Racial disparities in subjective cognitive decline and its implications among Alzheimer's caretakers.

BACKGROUND/OBJECTIVE: Alzheimer's disease is a prominent neurodegenerative disorder characterized by cognitive decline and memory loss. Variations in subjective cognitive decline among Alzheimer's patients, often reported by caregiver, may stem from cultural, socioeconomic, healthcare access, and genetic factors. This study investigates racial disparities in subjective cognitive decline reported by caregivers and their implications. METHODS: In this study, data from 12,627 Alzheimer's caretakers from the CDC's Alzheimer's Disease and Healthy Aging Data Portal were analyzed using JMP software. Caregivers reported patients' cognitive decline for various racial categories: Asian/Pacific Islander, Black, Hispanic, Native American/Native Alaskan, and White. Fit model tests and distribution analyses were employed to assess disparities in symptom severity. The study focused on four key questions regarding symptom prevalence and healthcare communication to assess the degree of symptoms the patients were experiencing. RESULTS: Significant disparities in symptom severity reported by Alzheimer's caretakers were observed among the racial groups analyzed. The symptom severity ranked from least to most severe is the following: White, Asian/Pacific Islander, Black, Native American/Native Alaskan, and Hispanic patients. There was variance when it came to communication with healthcare providers, as the Asian population had the lowest communication rates. These findings underscore the need for targeted interventions considering cultural differences. It is important that tailoring healthcare approaches for different racial backgrounds is happening as a remedy to this gap in communication. CONCLUSION: Due to cultural, socioeconomic, genetic factors, and others, there were significant observed disparities. Tailoring interventions to these diverse populations is crucial to address these inequities.

Personalization of SUDEP risk: A survey of transient subclinical comorbid changes.

OBJECTIVE: Preclinical data report within subject modifiable ailments emerge weeks prior to SUDEP, including sleep disorders and cardiorespiratory changes; findings which support anecdotal clinical data. Here, we bridge preclinical findings with future clinical/preclinical studies, and survey whether caretakers or family members of victims noticed transient changes prior to SUDEP. The aim of this pilot study is to identify potential modifiable changes that may synergistically increase SUDEP risk for future research. METHODS: A mobile electronic survey was posted on SUDEP community websites. The survey queried whether changes in seizures, sleep, physical well-being, emotional well-being, cognition, breathing, or heart rate were noticed before SUDEP. RESULTS: The most profound finding was that 85% of victims had multiple transient ailments prior to SUDEP. Changes in seizures (28/54), and sleep (30/58) occurred in more than 50% of the victims and represent the most influential changes identified. The second and third most influential changes were a reduction in physical well-being (25/57) and emotional well-being (26/56). Changes were observed within the last two months of life in approximately one third of the cases, and more than four months prior to SUDEP in approximately one third of cases, indicating a potential time frame for proactive preventative strategies. Respondents also noted changes in cognition (16/55), breathing (9/54) or heart rate (8/55). Data indicate these changes may be associated with increased SUDEP risk within subject. Study limitations include the responses were based on memory, there was a potential for data to be over reported, and caretakers were not prompted to observe changes a priori, thus some existing changes may have gone unnoticed. SIGNIFICANCE: Data support the preclinical findings that transient, subclinical (i.e., not severe enough to require medical intervention), modifiable ailments may increase risk of SUDEP. This suggests that just as an epilepsy type can change over a lifetime and epilepsy type-specific treatments can reduce SUDEP risk, further personalization of SUDEP risk will improve our understanding as to whether variables contribute to risk differently across lifespan. Thus, with a dynamic capacity to change, differing factors may contribute to the distribution of risk probability within an individual at any given time. Understanding whether different combinations of transient changes are specific to epilepsy type, age, or sex needs to be determined to move the field forward in hopes of developing a personalized approach to preventative strategies.

Developing a model to promote caretaker confidence and communication in treatment decisions for dairy cattle through case studies.

