Search results for: Caregivers

Authors: Aikaterini Tavoulari

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This research aims to address the types of repetitive behaviours (RBs) observed by adults in children with vision impairment (VI) or autism spectrum disorder (ASD), the explanations the adults employ to interpret these behaviours, and the impact RBs have on the child, the caregiver, the professional and society. The underlying reason for this is an attempt to discover any potential differences between two different disabilities in a comparative fashion. The study is based on the interpretivism paradigm and follows a qualitative approach. A comparative case study design based on the ecological systems theory (EST) is adopted. Thirty-five caregivers and accredited professionals were recruited (17 for the VI group, out of whom 8 were caregivers and 9 were professionals, and 18 for the ASD group, out of whom 9 were caregivers and 9 were professionals). Following the completion of a pilot study, all participants were interviewed regarding one specific child – their own child/student – via semi-structured interviews. During the interviews, the researcher used a research diary as a methodological tool and video elicitation as a facilitation tool. A cross-case analysis was conducted, and data were analysed according to the method of thematic analysis. A link has been indicated between VI and ASD, which concerns perceptions about the socially constructed manner in which an RB is perceived. ASD is perceived by the participants as a disability with challenging characteristics, such as an RB. The ASD group perceived RB as linked to ableism, social stigmatisation, and taboo, in contrast to VI, where the existence of RB seems to be a consequence of sensory loss. Bi-directionality of EST seems to have been lost completely, and the macrosystem seems to drive the interactions between the ecological systems.

Keywords: ableism, social stigma, disability, repetitive behaviour, vision impairment, autism spectrum disorder, perceptions

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Authors: Shyamani Hettiarachchi, Gopi Kitnasamy

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Background: The potentially high level of physical need and dependency experienced by children with cerebral palsy could affect the quality of life (QOL) of the child, the caregiver and his/her family. Poor QOL in children with cerebral palsy is associated with the parent-child relationship, limited opportunities for social participation, limited access to healthcare services, psychological well-being and the child's physical functioning. Given that children experiencing disabilities have little access to remedial support with an inequitable service across districts in Sri Lanka, and given the impact of culture and societal stigma, there may be differing viewpoints across respondents. Objectives: The aim of this study was to evaluate the psychometric properties of the Tamil version of the Cerebral Palsy Quality of Life for Children (CPQOL-Child) Questionnaire. Design: An instrument development and validation study. Methods: Forward and backward translations of the CPQOL-Child were undertaken by a team comprised of a physiotherapist, speech and language therapist and two linguists for the primary caregiver form and the child self-report form. As part of a pilot phase, the Tamil version of the CPQOL was completed by 45 primary caregivers with children with cerebral palsy and 15 children with cerebral palsy (GMFCS level 3-4). In addition, the primary caregivers commented on the process of filling in the questionnaire. The psychometric properties of test-retest reliability, internal consistency and construct validity were undertaken. Results: The test-retest reliability and internal consistency were high. A significant association (p < 0.001) was found between limited motor skills and poor QOL. The Cronbach's alpha for the whole questionnaire was at 0.95.Similarities and divergences were found between the two groups of respondents. The child respondents identified limited motor skills as associated with physical well-being and autonomy. Akin to this, the primary caregivers associated the severity of motor function with limitations of physical well-being and autonomy. The trend observed was that QOL was not related to the level of impairment but connected to environmental factors by the child respondents. In addition to this, the main concern among primary caregivers about the child's future and on the child's lack of independence was not fully captured by the QOL questionnaire employed. Conclusions: Although the initial results of the CPQOL questionnaire show high test-retest reliability and internal consistency of the instrument, it does not fully reflect the socio-cultural realities and primary concerns of the caregivers. The current findings highlight the need to take child and caregiver perceptions of QOL into account in clinical practice and research. It strongly indicates the need for culture-specific measures of QOL.

Keywords: cerebral palsy, CPQOL, culture, quality of life

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Authors: Ines Cherif, Ghassen Kharroubi, Leila Bouabid, Adel Gharbi, Aicha Boukthir, Margaret Mccarron, Nissaf Ben Alaya, Afif Ben Salah, Jihene Bettaieb

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Healthcare workers' flu vaccination prevents influenza disease among both patients and caregivers. We aimed in this study to assess influenza vaccine (IV) coverage in 2018-2019 among Tunisian physicians and to determine factors associated with IV receipt. A cross sectional study was carried out in Tunisian primary and secondary health care facilities in the 2018-2019 influenza season. Physicians with direct patient contact were recruited according to a self-weighted multistage sampling. Data were collected through a face to face questionnaire containing questions on knowledge, attitudes, and practices regarding IV. Bivariate analysis was used in order to determine factors associated with IV receipt. A total of 167 physicians were included in the study with a mean age of 48.2 ± 7.7 years and a sex-ratio (M: F) of 0.37. Among participants, 15.1% (95% CI: [9.7%-20.3%]) were vaccinated against influenza in the 2018-2019 influenza season. Bivariate analysis revealed that previous flu immunization in the four years preceding the 2018-2019 influenza season (OR=32.3; p < 10-3), belief that vaccinating healthcare workers may reduce work absenteeism (OR=4.7, p=0.028), belief that flu vaccine should be mandatory to healthcare workers (OR=3.3, p=0.01) and high confidence towards IV efficacy in preventing influenza among caregivers (OR= 4.5, p=0.01) were associated with a higher IV receipt in 2018-2019 among physicians. Less than one fifth of Tunisian physicians were vaccinated against influenza in 2018-2019. Higher vaccine uptake was related to a higher belief in vaccine efficacy in preventing influenza disease among both patients and caregivers. This underscores the need for periodic educational campaigns to raise physicians' awareness about IV efficacy. The switch to an IV mandatory policy should also be considered.

Keywords: influenza vaccine, physicians, Tunisia, vaccination uptake

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Authors: Suteera Pradubwong, Pattama Surit, Sumalee Pongpagatip, Tharinee Pethchara, Bowornsilp Chowchuen

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Background: Cleft lip and palate (CLP) is a congenital anomaly of the lip and palate that is caused by several factors. It was found in approximately one per 500 to 550 live births depending on nationality and socioeconomic status. The Tawanchai Center and out-patients surgical room of Srinagarind Hospital are responsible for providing care to patients with CLP (starting from birth to adolescent) and their caregivers. From the observations and interviews with nurses working in these units, they reported that both patients and their caregivers confronted many problems which affected their physical and mental health. Based on the Soukup’s model (2000), the researchers used evidence triggers from clinical practice (practice triggers) and related literature (knowledge triggers) to investigate the problems. Objective: The purpose of this study was to investigate the problems of care for patients with CLP in the Tawanchai Center and out-patient surgical room of Srinagarind Hospital. Material and Method: The descriptive method was used in this study. For practice triggers, the researchers obtained the data from medical records of ten patients with CLP and from interviewing two patients with CLP, eight caregivers, two nurses, and two assistant workers. Instruments for the interview consisted of a demographic data form and a semi-structured questionnaire. For knowledge triggers, the researchers used a literature search. The data from both practice and knowledge triggers were collected between February and May 2016. The quantitative data were analyzed through frequency and percentage distributions, and the qualitative data were analyzed through a content analysis. Results: The problems of care gained from practice and knowledge triggers were consistent and were identified as holistic issues, including 1) insufficient feeding, 2) risks of respiratory tract infections and physical disorders, 3) psychological problems, such as anxiety, stress, and distress, 4) socioeconomic problems, such as stigmatization, isolation, and loss of income, 5)spiritual problems, such as low self-esteem and low quality of life, 6) school absence and learning limitation, 7) lack of knowledge about CLP and its treatments, 8) misunderstanding towards roles among the multidisciplinary team, 9) no available services, and 10) shortage of healthcare professionals, especially speech-language pathologists (SLPs). Conclusion: From evidence-triggers, the problems of care affect the patients and their caregivers holistically. Integrated long-term care by the multidisciplinary team is needed for children with CLP starting from birth to adolescent. Nurses should provide effective care to these patients and their caregivers by using a holistic approach and working collaboratively with other healthcare providers in the multidisciplinary team.

