Search results for: Caregivers

Authors: Andrei Pomana, Graham Brewer

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Autism is a lifelong developmental disorder that affects verbal and non-verbal communication, behaviour and sensory processing. As a result, people on the autism spectrum have a difficult time when confronted with environments that have high levels of sensory stimulation. This is often compounded by the inability to properly communicate their wants and needs to caregivers. The capacity for people with autism to integrate depends on their ability to at least tolerate highly stimulating public environments for short periods of time. The overall challenges that people on the spectrum and their caregivers face need to be established in order to properly create and assess methods to mitigate the effects of high stimulus public spaces. The paper aims to identify the challenges that people on the autism spectrum and their caregivers face in typical public environments. Nine experienced autism therapists have participated in a semi-structured interview regarding the challenges that people with autism and their caregivers face in public environments. The qualitative data shows that the unpredictability of events and the high sensory stimulation present in public environments, especially auditory, are the two biggest contributors to the difficulties that people on the spectrum face. If the stimuli are not removed in a short period of time, uncontrollable behaviours or 'meltdowns' can occur, which leave the person incapacitated and unable to respond to any outside input. Possible solutions to increase integration in public spaces for people with autism revolve around removing unwanted sensory stimulus, creating personalized barriers for certain stimuli, equipping people with autism with better tools to communicate their needs or to orient themselves to a safe location and providing a predictable pattern of events that would prepare individuals for tasks ahead of time.

Keywords: autism, built environment, meltdown, public environment, sensory processing disorders

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Authors: Hyunsik Park

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Objective: To provide information of charged nursing care facility for helping to establish geriatric health care policy, and to figure out which factors would be the main determinants for the choice of it. Method: 46 males and 53 females, and the same number of their caregivers admitted into the charged nursing care facility were recruited for intensive interview including personal information, disease information, and economic, familial, marital and emotional statuses. This is a cross-sectional study and we analyzed the data qualitatively. Results: Patients had 3.2 diseases and a hospitalization for 2.3 years on average. They were consists of 46 singles (46.9%), 8 unmarried (8.2%), 5 divorced (5.1%) and 32 married (32.7%). More than two third (70.1%) were supported by their eldest son or daughter. Mostly, the family caregivers decided to admit into the facilities by the doctor’s recommendation (68.4%). When they made a choice for a facility, most of them (42.9%) considered environmental and sanitary conditions. According to their expectation for management in nursing care facility, most caregivers (59.2%) wanted simple-staying for the duration, but most patients (61.3%) expected to be home after taking comprehensive rehabilitation. Three-quarter of the caregivers would agree to use nursing care facilities in the future, if they would be the same situation. Conclusion: Life style and environment are rapidly changing. In the near future, we need lots of the charged nursing care facilities for the old, thus this study can be the good reference for the preparing upcoming aged and super-aged society.

Keywords: nursing care facility, aged society, qualitative analysis, health

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Authors: Lenell D. Walton

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African American families have consistently contended that their child’s special education team does not provide the services necessary to meet their child’s academic goals. Special education teams must guide and mentor African American students and their families through the special education process. This qualitative study examined African American female caregivers' perceptions, experiences, and expectations regarding the special education process. Data collection methods utilized in the study included a survey, semi-structured interviews, and three focus groups. Data were analyzed and compared to identify themes. Three themes emerged from the survey: education and training, participation, and challenges. Six major themes emerged: (a) differences in treatment and cultural disconnect, (b) lack of support and resources, (c) participants’ experiences of the special education process, (d) parent participation, (e) barriers and concerns, and (f) expectations. Implications for policy and practice to improve the special education process are discussed.

Keywords: African American, caregivers, critical race theory, special education

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Authors: Chukwuka Justus Iwegbu

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Background: A major concern facing the world is providing senior citizens, individuals with disabilities, and other vulnerable groups with high-quality care. This issue is more serious in Nigeria's North Eastern area, where the burden of disease and disability is heavy, and access to care is constrained. This study aims to fill this gap by exploring the roles, challenges and support needs of caregivers, care home management, funding and administration in challenged communities in North Eastern Nigeria. The study will also provide a comprehensive understanding of the current situation and identify opportunities for improving the quality of care and support for caregivers and care recipients in these communities. Methods: A mixed-methods design, including both quantitative and qualitative data collection methods, will be used, and it will be guided by the stress process model of caregiving. The qualitative stage approach will comprise a survey, In-depth interviews, observations, and focus group discussion and the quantitative analysis will be used in order to comprehend the variations between caregiver's roles and care home management. A review of relevant documents, such as care home policies and funding reports, would be used to gather quantitative data on the administrative and financial aspects of care. The data collected will be analyzed using both descriptive statistics and thematic analysis. A sample size of around 200-300 participants, including caregivers, care recipients, care home managers and administrators, policymakers and health care providers, would be recruited. Findings: The study revealed that caregivers in challenged communities in North Eastern Nigeria face significant challenges, including lack of training and support, limited access to funding and resources, and high levels of burnout. Care home management and administration were also found to be inadequate, with a lack of clear policies and procedures and limited oversight and accountability. Conclusion: There is a need for increased investment in training and support for caregivers, as well as a need for improved care home management and administration in challenged communities in North Eastern Nigeria. It also highlights the importance of involving community members in decision-making and planning processes related to care homes and services. The study would contribute to the existing body of knowledge by providing a detailed understanding of the challenges faced by caregivers, care home managers and administrators.

Keywords: caregivers, care home management, funding, administration, challenge communities, North Eastern Nigeria

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Authors: Emily J. Winnall

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It is understood that China has the largest population of people living with dementia in the world; however, little is known about this culturally diverse community, specifically the Chinese Communities, which has been poorly represented in past British research Literature. Further research is needed to gain a greater understanding of the support needs of caregivers caring for a relative living with dementia from the Chinese background. Dementia care and caregivers in Chinese communities are less investigated. The study is a case study of two Chinese community centers and one housing support service. Semi-structured one-to-one interviews and a pilot questionnaire were used as the methods for the study. A toolkit will also be created as a document that provides guidance and signposting to health and social care services for Chinese communities. The findings identified three main themes. Caregivers do not receive any formal support from the UK health and social services, and they felt they would have benefited from getting advice on what support they could access. Furthermore, the data also identified that Chinese organisations do not have the knowledge of dementia, to be able to support those living with dementia and their families. Also, people living with dementia and their families rarely present to Chinese organisations and UK health and social care services, meaning they are not receiving the support they are entitled to or need. Additionally, the community center would like to see workshops/courses around dementia for people from Chinese backgrounds. The study concludes that people from Chinese cultural backgrounds do not have sufficient access to support from UK health and social care services. More information needs to be published that will benefit Chinese communities.

