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1.
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
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 Geriatr ; 24(1): 409, 2024 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-38720258

RESUMO

BACKGROUND: This study aims to (1) determine the reliability and validity of the interRAI Chinese Self-reported Carer Needs (SCaN) assessment among informal Chinese caregivers of older adults, (2) identify predictors of caregiving distress in Asian regions with long-standing Confucian values of filial piety and family responsibility. METHODS: This cross-sectional study recruited 531 informal Chinese caregivers of older adults in Hong Kong, Shanghai, Taiwan, and Singapore. The scale reliability was examined using Cronbach's alphas (α) and McDonald's omega coefficient (ω). The concurrent validity and discriminant validity were assessed using Spearman rank correlations (rho). To examine the predictors of caregiving distress among informal caregivers of older adults, we employed hierarchical linear regression analyses informed by the Model of Carer Stress and Burden and categorized the predictors into six domains. RESULTS: Results revealed good internal consistency reliability (α = 0.83-0.96) and concurrent validity (rho = 0.45-0.74) of the interRAI Chinese SCaN assessment. Hierarchical linear regression analysis revealed that entering the background factors, primary stressors, secondary stressors, appraisal, and exacerbating factors all significantly enhanced the model's predictability, indicating that the source of caregiving distress is multidimensional. In the full model, caregivers with longer informal care time, lack of support from family and friends, have unmet needs, experience role overload, have sleep problems, and low IADL functioning are at a higher risk of caregiving distress. CONCLUSIONS: The interRAI Chinese SCaN Assessment was found to be a reliable and valid tool among the Chinese informal caregivers of older adults. It would be useful for determining family caregivers' strengths, needs, and challenges, and tailoring interventions that address the potentially modifiable factors associated with caregiving distress and maximize support. Healthcare providers working in home and community settings should be aware of the early identification of caregiving distress and routine assessment of their needs and empower them to continue taking care of their needs and providing adequate care to the care recipient.


Assuntos
Cuidadores , Avaliação das Necessidades , Autorrelato , Humanos , Cuidadores/psicologia , Masculino , Feminino , Idoso , Estudos Transversais , Pessoa de Meia-Idade , China/epidemiologia , Estresse Psicológico/psicologia , Estresse Psicológico/diagnóstico , Estresse Psicológico/epidemiologia , Reprodutibilidade dos Testes , Idoso de 80 Anos ou mais , Adulto , Taiwan/epidemiologia , População do Leste Asiático
4.
PLoS One ; 19(5): e0302525, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38722989

RESUMO

BACKGROUND: Patients with end stage kidney disease (ESKD) receiving haemodialysis experience multiple symptoms, which can present physical and emotional challenges for both patients and their informal caregivers. Caregivers can experience anxiety, depression, and social isolation negatively impacting their overall wellbeing and resulting in caregiver burden. The needs of this group of caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. AIM: The aim of this study Is to explore the unmet needs and experiences of caregivers of patients with ESKD receiving haemodialysis, and to determine the components of a supportive intervention. DESIGN: A qualitative study using semi-structured interviews (n = 24) with informal caregivers. An interpretive qualitative framework was employed to generate a rich understanding of the unmet needs and experiences of caregivers. Data was analysed using thematic analysis. Interviews were transcribed verbatim and data management was assisted through NVIVO version 11. SETTING/PARTICIPANTS: Twenty-four informal caregivers were purposively recruited from two haemodialysis settings within Northern Ireland. RESULTS: Three themes were identified: (1) The negative impact of distress, anxiety, and isolation on caregivers due to their caregiving responsibilities (2) Inadequate information and knowledge about the complexities of renal care (3) The benefits of spiritual beliefs, stress management and peer support in relieving the caregiving burden. CONCLUSIONS: Caregivers of patients with ESKD receiving haemodialysis are at increased risk of physical and psychological distress and burden arising from their caregiving role. The unpredictable nature of ESKD and haemodialysis treatment negatively impacts the caregiver experience and adds to the challenges of the role. The information needs of caregivers are not always adequately met and they subsequently lack appropriate knowledge, skills, and guidance to assist them in their caregiving role. Supportive interventions are essential for caregivers to enhance their capability to deliver effective care and improve their quality of life.


