Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 27
Filtrar
1.
Top Stroke Rehabil ; : 1-10, 2024 Aug 14.
Artículo en Inglés | MEDLINE | ID: mdl-39140651

RESUMEN

OBJECTIVES: The purpose of this study was to assess the effects of family resilience, caregiver needs, and caregiver readiness on benefit finding for family caregivers of patients with stroke and to examine the mediating role of caregiver needs and caregiver readiness between family resilience and benefit finding. METHODS: In this cross-sectional study, convenience sampling was designed and used to recruit participants from three general hospitals in Jinan, Shandong Province, China, from February to September 2022, in which 340 participants completed the General Information Questionnaire, Chinese version of the Family Resilience Assessment Scale (C-FRAS), Caregiver Needs Assessment Scale (CNAS) Chinese version of the Caregiver Preparedness Scale (C-CPS), and Caregiver Benefit Finding Scale (CBFS). Model 6 in process version 4.0 was used to test the chain mediation model between family resilience and benefit finding for caregiver needs and caregiver readiness. RESULTS: Correlation analysis showed that benefit finding in family caregivers was positively associated with family resilience and caregiver readiness and negatively associated with caregiver needs; mediation model tests showed that the total indirect effect of family resilience on benefit finding was 0.163, with the specific mediating effects of caregiver needs and caregiver readiness accounting for 33.74% and 59.51%, and the chain mediating effect of both accounting for 6.75%. CONCLUSIONS: Family resilience not only directly influences benefit finding for family caregivers but also indirectly affects benefit finding through caregiver needs and caregiver readiness. Caregiver needs and caregiver readiness have a mediating role between family resilience and benefit finding in family caregivers.

2.
J Med Internet Res ; 25: e46858, 2023 12 13.
Artículo en Inglés | MEDLINE | ID: mdl-38090796

RESUMEN

BACKGROUND: Caregiving can affect people of all ages and can have significant negative health impacts on family caregivers themselves. Research has shown that social support acts as a buffer against many negative health impacts. A common source of social support is support groups. Although traditionally, these groups were conducted in a face-to-face setting, the advent of the internet, social media applications, and the smartphone have seen online support groups (OSGs) develop as a space where many caregivers seek support. The number of OSGs has increased exponentially, but there is no clear consensus on what factors or characteristics of OSGs contribute to social support development within them or what types of OSGs are available to family caregivers. OBJECTIVE: This study aimed to conduct a scoping review to contribute to the understanding of the types and characteristics of OSGs for family caregivers. METHODS: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines, the CINAHL, PsychInfo, Psych Articles, Social Sciences, Communication Source, Medline, and Web of Science databases were searched for studies (caregiver focused, adults aged 18 years or older, online social support groups, caring for a living person, peer-reviewed journal publications on empirical research). In total, 19 studies were included in the review. The research questions were (1) what type of social support groups are online for adult family caregivers, (2) what the communication mediums and characteristics of these OSGs are, and (3) what psychosocial or other factors make OSGs successful or unsuccessful for participants. RESULTS: In response to the first research question, we found that the majority of OSGs took place on public text-based forums and were illness specific. Where demographics were reported, participants were predominately women, White, and working with university-level education. There were a variety of caregiving relationships. For the second research question, the most common communication medium found was text-based communication, with the use of emojis, photos, and GIF (Graphics Interchange Format) files as part of these exchanges. Most frequently, the OSGs were asynchronous with a degree of anonymity, not time-limited by the frequency of contact or duration, and moderated by peer or professional moderators or facilitators. Results for the third research question explored the overarching categories of safe communication and engagement and group management. These described successful OSGs as having a focus on similar others with shared lived experiences communicated in a nonjudgmental space overseen by trained peer or professional facilitators. CONCLUSIONS: There are several key considerations for OSGs to be successful for family caregivers. A general recommendation for practitioners is to give importance to building active moderation and multifaceted structures of support to meet different levels of caregiver needs and the ability to engage.


