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1.
BMC Public Health ; 24(1): 1566, 2024 Jun 11.
Artigo em Inglês | MEDLINE | ID: mdl-38862957

RESUMO

BACKGROUND: Female informal caregivers of older adults experience a higher burden of physical and mental health problems compared to their male counterparts due to the greater intensity of care they provide. This is likely to result in an imbalance in health needs, including health insurance enrollment, between male and female informal caregivers of older adults. However, to date, no study is available on the role of gender in health insurance enrollment among informal caregivers of older adults in Ghana. This study examines the association between gender and health insurance enrollment among informal caregivers of older adults in Ghana. METHODS: Cross-sectional data from the Informal Caregiving, Health, and Healthcare Survey among caregivers of older adults aged 50 years or above (N = 1,853 and mean ages = 39.15 years and 75.08 years of informal caregivers and their care recipients, respectively) in Ghana were analyzed. A binary logit regression model was used to estimate the association between gender and health insurance enrollment. All statistical inferences were made at the 5% significance level. RESULTS: The final Model (3) showed that female informal caregivers were 2.70 times significantly more likely to enrol in a health insurance scheme than their male counterparts (AOR: 2.70, 95% CI: 2.09-3.48, p-value = 0.001). Apart from gender, the results revealed that participants aged 55-64 years (AOR = 2.38, 95%CI: 1.29-4.41, p-value = 0.006), with tertiary education (AOR: 3.62, 95% CI: 2.32-5.66, p-value = 0.001) and living with the care recipients (AOR: 1.50, 95% CI: 1.14-1.98, p-value = 0.003) were significantly more likely to enrol in a health insurance scheme than their counterparts. The findings further showed that those who earned between GH¢1000 and 1999 (US$99.50-198.50) monthly (AOR: 0.70, 95% CI: 0.52-0.95, p-value = 0.022) and were affiliated with African traditional religion (AOR: 0.30, 95%CI: 0.09-0.99, p-value = 0.048) were significantly less likely to enrol in a health insurance scheme than their counterparts. CONCLUSION: Gender was a significant predictor of health insurance enrollment among informal caregivers of older adults. This finding contributes to the empirical debates on the role of gender in health insurance enrollment among informal caregivers of older adults. Policymakers need to develop gender-specific measures to address gender gaps in health insurance enrollment among informal caregivers of older adults in Ghana. Such health policies and programs should consider other significant demographic and socioeconomic factors associated with health insurance enrolment among informal caregivers of older adults in Ghana.


Assuntos
Cuidadores , Seguro Saúde , Humanos , Gana , Feminino , Masculino , Cuidadores/estatística & dados numéricos , Cuidadores/psicologia , Pessoa de Meia-Idade , Idoso , Estudos Transversais , Seguro Saúde/estatística & dados numéricos , Adulto , Fatores Sexuais , Pesquisas sobre Atenção à Saúde , Idoso de 80 Anos ou mais
2.
Glob Health Action ; 17(1): 2354009, 2024 Dec 31.
Artigo em Inglês | MEDLINE | ID: mdl-38832537

RESUMO

BACKGROUND: Family interactions, which are always multi-faceted, are complicated further by family members with disabilities. In resource-poor settings, policies and programmes that address the needs of and challenges faced by families are often inaccessible or unavailable. Approximately 13% of the families in Tanzania have at least one member with a disability, yet family-centred research on caring for disabled children and adolescents is scarce in this context. OBJECTIVE: The aim is to explore the needs and challenges faced by families that care for children and adolescents with physical disabilities in the Kilimanjaro Region of north-eastern Tanzania. METHODS: This qualitative study had a constructivist grounded-theory design. In-depth interviews, using a semi-structured interview guide based on the social-capital framework, were conducted with 12 female participants aged between 24 and 80. A conceptual model of family needs, inspired by Maslow's hierarchy of needs, informed the analysis. RESULTS: Challenging needs were grouped into five categories, which were linked to Maslow's hierarchy of needs and related to the central concept of 'adaptive adjustment': (1) 'barely surviving'; (2) 'safety needs in jeopardy'; (3) 'sociocultural protection'; (4) 'self-esteem far beyond reach', and (5) 'dreaming of self-actualisation'. CONCLUSION: Families caring for children and adolescents with physical disabilities in north-eastern Tanzania have needs that extend beyond the available and accessible resources. Families can adjust and adapt by avoiding certain situations, accepting the reality of their circumstances and exploring alternative ways of coping. A sustainable support system, including social networks, is essential for meeting basic needs and ensuring safety.


Main findings: The challenges associated with caring for children and adolescents with disabilities are related to various environmental and social barriers, any of which can significantly impact the wellbeing of all family members.Added knowledge: In the context of a study conducted in north-eastern Tanzania, both nuclear and extended family networks were found to be valuable sources of support for these families.Global health impact for policy and action: Families must take considerable steps to strengthen their sociocultural support systems while, the support of the government and other stakeholders is crucial in addressing the challenges faced by families caring for children and adolescents with disabilities.


