Respective Caregivers Research Articles

Omicron-COVID-19-Related Knowledge in Parkinson's Disease Patients and Their Caregivers: A Cross-sectional Study.

The Omicron variant of SARS-CoV-2 (COVID-19) became the global community's third major cause of worry. In the current study, we deployed a self-reported survey questionnaire to investigate the degree of comprehension, awareness and perception of the Omicron variant of COVID-19 in patients with Parkinson's disease (PD) and their respective caregivers (CGs). Using a standardised questionnaire, we conducted a prospective study on PD patients attending the neurology outpatient department prior to and during the COVID-19 pandemic. The study period was between February and August of 2022. A total of 114 CGs and 134 disease-affected patients were evaluated. Approximately 1.8% of the CGs and 4.5% of the patients contracted the Omicron-COVID-19. Over half of the patients (77.6%) were aware of the Omicron variant, and approximately 40.3% of them were aware of its symptoms. After receiving the Covid immunisation, patients (94.02%) reported no change in symptoms. The percentage of patients and CGs who had no symptoms of the viral infection and were not even got tested ever was 95.5% and 98.2%, respectively. Further, patients (95.5%) opted for the 'offline' as a preferred mode of consultation, citing the precision of treatment being the main reason. No definite correlation between the Omicron variant infection and symptoms of PD could be established. The awareness regarding Omicron variant was largely unknown. More patient-centred research on larger population groups, incorporating literate and urban groups would unravel the knowledge gaps.

P34: Pharmacological Treatment Use for Dementia in the Elderly Population from the National Report on Dementia in Brazil (ReNaDe): Associated Aspects

Objectives: General To delineate the epidemiological and clinical profile of elderly individuals diagnosed with dementia who use antidementia drugs and are followed up in the Unified Health System (SUS), comparing them with a group that does not undergo pharmacological treatment, as well as the sociodemographic characteristics of their respective caregivers.Specific1.Compare sociodemographic (age, sex, education, marital status, region), clinical (comorbidities, stage of dementia, most common symptoms, dementia medication used, use of other psychotropics) characteristics and caregiver profile (education, age, mental illness, formality of care, caregiver burden) between the group of people receiving pharmacological treatment for dementia and the group, also diagnosed with dementia, but not using medication for it.2.Test whether the geographic region is a modifying effect of the associations found in specific Objectives item 1.3.Identify, among individuals using psychotropic drugs for dementia, the type of medication used and at what stage of the disease it was introduced and is being used, and how access to the medication was achieved— purchased or dispensed by the SUS pharmacy.Methods: This is a retrospective, cross-sectional, observational, case-control, and non- randomized study conducted in the five geopolitical regions of Brazil, including a total of 17 cities of different sizes (small, medium, and large). All 140 people interviewed and diagnosed with dementia, as well as their 140 respective caregivers, were included. The following manuals and scales were used for evaluation: the Clinical Dementia Rating (CDR) - a questionnaire for clinical assessment of dementia, the Neuropsychiatry Inventory-Questionnaire (NPI-Q) - used for assessing neuropsychiatric symptoms, the Johns Hopkins Dementia Care Needs Assessment (JHDCNA 2.0) - an instrument that assesses the care needs of people with dementia and their caregivers, the Montreal Cognitive Assessment (MoCA) - a cognitive screening instrument, and DEMQOL. Data will be grouped for analysis of grouped and cumulative frequency and correlations between variables established using Microsoft Excel software. Statistical data will be processed with the STARTA software.Results: The present study is under statistical analysis, with completion expected in June. The following hypotheses are intended to be investigated:1.Patients using pharmacological treatment for dementia with more clinical comorbidities use more anticholinesterase drugs.2.There is an association between the prescription of pharmacological treatment for dementia and the region of the country.3.Patients taking anticholinesterase drugs exhibit fewer neuropsychiatric symptoms compared to the population not using such medication and classified at the same stage of dementia.4.Caregivers of people with dementia using pharmacological treatment for it are less burdened than caregivers of the other group not using pharmacological treatment for it.Conclusions: The exponential increase in dementia cases, in light of the global aging population, underscores the importance of investigating the factors associated with the pharmacological treatment of elderly people with dementia—to mitigate the obstacles that hinder adequate treatment.

