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1.
Dev Psychobiol ; 66(6): e22521, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-38952248

RESUMO

Infants rely on developing attention skills to identify relevant stimuli in their environments. Although caregivers are socially rewarding and a critical source of information, they are also one of many stimuli that compete for infants' attention. Young infants preferentially hold attention on caregiver faces, but it is unknown whether they also preferentially orient to caregivers and the extent to which these attention biases reflect reward-based attention mechanisms. To address these questions, we measured 4- to 10-month-old infants' (N = 64) frequency of orienting and duration of looking to caregiver and stranger faces within multi-item arrays. We also assessed whether infants' attention to these faces related to individual differences in Surgency, an indirect index of reward sensitivity. Although infants did not show biased attention to caregiver versus stranger faces at the group level, infants were increasingly biased to orient to stranger faces with age and infants with higher Surgency scores showed more robust attention orienting and attention holding biases to caregiver faces. These effects varied based on the selective attention demands of the task, suggesting that infants' attention biases to caregiver faces may reflect both developing attention control skills and reward-based attention mechanisms.


Assuntos
Viés de Atenção , Cuidadores , Desenvolvimento Infantil , Reconhecimento Facial , Recompensa , Humanos , Masculino , Lactente , Feminino , Cuidadores/psicologia , Reconhecimento Facial/fisiologia , Viés de Atenção/fisiologia , Desenvolvimento Infantil/fisiologia , Atenção/fisiologia , Comportamento do Lactente/fisiologia
2.
Front Public Health ; 12: 1389641, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38952731

RESUMO

Aims: To assess the impact of the COVID-19 pandemic on the health condition of people ≥75 years of age and on their family caregivers in Spain. Design: Multicentric, mixed method concurrent study. Methods: This work, which will be conducted within the primary care setting in 11 administrative regions of Spain, will include three coordinated studies with different methodologies. The first is a population-based cohort study that will use real-life data to analyze the rates and evolution of health needs, care provision, and services utilization before, during, and after the pandemic. The second is a prospective cohort study with 18 months of follow-up that will evaluate the impact of COVID-19 disease on mortality, frailty, functional and cognitive capacity, and quality of life of the participants. Finally, the third will be a qualitative study with a critical social approach to understand and interpret the social, political, and economic dimensions associated with the use of health services during the pandemic. We have followed the SPIRIT Checklist to address trial protocol and related documents. This research is being funded by the Instituto de Salud Carlos III since 2021 and was approved by its ethics committee (June 2022). Discussion: The study findings will reveal the long-term impact of the COVID-19 pandemic on the older adults and their caregivers. This information will serve policymakers to adapt health policies to the needs of this population in situations of maximum stress, such as that produced by the COVID-19 pandemic. Trial Registration: Identifier: NCT05249868 [ClinicalTrials.gov].


Assuntos
COVID-19 , Autocuidado , Humanos , COVID-19/epidemiologia , Espanha/epidemiologia , Idoso , Estudos Prospectivos , Cuidadores/estatística & dados numéricos , Cuidadores/psicologia , Feminino , Idoso de 80 Anos ou mais , Qualidade de Vida , Masculino , Nível de Saúde , SARS-CoV-2 , Pandemias , Atenção Primária à Saúde/estatística & dados numéricos
3.
BMJ Open ; 14(6): e075071, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38951010

RESUMO

OBJECTIVES: Mesothelioma is an aggressive cancer predominantly affecting the lung and abdominal linings. It can have a unique impact on mental health and well-being (MHWB) due to its incurability, poor prognosis and asbestos-exposure causation. This review's aims were to identify/synthesise international evidence on mesothelioma's MHWB impacts; explore MHWB interventions used by patients and carers; and identify evidence of their effectiveness. DESIGN: Systematic review. DATA SOURCES: Databases, searched March 2022 and March 2024, were MEDLINE; CINAHL; PsycINFO; Cochrane Library; ASSIA. ELIGIBILITY CRITERIA: We included study designs focusing on psychological impacts of living with mesothelioma and MHWB interventions used by patients and informal carers, published in English since January 2002. DATA EXTRACTION AND SYNTHESIS: A team of reviewers screened included studies using standardised methods. Quality was assessed using validated tools: Mixed-Methods Appraisal tool for primary research and Joanna Briggs Institute Critical Appraisal Checklist for Systematic Reviews. RESULTS: Forty-eight studies met the inclusion criteria: 20 qualitative, 16 quantitative, nine reviews, two mixed-methods, one combined systematic review/qualitative study. UK studies predominated. Many MHWB impacts were reported, including traumatic stress, depression, anxiety and guilt. These were influenced by mesothelioma's causation, communication issues and carer-patient relational interactions. Participants used wide-ranging MHWB interventions, including religious/spiritual practice; talking to mental-health professionals; meaning-making. Some strategies were presented as unhelpful, for example, denial. Participants reported lack of access to support. CONCLUSIONS: Most qualitative studies were rated high quality. The quality of the quantitative studies and reviews varied. The sparse literature regarding MHWB in mesothelioma means more research is needed into impacts on patients and carers, including trauma. To enable access to evidence-based support, research is recommended concerning MHWB interventions' effectiveness in mesothelioma. PROSPERO REGISTRATION NUMBER: CRD42022302187.