Asunto(s)
Cuidadores , Grupos de Autoayuda , Adulto , Humanos , Femenino , Cuidadores/psicología , Apoyo Social , Servicios de Salud , Comunicación , Familia/psicología
3.
Soc Work Public Health ; 38(5-8): 359-372, 2023 Nov 17.
Artículo en Inglés | MEDLINE | ID: mdl-37740894

RESUMEN

The authors aimed to assess the impact of a family caregiver support intervention on caregiver burden and hospital readmission before and during the COVID-19 pandemic. By adopting a quasi-experimental design with no randomization, caregivers (n = 65) received a 90-day home visitation caregiver support intervention before the COVID-19 pandemic and caregivers (n = 41) received a 90-day phone-only visitation caregiver support intervention during the COVID-19 pandemic. Caregiver burden was collected in a survey, and hospital readmission of the care recipient was collected by hospital data. The results of a repeated-measures ANOVA demonstrated that participants of a family caregiver support intervention during the COVID-19 pandemic improved their caregiver burden statistically significantly more than those who received the intervention before the pandemic. There were no significant differences in hospital readmissions before or during the COVID-19 pandemic. The study demonstrates the efficacy of family caregiver support interventions over the phone during a pandemic.


Asunto(s)
COVID-19 , Cuidadores , Humanos , Pandemias , Familia , Readmisión del Paciente
4.
Curr Neurol Neurosci Rep ; 23(11): 645-656, 2023 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-37751050

RESUMEN

PURPOSE OF REVIEW: While the benefits of palliative care for patients with cancer are well established, palliative care in neuro-oncology is still in its early stages. However, in recent years, there has been increasing attention drawn to the need for better palliative care for patients with brain tumors. RECENT FINDINGS: There is a growing body of literature demonstrating the high symptom burden and significant supportive care and information needs of these patients and their caregivers. In the area of caregiver needs, the last 3 years has seen a more rapid growth in recognizing and characterizing these needs. However, there remains a knowledge gap regarding the optimal means of addressing these needs. In this article, we outline important recent advances in the literature on palliative care for patients with brain tumors and highlight areas in need of greater attention and investigation.


Asunto(s)
Neoplasias Encefálicas , Cuidados Paliativos , Humanos , Calidad de Vida , Neoplasias Encefálicas/terapia , Cuidadores
5.
Neurooncol Pract ; 10(3): 271-280, 2023 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-37188166

RESUMEN

Background: Most primary brain tumor patients rely on family caregivers for support. Caregiving can be rewarding, but also leads to significant burden from unmet needs. We aimed to: (1) identify and characterize caregivers' unmet needs; (2) determine associations between unmet needs and wish for support; (3) evaluate acceptability of the Caregiver Needs Screen (CNS) and perceived feasibility in clinical practice. Methods: Family caregivers of primary brain tumor patients were recruited from outpatient clinics and asked to complete an adapted version of the CNS consisting of 33 common issues caregivers report (item scale 0-10), and the wish for support (yes/no). Participants ranked acceptability and feasibility (item scale 0-7; higher scores being positive) of the adapted CNS. Descriptive and non-parametric correlational analyses were applied. Results: Caregivers (N = 71) reported 1-33 unmet caregiving needs (M = 17.20, sd = 7.98) but did not always wish for support (range 0-28, M = 5.82, sd = 6.96). A weak correlation was found between total number of unmet needs and wish for support (r = 0.296, P = .014). Most distressing items were patients' changes in memory/concentration (M = 5.75, sd = 3.29), patients' fatigue (M = 5.58, sd = 3.43), and signs of disease progression (M = 5.23, sd = 3.15).Caregivers most often wished support with recognizing disease progression (N = 24), and least often with managing spiritual issues (N = 0). Caregivers evaluated acceptability and feasibility of the CNS tool positively (mean scores ranged 4.2-6.2). Conclusions: Family caregivers experience distress resulting from many neuro-oncology specific needs, but this is not directly related to wish for support. Family caregiver needs screening could be useful to tailor support to suit their preferences in clinical practice.