Psychosocial burden in mothers with epilepsy and their caregiver: Feasibility and preliminary results of a digital screening procedure

ObjectiveThe present study aims to evaluate the feasibility of utilizing a digital procedure to screen for anxiety and depression as well as impairments in psychosocial aspects, such as social support, social activity and quality of life (QoL) in women with epilepsy (WWE) after childbirth. Furthermore, the study intends to digitally screen for burden of the respective caregivers in WWE compared to a healthy control group. Materials and methodsThis comparative cross-sectional study was conducted in the post-partum period on 30 WWE and 33 healthy controls who gave birth between 01/2018 and 05/2021. Additionally, 24 caregivers of WWE and 26 caregivers of healthy mothers took part in this study. Information on psychosocial health and psychosocial burden was collected digitally using the short version of the Social Support Questionnaire, the Social Activity Self-Report Scale and the Hospital Anxiety and Depression Scale. The caregiver burden was digitally assessed with the Zarit Burden Scale in its German adaptation (i.e., Zarit Burden Interview and the Family Burden Questionnaire). Furthermore, QoL was assessed with the QOLIE-31 (Quality of Life in Epilepsy Inventory) in WWE and with the Life Satisfaction Questionnaire in healthy controls. ResultsWhen comparing WWE and healthy controls, the groups were comparable on psychosocial aspects, such as self-reported social support, anxiety, depression and social activity, when assessed with self-report measures in a digital screening procedure.Although not significantly different between groups, anxiety, depression, self-reported social support and social activity were correlated with overall QoL in both, WWE and healthy controls.Caregivers of WWE and healthy controls were neither significantly different in their objective burden nor in their subjective burden as reported in digitally applied self-report measures. ConclusionAlthough not significantly different between groups, given the correlation between psychosocial aspects and QoL, it is worthwhile to include these aspects in standard clinical screening extending beyond the screening of anxiety and depression in WWE.Overall, the preliminary psychosocial data presented in this study suggest that a digital assessment of psychosocial burden seems reasonable in WWE and warrants integration into further research and clinical practice.Nevertheless, since no significant differences concerning psychosocial aspects were found in the present study, one may argue that highly specialized clinical care, as provided in the present study, may counteract potential psychosocial impairment experienced by WWE who do not receive such specialized care.Hence, further investigations outside of specialized outpatient clinics as well as prospective investigations of subjective factors that may dynamically change during pregnancy ought to be addressed in clinical practice and research for improving care during and after pregnancy in WWE.

THE UNSEEN: BURDEN IN CAREGIVERS OF PATIENTS WITH SCHIZOPHRENIA IN A TERTIARY CARE INSTITUTE

Objectives: This study aims to evaluate the prevalence of caregiver burden in patients with schizophrenia using the burden assessment schedule (BAS). Methods: A cross-sectional study was conducted with 100 patients diagnosed with schizophrenia and their respective caregivers from the patients admitted in the male and female wards of the psychiatric department to evaluate caregiver burden. The BAS is used to determine the burden on caregivers of schizophrenic patients. Results: This study revealed that 51% of the caregivers had experienced moderate levels of burden. Older caregivers experienced a significantly higher burden (p=0.03), whereas residence and educational status had no significant effect on the burden. The burden was highest among parents, followed by spouses, and the burden is positively correlated with gender and older caregivers. Conclusion: It is evident that an unaddressed burden exists among the caregivers of patients who have mental illness. It is crucial to develop strategies to lessen the load of caregiving and implement them effectively. Counseling and psychological support, though they do not directly mitigate the suffering of patients, may help improve the quality of care given by them to individuals with schizophrenia, thus overall improving the mental well-being of the whole family.