Assuntos
Cuidadores , Saúde Mental , Mesotelioma , Humanos , Mesotelioma/psicologia , Mesotelioma/terapia , Cuidadores/psicologia , Qualidade de Vida , Ansiedade/etiologia , Depressão/etiologia
4.
Wound Manag Prev ; 70(2)2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38959342

RESUMO

BACKGROUND: Living with an ostomy is a chronic condition, and self-care in such cases improves patient outcomes. PURPOSE: To adapt and test the psychometric properties of the Turkish version of the Ostomy Self-Care Index (T-OSCI) and the Turkish version of the Caregiver Contribution to Self-Care in Ostomy Patient Index (T-CC-OSCI). METHODS: A psychometric study was conducted on a convenience sample of 202 adult patients with an ostomy and their 165 caregivers. Translation and back translation, face and content validity, construct validation, and reliability assessment of the T-OSCI and the T-CC-OSCI were performed. Exploratory factor analysis was used to evaluate the construct validity. Reliability was established using Cronbach α coefficients, ceiling and floor effects, and the Hotelling T2 test, Wilcoxon signed rank test, and intraclass correlation coefficient. RESULTS: Content validity values were in the range of 0.85 to 1 for both the T-OSCI and the T-CC-OSCI. Exploratory factor analysis demonstrated generally acceptable factor loadings. The overall index revealed a high level of internal consistency (T-OSCI = 0.968, T-CC-OSCI = 0.862). No statistically significant difference was found between test-retest measurements. There was no indication of either ceiling or floor effects, or response bias. CONCLUSION: The T-OSCI and the T-CC-OSCI are valid and reliable indexes to measure the self-care of patients with an ostomy and their caregivers. These indexes may allow health care professionals to evaluate self-care in research and clinical settings, identify educational needs, and collaborate in developing and supporting appropriate self-care initiatives for patients with an ostomy and their caregivers.


Assuntos
Cuidadores , Estomia , Psicometria , Autocuidado , Humanos , Psicometria/instrumentação , Psicometria/métodos , Autocuidado/métodos , Autocuidado/estatística & dados numéricos , Masculino , Feminino , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Reprodutibilidade dos Testes , Estomia/psicologia , Estomia/enfermagem , Estomia/estatística & dados numéricos , Pessoa de Meia-Idade , Turquia , Inquéritos e Questionários , Adulto , Idoso
5.
J Gerontol Nurs ; 50(7): 43-50, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38959507

RESUMO

PURPOSE: To examine behavior changes among formal caregivers in Taiwanese long-term care facilities (LTCFs) after receiving training in function-focused care for cognitive impairment (FFC-CI). METHOD: The current study was a clustered randomized controlled trial. Formal caregivers (i.e., RNs and nursing assistants) (N = 98) from four LTCFs were randomly assigned to experimental or control groups. Training was based on four components of FFC-CI. Data were collected four times within 9 months using five observational outcome measurements: Self-Efficacy for Restorative Care (SERCS), Outcome Expectations for Restorative Care Scale (OERCS), Restorative Care Knowledge Scale (RCKS), Restorative Care Behavior Checklist (RCBC), and Job Attitude Scale (JAS). RESULTS: Statistically significant changes were noted in each activity of restorative care behavior among the four observational measurements. Results also indicated that job satisfaction was a statistically significant main effect for the experimental group; however, SERCS, OERCS, and RCKS scores were not statistically significant. CONCLUSION: To eliminate gaps between translating research outcomes to clinical practice, this study applied a theory-based caring model for caregivers to improve knowledge and skills in caring for older adults with dementia. Caregivers who received training in FFC-CI not only had higher job satisfaction but could also provide specific FFC activities for residents during their daily care. [Journal of Gerontological Nursing, 50(7), 42-50.].