Keywords: Chinese, Chinese organisations, Dementia, family caregivers, social care

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Authors: Ofelia A. Damag

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The study was focused on the development and assessment of the illustrated language activities of the 1996 Edition of the Portage Guide to Early Education. It determined the extent of appropriateness, applicability, time efficiency and aesthetics of the illustrated language activities to be used as instructional material not only by teachers, but parents and caregivers as well. The eclectic research design was applied in this study using qualitative and quantitative methods. To determine the applicability and time efficiency of the study, a try out was done. Since the eclectic research design was used, it made use of a researcher-made survey questionnaire and focus group discussion. Analysis of the data was done through weighted mean and ANOVA. The respondents of the study were representatives of Special Education (SPED) teachers, caregivers and parents of a special-needs child, particularly with difficulties in learning basic language skills. The results of the study show that a large number of respondents are SPED teachers and caregivers and are mostly college graduates. Many of them have earned units towards Master’s studies. Moreover, a majority of the respondents have not attended seminars or in-service training in early intervention for them to be more competent in the area of specialization. It is concluded that the illustrated language activities under review in this study are appropriate, applicable, time efficient and aesthetic for use as a tool in teaching. The recommendations are focused on the advocacy for SPED teachers, caregivers and parents of special-needs children to be more consistent in the implementation of the new instructional materials as an aid in an intervention program.

Keywords: illustrated language activities, inclusion, portage guide to early education, special educational needs

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Authors: Adriane Amend, Leidiene Ferreira Santos, Daniella Pires Nunes

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The experience of assuming or caring for older persons dependents by relatives is a complex task that encompasses or affective involvement, the demand for technical activities and or psychological support. It would be necessary to understand the situations related to the caregiver, the person and the environment, which help the family difficulty, as a caregiver to lead this role. Objective: To identify the forces that drive and restrict the care process of family caregivers of the older adults. Method: Descriptive and exploratory research, with a qualitative approach, which has as a reference the Force Field Theory. Five family caregivers of older adult’s dependents residing in the city of Palmas, Tocantins, Brazil will participate. The data were collected from December 2021 to February 2022, through a semi-structured individual interview, and submitted to content analysis. Results: As forces that drive or process of caring for family caregivers were: the account of compassionate attitudes and patience of the caregiver (I); to the collaboration of the other person to the care and to the body structure of the same (Other); and the supports of other people not cared for and structural, such as adaptations in the room, read and bathroom, as in the presence of air conditioners (Environment). Among the restrictive forces of care we mention difficulties in delegating care to another person, or stress of care and other personal demands (I); imposition of the older person about care and e a transfer from bed to hip (Other); e lack of accessibility of the house and absence of air conditioning and hospital bed (Environment). Conclusion: The results show that there are driving forces with the caregiver's attitude and feelings, a bond as an idol and support for the caregiver and the environment. On the other hand, conflicting ties, absence of physical structure and daily and continuous care shifts, can significantly compromise well-being or the cycle of older adult, caregiver and care.

Keywords: caregivers, frail elderly, perception, geriatric nursing

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Authors: Ireen Manase Kabembo, Patrick Chanda

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Background: Substance use disorders are among the chronic conditions that affect all age groups. Worldwide, there is an increase in young people affected by SUDs, which implies that more family members are transitioning into the caregiver role. Family caregivers play a buffering role in the formal healthcare system due to their involvement in caring for persons with acute and chronic conditions in the home setting. Family carers of youth with problematic alcohol and marijuana use experience myriad challenges in managing daily care for this medically vulnerable group. In addition, the poor health-seeking behaviours of youth with SUDs characterized by eluding treatment and runaway tendencies coupled with the effects of the pandemic made caregiving a daunting task for most family caregivers. Issues such as limited and unavailable psychotropic medications, social stigma and discrimination, financial hurdles, systemic barriers in adolescent and young adult mental healthcare services, and the lack of a perceived vulnerability to Covid-19 by youth with SUDs are experiences of family caretakers. Methods: A qualitative study with 30 family caregivers of youth aged 16-24 explored their lived experiences and subjective meanings using two in-depth semi-structured interviews, a caregiving timeline, and participant observation. Findings: Results indicate that most family caregivers had challenges managing care for treatment elusive youth, let alone having them adhere to Covid-19 regulations. However, youth who utilized healthcare services and adhered to treatment regimens had positive outcomes and sustained recovery. The effects of the pandemic, such as job losses and the closure of businesses, further exacerbated the financial challenges experienced by family caregivers, making it difficult to purchase needed medications and daily necessities for the youth. The unabated stigma and discrimination of families of substance-dependent youth in Zambian communities further isolated family caregivers, leaving them with limited support. Conclusion: Since young people with SUDs have a compromised mental capacity due to the cognitive impairments that come with continued substance abuse, they often have difficulties making sound judgements, including the need to utilize SUD recovery services. Also, their tendency to not adhere to the Covid-19 pandemic requirements places them at a higher risk for adverse health outcomes in the (post) pandemic era. This calls for urgent implementation of robust youth mental health services that address prevention and recovery for these emerging adults grappling with substance use disorders. Support for their family caregivers, often overlooked, cannot be overemphasized.