“Communicative competence assessment of the person with aphasia caregiver: Standardization of the ACCA-CHECKLIST”

ABSTRACT Aphasia constitutes a very complex clinical entity that requires a “competent” caregiver to interact with the person with aphasia (PWA). The literature lacks a valid and reliable set of standardized tools which can offer objective and quantifiable data of a caregiver’s communicative competence. The aim of the study was to develop, standardize and validate an evaluation tool suited to measur the caregivers’ competence in communicating with family members affected by aphasic disorders. Forty-two patients with aphasia and their respective caregivers were enrolled in the study. Caregivers’ communicative competence was assessed through a new evaluation tool called ACCA-cl. Aphasia severity and functional communication abilities of the PWA were also investigated. Our data showed encouraging results regarding the reliability and the validity of the ACCA-cl scale in detecting the caregiver’s communicative competence, especially as far as verbal content was considered. This scale can also be used to assess the improvement achieved by the caregiver after a communication training. The analysis provides encouraging findings for verbal content scales of the ACCA-cl and its possible use in clinical settings as a quantitative tool for detecting changes induced by the educational method of the caregiver. The tool is currently available in Italian.

Network Analysis of Dyadic Burdens, Psychological Disorders, Psychological Resilience, and Illness- or Caregiving-Related Beliefs in Patients With Chronic Heart Failure and Their Caregivers.

Previous research has examined the dyadic health components consisting of dyadic burdens, psychological disorders, psychological resilience, and illness- or caregiving-related beliefs independently from each other in patients with chronic heart failure (CHF) and their caregivers, but there is a need for further insights into their interconnections. We aimed to explore the interconnections among dyadic health components in patients with CHF and their caregivers. We conducted a cross-sectional study, recruiting in a total of 355 patients with CHF and their 355 respective caregivers, totaling 710 individuals across the dyads. Assessments were conducted on symptom burden, caregiver burden, anxiety, depression, psychological resilience, perceived control, and caregiver self-efficacy. Network analysis was used regarding these constructs as nodes and their associations as edges. The strongest edge weight was observed between patients' anxiety and depression, followed by caregivers' anxiety and depression. Patients' depression exhibited the strongest edge weight with dyadic burdens. Caregiver burden was independently correlated with all nodes. Patients' symptom burden had fewer associations with the nodes within the caregiver community. Patients' anxiety, depression, and psychological resilience demonstrated the strongest and most influential correlations with other nodes. The findings illustrated extensive interconnections among dyadic health components in CHF dyads. These findings underscored the significance of managing and intervening with patients and caregivers as a dyadic whole. Given the strong and frequent associations of patients' anxiety, depression, and psychological resilience with other nodes in the network, interventions targeting these nodes may enhance the overall network health of CHF dyads.

The Anxiety Burden in Patients with Chronic Intestinal Failure on Long-Term Parenteral Nutrition and in Their Caregivers.

Background and aims: Home parenteral nutrition (HPN) is a life-saving treatment for patients affected by chronic intestinal failure (CIF). Both this clinical condition and its therapy require radical lifestyle modifications, affecting life quality and psychological balance in patients as well as family members. Patient psychological burden has rarely been taken into consideration, not to mention that of caregivers. This study aims to evaluate the levels of anxiety in CIF patients on HPN, and their caregivers, consequently determining their impact on the psychological and physical aspects. Methods: After a brief introductory interview, adult patients on HPN for CIF and their caregivers were asked to fill in the HAMA-A questionnaire. Results: Fifty patients and their respective caregivers were enrolled. Mean HAMA-A scores were similar in patients and caregivers and testified the presence of a mild to severe impact of CIF and HPN in both groups, with a significantly higher impact on female patients and caregivers. After adjusting age, education level, duration of CIF and HPN dependence, and degree of kinship, no differences were revealed in the scores. Conclusions: The study confirms that CIF patients on HPN and their caregivers have a significant anxiety burden independently from the duration of the disease, therefore needing appropriate support.