6.
Patient Educ Couns ; 114: 107811, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37244131

RESUMEN

OBJECTIVE: Palliative care encounters often involve empathic opportunities conveyed by patients and their care partners. In this secondary analysis, we examined empathic opportunities and clinician responses with attention to how presence of multiple care partners and clinicians shapes empathic communication. METHODS: We used the Empathic Communication Coding System (ECCS) to characterize emotion-focused, challenge-focused, and progress-focused empathic opportunities and responses in 71 audio-recorded palliative care encounters in the US. RESULTS: Patients expressed more emotion-focused empathic opportunities than did care partners; care partners expressed more challenge-focused empathic opportunities than did patients. Care partners initiated empathic opportunities more frequently when more care partners were present, though they expressed fewer as the number of clinicians increased. When more care partners and more clinicians were present, clinicians had fewer low-empathy responses. CONCLUSION: The number of care partners and clinicians present affect empathic communication. Clinicians should be prepared for empathic communication focal points to shift depending on the number of care partners and clinicians present. PRACTICE IMPLICATIONS: Findings can guide development of resources to prepare clinicians to meet emotional needs in palliative care discussions. Interventions can coach clinicians to respond empathically and pragmatically to patients and care partners, particularly when multiple care partners are in attendance.


Asunto(s)
Cuidadores , Empatía , Humanos , Cuidados Paliativos , Grabación en Cinta , Comunicación
7.
J Palliat Care ; 38(3): 316-325, 2023 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-36972511

RESUMEN

Objective: Family caregivers (FCGs) of persons with primary brain tumors (PBTs) report high levels of distress related to concerns about out-of-hospital seizures. This study aims to explore their experiences and needs with seizure management. Methods: Semi-structured interviews were held with 15 FCGs of persons with PBTs, both those who have and those who have not experienced a seizure, to elicit their concerns about out-of-hospital seizure management and related information needs. A qualitative descriptive study using thematic analysis was conducted based on interview data. Results: Three primary themes were identified relative to FCG experiences and needs related to care of PBTs patients, especially seizure management: (1) FCGs' experiences with caring for persons with PBTs; (2) FCGs' educational needs for seizure preparation and resources; and (3) FCGs' desired type of educational resources and information about seizures. Often FCGs were reported being fearful of seizures and nearly all expressed difficulty knowing when to call emergency services. FCGs equally desired written and online resources, and most preferred graphics or videos detailing seizures. Most FCGs thought that seizure-related training should come after rather than at the time of PBTs diagnosis. FCGs of patients who have not experienced seizures were significantly less prepared to manage seizures than those with a prior seizure. Conclusions: Recognizing and managing out-of-hospital seizures can be a difficult and distressing task for FCGs of patients with PBTs and seizure-related resources are needed. Our results suggest that FCGs of care recipients with PBTs need early supportive interventions to provide self-care strategies and problem-solving skills to manage their roles as caregivers. Interventions should include educational components to assist them in understanding the best mechanisms to maintain a safe environment for their care recipients, and those that deepen knowledge about when to contact EMS.


Asunto(s)
Neoplasias Encefálicas , Cuidadores , Humanos , Investigación Cualitativa , Neoplasias Encefálicas/complicaciones , Neoplasias Encefálicas/terapia , Convulsiones/terapia , Hospitales
8.
Front Neurol ; 13: 996620, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36212650

