escala de Lawton e Brody, Índice de Qualidade do Sono de Pittsburgh e Escala de Apoio Social do Medical Outcomes Study, com dados analisados com testes de comparação e de correlação. Resultados: a maioria eram mulheres, cônjuges do idoso cuidado e possuíam sono de má qualidade. Observou-se correlação fraca e inversa entre má qualidade do sono e a dimensão interação social positiva (Rho=-0,27; p=0,028). Identificou-se relação significativa entre: apoio material e disfunção diurna (p=0,034); apoio afetivo e eficiência do sono (p=0,026); interação social positiva e qualidade subjetiva do sono (p=0,001) e disfunção diurna (p=0,008). Conclusão: Quanto maior a interação social positiva, melhor é a qualidade do sono.
Objective: to analyze the relationship between social support and sleep quality of elderly individuals who care for other elderly individuals in a socially vulnerable environment. Method: a cross-sectional study conducted with 65 caregivers interviewed using a characterization instrument, Katz Index, Lawton and Brody Scale, Pittsburgh Sleep Quality Index, and Medical Outcomes Study Social Support Scale, with data analyzed using comparison and correlation tests. Results: the majority were women, spouses of the elderly being cared for, and had poor sleep quality. A weak and inverse correlation was observed between poor sleep quality and the positive social interaction dimension (Rho=-0.27; p=0.028). Significant relationships were identified between: material support and daytime dysfunction (p=0.034); emotional support and sleep efficiency (p=0.026); positive social interaction and subjective sleep quality (p=0.001), as well as daytime dysfunction (p=0.008). Conclusion: The higher the positive social interaction, the better the sleep quality.
Objetivo: analizar la relación entre el apoyo social y la calidad del sueño de personas mayores que cuidan de otras personas mayores en entornos socialmente vulnerables. Método: estudio transversal realizado con 65 cuidadores entrevistados mediante un instrumento de caracterización, Índice de Katz, Escala de Lawton y Brody, Índice de Calidad del Sueño de Pittsburgh y Escala de Apoyo Social del Medical Outcomes Study, los datos fueron analizados mediante pruebas de comparación y correlación. Resultados: la mayoría eran mujeres, cónyuges del adulto mayor que recibe el cuidado y tenían mala calidad del sueño. Se observó una correlación débil e inversa entre la mala calidad del sueño y la dimensión de interacción social positiva (Rho=-0,27; p=0,028). Se identificó que había relación significativa entre: apoyo material y disfunción diurna (p=0,034); apoyo afectivo y eficiencia del sueño (p=0,026); interacción social positiva y calidad subjetiva del sueño (p=0,001) y disfunción diurna (p=0,008). Conclusión: Cuanto mayor sea la interacción social positiva, mejor será la calidad del sueño.
RESUMO
AIM: This study aimed to develop a theory to guide family members caring for young people with depressive disorders and suicidal ideations. DESIGN: Strauss and Corbin's Grounded Theory. METHODS: Theoretical sampling was used to recruit primary family caregivers (aged 22-60) of young people experiencing depressive disorders and suicidal ideations from hospitals and psychiatric clinics in Taiwan. Data were collected using interviews (n = 23) in 2023. Data were analysed using Corbin & Strauss' analytical framework, including open, axial and selective coding until theoretical saturation was reached. RESULTS: A paradigm model was used to link the 13 categories and develop a substantive theory to help guide family members in the care of their young persons with depressive disorders and suicidal ideations. The core category that emerged was 'Struggling to contain the young person's life by adjusting, assisting, and protecting them from diving into depression'. Other key categories interconnected with this core category were-creating a nurturing environment, adjusting to changes, protecting the young person's safety and assisting with their medical treatment. CONCLUSION: Family caregivers could use this theory as a guide to enhance the care of young persons experiencing depressive disorders and suicidal ideations and accompany them alongside the healing process. IMPLICATIONS FOR THE PROFESSION: Nursing professionals could provide psychoeducation to family caregivers on how to hold the young person gently and acquire compassion for the young persons' lived experience, thoughts and emotions, by creating a nurturing environment, adjusting to changes, protecting their safety and assisting with their medical treatment. IMPACT: This theory provides valuable guidance for future intervention research aimed at improving family caregivers' ability to care for young persons with depressive disorders and suicidal ideations. REPORTING METHOD: The COREQ guidelines were utilised. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.