Keywords: chronic care management, Covid-19 pandemic, family caregivers, youth with substance use disorders

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Authors: K. M. Saif Ur Rahman, Razib Mamun, Himica Arjuman, Fida Al Shams

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Introduction: Autism spectrum disorder (ASD) has become an emerging neurodevelopmental disorder with increasing prevalence. It has become an important public health issue globally. Many approaches including speech and language therapy (SLT), occupational therapy, behavioral therapy etc. are being applied for the betterment of the ASD patients. This study aims to describe the characteristics of ASD patients and perception of caregiver regarding SLT in Bangladesh. Methods: This cross-sectional study was conducted in a therapy and rehabilitation center at Dhaka city. Caregivers of 48 ASD patients responded regarding their perception of SLT and characteristics of patients. Results: Among 48 ASD patients, 56.3% were between 3 to 5 years age group with a male predominance (87.5%). More than half of the participants (56.3%) initiated SLT at the age of 1-3 years and the majority (43.8%) were taking SLT for less than 1 year. Majority of the patients (64.6%) were taken to a physician for healthcare as a first contact of which 29.2% were referred to SLT by physicians. More than half (56.3%) of the caregivers were moderately satisfied with SLT and most of them (62.5%) mentioned moderate improvement through SLT. Improvement rate was 10-15% in specific symptoms such as eye contact, complex mannerism, pointing, imitation etc. Conclusion: This study reveals the self-reported perception of caregivers on SLT. Despite reported improvements, more exploration of different approaches and intervention for management of ASD is recommended.

Keywords: ASD, characteristics, SLT, Bangladesh

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Authors: Mimi My Tse

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The prevalence of chronic non-cancer pain is high among community-dwelling older adults. Pain affects physical and psychosocial abilities. Older adults tend to be less mobile and have a high tendency to fall risk. In addition, older adults with pain are depressed, anxious, and not too willing to join social activities. This will make them feel very lonely and social isolation. Instead of giving pain management education and programs to older adults/clients, both older adults and their caregivers, it is sad to find that the majority of existing services are given to older adults only. Given the importance of family members in increasing compliance with health-promoting programs, we proposed to offer pain management programs to both older adults with his/her caregiver as a “dyad.” We used the Health Promotion Model and implemented a dyadic pain management program (DPM). The DPM is an 8-week group-based program. The DPM comprises 4 weeks of center-based, face-to-face activities and 4 weeks of digital-based activities delivered via a WhatsApp group. There were 30 dyads (15 in the experimental group with DPM and 15 in the control group with pain education pamphlets). Upon the completion of DPM, pain intensity and pain interference were significantly lower in the intervention group as compared to the control group. At the same time, physical function showed significant improvement and lower depression scores in the intervention group. In conclusion, the study highlights the potential benefits of involving caregivers in the management of chronic pain for older adults. This approach should be widely promoted in managing chronic pain situations for community-dwelling older adults and their caregivers.

Keywords: pain, older adults, dyadic approach, education

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Authors: Matthew Heidman, Susan Dallabrida, Analice Costa

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For infant caregivers, choosing an infant formula for their child can be a difficult task in an already stressful environment of caring for a newborn. There exist several channels that influence purchasing decision of infant formula such as, friends and family and their experiences, health care professionals, social media influencers, as well as standard media marketing. This study sought to identify the key channels by which caregivers obtain information regarding infant formula and help them make their purchasing decision. A digital survey was issued for 90 days in the US (n=121) and 30 days in Mexico (n=88) targeting respondents with children ≤4 years of age. Respondents were asked two key questions regarding the influences on their purchasing decisions: 1) “When choosing a formula brand, what do you do to help you make your decision?”, and 2) “When choosing a formula brand, what is most important to you?”. A list of potential answers was provided for each question and respondents were asked to select all that apply to them. Lastly, respondents were provided a 5-point Likert scale and asked to respond to the statement 3) “I am more likely to buy a particular formula brand if my pediatrician recommends it to me”. For question 1, in the US and Mexico, 76% and 95% of respondents respectively, selected “I ask my pediatrician” which represented the top selection. For question 2, 52% and 45% of respondents respectively, selected “On package “Pediatrician Recommended” claim…” which also represented the top selection. For statement 3, 82% and 89% of respondents respectively, stated that they either “somewhat agree” or “strongly agree” with the statement. For infant caregivers, the pediatrician is a very important channel of influence when it comes to purchasing decision of infant formula. Caregivers clearly see the pediatrician as the arbiter of their child’s nutrition and seek their recommendations for infant formula use. For infant formula manufacturers, it is important that they see the pediatrician as the gatekeeper to this market, and they put resources into medical marketing communication to this health care professional group to ensure success.

Keywords: infant formula, pediatrician, purchasing driver, caregiver

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Authors: M. Petunia Tsweleng

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Statement of the Problem: Research and aid organisations report that children and adolescents orphaned due to HIV and AIDS are particularly vulnerable as they are often exposed to negative effects of both HIV and AIDS and orphanhood. Without much-needed parental love, care, and support, these children and adolescents are at risk of poor developmental outcomes. A cursory look at the available literature on AIDS-orphaned adolescents, and the quality of caregiving relationships with caregivers, shows that this is a relatively under-researched terrain. This article is a review of the literature on caregiving relationships of adolescents orphaned due to AIDS and their current primary caregivers. It aims to inform community programmes and policymakers by providing insight into the qualities of these relationships. Methodology: A comprehensive search of both peer-reviewed and non-peer-reviewed literature was conducted through EBSCOhost, SpringLINK, PsycINFO, SAGE, PubMed, Elsevier ScienceDirect, JSTOR, Wiley Online Library databases, and Google Scholar. The combination of keywords used for the search were: (caregiving relationships); (orphans OR AIDS orphaned children OR AIDS orphaned adolescents); (primary caregivers); and (quality caregiving); (orphans); (HIV and AIDS). The search took place between 24 January and 28 February 2022. Both qualitative and quantitative research studies published between 2010 and 2020 were reviewed. However, only qualitative studies were selected in the end -as they presented more profound findings concerning orphan-caregiver relationships. The following three stages of meta-synthesis analysis were used to analyse data: refutational syntheses, reciprocal syntheses, and line of argument. Results: The search resulted in a total of 2090 titles, of which 750 were duplicates and therefore subtracted. The researcher reviewed all the titles and abstracts of the remaining 1340 articles. 329 articles were identified as relevant, and full texts were reviewed. Following the review of the full texts, 313 studies were excluded for relevance and 4 for methodology. Twelve articles representing 11 studies fulfilled the inclusion criteria and were selected. These studies, representing different countries across the globe, reported similar forms of hardships experienced by caregivers economically, psychosocially, and healthwise. However, the studies also show that the majority of caregivers found contentment in caring for orphans, particularly grandmother carers, and were thus enabled to provide love, care, and support despite hardships. This resulted in positive caregiving relationships -as orphans fared well emotionally and psychosocially. Some relationships, however, were found negative due to unhealed emotional wounds suffered by both caregivers and orphans and others due to the caregiver’s lack of interest in providing care. These findings were based on self-report data from both orphans and caregivers. Conclusion: Findings suggest that intervention efforts need to be intensified to: alleviate poverty in households that are affected by HIV and AIDS pandemic, strengthen the community psychosocial support programmes for orphans and their caregivers; and integrate clinical services with community programmes for the healing of emotional and psychological wounds. Contributions: Findings inform community programmes and policymakers by providing insight into the qualities of the mentioned relationships as well as identifying factors commonly associated with high-quality caregiving and poor-quality caregiving.

