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1.
Clin Nurs Res ; : 10547738241246023, 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38623695

RESUMO

Physical distancing measures to limit contagion in the COVID-19 pandemic made it difficult to care for older persons with dementia. Non-essential home visits were prevented and family caregivers took over most of their care. The aim of our study was to describe the lived experience of peoples living with dementia caregivers during the pandemic regarding the care provided and the person cared for. A qualitative phenomenological design was used. Participants were recruited using purposeful sampling. Informants were selected from primary healthcare centers, day centers, and a community mental health unit. The study participants comprised 21 caregivers. Semi-structured in-depth interviews by telephone were used, and field notes were collected from the researchers. A thematic analysis was conducted. The criteria used to control trustworthiness were credibility, transferability, dependability, and confirmability. Three main themes and six related sub-themes were identified: (1) care for the person with dementia during the pandemic, including lockdown, associated with difficulties in coping with restrictions, deterioration in health, and the impact of the closure of health and social resources; (2) health and social care provided to people with dementia after the disruptions and the care received from primary care prior to hospital or residential admission; and (3) the caregiver's perspective on the effects of the psycho-emotional impact, and coping strategies adopted in caring. Interventions for people with dementia should be planned in order to prevent the worsening of their health and cognitive status, while also developing programs to prevent stress and alleviate caregiver burden in case of health crises.

2.
Glob Ment Health (Camb) ; 11: e42, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38628157

RESUMO

Caregivers play a critical role in mediating the impacts of forced displacement on children; however, humanitarian programming remains hampered by a lack of evidence-based programming. We present findings from an evaluation of a group-based curriculum delivered over the course of 12 sessions, journey of life (JoL). A waitlist-control quasi-experimental design was implemented in the Kiryandongo refugee settlement (intervention n = 631, control n = 676). Caregiver mental distress, measured using the Kessler-6, was the primary outcome. Secondary outcomes included (a) functioning, (b) social support and (c) caregiving attitudes and behaviors. Propensity score matching (PSM) and Cohen's d estimates were used to examine the intervention effects. According to our primary PSM analysis, JoL led to significant improvements in mental distress (coef.: 2.33; p < 0.001), social support (coef.: 1.45; p < 0.001), functioning (coef.: 2.64; p < 0.001), parental warmth/affection (coef.: 2.48; p < 0.001), parental undifferentiated rejection (coef.: 0.49; p < 0.001) and attitudes around violence against children (VAC) (coef.: 1.98; p < 0.001). Evidence from Cohen's d analysis underscored the value of the intervention's effect on parental warmth/affection (0.74), mental distress (0.70) and VAC attitudes (0.68). This trial adds to the evidence on holistic parenting programming to improve the mental health and parenting outcomes among refugee caregivers.