RESUMO
Across the globe, spiritual care is offered by individuals, healthcare chaplains, and humanitarian, social and related spiritual groups on account of zeal, voluntary and paid services. Sometimes, services are provided without understanding the connectivity of compassion, spiritual care, and scientific protocols. There are instances where health professionals and managers disagree with spiritual caregivers or reject spiritual services because of poor service deliveries in conflict with healthcare protocols. Against this background, this article focuses on how spiritual care services can be provided scientifically to improve service delivery. It presents leading questions to link the scientific and compassionate approach to spiritual care. These include-What is science? What is compassion? What is spiritual care? What makes compassion and spiritual care scientific? Are there tenets of compassion in religions? How are compassion, science and spiritual care linked? What are the implications of the intersections for public health and safety? Hopefully, the provided answers may improve the service delivery performance of spiritual caregivers and their collaboration with healthcare professionals, social workers, and related groups.
RESUMO
Objective: This study adopted a dyadic analysis method to examine the effect of perceived stress on emotional distress and determine whether relationship satisfaction and distress disclosure act as mediators in colorectal cancer (CRC) enterostomy patient-caregiver dyads. Methods: A total of 312 patient-caregiver dyads completed measures assessing perceived stress, relationship satisfaction, distress disclosure, and emotional distress. The data were analyzed using the actor-partner interdependence mediation model. Results: This study found that the perceived stress of patients and caregivers both had direct and indirect actor effects on emotional distress (through relationship satisfaction). Another important finding is that perceived stress had indirect actor-partner effects (through distress disclosure) on emotional distress. Conclusions: This study highlights that perceived stress, relationship satisfaction, and distress disclosure of patients and their caregivers are key factors that can be considered for improving emotional distress. It also partially confirmed the interdependence of patients with CRC and their caregivers.
RESUMO
BACKGROUND: In China, Internet-Based Sharing Nursing Service (IBSNS) is a new mode of nursing service delivery that has been in practice for over five years, which enables nurses to provide care at clients' home. However, the acceptance and associated factors of IBSNS among caregivers of elderly with chronic diseases who are the major clients of the service were unclear. AIM: To explore the acceptance of IBSNS and its associated factors among Chinese caregivers of elderly patient with chronic diseases based on the modified Technology Acceptance Model (mTAM). METHODS: A cross-sectional study was conducted from February 2023 to March 2023. Caregivers of hospitalized elderly with chronic diseases were recruited using convenience sampling method from three hospitals in Beijing, China. Data were obtained from self-reports of participants. Structural equation modeling was used to analyze data. RESULTS: A total of 65.1% of the caregivers had neutral to weakly positive behavioral intention of IBSNS use. The mTAM model was supported with good model fit. Perceived ease of use was positively associated with perceived usefulness. Both perceived usefulness and perceived security were positively associated with attitude, consequently, attitude was associated with behavioral intention. CONCLUSIONS: Improving the ease of use, security, and usefulness may be helpful to increase the positive attitude towards IBSNS and behavioral intention of using IBSNS, which provides valuable insights that can help healthcare providers improve the integration of technology in patient care, ultimately leading to better health outcomes and more efficient healthcare systems.