Assuntos
Cuidadores , Falência Renal Crônica , Pesquisa Qualitativa , Diálise Renal , Humanos , Cuidadores/psicologia , Diálise Renal/psicologia , Masculino , Feminino , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Falência Renal Crônica/enfermagem , Pessoa de Meia-Idade , Idoso , Adulto , Ansiedade/psicologia , Apoio Social , Qualidade de Vida , Depressão/psicologia , Estresse Psicológico , Necessidades e Demandas de Serviços de Saúde
5.
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
6.
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
7.
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
8.
J Rehabil Med ; 56: jrm34732, 2024 May 02.
Artigo em Inglês | MEDLINE | ID: mdl-38698655

RESUMO

OBJECTIVE: To investigate (i) psychometric properties of the Danish version of the Caregiver Burden Scale, (ii) predictors of burden in caregivers of persons with stroke, spinal cord injury, or traumatic brain injury, and (iii) severity of caregiver burden, and compare level of severity of burden in caregivers of persons with stroke, spinal cord injury, or traumatic brain injury. DESIGN: Cross-sectional study. PARTICIPANTS: Pooled sample of 122 caregivers. METHODS: Psychometric properties including internal consistency, floor and ceiling effects, inter-item and item-total correlation were investigated using the Caregiver Burden Scale. Severity of burden was compared using Fisher's exact test and ANOVA, and predictors of burden were investigated using multiple linear regression models. RESULTS: The total burden score exhibited good internal consistency (α = 0.93), with no floor or ceiling effects. Longer time as a caregiver was a significant predictor of higher total score. The majority (52.2%) reported a low level of caregiver burden (below cut-off of 2.00). Mean scores on the Caregiver Burden Scale were not significantly different among caregivers across diagnostic groups. Differences were found when comparing spinal cord injury caregivers with brain injury caregivers (traumatic brain injury and stroke, collectively), χ2(2) = 6.38, p = 0.04, as spinal cord injury caregivers were more likely to report low levels of burden. CONCLUSION: Good psychometric properties were reported, and most caregivers reported a low level of burden, and longer time as a caregiver was associated with higher burden. Consequently, the Caregiver Burden Scale is a valid measure to use when measuring burden in caregivers of stroke, spinal cord injury, and traumatic brain injury patients.


Assuntos
Lesões Encefálicas Traumáticas , Sobrecarga do Cuidador , Cuidadores , Psicometria , Traumatismos da Medula Espinal , Acidente Vascular Cerebral , Humanos , Traumatismos da Medula Espinal/psicologia , Traumatismos da Medula Espinal/reabilitação , Feminino , Masculino , Estudos Transversais , Pessoa de Meia-Idade , Lesões Encefálicas Traumáticas/psicologia , Acidente Vascular Cerebral/psicologia , Adulto , Cuidadores/psicologia , Sobrecarga do Cuidador/psicologia , Dinamarca , Inquéritos e Questionários , Idoso , Efeitos Psicossociais da Doença , Reprodutibilidade dos Testes
9.
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
10.
Alzheimers Dement ; 20(5): 3708-3821, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38689398

RESUMO

This article describes the public health impact of Alzheimer's disease (AD), including prevalence and incidence, mortality and morbidity, use and costs of care and the ramifications of AD for family caregivers, the dementia workforce and society. The Special Report discusses the larger health care system for older adults with cognitive issues, focusing on the role of caregivers and non-physician health care professionals. An estimated 6.9 million Americans age 65 and older are living with Alzheimer's dementia today. This number could grow to 13.8 million by 2060, barring the development of medical breakthroughs to prevent or cure AD. Official AD death certificates recorded 119,399 deaths from AD in 2021. In 2020 and 2021, when COVID-19 entered the ranks of the top ten causes of death, Alzheimer's was the seventh-leading cause of death in the United States. Official counts for more recent years are still being compiled. Alzheimer's remains the fifth-leading cause of death among Americans age 65 and older. Between 2000 and 2021, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 140%. More than 11 million family members and other unpaid caregivers provided an estimated 18.4 billion hours of care to people with Alzheimer's or other dementias in 2023. These figures reflect a decline in the number of caregivers compared with a decade earlier, as well as an increase in the amount of care provided by each remaining caregiver. Unpaid dementia caregiving was valued at $346.6 billion in 2023. Its costs, however, extend to unpaid caregivers' increased risk for emotional distress and negative mental and physical health outcomes. Members of the paid health care and broader community-based workforce are involved in diagnosing, treating and caring for people with dementia. However, the United States faces growing shortages across different segments of the dementia care workforce due to a combination of factors, including the absolute increase in the number of people living with dementia. Therefore, targeted programs and care delivery models will be needed to attract, better train and effectively deploy health care and community-based workers to provide dementia care. Average per-person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are almost three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 22 times as great. Total payments in 2024 for health care, long-term care and hospice services for people age 65 and older with dementia are estimated to be $360 billion. The Special Report investigates how caregivers of older adults with cognitive issues interact with the health care system and examines the role non-physician health care professionals play in facilitating clinical care and access to community-based services and supports. It includes surveys of caregivers and health care workers, focusing on their experiences, challenges, awareness and perceptions of dementia care navigation.