3.
JMIR Aging ; 7: e55132, 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38630527

RESUMO

BACKGROUND: The increasing prevalence of Alzheimer disease and Alzheimer disease-related dementia in the United States has amplified the health care burden and caregiving challenges, especially for caregivers of people living with dementia. A web-based care planning tool, Olera.care, was developed to aid caregivers in managing common challenges associated with dementia care. OBJECTIVE: This study aims to preliminarily evaluate the quality and usability of the Olera.care platform and assess the preferences of using the technology and interests in learning about different older adult care services among caregivers. METHODS: For interview 1, we aim to understand caregiving needs and let the participants start engaging with the platform. After they engage with the platform, we schedule the second interview and let the participants complete the Mobile Application Rating Scale. The survey also included sociodemographic characteristics, caregiving experiences, communication preferences in technology adoption, and older adult care service use and interests. Descriptive statistics were used to describe the quality and usability of the platform and characteristics of the participants. We conducted 2-sample 2-tailed t tests to examine the differences in the Mobile Application Rating Scale evaluation scores by caregiver characteristics. RESULTS: Overall, 30 adult caregivers in Texas completed the evaluation. The majority were aged ≥50 years (25/30, 83%), women (23/30, 77%), White (25/30, 83%), and financially stable (20/30, 67%). The Olera.care platform evaluation showed high satisfaction, with an overall mean rating of 4.57 (SD 0.57) of 5, and scored well in engagement (mean 4.10, SD 0.61), functionality (mean 4.46, SD 0.44), aesthetics (mean 4.58, SD 0.53), and information quality (mean 4.76, SD 0.44) consistently across all participants. A statistically significant difference (P=.02) was observed in functionality evaluation scores by duration of caregiving, with caregivers dedicating more hours to care rating it higher than those providing less care (mean 4.6, SD 0.4 vs mean 4.2, SD 0.5). In addition, caregivers with less caregiving experience reported significantly higher evaluation scores for aesthetics (P=.04) and information quality (P=.03) compared to those with longer years of caregiving. All participants expressed a willingness to recommend the app to others, and 90% (27/30) rated the app overall positively. Most of the participants (21/30, 70%) favored anonymous interactions before receiving personalized feedback and preferred computer browsers over mobile apps. Medical home health services were the most used, with a diverse range of services being used. Caregiver support groups, medical providers, memory care, meal services, and adult day care were among the most desired services for future exploration. CONCLUSIONS: The Olera.care web-based platform is a practical, engaging, easy-to-use, visually appealing, and informative tool for dementia caregivers. Future development and research are essential to enhance the platform and comprehensively evaluate it among a broader population.


Assuntos
Doença de Alzheimer , Cuidadores , Humanos , Feminino , Idoso , Doença de Alzheimer/terapia , Fardo do Cuidador , Comunicação , Estética
4.
Qual Life Res ; 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38632146

RESUMO

PURPOSE: Caregiver burden (CB) is typically self-assessed by caregivers. However, an emerging concept is assessment of CB by the recipients of care, i.e., the patient. The specific objectives are (1) to assess the level of agreement between care recipients' and caregivers' view on CB, across financial, physical, emotional, and social domains; (2) to explore two care recipient perspectives: their self-perceived burden (CR-SPB), and their interpretation of the caregiver's view (Proxy-CB). METHODS: Data were collected from 504 caregiver-care recipient dyads in the U.S. using an online Qualtrics panel. The survey assessed caregiver burden using CarerQol and newly developed items. The level of agreement between responses was quantified using weighted kappa (κ) coefficients for individual items and intraclass correlation coefficients (ICC) for index/summary scores. RESULTS: The average age of caregivers was 49.2 years, and 62.7 years for care recipients. Dyads most commonly consisted of spouses/partners (34.5%); 68.3% lived together. Proxy-CB aligned more closely with caregiver's view, with moderate to substantial agreement across CB domains (from κ = 0.48 for emotional to κ = 0.66 for financial). In the same perspective, the CarerQol-7D Index showed moderate agreement (ICC = 0.58) and the summary score of CB items substantial agreement (ICC = 0.76). Care recipients generally overestimated  CB in the Proxy-CB perspective, while they underestimated it in the CR-SPB perspective. CONCLUSION: Results demonstrate there is a difference between perspectives. Strong agreement in Proxy-CB perspective suggests that care recipients can potentially substitute for caregivers depending on the domain. CR-SPB agrees less with caregivers and may provide complementary information.