RESUMO
AIM: To explore the actor-partner effect and mediating role of depression on family strength and life satisfaction among children with disabilities and their parent-caregiver dyads. DESIGN: A cross-sectional study using secondary data collected from the 2020 (third) Korea Disability and Life Dynamics Panel. METHODS: This study included 434 Korean dyads of children with disabilities and their parent caregivers. A dyadic analysis was performed using the actor-partner interdependence mediation model. RESULTS: The findings showed significant indirect actor effects of family strength on life satisfaction through depression for children with disabilities and their parent caregivers. The direct partner effects of one's family strengths on a partner's life satisfaction were statistically significant only for children. Additionally, significant indirect partner effects were observed in the association between parents' family strengths and children's life satisfaction through their own and their children's depression. The findings indicated that the life satisfaction of children with disabilities was more likely to be affected by their parent caregivers' perceived family strengths and depression. CONCLUSION: It is significant for health professionals to acknowledge the mediating and cross-over pathways linking family strengths to life satisfaction through depression and, thus, focus on family-based strategies to enhance life satisfaction among children with disabilities and their parent caregivers. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: This study highlights the need for family-oriented mental health interventions and education to promote life satisfaction among children with disabilities and their parent caregivers. IMPACT: Basic data were provided for establishing efficient healthcare education and counselling protocols and integrated family intervention programmes that can contribute to improving life satisfaction through the reduction of depression by strengthening the family strengths of disabled children-parent caregivers dyads. In future, studies should explore dyadic interdependence among children with disabilities and their parent caregivers. REPORTING METHOD: STROBE guidelines were followed for this study. PATIENT OR PUBLIC CONTRIBUTION: No public or patient contribution was required for this study.
RESUMO
BACKGROUND: Many children with sensory processing differences receive occupational therapy services using sensory integration therapy (SIT). Studies exist to demonstrate the effects of this intervention on the child receiving the service. However, children exist as part of a family unit. There is limited research to examine the effect of SIT on the family. OBJECTIVES: The purpose of this study was to explore the perceptions and experiences of caregivers as to the impact on families of children who received SIT. METHODOLOGY: Qualitative, phenomenological methodology was utilized. RESULTS: Results revealed four themes: family routines, parent response/reaction to sensory, modified participation in family activities needs, and improved regulation leading to increased family participation outside the home. CONCLUSION: This study indicates that parents perceive positive effects on participation of the family unit and for the child receiving SIT therapy.
Perceived Impact of Sensory Integration Therapy on the FamilyThis study provides information on how occupational therapy using a sensory integration approach impacts more than just the child who receives the service and extends to the family, positively impacting participation in daily life.
RESUMO
Parent-carers of children with rare diseases, including osteogenesis imperfecta (OI), represent a vulnerable and largely invisible population. Despite existing research on familial OI caregiving, the unique experiences, perspectives, and feelings of parent-carers remain poorly understood, prompting this study to delve into these aspects through the subjective lens of voices. The aim of this study was to explore the voices of parent-carers in navigating the complexities of pediatric OI care. Employing a narrative design informed by social constructionism, 15 parent-carers of pediatric OI patients were purposively sampled from a tertiary hospital in Shandong Province, China, between May and August 2021. Individual face-to-face interviews were conducted, and data were analyzed using the voice-centered relational approach followed by thematic analysis. Parent-carers' narratives revealed two overarching themes. The first theme, "the all-encompassing caregiver role," highlighted the profound internal transformation parent-carers underwent, with three key aspects of experiences: "the centrality of care," "life on hold," and "guarded silence." The second theme, "navigating ambivalence," captured the complex psycho-emotional journey of parent-carers as they balanced denial and acceptance, experienced the burden and responsibility of caregiving, navigated uncertainty with hope, and sought to normalize the care recipients' experiences while acknowledging their unique needs. Our findings suggest the need for developing tailored support strategies that address not only practical challenges but also the psychosocial dimensions of caregiving, to effectively assist and empower this marginalized carer population.