Care burden, fatigue, and family functioning among family caregivers of older adults with Alzheimer’s disease: A cross-sectional study

This study aimed to evaluate the relationship between care burden, fatigue, and family functioning among family caregivers of older adults with Alzheimer’s disease (AD). This study adopts a cross-sectional research design, employing an available sampling method. The sample comprises 150 caregivers of elderly individuals diagnosed with AD, recruited from the elderly clinic overseen by the Birjand Welfare Organization. Data collection encompassed the administration of multiple instruments, including a demographics form, Zarit Burden Interview, Piper Fatigue Scale, and APGAR family functioning questionnaires. A total of 150 elderly individuals diagnosed with AD, along with their respective caregivers, were included in this study. The mean score for caregiver burden was 24.24 (SD=10.18), fatigue was 32.73 (SD=22.76), and family functioning was 6.58 (SD=7.37). A negative and significant correlation was observed between caregiver burden and family functioning (r=-0.693, P<0.05). Furthermore, positive and significant correlations were found between caregiver burden and behavioral fatigue (r=0.720, P<0.05), affective fatigue (r=0.674, P<0.05), as well as sensory cognitive fatigue (r=0.484, P<0.05). The association between behavioral fatigue and affective fatigue revealed a positive and significant correlation (r=0.875, P<0.05), as did the correlation between behavioral fatigue and sensory-cognitive fatigue (r=0.488, P<0.05). Additionally, a positive and significant relationship was observed between affective fatigue and sensory-cognitive fatigue (r=0.478, P<0.05). Considering the pronounced relationship between caregiver burden, fatigue, and family functioning, these factors hold utility for researchers and policymakers in the realms of gerontology and intervention planning, serving as pivotal metrics for assessment and intervention design.

Long-term quality of life, psychological distress, and caregiver burden in octogenarians with LVAD: A single-centre experience.

With the general population aging, both life expectancy and the number of left ventricular assist device (LVAD) implantations in elderly patients are growing. Nevertheless, their perceived long-term quality of life, including psychological aspects, coupled with the respective caregiver's burden, remain under-reported. In light of the rising number of octogenarians with LVAD who necessitate broader healthcare provider involvement, we assessed the long-term quality of life, as defined by both the 36-item short-form health (SF-36) survey and the EuroQol 5 dimensions, 5-level questionnaire (EQ-5D-5L)-including the visual analog scale-in octogenarian LVAD patients who had received treatment at our institution. Additionally, we evaluated the psychological health of octogenarian LVAD patients using the psychological general well-being index (PGWBI), alongside their caregivers' well-being through the 22-item version of the Zarit Burden Interview (ZBI). Of 12 octogenarian LVAD patients, 5 were alive and willing to answer questionnaires. Mean age at implant was 74 ± 2 years. Median follow-up was 2464 (IQR = 2375-2745) days. Although variable, the degree of health and psychological well-being perceived by octogenarian patients with LVAD was "good." Interestingly, the burden of assistance reported by caregivers, though relevant, was greatly varied, suggesting the need to better define and address psychological long-term aspects related to LVAD implantation for both patients and caregivers with a broad-spectrum approach.

Investigating the Effectiveness of a Virtual Family-centered Support Intervention on the Mental Health of Hemodialysis Patients and their Family Caregivers During the COVID-19 Pandemic

Aim This study aimed to assess the effectiveness of a family-centered support intervention utilizing virtual education on the mental health of hemodialysis patients and their family caregivers amidst the COVID-19 pandemic. Background Patients undergoing hemodialysis and their family caregivers may experience mental health disruptions. Methods In this quasi-experimental study, 30 family caregivers of hemodialysis patients who visited the hemodialysis center of the 22nd-Bahman Hospital of Khaf in 2022 were selected using convenience sampling. All patients and family caregivers completed a demographic characteristics form and a mental health scale over the phone at baseline. The experimental group received targeted mental health education content for four weeks on the Eitaa social media platform. At this time, the mental health questionnaire was completed once more over the phone for all patients and their family caregivers. Independent t-tests and paired t-tests were used to analyze the data in SPSS-22. The significance level was set to p <0.05. Results The mean age values of the patients and family caregivers were 47.63±8.36 and 33.53±4.86 years, respectively. Prior to the intervention, there was no significant difference (p <0.05) in the mean scores of mental health and its components between the experimental and control groups. Following the intervention, statistically significant reductions were observed in the scores of both the patients and caregivers of the experimental group compared to the controls (p <0.001). Conclusion The virtual family-centered support intervention could positively impact the mental health of hemodialysis patients and their family caregivers. Thus, the present intervention is suggested as a viable program to enhance the mental health of this group of patients and their respective caregivers.