Assuntos
Cuidadores , Disfunção Cognitiva , Assistência de Longa Duração , Humanos , Taiwan , Masculino , Feminino , Cuidadores/psicologia , Cuidadores/educação , Pessoa de Meia-Idade , Adulto , Disfunção Cognitiva/enfermagem , Disfunção Cognitiva/terapia , Idoso , Casas de Saúde , Assistentes de Enfermagem/psicologia , Assistentes de Enfermagem/educação
6.
J Am Dent Assoc ; 155(7): 638, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38960529
7.
BMC Health Serv Res ; 24(1): 773, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38956595

RESUMO

BACKGROUND: Nearly three out of four older people will use the emergency department (ED) during their last year of life. However, most of them do not benefit from palliative care. Providing palliative care is a real challenge for ED clinicians who are trained in acute, life-saving medicine. Our aim is to understand the ED's role in providing palliative care for this population. METHODS: We designed a qualitative study based on 1) interviews - conducted with older patients (≥ 75 years) with a palliative profile and their informal caregivers - and 2) focus groups - conducted with ED and primary care nurses and physicians. Palliative profiles were defined by the Supportive and Palliative Indicators tool (SPICT). Qualitative data was collected in French-speaking Belgium between July 2021 and July 2022. We used a constant inductive and comparative analysis. RESULTS: Five older patients with a palliative profile, four informal caregivers, 55 primary and ED caregivers participated in this study. A priori, the participants did not perceive any role for the ED in palliative care. In fact, there is widespread discomfort with caring for older patients and providing palliative care. This is explained by multiple areas of tensions. Palliative care is an approach fraught with pitfalls, i.e.: knowledge and know-how gaps, their implementation depends on patients'(co)morbidity profile and professional values, experiences and type of practice. In ED, there are constant tensions between emergency and palliative care requirements, i.e.: performance, clockwork and needs for standardised procedures versus relational care, time and diversity of palliative care projects. However, even though the ED's role in palliative care is not recognised at first sight, we highlighted four roles assumed by ED caregivers: 1) Investigator, 2) Objectifier, 3) Palliative care provider, and 4) Decision-maker on the intensity of care. A common perception among participants was that ED caregivers can assist in the early identification of patients with a palliative profile. CONCLUSIONS: Currently, there is widespread discomfort regarding ED caregivers caring for older patients and providing palliative care. Nonetheless, ED caregivers play four roles in palliative care for older patients. In the future, ED caregivers might also perform the role of early identifier.


Assuntos
Demência , Serviço Hospitalar de Emergência , Grupos Focais , Cuidados Paliativos , Pesquisa Qualitativa , Humanos , Idoso , Serviço Hospitalar de Emergência/estatística & dados numéricos , Feminino , Masculino , Idoso de 80 Anos ou mais , Demência/terapia , Bélgica , Cuidadores/psicologia , Fragilidade/terapia , Entrevistas como Assunto , Idoso Fragilizado
8.
BMC Public Health ; 24(1): 1778, 2024 Jul 03.
Artigo em Inglês | MEDLINE | ID: mdl-38961411

RESUMO

BACKGROUND: Providing nurturing care for young children is essential for promoting early child development (ECD). However, there is limited knowledge about how mothers and fathers across diverse contexts in sub-Saharan Africa care for their children and from whom they receive guidance and support in their caregiving roles. We aimed to examine caregivers' nurturing care practices and sources of parenting knowledge in rural Mozambique. METHODS: This is a secondary analysis using data from a qualitative evaluation of a pilot intervention to improve nurturing care for early child health and development within existing health systems. The evaluation was conducted across three primary care health facilities and their catchment areas in Nampula province, Mozambique. For this study, we analyzed data from in-depth interviews conducted with 36 caregivers (32 mothers and 4 fathers) to investigate mothers' and fathers' daily caregiving experiences. Data were analyzed using thematic content analysis. RESULTS: Caregivers described various caregiving roles relating to general caregiving of young children (e.g., feeding, bathing, caring for child's health) and stimulation (e.g., play and communication) activities. Mothers more commonly engaged in general caregiving activities than fathers, whereas both mothers and fathers engaged in stimulation activities. Other family members, including siblings, grandparents, and aunts/uncles, were also actively engaged in general caregiving activities. With respect to sources of parenting knowledge, caregivers received parenting guidance and support primarily from their own mothers/parents and facility-based health providers. CONCLUSIONS: These findings highlight the importance of adopting a holistic approach involving caregivers and their context and reveal potential strategies to promote caregiving and ECD in rural Mozambique and similar contexts.