5.
Eur J Oncol Nurs ; 70: 102565, 2024 Mar 13.
Artigo em Inglês | MEDLINE | ID: mdl-38615513

RESUMO

PURPOSE: To evaluate the clinical effects of a couple-focused dyadic coping intervention in colorectal cancer (CRC) couples. METHODS: The study was a single-blinded randomized controlled study which 226 CRC couples were recruited and randomized to either the intervention (N = 113) or the control (N = 113) group. All couples received usual care while the six-week dyadic coping intervention was provided to the intervened couples in psycho-education and skill training methods through face-to-face combined with telephone formats. Measurement data, including dyadic coping, marital satisfaction, quality of life and psychological well-being were collected at pre- and post-intervention periods. And multilevel model (MLM) was applied to analyze the effects of the intervention and the role tendency. RESULTS: A total of 173 couples completed the program and post-intervention evaluation. The retention rate was 76.5%. Results from MLM showed that the dyadic coping intervention is effective in promoting levels of dyadic coping (P < 0.001), marital satisfaction (P = 0.042), mental health (P = 0.006), and positive psychological well-being (P < 0.001), and alleviating depression (P = 0.015) in CRC couples. For role tendency, the intervention found to be more effective in CRC spousal caregivers' positive psychological well-being compared to the patients (P = 0.037). CONCLUSION: The couple-based dyadic coping intervention is effective in promoting dyadic coping and improving psychological adjustment in CRC couples. More studies were needed to further evaluate the program and its long-term efficacy in the future. In addition, given the positive effects of the intervention, clinical nursing stuffs may consider implementing such intervention in their routine work while caring for CRC couples.

6.
Dev Sci ; : e13515, 2024 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-38618899

RESUMO

Everyday caregiver-infant interactions are dynamic and multidimensional. However, existing research underestimates the dimensionality of infants' experiences, often focusing on one or two communicative signals (e.g., speech alone, or speech and gesture together). Here, we introduce "infant-directed communication" (IDC): the suite of communicative signals from caregivers to infants including speech, action, gesture, emotion, and touch. We recorded 10 min of at-home play between 44 caregivers and their 18- to 24-month-old infants from predominantly white, middle-class, English-speaking families in the United States. Interactions were coded for five dimensions of IDC as well as infants' gestures and vocalizations. Most caregivers used all five dimensions of IDC throughout the interaction, and these dimensions frequently overlapped. For example, over 60% of the speech that infants heard was accompanied by one or more non-verbal communicative cues. However, we saw marked variation across caregivers in their use of IDC, likely reflecting tailored communication to the behaviors and abilities of their infant. Moreover, caregivers systematically increased the dimensionality of IDC, using more overlapping cues in response to infant gestures and vocalizations, and more IDC with infants who had smaller vocabularies. Understanding how and when caregivers use all five signals-together and separately-in interactions with infants has the potential to redefine how developmental scientists conceive of infants' communicative environments, and enhance our understanding of the relations between caregiver input and early learning. RESEARCH HIGHLIGHTS: Infants' everyday interactions with caregivers are dynamic and multimodal, but existing research has underestimated the multidimensionality (i.e., the diversity of simultaneously occurring communicative cues) inherent in infant-directed communication. Over 60% of the speech that infants encounter during at-home, free play interactions overlap with one or more of a variety of non-speech communicative cues. The multidimensionality of caregivers' communicative cues increases in response to infants' gestures and vocalizations, providing new information about how infants' own behaviors shape their input. These findings emphasize the importance of understanding how caregivers use a diverse set of communicative behaviors-both separately and together-during everyday interactions with infants.

7.
Respir Care ; 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38626953

RESUMO

Tracheostomized children have higher mortality compared to adults due to smaller airway anatomy and greater medical complexity and are at high risk for life-threatening complications. Following new tracheostomy placement, caregivers are required to successfully complete extensive training before discharge home. Training for tracheostomy emergencies such as tube obstruction and accidental decannulation is challenging without real-life, hands-on experience, but simulation training has shown promising effects on improving caregiver knowledge and comfort in preparing for emergency situations. Readmissions and emergency department visits are common following discharge, with many due to respiratory illness. Inhaled antibiotics are frequently prescribed to treat bacterial respiratory infection. However, guidelines for standardized management of tracheostomy-related respiratory illness are not available. Although standardized decannulation protocols are utilized, evidence-based guidelines are lacking, and the role of routine polysomnogram prior to decannulation is unresolved. Several knowledge gaps in management of pediatric tracheostomy present the opportunity for future research to improve patient outcomes.