Assuntos
Adaptação Psicológica , Crianças com Deficiência , Teoria Fundamentada , Pesquisa Qualitativa , Humanos , Tanzânia , Adolescente , Feminino , Criança , Crianças com Deficiência/psicologia , Adulto , Pessoa de Meia-Idade , Adulto Jovem , Idoso , Entrevistas como Assunto , Família/psicologia , Cuidadores/psicologia , Pessoas com Deficiência/psicologia , Masculino , Necessidades e Demandas de Serviços de Saúde
3.
BMC Prim Care ; 25(1): 204, 2024 Jun 08.
Artigo em Inglês | MEDLINE | ID: mdl-38851670

RESUMO

BACKGROUND: As the U.S. population ages, family members increasingly act as informal caregivers, particularly for minority patients and those with limited English proficiency (LEP). However, physicians often do not identify or engage caregivers until there is a health crisis. This study aims to further our understanding of characteristics associated with having a caregiver present at a primary care visit, and better understand the specific roles family caregivers engage in to support older Chinese and Latino primary care patients. METHODS: Primary care patients were surveyed by telephone in a study of language access and communication. Participants included Chinese and Latino primary care patients (≥ 65 years old) from an academic general medicine practice. We asked patients if anyone was in the room with them during their most recent primary care visit (yes = caregiver accompanied). We asked about caregiving support for various needs, and examined associations of patient and visit characteristics with being accompanied, and frequency of caregiver support roles overall and by caregiver accompaniment. RESULTS: Among 906 participants, 80% preferred a non-English language, 64% were women, 88% had Medicare, and mean age was 76 years (range 65-97). 43% were accompanied to their most recent visit. Speaking English 'not at all' vs. 'very well' was associated with being caregiver accompanied (OR 3.5; 95% CI 1.3-9.7), as was older age ≥ 75 vs. 65-74 (OR 2.7; 95% CI 2.0-3.7). The most common roles being supported by caregivers included: transportation to medical appointments (63%), helping with medical decisions (60%), and talking with the doctor about the patient's medical care (54%). Even among unaccompanied patients, substantial proportions reported caregiver support with medical decisions (45%), talking with the doctor (33%), and medical needs at home (26%). CONCLUSIONS: Opportunities for physicians to engage caregivers who have active support roles may be missed, especially if those caregivers are not present at the visit. Future interventions should aim to help physicians identify which patients have caregivers and for what needs, so they may effectively engage caregivers before a health crisis occurs.


Assuntos
Asiático , Cuidadores , Hispânico ou Latino , Atenção Primária à Saúde , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Fatores Etários , Asiático/psicologia , Cuidadores/psicologia , Barreiras de Comunicação , Necessidades e Demandas de Serviços de Saúde , Hispânico ou Latino/psicologia , Proficiência Limitada em Inglês , Relações Médico-Paciente , Estados Unidos
4.
Sante Publique ; 36(2): 45-56, 2024.
Artigo em Francês | MEDLINE | ID: mdl-38834524

RESUMO

INTRODUCTION: Informal caregivers play a vital role in supporting people with severe mental illness. However, this role can leave informal caregivers with significant unmet needs. The aim of this qualitative study is to identify the extent to which the support offered to informal caregivers in adult psychiatry in French-speaking Switzerland meets their needs. METHOD: Individual semi-structured interviews and focus groups were conducted with informal caregivers, mental health professionals, and service providers. The data were analyzed by theme. RESULTS: The need for assistance and the need for information are two themes identified as prevalent among informal caregivers. Despite a consensus on the need for more support and information, informal caregivers, service providers, and health professionals do not assign the same importance to specific aspects of these themes. Suggestions for improving practices at the institutional, socio-political, and civil-society levels are put forward. Given the diversity of viewpoints on the priority needs of informal caregivers, there is a risk of offering support that only partially corresponds to the difficulties encountered by informal caregivers. CONCLUSIONS: Matching support and needs remains a major challenge. Agreeing on a consensual definition of support and information needs and proposing tailored approaches could make it possible to develop support services that meet the actual needs of informal caregivers.


Assuntos
Cuidadores , Transtornos Mentais , Humanos , Feminino , Suíça , Masculino , Transtornos Mentais/terapia , Pessoa de Meia-Idade , Adulto , Grupos Focais , Necessidades e Demandas de Serviços de Saúde , Apoio Social , Psiquiatria , Avaliação das Necessidades , Pesquisa Qualitativa , Idoso
5.
Psychiatr Pol ; 58(1): 51-62, 2024 Feb 28.
Artigo em Inglês, Polonês | MEDLINE | ID: mdl-38852184

RESUMO

OBJECTIVES: The aim of the study was to estimate the reliability, validity and internal structure of the Polish version of the Zarit Burden Interview scale (ZBI). METHODS: The participants in the study were 504 Polish family caregivers (spouses, parents, children and other family members) of chronically ill patients. The Burnout Scale version for caregivers (SWS) and the Resilience Assessment Questionnaire (KOP-26) were used. RESULTS: The Polish version of the Zarit Burden Interview demonstrated good psychometric properties. Confirmative factor analysis confirmed the presence of a three-factor second-order structure, the model proved to be quite well suited to the data (CFI = 0.941; TLI = 0.931; SRMR = 0.045; RMSEA = 0.061). Also, the results of the theoretical validity analysis proved to be satisfactory. Cronbach's α coefficient for the general result was 0.91; for individual subscales: "Negative image of the patient" - 0.85, "Frustration" - 0.82 and "Losses" - 0.85. CONCLUSIONS: The Polish version of the ZBI scale can be used as a reliable and accurate diagnostic tool to measure the burden among carers of chronically ill people. Qualitative analysis of the response content also allows to identify areas requiring the implementation of activities in the field of psychological support for the surveyed caregivers.