Assuntos
Pai , Conhecimentos, Atitudes e Prática em Saúde , Mães , Poder Familiar , Pesquisa Qualitativa , População Rural , Humanos , Moçambique , Feminino , Poder Familiar/psicologia , Masculino , População Rural/estatística & dados numéricos , Adulto , Pai/psicologia , Mães/psicologia , Mães/estatística & dados numéricos , Pré-Escolar , Lactente , Pessoa de Meia-Idade , Cuidadores/psicologia , Adulto Jovem , Entrevistas como Assunto
9.
BMC Geriatr ; 24(1): 577, 2024 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-38965455

RESUMO

INTRODUCTION: Knowledge sharing can only happen in the context of a trusting and supportive environment, such as evolves in communities of practice and their virtual equivalent, virtual communities of practice. The main objective of this study was to understand knowledge sharing between participants in a virtual community of practice of caregivers of people with Alzheimer's. METHODS: The authors designed their own mobile application, and two virtual communities of practice were created independently and differentiated by how they were moderated: one by an expert caregiver and the other by three health professionals. 38 caregivers and four moderators were involved in the study, which ran between July 2017 and April 2018. A total of 1925 messages were exchanged within the two communities and used as data in the study. Message data was analysed using LINKS (Leveraging Internet Networks for knowledge sharing). RESULTS: Participants were more motivated to acquire knowledge related to caring for the person with Alzheimer's rather than caring for themselves. The purpose of the messages was to inform others about the sender and not to seek answers. It seems that the interaction was more to socialise and to feel heard, than to gain information. Face to face meetings appear to have accelerated community development. On nearly every parameter, behaviour was significantly different in the two communities, reflecting the importance of the character of the moderator. Caring for oneself was a much stronger theme in the community that included health professionals. Experiential knowledge sharing was particularly strong in the group led by a caregiver. DISCUSSION: Caregivers adapted the virtual community of practice to their own needs and mainly shared social knowledge. This focus on social support, which seems to be more valued by the caregivers than information about the disease, was not an expected pattern. Virtual communities of practice where peers count on each other, function more as a support group, whereas those moderated by health professionals function more as a place to go to acquire information. The level of interactivity points to such communities being important for knowledge sharing not mere knowledge transfer.


Assuntos
Doença de Alzheimer , Cuidadores , Disseminação de Informação , Humanos , Cuidadores/psicologia , Doença de Alzheimer/psicologia , Masculino , Disseminação de Informação/métodos , Feminino , Idoso , Pessoa de Meia-Idade , Adulto , Conhecimentos, Atitudes e Prática em Saúde
10.
PLoS One ; 19(7): e0305291, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38968287

RESUMO

Patients face numerous health-related decisions once advanced chronic kidney disease (CKD) is diagnosed. Yet, when patients are underprepared to navigate and discuss health-related decisions, they can make choices inconsistent with their expectations for the future. This pilot study, guided by the multiphase optimization strategy and community-engaged research principles, aimed to explore the acceptability of a developed patient component to a decision-support training intervention called ImPart (Improving Decisional Partnership of CKD Dyads). CKD patients and their family caregivers were recruited from an urban, academic medical center. Eligibility criteria for patients included a diagnosis of stage 3 or higher CKD (on chart review), and caregivers participated in interview sessions only. Patients without a caregiver were not eligible. The intervention was lay coach, telephone-delivered, and designed to be administered in 1-2 week intervals for 4 sessions. An interview guide, developed in collaboration with an advisory group, was designed to ascertain participants' experiences with the intervention. Caregiver interviews focused on changes in the patient's decision ability or engagement. Thirteen patients and eleven caregivers were interviewed. The program was viewed as "good" or "beneficial." Three themes capture the intervention's impact- 1) Frequent and deliberate disease-focused communication, 2) Future planning activation, and 3) Coaching relationship. The piloted intervention was successfully delivered, acceptable to use, and found to promote enhanced disease and future planning communication. By undergoing this work, we ensure that the patient component is feasible to use and meets the needs of participants before implementation in a larger factorial trial.