Assuntos
Doença de Alzheimer , Cuidadores , Humanos , Doença de Alzheimer/epidemiologia , Doença de Alzheimer/economia , Estados Unidos/epidemiologia , Cuidadores/psicologia , Idoso , COVID-19/epidemiologia , Prevalência , Incidência , Custos de Cuidados de Saúde/estatística & dados numéricos , Idoso de 80 Anos ou mais
11.
BMJ Open ; 14(5): e083088, 2024 May 22.
Artigo em Inglês | MEDLINE | ID: mdl-38777589

RESUMO

OBJECTIVES: Caregiver burden often goes unrecognised and can substantially affect caregivers' physical, psychological and financial well-being, thereby impacting quality of care. This study investigates burden among caregivers of children with chronic medical conditions in a tertiary care hospital in Pakistan. The study aims to assess the extent of burden, explore influencing factors and recommendations for interventions. DESIGN: Mixed-methods study, comprising of an in-person paper-based survey, employing the Zarit Burden Interview scale to assess burden scores. Qualitative component included thematic analysis of semi-structured in-depth interviews with caregivers. PARTICIPANTS: 383 caregivers of children admitted to the inpatient paediatric services at our tertiary care centre were surveyed. In-depth interviews were conducted with 19 caregivers. RESULTS: The survey revealed a mean burden score of 35.35±15.14, with nearly half of the participants (46%, n=177) experiencing mild burden, while 37% (n=140) reporting moderate-to-severe burden. The most common diagnosis was cancer (24%, n=92), while the highest burden (42.97±15.47) was noted for congenital cardiac disease. Greater burden was significantly associated with lower caregiver education, young age of the child at diagnosis and increased number of hospital visits (p<0.05). Caregivers highlighted financial strain, psychosocial effects and impact on lifestyle and relationships as key challenges. They emphasised the need for improved medical coordination, financial support and enhanced hospital services. CONCLUSIONS: The study elucidates the multifaceted nature of caregiver burden in the context of paediatric chronic illnesses in Pakistan. Interventions should emphasise financial aid, educational support and development of system-level changes to improve access to resources and medical care coordination. These insights call for policy and practice integration to support caregivers effectively.


Assuntos
Sobrecarga do Cuidador , Centros de Atenção Terciária , Humanos , Paquistão , Masculino , Feminino , Doença Crônica/psicologia , Criança , Adulto , Pré-Escolar , Sobrecarga do Cuidador/psicologia , Adolescente , Cuidadores/psicologia , Pessoa de Meia-Idade , Lactente , Pesquisa Qualitativa , Inquéritos e Questionários , Adulto Jovem , Efeitos Psicossociais da Doença
12.
BMJ Open ; 14(5): e076838, 2024 May 07.
Artigo em Inglês | MEDLINE | ID: mdl-38719334

RESUMO

INTRODUCTION: Most people with schizophrenia in China are supported by their family members in community. The patient's family is confronted with severe care burden and pressure, which directly affects the caregiver's own health and social life, and indirectly affects the patient's rehabilitation. Adequate family resources can reduce the burden and pressure on families. But there is an absence of systematic family resource indicators for people with schizophrenic disorder in China. OBJECTIVES: This study aimed to develop a set of family resource indicators for people with schizophrenic disorder in China. DESIGN: Preliminary family resource indicators were generated and refined by literature review and an expert consultation meeting. Two rounds of email-based Delphi survey were carried out to identify family resource indicators. SETTING: Two rounds of email-based Delphi survey were performed from July to September 2021 in Beijing, China. PARTICIPANTS: There were 15 mental health doctors from community health service centres and four psychiatrists from tertiary hospitals, and two primary care researchers from universities in the first and second rounds Delphi survey. RESULTS: All the 21 experts participated in both rounds of Delphi survey. A total of 46 indicators achieved consensus for inclusion in the final set of indicators after two rounds of Delphi survey. The final set of indicators was grouped into 10 domains: financial support (three indicators), psychological and spiritual support (eight indicators), medical treatment (three indicators), information and education (three indicators), structural support (two indicators), external family resources included social resources (five indicators), cultural resources (two indicators), economic resources (seven indicators), environmental resources (four indicators) and medical resources (nine indicators). CONCLUSIONS: A set of 46 family resource indicators for people with schizophrenic disorder in community was identified by an iterative Delphi process in Beijing, China. However, the indicators still need to be validated by testing in further studies.