8.
J Aging Soc Policy ; : 1-19, 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38627368

RESUMO

More than 17.7 million people in the U.S. care for older adults. Analyzing population datasets can increase our understanding of the needs of family caregivers of older adults. We reviewed 14 U.S. population-based datasets (2003-2023) including older adults' and caregivers' data to assess inclusion and measurement of 8 caregiving science domains, with a focus on whether measures were validated and/or unique variables were used. Challenges exist related to survey design, sampling, and measurement. Findings highlight the need for consistent data collection by researchers, state, tribal, local, and federal programs, for improved utility of population-based datasets for caregiving and aging research.

9.
J Appl Gerontol ; : 7334648241245527, 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38629451

RESUMO

There are 200+ tested interventions for care partners (family, friends, and fictive kin) of people living with dementia (PLWD). But these interventions do not systematically cover relevant settings. Nor do these interventions affect all relevant outcomes that matter to people and healthcare systems. We present an evidence map of settings and outcomes from translated interventions to identify gaps. Of 190 studies identified, 31 unique interventions were retained in the evidence map. Identified setting gaps included studies set solely in hospitals/medical centers or set in multiple settings. Identified outcome gaps included interventions that improved care partner beliefs about providing care, care partner negative coping strategies, PLWD resources (e.g., social support), and PLWD coping strategies. Armed with an understanding of present gaps, we call on researchers to fill the identified gaps to ensure systematic coverage of settings and evaluation of outcomes that matter to people and healthcare systems.

10.
Support Care Cancer ; 32(4): 263, 2024 Apr 02.
Artigo em Inglês | MEDLINE | ID: mdl-38564042

RESUMO

PURPOSE: Spouses are often the front-line caregivers for colon cancer patients. Providing this support requires a particular set of coping skills. Our objective was to identify key skills that healthcare and medico-social sector professionals could assess in routine practice that would allow them to propose appropriate support to spouses who are accompanying colon cancer patients in their care pathway. METHODS: An online two-round Delphi study was conducted among French colon cancer patients, spouses and professionals. The content of the Delphi study was developed from a previously published qualitative study. RESULTS: In the first round of the study, 63% of the participants were professionals (n = 40), 19% spouses (n = 12) and 17% patients (n = 11). In the second round, they were respectively 55% (n = 22), 22% (n = 9) and 22% (n = 9). Twenty-seven of the 75 proposed skills were consensually identified as key skills. Nine were related to emotional and psychological well-being, six to social relations, four to organisation, five to health and three to domestic domains. The three most consensual skills (≥ 90% agreement) for spouses were (1) helping the tired patient in everyday life, (2) stimulating the patient to prevent him/her from giving up and (3) limiting one's amount of personal time to care for the patient. CONCLUSION: The study identified the key skills needed by spouses of patients being treated for colon cancer. Better awareness of these skills among professionals would enable them to offer tailored support to help patients and spouses maintain their physical and emotional well-being.


Assuntos
Cuidadores , Neoplasias do Colo , Humanos , Feminino , Masculino , Técnica Delfos , Cônjuges , Neoplasias do Colo/terapia , 60670
11.
Public Health Nutr ; 27(1): e110, 2024 Apr 05.
Artigo em Inglês | MEDLINE | ID: mdl-38576146

RESUMO

OBJECTIVE: To explore the differences in social norms around parents' food provision in different provision contexts and by demographics. DESIGN: Qualitative study using story completion methodology via an online survey in September 2021. Adults 18+ with or without children were randomised to one of three story stems focusing on food provision in different contexts; food provision at home (non-visitor), with visitors present and with the involvement of sport. Stories were coded and themed using thematic analysis. A content analysis was performed to determine count and frequency of codes in stories by participant demographics and story assumptions. SETTING: Australia. PARTICIPANTS: Adults (n 196). RESULTS: Nine themes were identified from the data resulting in four social norms around providing healthy foods and justifying non-adherence to healthy eating guidelines, evolution of family life and mealtime values, the presence of others influencing how we engage with food provision and unhealthy foods used as incentives/rewards in sport. Following content analysis, no differences of themes or norms by participant demographics or story assumptions were found. CONCLUSIONS: We identified pervasive social norms around family food provision and further identified how contextual factors resulted in variations or distinct norms. This highlights the impact context may have on the social norms parents face when providing food to their children and the opportunities and risks of leveraging these social norms to influence food choice in these contexts. Public health interventions and practitioners should understand the influence of context and social environments when promoting behaviour change and providing individualised advice. Future research could explore parents' experiences of these norms and to what extent they impact food choice.