Keywords: systematic review, caregiving relationships, orphans and primary caregivers, AIDS

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Authors: Ming Fang Hsieh

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The purpose of this study was to investigate the reading responses of infants and toddlers across different contexts in nursery centers. The study adopted Sipe’s framework for children’s literacy education to explore the reading behavior of infants and toddlers. The study was conducted at two nurseries. The sample comprised 46 infants and toddlers and 6 caregivers. The methods of data collection included observation of various reading activities, including shared reading in a group, one-on-one reading, and unstructured reading activities, as well as interviews with caregivers. The data obtained through observations and interviews were transcribed and analyzed. The caregivers and the children’s parents signed an informed consent form before the start of the study. There was no risk anticipated during the course of the study. The analysis revealed five types of reading responses exhibited by the infants and toddlers: (1) linguistic- verbally responding to reading, repeating vocabulary, and answering questions; (2) affective- concentrating on reading or requesting for repeated reading, leaning on books, and gazing at caregivers; (3) explosive- children under 18 months were observed manipulating books through their bodies or different movements like flipping, rotating, or tapping on books; (4) social- during unstructured reading context, children were seen interacting with peers or following the rules of reading, sitting properly, and choosing one book at a time; and (5) distracted responses- paying attention to something else instead of reading, walking around, and playing, which was usually observed during shared reading in a group. The study concluded that children’s distraction and explosive reading behaviors may be a part of the process of their emergent reading behavior. As children develop, they demonstrate an increase in verbal responses, improved concentration, and better behavior. The study suggests that adults should continue to provide appropriate reading opportunities beginning from infancy to nurture children’s reading behaviors.

Keywords: reading response, infants and toddlers, early reading, picture books

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Authors: Hanna Gulema, Meaza Demissie, Alemayehu Worku, Tesfaye Assebe Yadeta, Yemane Berhane

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Background: In patriarchal societies, female caregivers decide on food allocation within a family based on prevailing gender and age norms, which may lead to inequality that does not favor young adolescent girls. This study evaluated the effect of a community-based social norm intervention involving female caregivers in West Hararghe, Ethiopia. The intervention was engaging female caregivers along with other adult influential community members to deliberate and act on food allocation social norms in a process referred to as Social Analysis and Action (SAA). Method: We used data from a large quasi-experimental study to compare family eating practices between those who participated in the Social Analyses and Action intervention and those who did not. The respondents were female caregivers in households with young adolescent girls (ages 13 and 14 years). The study’s outcome was the practice of family eating together from the same dish. The difference in difference (DID) analysis with the Mixed effect logistic regression model was used to examine the effect of the intervention. Result: The results showed improved family eating practices in both groups, but the improvement was greater in the intervention group. The DID analysis showed an 11.99 percentage points greater improvement in the intervention arm than in the control arm. The mixed-effect regression produced an adjusted odds ratio of 2.08 (95% CI [1.06–4.09]) after controlling selected covariates, p-value 0.033. Conclusions: The involvement of influential adult community members significantly improves the family practice of eating together in households where adolescent girls are present in our study. The intervention has great potential to minimize household food allocation inequalities and thus improve the nutritional status of young adolescents. Further studies are necessary to evaluate the effectiveness of the intervention in different social norm contexts to formulate policy and guidelines for scale-up.

Keywords: family eating practice, social norm intervention, adolescence girls, caregiver

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Authors: Comsun Thongchai, Vorapoj Promasatayaprot

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Background: Child development center is a day care center that gathers large numbers of children in the same areas. As a result, it provides high opportunity for infection, especially gastrointestinal and respiratory infections. Ubon Ratchathani has been a province with an increasing number of cases of Hand foot and mouth disease each year reported between 2014 and 2016. Accorded to a recent investigation reported, HFMD occurred in the Child Development Center and kindergartens, this was a place where HFMD spreads. This research was aimed to investigate the knowledge, attitude and behavior about hand foot and mouth disease preventing of child caregivers in child development centers, Ubon Ratchathani Province. Method: Descriptive study was conducted between April and July, 2017. The study instruments used questionnaires and in-depth interviews on their practices of prevention and environment management of HFMD. The samples of survey questionnaires were caregivers who are working in 160 child development centers of the 160 parishes in Ubon Ratchathani province. The data was analyzed by percentages, means and standard deviations and Pearson Product Moment Correlation Coefficient. Result: The results showed that the majority were female (96.3%), average age 41 years (68.3%), marital status were couples (85.7%) and studied in undergraduate (75.2%). with a period of performance as teachers in child development centers range from 10 to 14 years were percentage 58.7 and 71.8 percent of them had been trained by health worker about the control HFMD. The knowledge for preventive in hand foot mouth disease on child caregivers was at high level. The mean score was 2.76 (S.D. = 0.114). The attitude of child caregivers was at a moderate level. Its mean score was 2.28 (S.D. = 0.247). On the other hand, the level of environmental management to prevent HFMD was low. The mean score was 1.34 (S.D. = 0.215). The factor of personal characteristics as gender, age, educational level, duration at work, knowledge and attitude of preventive HFMD was associated with Preventive of Behaviors to a statistically significant level (p<0.05 respectively). Conclusion: These results should be concerned to develop knowledge and improving practice for preventive hand foot mouth disease of child caregivers in child development centers by training. Preparation of media education, Surveillance of hand foot mouth disease and health behaviors promotion with community participation need to be supported continuously.