Keywords: evidence-triggers, cleft lip, cleft palate, problems of care

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Authors: G. C. Phiri, E. A. Heil, A. A. Kalimbira, E. Muehlhoff, C. Masangano, B. M. Mtimuni, J. Herrmann, M. B. Krawinkel, I. Jordan

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Background and objectives: High prevalence of undernutrition in Malawi is caused by poor complementary foods. Lack of knowledge of age appropriate food within the household might affect utilization of available resources. FAO-Malawi implemented nutrition education (NE) sessions in 200 villages in Kasungu and Mzimba districts from December 2012 to April 2013 targeting 15 caregivers per village of children aged 6-18 months, grandmothers, spouses and community leaders. Two trained volunteers per village facilitated 10 NE sessions on breastfeeding, food safety and hygiene and complementary feeding using locally available resources. This study assessed the reported dietary diversification practices of infant and young child after nutrition education and the factors that influenced adoption of the practice. Methodology: Questionnaire-based interviews with caregivers were conducted in 16 randomly selected villages (n=108) before training-(t1) and seven months after training-(t2). Knowledge score (KS) was calculated on the indicators breastfeeding, hygiene and complementary feeding. Count regression was performed using SPSS 22. Eight focus group discussions (FGDs) were separately conducted among caregivers and grandmothers in 4 villages. Content analysis was used to analyze FGDs data. Results: Following NE, caregivers' KS significantly increased (p<0.001) between t1 and t2 for breastfeeding (7.7 vs. 9.8, max=18), hygiene (3.8 vs. 5.9, max=7) and complementary feeding (10.2 vs. 16.2, max=26). Caregivers indicated that they stopped preparation of plain-refined maize meal porridge after they gained knowledge on dietary diversification of complementary foods. They learnt mushing and pounding of ingredients for enriched porridge. Whole-maize meal or potatoes were often enriched with vegetables, legumes, small fish or eggs and cooking oil. Children liked the taste of enriched porridge. Amount of enriched porridge consumed at each sitting increase among previously fussy-eater children. Meal frequency increased by including fruits as snacks in child’s diet. Grandmothers observed preparation of enriched porridge among the mothers using locally available foods. Grandmothers liked the taste of enriched porridge and not the greenish color of the porridge. Both grandmothers and mothers reported that children were playing independently after consuming enriched porridge and were strong and healthy. These motivated adoption of the practice. Conclusion: Increased knowledge and skill of preparation and utilisation of locally available foods promoted children’s dietary diversification. Children liking the enriched porridge motivated adoption of dietary diversification.

Keywords: behaviour change, complementary feeding, dietary diversification, IYCN

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Authors: Jirapan Khruesarn, Wimwipa Boonklin

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Background: Currently, Thailand has an aging population. In 2017, the elderly population was over 11.14 million. There will be an increase in the number of elderly people, 8.39 million, some people grumble to themselves and have conflicts with their offspring or those close to them. It is a source of stress. Mental health promotion should be given to the elderly in order to cope with these changes. Due to the family characteristics of Thai society, these family members will act as caregivers for the elderly. Therefore, a group-counseling program based on Personnel-Centered Theory for Elderly Caregivers in Mental Health Promotion for Older People in Na Kaeo Municipality, Kau Ka District, Lampang Province, has been developed to compare the elderly care behavior before and after the participation. Methods: This research was study for 20 elderly' caregiver: Those aimed to compare the before and after use of group program for caregiver to promoting for the elderly by the following methods: Step 1 Establish a framework for evaluating elderly care behaviors and develop a group counseling program for promote mental health for elderly on: 1) Body 2) Willpower 3) Social and community management and 4) Organizing learning process. Step 2 Assessing an Elderly Care Behaviors by using "The behavior assessment on caring for the elderly" and assessing the mental health power level of the elderly and follow the counseling program 9 times and compare of the elderly care behaviors before and after joined a group program, and compare of mental health level of caregiver attends a group program. Results: This study is developing a group counseling program to promoting for the resilience quotient in elderly people that the results of the study could be summarized as follows: 1) Before the elderly's caregivers join a group counseling program: Mental health promotion behaviors of the elderly were at the high level of (3.32), and after: were at the high level of (3.44). 2) Before the elderly's caregiver attends a group counseling program: the mental health level of the elderly the mean score was (47.85 percent), and the standard deviation was (0.21 percent) and after. The elderly had a higher score of (51.45 percent) In summary, after the elderly caregivers joined the group, the elderly are higher in all aspects promote mental health for elderly and the statistically significance at the 0.05, It shows that programs are fit for personal and community condition in promoting the mental health of the elderly because this theory has the idea that: Humans have the ability to use their intelligence to solve problems or make decisions effectively, And member of group counseling program have ventured and express grievances that the counselor is a facilitator who focuses on personal development by building relationships among people. In other words, the factors contributing to higher levels of elderly care behaviors is group counseling, that isn't a hypothetical process but focus on building relationships that are based on mutual trust and Unconditional acceptance.

Keywords: group counseling base on person-centered theory, elderly person, resilience quotient: RQ, caregiver

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Authors: Jeoffrey Oostrom, Robbert James Schlingmann, Hani Alers

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This document depicts the research into the indicators of dementia progression, the automation of quality of life assignments, and the visualization of it. To do this, the Smart Teddy project was initiated to make a smart companion that both monitors the senior citizen as well as processing the captured data into an insightful dashboard. With around 50 million diagnoses worldwide, dementia proves again and again to be a bothersome strain on the lives of many individuals, their relatives, and society as a whole. In 2015 it was estimated that dementia care cost 818 billion U.S Dollars globally. The Smart Teddy project aims to take away a portion of the burden from caregivers by automating the collection of certain data, like movement, geolocation, and sound-levels. This paper proves that the Smart Teddy has the potential to become a useful tool for caregivers but won’t pose as a solution. The Smart Teddy still faces some problems in terms of emotional privacy, but its non-intrusive nature, as well as diversity in usability, can make up for it.