A wellbeing program to promote mental health in paediatric burn patients: Study protocol.

One of the most traumatic injuries a child can experience is a severe burn. Despite improvements in medical treatments which have led to better physical outcomes and reduced mortality rates for paediatric burns patients, the psychological impact associated with experiencing such a traumatic injury has mostly been overlooked. This is concerning given the high incidence of psychopathology amongst paediatric burn survivors. This project will aim to pilot test and evaluate a co-designed trauma-focused intervention to support resilience and promote positive mental health in children and adolescents who have sustained an acute burn injury. Our first objective is to collect pilot data to evaluate the efficacy of the intervention and to inform the design of future trauma-focussed interventions. Our second objective is to collect pilot data to determine the appropriateness of the developed intervention by investigating the changes in mental health indicators pre- and post-intervention. This will inform the design of future interventions. This pilot intervention study will recruit 40 children aged between 6-17 years who have sustained an acute burn injury and their respective caregivers. These participants will have attended the Stan Perron Centre of Excellence for Childhood Burns at Perth Children's Hospital. Participants will attend a 45-minute weekly or fortnightly session for six weeks that involves building skills around information gathering, managing reactions (behaviours and thoughts), identifying, and bolstering coping skills, problem solving and preventing setbacks. The potential effects and feasibility of our intervention will be assessed through a range of age-appropriate screening measures which will assess social behaviours, personal qualities, mental health and/or resilience. Assessments will be administered at baseline, immediately post-intervention, at 6- and 12-months post-intervention. The results of this study will lay the foundation for an evidence-based, trauma-informed approach to clinical care for paediatric burn survivors and their families in Western Australia. This will have important implications for the design of future support offered to children with and beyond burn injuries, and other medical trauma populations.

SLC6A4 gene variants moderate associations between childhood food insecurity and adolescent mental health.

Food insecurity is a persistent concern in the United States and has been shown to affect child mental health and behavior. The SLC6A4 gene has been indicated as a moderator of the effects of chronic stress on anxiety in adolescents aged 14-21. However, it is unclear if SLC6A4 may also play a role in the effects of childhood food insecurity, a form of chronic stress, on adolescent mental health. This study aimed to identify effects of food insecurity on adolescents' mental health and delinquent behavior when both mom and child go hungry in the child's early years, and the potential interaction with SLC6A4 variants (SS/LL). The data and sample for this research are from the Future of Families and Child Wellbeing Study. The cohort consists of 4898 children (age 1-15 years, male=47%, African American=50%) and their respective caregivers sampled from large cities in the United States from 1998 to 2000. The SLC6A4 serotonin transporter short/short allele emerged statistically significant as a moderator of childhood food insecurity and adolescent mental health. Specifically, the presence of the short/short allele increased anxiety symptoms in adolescents with exposure to food insecurity in childhood. The SLC6A4 short/short allele amplifies risk of anxiety-related mental illness when children experience food insecurity. The gene-environment interaction provides insight into the mechanistic pathway of the effects of poverty-related adversity, such as food insecurity, on developmental trajectories of mental health.

Participant and caregiver perspectives on health feedback from a healthy lifestyle check.