Keywords: preventive behavior, child development center, hand foot mouth disease, Thailand

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Authors: Piyaorn Wajanatinapart, Diane R. Lauver

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The number of persons with dementia (PWD) has increased. Informal caregivers are the major providing care. They can have perceived gains and burdens. Caregivers who reported high in perceived gains may report low in burdens and better health. Gaps of caregiving literature were: no report psychometrics in a few studies and unclear definitions of gains; most studies with no theory-guided and conducting in Western countries; not fully described relationships among caregiving variables: motivations, satisfaction with psychological needs, social support, gains, burdens, and physical and psycho-emotional health. Those gaps were filled by assessing psychometric properties of selected measures, providing clearly definitions of gains, using self-determination theory (SDT) to guide the study, and developing the study in Thailand. The study purposes were to evaluate six measures for internal consistency reliability, content validity, and construct validity. This study also examined relationships of caregiving variables: motivations (controlled and autonomous motivations), satisfaction with psychological needs (autonomy, competency, and relatedness), perceived social support, perceived gains, perceived burdens, and physical and psycho-emotional health. This study was a cross-sectional and correlational descriptive design with two convenience samples. Sample 1 was five Thai experts to assess content validity of measures. Sample 2 was 146 Thai caregivers of PWD to assess construct validity, reliability, and relationships among caregiving variables. Experts rated questionnaires and sent them back via e-mail. Caregivers answered questionnaires at clinics of four Thai hospitals. Data analysis was used descriptive statistics and bivariate and multivariate analyses using the composite indicator structural equation model to control measurement errors. For study results, most caregivers were female (82%), middle age (M =51.1, SD =11.9), and daughters (57%). They provided care for 15 hours/day with 4.6 years. The content validity indices of items and scales were .80 or higher for clarity and relevance. Experts suggested item revisions. Cronbach’s alphas were .63 to .93 of ten subscales of four measures and .26 to .57 of three subscales. The gain scale was acceptable for construct validity. With controlling covariates, controlled motivations, the satisfaction with three subscales of psychological needs, and perceived social support had positive relationships with physical and psycho-emotional health. Both satisfaction with autonomy subscale and perceived social support had negative relationship with perceived burdens. The satisfaction with three subscales of psychological needs had positive relationships among them. Physical and psycho-emotional health subscales had positive relationships with each other. Furthermore, perceived burdens had negative relationships with physical and psycho-emotional health. This study was the first use SDT to describe relationships of caregiving variables in Thailand. Caregivers’ characteristics were consistent with literature. Four measures were valid and reliable except two measures. Breadth knowledge about relationships was provided. Interpretation of study results was cautious because of using same sample to evaluate psychometric properties of measures and relationships of caregiving variables. Researchers could use four measures for further caregiving studies. Using a theory would help describe concepts, propositions, and measures used. Researchers may examine the satisfaction with psychological needs as mediators. Future studies to collect data with caregivers in communities are needed.

Keywords: caregivers, caregiving, dementia, measures

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Authors: Yu-Ching Liu

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Background: Family numbers usually take responsibility for taking care of their elderly relatives, especially parents. Caring for a patient with chronic diseases is a stressful experience, which makes carers suffer physical and mental health stress, difficulties maintaining family relationships and issues in participating in the labor market, which may lower their quality of life (QoL). The issue of providing care to relatives with chronic illness has been widely explored in Taiwan, but most studies focus on the need for full-time caregivers. Objective: The main goal of this study was to examine the topic of working carers involved in the decision-making process of LTC services and to explore what affects working carers considering when they choose the care services for their disabled, elderly relatives. Method: A total of 7 working caregivers were enrolled in this study. A face-to-face and semi-structured in-depth qualitative interview study were conducted to explore the caregivers' perspectives. Results: Working carers have a positive experience of using LTC service because it allows them to kill two birds with one stone, continue employment, and care for an elderly disabled relative. However, working carers have still been struggling to find friendly community-based LTC services. There were no longer available community services that could be used with the illness condition of patients getting worse. As such, patients have to be cared for at home, which might increase the caregiver burden of carers. Conclusion: Working family caregivers suffer from heavy physical and psychological burdens as they not only have to maintain their employment but care for elderly disabled relatives; however, the current support provided is insufficient. The design of services should consider working carers' employment situation and need rather than the only caring situation of patients at home.

Keywords: family caregiver, Long-term care, work-life balance, decision-making

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Authors: Ramesh Chand Chauhan, Sanjay Kumar Rai, Shashi kant, Rakesh Lodha, Nand Kumar

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Background: With a better understanding of HIV pathogenesis and availability of antiretroviral therapy more children are growing and entering in teenage group; informing children of their own HIV status has become an important aspect of long-term disease management. There is little evidence of how and when this type of disclosure takes place in a resource-limited setting. Methods: A cross-sectional study was conducted from June 2010 to May 2011 among a dyads of 156 HIV-infected children and their caregivers, those were visiting pediatric clinic at a tertiary care hospital in Delhi, India. The study protocol was approved by the Institute Ethics Committee. After taking written informed consent; pretested structured questionnaire was administered to caregivers during routine clinic visits. Information regarding socio-demographic characteristics, awareness of HIV infection status among children and their perception regarding disclosure was collected. Mean and frequencies were calculated and chi-square and logistic regression test were applied. Results: The mean age of children was 8.4 ±3.45 years. Among them 73.7% were male and 39.1% were orphans. Among 156 enrolled children, 74.4% (n=116) were of ≥ 6 years and were assessed for disclosure. Only 18.1% (n=21) children had been informed of their HIV status. Of those under 9 years, 6.4% knew their status, whereas 18.4% of 9-11 years and 35.5% of 12-14 years children knew they had HIV. Awareness among males (23.3%) was higher than females (3.3%). Both age and sex of child were significantly (p<0.01) associated with disclosure status. Other factors favoring disclosure were orphan-hood, non-perinatal mode of transmission (OR = 4.32; 95% CI 1.01-7.12), ART initiation (OR = 4.21; 95% CI 1.03-6.98), and caregiver educated beyond primary level (OR = 1.89; 95% CI 1.03-3.26). Repeated enquiry regarding the visit to clinic was the most common reason (66.6%) for disclosure. In 52.4% children disclosure was done with the involvement of other family members. 82.5% caregivers felt the age of > 10 years is appropriate for disclosing the HIV infection status to the child. Conclusion: Detailed guidelines on disclosure are required focusing on children of school-going age with perinatal infection who are not on ART and with caregivers of low educational status.