Assuntos
Alimentos , Normas Sociais , Criança , Adulto , Humanos , Austrália , Pais , Preferências Alimentares
12.
Dementia (London) ; : 14713012241245482, 2024 Apr 04.
Artigo em Inglês | MEDLINE | ID: mdl-38575523

RESUMO

This study aims to explore the change of intimate relationship between people with Alzheimer's disease and their adult child caregivers as the disease progresses. Twelve adult child caregivers were recruited through purposive sampling. Explanatory phenomenological analysis was conducted to analyse data collected by semi-structured in-depth interviews. This study found a dynamically changing relationship between adult child caregivers and their parents with Alzheimer's disease during care giving that evolved with the progress of the disease. The relationship was the most intimate in the middle stage of the disease for most caregivers and a new reciprocal relationship developed due to caregiving. Caregivers experienced different degrees of self-growth when providing care, though caregiver burdens were common. The positive experience and perception of caregivers were important for improving the quality of life for adult child caregivers of people with Alzheimer's disease.

14.
Int Nurs Rev ; 2024 Apr 05.
Artigo em Inglês | MEDLINE | ID: mdl-38577808

RESUMO

AIM: This study investigated the levels of depression and anxiety in nurses and nursing assistants working in long-term care facilities during the COVID-19 pandemic. We also explored the potential causes of depression and anxiety in nurses and nursing assistants working in long-term care facilities during the pandemic. BACKGROUND: The COVID-19 pandemic has had a considerable impact on long-term care facilities. The high infection and mortality rates for COVID-19 have resulted in an increased workload for caregivers. INTRODUCTION: The COVID-19 pandemic exposed caregivers working in long-term care facilities to higher risks of anxiety and depression. Additionally, the high risk of infection in the work environment and concerns about spreading COVID-19 to family members and long-term care facility residents led to various forms of stress among caregivers. METHODS: The present study was a cross-sectional study. Questionnaires were used to investigate depression and anxiety among regarding nurses and nursing assistants working in long-term care facilities during the pandemic. RESULTS: The depression and anxiety levels of the nurses were higher than nursing assistants, but had no statistically significant difference (p = 0.551). The factors influencing levels of depression and anxiety in nurses contained facility affiliation and experience working. In terms of nursing assistants, age, marital status, and facility affiliation were correlated with the levels of depression and anxiety. DISCUSSION: The pandemic has severely impacted caregivers. In the process of implementing pandemic prevention measures and providing care for COVID-19 patients, safeguarding the psychological health of caregivers is also essential. CONCLUSION: The levels of depression and anxiety in nurses were higher than in nursing assistants working in long-term care facilities during the pandemic. IMPLICATION FOR NURSING AND HEALTH POLICY: Long-term care facilities managers are recommended to enhance the education and training process for caregivers. Managers are also recommended to ensure provision of sufficient amounts of pandemic prevention equipment and resources.