The usual output following health consultations from paediatric services is a clinical letter to the referring professional or primary care provider, with a copy sent to the patient's caregiver. There is little research on how patients and caregivers perceive the letter content. We aimed to: first understand child, young people and caregiver experiences of and preferences for receiving a health feedback letter about the child/young person's health measures within a healthy lifestyle programme; and second to provide a set of recommendations for designing letters to children, young people and their families within a healthy lifestyle programme. This qualitative study, informed by Kaupapa Māori principles, included focus groups of children aged 5-11 years and young people aged 12-18 years who were participants in a healthy lifestyle programme in Taranaki, Aotearoa New Zealand and of their respective caregivers (total n = 47). Discussions were audio-recorded, transcribed and analysed using thematic analysis. Key themes were identified: letters sometimes acted as 'discourses of disempowerment'-some participants experienced a lack of safety, depersonalisation with medical jargon and 'feeling like a number'. Participants described the need for acknowledgement and affirmation in written communication-health feedback should include validation, choice regarding content, respectful tone and a strengths-based approach to health messages. Letters to referrers, copied to families, can be perceived as disempowering, and participant and caregiver perspectives of content should be considered. This study challenges conventional practice in communicating health feedback with broader implications for written communication in healthcare. We propose separate letters aimed at the child/young person and their caregiver that offer choice in the information they receive. The administrative burden of multiple letters can be mitigated by advances in digital health. This study originated in response to feedback from service users that current health feedback was not meeting their needs or expectations. Patient perspectives, especially from children, are rarely considered in the generation of clinic letters from health professionals. Participants were child participants in the community-based clinical service and their caregivers, and care was taken to represent the demographic backgrounds of service users. Collection and interpretation of Māori data were led by researchers who were local community members to ensure prioritisation and preservation of participant voice. Where possible, results are illustrated in the text by direct quotes from participants, whose identities are protected with a pseudonym.

Examining Coping Strategies and Their Relation with Anxiety: Implications for Children Diagnosed with Cancer or Type 1 Diabetes and Their Caregivers.

The onset of chronic diseases in childhood represents a stressful event for both young patients and their caregivers. In this context, coping strategies play a fundamental role in dealing with illness-related challenges. Although numerous studies have explored coping strategies employed by parents of children with chronic diseases, there remains a gap in the understanding of children's coping strategies and their correlation with their and their parents' anxiety. This study aims to investigate coping strategies and their interaction with anxiety in groups of young patients with cancer, type 1 diabetes (T1D), and their respective caregivers, in comparison to healthy children and caregivers. We recruited a total of 61 control children, 33 with cancer, and 56 with T1D, 7 to 15 years old, along with their mothers. Each participant completed a customized survey and standardized questionnaires. No significant differences emerged in coping strategies used by children among the different groups. However, when examining the association between coping strategy and anxiety, we found specific patterns of interaction between children's use of coping strategies and their and their mothers' anxiety levels. This study underscores the importance of an illness-specific approach to gain deeper insights into this topic and develop targeted interventions aimed at enhancing the psychological well-being of these vulnerable populations.

Translation to Portuguese and cross-cultural adaptation of the epilepsy transition readiness checklist for use in Brazil

ObjectivesPlanning for the child and adolescent to have a safe handling in the epilepsy transition process is essential. In this work, the authors translated the “Readiness Checklists” and applied them to a group of patients and their respective caregivers in the transition process to assess the possibility of using them as a monitoring and instructional instrument. MethodsThe “Readiness Checklists” were applied to thirty adolescents with epilepsy and their caregivers. The original English version of this instrument underwent a process of translation and cultural adaptation by a translator with knowledge of English and epilepsy. Subsequently, it was carried out the back-translation and the Portuguese version was compared to the original, analyzing discrepancies, thus obtaining the final version for the Brazilian population. ResultsParticipants were able to answer the questions. In four questions there was an association between the teenagers' educational level and the response pattern to the questionnaires. The authors found a strong positive correlation between the responses of adolescents and caregivers (RhoSpearman = 0.837; p < 0.001). The application of the questionnaire by the health team was feasible for all interviewed patients and their respective caregivers. ConclusionThe translation and application of the “Readiness Checklists” is feasible in Portuguese. Patients with lower educational levels felt less prepared for the transition than patients with higher educational levels, independently of age. Adolescents and caregivers showed similar perceptions regarding patients' abilities. The lists can be very useful tools to assess and plan the follow-up of the population of patients with epilepsy in the process of transition.

A Qualitative Study on Nutritional Awareness Among Parents of Pediatric Recipients of Liver or Kidney Transplants.