Keywords: HIV, children, India, disclosure

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Authors: Rabbya Ashrafi, Mohammad Tarikul Islam , Al-Amin Bhuiyan, Aminur Rahman

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Injury is the leading killer of children in Bangladesh. Anchal (community crèche) is an effective intervention to prevent injuries among children under 5. Through the SoLiD project, 1,600 Anchals are in place in three sub-districts in Bangladesh. The objectives of the Anchal are to provide supervision and early childhood development stimulations (ECD) to the children. A locally trained caregiver supervises 20-25 children, 9 to 59 months old, from 9 a.m. to 1 p.m., six days a week. Although it was found effective, during its implementation phase several challenges were noticed. To identify challenges and means to overcome those to improve the Anchal activities. In-depth interviews were conducted with Anchal caregivers, their supervisors, and trainers. Focus group discussions were conducted with the mothers of the Anchal children. The study was conducted in the Manohardi sub-district in November 2015. Decay of knowledge and skills after 2-3 months of training, lack of formal certification and inappropriate selection of women as Anchal caregivers, and enrollment of small children (less than 12 months) were the important challenges. The reluctance of parents to send children to the Anchal at the proper time, failure to engage children in various ECD activities, ineffective conduction of parents and community leaders meeting by the Anchal caregivers, insufficient accommodation, and poor supply of logistics for children were also the important challenges. The suggestion for improvement was to recruit caregivers as per standard criteria, provide them refreshers training at three months intervals, train them on effective conduction of parents and community leaders meetings, provide a formal certificate, and ensure regular supply of logistics. The identified challenges are needed to be addressed by utilizing the suggestions obtained from the IDIs and FGDs to make the Anchal intervention more effective in preventing childhood injuries.

Keywords: comunity crech, earlychildhood development, measures for improvement, childhood injury

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Authors: Lamia Bouzgarrou, Amira Omrane, Naima Bouatay, Chaima Harrathi, Samia Machroughl, Ahmed Mhalla

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Background and Aims: Professionals of health care sector are exposed to psychosocial constraints like stress, harassment, violence, which can lead to many mental health problems such as, depression, addictive behavior, and burn-out. Moreover, it’s well established that caregivers affected to intensive care units are more likely to experience such constraints and mental health problems. For these caregivers, the mental health state may affect care quality and patient’s safety. This study aims either to identify occupational psychosocial constraints and their mental health consequences among paramedical and medical caregivers affected to intensive units in Tunisian public hospital. Methods: An exhaustive three months cross-sectional study conducted among medical and paramedical staffs of intensive care units in three Tunisian university hospitals. After informed consent collection, we evaluated work-related stress, workplace harassment, depression, anxious troubles, addictive behavior, and self-esteems through an anonymous self-completed inquiry form. Five validated questionnaires and scales were included in this form: Karasek's Job Content Questionnaire, Negative Acts Questionnaire, Rosenberg, Beck depression inventory and Hamilton Anxiety scale. Results: We included 129 intensive unit caregivers; with a mean age of 36.1 ± 1.1 years and a sex ratio of 0.58. Among these caregivers, 30% were specialist or under-specialization doctors. The average seniority in the intensive care was 6.1 ± 1.2 (extremes=1 to 40 years). Atypical working schedules were noted among 36.7% of the subjects with an imposed choice in 52.4% of cases. During the last 12 months preceding the survey, 51.7% of care workers were absent from work because of a health problem with stops exceeding 15 days in 11.7%. Job strain was objective among 15% of caregivers and 38.33% of them were victims of moral harassment. A low or very low self-esteem was noted among 40% of respondents. Moreover, active smoking was reported by 20% subjects, alcohol consumption by 13.3% and psychotropic substance use by 1.7% of them. According to Beck inventory and Hamilton Anxiety scale, we concluded that 61.7% of intensive care providers were depressed, with 'severe' depression in 13.3% of cases and 49.9% of them present anxious disorders. Multivariate analysis objective that, job strain was correlated with young age (p=0.005) and shorter work seniority (p=0.001). Workplace and moral harassment was more prevalent among females (p=0.009), under-specialization doctor (p=0.021), those affected to atypical schedules (p=0.008). Concerning depression, it was more prevalent among staff in job strain situation (p = 0.004), among smokers caregivers (p = 0.048), and those with no leisure activity (p < 0.001). Anxious disorders were positively correlated to chronic diseases history (p = 0.001) and work-bullying exposure (p = 0.004). Conclusions: Our findings reflected a high frequency of caregivers who are under stress at work and those who are victims of moral harassment. These health professionals were at increased risk for developing psychiatric illness such depressive and anxious disorders and addictive behavior. Our results suggest the necessity of preventive strategies of occupational psychosocial constraints in order to preserve professional’s mental health and maximize patient safety and quality of care.

Keywords: health care sector, intensive care units, mental health, psychosocial constraints

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Authors: Lindy Adoma Dampare, Marina Aferiba Tandoh

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Sickle cell disease (SCD) is an inherited blood disorder that mostly affects individuals in sub-Saharan Africa. Nutritional deficiencies have been well established in SCD patients. In Ghana, studies have revealed the prevalence of malnutrition, especially amongst children with SCD and hence the need to develop an evidence-based comprehensive nutritional therapy for SCD to improve their nutritional status. The aim of the study was to develop and assess the effect of a nutrition education material on the nutritional status of SCD patients in Ghana. This was a pre-post interventional study. Patients between the ages of 2 to 60 years were recruited from the Tema General Hospital. Following a baseline nutrition knowledge (NK), beliefs, sanitary practice and dietary consumption pattern assessment, a twice-monthly nutrition education was carried out for 3 months, followed by a post-intervention assessment. Nutritional status of SCD patients was assessed using a 3-days dietary recall and anthropometric measurements. Nutrition education (NE) was given to SCD adults and caregivers of SCD children. Majority of the caregivers (69%) and SCD adult (82%) at baseline had low NK. The level of NK improved significantly in SCD adults (4.18±1.83 vs. 10.00±1.00, p<0.001) and caregivers (5.58 ± 2.25 vs.10.44± 0.846, p<0.001) after NE. Increase in NK improved dietary intake and dietary consumption pattern of SCD patients. Significant increase in weight (23.2±11.6 vs. 25.9±12.1, p=0.036) and height (118.5±21.9 vs. 123.5±22.2, p=0.011) was observed in SCD children at post intervention. Stunting (10.5% vs. 8.6%, p=0.62) and wasting (22.1% vs. 14.4%, p=0.30) reduced in SCD children after NE although not statistically significant. Reduction (18.2% vs. 9.1%) in underweight and an increase (18.2% vs. 27.3%) in overweight SCD adults was recorded at post intervention. Fat mass remained the same while high muscle mass increased (18.2% vs. 27.3%) at post intervention in SCD adult. Anaemic status of SCD patients improved at post intervention and the improvement was statistically significant amongst SCD children. Nutrition education improved the NK of SCD caregivers and adults hence, improving the dietary consumption pattern and nutrient intake of SCD patients. Overall, NE improved the nutritional status of SCD patients. This study shows the potential of nutrition education in improving the nutritional knowledge, dietary consumption pattern, dietary intake and nutritional status of SCD patients, and should be further explored.