Assuntos
Cuidadores , Insuficiência Renal Crônica , Humanos , Cuidadores/psicologia , Masculino , Feminino , Insuficiência Renal Crônica/terapia , Insuficiência Renal Crônica/psicologia , Pessoa de Meia-Idade , Idoso , Projetos Piloto , Tomada de Decisões , Adulto , Participação do Paciente , Técnicas de Apoio para a Decisão
11.
Medicine (Baltimore) ; 103(27): e38807, 2024 Jul 05.
Artigo em Inglês | MEDLINE | ID: mdl-38968518

RESUMO

Cervical cancer is a common and significant health issue for women worldwide. To address the dearth of research on male partners' experiences when their significant others are diagnosed with cervical cancer, we aim to explore the unique challenges and perspectives encountered by men in these circumstances. The study adopted interpretive phenomenological analysis to qualitatively assess the experiences of males with partners diagnosed of cervical cancer. A phenomenological research design with purposive sampling technique was used to recruit and collect data from 38 participants until saturation occurred. Face to face interviews were conducted using a developed semi-structured interview guide. The data collected was analyzed using content analysis after verbatim transcription was done. The study resulted in the identification of 2 main themes, and 10 subthemes. These themes focused on the multifaceted impact of cervical cancer on spousal caregivers' lives and the coping and support mechanisms utilized by spouses of cervical cancer patients. The findings indicated that men faced several challenging experiences as a result of their spouses' condition and revealed the strategies they employed to cope with the stress of caring for their wives. Almost every man adopted a strategy to cope with the condition of their wives. This study would assist other men to understand the psychological, social, emotional, and spiritual experiences the men went through to appreciate and adopt their coping strategies whenever they go through such challenges.


Assuntos
Adaptação Psicológica , Cuidadores , Pesquisa Qualitativa , Cônjuges , Neoplasias do Colo do Útero , Humanos , Neoplasias do Colo do Útero/psicologia , Cuidadores/psicologia , Feminino , Masculino , Cônjuges/psicologia , Pessoa de Meia-Idade , Gana , Adulto , Entrevistas como Assunto , Apoio Social , Idoso
12.
Child Care Health Dev ; 50(4): e13299, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38967420

RESUMO

BACKGROUND: Autism is a complex neurodevelopmental disability with global prevalence of one in 100 individuals. Poor access to interventions in both under-resourced regions of high-income countries and low- and middle-income countries has deleterious effects on the health and wellbeing of individuals with autism and their families. Our objective was to utilize a reciprocal innovation framework and participatory methods to adapt and co-develop a culturally grounded group-based wellbeing and naturalistic developmental behavioural intervention (NDBI) training program for caregivers of young children with autism to be implemented in Kenya and rural Indiana. METHODS: This study was conducted within the Academic Model Providing Access to Healthcare (AMPATH) program. An evidence-informed Naturalistic Developmental Behavioral Intervention (NDBI) previously utilized in Indiana was adapted and iteratively refined using the Ecological Validity Framework (EVF) by a team of US and Kenyan disability experts. Key adaptations to the program were made across the EVF domains of language, persons, metaphors/content, concepts, goals, methods, and context. RESULTS: Substantial cultural adaptations were made to the NDBI following the EVF model, including the addition of traditional Kenyan cultural practices, use of narrative principles, and focus on daily routines over play. Pepea, the adapted program, involves 10 group sessions covering content in basic education on autism, positive caregiver coping strategies, and behavioural skills training to promote child communication and reduce challenging behaviour. Key adaptations for Pepea were integrated back into a US NDBI caregiver training program. CONCLUSIONS: This study fills a critical gap by detailing the adaptation process of a caregiver wellbeing and naturalistic developmental behavioural training program for caregivers of children with autism in low-resource settings. Our next steps are to report on mixed-methods outcomes from pilot implementation. Our long-term goal is to apply these insights to advance sustainable and scalable autism intervention services across the globe.


Assuntos
Cuidadores , Humanos , Quênia , Cuidadores/educação , Cuidadores/psicologia , Pré-Escolar , Estados Unidos , Masculino , Feminino , Transtorno Autístico/reabilitação , Transtorno Autístico/terapia , Transtorno Autístico/psicologia , Terapia Comportamental/métodos , Países em Desenvolvimento , Indiana , Assistência à Saúde Culturalmente Competente , Desenvolvimento de Programas , Criança
13.
Agri ; 36(3): 171-180, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38985102

RESUMO

OBJECTIVES: The objective of this study is to investigate the frequency of low back pain and the relationship between low back pain and personal and occupational risk factors in hospital employees. METHODS: The study sample consisted of 270 nurses and 189 caregivers working in a university hospital. Demographic characteristics, low back pain history, and low back pain risk factors were queried by self-report questionnaires. The Biering-Sorensen Test was used to evaluate the endurance of trunk extensor muscles. Also, the Oswestry Disability Index (ODI) and Hospital Anxiety and Depression Scale (HADS) were used. RESULTS: Of the hospital employees included in the study, 56.5% had low back pain in the last month, and 81.9% had a his-tory of low back pain. The frequency of low back pain was significantly higher among those who work in a stressful working environment, stand for extended periods, lift patients or heavy subjects without using a lifting device, and transfer patients alone. In addition, it was determined that those who exercise regularly and are satisfied with their job had significantly less low back pain (p<0.05). The mean Biering-Sorensen test difference between the two groups was statistically significant (p<0.001). There was a significant difference between the groups with and without low back pain in terms of HADS-Anxiety and HADS-Depression subscale scores. CONCLUSION: The study findings indicated that being a hospital worker is a risk factor for low back pain, and the decrease in the strength and endurance of the lower back muscles increases the risk of low back pain.