The primary aim of this study was to examine the extent of nutritional awareness concerning dietary requisites within a cohort comprising pediatric recipients of liver and kidney transplants, along with their respective caregivers. The overarching goal was to establish a foundation for enhancing the dietary nutrition of this specific population. This was a qualitative research study, involving in-depth interviews and subsequent qualitative data analysis. Our sample included pediatric patients in a specific age range who had undergone a liver or kidney transplant, as well as their parents. The data analysis technique we used was content analysis. The survey focused on knowledge of dietary requirements and restrictions, nutritional needs, and adherence to daily dietary requirements among pediatric patients and their respective caregivers. Approximately 30% of the parents lacked relevant nutritional awareness, 30% relied on a single source for acquiring nutritional knowledge, and 40% expressed a considerable need for nutritional guidance. Our findings revealed a deficiency in the understanding of nutritional and dietary requirements for children who have undergone a liver or kidney transplant. Their nutrient intake was unbalanced, and their dietary habits were irregular, highlighting the need for better nutritional guidance and monitoring. The nutritional awareness and knowledge of dietary requirements among pediatric liver and kidney transplant recipients and their care providers are inadequate. Medical professionals are urged to tackle this concern by imparting comprehensive education to parents regarding the nutritional prerequisites essential for their children post-transplant. This approach empowers parents to implement requisite dietary modifications effectively. Furthermore, healthcare institutions should augment the nutritional proficiency of their medical staff through meticulously structured training initiatives.

The Impact of Caregiver/Care-Receiver Co-Treatment in a Therapeutic Lifestyle Intervention for Chronic Spinal Cord Injury: A Comparative Case Series.

This study is a prospective comparative case series analysing the differential impacts of a therapeutic lifestyle intervention (TLI) on individuals with spinal cord injury (SCI) and their caregivers. The primary objective was to assess changes across several health metrics predictive of cardio metabolic disease (CMD), fitness, and quality of life, in dyadic partners and between 2 separate cases. SCI participants and their respective caregivers, forming 10 dyads, were included in the study. Dyads were randomly assigned to two distinct case scenarios: Case 1, where both dyadic partners received TLI; and Case 2, where only the SCI partner received the intervention. Each case series comprised five dyads. TLI constituted a rigorous 6-month program consisting of exercise, adherence to a Mediterranean diet, and behavioural support. Across cases, notable improvements were observed in body mass, and strength among SCI partners; and reductions in body mass and fasting glucose, and improved mental well-being was observed in caregiver partners. Dyadic interaction analysis found that insulin, HOMA, HDL, and mental health improvements in SCI were strongly linked to improvements in caregiver when both dyadic partners received TLI. We conclude that TLI co-treatment for dyadic partners, including exercise, nutrition, and behaviour modification, improves health outcomes related to CMD risks and quality of life in both populations. ClinicalTrials.gov, ID: NCT02853149 Registered August 2, 2016.

Adaptation and reliability of tests of functional mobility and muscle strength using telehealth for older people with dementia

Objective: Adapt functional mobility and muscle strength tests for older people with dementia to be performed remotely in the home environment; determine intra-rater and inter-rater reliability of functional mobility and strength tests for older people with dementia; and correlate the performance on the physical tests executed remotely and the Timed Up and Go (TUG) test, which was validated remotely in healthy older people. Methods: We included 43 people with dementia. The Short Physical Performance Battery (SPPB), TUG, TUG Dual Task (TUG-DT), and 30-Second Sit-to-Stand Test (SST30s) were performed through videocalls. Test performance was documented to facilitate the subsequent determination of inter- and intra-rater reliability. The intra-rater reliability was determined at a 2-week interval from the real-time videocall to analysis of the recording. Results: Intra-rater reliability ranged from good to excellent for all tests performed (ICC 0.862–1.000). Inter-rater reliability values were fair for gait speed (ICC = 0.223), moderate for some of the SPPB items (ICC = 0.706–0.801), good for the SPPB two-foot balance (ICC = 0.860) and the SPPB total score (ICC = 0.831), and excellent for the rest of the tests. Conclusion: Functional mobility and muscle strength tests proved reliable and feasible for remote, at-home assessments of older people with dementia when assisted by their respective caregivers, providing an additional alternative for assessment of this patient population.