Keywords: sickle cell disease, nutrition education, dietary intake, nutritional status

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Authors: Mirim Kim, Won-Oak Oh

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Purpose: The purpose of this study was to identify hospitalized children's fall risk factors, fall prevention status and fall prevention strategies recognized by nurses and caregivers of hospitalized children and present an ecological model for fall preventive management in hospitalized children. Method: The participants of this study were 14 nurses working in medical institutions and having more than one year of child care experience and 14 adult caregivers of children under 6 years of age receiving inpatient treatment at a medical institution. One to one interview was attempted to identify their perception of fall preventive management. Transcribed data were analyzed through latent content analysis method. Results: Fall risk factors in hospitalized children were 'unpredictable behavior', 'instability', 'lack of awareness about danger', 'lack of awareness about falls', 'lack of child control ability', 'lack of awareness about the importance of fall prevention', 'lack of sensitivity to children', 'untidy environment around children', 'lack of personalized facilities for children', 'unsafe facility', 'lack of partnership between healthcare provider and caregiver', 'lack of human resources', 'inadequate fall prevention policy', 'lack of promotion about fall prevention', 'a performanceism oriented culture'. Fall preventive management status of hospitalized children were 'absence of fall prevention capability', 'efforts not to fall', 'blocking fall risk situation', 'limit the scope of children's activity when there is no caregiver', 'encourage caregivers' fall prevention activities', 'creating a safe environment surrounding hospitalized children', 'special management for fall high risk children', 'mutual cooperation between healthcare providers and caregivers', 'implementation of fall prevention policy', 'providing guide signs about fall risk'. Fall preventive management strategies of hospitalized children were 'restrain dangerous behavior', 'inspiring awareness about fall', 'providing fall preventive education considering the child's eye level', 'efforts to become an active subject of fall prevention activities', 'providing customed fall prevention education', 'open communication between healthcare providers and caregivers', 'infrastructure and personnel management to create safe hospital environment', 'expansion fall prevention campaign', 'development and application of a valid fall assessment instrument', 'conversion of awareness about safety'. Conclusion: In this study, the ecological model of fall preventive management for hospitalized children reflects various factors that directly or indirectly affect the fall prevention of hospitalized children. Therefore, these results can be considered as useful baseline data for developing systematic fall prevention programs and hospital policies to prevent fall accident in hospitalized children. Funding: This study was funded by the National Research Foundation of South Korea (grant number NRF-2016R1A2B1015455).

Keywords: fall down, safety culture, hospitalized children, risk factors

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Authors: M. D. Antoine

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Despite the widespread use of complementary and alternative medicine (CAM) for autistic children, little is known about the communication flow between the different parties involved in autism care (e.g., parents/caregivers, conventional providers, alternative practitioners). This study aimed to describe how communication occurs through the first year following an autism spectrum disorder (ASD) diagnosis to identify challenges and potential barriers to communication within the healthcare system in Ottawa, Canada. From an ecological perspective, we collected qualitative data through 12 semi-structured interviews with six parents/caregivers, three conventional providers (e.g., family doctor, neurodevelopmental pediatrician, psychologist), and three alternative practitioners (e.g., naturopath, occupational therapist, speech and language pathologist) operating in Ottawa. We interpreted the data using thematic analysis. Findings revealed communication challenges between the parents/caregivers and conventional providers while they experience better communication flow with fewer challenges in alternative care settings. However, parents/caregivers are the only links between the health professionals of both streams. From the five contexts examined: organizational, interpersonal, media, cultural, and political-legal, we found four themes (provider knowledge, care integration, flexible care, and time constraints) underlining specific barriers to communication flow between the parties involved in the care of autistic children. The increasing interest in alternative medicine is forcing changes in the healthcare system. Communications occur outside the norms making openings for better communication and information-sharing increasingly essential. Within the identified themes in the current study, the necessity for better communication between all parties involved in the care of autistic children is evident. More ASD and CAM-related training for providers would support effective parent/caregiver-provider communication. The findings of the current study contribute to a better understanding of the role of communication in the care management of autism, which has implications for effective autism care.

Keywords: alternative medicine, autism care management, autism spectrum disorder, conventional medicine, parent-provider communication

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Authors: Morgan Dempsey, Sam Lewis, Maggie Pierce, Alex Goodman

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This research investigates the impact of equine-assisted therapy programs on occupational engagement for children with intellectual and developmental disabilities. There is a general lack of evidence for equine-based services for this population, so this research aims to decrease gaps in the current literature. To gain comprehensive insight, data will be collected from both the child and their caregiver. This study takes a qualitative approach utilizing online surveys and in-person guided interviews. The participants are individuals ages 4-17 with a diagnosed intellectual or developmental disability who are currently participating in a PATH int. certified equine-assisted therapy program. Also, caregivers of individuals who meet this criterion are included. This study decreases gaps in the literature by providing comprehensive data regarding the impacts of these services on occupational engagement. The addressed domains are physical, behavioral, emotional, and social functioning, as well as overall activity engagement and impacts in everyday life. With a better understanding of how equine-assisted therapy affects relevant outcomes for children with disabilities, an increased number of occupational therapists can implement these uniquely effective services while adhering to standards of evidence-based practice. Ultimately, this research strives to contribute to generalizable data in occupational therapy by supporting the implementation of equine-assisted services for children with intellectual and/or developmental disabilities and their caregivers/families.