Assuntos
Cuidadores , Psicometria , Humanos , Masculino , Feminino , Cuidadores/psicologia , Polônia , Reprodutibilidade dos Testes , Adulto , Pessoa de Meia-Idade , Doença Crônica/psicologia , Inquéritos e Questionários/normas , Efeitos Psicossociais da Doença , Sobrecarga do Cuidador/psicologia
6.
Int J Geriatr Psychiatry ; 39(6): e6114, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38858800

RESUMO

OBJECTIVE: In Alzheimer's disease (AD), the burden on caregivers is influenced by various factors, including the stage of disease progression and neuropsychiatric symptoms (NPS). To date, there has been limited research examining how patient's premorbid personality could affect this burden. The objective of this study was to investigate the impact of both premorbid personality and NPS in individuals with prodromal to mild AD on their caregivers' burden. METHOD: One hundred eighty participants with prodromal or mild AD drown from the PACO (in French: Personnalité Alzheimer COmportement) cohort were included. Personality was assessed by the Revised NEO Personality Inventory (NEO-PI-R). Neuropsychiatric symptoms were measured with the short version of the Neuropsychiatric Inventory (NPI-Q), and caregiver burden was evaluated with the Zarit burden scale. Relationships between personality, Neuro-Psychiatric Inventory (NPI) scores, and caregiver burden were determined using multivariate linear regressions controlled for age, sex, educational level, and Mini Mental State Examination. RESULTS: The total NPI score was related to increased burden (beta = 0.45; p < 0.001). High level of neuroticism (beta = 0.254; p = 0.003) et low level of conscientiousness (beta = - 0.233; p = 0.005) were associated higher burden. Extraversion (beta = -0.185; p = 0.027) and conscientiousness (beta = -0.35; p = 0.006) were negatively associated with burden. In contrast, neuroticism, openness and agreeableness were not correlated with burden. When adjusted on total NPI score, the relationship between extraversion and conscientiousness didn't persist. CONCLUSION: Our results suggest that premorbid personality of patients with prodromal to mild Alzheimer influence caregivers's burden, with a protective effect of a high level of extraversion and conscientiousness.


Assuntos
Doença de Alzheimer , Personalidade , Sintomas Prodrômicos , Humanos , Doença de Alzheimer/psicologia , Masculino , Feminino , Idoso , Idoso de 80 Anos ou mais , Sobrecarga do Cuidador/psicologia , Pessoa de Meia-Idade , Inventário de Personalidade , Cuidadores/psicologia , Efeitos Psicossociais da Doença , Modelos Lineares , Testes Neuropsicológicos , Escalas de Graduação Psiquiátrica , França
7.
Clin J Oncol Nurs ; 28(3): 241-246, 2024 May 17.
Artigo em Inglês | MEDLINE | ID: mdl-38830256

RESUMO

Moving Beyond Cancer to Wellness is a patient- and caregiver-focused educational outreach event with an inspirational message and lectures that address common concerns among cancer survivors. This event is open to the communi.


Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Sobreviventes de Câncer/psicologia , Neoplasias/enfermagem , Feminino , Masculino , Necessidades e Demandas de Serviços de Saúde , Pessoa de Meia-Idade , Educação de Pacientes como Assunto , Cuidadores/psicologia , Cuidadores/educação
8.
Muscle Nerve ; 70(1): 120-129, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38720616

RESUMO

INTRODUCTION/AIMS: To better understand the disease burden faced by individuals with Duchenne muscular dystrophy (DMD) of all ages and elucidate potential targets for therapeutics, this study determined the prevalence and relative importance of symptoms experienced by individuals with DMD and identified factors associated with a higher disease burden. METHODS: We conducted qualitative interviews with individuals with DMD and caregivers of individuals with DMD to identify potential symptoms of importance to those living with DMD. We subsequently performed a cross-sectional study to assess which symptoms have the highest prevalence and importance in DMD and to determine which factors are associated with a higher disease burden. RESULTS: Thirty-nine individuals, aged 11 years and above, provided 3262 quotes regarding the symptomatic burden of DMD. Two hundred participants (87 individuals with DMD and 113 caregivers) participated in a subsequent cross-sectional study. Individuals with DMD identified limitations with mobility or walking (100%), inability to do activities (98.9%), trouble getting around (97.6%), and leg weakness (97.6%) as the most prevalent and life altering symptomatic themes in DMD. The symptomatic themes with the highest prevalence, as reported by caregivers on behalf of those with DMD for whom they care, were limitations with mobility or walking (90.3%), leg weakness (89.2%), and emotional issues (79.6%). Steroid/glucocorticoid use (e.g., prednisone or deflazacort) was associated with a lower level of disease burden in DMD. DISCUSSION: There are many symptomatic themes that contribute to disease burden in individuals with DMD. These symptoms are identified by both individuals with DMD and their caregivers and have a variable level of importance and prevalence in the DMD population.