RESUMEN

Introduction: Informal caregivers play a crucial role in supporting the activities of daily living, rehabilitation, and the road to recovery for stroke survivors. However, these informal caregivers are often reported as experiencing neglect and lack of recognition despite their primary contribution to stroke recovery. This study investigated the experiences of the caregivers of stroke survivors and access to stroke care in Malaysia. Method: This qualitative study with a phenomenological approach utilized in-depth interviews, including ten primary caregivers, one formal caregiver, and stroke healthcare providers as the participants. The interviews were done until the data saturation was achieved, and the data was analyzed using thematic analysis. Result: Three primary themes and 14 subthemes were identified from the interviews. The role of primary caregivers of stroke survivors had tremendous physical, mental and social impact on the caregivers. Caregivers had two primary needs. The need for information about comprehensive stroke care at home and the need for psychological support to themselves. The key internal driver for providing care was identified to be the motivation level of the stroke survivor and the external driver was identified to be the societal support with access to comprehensive stroke care. Conclusion: The role of informal caregivers becomes critical for continuum of stroke care. As caregivers take up the roles and responsibilities of those who contribute to stroke rehabilitation single-handedly soon after hospital discharge. Results of this study highlights the needs for providing systematic support to caregivers for engaging them in effective stroke care, particularly in the community. Stroke service providers, policy makers and program planners must be sensitized to empower caregivers of stroke survivors in effectively supporting stroke survivor in their family on the road of recovery.

9.
Health Soc Care Community ; 30(6): 2353-2361, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-35302267

RESUMEN

Known barriers prevent informal caregivers of a person with dementia using community services; however, there is a dearth of knowledge on how organisations can overcome these barriers. This study examined caregivers' perceptions of the barriers and facilitators of service use with regards to their membership to one Alzheimers organisation and their recommendations for improvements. In-depth interviews were conducted with 19 informal caregivers. Thematic analysis revealed personal and organisational barriers to service use, and associated recommendations. Six recommendations were made for dementia service organisations: (a) be proactive and arrange regular scheduled meetings with clients; (b) utilise consistent, trusting, empathic support personnel who can build strong relationships with clients; (c) provide support groups; (d) tailor support; (e) ensure expert knowledge and numerous channels of information delivery to clients, the general public and health professionals and (f) actively promote the organisation and services offered. This study provides novel insights into how a community organisation can overcome client barriers to service use. In addition, the study reveals caregivers perceived value of an Alzheimers organisation, argued to be an essential service, but until now clients' perceptions of the value received have not been explored.


Asunto(s)
Cuidadores , Demencia , Humanos , Demencia/terapia , Apoyo Comunitario , Grupos de Autoayuda , Bienestar Social
10.
Int J Nurs Knowl ; 33(1): 5-17, 2022 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-33729703

RESUMEN

PURPOSE: To provide guidance to nurses caring for families with COVID-19, we developed linkages using interoperable standardized nursing terminologies: NANDA International (NANDA-I) nursing diagnoses, Nursing Interventions Classification (NIC), and Nursing Outcomes Classification (NOC). In addition, we wanted to identify gaps in the terminologies and potential new nursing diagnoses, outcomes, and interventions for future development related to nurse roles in family care during a pandemic. METHODS: Using a consensus process, seven nurse experts created the linkages focused on families during the COVID-19 pandemic using the following steps: (1) creating an initial list of potential nursing diagnoses, (2) selecting and categorizing outcomes that aligned with all components of each nursing diagnosis selected, and (3) identifying relevant nursing interventions. FINDINGS: We identified a total of seven NANDA-I nursing diagnoses as the basis for the linkage work. These are distributed in three NANDA-I Domains and based in the psychosocial dimension of the Nursing Care in Response to Pandemics model. Eighty-nine different NOC outcomes were identified to guide care based on the nursing diagnoses, and 54 different NIC interventions were suggested as possible interventions. Fifteen new proposed concepts were identified for future development across the three classifications. CONCLUSIONS: The linkages of nursing diagnoses, outcomes, and interventions provide a guide to enhance nursing practice and care documentation that could quantify the impact of nursing care to patient outcomes for families at risk for or infected by COVID-19. IMPLICATIONS FOR NURSING PRACTICE: NANDA-I, NOC, and NIC linkages identified in this paper provide resources to support clinical decisions and guide critical thinking for nurses encountering care needs of families with COVID-19. Documentation of these linkages provides data that can create new knowledge to enhance the care of families impacted by COVID-19.