15.
Childs Nerv Syst ; 2024 Apr 05.
Artigo em Inglês | MEDLINE | ID: mdl-38578480

RESUMO

PURPOSE: Patients and caregivers impacted by myelomeningocele (MMC) use online discussion board forums to create community and share information and concerns about this complex medical condition. We aim to identify the primary concerns expressed on these forums with the goal of understanding gaps in care that may merit investment of resources to improve care received by this population. METHODS: Anonymous posts from online MMC discussion boards were compiled using internet search engines. Posts were then analyzed using an adaptation of the Grounded Theory Method, a three-step system involving open, axial, and selective coding of the data by two independent researchers to identify common themes. RESULTS: Analysis of 400 posts written primarily by parents (n = 342, 85.5%) and patients (n = 45, 11.25%) yielded three overarching themes: questions surrounding quality of life, a lack of support for mothers of children with MMC, and confusion with a complex healthcare system. Many posts revealed concerns about management and well-being with MMC, including posts discussing symptoms and related conditions (n = 299, 75.75%), treatments (n = 259, 65.75%), and emotional aspects of MMC (n = 146, 36.5%). Additionally, families, especially mothers, felt a lack of support in their roles as caregivers. Finally, in 118 posts (29.5%), patients and families expressed frustration with navigating a complex healthcare system and finding specialists whose opinions they trusted. CONCLUSIONS: MMC is a complex medical condition that impacts patients and families in unique ways. Analysis of online discussion board posts identified key themes to be addressed in order to improve the healthcare experiences of those impacted by MMC.

16.
Can J Aging ; : 1-10, 2024 Apr 02.
Artigo em Inglês | MEDLINE | ID: mdl-38561989

RESUMO

BACKGROUND: The COVID-19 pandemic highlighted the importance of the care provided by family members and close friends to older people living in long-term care (LTC) homes. Our implementation science team helped three Ontario LTC homes to implement an intervention to allow family members to enter the homes during pandemic lockdowns. OBJECTIVE: We used a variety of methods to support the implementation, and this paper reports results from an Ontario-wide survey intended to help us understand the nature of the care provided by family caregivers. METHODS: We administered a survey of essential caregivers in Ontario, and a single open-ended question yielded a substantial qualitative data set that we analysed with a coding and theming procedure that yielded 13 themes. FINDINGS: The 13 themes reveal deficiencies in Ontario's LTC sector, attempts to cope with the deficiencies, and efforts to influence change and improvement. DISCUSSION: Our findings indicate that essential caregivers find it necessary to take on vital roles in order to shore up two significant gaps in the current system: they provide psychosocial and emotional (and sometimes even basic) care to residents, and they play a monitoring and advocacy role to compensate for the failings of the current regulatory compliance regime.

17.
J Adv Nurs ; 2024 Apr 02.
Artigo em Inglês | MEDLINE | ID: mdl-38563582

RESUMO

AIM: To examine studies involving the impact of telerehabilitation (TLR), tele-training and tele-support on the dyad stroke survivor and caregiver in relation to psychological, physical, social and health dimensions. DESIGN: A systematic review was conducted. DATA SOURCES: The following electronic databases were consulted until September 2023: PsycInfo, CINAHL, Eric, Ovid, PubMed, Scopus, Cochrane Central and Web of Science. REVIEW METHODS: It was conducted and reported following the checklists for Reviews of PRISMA 2020 Checklist. Critical evaluation of the quality of the studies included in the review was performed with the Joanna Briggs Institute Checklists. DATA SYNTHESIS: A total of 2290 records were identified after removing duplicates, 501 articles were selected by title and abstract and only 21 met the inclusion criteria. It included 4 quasi-experimental studies, 7 RCTs, 1 cohort study and 9 qualitative studies. The total number of participants between caregivers and stroke survivors was 1697, including 858 stroke survivors and 839 caregivers recruited from 2002 to 2022. For a total of 884 participants who carried out TLR activities in the experimental groups,11 impact domains were identified: cognitive/functional, psychological, caregiver burden, social, general health and self-efficacy, family function, quality of life, healthcare utilization, preparedness, quality of care and relationship with technology. CONCLUSIONS: The results support the application of telehealth in the discharge phase of hospitals and rehabilitation centres for stroke survivors and caregivers. TLR could be considered a substitute for traditional rehabilitation only if it is supported by a tele-learning programme for the caregiver and ongoing technical, computer and health support to satisfy the dyad's needs. IMPACT: Designing a comprehensive telemedicine programme upon the return home of the dyad involved in the stroke improves the quality of life, functional, psychological, social, family status, self-efficacy, use of health systems and the dyad's preparation for managing the stroke. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