Assuntos
Cuidadores , Efeitos Psicossociais da Doença , Distrofia Muscular de Duchenne , Humanos , Distrofia Muscular de Duchenne/psicologia , Distrofia Muscular de Duchenne/epidemiologia , Masculino , Criança , Cuidadores/psicologia , Estudos Transversais , Adolescente , Feminino , Adulto , Adulto Jovem , Pessoa de Meia-Idade
9.
Orphanet J Rare Dis ; 19(1): 203, 2024 May 18.
Artigo em Inglês | MEDLINE | ID: mdl-38760658

RESUMO

BACKGROUND: Activated phosphoinositide 3-kinase delta syndrome (APDS) is an ultra-rare primary immunodeficiency, with only 256 cases reported globally. This study aimed to explore the disease burden of APDS from the perspective of individuals with APDS and their caregivers. METHODS: Qualitative interviews were conducted with healthcare providers (HCPs), individuals with APDS and caregivers, to explore the symptoms and health-related quality of life (HRQoL) impact of APDS. Some individuals and caregivers also completed a narrative account exercise. All interviews were audio recorded and transcribed. Data were analysed using thematic analysis and saturation was recorded. RESULTS: Semi-structured qualitative interviews were conducted with healthcare providers (HCPs), individuals with APDS and caregivers. Individuals and caregivers had the option of completing a narrative account exercise. Six HCPs participated in an interview. Seven participants completed the narrative account exercise (N = 5 caregivers and N = 2 individuals with APDS) and 12 took part in an interview (N = 4 caregivers and N = 8 individuals with APDS). Themes identified from HCPs interviews included symptoms, clinical manifestations, HRQoL impacts and treatments/management of APDS. The narrative account exercise identified similar themes, but with the addition to the journey to diagnosis. These themes were explored during the individual/caregiver interviews. Reported clinical manifestations and symptoms of APDS included susceptibility to infections, lymphoproliferation, gastrointestinal (GI) disorders, fatigue, bodily pain, and breathing difficulties. HRQoL impacts of living with APDS included negative impacts to daily activities, including work, education and social and leisure activities, physical functioning, as well as emotional well-being, such as concern for the future, and interpersonal relationships. Impacts to caregiver HRQoL included negative impacts to physical health, work, emotional well-being, interpersonal relationships and family life and holidays. The management of APDS included the use of healthcare services and medications including immunoglobulin replacement therapy (IRT), rapamycin, prophylactic antibiotics, leniolisib, as well as medical procedures due to complications. CONCLUSIONS: APDS has a high disease burden and there is an unmet need for licensed, more targeted treatments which modify disease progression. This study was the first to describe the day-to-day experience and HRQoL impact of APDS from the perspective of individuals living with the condition, caregivers and treating physicians.


Assuntos
Doenças da Imunodeficiência Primária , Qualidade de Vida , Humanos , Feminino , Masculino , Adulto , Cuidadores/psicologia , Pesquisa Qualitativa , Efeitos Psicossociais da Doença , Classe I de Fosfatidilinositol 3-Quinases/genética , Pessoa de Meia-Idade , Adolescente , Pessoal de Saúde/psicologia , Adulto Jovem , Doenças Genéticas Ligadas ao Cromossomo X/psicologia , Criança
10.
J Prim Care Community Health ; 15: 21501319241253524, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38727182

RESUMO

OBJECTIVE: Worsening rates of infant and maternal mortality in the United States serve as an urgent call for multi-modal intervention. Infant Well Child Visits (WCVs) provide an opportunity for prevention, however not all infants receive the recommended schedule of visits, with infants of low-income and Black families missing a higher portion of WCVs. Due to diverse experiences and needs of under-resourced communities throughout the United States, caregiver voice is essential when designing improvement efforts. METHODS: Purposeful sampling and interviewing of 10 caregivers in Cincinnati, OH was performed by community peer researchers. Interview transcripts were evaluated by the research team, with identification of several important themes. RESULTS: Nine out of 10 caregivers self-identified as Black. All young children of the interviewed caregivers had Medicaid as their insurance provider. All interviews highlighted rich perspectives on caregiver hopes for their child, family, and selves. Establishing trust through empathy, shared decision making, and the nurturing of interpersonal patient-practitioner relationships is crucial for fostering a positive healthcare experience. Levels of mistrust was perceptibly high across several interviews, with lack of racial concordance between medical provider and family exacerbating the issue for some caregivers. Caregivers voiced a tendency to rely on family and community members for when to seek out health care for their children, and additionally cited racism and perceptions of being rushed or judged as barriers to seeking further care. CONCLUSION: This study emphasizes the importance of being community-informed when considering interventions. Prior research on the topic of missed WCV's often focused on material resource availability and limitations. While that was commented on by caregivers in this study as well, equal-if not more-attention was directed toward interpersonal relationship formation, the presence or absence of trust between practitioner and caregiver, and the importance of social-emotional support for caregivers. We highlight several opportunities for systemic improvements as well as future directions for research.


