Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 7.985
Filtrar
1.
Cureus ; 16(7): e65896, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-39092340

RESUMEN

The intersection of gerontology and public health is increasingly vital due to the global aging population and its implications for health systems. This scoping review aims to map existing literature on gerontology within public health, identify current perspectives, and evaluate interventions tailored to the needs of older adults. A systematic search was performed using predefined keywords across multiple databases, including PubMed, Google Scholar, Scopus, and Web of Science. The review included 42 studies that employed various designs, all focusing on public health interventions targeting the aging population.  Key findings indicate a pressing need to integrate gerontological principles into public health practice, recognizing the heterogeneous nature of older adults and the significance of social determinants of health. Interventions ranged from preventive health measures and chronic disease management programs to health promotion activities and caregiver support, including the application of technology to improve health outcomes. However, there was a notable lack of research on diverse populations and mental health interventions. The review also uncovered critical gaps in the literature, such as economic barriers to care access and the necessity for comprehensive policies addressing the aging population's diverse needs. In conclusion, this review emphasizes the importance of a multidimensional approach to effectively addressing older adults' health needs. While several effective interventions exist, there is an urgent need to tackle identified gaps, particularly concerning diverse populations and mental health, to enhance overall health strategies for the aging demographic.

2.
Artículo en Inglés | MEDLINE | ID: mdl-39093932

RESUMEN

Objectives: To systematically synthesize the current evidence on the effects of art-based interventions on improving anxiety, depression, stress, sleep, and well-being of cancer caregivers. Design: A systematic review. Methods: We searched PubMed, EMBASE, Web of Science, CINAHL, PsycINFO, and Cochrane Central Register of Controlled Trials databases from their inception up to April 2024. Studies exploring the effects of art-based interventions on the psychological symptoms of cancer caregivers were included. We did not restrict the publication to the particular study designs, including randomized controlled trials, quasiexperimental studies, and qualitative studies. Results: Fifteen studies of 607 participants were identified in this systematic review. Overall, the existing studies provided preliminary evidence to suggest that art-based interventions may benefit cancer caregivers in improving anxiety, depression, stress, caregiver burden, and quality of life. However, the relatively low quality of the current evidence limits the efficacy of these findings. Conclusions: According to the existing evidence, the therapeutic benefits of using art-based interventions for improving the psychological well-being of cancer caregivers are uncertain. More high-quality and well-designed studies are still required to confirm the psychological effectiveness of art-based interventions for cancer caregivers in the future.

3.
Aust J Rural Health ; 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39087436

RESUMEN

OBJECTIVE: Rural unpaid caregivers experience different opportunities and challenges than their urban counterparts. Our aim was to understand rural unpaid caregivers' experiences of challenges and opportunities during the Covid-19 pandemic in New Zealand. SETTING: Rural northern New Zealand during the Covid-19 pandemic. PARTICIPANTS: A convenience sample of 10 unpaid rural caregivers, most supporting an older person living with dementia. DESIGN: A qualitative descriptive design. Data included interviews and online workshops, and a thematic analysis. RESULTS: Rural unpaid caregivers observed that some aspects of living in a rural context were helpful during the Covid-19 pandemic. However, tasks such as shopping and long-distance travel and communication (both telephonic and digital) became more complex. Abrupt changes to routine and closure of resources and support groups created challenges. Unpaid caregivers worried about what would happen if they were hospitalised themselves. There was a diversity of experience both across caregivers, of familiar routines and rural context as resources, increased challenges requiring resourcefulness to adapt, and experiences of crisis. Many experienced all three states at different times. CONCLUSION: This research provides valuable insights into challenges and opportunities experienced by rural unpaid caregivers during the Covid-19 pandemic and may help policy-makers and healthcare professionals develop improved emergency preparedness. Multilevel, multisector responses are needed to ensure effective health and social support and access to resources including health care, access to groceries and medication, transport, and communications (telephone and digital). Enhancing rural access to effective and inexpensive online services is particularly important, as is recognition of the value of rural sites or hubs of connection and social interaction.