The significant role of dairy caretakers in maintaining animal welfare on dairy farms emphasizes the necessity of appropriate training and education to ensure the implementation of practices that promote good animal welfare. This study explored the potential of case-based learning as a novel approach to training for dairy caretakers by investigating dairy caretakers' perspectives on case study discussions. Additionally, this study sought to understand thoughts and feelings of caretakers during case study discussions to help identify information that caretakers use to evaluate cases and make decisions. Two case studies were developed and presented to participants, and thematic analysis of case study discussion transcripts was performed. Pre- and post-training questionnaires for 21 caretakers (n = 21) were summarized. The study found that caretaker reactions to case studies were generally positive. Thematic analysis revealed that caretakers use previous knowledge to make treatment decisions for cattle, and valued discussion with coworkers. The results of this study suggest the need for further investigation into the use of case studies and other activities that provide opportunities for critical thinking as training opportunities on dairy farms.

Caregiver's Quality of Life Among Children with Cerebral Palsy in the Kingdom of Saudi Arabia, and Various Influencing Factors: A Single Cohort Study.

Purpose: Quality of life (QOL) among disabled children and their caregivers is an important concern in healthcare. We aim to evaluate the quality of life among caregivers of children with cerebral palsy and to observe the effects of various demographic factors and affected child-related factors on caregivers' quality of life. Patients and Methods: After ethical approval and written consent was obtained from the participants. One hundred six caregivers of children with cerebral palsy from the Asir region were recruited for the study. Caregivers provided details, including their demographic characteristics, social factors, and information regarding their affected children regarding age, gender, mobility levels, etc. They also completed the Arabic version of the World Health Organization Quality of Life-BREF (WHOQOL-BREF) questionnaire for assessing their QOL. Results: All the caregivers were women; their mean age was 40.38 years and SD7.09, and the overall QOL mean and standard deviations were 66.38 ± 12.88. There was a moderately significant correlation between total QOL in comparison with caregivers' educational level and mobility capacity, with R values of 0.54 (p<0.001) and 0.62 (p<0.001), respectively. Conclusion: All the subdomains of WHOQOL-BREF were found to be very closely related to the total scores for QOL. The caregivers of children with cerebral palsy had better QOL scores than the cutoff scores proposed in the WHOQOL-BREF scale. Factors such as increased mobility and education of the affected child contributed to better total QOL scores.

Variation of diagnosis and treatment of catheter-associated urinary tract infections: an online survey among caretakers involved.

Background: The diagnosis of a clinically significant catheter-associated urinary tract infection (CAUTI) in patients performing clean intermittent catheterization (CIC) or with an indwelling catheter (IC) can be challenging. Objective: To get an insight into the variation of the used definition, diagnosis and management of CAUTIs by relevant healthcare workers in the Netherlands. Design: An online clinical scenario-based survey. Methods: The survey was built in Limesurvey and distributed to healthcare workers from randomly selected urology departments, rehabilitation departments/centres and general practice offices between January and May 2022. Questions regarding their field of experience, management strategies, used guidelines and two hypothetical cases with clinical scenarios of a possible CAUTI were included. Results: A total of 172 individuals participated, of which 112 completed the survey. In all, 32 individuals who completed the survey partially were also included. Participants consisted of 68 [44 urologists, 22 rehabilitation doctors (RDs) and 2 general practitioners (GPs)] doctors, 60 nurses (46 from the urology department and 14 from rehabilitation centres/departments) and 16 medical assistants (13 from urology department and 3 from GP offices). The majority consulted patients with an IC or on CIC on a daily/weekly or monthly basis. In all, 35 urologists (79.5%), 9 RDs (40.9%), 21 (45.7%) nurses in the urology department and 6 (42.9%) nurses from a rehabilitation department/centre indicated bladder irrigation as a treatment option for prevention/treatment of CAUTIs, treatment of symptoms or treatment of blockage of the catheter. In the clinical scenarios presented, treatment discrepancies were seen between subspecialties and healthcare workers. Various guidelines were named for the definition of CAUTIs. Conclusion: A considerable variation in diagnoses and management of CAUTIs between the healthcare workers involved was seen. Uniformity in diagnosing and managing CAUTIs, to prevent overtreatment and possible resistance to antibiotics, is advised. Suitable multidisciplinary guidelines are preferred.