Assuntos
Cuidadores , Atenção Primária à Saúde , Humanos , Cuidadores/psicologia , Feminino , Masculino , Lactente , Adulto , Estados Unidos , Negro ou Afro-Americano , Confiança , Entrevistas como Assunto , Ohio , Medicaid , Pré-Escolar , Serviços de Saúde da Criança , Pesquisa Qualitativa
11.
Int J Pediatr Otorhinolaryngol ; 181: 111927, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38723425

RESUMO

PURPOSE: This work presents a new frame-by-frame video analysis method called Child-Caregiver Communication Assessment through Rebesco's Evaluation (CC-CARE), developed in the context of pediatric hearing loss as a rehabilitation tool for assessing children's early communication skills. CC-CARE stems from the commonly used Tait video analysis and extends it by including a new set of parameters aimed at disentangling between hearing-dependent and hearing-independent aspects of communication. METHOD: In this paper, we collected video samples of child-caregiver interactions in a group of 65 normal-hearing children and a group of 165 hearing-impaired children. For each group, we present the CC-CARE method and describe the parameters, their score distributions, correlations and we estimate the adherence of the CC-CARE scores with children's developmental trajectory. Moreover, we compare the results of CC-CARE scores between the two groups having had different development of the auditory system. Finally, a fully-data driven approach was employed to assess the consistency of the communicative efficacy index (CEI), a score aiming to capture a global result of the CC-CARE procedure. RESULTS: Correlations among parameter scores were found in each within-group analysis, revealing CC-CARE's internal consistency in measuring associated but nonoverlapping communication dimensions. For both groups, CC-CARE scores were associated with participants' age. Differences between scores emerged for a between-group analysis, indicating CC-CARE sensitivity to extract communication differences as a function of the hearing status. For both groups, the data analysis revealed that the CEI captures large variance portions across all parameter scores of the CC-CARE method. CONCLUSIONS: Results provide the first evidence that the CC-CARE video analysis method could be a reliable tool capable of highlighting the cascading effects of hearing impairment on children's preverbal communicative efficacy. The CC-CARE method aims to support early rehabilitation of hearing loss by describing a child's communicative efficacy.


Assuntos
Cuidadores , Comunicação , Perda Auditiva , Humanos , Masculino , Feminino , Pré-Escolar , Criança , Cuidadores/psicologia , Gravação em Vídeo , Lactente
12.
Crit Care Explor ; 6(5): e1090, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38736901

RESUMO

OBJECTIVES: To determine the impact of telementoring on caregiver performance during a high-fidelity medical simulation model (HFMSM) of a critically ill patient in a resource-limited setting. DESIGN: A two-center, randomized, controlled study using a HFMSM of a patient with community-acquired pneumonia complicated by acute respiratory distress syndrome. SETTING: A notional clinic in a remote location staffed by a single clinician and nonmedical assistant. PARTICIPANTS: Clinicians with limited experience managing critically ill patients. INTERVENTIONS: Telemedicine (TM) support. MEASUREMENTS: The primary outcome was clinical performance as measured by accuracy, reliability, and efficiency of care. Secondary outcomes were patient survival, procedural quality, subjective assessment of the HFMSM, and perceived workload. MAIN RESULTS: TM participants (N = 11) performed better than non-TM (NTM, N = 12) in providing expected care (accuracy), delivering care more consistently (reliability), and without consistent differences in efficiency (timeliness of care). Accuracy: TM completed 91% and NTM 42% of expected tasks and procedures. Efficiency: groups did not differ in the mean (± sd) minutes it took to obtain an advanced airway successfully (TM 15.2 ± 10.5 vs. NTM 22.8 ± 8.4, p = 0.10) or decompress a tension pneumothorax with a needle (TM 0.7 ± 0.5 vs. NTM 0.6 ± 0.9, p = 0.65). TM was slower than NTM in completing thoracostomy (22.3 ± 10.2 vs. 12.3 ± 4.8, p = 0.03). Reliability: TM performed 13 of 17 (76%) tasks with more consistent timing than NTM. TM completed 68% and NTM 29% of procedural quality metrics. Eighty-two percent of the TM participants versus 17% of the NTM participants simulated patients survived (p = 0.003). The groups similarly perceived the HFMSM as realistic, managed their patients with personal ownership, and experienced comparable workload and stress. CONCLUSIONS: Remote expertise provided with TM to caregivers in resource-limited settings improves caregiver performance, quality of care, and potentially real patient survival. HFMSM can be used to study interventions in ways not possible with real patients.


Assuntos
Cuidadores , Telemedicina , Humanos , Telemedicina/métodos , Cuidadores/educação , Cuidadores/psicologia , Masculino , Feminino , Adulto , Competência Clínica , Síndrome do Desconforto Respiratório/terapia , Pessoa de Meia-Idade , Estado Terminal , Reprodutibilidade dos Testes , Pneumonia/terapia
13.
Int J Cardiol ; 408: 132116, 2024 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-38703898

RESUMO

The management of heart failure has undergone significant evolution, advancing from the initial utilization of digitalis and diuretics to the contemporary practice of personalized medicine and sophisticated device therapy. Despite these advancements, the persistent challenge of high hospitalization and readmission rates underscores an urgent need for innovative solutions. This manuscript explores how the integration of digital health technologies into interventional cardiology marks a paradigm shift in the management of heart failure. These technologies are no longer mere adjuncts but have become foundational to a modern approach, providing tools for continuous monitoring, patient education, and improved outcomes post-intervention. Through an examination of current trends, this perspective article highlights the transformative impact of wearable technologies, telehealth platforms, and advanced analytical tools in reshaping patient engagement and enabling proactive care strategies. Case studies illustrate the practical advantages, including enhanced medication adherence, early detection of heart failure signs, and a reduction in healthcare facility burdens. Central to this new digital health landscape is the Information Technology Management (ITM) system, a framework poised to revolutionize patient and caregiver engagement and pave the way for the future of interventional cardiology. This manuscript delineates the ITM system's innovative architecture and its consequential role in refining current and prospective cardiological interventions.