Keywords: occupational therapy, pediatric, rehabilitation, hippotherapy

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Authors: Joselyne Rugema, Innocent Twagirayezu, Aimable Nkurunziza, Alice Nyirazigama, Vedaste Bagweneza, Belancilla Nikuze

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Introduction: Burn injuries among children are associated with major complications. Early health care seeking and appropriate management are crucial in saving lives and preventing complications. Objective: To assess home-based management practices and health seeking behaviors among caregivers of children admitted with burn injuries at selected hospitals in Rwanda. Methods: A cross-sectional descriptive study was conducted among caregivers of children admitted with burn injuries at three hospitals in Kigali. A semi-structured questionnaire was used to collect the data that were analyzed using SPSS version 25. Statistical software Results: Most of the children with burn injuries had median age of 36 months, and 89.9% had second-degree burns. 92.4% of burns happened at home and 63.3% were scalds. Only 18% of the caregivers seek care immediately after children’s burn injuries. About 2.5% reported not seeking any care after burn injuries and 3.8% sought care from traditional healers. 65.9% of the participants used wrong practices before seeking care such as applying honey, cooking oil and urine to the burn injuries. Transportation difficulties before consulting health facilities were the main reported faced barriers to success health care (86.1%). Conclusion: Immediate health seeking behavior was low. Wrong practices including application of harmful products to burn injuries are common in the community. There is a need for community based interventions to prevent burn injuries at home and to empower the community with appropriate actions to take after injuries.

Keywords: adolescent pregnancy, qualitative design, childbearing, teenage mothers

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Authors: Divi Sharma

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The emergence of positive behaviour support (PBS) is directly linked to applied behaviour analysis that incorporates evidence-based approaches to addressing ethical challenges and improving autonomy, participation, and the overall quality of life of people living and learning in complex social environments. Its features include lifestyle improvement, collaboration with general caregivers, tracking progress with sound steps, comprehensive performance-based interventions, striving for contextual equality, and ensuring entry and implementation. This document aims to summarize its features with the support of case examples such as involving caregivers to play an active role in behavioural interventions, creating effective interventions within natural practices. Additionally, dealing with lifestyle changes, as well as a wide variety of behavioural changes, develop strong strategies which reduce professional dependence.

Keywords: positive behaviour support, quality of life, performance-based interventions, behavioural changes, participation

Procedia PDF Downloads 169

Authors: Ngoc Dao

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State Paid Leave Programs (PFL) complement the Federal Family and Medical Leave Act (FMLA) by offering workers time off to take care of their newborns or sick family members with supplemental income, and further job protection. Up to date, four states (California, New Jersey, Rhode Island, and New York) implemented paid leave policies. This study adds further understanding of how state PFL policies help working families with elder parents improve their work balance by examining the paid leave policies on labor outcomes. Early findings suggest State Paid Leave Policies reduced the likelihood to exit the labor market by 1.6 percentage points, with larger effects among paid leave policies with job protection feature. In addition, the results imply job protection in paid leave policies matters in helping employed caregivers attach to the labor market.

Keywords: family paid leave, working caregivers, employment, social welfare

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Authors: Ching-Sung Wang, Teng-Wei Wang, Zhen-Ting Zheng

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This study mainly concerns a safety device designed for child care. When children are out of sight or the caregivers cannot always pay attention to the situation, through the functions of this device, caregivers can immediately be informed to make sure that the children do not get lost or hurt, and thus, ensure their safety. Starting from this concept, a device is produced based on the relatively low-cost Bluetooth piconet system and a three-axis gyroscope sensor. This device can transmit data to a mobile phone app through Bluetooth, in order that the user can learn the situation at any time. By simply clipping the device in a pocket or on the waist, after switching on/starting the device, it will send data to the phone to detect the child’s fall and distance. Once the child is beyond the angle or distance set by the app, it will issue a warning to inform the phone owner.

Keywords: children care, piconet system, three-axis gyroscope, distance detection, falls detection

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Authors: D. Estrella, A. Silva, R. Zapata, H. Rubio

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A total of 100 primary caregivers (mothers, fathers, grandparents) with at least one child or grandchild with a diagnosis of congenital bilateral profound deafness were assessed in order to evaluate the functionality of families with a deaf member, who was evaluated by specialists in audiology, molecular biology, genetics and psychology. After confirmation of the clinical diagnosis, DNA from the patients and parents were analyzed in search of the 35delG deletion of the GJB2 gene to determine who possessed the mutation. All primary caregivers were provided psychological support, regardless of whether or not they had the mutation, and prior and subsequent, the family APGAR test was applied. All parents, grandparents were informed of the results of the genetic analysis during the psychological intervention. The family APGAR, after psychological and genetic counseling, showed that 14% perceived their families as functional, 62% moderately functional and 24% dysfunctional. This shows the importance of psychological support in family functionality that has a direct impact on the quality of life of these families.

Keywords: deafness, psychological support, family, adaptation to disability

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Authors: Nuraisyah H. Zulkifley, Suriani Ismail, Rosliza Abdul Manaf, Poh Y. Lim

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Taking care of a person with dementia (PWD) is one of the most problematic and challenging caregiving situations. Without proper support, caregiver would need to deal with the impact of caregiving that would lead to caregiver burden. One of the most common tools used to measure caregiver burden among caregivers of PWD is Zarit Burden Interview (ZBI). A systematic review has been conducted through searching Medline, Science Direct, Cochrane Library, Embase, PsycINFO, ProQuest, and Scopus databases to identify relevant articles that elaborate on intervention and outcomes on ZBI among informal caregiver of PWD. The articles were searched in October 2019 with no restriction on language or publication status. Inclusion criteria are randomized control trial (RCT) studies, participants were informal caregivers of PWD, ZBI measured as outcomes, and intervention group was compared with no intervention control or usual care control. Two authors reviewed and extracted the data from the full-text articles. From a total of 344 records, nine studies were selected and included in this narrative review, and eight studies were included in the meta-analysis. The types of interventions that were implemented to ease caregiver burden are psychoeducation, physical activity, psychosocial, and computer-based intervention. The meta-analysis showed that there is a significant difference in the mean score of ZBI (p = 0.006) in the intervention group compared to the control group after implementation of intervention. In conclusion, interventions such as psychoeducation, psychosocial, and physical activity can help to reduce the burden experiencing by the caregivers of PWD.

Keywords: dementia, informal caregiver, randomized control trial, Zarit burden interview

Procedia PDF Downloads 179