Experiences and difficulties for primary caretakers of children with celiac disease - A qualitative study.

BACKGROUND: The purpose of this study was to understand the experiences of primary caretakers (PCTs) with a child diagnosed with celiac disease (CeD). There is paucity of research in understanding the experiences of PCTs of children with CeD in India. METHODS: Purposive sampling was used to select PCTs of CeD-affected children from a tertiary hospital in New Delhi. Ten PCTs took part in the investigation. To gather the data, semi-structured interviews were held with participants. Hindi was used to administer the interviews. RESULTS: The current study focused on the difficulties and worries PCTs experience in managing CeD. The main themes and sub-themes that emerged from the data were diagnosis of CeD (misdiagnosis of CeD, late diagnosis of CeD, feelings at the time of diagnosis, help from a doctor/nutritionist at the time of diagnosis); characteristics of CeD (CeD as a new disease, CeD as an allergy); attitude towards wheat (wheat as a poison, ignorance regarding negative effect of wheat); influence of significant others (making fun of the child, queries from others are a source of worry, non-acceptance of celiac disease by others and pressure to give gluten to the child); issues in following gluten-free diet (GFD) (fear of cross-contamination, distrust on GFD available outside home, GFD is expensive, making GFD is difficult, joint family, non-adherence to GFD, making non-GFD along with GFD); effect of CeD (financial effect of CeD, effect on physical and mental health of the child and PCT, effect on social life, change in family dynamics, eating restrictions); management of CeD (GFD for the whole family to manage CeD, family support to manage CeD, adhering to GFD, early diagnosis); and concerns (future marital concern for the child, cure of CeD, proper physical growth). CONCLUSION: The current study gave an understanding of how PCTs dealt with a child's CeD. The difficulties and worries of caretakers should be taken into consideration and appropriate recommendations made to lessen the strain of managing the child's CeD and the daily obstacles associated with it.

Community perceptions on the effectiveness of herbal medicines and factors associated with their use in managing diarrhoea among under-five children in North-eastern Tanzania.

BACKGROUND: The demand for herbal medicines continues to increase globally. However, community perceptions on their effectiveness and factors influencing their use have not been extensively investigated, notably in the Tanga Region, North-eastern Tanzania, where their use in treating various diseases, including paediatric diarrhoea, has flourished. According to studies, Tanga Region has a high prevalence of diarrhoea among under-five children. This study explored community perceptions on the effectiveness of herbal medicines and factors associated with their use in managing diarrhoea among under-five children in North-eastern Tanzania. METHODS: A qualitative approach and a narrative design were employed by the present study since they had the potential to reveal unrecognized or unreported research problems. Focus group discussions and in-depth interviews were used to facilitate data collection from June 2022 to February 2023. The methods were chosen since they are the most common sources of qualitative data in health research. Purposive sampling method was used to select 247 participants, which included 171 caretakers, 52 traditional healers, and 24 paediatric health workers. Interviews were conducted until the saturation point was reached. The purposive technique was considered since it was a method that enabled the researcher to select participants who were knowledgeable about the study topic. Data analysis was performed using thematic analysis. RESULTS: Economic hardship, culture and heritage, superstitious beliefs, failure to recover after receiving hospital medication, easy accessibility of herbal medicines, and long distance to the health facility were the factors perceived to be potentially associated with persistent use of herbal medicines among caretakers. The majority of participants believed that herbal treatments were harmless and effective in treating diarrhoea. CONCLUSION: Superstitious beliefs, culture, and heritage were the primary justifications for using herbal medicines. It is vital for the relevant authority to educate the community on the risk of using unproven herbal medicines in order to diminish the effects that may arise from using uninvestigated herbs. As things stand, the use of herbal medications will continue owing to their relevance to the lives of people in the study setting.