Keywords: dementia care, medical data visualization, quality of life, smart companion

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Authors: Marcio Emilio Dos Santos, Kelly C. F. Dos Santos

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Caregivers of patients diagnosed with ASD are subjected to high stress situations due to the complexity and multiple levels of daily activities that require the organization of events, behaviors and socioemotional situations, such as immediate decision making and in public spaces. The cognitive and emotional requirement needed to fulfill this caregiving role exceeds the regular cultural process that adults receive in their process of preparation for conjugal and parental life. Therefore, in many cases, caregivers present a high level of overload, poor capacity to organize and mediate the development process of the child or patient about their care. Aims: Improvement in the cognitive and emotional capacities related to the caregiver function, allowing the reduction of the overload, the feeling of incompetence and the characteristic level of stress, developing a more organized conduct and decision making more oriented towards the objectives and procedural gains necessary for the integral development of the patient with diagnosis of ASD. Method: The study was performed with 20 relatives, randomly selected from a total of 140 patients attended. The family members were submitted to the Wechsler Adult Intelligence Scale III intelligence test and the Family assessment Management Measure (FaMM) questionnaire as a previous evaluation. Therapeutic activity in a small group of family members or caregivers, with weekly frequency, with a minimum workload of two hours, using the Feuerstein Instrumental Enrichment Cognitive Development Program - Feuerstein Instrumental Enrichment for ten months. Reapplication of the previous tests to verify the gains obtained. Results and Discussion: There is a change in the level of caregiver overload, improvement in the results of the Family assessment Management Measure and highlight to the increase of performance in the cognitive aspects related to problem solving, planned behavior and management of behavioral crises. These results lead to the discussion of the need to invest in the integrated care of patients and their caregivers, mainly by enabling cognitively to deal with the complexity of Autism. This goes beyond the simple therapeutic orientation about adjustments in family and school routines. The study showed that when the caregiver improves his/her capacity of management, the results of the treatment are potentiated and there is a reduction of the level of the caregiver's overload. Importantly, the study was performed for only ten months and the number of family members attended in the study (n = 20) needs to be expanded to have statistical strength.

Keywords: caregiver overload, cognitive development program ASD caregivers, feuerstein instrumental enrichment, family assessment management measure

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Authors: Jilu David

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Background: Schizophrenia is one of the most misunderstood mental illnesses across the globe. Lack of understanding about mental illnesses often delay treatment, severely affects the functionality of the person, and causes distress to the family. The study, Video-based Psychoeducation for Caregivers of Persons with Schizophrenia, consisted of developing a psychoeducational video about Schizophrenia, its symptoms, causes, treatment, and the importance of family support. Methodology: A quasi-experimental pre-post design was used to understand the feasibility of the study. Qualitative analysis strengthened the feasibility outcomes. Knowledge About Schizophrenia Interview was used to assess the level of knowledge of 10 participants, before and after the screening of the video. Results: Themes of usefulness, length, content, educational component, format of the intervention, and language emerged in the qualitative analysis. There was a statistically significant difference in the knowledge level of participants before and after the video screening. Conclusion: The statistical and qualitative analysis revealed that the video-based psychoeducation program was feasible and that it facilitated a general improvement in knowledge of the participants.

Keywords: Schizophrenia, mental illness, psychoeducation, video-based psychoeducation, family support

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Authors: Michal Christina Steven, Mohd. Yusof Hj Ibrahim, Haryati Abdul Karim, Prabakaran Dhanaraj, Kelly Alexius Mansin

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After 27 years, Malaysia reported polio cases in 2019 involving the children of the undocumented migrants living in Sabah. These undocumented migrants present a significant challenge in achieving the elimination of vaccine-preventable diseases (VPD). Due to the recent polio outbreak among the undocumented migrant children in Sabah, an in-depth interview was conducted among the caregivers of undocumented migrant children to identify the barriers and drivers towards vaccinating their children. Financial barriers, legal citizenship status, language barrier, the COVID-19 pandemic, and physical barriers have been the barriers to access vaccination services by undocumented migrants. Five significant drivers for undocumented migrants to vaccinate their children are social influence, fear of disease, parental trust in healthcare providers, good support, and vaccine availability. Necessary action should be taken immediately to address the problems of vaccinating the children of undocumented migrants to prevent the re-emergence of VPD.

Keywords: Malaysia, polio, Sabah, undocumented migrants

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Authors: Elzbieta Sikorska-Simmons

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Advanced dementia is a progressive terminal brain disease that is accompanied by a syndrome of difficult to manage symptoms and complications that eventually lead to death. The management of advanced dementia poses major challenges to family caregivers who act as patient health care proxies in making medical treatment decisions. Little is known, however, about how they manage advanced dementia and how their treatment choices influence the quality of patient life. This prospective qualitative study examines the key medical treatment decisions that family caregivers make while managing advanced dementia. The term ‘family caregiver’ refers to a relative or a friend who is primarily responsible for managing patient’s medical care needs and legally authorized to give informed consent for medical treatments. Medical decision-making implies a process of choosing between treatment options in response to patient’s medical care needs (e.g., worsening comorbid conditions, pain, infections, acute medical events). Family caregivers engage in this process when they actively seek treatments or follow recommendations by healthcare professionals. Better understanding of medical decision-making from the family caregiver perspective is needed to design interventions that maximize the quality of patient life and limit inappropriate treatments. Data were collected in three waves of semi-structured interviews with 20 family caregivers for patients with advanced dementia. A purposive sample of 20 family caregivers was recruited from a senior care center in Central Florida. The qualitative personal interviews were conducted by the author in 4-5 months intervals. The ethical approval for the study was obtained prior to the data collection. Advanced dementia was operationalized as stage five or higher on the Global Deterioration Scale (GDS) (i.e., starting with the GDS score of five, patients are no longer able survive without assistance due to major cognitive and functional impairments). Information about patients’ GDS scores was obtained from the Center’s Medical Director, who had an in-depth knowledge of each patient’s health and medical treatment history. All interviews were audiotaped and transcribed verbatim. The qualitative data analysis was conducted to answer the following research questions: 1) what treatment decisions do family caregivers make while managing the symptoms of advanced dementia and 2) how do these treatment decisions influence the quality of patient life? To validate the results, the author asked each participating family caregiver if the summarized findings accurately captured his/her experiences. The identified medical decisions ranged from seeking specialist medical care to end-of-life care. The most common decisions were related to arranging medical appointments, medication management, seeking treatments for pain and other symptoms, nursing home placement, and accessing community-based healthcare services. The most challenging and consequential decisions were related to the management of acute complications, hospitalizations, and discontinuation of treatments. Decisions that had the greatest impact on the quality of patient life and survival were triggered by traumatic falls, worsening psychiatric symptoms, and aspiration pneumonia. The study findings have important implications for geriatric nurses in the context of patient/caregiver-centered dementia care. Innovative nursing approaches are needed to support family caregivers to effectively manage medical care needs of patients with advanced dementia.