Assuntos
Cuidadores , Insuficiência Cardíaca , Participação do Paciente , Telemedicina , Humanos , Insuficiência Cardíaca/terapia , Participação do Paciente/métodos , Gerenciamento Clínico , Tecnologia Biomédica/tendências , Tecnologia Biomédica/métodos , Tecnologia Digital , Saúde Digital
14.
JAMA Netw Open ; 7(5): e2410145, 2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-38713463

RESUMO

Importance: Symptom burden and its characteristics among survivors of pediatric cancers aged 8 to 18 years remain understudied. Objective: To examine the prevalence of symptom burden among young childhood cancer survivors and identify associations with sociodemographic, clinical, and psychological resilience skills, and health-related quality of life (HRQOL). Design, Setting, and Participants: A cross-sectional analysis using data collected from November 1, 2017, to January 31, 2019, in a survivorship clinic at a US-based comprehensive cancer center was conducted. Participants included 302 dyads of children aged 8 to 18 years who survived at least 5 years beyond diagnosis and their primary caregivers. Data analysis was performed from March 13, 2023, to February 29, 2024. Exposures: Diagnosis, caregiver-reported family conflict, self-reported caregiver anxiety, neighborhood-level social vulnerability, and survivor-reported meaning and purpose. Main Outcomes and Measures: Novel symptom-level burden, integrating the attributes of severity and daily activity interference using the pediatric version of the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events, global cumulative symptom burden, and HRQOL using the EuroQol-5D. Multinomial logistic regression identified characteristics associated with symptom burden; linear regression assessed symptom burden and HRQOL associations. Results: Among 302 survivors (mean [SD] age, 14.2 [2.9] years, mean [SD] time since diagnosis, 10.9 [2.9] years; 153 [50.7%] male), 186 (62.0%) had low, 77 (25.7%) moderate, and 37 (12.3%) high global cumulative symptom burden. Greater caregiver anxiety was associated with moderate (risk ratio [RR], 1.56; 95% CI, 1.09-2.24) global symptom burden. Greater neighborhood deprivation was associated with moderate global symptom burden (RR, 4.86; 95% CI, 1.29-18.26). Survivors with greater meaning/purpose were less likely to have moderate (RR, 0.42; 95% CI, 0.29-0.61) and high (RR, 0.27; 95% CI, 0.16-0.46) global symptom burden. The burden of individual symptoms displayed similar patterns. Low (Cohen d, -0.60; 95% CI, -0.87 to -0.32) and moderate/high (d, -0.98; 95% CI, -1.53 to -0.43) general pain, moderate/high numbness (d, -0.99; 95% CI, -1.69 to -0.29), and moderate/high worry (d, -0.55; 95% CI, -0.99 to -0.11) were associated with lower HRQOL. Conclusions and Relevance: In this cross-sectional study of young childhood cancer survivors, symptom burden was prevalent. Caregiver anxiety and disparity-related neighborhood factors were associated with greater symptom burden, whereas meaning and purpose was a protective factor. Greater specific symptom burden contributed to poorer HRQOL. The findings suggest that interventions targeting resilience and neighborhood adversity may alleviate symptom burden and improve HRQOL.


Assuntos
Sobreviventes de Câncer , Neoplasias , Qualidade de Vida , Humanos , Masculino , Feminino , Criança , Adolescente , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Estudos Transversais , Qualidade de Vida/psicologia , Neoplasias/psicologia , Cuidadores/psicologia , Efeitos Psicossociais da Doença , Ansiedade/epidemiologia , Ansiedade/psicologia , Ansiedade/etiologia , Resiliência Psicológica , Carga de Sintomas
15.
BMJ Open ; 14(5): e081620, 2024 May 30.
Artigo em Inglês | MEDLINE | ID: mdl-38816045

RESUMO

OBJECTIVES: To examine children and young people's (CYP), caregivers' and healthcare professionals' (HCPs) views or experiences of facilitators and barriers to CYP access to UK primary care services to better understand healthcare inequity. To explore differences across CYP subpopulations with greater health needs from deprived areas, identifying as ethnic minorities, with experiences of state care, special educational needs or disabilities, chronic conditions or mental health problems. DESIGN: Scoping review. ELIGIBILITY CRITERIA: Included studies were in English, published 2012-2022 and reported: the views/experiences of CYP (0-25 years), caregivers or HCPs about accessing UK primary care; using quantitative or qualitative empirical methods. DATA SOURCES: PubMed, CINAHL, Web of Science, PsycINFO and Scopus. RESULTS: We included 47 reports (46 studies). CYP/caregivers' decision to access care was facilitated by CYP/caregivers' or their family/friends' ability to identify a health issue as warranting healthcare attention. Barriers to accessing care included perceived stigma (eg, being seen as a bad parent), embarrassment and discrimination experiences. CYP and caregivers believed longer opening hours could facilitate more timely access to care. Caregivers and HCPs reported that delayed or rejected referrals to secondary or adult care were a barrier to having needs met, especially for CYP with poor mental health. CYP and caregivers in numerous studies emphasised the importance of communication and trust with HCPs, including taking their concerns seriously, being knowledgeable and providing continuity of care for CYP. Common barriers reported across high-need subpopulations were caregivers needing knowledge and confidence to advocate for their child, gaps in HCP's knowledge and a lack of connectedness between primary and secondary care. CONCLUSIONS: Connecting general practices and community health workers/services, improving CYP/caregivers' understanding of common childhood conditions, addressing HCP's knowledge gaps in paediatric care and integrated approaches between primary and secondary care may reduce inequity in access.