RESUMO
Introduction: This study aimed to explore the perceptions and experiences of family caregivers and nurses after the signing of a do-not-resuscitate (DNR) order for patients in respiratory care wards (RCWs). The goal was to facilitate nurses' preparedness for responding to family reactions and feelings in future DNR situations. Methods: The study employed semi-structured interviews with ventilator-dependent patients' families and nurses recruited from RCWs in regional and district hospitals in New Taipei City. It explored the feelings, motivations, and decision-making processes concerning DNR orders. Thematic analysis identified key themes and patterns. Results: Twenty-two family members and 12 nurses, caring for 22 patients, participated in the interviews, resulting in 44 interview transcripts. The majority of family members were male (54.5%), whereas all nurses were female. Family caregivers and nurses had nuanced perceptions and showed emotional responses after the signing of DNR orders. Family caregivers grappled with feelings of guilt, uncertainty, and the weight of decision-making, while nurses navigated ethical dilemmas and sought to support families through the process. Common themes included the desire to minimize the patient's suffering, concerns about quality of life, and the need for clear communication and support. Conclusion: The understanding of family caregivers' and nurses' perceptions of DNR orders for patients in RCWs illuminates complex end-of-life care challenges. A key gap in the study was its limited generalizability due to focusing on specific RCWs. Nonetheless, the insights gained may enable health care providers to tailor support, facilitate informed decision-making, and promote compassionate care for ventilator-dependent patients and their families.
RESUMO
BACKGROUND: People living with dementia and their carers often experience difficulties in effectively managing medications and have indicated they lack necessary support, information and guidance. Recognising the medication management information needs of this population is an important first step in addressing these issues. OBJECTIVES: To identify the priorities for information on medication management expressed by people living with dementia and their carers. METHODS: A scoping review with systematic search was conducted from inception to 12 May 2023 for any original studies that reported the information needs of people living with dementia and their carers (informal, i.e. unpaid or within an existing relationship) regarding medication management. Two authors independently screened the abstracts, full-texts and extracted data. Study characteristics were described descriptively, and themes of information need were extracted using an iterative approach. RESULTS: Of the 11 367 records screened, 35 full-texts were included. All studies (n = 35) involved carers, with 17 also including people living with dementia. Most studies (n = 30) were conducted in the community and used qualitative methods (n = 32). Five major themes of information need were identified: critical medication information; medication effects; medication indication(s); disease progression and impact on medications; and safe and appropriate administration of medications. People living with dementia and their carers indicated they need more medication management information generally and want it simple, tailored and relevant. CONCLUSIONS: This review highlights the key medication information priorities for people living with dementia and their carers and will help guide the provision of medication management guidance and development of new information resources.
Assuntos
Cuidadores , Demência , Humanos , Demência/psicologia , Demência/tratamento farmacológico , Cuidadores/psicologia , Avaliação das Necessidades , Conduta do Tratamento Medicamentoso , Idoso , Conhecimentos, Atitudes e Prática em Saúde , MasculinoRESUMO
Health literacy is a public health issue. Unpaid caregivers of older people with low health literacy may have difficulties providing care, exerting a negative impact on the care process. The aim of the present study was to perform a systematic review of the literature on factors associated with low health literacy in unpaid caregivers of older people. Searches for relevant articles were conducted in the Cochrane Library, Embase, LILACS, PubMed and Web of Science databases. A total of 1440 articles were identified, nine of which met the eligibility criteria and were included in the systematic review, which was registered in PROSPERO (CRD42024522986). A total of 2209 unpaid caregivers participated in the studies selected for this review. Most were women (67.2%). The average frequency of inadequate health literacy was 27.1%. Sociodemographic characteristics (i.e. advanced age, low educational level, the female sex), factors related to the care process (i.e. low acculturation, low empowerment, poor ability to read medication package inserts, lower care capacity, greater disease severity, hospitalization of care recipients), cognitive factors and factors related to quality of life/well-being (i.e. less social support, poorer quality of life, greater cognitive impairment, higher levels of burden) were associated with low health literacy. In conclusion, low health literacy in unpaid caregivers of older people is associated with sociodemographic, care-related and cognitive factors as well as factors related to quality of life/well-being. Low health literacy may exert a negative impact on the health of caregivers and, consequently, the quality of care provided to older people.