Keywords: advanced dementia, family caregiver, medical decision-making, symptom management

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Authors: Renee Fabian, Jordan Davidson

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Current research on non-suicidal self-injury (NSSI) provides ample insights on best practices for caregivers and clinicians to address and reduce NSSI behavior among adolescents. However, the efficacy of evidenced-based NSSI interventions and their delivery from the perspective of adolescent patients does not receive significant attention, creating a gap between the efficacy of research-based NSSI interventions and adolescent perceptions of NSSI treatment and adolescent willingness to engage in NSSI interventions. To address the gap between practice and patient perspectives and inform more effective treatment outcomes, the current survey aims to identify major patient-reported adverse reactions to NSSI disclosures from caregivers, treating mental health clinicians, and medical professionals using a mixed methods survey of 2,500 people with a history of NSSI completed by editors at a consumer-facing health publication. Based on the analyzed results of the survey, a majority of adolescents with a history of NSSI found parents and caregivers ineffective at empathetically addressing NSSI, and a significant number of participants reported at least one treating mental health professional inadequately responded to NSSI behaviors, in addition to other findings of adverse reactions to NSSI disclosures that serve as a barrier to treatment. NSSI is a significant risk factor for future suicide attempts. Addressing patient-reported adverse reactions to NSSI disclosures in the adolescent population can remove barriers to the effectiveness of caregiver and clinician NSSI interventions and reduce the risk of NSSI-related harm and lower the risk of future suicide attempts or completions.

Keywords: adolescent self-injury, non-suicidal self-injury, patient perspectives, self-harm interventions

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Authors: Isabelle Gobatto

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Based on an anthropological approach, this paper explores the medical profession and the construction of medical practices by considering the multiform articulations between structural poverty and the production of care from a low-resource francophone West African country, Burkina Faso. This country is considered in its exemplary dimension of culturally differentiated countries of the African continent that share the same situation of structural poverty. The objective is to expose the effects of structural poverty on the ways of constructing professional knowledge and thinking about the sense of the medical profession. If doctors are trained to have the same capacities in South and West countries, which are to treat and save lives whatever the cultural contexts of the practice of medicine, the ways of investing their role and of dealing with this context of action fracture the homogenization of the medical profession. In the line of anthropology of biomedicine, this paper outlines the complex effects of structural poverty on health care, care relations, and the moral economy of doctors. The materials analyzed are based on an ethnography including two temporalities located thirty years apart (1990-1994 and 2020-2021), based on long-term observations of care practices conducted in healthcare institutions, interviews coupled with the life histories of physicians. The findings reveal that disabilities faced by doctors to deliver care are interpreted as policy gaps, but they are also considered by physicians as constitutive of the social and cultural characteristics of patients, making their capacities and incapacities in terms of accompanying caregivers in the production of care. These perceptions have effects on know-how, structured around the need to act even when diagnoses are not made so as not to see patients desert health structures if the costs of care are too high for them. But these interpretations of highly individualizing dimensions of these difficulties place part of the blame on patients for the difficulties in using learned knowledge and delivering effective care. These situations challenge the ethics of caregivers but also of ethnologists. Firstly because the interpretations of disabilities prevent caregivers from considering vulnerabilities of care as constituting a common condition shared with their patients in these health systems, affecting them in an identical way although in different places in the production of care. Correlatively, these results underline that these professional conceptions prevent the emergence of a figure of victim, which could be shared between patients and caregivers who, together, undergo working and care conditions at the limit of the acceptable. This dimension directly involves politics. Secondly, structural poverty and its effects on care challenge the ethics of the anthropologist who observes caregivers producing, without intent to arm, experiences of care marked by an ordinary violence, by not giving them the care they need. It is worth asking how anthropologists could get doctors to think in this light in west-African societies.

Keywords: Africa, care, ethics, poverty

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Authors: Szu-Mei Hsiao

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Many nurses have concerns about the difficulties of providing spiritual care for ethnic-Chinese patients and family members within their cultural context. This is due to a lack of knowledge and training. Most family caregivers are female. There has been little research exploring the potential impact of Chinese cultural values on the spiritual distress of couple dyadic participants in Taiwan. This study explores the spiritual issues of Taiwanese women coping with their husband’s advanced cancer during palliative care to death. Qualitative multiple case studies were used. Data was collected through participant observation and in-depth face-to-face interviews. Transcribed interview data was analyzed by using qualitative content analysis. Three couples were recruited from a community-based rural hospital in Taiwan where the husbands were hospitalized in a medical ward. Four spiritual distress themes emerged from the analysis: (1) A personal conflict in trying to come to terms with love and forgiveness; the inability to forgive their husband’s mistakes; and, lack of their family’s love and support. (2) A feeling of hopelessness due to advanced cancer, such as a feeling of disappointment in their destiny and karma, including expressing doubt on survival. (3) A feeling of uncertainty in facing death peacefully, such as fear of facing the unknown world; and, (4) A feeling of doubt causing them to question the meaning and values in their lives. This research has shown that caregivers needed family support, friends, social welfare, and the help of their religion to meet their spiritual needs in coping within the final stages of life and death. The findings of this study could assist health professionals to detect the spiritual distress of ethnic-Chinese patients and caregivers in the context of their cultural or religious background as early as possible.

Keywords: advanced cancer, Buddhism, Confucianism, Taoism, qualitative research, spiritual distress

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Authors: K. Shiba, T. Kaburagi, Y. Kurihara

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With global aging, people who require care, such as people with dementia (PwD), are increasing within many developed countries. And PwDs may wander and unconsciously set foot outdoors, it may lead serious accidents, such as, traffic accidents. Here, round-the-clock monitoring by caregivers is necessary, which can be a burden for the caregivers. Therefore, an automatic wandering detection system is required when an elderly person wanders outdoors, in which case the detection system transmits a ‘moving’ followed by an ‘absence’ state. In this paper, we focus on the transition from the ‘resting’ to the ‘absence’ state, via the ‘moving’ state as one of the wandering transitions. To capture the transition of the three states, our method based on the hidden Markov model (HMM) is built. Using our method, the restraint where the ‘resting’ state and ‘absence’ state cannot be transmitted to each other is applied. To validate our method, we conducted the experiment with 10 subjects. Our results show that the method can classify three states with 0.92 accuracy.

Keywords: wander, microwave Doppler sensor, respiratory frequency band, the state transition, hidden Markov model (HMM).

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Authors: Donatien Callon, Ian Lalonde, Mathieu Nadeau, Alexandre Girard

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Patient transfer is a challenging, critical task because it exposes caregivers to injury risks. Available transfer devices, like floor lifts, lead to improvements but are far from perfect. They do not eliminate the caregivers’ risk of musculoskeletal disorders, and they can be burdensome to use due to their poor maneuverability. This paper presents a new motorized floor lift with a single central motorized wheel connected to an instrumented handle. Admittance controllers are designed to 1) improve the device maneuverability, 2) reduce the required caregiver effort, and 3) ensure the security and comfort of patients. Two controller designs, one with a linear admittance law and a non-linear admittance law with variable damping, were developed and implemented on a prototype. Tests were performed on seven participants to evaluate the performance of the assistance system and the controllers. The experimental results show that 1) the motorized assistance with the variable damping controller improves maneuverability by 28%, 2) reduces the amount of effort required to push the lift by 66%, and 3) provides the same level of patient comfort compared to a standard unassisted floor lift.