18.
J Relig Health ; 2024 Apr 02.
Artigo em Inglês | MEDLINE | ID: mdl-38564160

RESUMO

Although several studies have analyzed the effects of spirituality on stroke survivors' physical functioning and their caregiver's outcomes, no systematic review or meta-synthesis was found to identify the lived experiences of stroke survivors and caregivers regarding spirituality. For these reasons, this study aimed to analyze quantitively and qualitatively research relating to stroke survivors' and caregivers' experiences. The included studies were RCT studies, quasi-experimental studies, qualitative, descriptive, ethnographic, and phenomenological studies, and cross-sectional studies (n = 37), with a total of 6850 stroke survivors and 1953 caregivers enrolled. Spirituality appears to play an important role in improving the quality of life and decreasing anxiety and depression of both stroke survivors and their caregivers.

19.
Qual Life Res ; 2024 Apr 04.
Artigo em Inglês | MEDLINE | ID: mdl-38573387

RESUMO

PURPOSE: This study summarized characteristics and risk factors of caregiver burden in PD patients and used meta-analysis to verify the effectiveness of the intervention on caregiver burden. METHODS: Systematic review and meta-analysis were conducted. RESULTS: Forty-nine articles that involved 5387 caregivers of patients with PD were included in this study. Results of systematic review indicated that Zarit burden Inventory (ZBI) was the most used scale to measure the caregiver burden. All scales revealed caregivers of PD patients had mild to moderate caregiver burden. For the PD patients with longer disease duration, severer disease severity, more negative emotion and cognition impairment, their caregivers intended to have higher caregiver burden. The caregiver with negative emotion and who spent more time on caregiving indicated higher caregiver burden than the others. The caregiver burden was not improved after deep brain stimulation (DBS). Meta-analysis showed that cognitive behavior therapy and palliative care had no significant effect to reduce caregiver burden in PD patients' caregiver. CONCLUSION: Caregivers of PD patients experienced mild to moderate caregiver burden. Demographic factor, diseased-related factor and negative emotional factor were the risk factors of caregiver burden. Health education and care support for long-term management after DBS surgery should be provided for patients and caregivers to decrease caregiver burden.

20.
BMC Public Health ; 24(1): 934, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38561742

RESUMO

BACKGROUND: Despite the uncontested benefits of physical activity, its promotion lags behind in the public health agenda of low- and middle-income countries (LMICs). School-based interventions are promising strategies to foster health during childhood, but evidence of their effectiveness is limited and inconclusive for LMICs. Thus, further investigation is needed on contextual factors associated with intervention implementation in low-resource settings. We studied the acceptability and feasibility of the KaziKidz health promotion intervention and its implementation and make recommendations to improve future adoption and sustainability. METHODS: KaziKidz was implemented in four primary schools from low-income communities in South Africa in 2019. Semi-structured interviews with four school principals, three focus group interviews with 16 educators, and another three with 16 caregivers were conducted between October and November 2021. Participants were purposively recruited. Interview transcripts were analyzed via thematic analysis using a deductive and reflexive approach. RESULTS: Three main themes influencing intervention implementation and adoption were identified: (1) prioritizing teachers' needs (2), integrating the program into the school structure, and (3) creating opportunities in the community. Supporting recommendations included: (theme 1) adopting intervention approaches that are inclusive of educators' health and providing them with capacity development and external support; (theme 2) fostering a feeling of ownership and belonging among school stakeholders to adapt interventions to specific resources and needs; and (theme 3) raising community awareness to encourage individuals to claim power over and actively engage with the program. CONCLUSIONS: Comprehensive interventions comprising health support, adequate training, and ongoing assistance for educators combined with school-wide and community outreach actions seeking to strengthen program ownership, accountability, and engagement can enhance uptake of school-based interventions and long-term maintenance. TRIAL REGISTRATION: ISRCTN15648510, registered on 17/04/2020.


Assuntos
Cuidadores , Promoção da Saúde , Humanos , África do Sul , Estudos de Viabilidade , Instituições Acadêmicas
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