Asunto(s)
COVID-19 , Terminología Normalizada de Enfermería , Humanos , Diagnóstico de Enfermería , Pandemias , SARS-CoV-2
11.
Front Psychiatry ; 12: 739776, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34616323

RESUMEN

Previous research on the needs of family cancer caregivers (FCCs) have not elucidated associations between specific caregiving needs. Network analysis, a statistical approach that allows the estimation of complex relationship patterns, helps facilitate the understanding of associations between needs and provides the opportunity to identify and direct interventions at relevant and specific targets. No studies to date, have applied network analysis to FCC populations. The aim of the study is to explore the network structure of FCC needs in a cohort of caregivers in Singapore. FCCs (N = 363) were recruited and completed a self-report questionnaire on socio-demographic data, medical data on their loved ones, and the Needs Assessment of Family Caregivers-Cancer scale. The network was estimated using state-of-the-art regularized partial correlation model. The most central needs were having to deal with lifestyle changes and managing care-recipients cancer-related symptoms. The strongest associations were between (1) having enough insurance coverage and understanding/navigating insurance coverage, (2) managing cancer-related pain and managing cancer-related symptoms, (3) being satisfied with relationships and having intimate relationships, and (4) taking care of bills and paying off medical expenses. Lifestyle changes, living with cancer, and symptom management are central to FCCs in Singapore. These areas deserve special attention in the development of caregiver support systems. Our findings highlight the need to improve access to social and medical support to help FCCs in their transition into the caregiving role and handle cancer-related problems.

12.
J Appl Res Intellect Disabil ; 34(6): 1468-1476, 2021 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-34124823

RESUMEN

BACKGROUND: Adults with intellectual and developmental disabilities and their families have high need for support services. This study assessed resource utilization among caregivers of intellectual and developmental disabilities and other conditions. METHODS: We assessed 366 caregivers of adults with intellectual and developmental disabilities, dementia or other conditions Regressions assessed group differences in number of agency contacts and frequency of service use. A secondary analysis assessed reasons for underutilization of services. RESULTS: Caregivers of individuals with dementia contacted twice as many agencies as other caregivers and were more likely to report using suggested services. Agency contact and service utilization were similar among caregivers of adults with intellectual and developmental disabilities compared to other caregivers. Caregivers of adults with intellectual and developmental indicated that suggested services were unavailable to them. CONCLUSION: The findings of this study shed light on challenges with access to and utilization of support services.


Asunto(s)
Demencia , Discapacidad Intelectual , Adulto , Cuidadores , Humanos
13.
BMC Palliat Care ; 20(1): 26, 2021 Feb 04.
Artículo en Inglés | MEDLINE | ID: mdl-33541334

RESUMEN

BACKGROUND: A key aim of palliative care is to improve the quality of life of patients and their families. To help ensure quality of life for the families of patients with migrant backgrounds, this study sought insights into the dignity of informal caregivers in migrant communities. This could improve understanding of family-centered care for migrant patients. METHODS: Twenty semi-structured interviews with informal caregivers of Turkish, Moroccan, or Surinamese background living in the Netherlands were analyzed thematically. RESULTS: The dignity of the patient and that of their informal caregivers were found to be strongly interrelated. Most important for the dignity of caregivers was ensuring good care for their patients and preserving the patients' dignity. Ensuring good care involved advocating for good and dignified care and for satisfaction of a patient's wishes. For many informal caregivers, it also included delivering care to the patient by themselves or together with other family members, despite having to give up part of their own lives. Providing care themselves was part of maintaining a good relationship with the patient; the care was to cater to the patient's preferences and help preserve the patient's dignity, and it could be accompanied by valuable aspects such as times for good conversations. Positive interaction between an informal caregiver and a patient positively influenced the informal caregiver's dignity. Informal caregiver and patient dignity were often compromised simultaneously; when informal caregivers felt healthcare professionals were undermining a patient's dignity, their own dignity suffered. According to informal caregivers, healthcare professionals can help them preserve dignity by taking seriously their advice about the patient, keeping them informed about the prognosis of the disease and of the patient, and dealing respectfully with differences in values at the end of life. CONCLUSION: The dignity of migrant patients' informal caregivers in the last phase of a patient's life is closely entwined with ensuring good care and dignity for the patient. Healthcare professionals can strengthen the dignity of informal caregivers by supporting their caregiving role.