Assuntos
Cuidadores , Letramento em Saúde , Humanos , Cuidadores/psicologia , Idoso , Qualidade de Vida , Feminino , Masculino , Apoio SocialRESUMO
INTRODUCTION: Sickle cell disease (SCD) is the most common genetic disorder among children. As the most common type of SCD, sickle cell anemia (SCA) is associated with severe complications across the lifespan. As parents/caregivers hold primary disease management responsibility during childhood, their involvement in disease management activities, including medical decision-making, is critical to successful and timely management of pediatric SCD. However, the processes through which caregivers make SCD-related decisions remain unknown. The current paper examined caregivers' decision-making processes and priorities when managing their child's SCD. METHODS: Parents and primary caregivers (N = 27) of children with SCA (ages 0-12) completed individual semi-structured qualitative interviews exploring links between caregivers' decision-making and both daily and ongoing SCA management practices. Data were transcribed verbatim, cleaned, systematically coded, and analyzed using applied thematic analysis. RESULTS: Participating caregivers were primarily Black or African American (88.9%), mothers (81.5%), publicly insured (55.6%), and single (51.9%). Caregivers described medical decision-making across acute symptom response, preventive disease management, and treatment initiation and/or discontinuation. Across these contexts of disease management, caregivers overarchingly prioritized protecting and improving their child's quality of life. Caregivers' medical decision-making processes were influenced by their SCA management experience, acquisition of SCA knowledge, and trust in medical providers. The extent to which these influences impacted caregivers' decision-making varied based on disease severity, disease management experience, and time since diagnosis. DISCUSSION: Findings highlight how processes underlying caregivers' decision-making are directly influenced and informed by caregivers' lived experiences. Future work should develop provider-initiated collaborative interventions to support medical decision-making.
RESUMO
Study objectives were to compare differences in quality of life (QOL) and family quality of life (FQOL) between compound and noncompound caregivers and describe how career-related dimensions influence the global FQOL. Examination of survey data from 77 compound and 113 noncompound caregivers indicated that compound caregivers had lower QOL, global FQOL, and worse career outcomes than noncompound caregivers. Global FQOL was associated with greater career satisfaction, higher income, and noncompound caregiver type. For compound caregivers, global FQOL was associated with more career opportunities and positive perceptions of career stability. These findings have implications for supporting career pursuits of family caregivers.
RESUMO
BACKGROUND: Following the successful completion of feasibility and acceptability studies of internet-delivered self-help Acceptance and Commitment Therapy for family carers of people with dementia (iACT4CARERS), a full-scale randomised controlled trial (RCT) evaluating its clinical and cost effectiveness will be conducted. This paper describes the design and protocol for a multi-site, parallel, single-blind, 2-arm RCT evaluating the clinical and cost effectiveness of iACT4CARERS plus treatment-as-usual (TAU) in comparison to TAU alone for reducing anxiety in family carers of people with dementia. METHODS: 496 family carers aged ≥18 years, who are caring for a person with dementia, will be recruited from national healthcare services, general practices and community groups in England. Participants randomised to the intervention arm will receive iACT4CARERS over 12 weeks. Participants will complete outcome measures at baseline (0 weeks) and at 12-weeks and 24-weeks post-randomisation. The primary outcome and timepoint will be anxiety at 12 weeks. Secondary outcomes will include psychological flexibility, depression, and cost-effectiveness (cost per quality adjusted life years). Primary analyses will be by intention-to-treat and data will be analysed using linear mixed models. Fidelity and quality of implementation will be assessed and contextual factors associated with variation in outcomes identified in a process evaluation. CONCLUSION: If iACT4CARERS is found to be effective and affordable, this self-help intervention, including minimal contact with minimally trained therapists, has the potential to be rolled out widely within healthcare services in the UK, reducing inequality in access to psychological services among this population. CLINICAL TRIALS REGISTRATION: ISRCTN registry identifier ISRCTN45995725.