Health Literacy in a scar treatment portal website: Can Personal and Public Involvement help in detecting the benefits and pitfalls?

Introduction: Pathological Scarring (PS) as a result of surgical intervention, burn injury or trauma remains a real concern and clinical challenge, causing physical, psychological and socio-economical burden.&#x0D; Over 100 million people worldwide suffer from PS. Many of these people search for solutions, but except from unvalidated internet sources, relevant information is lacking. To guide these people in their search we developed an informative website from an interprofessional point of view and with the perspective of Personal and Public Involvement (PPI). This website provides evidence based information on a wide variety of treatment options. Patients can perform a search for suitable treatments via scar characteristics or scar types.&#x0D; To be successful in this journey, we decided to involve patients in the development of this website. The aim of our study is to investigate whether this website meets the relevant health literate criteria and can be divided into 3 questions:&#x0D; 1.Does this website increase the patients’ knowledge of scar therapies?&#x0D; 2.Do patient and caregiver find the same most suitable treatments after performing a search as above mentioned? Is the caregiver aware of the patients’ health care demand?&#x0D; 3.Is the content of the website accessible to people with various levels of health literacy?&#x0D; Method: Patients will complete a pre-use online/paper questionnaire to assess their awareness about possible therapeutic solutions to improve their scars. After visiting the website and performing the above mentioned search, patients will receive a post-use online/paper questionnaire to assess changes in information knowledge together with a health literacy patient survey and patient feedback form to evaluate the feasibility of the search and health literate language used. Patients and their respective caregivers will both perform the same search to investigate the differences in their outcome. Patients and caregivers will start the search from their respective points of view and the aim is to detect whether they end up with the same therapeutic solutions.&#x0D; &#x0D; Results: The aim is to recruit 40 patients of different gender identities, age and digital literacy together with their caregivers. At the ICIC2023 conference, we will present the preliminary results of this study.&#x0D; Discussion/Conclusion: Previous research in other health domains reported that medical consultations were usually too short to elaborate a meaningful representation of a patients’ health problem. When consulting an informative website with understandable content, on the contrary, people could take all the time they needed to navigate in the website and to confront their situation with the information provided. By providing them this modality, they could improve their self-comprehension which could set appropriate expectations and avoid misunderstandings to achieve realistic outcomes. Our study aims to confirm these findings in the domain of PS by listing the benefits and pitfalls of such an informative website and detect the factors influencing the patients motivation to make use of such a website.

Comparative cross-sectional study of socio-psychological orthodontic needs and oral habits in Autism Spectrum Disorder.

This cross-sectional study analyzed the socio-psychological need for orthodontic treatment in children and adolescents with and without Autism Spectrum Disorder (ASD) and its association with deleterious oral habits. Children/adolescents aged 6-14 years old, with and without ASD, and their respective caregivers were included. Caregivers completed a questionnaire addressing children and adolescents' deleterious oral habits. To assess the socio-psychological need for orthodontic treatment, we utilized the aesthetic component of the Index of Orthodontic Treatment Needs (IOTN). Caregivers and an orthodontist independently used the standardized IOTN aesthetic attractiveness scale containing ten intraoral photographs and compared them with the most similar condition of the child/adolescent. Data collection occurred at two universities in northeastern Brazil and at an ASD referral center. Statistical analyses encompassed descriptive statistics, Shapiro-Wilk, Kruskal-Wallis, Mann-Whitney, and Chi-squared tests with linear trend (α5%). The study involved 144 participants, evenly divided into two groups (ASD and non-ASN). The ASD group showed higher average IOTN-AC scores as evaluated by both professionals (mean score=4.78 [±2.34], p=.182) and caregivers (mean score=4.31[±2.71], p=.992). Caregivers reported notably elevated IOTN-AC scores in cases where onychophagy was absent (p=.049). Patients with ASD are indicated as having a relatively higher socio-psychological need for orthodontic treatment.