Asunto(s)
Cuidadores , Migrantes , Humanos , Investigación Cualitativa , Calidad de Vida , Respeto
14.
SAGE Open Nurs ; 7: 23779608211029073, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-35155770

RESUMEN

INTRODUCTION: The dementia disease affects both the family caregivers' health and social and psychological well-being. The aim of this review was to identify and describe the needs of family caregivers living with a person with dementia at home. METHOD: The literature review, conducted using the matrix method, was also inspired by Thomas and Harden's thematic synthesis. RESULTS: Three themes were identified: (1) the family caregiver's new roles and relationships; (2) caregiver burdens; and (3) the caregiver's need for information and support. CONCLUSION: When family caregivers gradually lose their reciprocal relationship with the person with dementia, and sometimes also with family and friends, the need for other kinds of social contact arises e.g. with others in a similar situation. They also need to have some respite to provide room to pursue their own interests and take care of their own health. Also, a high level of individually tailored information is needed.

15.
Dementia (London) ; 20(2): 613-632, 2021 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-32050779

RESUMEN

BACKGROUND: Persons with dementia use emergency department services at rates greater than other older adults. Despite risks associated with emergency department use, persons with dementia and their caregivers often seek emergency services to address needs and symptoms that could be managed within primary care settings. As emergency departments (EDs) are typically sub-optimal environments for addressing dementia-related health issues, facilitating effective primary care provision is critical to reduce the need for, or decision to seek, emergency services. The aim of this study is to explore how features of primary care practice influence care-seeking decisions by community-dwelling persons with dementia and familial caregivers. METHODS: Semi-structured qualitative interviews were conducted with 27 key dementia-care stakeholders (10 primary care/geriatrics providers, 5 caregivers, 4 emergency medicine physicians, 5 aging service providers, and 3 community paramedics) from multiple health systems. Transcripts from audio recordings were analyzed using a thematic analysis framework to iteratively code and develop emergent themes. Features of primary care were also synthesized into lists of tangible factors leading to emergency care-seeking and those that help prevent (or decrease the need for) ED use. FINDINGS: Stakeholders identified eight categories of features of primary care encompassing the clinical environment and provision of care. These collapsed into four major themes: (1) clinic and organizational features-including clinic structure and care team staffing; (2) emphasizing proactive approaches to anticipate needs and avoid acute problems-including establishing goals of care, preparing for the future, developing provider-patient/provider-caregiver relationships, and providing caregiver support, education, and resources to help prevent emergencies; (3) health care provider skills and knowledge of dementia-including training and diagnostic capabilities; and (4) engaging appropriate community services/resources to address evolving needs. CONCLUSIONS: Features of primary care practice influence decisions to seek emergency department care at the system, organizational/clinic, medical, and interpersonal levels, particularly regarding proactive and reactive approaches to addressing dementia-related needs. Interventions for improving primary care for persons with dementia and their caregivers should consider incorporating features that facilitate proactive family-centered dementia care across the four identified themes, and minimize those leading to caregiver decisions to utilize emergency services.


Asunto(s)
Demencia , Servicios Médicos de Urgencia , Anciano , Cuidadores , Urgencias Médicas , Servicio de Urgencia en Hospital , Femenino , Humanos , Masculino , Atención Primaria de Salud , Investigación Cualitativa
16.
Can J Aging ; 40(2): 331-343, 2021 06.
Artículo en Inglés | MEDLINE | ID: mdl-32515318

RESUMEN

This study explored family caregivers' use of technology to care for people with dementia living at home. Three questions were pursued: (1) what are the important, unmet needs of family caregivers, (2) how do they use technologies to assist in care tasks, and (3) what do health care providers know about caregivers' needs and technology use? Two comprehensive surveys were developed to answer these questions: one for family caregivers (n = 33), and one for health care providers (n = 60). Descriptive and quantitative analyses showed that caregivers' important, unmet needs were in the domains of information, formal services, and emotional support. Caregivers make limited use of technology but believe in its potential usefulness. Health care providers agree that technology is useful in dementia care; however, they underestimate caregivers' willingness to adopt technologies to communicate with providers. Findings prove caregiver willingness to use technology to support their care role and provide guidance regarding the caregiver needs that these technologies should address.