Assuntos
Cuidadores , Dor Lombar , Doenças Profissionais , Humanos , Feminino , Masculino , Fatores de Risco , Adulto , Cuidadores/psicologia , Turquia , Doenças Profissionais/epidemiologia , Inquéritos e Questionários , Pessoa de Meia-Idade , Recursos Humanos de Enfermagem Hospitalar/psicologia
14.
BMC Psychol ; 12(1): 386, 2024 Jul 10.
Artigo em Inglês | MEDLINE | ID: mdl-38987850

RESUMO

OBJECTIVE: Caring for a child, particularly one with special healthcare needs, is a demanding task that can lead to the experience of caregiver strain. This in turn has an effect on the caregiver's mental health, as well as on the child and his or her treatment. To enable the identification of afflicted parents, this study aims to provide a German version of the Caregiver Strain Questionnaire-Short Form 11 (CGSQ-SF11) and to examine its factor structure and psychometric properties. METHODS: Data from 698 caregivers were included in the analyses. Caregivers completed the CGSQ-SF11 along with measures of parenting stress (PSI-SF), stress (PSS-10), anxiety (GAD-7), depression (PHQ-8), family-related quality of life (FLQ), and social desirability (SES-17) as additional instruments for validation. A two-week follow-up questionnaire included only the CGSQ-SF11. Exploratory factor analysis followed by a confirmatory factor analysis was conducted for parents of children with and without special healthcare needs, separately. Further analyses examined the validity and reliability of the instrument. RESULTS: For parents of children with special healthcare needs, a three-factor structure (objective, internalized subjective, externalized subjective strain) with a second-order factor (caregiver strain) was supported. For parents of children without special healthcare needs, a similar three-factor structure was found, although the second-order factor was not supported. Measurement invariance between the two groups was not confirmed. Internal consistency, test-retest reliability, and validity were largely supported in both groups. CONCLUSIONS: The results indicate that the German version of the CGSQ SF-11 is a valid and reliable questionnaire for measuring caregiver strain.


Assuntos
Cuidadores , Psicometria , Estresse Psicológico , Humanos , Feminino , Cuidadores/psicologia , Masculino , Psicometria/instrumentação , Estresse Psicológico/psicologia , Reprodutibilidade dos Testes , Adulto , Inquéritos e Questionários/normas , Alemanha , Criança , Pessoa de Meia-Idade , Pais/psicologia , Qualidade de Vida/psicologia , Adolescente , Pré-Escolar , Análise Fatorial
16.
BMJ Open ; 14(7): e085129, 2024 Jul 11.
Artigo em Inglês | MEDLINE | ID: mdl-38991675

RESUMO

INTRODUCTION: Children exposed to trauma are vulnerable to developing post-traumatic stress disorder (PTSD) and other adverse mental health outcomes. In low-and middle-income countries (LMICs), children are at increased risk of exposure to severe trauma and co-occurring adversities. However, relative to high-income countries, there is limited evidence of the factors that predict good versus poor psychological recovery following trauma exposure in LMIC children, and the role of caregiver support in these high-adversity communities. METHODS AND ANALYSIS: We will conduct a longitudinal, observational study of 250 children aged 8-16 years and their caregivers in South Africa, following child exposure to acute trauma. Dyads will be recruited from community hospitals following a potentially traumatic event, such as a motor vehicle accident or assault. Potential participants will be identified during their hospital visit, and if they agree, will subsequently be contacted by study researchers. Assessments will take place within 4 weeks of the traumatic event, with 3-month and 6-month follow-up assessments. Participants will provide a narrative description of the traumatic event and complete questionnaires designed to give information about social and psychological risk factors. Child PTSD symptoms will be the primary outcome, and wider trauma-related mental health (depression, anxiety, behavioural problems) will be secondary outcomes. Regression-based methods will be used to examine the association of psychosocial factors in the acute phase following trauma, including caregiver support and responding, with child PTSD and wider mental health outcomes. ETHICS AND DISSEMINATION: Ethical approvals have been granted by Stellenbosch University and the University of Bath, with additional approvals to recruit via hospitals and healthcare clinics being granted by the University of Cape Town, the Department of Health and the City of Cape Town. Study findings will be disseminated via publication in journals, workshops for practitioners and policy-makers, and public engagement events.