Prognosis Communication in Pediatric Oncology: A Systematic Review.

BACKGROUND: While communication plays an important role in medicine, it also often represents a challenge when the topic at hand is the prognosis of a high-risk condition. When it comes to pediatric oncology, the challenge becomes even greater for physicians who have to adapt their discourse to both the child and their family. METHODS: Following the PRISMA guidelines, an advanced search on PubMed, Scopus and the Cochrane Library was performed, from 1 January 2017 to 31 October 2022. Demographic data for caregivers, pediatric patients and physicians were extracted, as well as diagnosis, prognosis, presence at discussion, emotional states and impact on life, trust, decision roles, communication quality and other outcomes. RESULTS: A total of 21 articles were analyzed. Most studies (17) focused on caregivers, while only seven and five studies were focused on children and physicians, respectively. Most parents reported high trust in their physicians (73.01%), taking the leading role in decision making (48%), moderate distress levels (46.68%), a strong desire for more information (78.64%), receiving high-quality information (56.71%) and communication (52.73%). Most children were not present at discussions (63.98%); however, their desire to know more was expressed in three studies. Moreover, only two studies observed children being involved in decision making. Most physicians had less than 20 years of experience (55.02%) and reported the use of both words and statistics (47.3%) as a communication method. CONCLUSIONS: Communication research is focused more on caregivers, yet children may understand more than they seem capable of and want to be included in the conversation. More studies should focus on and quantify the opinions of children and their physicians. In order to improve the quality of communication, healthcare workers should receive professional training.

Perceptions Toward Healthcare and Dental Care Services among Parents and Caretakers of People with Intellectual Disability (PWID)-A Questionnaire Study.

Aim and Objective: In Malaysia, there was lack of local evidence on the perception of parents/caretakers of people with intellectual disabilities (PWID) about healthcare. Thus, this study aims to assess the perceptions toward healthcare services of parents or caretakers for PWID. Materials and Methods: Online survey using Google Forms was conducted on parents/caretakers of PWID who attended the special care dentistry clinic and special community centers in Kuantan, Pahang. A questionnaire was developed for data collection. Cronbach alpha was conducted to measure the reliability. Content and face validation was performed to establish the validity. Data entry and analysis were done using IBM statistical package for social sciences (SPSS) version 24. This study only involved univariate (descriptive) data analysis in which categorical data were summarized in actual numbers and percentages. Results: The respondents' perceptions toward healthcare access and services were reasonably good; about 50% disagreed and strongly disagreed on having difficulty accessing healthcare facilities. 65% and 55% of parents/caretakers brought PWID for regular health and dental checkups. The majority agreed and strongly agreed (about 73%) that healthcare staff gave equal services and good support and showed positive attitudes toward PWID under their care. Insufficient healthcare information and below-par communication skills remained the main barriers faced by the parents/caretakers of PWID. About 13% of the respondents reported experiencing discrimination in receiving health and dental services for PWID under their care. The Cronbach alpha scores for sections 2 and 4 were 0.892 and 0.681, respectively. Conclusion: Most of the respondents felt that Malaysia's healthcare services for PWID were fairly good. However, it was intriguing to find that some still experienced discrimination. This shows that education about intellectual disability is salient for healthcare workers and should be embedded in the current curriculum.

"Everyone means well but the one person who's really going to go to bat" - experiences and perspectives of substitute decision makers in caring for their loved ones with serious mental illness.