RESUMO
Pediatric mental health needs are currently on the rise across all levels of care. The COVID-19 pandemic accentuated concerns within our mental health system, not only for those requiring care, but also for care providers. One particular area of concern is access to care for those that require acute care or crisis stabilization (eg, emergency department visits or stays on crisis stabilization units). The Attachment, Regulation, and Competency (ARC) approach, a flexible trauma-informed treatment framework, provides equitable and effective treatments for youth as well as systems to support health care professionals caring for these youth. Trauma-informed care, particularly that which incorporates restorative practices, increases equity for racially and ethnically minoritized youth and informs the creation of upstream, midstream, and downstream policy interventions.
Assuntos
COVID-19 , Tratamento Domiciliar , Humanos , Criança , Adolescente , Serviços de Saúde Mental/normas , Apego ao Objeto , Hospitalização , Transtornos Mentais/terapia , Trauma Psicológico/terapiaRESUMO
Background: People from South Asian communities are under-represented at all levels of dementia services. Consequently, there is pressure for the statutory sector to deliver services in partnership with Voluntary, Community, Faith and Social Enterprises (VCFSEs). This study set out to explore the constraints to effective partnership working which prevent dementia care from being delivered in an equitable way.Methods: Data collection consisted of two phases. First, we interviewed seven people with experience of partnership working and developed three fictional vignettes that were representative of the challenges they faced. We then used these vignettes to stimulate discussion in focus groups and interviews with 13 VCFSE and 16 statutory sector participants. Data was analysed using deductive thematic analysis.Findings: Three themes were developed during the analysis. First, White British-centric services focused on the challenges for statutory services in meeting the needs of South Asians, developing flexible, responsive services and making inclusive partnership working truly meaningful. Second, VCFSE participants (but not statutory service participants) associated a failure to deliver effective partnership working with unconscious bias operating within systems, leading to the devaluing of their expertise and to their views being ignored. Finally, participants emphasised the need to prioritise relationships if they were to meet the challenges of developing partnership working.Conclusion: We identified three constraints acting to prevent effective partnership working. First, the different meanings that statutory and VCFSE participants attach to challenges threatens their ability to develop a shared understanding of the needs of communities. Second, a reluctance to explicitly address service deficiencies can mean that stereotypes remain unaddressed. Finally, while both parties lacked power to change the fundamentals of service delivery, power and resources were also unbalanced with VCSFE services being more reliant on the statutory sector.
RESUMO
BACKGROUND: Due to rapid increases in the number of Korean people with dementia, dementia has become a priority health issue in South Korea. Likewise, the well-being of family caregivers of people with dementia has also become an issue of concern. However, little is known about the resilience of Korean family caregivers because there is a lack of review studies from a Korean cultural perspective about the resilience of family caregivers of people with dementia. OBJECTIVES: The purpose of this scoping review was to investigate quantitative studies related to resilience theories, measurement instruments, correlates and resilience interventions for family caregivers of people with dementia. METHOD: This review was conducted according to the Joanna Briggs Institute based on Arksey and O'Malley. Nine databases were searched to retrieve evidence published in English or Korean between January 2000 and September 2022. Studies with a quantitative research design reporting the resilience of family caregivers of people with dementia based on a resilience theory framework were included. RESULTS: A total of 13 studies were included in this review. All studies used either a modified McCubbin and McCubbin's family stress, adjustment and adaptation model or Walsh's family resilience model. All resilience instruments were used without cross-cultural adaptation. Family adaptation, social support, life satisfaction, family (di)stress and caregiver burden were associated with resilience among family caregivers. A few family resilience-enhancing programmes showed a positive effect on caregiver resilience. CONCLUSION: This review noted that all the resilience measures documented in this study need to test for cultural adaptation in a Korean context. Further research is required to develop and implement family-based, culturally tailored interventions to effectively enhance Korean resilience for family caregivers of people with dementia. IMPLICATIONS FOR PRACTICE: Gerontological nurses should include Korean family caregivers in their nursing care and assess whether family caregivers have depression or suicidal thoughts to promote better health outcomes for caregivers and their family members.