Assuntos
Transtornos de Estresse Pós-Traumáticos , Humanos , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Transtornos de Estresse Pós-Traumáticos/etiologia , Criança , África do Sul , Adolescente , Estudos Longitudinais , Masculino , Feminino , Trauma Psicológico/psicologia , Trauma Psicológico/epidemiologia , Cuidadores/psicologia , Projetos de Pesquisa
17.
Child Care Health Dev ; 50(4): e13303, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38991712

RESUMO

BACKGROUND: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme ('Ubuntu') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data. METHODS: Two rounds of semi-structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open-ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data-driven inductive thematic analysis. RESULTS: Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. CONCLUSIONS: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP.


Assuntos
Cuidadores , Necessidades e Demandas de Serviços de Saúde , Pesquisa Qualitativa , Humanos , Cuidadores/psicologia , Criança , Masculino , Feminino , Adolescente , Reino Unido , Acessibilidade aos Serviços de Saúde , Pré-Escolar , Avaliação das Necessidades , Adulto , Serviços de Saúde da Criança/organização & administração , Crianças com Deficiência/reabilitação , Pais/psicologia , Pessoal de Saúde/psicologia , Adulto Jovem
18.
Orphanet J Rare Dis ; 19(1): 255, 2024 Jul 06.
Artigo em Inglês | MEDLINE | ID: mdl-38971792

RESUMO

BACKGROUND: The 22q11.2 Deletion Syndrome (22q11.2 DS) presents unique healthcare challenges for affected individuals, families, and healthcare systems. Despite its rarity, 22q11.2 DS is the most common microdeletion syndrome in humans, emphasizing the need to understand and address the distinctive healthcare requirements of those affected. This paper examines the multifaceted issue of health service access and caregivers' quality of life in the context of 22q11.2 DS in Brazil, a condition with diverse signs and symptoms requiring multidisciplinary care. This study employs a comprehensive approach to evaluate health service accessibility and the quality of life of caregivers of individuals with 22q11.2 DS. It utilizes a structured Survey and the WHOQOL-bref questionnaire for data collection. RESULTS: Individuals with 22q11.2 DS continue to receive incomplete clinical management after obtaining the diagnosis, even in the face of socioeconomic status that enabled an average age of diagnosis that precedes that found in sample groups that are more representative of the Brazilian population (mean of 3.2 years versus 10 years, respectively). In turn, caring for individuals with 22q11.2 DS who face difficulty accessing health services impacts the quality of life associated with the caregivers' environment of residence. CONCLUSIONS: Results obtained help bridge the research gap in understanding how caring for individuals with multisystem clinical conditions such as 22q11.2 DS and difficulties in accessing health are intertwined with aspects of quality of life in Brazil. This research paves the way for more inclusive healthcare policies and interventions to enhance the quality of life for families affected by this syndrome.


Assuntos
Síndrome de DiGeorge , Acessibilidade aos Serviços de Saúde , Qualidade de Vida , Humanos , Brasil , Masculino , Feminino , Criança , Adulto , Adolescente , Cuidadores/psicologia , Pré-Escolar , Inquéritos e Questionários , Adulto Jovem
19.
Clin Interv Aging ; 19: 1189-1202, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38974508

RESUMO

Purpose: There is a limited availability of multidomain interventions that target cognitive frailty. Thus, the aim of the present study was to develop and evaluate the content validity and acceptance of the multidomain intervention module to reverse cognitive frailty among older adults (iAGELESS). Patients and Methods: This study was conducted in two phases: Phase I included the development of the multidomain intervention module iAGELESS and evaluation of content validity, while Phase II consisted of evaluating the acceptance of the module among 18 healthcare and social care providers, 13 older adults with cognitive frailty, and 13 caregivers. Content validity index (CVI) was used to quantify the content validity. Respondents completed a questionnaire which consisted of information on sociodemographic, followed by module acceptance evaluation with respect to content, terminologies, and graphics. The data was then analyzed descriptively. Results: A multidomain intervention module, iAGELESS was developed. The module was found to have appropriate content validity (overall CVI = 0.83). All the caregivers, 92% of older adults with cognitive frailty and 83% of healthcare and social care providers were satisfied with the overall content of the module. More than 50% of those who accepted the module had satisfactory consensus on the ease of the terminologies, length of sentences, pictures, information, color, and font size included in the module. Conclusion: The iAGELESS module demonstrated good content validity and was well accepted, thus warranting its utilization in future studies to determine its effectiveness in reversing cognitive frailty among older adults.