4.
Fam Process ; 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39091082

RESUMEN

Burden and psychological distress are higher in informal caregivers (ICs) of people with severe emotional and behavior dysregulation who have been given a diagnosis of borderline personality disorder (BPD) compared with non-caregivers. The current cross-sectional study examines the difference in outcomes of ICs of people with BPD who have received the intervention Family Connections (FC) and who also led interventions for other caregivers (caregiver-leaders) compared with those who have attended FC but not led caregiver interventions (non-leader-FC participants). The sample for this research is from a larger study (Hayes et al., 2023, Borderline Personality Disorder and Emotion Dysregulation, 10, 31). Data for 347 participants who self-reported receiving FC and completed the McLean Screening Instrument for BPD-Carer Version, the Brief COPE, the Multidimensional Scale of Perceived Social Support, the Kessler Psychological Distress scale, the WHO-5 Well-being Index, and the Coronavirus Anxiety Scale were analyzed. The results found that being a caregiver-leader was associated with higher positive mental well-being and lower psychological distress compared with non-leader-FC participants. Being a caregiver-leader was also associated with significantly greater use of the coping strategy of positive reframing and lower use of behavioral disengagement and self-blame than non-leader-FC participants. The study provides preliminary evidence that for those who have received FC, becoming an intervention leader is associated with better outcomes than caregivers who do not become leaders and provides support for caregiver-led rollout of FC across services.

5.
Am J Hosp Palliat Care ; : 10499091241268578, 2024 Aug 02.
Artículo en Inglés | MEDLINE | ID: mdl-39093015

RESUMEN

BACKGROUND: Behavioral health disorders are common among patients and caregivers in the hospice setting. Yet, limited data exist regarding what hospice providers perceive as the most common and challenging behavioral health disorders they encounter and how they manage these issues in practice. OBJECTIVE: To characterize the perspectives of hospice medical directors (HMDs) on addressing the behavioral health challenges when caring for patients enrolled in home hospice care and their family caregivers. METHODS: Semistructured interviews with seventeen certified HMDs were conducted. Data were analyzed using thematic analysis. RESULTS: Many HMDs agreed that delivering high-quality behavioral health care is a tenet for good end-of-life (EoL) care. HMDs shared that depression and anxiety were the most common behavioral health challenges they encountered, while among caregivers, substance use disorder was the most challenging. Participants mentioned that nurses and social workers played a vital role in detecting and managing behavioral health problems. HMDs also stated that providing additional training for frontline staff and incorporating behavioral health experts are potential solutions to help address current challenges. CONCLUSION: HMDs emphasized the importance of addressing behavioral health challenges among patients and caregivers to provide effective end-of-life care. Future studies should examine the viewpoints of additional key stakeholder groups (e.g., hospice interdisciplinary team members, family caregivers) and confirm them in quantitative studies. Designing and implementing evidence-based assessments and interventions to improve behavioral health care by addressing anxiety, depression, and caregiver substance use disorders is essential to improving care and care outcomes in the hospice setting.

6.
Glob Pediatr Health ; 11: 2333794X241258657, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39086597

RESUMEN

Objectives. Important factor in caring for ASD patients is the successful cooperation between the physician and the parent. Methods. The online survey has been conducted. For statistical analysis the t-student test and the U-Mann Whitney test were performed to compare 2 variables, then the Kruskal-Wallis test or ANOVA as well as The Pearson correlation and Sperman's rank correlation were performed. Results. 80.5% of respondent's PHPs did not notice the child's developmental difficulties. 22.02% of respondents can speak to their PHP about a child's difficulties. PHPs take different strategies to make patient contact with the healthcare system easier. We discovered statistically significant differences in the assessment of PHPs' abilities depending on the physicians' specialty, the children's age, the age at ASD diagnosis. Conclusion. The care for autistic patients provided by Polish PHPs is insufficient and the topic needs to be addressed immediately.

7.
Semin Oncol Nurs ; : 151697, 2024 Aug 02.
Artículo en Inglés | MEDLINE | ID: mdl-39097463

RESUMEN

OBJECTIVES: Concordance of preferences for end-of-life care regarding patients between patients with advanced cancer and family caregivers can improve the likelihood of honoring dying patients' wishes. However, there is a dearth of knowledge in mainland China. The purpose of this study was to examine patient-family caregiver concordance about patients' life-sustaining treatment preferences and associated factors among patients with advanced cancer in China. METHODS: From September 2019 to December 2021, a convenience sample of 406 dyads of advanced cancer patient-family caregiver were recruited from 2 tertiary hospitals in Wuhan, China. Participants completed a questionnaire about patient's preferences for life-sustaining treatment, respectively. The concordance was assessed by percent agreement and kappa coefficients. Associated factors were identified by univariate analysis and binary logistic regression. RESULTS: The average concordance rate on the preferences for life-sustaining treatment was 56.1%, ranging from 52.9% to 59.3%. Factors associated with a higher level of patient-family caregiver concordance were following: patients who were married, whose educational levels were at college or above, who had not been informed of diagnosis by a physician, who had been informed of the effects and side effects of related drugs by a physician, and who cared for a seriously ill family member or friend and caregivers whose educational level were primary or below. CONCLUSIONS: The patient-family caregiver concordance about patients' life-sustaining treatment preferences among patients with advanced cancer was poor. Patients' and caregivers' understanding of life-sustaining treatment and its efficacy in end-of-life should be facilitated. Relevant conversation should be encouraged between patients and caregivers, thus providing value-concordant end-of-life care for patients with cancer. IMPLICATIONS FOR NURSING PRACTICE: Health professionals need to carry out advanced care planning in oncology departments on mainland China to encourage patients and caregivers to discuss patients' end-of-life care preferences. Facilitating patients' and caregivers' understanding of life-sustaining treatment preferences may help improve the patient-caregiver concordance on life-sustaining treatment preferences among patients with advanced cancer.

8.
BMC Geriatr ; 24(1): 656, 2024 Aug 05.
Artículo en Inglés | MEDLINE | ID: mdl-39103767

RESUMEN

BACKGROUND: The majority of persons with dementia (PWD) are mainly cared for by their family members in the home. Evidence is however scarce on family caregivers' psychosocial burden and quality of life in Asian countries including Malaysia. This study describes the baseline data of a telephone-delivered psychoeducational intervention study and examines the determinants of outcome measures (caregiver burden, depressive and anxiety symptoms, quality of life and caregiving self-efficacy) among Malaysian family caregivers to PWD. METHODS: This was a cross-sectional study originated from the baseline survey of a randomized control trial of 121 family caregivers recruited from lists of PWD who were registered at memory and psychiatry clinics in three tertiary care hospitals in Malaysia. The participants were assessed for caregiver burden by the Zarit Burden Interview, depressive and anxiety symptoms by the Hospital Anxiety and Depression Scale, quality of life by the Control, Autonomy, Self-Realization, and Pleasure Scale, and caregiving self-efficacy by the Revised Scale for Caregiving Self-Efficacy. RESULTS: Prevalence of caregiver burden was 69.4%, depressive symptoms 32.2% and anxiety symptoms 32.2%. Family caregivers to PWD having perceived peer support e.g., social/family/friend/significant other supports were less likely to report caregiver burden, depressive and anxiety symptoms, and more likely to report higher levels of quality of life and caregiving self-efficacy. Being married and PWD's ability to self-care were associated with lesser likelihood of experiencing caregiver burden, depressive and anxiety symptoms. The other determinants of greater probability of reporting better quality of life were caregivers' employment and having Islamic faith. Marital status (married), PWD's ability to self-care, spousal relationship with PWD and shared caregiving process were associated with higher likelihood of reporting caregiving self-efficacy. CONCLUSION: Caregiver burden, depressive and anxiety symptoms are prevalent in family caregivers to PWD in Malaysia. Social support and caregiving related factors influence family caregivers' quality of life and caregiving self-efficacy. Implementing psychoeducational intervention and support in the psychiatry and memory clinics may help improve the psychosocial burden, quality of life and caregiving self-efficacy in family caregivers of PWD. TRIAL REGISTRATION: ISRCTN14565552 (retrospectively registered).


Asunto(s)
Cuidadores , Demencia , Salud Mental , Calidad de Vida , Autoeficacia , Humanos , Calidad de Vida/psicología , Masculino , Cuidadores/psicología , Femenino , Malasia/epidemiología , Estudios Transversales , Demencia/psicología , Persona de Mediana Edad , Anciano , Carga del Cuidador/psicología , Anciano de 80 o más Años , Adulto , Costo de Enfermedad
9.
Front Psychol ; 15: 1396874, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39108423

RESUMEN

Introduction: In South Africa, approximately half a million individuals live with epilepsy. This means that half a million families and caregivers are impacted by epilepsy, with a limited number of healthcare providers responsible for treating people living with the condition, as well as their families and caregivers. Methods: This study explored the knowledge-based care and support healthcare providers give families and caregivers. Fifteen participants were purposefully selected from Limpopo and Mpumalanga provinces to participate in the study. Data were collected via an open-ended interview guide divided into two sections: Section A comprised sociodemographic questions, and Section B had questions on epilepsy care and support. Four of the participants were male, and 11 were female, seven were community health workers, five were nurse practitioners, and three were auxiliary nurses. Seven had a grade 12 qualification or lower, and only six had a degree. The data collected was analyzed using thematic analysis, coded by the researcher and co-coded by an independent expert. Two themes emerged from the raw data: epilepsy knowledge and epilepsy support and counselling. From these two themes, three subthemes were identified: psychosocial impact of epilepsy, epilepsy-related training, and counselling and support. Results: The study revealed a gap in professional capacity building and highlighted the need for intentional knowledge sharing and equipping of healthcare providers. Discussion: The findings suggest that equipping community health workers, in particular, may be a better and more efficient way to increase the quality of life for families and caregivers and people living with epilepsy in South Africa.

10.
J Migr Health ; 10: 100244, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39108469

RESUMEN

Introduction: Europe's population is aging and becoming more ethnically diverse due to migration. The growing number of aging migrants has raised concerns about their future eldercare arrangements and their implications for both families and formal care services. Many older non-European migrants prefer family care over formal, long-term care facilities. Objective: The objective of this study is to explore the family caregiving arrangements for older Pakistani migrants from the Ahmadiyya community in Norway. Methods: This exploratory qualitative study recruited 19 women between 25 and 62 years of age who were family caregivers for older adults. Semi-structured individual (18) and group interviews (2) were conducted in Urdu and English. Findings: Our analysis reveals four main themes: the need to share caring responsibilities with family, balancing personal relations in managing care, lack of privacy while caregiving, and feelings of inadequacy. Conclusion: While rotational care for older family members offers benefits such as the sharing of responsibilities and more privacy, reliance solely on family care arrangements led to greater ambivalence among family caregivers and provoked doubts about the ability to continue caring for older relatives in the future. Our findings highlight the urgent need to establish modes of collaboration with formal care systems to ensure the support and well-being of both older adults and their family caregivers.

11.
Health Expect ; 27(1): e13939, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-39102696

RESUMEN

INTRODUCTION: Creating safer care is a high priority across healthcare systems. Despite this, most systems tend to focus on mitigating past harm, not creating proactive solutions. Managers and staff identify safety threats often with little input from patients and their caregivers during their health encounters. METHODS: This is a qualitative descriptive study utilizing focus groups and one-to-one interviews with patients and caregivers who were currently using (or had previously used) services in health systems across Canada. Data were analysed via inductive thematic analysis to understand existing and desired strategies to promote safer and better quality care from the perspectives of patients and caregivers. FINDINGS: In our analysis, we identified three key themes (safety strategies) from patients' and caregivers' perspectives and experiences: Using Tools and Approaches for Engaging Patients and Caregivers in their Care; Having Accountability Processes and Mechanisms for Safe Care; and Enabling Patients and Caregivers Access to Information. CONCLUSIONS: Safety is more than the absence of harm. Our findings outline a number of suggestions from patients and caregivers on how to make care safer, ranging from being valued on teams, participating as members of quality improvement tables, having access to health information, having access to an advocate to help make sense of information and having processes in place for disclosure and closure. Future work can further refine, implement and evaluate these strategies in practice. PATIENT OR PUBLIC CONTRIBUTIONS: An advisory group guided the research and was co-chaired by a patient partner. Members of the advisory group spanned patient and caregiver organizations and health sectors across Canada and included three patient partners and leaders who work closely with patients and caregivers in their day-to-day work. In the research itself, we engaged 28 patients and caregivers from across Canada to learn about their safety experiences and learn what safer care looks like from their perspectives.


Asunto(s)
Cuidadores , Grupos Focales , Seguridad del Paciente , Investigación Cualitativa , Humanos , Cuidadores/psicología , Canadá , Masculino , Femenino , Persona de Mediana Edad , Entrevistas como Asunto , Adulto , Anciano , Participación del Paciente , Calidad de la Atención de Salud
12.
Front Neurol ; 15: 1419791, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39105058

RESUMEN

Background and purpose: At 12 months in the phase 2 TOPAZ study, treatment with apitegromab was associated with both an improved motor function in patients with Type 2 or 3 spinal muscular atrophy (SMA) and with a favorable safety profile. This manuscript reports the extended efficacy and safety in the nonambulatory group of the TOPAZ study at 36 months. Methods: Patients who completed the primary study (NCT03921528) could enroll in an open-label extension, during which patients received apitegromab 20 mg/kg by intravenous infusion every 4 weeks. Patients were assessed periodically via the Hammersmith Functional Motor Scale-Expanded (HFMSE), Revised Upper Limb Module (RULM), World Health Organization (WHO) motor development milestones, Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT) Daily Activities and Mobility domains, and Patient-Reported Outcomes Measurement Information System (PROMIS) Fatigue questionnaire. Results: Of the 58 patients enrolled in TOPAZ, 35 were nonambulatory (mean age 7.3 years). The mean change at 36 months in HFMSE score from baseline was +4.0 (standard deviation [SD]: 7.54), and + 2.4 (3.24) for RULM score (excluding n = 7 after scoliosis surgery). Caregiver-reported outcomes (PEDI-CAT and PROMIS Fatigue) showed improvements from baseline over 36 months. In addition, most patients (28/32) improved or maintained WHO motor milestones achieved at baseline. The most frequently reported treatment-emergent adverse events were pyrexia (48.6%), nasopharyngitis (45.7%), COVID-19 infection (40.0%), vomiting (40.0%), and upper respiratory tract infection (31.4%). Conclusion: The benefit of apitegromab treatment observed at 12 months was sustained at 36 months with no new safety findings.

13.
J Artif Organs ; 2024 Aug 07.
Artículo en Inglés | MEDLINE | ID: mdl-39110301

RESUMEN

We examined the number of patients abandoning cardiac replacement therapy due to the inability to secure a designated caregiver. At Osaka University Hospital Heart Center, when we receive a consultation for a patient with severe heart failure from another hospital, a heart failure team makes a visit to the referring hospital as soon as possible. We retrospectively analyzed this hospital-visit database. We received 199 severe heart failure consultations from 2016-2023. Issues identified during hospital visits included age ≥ 65 years (8%), inability to confirm the patient's intention (8.5%), and explicit refusal of therapy (2.5%). Medical problems included multiple organ failure (18.1%), obesity (13.1%), diabetes (9.5%), malignancy (5.5%), chronic dialysis (1.0%), and other systemic diseases (12.6%). Adherence problems included poor medication compliance (3.5%), history of heavy drinking (2.5%), and smoking (2.0%). Social problems included inadequate family support in 16.1% of patients. Of the 199 patients, 95 (48.0%) proceeded to a heart transplant and LVAD indication review meeting at Osaka University Hospital. The remaining 104 patients (52.0%) did not proceed to the meeting. Reasons included improvement of heart failure with conservative treatment in 37 cases (35.6%), death before discussion in 21 cases (20.2%), medical contraindications in 18 cases (18.3%), lack of caregivers in 18 cases (18.3%; 9.5% of 199 cases), and patient refusal in 5 cases (4.8%). Approximately 10% of patients consulted at Osaka University Hospital Heart Center for severe heart failure abandoned cardiac replacement therapy due to the lack of caregivers.

14.
BMC Palliat Care ; 23(1): 195, 2024 Aug 02.
Artículo en Inglés | MEDLINE | ID: mdl-39095830

RESUMEN

BACKGROUND: Family caregivers of terminally ill and dying people do not only experience varying levels but also different dimensions of caregiver-related strain and burden. The aim of the study was to develop a short multidimensional screening tool for the detection of burden in family caregivers in palliative care. METHODS: Family caregivers of cancer patients newly admitted to specialist inpatient palliative care (N = 232) completed questionnaires on psychological burden, quality of life, social support and need fulfillment. A latent class mixture model was used to identify discrete classes of family caregivers related to their multidimensional caregiver burden. Multinomial logistic regression analyses were performed to identify the most predictive items from a set of established questionnaires. RESULTS: Four latent classes of family caregivers were identified: Currently stable caregivers (37%), Caregivers with unmet needs (20%), Psychologically burdened caregivers (30%), and High-risk caregivers (13%). Each of these classes describes a different risk profile of multidimensional family caregiver burden, although family caregivers exhibit high levels of distress across all classes. From a set of 48 items, we identified eight items that predicted the class membership best. These items represent the items of the novel multidimensional screening tool: The 8-item Screening Tool for Family Caregiver Burden in Palliative Care (CAREPAL-8). Except for social support, the items maintained fidelity to the conceptualization of multidimensional caregiver burden used in this study. A preliminary classification system was developed, which has yet to be validated. CONCLUSIONS: This study represents the first step in the establishment of a practical, self-administered screening tool that might help healthcare providers to tailor caregiver care according to their burden in daily practice. Brevity of the 8-item tool might facilitate its use in routine clinical care.


Asunto(s)
Cuidadores , Cuidados Paliativos , Humanos , Femenino , Masculino , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/psicología , Persona de Mediana Edad , Encuestas y Cuestionarios , Anciano , Cuidadores/psicología , Adulto , Carga del Cuidador/psicología , Psicometría/instrumentación , Psicometría/métodos , Apoyo Social , Tamizaje Masivo/métodos , Calidad de Vida/psicología , Anciano de 80 o más Años
15.
Complement Ther Clin Pract ; 57: 101885, 2024 Jul 22.
Artículo en Inglés | MEDLINE | ID: mdl-39098085

RESUMEN

BACKGROUND AND PURPOSE: Previous studies have suggested that music listening has the potential to positively affect cognitive functions and mood in individuals with post-stroke cognitive impairment (PSCI), with a preference for self-selected music likely to yield better outcomes. However, there is insufficient clinical evidence to suggest the use of music listening in routine rehabilitation care to treat PSCI. This randomized control trial (RCT) aims to investigate the effects of personalized music listening on mood improvement, activities of daily living (ADLs), and cognitive functions in individuals with PSCI. MATERIALS AND METHODS: A total of 34 patients with PSCI were randomly assigned to either the music group or the control group. Patients in the music group underwent a three-month personalized music-listening intervention. The intervention involved listening to a personalized playlist tailored to each individual's cultural, ethnic, and social background, life experiences, and personal music preferences. In contrast, the control group patients listened to white noise as a placebo. Cognitive function, neurological function, mood, and ADLs were assessed. RESULTS: After three months of treatment, the music group showed significantly higher Montreal Cognitive Assessment (MoCA) scores compared to the control group (p=0.027), particularly in the domains of delayed recall (p=0.019) and orientation (p=0.023). Moreover, the music group demonstrated significantly better scores in National Institutes of Health Stroke Scale (NIHSS) (p=0.008), Barthel Index (BI) (p=0.019), and Zarit Caregiver Burden Interview (ZBI) (p=0.008) compared to the control group. No effects were found on mood as measured by the Hamilton Anxiety Rating Scale (HAMA) and the Hamilton Depression Rating Scale (HAMD). CONCLUSION: Personalized music listening promotes the recovery of cognitive and neurological functions, improves ADLs, and reduces caregiver burden in patients with PSCI.

16.
Orphanet J Rare Dis ; 19(1): 287, 2024 Aug 02.
Artículo en Inglés | MEDLINE | ID: mdl-39095827

RESUMEN

BACKGROUND: This study aimed to explore the demographic characteristics, diagnostic challenges, treatment patterns, and caregiver burden of mitochondrial diseases. METHODS: This retrospective cross-sectional study enrolled patients diagnosed with mitochondrial diseases from the Department of Neurology at Peking University First Hospital between January 2010 and December 2021. A questionnaire covering demographic characteristics, diagnostic dilemma, treatment, economic aspects, and caregiver stress was administered, and disability was assessed using the modified Rankin Scale (mRS). RESULTS: A total of 183 patients (mean age: 16 (IQR: 12-25), 49.72% males) were enrolled, including 124 pediatric patients and 59 adult patients. MELAS (106. 57.92%) and Leigh syndrome (37, 20.22%) were predominant among the mitochondrial disease subtypes. Among them, 132 (72.13%) patients were initially misdiagnosed with other diseases, 58 (31.69%) patients visited 2 hospitals before confirmed as mitochondrial disease, and 39 (21.31%) patients visited 3 hospitals before confirmed as mitochondrial disease. Metabolic modifiers were the most common type of drugs used, including several dietary supplements such as L-carnitine (117, 63.93%), Coenzyme Q10 (102, 55.74%), idebenone (82, 44.81%), and vitamins (99, 54.10%) for proper mitochondrial function. Mothers are the primary caregivers for both children (36.29%) and adults (38.98%). The mRS score ranged from 0 to 5, 92.35% of the patients had different degrees of disability due to mitochondrial disease. The average monthly treatment cost was 3000 RMB for children and 3100 RMB for adults. CONCLUSIONS: This study provided valuable insights into the characteristics and challenges of mitochondrial diseases, which underscores the need for improved awareness, diagnostic efficiency, and comprehensive support for patients and caregivers.


Asunto(s)
Enfermedades Mitocondriales , Humanos , Estudios Transversales , Estudios Retrospectivos , Enfermedades Mitocondriales/diagnóstico , Masculino , Femenino , Adulto , Niño , Adolescente , Adulto Joven , Cuidadores , Ubiquinona/análogos & derivados , Ubiquinona/uso terapéutico , Carga del Cuidador , Encuestas y Cuestionarios
17.
Geriatr Nurs ; 59: 357-361, 2024 Aug 08.
Artículo en Inglés | MEDLINE | ID: mdl-39121523

RESUMEN

The requirements of caring for individuals with diseases with excess care burden like heart failure (HF) comprise a source of stress for the caregiver. This situation affects the health of caregivers and may cause a reduction in their level of compassion. However, compassion is associated with psychological benefits and coping strategies like positive mood in caregivers. The aim of this study was to investigate the correlations between compassion, coping strategies and stress levels of family members caring for individuals with HF. We found that the dysfunctional coping strategies were determined to play a partial mediating role in the relationship between caregiver compassion levels and stress levels. Caregivers with higher compassion levels reported lower stress levels. This situation may be linked to their use of relatively fewer dysfunctional coping strategies. Findings help to examine the correlations between compassion, coping strategies and stress levels of family members caring for individuals with HF.

18.
J Nurs Scholarsh ; 2024 Aug 09.
Artículo en Inglés | MEDLINE | ID: mdl-39123284

RESUMEN

INTRODUCTION: Family engagement in care has been advocated to promote recovery for patients with mental health conditions. Attitudes of mental health nurses toward the importance of families influence the way they partner with families in mental healthcare. However, little is known about how mental health nurses engage with families and quality of family-centered care (FCC) perceived by patients and caregivers. The study aimed to examine the mediating effect of family nursing practice on the association between mental health nurses' attitudes toward integrating families into care and quality of FCC perceived by patients with schizophrenia and caregivers. DESIGN: A cross-sectional study was conducted. METHODS: A convenience sample of 143 dyads of patients with schizophrenia and their caregivers and 109 mental health nurses were recruited from inpatient wards at two psychiatric hospitals in Taiwan. Demographic and clinical questionnaires, Families' Importance in Nursing Care-Nurses' Attitudes scale, Family Nursing Practice Scale, and Measure of Process of Care for Adults were used to collect data. Data were analyzed using descriptive statistics, independent-sample t-tests, one-way analysis of variance, Pearson correlation coefficients, paired-sample t-tests, and intraclass correlation coefficient (ICC). Mediation analyses were performed using Hayes' PROCESS macro in SPSS (Model 4) with bootstrapping. RESULTS: Mental health nurses exhibited supportive attitudes toward integrating families into care (Mean = 98.96) and greater perceptions of family nursing practice (Mean = 2.44). The concordances between patients and caregivers on perceived quality of family-centered care were significant (ICC = 0.63-0.77). Attitudes of mental health nurses toward integrating families into care had both the total and direct effects on all domains of quality of FCC perceived by patients and caregivers, respectively. The indirect effects of mental health nurses' attitudes toward integrating families into care on aspects of quality of FCC through family nursing practice were significant for patients (95% bias-corrected bootstrap CI of 0.015-0.053) and caregivers (95% bias-corrected bootstrap CI of 0.004-0.041). The magnitude of the indirect effects was medium to large for patients (ES = 0.209-0.257) and caregivers (ES = 0.148-0.221). CONCLUSION: Family nursing practice partially mediated the association between mental health nurses' attitudes toward integrating families into care and aspects of quality of FCC from perspectives of patients and caregivers. CLINICAL RELEVANCE: Interventions tailoring mental health nurses' practice skills and reciprocity with families have the potential to enhance supportive attitudes of mental health nurses toward working with families and further improve perceived quality of FCC in patient-caregiver dyads in mental healthcare practice.

19.
J Relig Health ; 2024 Aug 11.
Artículo en Inglés | MEDLINE | ID: mdl-39127992

RESUMEN

This study aimed to determine the predictive power of religious coping of parents of children with cancer on caregiver burden, depression, anxiety, and stress in Turkey. It was designed as a descriptive and cross-sectional study, utilizing correlational analysis and regression models to explore associations between variables. Data were collected from 164 parents in the pediatric hematology-oncology clinics of a university hospital between November 2023 and March 2024. There was a negative correlation between caregiver burden score and negative and positive religious coping scores. Caregiver burden scores were positively correlated with depression, anxiety, and stress scores. Results indicated that caregiver burden, education level, employment status, family structure, family income, and age at diagnosis significantly predicted positive religious coping. For negative religious coping, caregiver burden, education level, family structure, and family income were significant predictors. This suggests that religious coping may help reduce caregiver burden, underscoring the importance of promoting constructive coping strategies to support caregivers' well-being.

20.
Health Serv Res ; 2024 Aug 08.
Artículo en Inglés | MEDLINE | ID: mdl-39118405

RESUMEN

OBJECTIVE: To assess whether a team collaboration strategy (CONNECT) improves implementation outcomes of a family caregiver skills training program (iHI-FIVES). DATA SOURCES AND STUDY SETTING: iHI-FIVES was delivered to caregivers at eight Veterans Affairs (VA) medical centers. Data sources were electronic health records, staff surveys, and interviews. STUDY DESIGN: In a stepped wedge cluster randomized trial, sites were randomized to a 6-month time interval start date for iHI-FIVES launch. Sites were then randomized 1:1 to either (i) CONNECT, a team collaboration training strategy plus Replicating Effective Programs (REP), brief technical support training for staff, or (ii) REP only (non-CONNECT arm). Implementation outcomes included reach (proportion of eligible caregivers enrolled) and fidelity (proportion of expected trainings delivered). Staff interviews and surveys assessed team function including communication, implementation experience, and their relation to CONNECT and iHI-FIVES implementation outcomes. DATA COLLECTION/EXTRACTION METHODS: The sample for assessing implementation outcomes included 571 Veterans referred to VA home- and community-based services and their family caregivers eligible for iHI-FIVES. Prior to iHI-FIVES launch, staff completed 65 surveys and 62 interviews. After the start of iHI-FIVES, staff completed 52 surveys and 38 interviews. Mixed methods evaluated reach and fidelity by arm. PRINCIPAL FINDINGS: Fidelity was high overall with 88% of expected iHI-FIVES trainings delivered, and higher among REP only (non-CONNECT) compared with CONNECT sites (95% vs. 80%). Reach was 18% (average proportion of reach across eight sites) and higher among non-CONNECT compared with CONNECT sites (22% vs. 14%). Qualitative interviews revealed strong leadership support at high-reach sites. CONNECT did not influence self-reported team function. CONCLUSIONS: A team collaboration strategy (CONNECT), added to REP, required more resources to implement iHI-FIVES than REP only and did not substantially enhance reach or fidelity. Leadership support was a key condition of implementation success and may be an important factor for improving iHI-FIVES reach with national expansion.

SELECCIÓN DE REFERENCIAS
DETALLE DE LA BÚSQUEDA