Assuntos
Cuidadores , Acessibilidade aos Serviços de Saúde , Atenção Primária à Saúde , Humanos , Criança , Adolescente , Reino Unido , Cuidadores/psicologia , Pessoal de Saúde/psicologia , Atitude do Pessoal de Saúde , Pré-Escolar , Adulto Jovem , Lactente , Acesso à Atenção Primária
16.
Eur J Oncol Nurs ; 70: 102596, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38805952

RESUMO

OBJECTIVE: Limited knowledge on burden and quality of life (QoL) among cancer caregivers is available in low and middle income countries. This study aims to investigate the QoL, levels of burden, and their associations among Vietnamese cancer caregivers. METHODS: This study was conducted across three hospitals in Vietnam. 348 caregivers were recruited from January to June 2021. Data were collected by using socio-demographic questionnaires, the Zarit Burden Interview scale, and Caregiver Qol Cancer. The association between QoL and burden was analyzed by using multivariate linear regression. RESULTS: Older age (p = 0.03), employed (p = 0.01), and care more than 40 h (p = 0.007) were associated with a higher burden, respectively. QoL of financial concern had the lowest score (mean = 48.03, SD = 28.87), compared to the other subscale. Caregivers who had pre-existing health conditions, unstable work, spent more than 40 h per week, and took care dependent cancer patients were associated with a lower overall QoL score. Comparing to caregivers of no burden, those of mild burden had a lower QoL score by 10.70; while those of mild severe burden had the worse QoL (lower by 23.80 scores). CONCLUSIONS: Perceptional burden among caregivers is associated with QoL. Further policies are recommended to protect cancer caregivers, to alleviate the caregiving burden, and thus to improve the overall QoL.


Assuntos
Cuidadores , Neoplasias , Qualidade de Vida , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Neoplasias/psicologia , Neoplasias/terapia , Vietnã , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Adulto , Inquéritos e Questionários , Sobrecarga do Cuidador/psicologia , Idoso , Países em Desenvolvimento , Efeitos Psicossociais da Doença , Estudos Transversais
17.
JMIR Hum Factors ; 11: e51789, 2024 May 23.
Artigo em Inglês | MEDLINE | ID: mdl-38781581

RESUMO

BACKGROUND: Early users found Engagement and Visualization to Improve Symptoms in Oncology Care (ENVISION), a web-based application designed to improve home management of hospice patients' symptoms and support patients' and family caregivers' well-being, to be generally useful and easy to use. However, they also raised concerns about potential challenges users with limited technological proficiency might experience. OBJECTIVE: We sought to concurrently accomplish two interrelated study aims: (1) to develop a conceptual framework of digital inclusivity for health information systems and (2) to apply the framework in evaluating the digital inclusivity of the ENVISION application. METHODS: We engaged ENVISION users (N=34) in a qualitative study in which data were collected via direct observation, think-aloud techniques, and responses to open-ended queries. Data were analyzed via theory elaboration and basic qualitative description. RESULTS: Accessibility, relevance, and impact were identified as 3 essential considerations in evaluating a health system's digital inclusivity. Study findings generally supported ENVISION's digital inclusivity, particularly concerning its perceived relevance to the work of family caregivers and hospice clinicians and its potentially positive impact on symptom management and quality of life. Limitations to ENVISION's digital inclusivity centered around issues of accessibility, particularly operability among individuals with limited technological knowledge and skills. CONCLUSIONS: The Accessibility, Relevance, and Impact conceptual framework of digital inclusivity for health information systems can help identify opportunities to strengthen the digital inclusivity of tools, such as ENVISION, intended for use by a broad and diverse range of users.


Assuntos
Serviços de Assistência Domiciliar , Cuidados Paliativos na Terminalidade da Vida , Pesquisa Qualitativa , Humanos , Cuidados Paliativos na Terminalidade da Vida/métodos , Feminino , Masculino , Pessoa de Meia-Idade , Avaliação de Sintomas/métodos , Adulto , Cuidadores/psicologia , Qualidade de Vida
18.
BMJ Open ; 14(5): e078505, 2024 May 16.
Artigo em Inglês | MEDLINE | ID: mdl-38760051

RESUMO

OBJECTIVE: To systematically map evidence to answer the research question: What is the relationship between the characteristics of children and young people (CYP) or their caregivers and primary care service use in the UK, taking into account underlying healthcare needs? DESIGN: Scoping review. SETTING: Primary care. ELIGIBILITY CRITERIA: English-language quantitative or mixed-methods studies published between 2012 and 2022. DATA SOURCES: Medline, Embase, Scopus and Web of Science Social Sciences Citation Index, and grey literature. RESULTS: 22 eligible studies were identified, covering general practice (n=14), dental health (n=4), child mental health (MN) services (n=3) and immunisation (n=1). Only eight studies (36%) controlled for variables associated with healthcare need (eg, age, birth weight and long-term conditions). In these, evidence of horizontal inequity in primary care use was reported for CYP living in deprived areas in England, with and without complex needs. Horizontal inequity was also identified in primary care MN referrals for CYP in England identifying as mixed-race, Asian or black ethnicity, compared with their white British peers. No evidence of horizontal inequity was observed, however, in primary care use for CYP in England exposed to parental depression, or for CYP children from low-income households in Scotland. Increasing CYP's age was associated with decreasing primary care use across included studies. No studies were found regarding CYP from Gypsy or Traveller communities, children in care, or those with disabilities or special educational needs. CONCLUSIONS: There is evidence that socioeconomic factors impact on CYP's primary care use, in particular age, ethnicity and deprivation. However, better quality evidence is required to evaluate horizontal inequity in use and address knowledge gaps regarding primary care use for vulnerable CYP populations and the impact of policy and practice related 'supply side' of primary care.