Keywords: floor lift, human robot interaction, admittance controller, variable admittance

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Authors: Kenji Gwee

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The Mental Capacity Act is a new legislation that allows for lasting powers of attorney and court-appointed deputies, in respect of people who lack legal capacity. While the UK Act, after which the Singapore Act is modeled, has been shown to be therapeutic to donors, the Singapore Act differs from its UK counterpart and it is unclear if the Singapore Act can be beneficial to donors as purported. The purpose of this study was to determine what the perceptions of three groups of stakeholders (patients, caregivers and psychiatrists) are about the aspects of the Mental Capacity Act that are therapeutic to donors. In addition, ways to increase the therapeutic value of the Act to donors are sought. A qualitative methodology was used and the research was guided by two theoretical frameworks: therapeutic jurisprudence and an interpretive constructive framework. Interviews with 12 psychiatrists, and focus groups with twenty three patients and seven caregivers showed agreement that, allowing donors to nominate more than one decision- maker, and whistle-blowing mechanisms for recourse for abuse, were therapeutic to donors. To further increase the therapeutic value of the Act, 2 suggestions were made: the Act should provide for (i) advanced healthcare directives- allowing donors to make advance decisions to refuse treatment, or cease existing treatment, and (ii) independent advocacy services- to have a case worker to represent people who have no family or friends and are thus unable to find suitable donees.

Keywords: Mental Capacity Act, therapeutic jurisprudence, qualitative methodology, the UK Act

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Authors: Shradha Parsekar, Suma Nair, Ajay Bailey, Binu V. S.

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Background: Concealing of cancer-related information is seen in many low-and-middle-income countries and may be associated with multiple factors. Comparatively, there is lack of information about, how breast cancers diagnosed women disclose cancer-related information to their social contacts and vice versa. To get more insights on the participant’s experience, opinions, expectations, and attitudes, a qualitative study is a suitable approach. Therefore, this study involving in-depth interviews was planned to lessen this gap. Methods: Interviews were conducted separately among breast cancer patients and their caregivers with semi-structured qualitative interview guide. Purposive and convenient sampling was being used to recruit patients and caregivers, respectively. Ethical clearance and permission from the tertiary hospital were obtained and participants were selected from the Udupi district, Karnataka, India. After obtaining a list of breast cancer diagnosed cases, participants were contacted in person and their willingness to take part in the study was taken. About 39 caregivers and 35 patients belonging to different breast cancer stages were recruited. Interviews were recorded with prior permission. Data was managed by Atlas.ti 8 software. The recordings were transcribed, translated and coded in two cycles. Most of the patients belonged to stage II and III cancer. Codes were grouped together into to whom breast cancer status was concealed to and underneath reason for the same. Main findings: followings are the codes and code families which emerged from the data. 1) Concealing the breast cancer status from social contacts other than close family members (such as extended family, neighbor and friends). Participants perceived the reasons as, a) to avoid questions which people probe (which doesn’t have answers), b) to avoid people paying courtesy visit (to inquire about the health as it is Indian culture to visit the sick person) making it inconvenient for patient and caregivers have to offer something and talk to them, c) to avoid people getting shocked (react as if cancer is different from other diseases) or getting emotional/sad, or getting fear of death d) to avoid getting negative suggestion or talking anything in front of patient as it may affect patient negatively, e) to avoid getting stigmatized, f) to avoid getting obstacle in child’s marriage. 2) Participant concealed the breast cancer status of young children as they perceived that it may a) affect studies, b) affect emotionally, c) children may get scared. 3) Concealing the breast cancer status from patients as the caregivers perceived that they have fear of a) worsening patient’s health, b) patient getting tensed, c) patient getting shocked, and d) patient getting scared. However, some participants stressed important in disclosing the cancer status to social contact/patient to make the people aware of the disease. Conclusion: The news of breast cancer spreads like electricity in the wire, therefore, patient or family avoid it for many reasons. Although, globally, due to physicians’ ethical obligations, there is an inclination towards more disclosure of cancer diagnosis and status of prognosis to the patient. However, it is an ongoing argument whether patient/social contacts should know the status especially in a country like India.

Keywords: breast cancer, concealing cancer status, India, qualitative study

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Authors: Lamia Bouzgarrou, Irtyah Merchaoui, Amira Omrane, Salma Kammoun, Amine Daafa, Neila Chaari

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Backgrounds: Currently, low back pain (LBP) is one of the most prevalent public health problems, which caused severe morbidity among a large portion of the adult population. It is also associated with heavy direct and indirect costs, in particular, related to absenteeism and early retirement. Health care workers are one of most occupational groups concerned by LBP, especially because of biomechanical and psycho-organizational risk factors. Our current study aims to investigate risk factors associated with chronic low back pain among Tunisian caregivers in university-hospitals. Methods: Cross-sectional study conducted over a period of 14 months, with a representative sample of caregivers, matched according to age, sex and work department, in two university-hospitals in Tunisia. Data collection included items related to socio-professional characteristics, the evaluation of the working capacity index (WAI), the occupational stress (Karazek job strain questionnaire); the quality of life (SF12), the musculoskeletal disorders Nordic questionnaire, and the examination of the spine flexibility (distance finger-ground, sit-stand maneuver and equilibrium test). Results: Totally, 293 caregivers were included with a mean age equal to 42.64 ± 11.65 years. A body mass index (BMI) exceeding 30, was noted in 20.82% of cases. Moreover, no regular physical activity was practiced in 51.9% of cases. In contrast, domestic activity equal or exceeding 20 hours per week, was reported by 38.22%. Job strain was noted in 19.79 % of cases and the work capacity was 'low' to 'average' among 27.64% of subjects. During the 12 months previous to the investigation, 65% of caregivers complained of LBP, with pain rated as 'severe' or 'extremely severe' in 54.4% of cases and with a frequency of discomfort exceeding one episode per week in 58.52% of cases. During physical examination, the mean distance finger-ground was 7.10 ± 7.5cm. Caregivers assigned to 'high workload' services had the highest prevalence of LBP (77.4%) compared to other categories of hospital services, with no statistically significant relationship (P = 0.125). LBP prevalence was statistically correlated with female gender (p = 0.01) and impaired work capacity (p < 10⁻³). Moreover, the increase of the distance finger-ground was statistically associated with LBP (p = 0.05), advanced age (p < 10⁻³), professional seniority (p < 10⁻³) and the BMI ≥ 25 (p = 0.001). Furthermore, others physical tests of spine flexibility were underperformed among LBP suffering workers with a statistically significant difference (sit-stand maneuver (p = 0.03); equilibrium test (p = 0.01)). According to the multivariate analysis, only the domestic activity exceeding 20H/week, the degraded quality of physical life, and the presence of neck pain were significantly corelated to LBP. The final model explains 36.7% of the variability of this complaint. Conclusion: Our results highlighted the elevate prevalence of LBP among caregivers in Tunisian public hospital and identified both professional and individual predisposing factors. The preliminary analysis supports the necessity of a multidimensional approach to prevent this critical occupational and public health problem. The preventive strategy should be based both on the improvement of working conditions, and also on lifestyle modifications, and reinforcement of healthy behaviors in these active populations.