Assuntos
Cuidadores , Idoso Fragilizado , Humanos , Masculino , Idoso , Feminino , Idoso Fragilizado/psicologia , Cuidadores/psicologia , Idoso de 80 Anos ou mais , Inquéritos e Questionários , Disfunção Cognitiva , Reprodutibilidade dos Testes , Pessoa de Meia-Idade , Fragilidade/psicologia , Pessoal de Saúde/psicologia
20.
Can J Dent Hyg ; 58(2): 106-110, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38974819

RESUMO

Objective: Despite the vast knowledge gained through research and public health surveillance, dental caries prevalence among children from low-income households remains high. The aim of this literature review is to identify assumptions made within existing empirical, constructivist, and critical paradigms to determine how those assumptions impact knowledge and if these impacts have aided in perpetuating inequity or health disparities within this target population. Method: A literature search of EBSCOhost, PubMed, and Web of Science was conducted to retrieve articles from peer-reviewed journals published in the last 10 years, including qualitative, quantitative, and mixed methods studies. Qualitative methods included narrative research via interviews; quantitative designs included cross-sectional studies using surveys and various indices to assess oral health literacy (OHL) levels and oral health status. Exclusion criteria were non-English studies and studies that did not include female caregivers. Results: Nine primary research articles were selected for analysis. The positivist paradigm was dominant in 7 of 9 articles. Oral health social processes, such as the lack of value placed on oral health as a component of overall health by the broader medical community and the public, were not discussed as influencing factors on OHL. Discussion: Assumptions identified within the dominant paradigms were determined to perpetuate inequity or health disparities, confirming a link between caregivers' OHL levels and the oral health status of their children. It is critical that all health care professionals improve their understanding of factors affecting caregivers' OHL. Conclusion: Strategies that empower and advocate for women to improve their OHL should be developed.


Objectif: Malgré les vastes connaissances acquises par le biais de la recherche et des activités de surveillance de la santé publique, la prévalence des caries dentaires chez les enfants vivant dans des ménages à faible revenu demeure élevée. La présente revue de la littérature vise à cerner les suppositions des paradigmes empiriques, constructivistes et critiques existants afin de déterminer comment elles influent sur les connaissances, et si ces effets ont contribué à perpétuer les iniquités ou les disparités en matière de santé au sein de cette population cible. Méthodes: On a procédé à une recherche documentaire sur EBSCOhost, PubMed et Web of Science pour trouver des articles publiés au cours des 10 dernières années dans des revues à comité de lecture, y compris des études par cohortes qualitatives, quantitatives et mixtes. Les méthodes qualitatives comprenaient des recherches narratives réalisées au moyen d'entrevues. Les méthodes quantitatives comprenaient des études transversales faisant appel à des sondages, ainsi que divers indices visant à évaluer les niveaux de littératie en santé buccodentaire et la situation en matière de santé buccodentaire. Les critères d'exclusion s'appliquaient aux études non anglophones et aux études qui n'incluaient pas de femmes soignantes. Résultats: Neuf articles présentant des études originales ont été sélectionnés aux fins d'analyse. Le paradigme positiviste était dominant dans 7 des 9 articles. L'influence de certains processus sociaux de santé buccodentaire, tel que le manque de valeur accordée à la santé buccodentaire en tant qu'élément de la santé globale par la communauté médicale en général et par le public, sur la littératie en santé buccodentaire n'a pas été discutée. Discussion: On a établi que les suppositions définies dans les paradigmes dominants perpétuaient l'iniquité ou des disparités en matière de santé, ce qui confirme l'existence d'un lien entre le niveau de littératie en santé buccodentaire parmi les soignants et l'état de santé buccodentaire de leurs enfants. Il est essentiel que tous les professionnels de la santé renforcent leur compréhension des facteurs qui influent sur cette littératie chez les soignants. Conclusion: Il est nécessaire d'élaborer des stratégies propres à défendre les femmes et à leur donner les moyens d'améliorer leur littératie en santé buccodentaire.


Assuntos
Cuidadores , Letramento em Saúde , Saúde Bucal , Pobreza , Humanos , Feminino , Cuidadores/psicologia , Criança , Cárie Dentária/epidemiologia , Cárie Dentária/prevenção & controle
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