Assuntos
Cuidadores , Técnica Delphi , Esquizofrenia , Humanos , Esquizofrenia/terapia , Esquizofrenia/reabilitação , Cuidadores/psicologia , Pequim , Feminino , Família , Masculino , Adulto , China , Apoio Social
13.
Public Health ; 231: 158-165, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38692091

RESUMO

OBJECTIVE: Understanding the preferences of old-age adults for their long-term caregivers can improve person-centred health care and the quality of long-term care (LTC). This study examines Chinese older adults' preferences for long-term caregivers. STUDY DESIGN: This is a cross-sectional study. METHODS: A national representative discrete choice experiment (DCE) surveyed 2031 adults aged 50-70 across 12 provinces in China. Each DCE scenario described five attributes: type of caregivers, place of LTC, contents of LTC, out-of-pocket payments, and quality of life (QoL). Preferences and the marginal willingness to pay (WTP) were derived using mixed-logit and latent class models. RESULTS: Older adults displayed higher preferences for long-term caregivers who improve their QoL, incur lower out-of-pocket payments, and provide medical LTC services at home, with the maximum WTP of $22.832 per month. QoL was rated as the most important LTC factor, followed by the place of LTC and the type of caregivers. When the level of QoL improved from poor to good, respondents would be willing to pay $18.375 per month more (95% confidence interval: 16.858 to 20.137), and the uptake rate increased by 76.47%. There was preference heterogeneity among older people with different sex, education, family size, and knowledge of LTC insurance. CONCLUSION: QoL was the most important factor in older Chinese adults' preference for caregivers. Home care and medical care from formal caregivers was preferred by older adults. We recommend training family caregivers, raising older people's awareness of LTC insurance, and guiding policymakers in developing people-oriented LTC and a multi-level LTC system.


Assuntos
Cuidadores , Comportamento de Escolha , Assistência de Longa Duração , Qualidade de Vida , Humanos , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , China , Idoso , Feminino , Masculino , Pessoa de Meia-Idade , Estudos Transversais , Assistência de Longa Duração/economia , Assistência de Longa Duração/estatística & dados numéricos , Preferência do Paciente/estatística & dados numéricos , Inquéritos e Questionários
14.
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
15.
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
16.
PLoS One ; 19(5): e0299974, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38781177

RESUMO

Rapid population aging has been placing heavy tolls on Chinese family caregivers. Previous empirical evidence from multiple countries have shown that establishing national long-term care insurance was effective in reducing family care burdens. Utilizing data from the China Health and Retirement Longitudinal Study (CHARLS) wave 2011 to 2018, this study examined the effects of implementing the pilot long-term care insurance program on family care received by the Chinese older adults, by using a time-varying Difference-in-Differences (DID) method. The results showed that: (1) the implementation of the pilot long-term care insurance program has led to a 17.2% decline in general for family care received by the Chinese older adults. (2) The effect of participating in the pilot program on family care received differed by respondent's household registration, health status, marital status, and possesion of retirement pension, and were specifically pronounced among those who were urban residents, having spouse, living with disabilities, and living with no retirement pension. (3) Further results from the mechanism analyses showed that the pilot long-term care insurance program decreased the level of family care by reducing the dual intergenerational financial support between older adults and their adult children. (4) Although participating in the pilot program decreased older adult's dependence on their adult children, their physical and mental health status were not negatively affected. This study contributes to the existing literature by evaluating the effects of implementing the pilot long-term care insurance program on family care received by the Chinese older adults, and lends supports to the previous studies that participating in long-term care insurance significantly reduces old adults' demand for family care, but not in sacrifice of their physical and mental well-being.


Assuntos
Cuidadores , Seguro de Assistência de Longo Prazo , Humanos , Idoso , Seguro de Assistência de Longo Prazo/economia , Masculino , Feminino , Cuidadores/economia , Cuidadores/psicologia , Pessoa de Meia-Idade , Estudos Longitudinais , China , Idoso de 80 Anos ou mais , Projetos Piloto , Aposentadoria/economia , Relação entre Gerações , Filhos Adultos/psicologia , Assistência de Longa Duração/economia , Família
17.
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
18.
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
19.
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
20.
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
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