In the era of on-going efforts to empower persons with mental illness to be independent decision makers as informed by the United Nations' Convention on the Rights of Persons with Disability (CRPD), family members acting as substitute decision makers (SDM) for people suffering from disabling serious mental illness (SMI) remain an integral part of the medical-legal system in psychiatric care in many parts of the world, including Canada; yet their experiences and perspectives are rarely studied. This explorative qualitative study examines the lived experiences and reflections of 14 family member SDMs in Toronto, Canada. Five key themes related to being SDM emerged: 1) Varied subjective understanding of the responsibility and authority of the SDM role; 2) Varied role demands and impact on SDMs' lives; 3) Challenges in dealing with the mental health system; 4) Leveraging decision making status to promote patient care; and 5) SDM role impact on family relationships. The need to improve SDM understanding of their role, acknowledging their value and care-taker burden, finding a balance for their involvement, and improving their support in efforts to enhance care for the patients are discussed.

Psycho-social challenges faced by caretakers of children and adolescents aged 0-19 years with sickle cell disease admitted in a tertiary hospital in Eastern Uganda.

BACKGROUND: Families of children and adolescents living with sickle cell disease face several challenges ranging from psycho-social to social-economic challenges. This study aimed to explore psycho-social challenges experienced by caretakers of children and adolescents aged 0-19 years with SCD and the various coping mechanisms. METHODS: A mixed-methods cross-sectional study was carried out among caregivers of children with SCD who were admitted to the pediatric wards of the Mbale Regional Referral Hospital from September 2019 to November 2019. A total of 333 participants were interviewed using a pretested questionnaire and 11 in-depth interviews were conducted. RESULTS: Most participants 285(85.59%) reported that they experienced psychological challenges and almost all the participants in this study 297(89.19%) experienced social challenges during the care of their patients. Only 36(10.81%) reported not experiencing any social challenges. Almost all the participants reported coping with the situation in various ways of which, 296(88.89%) used acceptance, 9(2.7%) still lived in denial, while 9(2.7%) used talking with others and getting counseled to reduce the intensity of the feelings experienced. Three themes were generated from the in-depth interviews; knowledge of the child's health condition; common symptoms and care, the experience of psycho-social challenges, and coping strategies. CONCLUSION: Sickle cell disease has affected two sets of people; the people living with the disease and those who are caring for their loved ones. Being conscious of this will help health practitioners to be more empathetic to patients and caregivers when treating people living with sickle cell disease. The biggest proportion of caretakers of children and adolescents 0-19 years experienced psycho-social challenges. The main coping strategy used by the caretakers was acceptance.

Predictors of Adherence to Routine Immunization Schedule Among Caretakers of Children Aged 10 to 18 Months in Lira City, Uganda.

Background: Although the majority of nations have routine immunization programs in place as a public health strategy, more than 1.5 million children under the age of 5 die yearly worldwide due to inadequate vaccination coverage. This study investigated the predictors of adherence to routine immunization schedules in Lira city. Methods: This was a cross-sectional study among 420 caretakers of children aged 10 to 18 months. Bivariate and multiple regression analyses were conducted to assess the predictors of adherence to the full immunization schedule. A P-value > .05 was considered statistically significant at 95% CI. Results: The study result indicated that the majority, 237 (56.4%) of caretakers were aged 25 to 34 years, 205 (48.8%) had attained primary level education, and 284 (67.6%) were married. The results showed that 365 (87.0%) had their children fully immunized. The predictors of adherence to full immunization schedule were knowledge on when to start vaccination (AOR:5.65; 95% CI:1.82-17.55; P = .003), maternal outcome expectations (AOR:3.45; 95% CI:1.16-10.29; P = .03) and maternal knowledge (AOR:2.15; 95% CI:1.18-3.90; P = .01). Conclusion: The study findings show that 9 in 10 of the caregivers adhered to the immunization schedule. The significant predictors of adherence to full immunization were flexible clinical hours, maternal outcome expectations and maternal knowledge. Based on the conclusions we recommend that government and service providers be flexible in clinic hours and continue health education to women of childbearing age at an early stage, especially during antenatal care visits, delivery and the postnatal period on childhood vaccination to maintain adherence to the routine immunization schedule.

Psychological distress and coping strategies among the caretakers of children with transfusion-dependent thalassemia.