Asunto(s)
Cuidadores , Demencia , Humanos , Encuestas y Cuestionarios , Tecnología
17.
BMC Psychol ; 8(1): 84, 2020 Aug 12.
Artículo en Inglés | MEDLINE | ID: mdl-32787927

RESUMEN

BACKGROUND: The Needs Assessment of Family Caregivers- Cancer (NAFC-C) scale is shown to have adequate psychometric properties in assessing family caregiver needs during the cancer journey and its psychometric properties have been studied only in Western populations. This study sought to validate the NAFC-C in an Asian population for wider applicability. METHODS: Participants (n = 363) completed questions on sociodemographics, the Depression Anxiety Stress Scale, the Zarit Burden Interview, the Caregiver Quality of Life Index-Cancer scale, and the NAFC-C. RESULTS: Results revealed good internal consistency, test-retest reliability, and concurrent validity of the NAFC-C. Confirmatory factor analysis did not demonstrate a good fit of the NAFC-C in our sample. Exploratory factor analysis revealed a similar factor structure in this study's population. Further reliability and validity analyses with the EFA factor structure demonstrated similar reliability and validity assessments. CONCLUSIONS: The NAFC-C is shown to be applicable in an Asian population. It would be a useful instrument for determining family caregivers' needs and to inform future interventions to address those needs and improve or maintain quality of life in both patients and their caregivers.


Asunto(s)
Cuidadores , Evaluación de Necesidades , Neoplasias , Adulto , Anciano , Anciano de 80 o más Años , Pueblo Asiatico , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/enfermería , Psicometría , Calidad de Vida , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Adulto Joven
18.
BMC Geriatr ; 19(1): 255, 2019 09 18.
Artículo en Inglés | MEDLINE | ID: mdl-31533637

RESUMEN

BACKGROUND: The world is facing many socio-demographic changes, such as an increased average life expectancy and the presence of chronic and non-communicable diseases, which in turn, leads to an enhanced dependency on others. Consequently, the demand for informal caregivers has significantly increased during the past few years. Caring for a dependent person is linked to a series of burdens that often leads to physical, psychological and emotional difficulties. Taking into consideration the difficulties faced by informal caregivers, knowing in which areas of functioning they need more guidance may help to relieve their burden. Therefore, the main goal of this study is to better understand the needs and competencies of the informal caregiver when caring for a dependent person in the different self-care domains. METHODS: This cross-sectional study used a questionnaire administered on a single occasion by face-to-face interview. Descriptive and inferential statistics alongside non-parametric statistical techniques such as the Mann-Whitney test and Spearman's correlation were used. RESULTS: The average age of the 143 informal caregivers is 58 years old, with the youngest in our sample being 21 years of age. Most of them are female, and 50% of them are children taking care of one of their parents. Most of the dependent people are completely dependent in the areas of comfort and hygiene (53.8%) and medication management (55.9%). The female informal caregivers see themselves as having more competencies in sanitary hygiene than the male ones, with no significant differences in their competencies' perception in the other areas of self-care. Older caregivers see themselves as less competent in certain areas of self-care such as feeding, mobility, transfers, medication and symptoms management and communication. Most of the information given to the informal caregiver is about the disease (82.3%) and the medication management (80.4%). There are still a lot of areas of self-care, where no information, or almost none, is given to the informal caregivers. CONCLUSIONS: Before home discharge of a dependent person, it is important to acknowledge the needs and competencies of the informal caregiver, to capacitate them in looking after their relatives, to help decrease their burden and consequently, decrease the number of hospital readmissions.