Assuntos
Cuidadores , Atenção Primária à Saúde , Humanos , Atenção Primária à Saúde/estatística & dados numéricos , Criança , Reino Unido , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Adolescente , Disparidades em Assistência à Saúde/estatística & dados numéricos , Pré-Escolar , Necessidades e Demandas de Serviços de Saúde , Serviços de Saúde da Criança/estatística & dados numéricos
19.
Eur J Oncol Nurs ; 70: 102581, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38749385

RESUMO

PURPOSE: Digital health is an indispensable tool, but its use depends on the eHealth literacy (eHL) of end-users. This study aimed to understand the need for digital health and eHL among cancer patients, caregivers, and healthcare providers and to identify differences in digital health needs related to the eHL of cancer patients. METHODS: A multicenter, descriptive correlational study was conducted and included a total of 209 patients, 150 caregivers and 150 healthcare providers. Digital health needs were identified, and eHL was measured using the Korean version of the eHealth Literacy Scale. Differences in digital health needs in relation to the eHL of patients were analyzed. RESULTS: The most necessary digital health functions among cancer patients and caregivers were 'information and education on symptom management after cancer treatment' and 'education on coping methods for each type of cancer' (87.1-94.0%). Healthcare providers reported the need for a digital health function for 'medication information' and assisting in 'medical appointments' (96.7-98.0%). The preferred types of digital health were telemonitoring, mobile services, and telemedicine by telephone (81.3-90.5%). The mean eHL score of the cancer patients was 28.84 ± 6.75. Differences existed in the need for digital health functions and preferences for digital health types between cancer patients with high and low eHL. CONCLUSIONS: Cancer patients and caregivers expressed strong needs for digital health that provide information and education about symptom management and coping with cancer. Digital health interventions for cancer care need to be developed to reflect the identified needs and preferences and eHL of end-users.


Assuntos
Cuidadores , Letramento em Saúde , Neoplasias , Telemedicina , Humanos , Feminino , Masculino , Neoplasias/terapia , Neoplasias/psicologia , Cuidadores/psicologia , Pessoa de Meia-Idade , Adulto , República da Coreia , Idoso , Avaliação das Necessidades , Pessoal de Saúde/psicologia , Inquéritos e Questionários , Saúde Digital
20.
Aging Clin Exp Res ; 36(1): 106, 2024 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-38714627

RESUMO

BACKGROUND: Given the rising prevalence of depression among older adults and the associated increase in caregiving responsibilities, understanding factors influencing caregiver burden is crucial. Previous research has not extensively explored the impact of caregivers' attributional styles, that is, how individuals interpret the causes of life events, on their care burden. AIM: This study examined the relationship between caregivers' attributional styles and their care burden for older patients with depression. METHODS: This cross-sectional study enrolled older adults aged ≥ 65 years diagnosed with depression and their caregivers. Depression was diagnosed according to the DSM-V criteria for Major Depressive Disorder or Persistent Depressive Disorder. Caregivers completed the Chinese Depression Caregiver Burden Scale (CDCBS) to assess care burden, the Hamilton Depression Rating Scale (HAM-D) to evaluate patient symptom severity, the Center for Epidemiological Studies Depression Scale (CES-D) for measuring caregivers' depression, and the Chinese Depression Patient Caregiver Attribution Style Scale (CDPCAS) to assess attributional styles. Hierarchical regression analysis was used to identify the factors independently associated with the caregiver's subjectively assessed care burden. RESULTS: The sample included 146 caregivers of geriatric patients with depression. Most depression patients were women (74.7%) with a mean age of 74.3 years, whereas the mean age of caregivers was 57.7 years. Hierarchical regression analysis identified that caregivers' gender (ß = - 0.14, p = .044), educational level (ß = 0.19, p = .008), caregivers' own depression assessed by the Center for Epidemiological Studies Depression Scale (ß = 0.41, p < .001), and attributional styles, particularly manipulation (ß = 0.29, p < .001) and illness/stress attributional style (ß = 0.23, p = .002) as independent factors associated with care burden. Patient symptom severity assessed using the Hamilton Depression Scale was not significantly correlated with care burden after controlling for attributional styles. CONCLUSIONS: Certain attributional styles, particularly the manipulation and illness/stress attributional styles, significantly increased self-reported care burden. These findings highlight the need for educational resources to change the attribution style, along with support systems and accessible mental health services for caregivers to potentially ease the care burden.


Assuntos
Cuidadores , Depressão , Humanos , Masculino , Feminino , Idoso , Cuidadores/psicologia , Estudos Transversais , Depressão/psicologia , Depressão/epidemiologia , Pessoa de Meia-Idade , Taiwan/epidemiologia , Idoso de 80 Anos ou mais , Sobrecarga do Cuidador/psicologia , Efeitos Psicossociais da Doença
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