Keywords: health care workers, low back pain, prevention, risk factor

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Authors: Aziza Al-Sawafi

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Introduction: The evidence of family interventions in schizophrenia is robust primarily in high-income settings. However, they have been adapted to other settings and cultures to improve effectiveness and acceptability. In Oman, there is limited integration of psychosocial interventions in the treatment of schizophrenia. Therefore, the adaptation of family intervention to the Omani culture may facilitate its uptake. Most service users in Oman live with their families outside the healthcare system, and nothing is known about their experience, needs, or resources. Furthermore, understanding caregivers' and mental health professionals' preferences, perceptions, and experience is a fundamental element in the process of intervention development. Therefore, this study aims to develop a culturally sensitive, feasible, and acceptable family intervention for relatives living with schizophrenia in Oman. Method: The Medical Research Council's framework for the evaluation of complex health care interventions provided the conceptual structure for the study. The development phase was carried out, which involved three stages: 1) systematically reviewing the available literature regarding culturally adapted family interventions in the Arab world 2) In-depth interviews with caregivers to explore their experience and perceived needs and preferences regarding intervention 3) A focus group study involving health professionals to explore the acceptability and feasibility of delivering the family intervention in the Omani context. Data synthesis determined the design of the proposed intervention according to the findings obtained from the previous stages. Results: Stage one: The systematic review found limited evidence of culturally-adapted family interventions in the Arab region. However, the cultural adaptation process was comprehensive, and the implementation was reported to be feasible and acceptable. Stage two: The experience of family caregivers illuminated four main themes: burden, stigma, violence, and family needs. Burdens of care included objective and subjective burdens, positive feelings, and coping mechanisms. Caregivers gave their opinion about the content and preference of the intervention from their personal experiences. Stage three: mental health professionals discussed the delivery system of the intervention from a clinical standpoint concerning issues and barriers to implementation. They recommended modifications to the components of the intervention to ensure its acceptability and feasibility in the local setting. Data synthesis was carried out, and the intervention was designed. Conclusion: This study provides evidence of the potential applicability and acceptability of a culturally sensitive family intervention for families of individuals with schizophrenia in Oman. However, more work needs to be done to test the feasibility of the study and overcome the practical challenges.

Keywords: cultural-adaptation, family intervention, Oman, schizophrenia

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Authors: Peri Ozlem Yuksel-Sokmen, Irfan Cagtay

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Oral languages are destined to disappear rapidly in the absence of interventions aimed at encouraging their usage by young children. The seminal language preservation model proposed by Fishman (1991) stresses the importance of multiple generations using the endangered L1 while engaged in daily routines with younger children. Over the last two decades Fishman (2001) has used his intergenerational transmission model in documenting the revitalization of Basque languages, providing evidence that families are transmitting Euskara as a first language to their children with success. In our study, to motivate usage of Lazuri, we asked caregivers to speak the language while engaged with their toddlers (12 to 48 months) in semi-structured play, and included both parents (N=32) and grandparents (N=30) as play partners. This unnatural prompting to speak only in Lazuri was greeted with reluctance, as 90% of our families indicated that they had stopped using Lazuri with their children. Nevertheless, caregivers followed instructions and produced 67% of their utterances in Lazuri, with another 14% of utterances using a combination of Lazuri and Turkish (Codeswitch). Although children spoke mostly in Turkish (83% of utterances), frequencies of caregiver utterances in Lazuri or Codeswitch predicted the extent to which their children used the minority language in return. This trend suggests that home interventions aimed at encouraging dyads to communicate in a non-preferred, endangered language can effectively increase children’s usage of the language. Alternatively, this result suggests than any use of the minority language on the part of the children will promote its further usage by caregivers. For researchers examining links between play, culture, and child development, structured play has emerged as a critical methodology (e.g., Frost, Wortham, Reifel, 2007, Lilliard et al., 2012; Sutton-Smith, 1986; Gaskins & Miller, 2009), allowing investigation of cultural and individual variation in parenting styles, as well as the role of culture in constraining the affordances of toys. Toy props, as well as picture-books in native languages, can be used as tools in the transmission and preservation of endangered languages by allowing children to explore adult roles through enactment of social routines and conversational patterns modeled by caregivers. Through adult-guided play children not only acquire scripts for culturally significant activities, but also develop skills in expressing themselves in culturally relevant ways that may continue to develop over their lives through community engagement. Further pedagogical tools, such as language games and e-learning, will be discussed in this proposed oral talk.

Keywords: language intervention, pedagogical tools, endangered languages, Lazuri

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Authors: Afsheen Masood, Sumaira Rashid, Shama Mazahir

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The main aim of this research is to evaluate the efficacy of a culturally adapted management program The Stepping Stones Positive Parenting Program (Tripple P; SSTP) for caregivers of children with autism spectrum disorders and Down syndrome. Positive psychology has catered new dimensions to the traditional perspectives of parenting. The current study was designed to determine the adoptions of positive parenting elements such as parenting styles, parental satisfaction, parental competency, and management of parental stress in alignment with behavioral problems of children with special needs after their parents get trained on Positive Parenting Techniques. This research study was devised in liaison with rehabilitation institute that is extending services for children with Autism Spectrum Disorder and Down syndrome. A Quasi experimental research design was employed with pre-test, post-test control group study in order to evaluate the changes in parenting patterns of parents with children (with Autism and Down syndrome). Caregivers of children diagnosed with Autism and Down syndrome between the age ranges of 25 to 45 years, n=20 from autism group and 20 from Down syndrome group (while their children with special needs in the age ranges of 8 to 14 years) participated in the current research. Parenting scale encompassing areas of parental efficacy, parental satisfaction was used in addition to Parenting Stress Index (SF), indigenously developed Child Behavior Problems Checklist and demographic sheet. Findings revealed statistically significant improvement for caregivers in intervention group from pretest to posttest situation. There was considerable decrease in reported mean behavioral issues of children with Down syndrome when parents in experimental group started practicing Positive Parenting Techniques with their special needs children. This change was somehow not recorded in parents of children with autism. Thus these findings establish the efficacy of culturally adapted parenting program that is evidence based and is established in western empirical research. This carries significant implication for practitioners in special needs domain and for school psychologists in Pakistan.

Keywords: Autism and Parenting, Downsyndrome and Parenting , Positive Parenting, Stepping Stone Positive Parenting Program, Mangement of Behavioral Problems with positive parenting

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Authors: Budsarin Padwang, Darunee Jongudomkarn, Thawan Nieamsup, Autchareeya Patumwan, Rutja Phuphaibul

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In Northern Thailand, a pilot study by the qualitative data, on caring for family members with chronic illness/bedridden based on in-depth interviews of the 12 elderly caregivers in family was carried out during November to December 2017. There are four families that living with three generations in the family. This report is part of a larger study of 'The intergenerational contract of the family in long-term care for older members' to understand the situation and context related to the research questions. Content analysis was obtained and the results revealed as followings. 1) No choice and no freedom: most caregivers were asked by their family members to do the care giving roles because of various appropriate reasons and they could not refuse and felt like having no freedom. 2) ‘Katanyu’ to the parents: The Thai ideology of making merit by taking care of parents was beliefs to do the best in their caregiver roles. 3) The family commitments: The issues of family caring and relationships were the key value of keeping family members to take care of older members with chronic illness/bedridden. The preliminary findings can be beneficial for other regions and will lead to in-depth explore to answer the research questions of the larger study in the future.

Keywords: intergenerational contract, long term care, older members, generational family

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Authors: Shahad Alkhalifah, Jonh Wright

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Autism spectrum disorder (ASD) is a pervasive developmental disorder associated, for 42% to 88% of people with ASD, with sensory processing disorders. Sensory processing disorders (SPD) impact daily functioning, and it is, therefore, essential to be able to diagnose them accurately. Currently, however, there is no assessment tool available for the Saudi Arabia (SA) population that would cover a wider enough age range. Therefore, this study aimed to assess the psychometric properties of the Sensory Processing Measure Preschool-Home Form (SPM-P) when used in English, with a population of English-speaking Saudi participants. This was chosen due to time limitations and the urgency in providing practitioners with appropriate tools. Using a convenience sampling approach group of caregivers of typically developing (TD) children and a group of caregivers for children with ASD were recruited (N = 40 and N = 16, respectively), and completed the SPM-P Home Form. Participants were also invited to complete it again after two weeks for test-retest reliability, and respectively, nine and five agreed. Reliability analyses suggested some issues with a few items when used in the Saudi culture, and, along with interscale correlations, it highlighted concerns with the factor structure. However, it was also found that the SPM-P Home has good criterion-based validity, and it is, therefore, suggested that it can be used until a tool is developed through translation and cultural adaptation. It is also suggested that the current factor structure of SPM-P Home is reassessed using a large sample.

Keywords: autism, sensory, assessment, reliability, sensory processing dysfunction, preschool, validity

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Authors: Yu-Shi Ye, Jia-Min Wu, Jhih-Ci Li

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Background: Most orthopedic inpatients and primary caregivers are elderly, and patients are at high risk of falls. We set up a quality control team to analyze the root cause and found the following issues: 1. The nursing staff did not conduct cognitive assessments of patients and their primary caregivers to ensure that health education content was understood. 2. Nurses prefer to use spoken language in health education but lack the skills to use diverse teaching materials. 3. Newly recruited nurses have insufficient awareness of fall prevention. Methods: The study subjects were 16 nurses in the orthopedic ward of a teaching hospital in central Taiwan. We implemented the following strategies: 1. Developed a fall simulation teaching plan and conducted teaching courses and assessments in the morning meeting; 2. Designed and used a "fall prevention awareness card" to improve the prevention awareness of elderly patients; 3. All staff (including new staff) received experiential education training. Results: In 2021, 40% of patients in the orthopedic wards were aged 60-79 years (792/1979) with a high risk of falls. According to data collection, the incidence of falls in hospitalized patients was 0.04% (5/12651), which exceeded the threshold of 0.02% in our ward. After completing the on-the-job education training in October, the nursing staff expressed that they were more aware of the special situation of fall prevention. Through practical sharing and drills, combined with experiential teaching strategies, nurses can reconstruct the safety awareness of fall prevention and deepen their cognitive memory. Participants scored between 30 and 80 on the pretest (16 students, mean: 72.6) and between 90 and 100 on the post-test (16 students, mean: 92.6), resulting in a 73.8% improvement in overall scores. We have a total of 4 new employees who have all completed the first 3 months of compulsory PGY courses. From January to April 2022, the incidence of falls in hospitalized patients was 0.025% (1/3969). We have made good improvements and will continue to track the outcome. Discussion: In addition to enhancing the awareness of falls among nursing staff, how-to guide patients and primary caregivers to prevent falls is also the focus of improvement. The proper way of health education can be better understood through practical exercises and case sharing.

Keywords: experiential teaching strategies, fall prevention, cognitive card, elderly patients, orthopedic wards

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Authors: N. Uaphongsathorn, C. Worawong, S. Thaewpia

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Background and significance: The population is aging in Thai society, the elderly dependent is at great risk of various functional, psychological, and socio-economic problems as well as less access to health care. They may require long term care at home to maximize their functional abilities and activities of daily living and to improve their quality of life during their own age. Therefore, there is a need to develop a home-based long term care to meet the long term care needs of elders dependent. Methods: The research purpose was to develop long term care model among the elderly dependent in Chaiyaphum province in Northeast region of Thailand. Action Research which is composing of planning, action, observation, and reflection phases was used. Research was carried out for 12 months in all sub-districts of 6 districts in Chaiyaphum province. Participants (N = 1,010) participating in the processes of model development were comprised of 3 groups: a) a total of 110 health care professionals, b) a total of 600 health volunteers and family caregivers and c) a total of 300 the elderly dependent with chronically medical illnesses or disabilities. Descriptive statistics and content analysis were used to analyze data. Findings: Results have shown that the most common health problems among elders dependent with physical disabilities to function independently were cardiovascular disease, dementia, and traffic injuries. The development of home-based long term care model among elders dependent in Chaiyaphum province was composed of six key steps. They are: a) initiating policies supporting formal and informal caregivers for the elder dependent in all sub-districts, b) building network and multidisciplinary team, c) developing 3-day care manager training program and 3-day care provider training program d) training case managers and care providers for the elderly dependent through team and action learning, e) assessing, planning and providing care based on care individual’s needs of the elderly dependent, and f) sharing experiences for good practice and innovation for long term care at homes in district urban and rural areas. Among all care managers and care providers, the satisfaction level for training programs was high with a mean score of 3.98 out of 5. The elders dependent and family caregivers addressed that long term care at home could contribute to improving life’s daily activities, family relationship, health status, and quality of life. Family caregivers and volunteers have feeling a sense of personal satisfaction and experiencing providing meaningful care and support for elders dependent. Conclusion: In conclusion, a home-based long term care is important to Thai elders dependent. Care managers and care providers play a large role and responsibility to provide appropriate care to meet the elders’ needs in both urban and rural areas in Thai society. Further research could be rigorously studied with a larger group of populations in similar socio-economic and cultural contexts.

Keywords: elderly people, care manager, care provider, long term care

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Authors: Angelika Magiera, Weronika Penar, Czesław Klocek

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Intellectual disability (ID) affects approximately 1.55% of children and adults in the society of developed countries. Depending on the ID degree, the patient is burdened with additional disease entities. Intellectual disability does not only limits a person’s opportunities to participate in social life but also affects whole families. People with ID belong to the group of risk of mental illnesses, they are less emotionally stable, while families are predisposed to depression. The study was held in a day care center for people with intellectual disabilities (of various degrees of disability) on 26 people. Nurses and carers also took part. The age range of study groups ranged from 22 to 67 years. Therapeutic classes were held for four independent mixed groups (sex and intellectual disability degree) from 6 to 7 people each, lasting no more than 30 minutes. They were created by the facility's staff to make sure that a group is stable. The animal assisted activity took place with a 2.5-year-old Ragdoll cat. The animal has passed the exam (certificate entitling her to take part in felinotherapy) and had 1.5 years of work experience. Due to the different degrees of ID, an individual emotional state survey was conducted among the caregivers of those who were involved in the activity, to assess the impact of animal assisted activity with a cat on patients. A positive effect on the emotional state of people with different types of intellectual disability was observed. Caregivers and nurses of those participating in the study express willingness to continue these types of classes and consider them necessary for this group of people.

Keywords: intellectual disabilities, animal-assisted activity, cat, feline, emotions

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Authors: Grace Fangmin Tan, Elaine Yiling Tay, Elizabeth Huiwen Tham, Andrea Wei Ching Yeo

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Background: While accidental poisonings in children may seem unavoidable, knowledge of circumstances surrounding such incidents and identification of risk factors is important in the development of secondary prevention strategies. Some risk factors include age of the child, lack of adequate supervision and improper storage of substances. The aim of this study is to assess risk factors and circumstances influencing outcomes in these children. Methodology: A retrospective medical record review of all accidental poisoning cases presenting to the Children’s Emergency at National University Hospital (NUH), Singapore between January 2014 and December 2015 was conducted. Information on demographics, poisoning circumstances and clinical outcomes were collected. Results: Ninety-nine of a total of 186 poisoning cases were accidental ingestions, with a mean age of 4.7 (range 0.4 to 18.3 years). The gender distribution is rather equal with 52(52.5%) females and 47(47.5%) males. Seventy-nine (79.8%) were self-administered by the child and in 20 cases (20.2%), the substance was administered erroneously by caregivers 12/20 (60.0%) of whom were given the wrong drug dose while 8/20 (40.0%) were given the wrong substance. Self-administration was associated with presentation to the ED within 12 hours (p=0.027, OR 6.65, 95% CI 1.24-35.72). Notably, 94.9% of the cases involved substances kept within reach of the child. Sixty-nine (82.1%) had the substance kept in the original container, 3(3.6%) in food containers, 8(9.5%) in other containers and 4(4.8%) without a container. Of the 50 cases with information on labelling, 40/50(80.0%) were accurately labelled, 2/50 (4.0%) wrongly labelled, and 8/50 (16.0%) were unlabelled. Implicated substances included personal care products (11.1%), household cleaning products (3.0%), and different classes of drugs such as paracetamol (22.2%), antihistamines (17.2%) and sympathomimetics (8.1%). Children < 3 years of age were 4.8 times more likely to be poisoned by household substances than children >3 years of age (p=0.009, 95% CI 1.48-15.77). Prehospital interventions were more likely to have been done in poisoning with household substances (p=0.005, OR 6.12 95% CI 1.73-21.68). Fifty-nine (59.6%) were asymptomatic, 34 (34.3%) had a Poisoning Severity Score (PSS) grade of 1 (minor) and 6 (6.1%) grade 2 (moderate). Older children were 9.3 times more likely to be symptomatic (p<0.001, 95% CI 3.15-27.25). Thirty (32%) required admission. Conclusion: A significant proportion of accidental poisoning cases were due to medication administration errors by caregivers, which should be preventable. Risk factors for accidental poisoning included lack of adequate caregiver supervision, improper labelling and young age of the child. There is an urgent need to improve caregiver counselling during medication dispensing as well as to educate caregivers on basic child safety measures in the home to prevent future accidental poisonings.

Keywords: accidental, caregiver, paediatrics, poisoning

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Authors: Shakeela Ahmed, Nabanita Hazarika

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The study aims to understand the effects of dementia on family members. The primary objectives of this research are to identify the main reasons for dementia among the elderly, understand the struggles and stigmas faced by the family members, and understand the effects of dementia on family members. The research employs a qualitative method and utilizes unstructured interviews with family members, counselors and caregivers. A descriptive research design is employed, and thematic analysis is used to analyze the data. A total of 17 family members in the age group of 54-69 years were interviewed, along with 2 counselors and 2 caretakers. In understanding dementia, the researcher has reviewed articles, and the studies revealed diverse meanings, symptoms, stages attached to dementia, and the complex interplay of protective and risk factors for dementia. However, in understanding dementia and its effects on families, there is a lack of studies in relation to the significant effects of dementia on family members and their role as primary caregivers. Therefore, an attempt has been made to understand the effects of dementia on family members, along with ways to improve dementia care for family members. The purpose of the study was to understand the effects and challenges of dementia on family members, the psychosocial reasons for dementia among the elderly, and the various struggles and stigmas faced by the family members of dementia patients. The major findings of the study indicate that people with dementia are cared for by family members at home. Dementia has a significant impact on family members. Family member's quality of life is affected; they experience feelings of anxiety, stress, irritation, frustration, and fear as they watch their loved ones struggle with dementia. They also experience financial strain, as dementia care, medication, and therapy are expensive. Another common impact is the role reversal of family members for their loved ones with dementia. There is a lack of awareness and social understanding about dementia, which leads to family members experiencing stigma and struggles. Caregivers are unable to take care of themselves, and many times, the primary caregiver, a spouse who is elderly, experiences acute stress and a physical inability to meet the demands of being a caregiver. Strategies to improve dementia care are understanding dementia, being patient with the person, showing love and care for the person, avoiding provoking the person, distracting them, offering reassurance, playing their favorite music, talking about things they love, going through old memories, following a structured routine, and remaining calm. The study has made an attempt to provide strategies to manage dementia care, understanding the struggles family members go through, and raising awareness about dementia that will enable further research and investigations.

Keywords: elderly, dementia, stigma, family members

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Authors: Akankunda Veronicah Karuhanga

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Dementia is an age mental disorder that makes victims lose normal functionality that needs delicate attention. It has been technically defined as a clinical syndrome that presents a number of difficulties in speech and other cognitive functions that change someone’s behaviors and can also cause impairments in activities of daily living, not forgetting a range of neurological disorders that bring memory loss and cognitive impairment. Family members are the primary healthcare givers and therefore, the way how they handle the situation in its early stages determines future deterioration syndromes like total memory loss. Unfortunately, most family members are ignorant about this condition and in most cases, the patients are brought to our facilities when their condition was already mismanaged by family members and we thus cannot do much. For example, incontinence can be managed at early stages through potty training or toilet scheduling before resorting to 24/7 diapers which are also not good. Professional Elderly care should be understood and practiced as an extension of homes, not a dumping place for people considered “abnormal” on account of ignorance. Immediate relatives should therefore be sensitized concerning the normalcy of dementia in the context of old age so that they can be understanding and supportive of dementia patients rather than discriminating against them as present-day lepers. There is a need to skill home-based caregivers on how to handle dementia in its early stages. Unless this is done, many of our elderly homes shall be filled with patients who should have been treated and supported from their homes. This skilling of home-based caregivers is a vital intervention because until elderly care is appreciated as a human moral obligation, many transactional rehabilitation centers will crop up and this shall be one of the worst moral decadences of our times.

Keywords: dementia, family, Alzheimers, relevancy

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