Asunto(s)
Cuidadores/psicología , Cuidadores/normas , Competencia Clínica/normas , Necesidades y Demandas de Servicios de Salud/normas , Autocuidado/psicología , Autocuidado/normas , Adulto , Anciano , Comunicación , Estudios Transversales , Deambulación Dependiente/psicología , Deambulación Dependiente/normas , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Adulto Joven
19.
J Nurs Meas ; 27(2): 162-176, 2019 08 01.
Artículo en Inglés | MEDLINE | ID: mdl-31511403

RESUMEN

BACKGROUND AND PURPOSE: The informal care demands of primary malignant brain tumor (PMBT) patients include unique issues associated with neurological and cognitive symptoms. Existing caregiver needs questionnaires do not include these disease-specific symptoms, which are particularly distressing. Therefore, we have developed the neuro-oncology Caregiver Needs Screen (CNS) and evaluated its psychometric properties. METHODS: The 32-item instrument was developed based on PMBT caregiver interviews (N = 109) and expert review. The CNS was tested along measures of depression, anxiety, burden, and mastery in 122 PMBT caregivers. Principal components analysis was used to examine item properties and internal structure. Internal consistency reliability and construct validity were assessed. RESULTS: Six subscales were identified with internal consistency ranging between alpha = .653 and .857. Convergent validity was verified by moderate/high correlations between measures of caregiver well-being and CNS scale scores. CONCLUSIONS: Findings provide preliminary evidence of reliability and validity for the CNS. This instrument can be useful when assessing caregivers' needs for supportive care.


Asunto(s)
Adaptación Psicológica , Neoplasias Encefálicas/enfermería , Cuidadores/psicología , Familia/psicología , Necesidades y Demandas de Servicios de Salud , Psicometría/métodos , Estrés Psicológico/psicología , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Análisis de Componente Principal , Ensayos Clínicos Controlados Aleatorios como Asunto , Reproducibilidad de los Resultados
20.
Singapore Med J ; 60(11): 575-582, 2019 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-31044258

RESUMEN

INTRODUCTION: There is an increasing reliance on informal caregivers to continue the care of patients after discharge. This is a huge responsibility for caregivers and some may feel unprepared for the role. Without adequate support and understanding regarding their needs, patient care may be impeded. This study aimed to identify the needs valued by caregivers and if there was agreement between acute care nurses and caregivers in the perception of whether caregiver needs were being met. METHODS: We conducted face-to-face interviews with 100 pairs of acute care nurses and caregivers. Participants were recruited from inpatient wards through convenience sampling. Questionnaires included demographic data of nurses and caregivers, patients' activities of daily living, and perception of caregiver needs being met in six domains of care. Independent t-test was used to compare mean values in each domain, and intraclass correlation coefficient was used to compare agreement in perception. RESULTS: Caregivers valued reassurance the most. Three domains of care needs showed significant differences in perception of caregiver needs being met:reassurance (p = 0.002), honesty and timeliness (p = 0.008), and kindness and genuine care (p = 0.026). There was poor agreement in all six domains of caregiver needs being met between nurses and caregivers. CONCLUSION: Although caregivers valued reassurance the most, there was poor agreement between acute care nurses and caregivers in the perception of caregiver needs being met. Hence, more attention should be paid to the caregiver's needs. Further studies can examine reasons for unmet caregiver needs and interventions to improve support for them.


Asunto(s)
Cuidadores , Evaluación de Necesidades , Enfermeras y Enfermeros , Actividades Cotidianas , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Femenino , Humanos , Pacientes Internos , Satisfacción en el Trabajo , Masculino , Persona de Mediana Edad , Alta del Paciente , Satisfacción Personal , Calidad de la Atención de Salud , Singapur , Encuestas y Cuestionarios , Centros de Atención Terciaria
SELECCIÓN DE REFERENCIAS
DETALLE DE LA BÚSQUEDA
...