Assuntos
Cuidadores , Demência , Resiliência Psicológica , Humanos , Cuidadores/psicologia , Demência/enfermagem , Demência/etnologia , República da Coreia/etnologia , Adaptação Psicológica , Apoio Social , Família/psicologiaRESUMO
AIM: To evaluate whether Preparedness Assessment for the Transition Home (PATH), a validated instrument assessing gaps in caregiver commitment and capacity to care for a patient with a disabling condition, would be helpful to identify gaps in preparing primary caregivers of patients with glioblastoma multiforme (GBM). DESIGN: A descriptive survey design with quantitative and qualitative data. METHODS: Former primary caregivers of patients with GBM were invited to complete a 17-question online survey during February and March 2023. Former caregivers, each having completed their caregiver journeys, are able to offer a unique perspective across the illness trajectory. Participants reviewed a copy of the PATH instrument and (a) responded to questions rating PATH helpfulness at each stage of the illness trajectory and (b) provided open-ended feedback on the instrument. RESULTS: One hundred seventeen of the 124 participants reported the PATH instrument would be helpful across all stages of the illness trajectory. While there were no statistically significant differences across the illness phases, response trends indicated using the PATH instrument earlier in the illness trajectory would have been more helpful to them as caregivers. Qualitative thematic analysis feedback indicated the most significant gap caregivers faced was education on the effects of the illness and treatment. CONCLUSION: It is vitally important to prepare and support caregivers. A validated instrument can identify unmet needs and inform care decisions. IMPLICATIONS FOR THE PROFESSION: Patient discharge plans should be guided by the needs and preferences of patients and caregivers. Identifying gaps in education and preparedness early in the illness trajectory may inform the care team of unmet needs, allowing them to tailor resources and support to improve outcomes for patients with GBM and their caregivers. IMPACT: Patient discharge plans should be guided by the needs and preferences of patients and caregivers. Identifying gaps in education and preparedness early in the illness trajectory may inform the care team of unmet needs, allowing them to tailor resources and support to improve outcomes for patients with GBM and their caregivers. PATH has the potential to inform healthcare professionals to develop customised care plans including education, resources and support for caregivers and patients with life-threatening illness. REPORTING METHOD: Study adheres to the STROBE reporting method. PATIENT OR PUBLIC CONTRIBUTION: Prior to deploying the survey to study participants, in addition to testing by study collaborators (authors), the survey was tested and feedback was received from graduate students and from administrators of the private Facebook group where the survey was promoted to study participants.
RESUMO
AIM: To investigate the association of long-term care nursing assistants' dual caregiving roles with mental health and to determine whether social support moderates this relationship. DESIGN: A cross-sectional survey. METHODS: We surveyed 962 certified long-term care nursing assistants working in long-term care and medical facilities across Taiwan from October 2022 to July 2023. 'Dual caregiving roles' denote the fulfilment of caregiving duties both at work and within families. Mental health was evaluated using the 5-item Brief Symptom Rating Scale. Logistic regression analysis was utilized to investigate the association of dual caregiving roles and psychological job demands with poor mental health. Moreover, we explored whether family, colleague, and supervisor support moderated the association between dual caregiving roles and poor mental health. RESULTS: Among long-term care nursing assistants, 15% had dual caregiving responsibilities. Individuals with both dual caregiving roles and high psychological job demands faced the highest risk of poor mental health compared to those without dual caregiving roles and low psychological job demands. Having dual caregiving roles was associated with poor mental health compared to workers without such roles. Additionally, support from family, colleagues, and supervisors mitigates the association between caregivers' dual caregiving roles and poor mental health. CONCLUSION: A substantial proportion of long-term care nursing assistants had dual caregiving roles, leading to an additional mental health burden when combined with high psychological job demands. High social support attenuated this association. IMPLICATIONS FOR THE PROFESSION: Long-term care nursing assistants with dual caregiving roles had poorer mental health outcomes. Yet, support from family, colleagues, and supervisors mitigated these effects. These results emphasize the importance of enhancing social support to protect the mental well-being of long-term care nursing assistants managing both formal and informal caregiving duties. REPORTING METHOD: This study adheres to the STROBE guideline of reporting. PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution.