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1.
World Allergy Organ J ; 17(4): 100891, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38559493

ABSTRACT

Background: Food allergies impose a large psychosocial burden, including mental, emotional, and social aspects, on both patients and their caregivers. Patients, caregivers, and their families often experience anxiety, isolation, and fear around food allergies. Objective: To assess the real-world mental health burden of food allergies, using the Food Allergy Research & Education (FARE) Patient Registry (NCT04653324). Methods: Self-reported data from patients with food allergies, and their caregivers, were analyzed from the FARE Food Allergy History and Mental Health Concerns surveys. Odds ratios were also calculated as a measure of association between patient food allergy characteristics and the likelihood of having mental health concerns or a formal mental health diagnosis. Results: The FARE Patient Registry included 1680 patients/caregivers. Anxiety (54%) and panic (32%) were the most common emotions that patients reported as a result of eating the food that produced an allergic reaction. About two-thirds of patients reported mental health concerns related to food allergies (62%), including anxiety after an allergic reaction, anxiety about living with food allergies, and concerns about food avoidance. Caregivers also experienced fear for the safety of their children, and often sought mental health care to cope with worry related to caring for patients with food allergies. The likelihood of having food allergy-related mental health concerns was increased for patients experiencing more than 1 reaction per year (OR 1.68-1.90) and was lowered for patients having a formal mental health diagnosis (OR 0.43). Caregivers filling out the FARE survey for pediatric patients (OR 4.03) and experiencing food allergy-related mental health concerns (OR 2.36) were both significant predictors for having a formal mental health diagnosis. Conclusion: Our study highlights a continuing unmet need for mental health screening and support as part of the management of patients with food allergies.

2.
J Gerontol Soc Work ; : 1-17, 2024 Apr 02.
Article in English | MEDLINE | ID: mdl-38564332

ABSTRACT

We analyzed 756 family caregivers (mean age = 62.3 years), investigating how emotional support from older care recipients was linked to caregivers' self-efficacy through caring relationship qualtiy. Results indicate a significant positive association between emotional support and caregivers' self-efficacy (r = 0.207, p < .01). Caring relationship quality positively correlated with emotional support (r = 0.292, p < .01) and caregivers' self-efficacy (r = 0.141, p < .01). Controlling for socialdemographic and care-related factors, relationship quality partially mediated the association between emotional support from care recipients and caregivers' self-efficacy. This suggests that interventions supporting caregivers' self-efficacy may benefit from considering both care recipients and dyadic relationships.

3.
Diabetes Obes Metab ; 2024 Apr 03.
Article in English | MEDLINE | ID: mdl-38567410

ABSTRACT

AIM: To assess the protocol feasibility and intervention acceptability of a community-based, peer support diabetes prevention programme (DPP) for African-American (AA) grandmother caregivers at risk for diabetes. MATERIALS AND METHODS: Grandmother caregivers were randomized in a 2:1 ratio to DPP (active comparator) or DPP plus HOPE (Healthy Outcomes through Peer Educators; intervention). DPP + HOPE incorporated support from a peer educator who met with participants in person or by telephone every week during the 1-year intervention. Outcomes included: (1) recruitment rates, outcome assessment, and participation adherence rates assessed quantitatively; and (2) acceptability of the programme assessed through end-of-programme focus groups. RESULTS: We successfully consented and enrolled 78% (n = 35) of the 45 AA grandmothers screened for eligibility. Eighty percent of participants (aged 64.4 ± 5.7 years) were retained up to Week 48 (74% for DPP [n = 17] and 92% for DPP + HOPE [n = 11]). All grandmothers identified social support, neighbourhood safety, and access to grocery stores as influences on their health behaviours. At Month 12, the active comparator (DPP) group and the intervention group (DPP + HOPE) had a mean change in body weight from baseline of -3.5 ± 5.5 (-0.68, -6.29) kg and - 4.4 ± 5.7 (-0.59, -8.2) kg, respectively. CONCLUSIONS: This viable study met the aim of educating and equipping AA grandmothers with the practical and sustained support needed to work toward better health for themselves and their grandchildren, who may be at risk for diabetes. The intervention was both feasible and acceptable to participating grandmothers and their organizations.

4.
Cleft Palate Craniofac J ; : 10556656241244976, 2024 Apr 01.
Article in English | MEDLINE | ID: mdl-38557293

ABSTRACT

OBJECTIVE: To explore the experiences and perceptions of barriers of parents and family members of patients with cleft lip and palate in accessing cleft services in remote northwest Nigeria. DESIGN: Face-to-face semi-structured audio recorded interviews were used to obtained qualitative textual data. Thematic analysis using interpretative descriptive techniques was employed to understand the participants' lived experiences with barriers and accessibility to cleft services. SETTING: Participants were from Sokoto, Kebbi and Zamfara states in remote northwest, Nigeria. PARTICIPANTS: Consisted of 22 caregivers (17 parents and 5 extended family members) were purposively sampled between 2017 and 2020. MAIN OUTCOME MEASURES: Barriers experienced while accessing cleft services were identified during thematic analysis. RESULT: Over three quarter of the respondents had patients with both cleft lip and palate and without any previous family history (n = 20). About two-thirds of the participants (n = 15) were females. Most of the interviews were conducted before the surgeries (n = 15). FIVE THEMES EMERGED: lack of information, financial difficulty, misrepresentation from health workers, multiple transportation and previous disappointment. CONCLUSIONS: Areas of poor awareness, misinformation from primary health care workers, financial hurdles, multiple transportation logistics and others were identified. Aggressive broadcasting of information through radio, timely treatment and collaboration with influential religious leaders were emphasized. Support, grants and subsidies from government and voluntary agencies are encouraged to mitigate the huge out of pocket cost of cleft care in the region.

5.
Int Health ; 2024 Apr 02.
Article in English | MEDLINE | ID: mdl-38563469

ABSTRACT

BACKGROUND: Inadequate health literacy increases medical costs and leads to poor health outcomes. However, there is a paucity of empirical evidence of such associations in sub-Saharan Africa. This study investigates how the household cost of malaria in children under five in Ghana varies based on different levels of health literacy. METHODS: A cross-sectional survey involving 1270 caregivers of children under five was conducted. The survey included health literacy questionnaire and several pieces of sociodemographic and behavioural variables. RESULTS: We created seven caregiver health literacy profiles by scoring nine dimensions. The mean total cost for managing malaria among respondents was US$20.29 per episode. The total household cost for caregivers with high health literacy (Profile 1) (US$24.77) was higher than all other profiles, with the lowest cost (US$17.93) among the low health literacy profile (Profile 6). Compared with Profile 4, caregivers with high health literacy (Profile 1) spent more on managing malaria in children, while those with the lowest health literacy (Profile 7) spent less. CONCLUSION: The current study presents a snapshot of malaria treatment costs, and argues that low health literacy may lead to increased costs due to possible reinfections from delayed healthcare use. There is a need for longitudinal studies to understand causal relationship between health literacy and household expenses on malaria treatment to inform policy development and interventions. LAY SUMMARY: This study explores the impact of caregiver health literacy levels on the cost of managing malaria incidents in children under five in Ghana. High health-literate caregivers incurred the highest total household cost at US$24.77, with US$17.93 incurred by lower health-literate caregivers per malaria episode.

6.
Acta Neurochir (Wien) ; 166(1): 166, 2024 Apr 03.
Article in English | MEDLINE | ID: mdl-38565800

ABSTRACT

BACKGROUND: The health-related quality of life (HRQoL) and cognition are important indicators for the quality of survival in patients with high-grade glioma (HGG). However, data on long-term survivors and their caregivers are scarce. We aim to investigate the interaction between cognition and HRQoL in long-term survivors, their caregivers' evaluations, and the effect on caregiver strain and burden. METHODS: 21 long-term HGG (8 WHO grade III and 13 WHO grade IV) survivors (survival ≥ 5 years) and 15 caregivers were included. Cognition (verbal memory, attention, executive functioning, and language), HRQoL, anxiety and depression, caregiver strain, and caregiver burden were assessed with standardized measures. Questionnaires were completed by patients and/or their caregivers. RESULTS: Mean survival was 12 years (grade III) and 8 years (grade IV). Cognition was significantly impaired with a large individual variety. Patients' general HRQoL was not impaired but all functioning scales were deviant. Patient-proxy agreement was found in most HRQoL subscales. Three patients (14%) showed indications of anxiety or depression. One-third of the caregivers reported a high caregiver strain or a high burden. Test scores for attention, executive functioning, language, and/or verbal memory were correlated with perceived global health status, cognitive functioning, and/or communication deficits. Caregiver burden was not related to cognitive deficits. CONCLUSIONS: In long-term HGG survivors maintained HRQoL seems possible even when cognition is impaired in a large variety at the individual level. A tailored approach is therefore recommended to investigate the cognitive impairments and HRQoL in patients and the need for patient and caregiver support.


Subject(s)
Glioma , Quality of Life , Humans , Quality of Life/psychology , Caregivers/psychology , Glioma/psychology , Surveys and Questionnaires , Cognition , Survivors/psychology
7.
Rev Esp Geriatr Gerontol ; 59(4): 101492, 2024 Apr 03.
Article in Spanish | MEDLINE | ID: mdl-38574566

ABSTRACT

INTRODUCTION: Given the growing increase in dementia, the need to control these patients, together with the rise of new technologies, makes a change in the current control system imperative. MATERIAL AND METHOD: We have carried out a single-center, clinical study with two groups, a control group of 72 patients/caregivers, who followed the usual controls in consultations, and another telematic group of 76 patients/caregivers, who followed the controls through of the Tecuide platform. The platform had a survey part to detect problems in patients and caregiver claudication, another training part and another chat for direct communication when the caregiver needed it and also served to respond when a problem was detected. RESULTS: After a year of monitoring with the platform we have obtained: a)in patients, reduce behavioral disorders and use of drugs, increase physical exercise and delay institutionalization (DS not found); b)in caregivers there is an improvement in satisfaction with respect to the control of patients with cognitive impairment, and c)in terms of resources, visits to emergency services and dementia consultations have decreased, although admissions to the psychogeriatric unit have increased. CONCLUSIONS: The use of Tecuide as a telematic tool in the control of patients with cognitive impairment does not seem to be inferior to the usual controls in consultations and improves caregiver satisfaction.

8.
Alzheimers Dement (N Y) ; 10(2): e12463, 2024.
Article in English | MEDLINE | ID: mdl-38596482

ABSTRACT

INTRODUCTION: We described patients' and care partners' experiences with Alzheimer's disease (AD) cerebrospinal fluid (CSF) biomarker testing and result disclosure in routine care. METHODS: IMPACT-AD BC is an observational study of clinic patients who underwent AD CSF biomarker testing as part of their routine medical care (n = 142). In the personal utility arm of the study, semi-structured phone interviews were conducted with a subset of patients (n = 34), and separately with their care partners (n = 31). Post-disclosure interviews were conducted ∼1 month and ∼6 months after biomarker result disclosure and investigated the patients' decision-making process around testing, impact of receiving results, wellness and lifestyle changes, and future planning. RESULTS: A majority of patients (90%) rated their decision to undergo testing as "easy." Post-disclosure, the majority (82%) reported overall positive feelings from having greater certainty and the ability to plan ahead, and results spurred them to adopt/continue healthy behaviors such as exercise (84%) and cognitive activities (54%). Care partners expressed relief from having more diagnostic certainty, increased appreciation of future caregiving responsibilities, and a desire to connect with support resources. DISCUSSION: Perspectives of persons with lived experience in dementia provide new insight into the value of biomarker testing and should be included as part of evidence-guided considerations for pre-test counseling and result disclosure. Moreover, study findings identify an interval when patients and care partners are highly receptive to positive lifestyle and medical interventions.

9.
Eur Urol Open Sci ; 63: 119-125, 2024 May.
Article in English | MEDLINE | ID: mdl-38596782

ABSTRACT

Context: Cancer and its treatments cause fatigue in up to 90% of men with advanced prostate cancer. As men with prostate cancer are surviving longer, cancer-related fatigue is becoming increasingly important for clinicians to understand and proactively manage. Objective: The aim of this work is to identify knowledge gaps that may support healthcare professionals to recommend personalised fatigue management strategies. Evidence acquisition: This manuscript is based on a roundtable discussion held during the European Association of Urology 2022 Annual Symposium, combined with a review of the literature. Five core themes were generated from the roundtable: (1) meaning of fatigue in prostate cancer patients, (2) impact of fatigue, (3) association between fatigue and treatment selection, (4) benefits of managing fatigue, and (5) barriers to exercise. Evidence synthesis: Cancer-related fatigue has complex underlying aetiology and is a subjective experience that may be under-reported. Some studies have shown that techniques such as education, cognitive behavioural therapy, guided imagery, and progressive muscle relaxation can result in clinically meaningful improvements in fatigue. However, the largest body of evidence, and a theme echoed in the roundtable discussions, was the benefit of exercise on fatigue. Despite the benefits of exercise, for some men, objective barriers to exercise exist and knowledge of benefits does not automatically translate into implementation and adherence. Conclusions: Understanding the specific health needs of individual patients and their desired health outcomes is essential to identify personalised strategies for minimising fatigue. As an outcome of the roundtable meeting, we developed a quick reference guide for healthcare providers. A high-resolution copy can be downloaded from https://patients.uroweb.org/library/fatigue-in-prostate-cancer-patients-guide/. Patient summary: This article is based on dialogue between a group of specialists, patients, and caregivers, which took place at a roundtable meeting during the European Association of Urology 2022 Annual Symposium. The group discussed how healthcare providers can best support their patients who experience fatigue. The group subsequently developed a guide to help healthcare providers during appointments.

10.
J Music Ther ; 2024 Apr 11.
Article in English | MEDLINE | ID: mdl-38600758

ABSTRACT

Music-based interventions are acknowledged to be accessible and beneficial to people living with dementia. As part of an over-arching research project exploring the contributions of person-centered caregiver singing (PCCS) intervention to caregiver's provision of care, this study aimed to explore caregiver's experiences of a PCCS training program. 8 caregivers across 2 care homes in South Africa participated in 4 iterative participatory cycles aimed at refining the training protocol. We completed a thematic analysis of semi-structured interviews of caregivers' experiences of the training. 3 themes emerged: workshop components contributed to positive learning experiences; caregivers' increased knowledge and insight into dementia, music, and personhood; and caregivers' enhanced self-efficacy which encompassed their emotional wellbeing, self-awareness, and confidence. Our study highlights caregivers' self-efficacy, self-hood, and personhood as valuable benefits in person-centered care training. Caregivers experienced training as both professionally and personally beneficial. While PCCS supported a shift toward a person-centered care approach, further research would help establish approaches to support sustainability of PCCS training and use in wider contexts.

11.
J Music Ther ; 2024 Apr 11.
Article in English | MEDLINE | ID: mdl-38600769

ABSTRACT

Dementia negatively affects the wellbeing of both caregivers and care recipients. Community-based therapeutic choir singing offers opportunities for music participation and social engagement that are accessible and mutually enjoyable for people with dementia and their family caregivers and promotes shared and meaningful musical interactions, which may support relationship quality. This study aimed to investigate the impact of the Remini-Sing therapeutic choir intervention on relationship quality, quality of life, depression, and social connectedness for dyads, as well as caregiver burden and care recipient anxiety. A randomized-controlled trial design was used with a target sample of 180 dyads. Due to recruitment difficulties, 34 participant dyads were recruited and randomly assigned to a 20-week group singing condition (n = 16) or a waitlisted control group (n = 18). Participant dyads consisted of people with dementia and their family caregivers who resided at home in the community. The Remini-Sing therapeutic choirs were held in community settings. Assessments were conducted by masked assessors at baseline, 11 weeks, and 21 weeks. Twenty-one dyads completed assessments at the primary timepoint (Week 11). Issues with recruitment and retention resulted in an unpowered study with no statistically significant findings. Mean decreases in anxiety and depression for choir participants with dementia were supported by medium to large effect sizes, indicating a potential intervention effect to be explored in future powered studies. Key learnings related to study design are discussed regarding recruitment, retention, participant burden, and sustainability, with recommendations made for future dementia research.

12.
Qual Health Res ; : 10497323241236308, 2024 Apr 09.
Article in English | MEDLINE | ID: mdl-38594823

ABSTRACT

Family caregivers provide the majority of long-term care and support of older adults as they age or approach the end of life. Studies often refer to family caregivers as invisible because the American healthcare system, public policy, and society do not support or recognize their work. Family caregivers who provide care to older adults who live in rural areas face unique challenges due to the rural environment. The purpose of this study was to inductively develop a theoretical framework that explains the process of family caregiving to older adults who live at home in rural areas and require daily assistance while exploring their experiences regarding access, utilization, challenges, and effectiveness of patient healthcare services and caregiver resources in rural areas. The grounded theory method of Strauss and Corbin was used for sampling, data collection, and data analysis. Fifteen family caregivers who oversaw and/or provided care on a daily basis to an older adult living in two rural counties of New York State participated in the study. Data were collected through two semi-structured interviews with each participant, yielding 30 interviews. Findings revealed that family caregivers engaged in the process of orchestrating care by growing into caregiving, integrating technology, and utilizing networks when providing and managing caregiving. Understanding caregiving from the perspective of family caregivers engaged in the process can inform healthcare practice, healthcare education, and public policy and can support better outcomes for both older adults and their family caregivers.

13.
J Clin Nurs ; 2024 Apr 08.
Article in English | MEDLINE | ID: mdl-38590040

ABSTRACT

AIMS: Based on the two-factor model of caregiving appraisals, this study aims to (1) investigate the relationships between competence in dementia care and job satisfaction (work attitudes in positive aspect) and turnover intention (work attitudes in negative aspect) among formal caregivers in nursing homes, and (2) examine the mediating roles of positive aspects of caregiving (caregiving appraisals in positive aspect) and caregiving burden (caregiving appraisals in negative aspect) in the above associations. DESIGN: A cross-sectional design was used. Structural equation modelling was employed to test the proposed model. STROBE checklist guides the reporting of this study. METHODS: Using the multistage cluster sampling method, 407 formal caregivers were selected from 43 nursing homes across 7 districts/counties in China. RESULTS: The proposed model shows a good model fit. Competence in dementia care shows significant positive associations with increased job satisfaction and decreased turnover intention among formal caregivers in nursing homes. Caregiving burden and positive aspects of caregiving mediate the relationships between competence in dementia care and both job satisfaction and turnover intention. Furthermore, the relationship between positive aspects of caregiving and job satisfaction is stronger than that with turnover intention, but the relationship between caregiving burden and turnover intention is not stronger than that with job satisfaction. CONCLUSIONS: The results demonstrate that the two-factor model of caregiving appraisals effectively elucidates the associations and underlying mechanisms between competence in dementia care and formal caregivers' work attitudes. Specifically, two crucial conclusions are drawn: (1) competence in dementia care is associated with higher levels of job satisfaction and lower levels of turnover intention among formal caregivers in nursing homes; (2) caregiving burden and positive aspects of caregiving serve as parallel mediators in these associations. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Policymakers and nursing homes managers should implement a series of measures aimed at formal caregivers in nursing home. Specifically, allocating more resources to enhance the competence in dementia care of formal caregivers is crucial, given its significant association with elevated job satisfaction and reduced turnover intention. Besides, positive and negative caregiving appraisals emerge as proximal factors influencing work attitudes of formal caregivers. Therefore, intervention projects focused on formal caregivers in nursing home should target enhancing positive experiences and alleviating caregiving burden. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

14.
Scand J Caring Sci ; 2024 Apr 09.
Article in English | MEDLINE | ID: mdl-38591362

ABSTRACT

BACKGROUND: Informal caregivers are an essential part of health and social care systems worldwide. As such, they may need professional support. AIM: The aim of this study was to describe informal caregivers' experiences and need for support from a tailored primary health care (PHC) unit. METHODS: This is a qualitative descriptive study using data collected from five semi-structured focus group discussions with a purposeful sample of 16 informal caregivers of older relatives. Respondents were recruited from a tailored PHC unit for people aged 75 years or older in a region in central Sweden. The data were analysed by qualitative content analysis with an abductive approach, based on the principles of the patient- and family-centred care framework. RESULTS: The overarching theme was 'Striving for partnership'. The findings indicate that informal caregivers to some extent felt supported by the healthcare professionals. However, the caregivers expressed a need to be further acknowledged by the professionals in order to participate in the care of their older relatives in the way they wanted. Moreover, insufficient information regarding the older adult's health condition and care provided by the professionals had a negative impact on the caregiver's participation in care. CONCLUSIONS: Informal caregivers have unmet needs for support and strive for a partnership with the PHC professionals. PHC professionals should be more attentive and invite informal caregivers to participate in the care of the older adult in order to meet their support needs and build an equal partnership. The patient- and family-centred care framework may be of guidance when providing care for older adults in a PHC context.

15.
Eur J Dermatol ; 34(1): 68-72, 2024 Feb 01.
Article in English | MEDLINE | ID: mdl-38557461

ABSTRACT

Oral targeted therapy with hedgehog pathway inhibitors has revolutionized the standard of care for patients with advanced basal cell carcinoma (BCC). These patients are frail and elderly, have various comorbidities, and receive pharmacological polytherapy. Moreover, adverse events may have a significant impact on therapeutic adherence, which must be managed by the clinician. We evaluated the impact of caregivers on the treatment of patients with advanced BCC in terms of continuation of therapy over time. All patients included in this observational prospective study had histologically confirmed metastatic or locally advanced BCC (LaBCC) and were treated with hedgehog pathway inhibitors from January 2016 to December 2021 at the Department of Dermatology at the University of Florence, Italy. The collected patient data included: age, sex, BCC site and area of spread; number of cycles, dose, duration and tolerability of therapy; marital status (single, divorced, married/living with a partner, widow/widower); and information such as living with someone, and the presence of any caregivers. Of the 34 patients included, 33 had LaBCC and one metastatic BCC. There were 11 females (32.4%) and 23 males (67.6%). Patients who were married or living with a caregiver -tolerated therapy better than single patients who lived alone. Indeed, patients with married/live-in caregivers and/or those with an adequate caregiver experienced greater therapeutic adherence and tolerance of adverse events. Given the greater therapeutic adherence of patients with live-in caregivers as partners, it is essential to consider patients' marital status. It is advisable to involve the caregiver early on, and there should be a training discussion on the various possible adverse events and the best way to mitigate them. Therapeutic success is linked not only to patients being informed but also to training of caregivers.


Subject(s)
Antineoplastic Agents , Carcinoma, Basal Cell , Skin Neoplasms , Male , Female , Humans , Aged , Skin Neoplasms/pathology , Prospective Studies , Caregivers , Hedgehog Proteins/metabolism , Pyridines/adverse effects , Carcinoma, Basal Cell/pathology , Antineoplastic Agents/therapeutic use , Anilides/therapeutic use
16.
Nihon Ronen Igakkai Zasshi ; 61(1): 45-53, 2024.
Article in Japanese | MEDLINE | ID: mdl-38583970

ABSTRACT

OBJECTIVE: To examine the relationship between the dissatisfaction of family caregivers with diabetes treatment and depressive symptoms among the elderly. METHODS: The subjects were diabetic patients of 65 years of age or older and their family caregivers, who were outpatients at Ise Red Cross Hospital. The Japanese version of the Patient Health Questionnaire 9, which consists of nine items, was used to measure depressive symptoms. The Japanese version of the Treatment Satisfaction Scale for Caregivers of Dependent Diabetic Patients (STCD2-J) was used to measure the satisfaction of family caregivers with diabetes treatment. A logistic regression analysis was performed using depressive symptoms as dependent variable, satisfaction of the family caregiver with diabetes treatment as an explanatory variable, and adjustment variables. RESULTS: In total, 272 patients were included in the analysis. Taking the quintiles of STCD2-J scores, the adjusted odds ratios for patient depressive symptoms in Q2 (27-29), Q3 (24-26), Q4 (22-23) and Q5 (14-21) based on Q1 (30-36) (the group with the highest STCD2-J scores) were 2.44 (95% confidence interval (CI), 0.69-8.61; P=0.163), 3.08 (95% CI, 0.93-10.12; P=0.063), 2.69 (95% CI, 0.68-10.65; P=0.156), and 4.54 (95% CI, 1.44-14.32; P=0.010), respectively. CONCLUSION: We found that family caregivers' decreased satisfaction with diabetes treatment was associated with depressive symptoms. It is important to alert primary care physicians about depressive symptoms when they see family caregivers who show decreased satisfaction with diabetes treatment.


Subject(s)
Caregivers , Diabetes Mellitus , Humans , Aged , Depression , Patient Satisfaction , Diabetes Mellitus/therapy , Personal Satisfaction
17.
Front Public Health ; 12: 1334842, 2024.
Article in English | MEDLINE | ID: mdl-38584929

ABSTRACT

Background: Cancer is a significant public health issue, causing various challenges for individuals affected by it. As cancer progresses, patients often become dependent on others for support. Family caregivers and members play a crucial role in the recovery and rehabilitation of these patients. However, caregivers themselves face numerous challenges throughout the course of their family member's illness. Exploring the experiences of family caregivers can inform long-term planning and supportive interventions to address their caregiving difficulties. This study reviews previous literature on caregiving outcomes. Method: This study presents a narrative review of qualitative studies, analyzing a total of 23 articles. The results were extracted and organized into subcategories. After revision by the research team, main categories were identified. These categories encompass both positive and negative outcomes of caregiving. Results: The findings of this review demonstrate that caring for a family member with cancer has significant implications for caregivers. These implications include: (A) Positive outcomes of caregiving (such as achieving self-management and balance, promoting kinship intimacy, finding meaning and purpose, and experiencing spiritual growth) and (B) Negative outcomes of caregiving (including care-related physical exhaustion, disruption of personal life plans, psycho-emotional consequences, and socio-economic burden). Conclusion: The results of this study highlight the challenges faced by family caregivers and emphasize the importance of addressing their needs within the healthcare system. By providing support and attention to their well-being, caregivers can enhance their resilience and adaptability in managing caregiving difficulties.


Subject(s)
Caregivers , Neoplasms , Humans , Caregivers/psychology , Family/psychology , Qualitative Research
18.
Front Neurol ; 15: 1349501, 2024.
Article in English | MEDLINE | ID: mdl-38585358

ABSTRACT

Introduction: Parents of children with neuromuscular diseases experience multiple difficulties in their daily lives that affect their physical and psychological health. The risk factors for these health issues have not been sufficiently investigated. Therefore, the aim of this study was to analyze the potential predictors of overload in these parents, including QoL, somatic symptomatology, life satisfaction, psychological adjustment and certain sociodemographic variables. Methods: A cross-sectional research study was conducted among parents who are caregivers for children with NMD in Spain. A convenience sample of 110 parents who were contacted by associations and hospitals was used. Variables were evaluated using the sociodemographic questionnaire, CarerQol-7D, PHQ-15, Barthel Index, Psychological Adaptation Scale, Zarit Overload Scale and Satisfaction with Life Scale. Results: One of the most relevant findings of the present study is the identification of 3 overload groups (mild to moderate, moderate to severe, and severe overload) based on life satisfaction and somatic symptom scores within the predictive model of the discriminate analysis. Wilk's lambda of the discriminant function was 0.568, χ2 (2, n = 55) = 8.815, p < 0.001. Discussion: This study presents a model that reveals the influence of unemployment, having a child with a severe level of dependency, the presence of somatic symptomatology and life satisfaction on caregiver overload. Likewise, the caregiver's self-esteem could be a protective factor against overload.

19.
Pan Afr Med J ; 47: 35, 2024.
Article in English | MEDLINE | ID: mdl-38586066

ABSTRACT

Introduction: childhood deaths from preventable causes remain high in Nigeria. Although vaccines are available to combat many of these diseases, vaccine coverage remains low in many at-risk communities. With this study, we aimed to determine factors that might have impacted the use of immunization services in Ibadan, the capital of Oyo State in southwest Nigeria. Methods: we conducted a community-based cross-sectional study in a peri-urban local government area in Ibadan using a multi-stage cluster sampling technique to identify respondents for this study. The interviewer-administered questionnaire was used to obtain information on respondents and child socio-demographic details. We reviewed the child´s vaccine card to determine vaccine status. Data were analyzed using STATA version 14 at a 5% level of significance. Results: of the 265 children aged 12 to 59 months who had their vaccine cards appropriately filled, only 65.3% (n=173) received all basic vaccines, while 90.2% (n=239) and 86.8% (n=230) received 3 doses of pentavalent vaccine (PENTA) and pneumococcal conjugate vaccines (PCV-10) respectively. We found a significant difference in the completion of basic vaccination according to the caregiver´s place of residence and the mother´s educational level. Access-related barriers were frequently reported (n=24, 54.5%) as reasons for missing a due vaccine. Conclusion: improvement in vaccine coverage in this setting is necessary. Targeted health information for mothers may be a cost-efficient and sustainable approach to improve vaccine coverage for under-five children.


Subject(s)
Immunization Programs , Local Government , Female , Child , Humans , Infant , Cross-Sectional Studies , Nigeria , Vaccination , Immunization , Vaccines, Conjugate
20.
Acta Myol ; 43(1): 16-20, 2024.
Article in English | MEDLINE | ID: mdl-38586165

ABSTRACT

The Quality of Life (QOL) is influenced by several disease-related factors, support, resources, expectations, and aspirations, within the disease-related concepts. The Individualized Neuromuscular Quality of Life (INQoL) is a validated muscle disease-specific measure of the QoL developed from the experiences of patients with muscle disease and can be used for people or large cohorts. This review of QoL in transportinopathy cases reports adjustments in an autosomal dominant (AD) LGMD, and a comparison is made with autosomal recessive (AR) LGMD evaluated by INQoL. The locus for this form of LGMD with AD inheritance was found on chromosome 7, and then identification of the gene and its encoded protein (transportin-3) was obtained in 2013. A large three-generation family with several branches in Spain and Italy was previously reported and described in detail. Some patients had an early onset weakness, but others had an adult onset of the disease, as late as 58 years. The severity of the appearance of the phenotype is correlated with QoL and progresses with age. Assessing the impact on their QoL is particularly relevant to know whether the treatment is reducing their suffering.


Subject(s)
Muscular Dystrophies, Limb-Girdle , Adult , Humans , Muscular Dystrophies, Limb-Girdle/diagnosis , Muscular Dystrophies, Limb-Girdle/genetics , Quality of Life , Phenotype , Inheritance Patterns , Italy
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