Introduction: Thalassemia is a chronic childhood disease that could result in psychological distress not only to the patients but also to their caretakers. Caretakers utilize different coping strategies to reduce stress and maintain a good quality of life. Objective: The study aims to measure the level of psychological distress among caretakers of transfusion-dependent thalassemia patients and identify coping strategies used by them, as well as examine factors related to both outcome measures. Methods: Sixty-eight (N = 68) caretakers of children with transfusion-dependent thalassemia agreed to participate in the study when they were approached during their visits to one of three major hospitals in Kelantan, Malaysia, for the children's medical treatment. They completed the Malay validated Depression Anxiety and Stress Scale 21 (DASS 21) and Brief-COPE self-report, in addition to a brief study proforma. Results: The majority of the participants reported feeling psychologically well, with no related scores in depression, anxiety, and stress sub-scales. The mean score for anxiety and stress sub-scales were 3.54 (SD = 3.54) and 4.25 (SD = 3.26) respectively. The median score for the depression sub-scale was 2.00 (IQR 4.00). The three mostly utilized coping strategies were religion, acceptance, and positive reframing. Those with depressed and anxious moods were found to engage more in negative coping strategies including substance abuse, denial, and behavioral disengagement. Being female, of younger age, employed, with higher educational level, and income status was found to significantly influence the adoption of positive reframing as a coping strategy. Conclusion: Psychological distress such as elevated anxiety and depression was found among a small portion of caretakers who have children with thalassemia whose treatment required blood transfusion. They were noted to apply more maladaptive coping strategies compared to their psychologically well counterparts.

Anxiety, depression and associated factors among caretakers of children with atopic dermatitis.

BACKGROUND: The prevalence of anxiety and depression symptoms among caretakers of children with atopic dermatitis (AD) and associated factors is unclear. The study was designed to explore anxiety and depression symptoms among caretakers of AD, and screen factors associated with anxiety and depression symptoms. METHODS: A total of 901 children with AD and their caretakers were continuously enrolled and interviewed at dermatology department of Capital Institute of Pediatrics, Beijing, China. Children's medication was administered by their caretakers. Caretakers' anxiety and depression symptoms were evaluated by Hamilton Depression Rating Scale-17 and Hamilton Depression Rating Scale, while medication compliance was evaluated and divided into poor (< 6 points), moderate (6-7 points), and good (> 7 points) by Morisky Medication Adherence Scale. Multilevel ordered logistic regression was used to screen factors associated with caretakers' anxiety and depression. RESULTS: Among caretakers, 41.5% had anxiety symptoms, 39.6% had depression symptoms, 51.4% have any of the two and 29.7% had both of the two. Factors associated with caretakers' anxiety symptoms included longer duration of the illness (OR, 0.99, 95% CI 0.98-0.99) and taking care of children with severe AD (OR, 2.55, 95% CI 1.43-4.55). Factors associated with caretakers' depression symptoms included higher educational level (OR, 0.56, 95% CI 0.39-0.80), taking care of children with moderate (OR, 2.01, 95% CI 1.15-3.50) and severe AD (OR, 3.99, 95% CI 2.10-7.59) and poor medication compliance (OR, 3.45, 95% CI 1.13-10.56). CONCLUSIONS: Prevalence of anxiety and depression symptoms among caretakers of AD were high. Attention should be paid to caretakers of AD at higher risk for those psychological problems.

A Survey of Awareness of Parents and Caretakers on Diagnostic Radiological Examination Related Radiation Exposure in a Tertiary Hospital in Malaysia.

BACKGROUND: With the advancement in medical imaging, radiological application in the paediatric population has also increased. Children, generally more radiosensitive, have a higher risk of developing certain malignancies. Therefore, this may result in uneasiness among parents and caretakers when their children need to undergo medical imaging examination. Hence, this study aims to assess the awareness of parents' and caretakers' awareness of medical imaging-related radiation exposure in our institution and their opinion of a medical radiation exposure-tracking programme for the paediatric population. METHODOLOGY: A cross-sectional survey was conducted for 6 months duration among parents and caretakers, who brought their children (under 12 years old) for imaging. The questionnaire booklet had eleven knowledge-based questions to assess respondents on ionising radiation-associated medical imaging, the radiation-related risk and radiation safety precaution. RESULTS: Two hundred and fifteen respondents participated in this survey. More than 40% of the respondents failed to identify various dose-saving and ionising radiation-related imaging methods. Only 87 participants (40.5%) could correctly answer at least six out of eleven knowledge-based questions. Moreover, 88.4% of the respondents support a medical radiation exposure-tracking programme for their children. CONCLUSION: Parents and caretakers who visited our institution had inadequate awareness of medical radiation exposure. Appropriate measures need to be taken to address this promptly. Implementation of a medical radiation exposure-tracking programme for the paediatric population is considered timely as most respondents agree with this programme.

Preliminary Exploration of Weekly Peer Group Discussions as a Strategy for Coping with Feelings Associated with Euthanasia in Dairy Caretakers.

Dairy caretakers experience a variety of occupational risks including stress related to performing euthanasia and making euthanasia-related decisions for cattle in their care. Few supportive interventions exist to help caretakers cope with euthanasia-related stress. The aim of this study was to assess the impact of weekly peer discussion sessions as an intervention to reduce euthanasia-related stress and grief in dairy caretakers. This study utilized scores from a modified pet-based bereavement questionnaire to assess the change in bereavement of caretakers in response to euthanasia-related stress in a non-treatment group (who did not attend peer discussion sessions, n = 7) and a treatment group (who attended peer discussion sessions, n = 15). Key findings of this study were that discussion sessions did not have a direct impact on the study outcomes as measured using a pet bereavement scale, as there was no difference in the change in bereavement scores during the 8 week study period between the treatment and non-treatment groups. Thematic analysis of peer discussions revealed that compassion towards dairy cattle is a prominent factor in areas of decision making, protocols, and training. Further studies should continue to explore how performing euthanasia and making euthanasia-related decisions impacts caretakers and what supportive interventions can reduce stress and grief.

Family members' experiences of the return to work of cancer survivors.

Although family members play an important role in various aspects of coping with cancer and are significantly affected by it, little is known about their perspectives regarding return to work (RTW). This study explored attitudes and experiences of cancer survivors' family members related to cancer survivors' RTW. The present study consists of a qualitative research design, employing in-depth semistructured interviews with first-degree family members (N = 21) of cancer survivors who were approached through online social networks: spouses, children, parents and siblings. Grounded theory techniques were used for data analysis. Four themes emerged from the interviews: (a) the family's cautious voice in return-to-work decision making; (b) work-home imbalance; (c) inhibiting or promoting the effect of work on the recovery process and (d) expectations and appreciation of unconditional workplace support. The findings suggest that psychosocial and health care professionals should help family members play an active role in the decision of RTW. Professionals should also prepare family members for potential costs of RTW for the family and help them develop realistic expectations regarding workplace support of the cancer survivor.

Development and Validation of a Mobile Game for Culturally Sensitive Child Sexual Abuse Prevention Education in Tanzania: Mixed Methods Study.

BACKGROUND: Globally, 3 out of 20 children experience sexual abuse before the age of 18 years. Educating children about sexual abuse and prevention is an evidence-based strategy that is recommended for ending child sexual abuse. Digital games are increasingly being used to influence healthy behaviors in children and could be an efficient and friendly approach to educating children about sexual abuse prevention. However, little is known on the best way to develop a culturally sensitive game that targets children in Africa-where sexual education is still taboo-that would be engaging, effective, and acceptable to parents and caretakers. OBJECTIVE: This study aimed to develop a socioculturally appropriate, mobile-based game for educating young children (<5 years) and parents and caretakers in Tanzania on sexual abuse prevention. METHODS:  HappyToto children's game was co-designed with 111 parents and caretakers (females: n=58, 52.3%; male: n=53, 47.7%) of children below 18 years of age and 24 child experts in Tanzania through surveys and focus group discussions conducted from March 2020 to April 2020. From these, we derived an overview of topics, sociocultural practices, social environment, and game interface designs that should be considered when designing child sexual abuse prevention (CSAP) education interventions. We also conducted paper prototyping and storyboarding sessions for the game's interface, storylines, and options. To validate the application's prototype, 32 parents (females: n=18, 56%; males: n=14, 44%) of children aged 3-5 years and 5 children (females: n=2, 40%; males: n=3, 60%) of the same age group played the game for half an hour on average. The parents undertook a pre-post intervention assessment on confidence and ability to engage in CSAP education conversations, as well as exit surveys on the usability and sociocultural acceptability of the game, while children were quizzed on the topics covered and their enjoyment of the game. RESULTS: Parents and caregivers showed interest in the developed game during the conducted surveys, and each parent on average navigated through all the parts of the game. The confidence level of parents in talking about CSAP increased from an average of 3.56 (neutral) before using the game to 4.9 (confident) after using the game. The ability scores, calculated based on a range of topics included in CSAP education talks with children, also increased from 5.67 (out of 10) to 8.8 (out of 10) after the game was played. Both confidence level and ability scores were statistically significant (P<.001). All 5 children were interested in the game and enjoyed the game-provided activities. CONCLUSIONS: The HappyToto game can thus be an effective technology-based intervention for improving the knowledge and skills of parents and children in CSAP education.

Resilience, Emotional Intelligence, and Occupational Performance in Family Members Who Are the Caretakers of Patients with Dementia in Spain: A Cross-Sectional, Analytical, and Descriptive Study.

BACKGROUND: The concern in the scientific community for the study of people with dementia and their families is comprehensible, especially the importance of knowing the effects that caring for the patient has on their family dynamic, paying special attention to the main caregiver. The objective of this study was to analyze the relationship of resilience and emotional intelligence with functional performance in the main caregivers of people with dementia in Spain according to the phase of the disease. METHODS: A cross-sectional, descriptive, and analytical study was carried out. A total of 144 primary family caregivers of patients with dementia in Spain were included in the study. The following variables were measured: sociodemographic, psychosocial, and occupational, as well as resilience and emotional intelligence. RESULTS: The caregivers obtained a low moderate resilience (mean = 64.01 ± 14.5), an emotional intelligence bordering between moderate and high (mean = 78.48 ± 14.82), and a 61.8% self-care categorized as somewhat and quite a bit. The presence of higher levels of resilience in family caregivers of people with dementia were positively related to the time spent on self-care (r = 0.227; p = 0.033) and leisure (r = 0.262; p = 0.014), especially in the moderate phase of the disease, while in the severe phase, this relationship appeared with productivity (r = 0.355; p = 0.034). The higher levels of emotional intelligence were positively related to a greater time dedicated to self-care (r = 0.233, p = 0.005), as well as the data observed in the moderate and severe phase (r = 0.214; p = 0.046 and r = 0.398; p = 0.016 respectively). CONCLUSIONS: The primary caregivers of relatives with dementia who have higher levels of resilience and emotional intelligence spend more time on self-care and leisure activities, especially in the moderate phase of the disease.

mHealth: Where Is the Potential for Aiding Informal Caregivers?

The health and well-being of informal caregivers often take a backseat to those that they care for. While systems, technologies, and services that provide care and support for those with chronic illnesses are established and continuously improved, those that support informal caregivers are less explored. An international survey about motivations to use mHealth technologies was posted to online platforms related to chronic illnesses. We focused on responses regarding the facilitators and challenges of achieving health goals, including the use of mHealth technologies, for the subgroup who identified as "Caregivers". Findings indicate that mHealth technology is not yet the most important motivational factor for achieving health goals in this group, but greater future potential is suggested.