Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 7

caregivers Related Abstracts

7 Illness Representations of Injury: A Comparison of Patients and Their Primary Caregivers

Authors: Bih-O Lee, Hsiu-Wan Hsieh, Hsiu-Chen Liu, Mer Yu Pan


Background: Illness perceptions are developed when people face health-threatening situations. Previous research suggests that understanding discrepancies between illness perceptions of patients and caregivers may need to improve quality of health care. Objective: This study examined the differences between illness perceptions of injured patients and those of their caregivers. Methods: Comparative study design was used. The study setting was the surgical wards of a teaching hospital in Taiwan. Participants were 127 pairs of injured patients and their caregivers. The participants completed socio-demographic data and completed the Chinese Illness Perception Questionnaire Revised-Trauma, which comprises eight subscales. Clinical data of the injured patients was obtained from medical records. Results: This study found that injured patients were more pessimistic than their caregivers about the injury. There were significant differences between patients and caregivers insofar as patients perceived more physical symptoms, scored higher in terms of reasons for their injury, had more negative emotions and experienced more consequences than caregivers. Elderly caregivers and caregivers for patients who were over 65, severely injured and admitted to an ICU perceived more negative perceptions about the injury. Conclusions: This study indicated that patients and caregivers had negative illness representations several months after injury although the intensity of their perceptions was different. The interventions should highlight the need to assist patients and caregivers after injury.

Keywords: Injury, comparative study, illness representations, caregivers

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6 Assessing Measures and Caregiving Experiences of Thai Caregivers of Persons with Dementia

Authors: Piyaorn Wajanatinapart, Diane R. Lauver


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: Dementia, measures, caregivers, caregiving

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5 Health-Related Quality of Life of Caregivers of Institution-Reared Children in Metro Manila: Effects of Role Overload and Role Distress

Authors: Ian Christopher Rocha


This study aimed to determine the association of the quality of life (QOL) of the caregivers of children in need of special protection (CNSP) in child-caring institutions in Metro Manila with the levels of their role overload (RO) and role distress (RD). The CNSP in this study covered the orphaned, abandoned, abused, neglected, exploited, and mentally-challenged children. In this study, the domains of QOL included physical health (PH), psychological health, social health (SH), and living conditions (LC). It also intended to ascertain the association of their personal and work-related characteristics with their RO and RD levels. The respondents of this study were 130 CNSP caregivers in 17 residential child-rearing institutions in Metro Manila. A purposive non-probability sampling was used. Using a quantitative methodological approach, the survey method was utilized to gather data with the use of a self-administered structured questionnaire. Data were analyzed using both descriptive and inferential statistics. Results revealed that the level of RO, the level of RD, and the QOL of the CNSP caregivers were all moderate. Data also suggested that there were significant positive relationships between the RO level and the caregivers’ characteristics, such as age, the number of training, and years of service in the institution. At the same time, the findings revealed that there were significant positive relationships between the RD level and the caregivers’ characteristics, such as age and hours of care rendered to their care recipients. In addition, the findings suggested that all domains of their QOL obtained significant relationships with their RO level. For the correlations of their level of RO and their QOL domains, the PH and the LC obtained a moderate negative correlation with the RO level while the rest of the domains obtained weak negative correlations with RO level. For the correlations of their level of RD and the QOL domains, all domains, except SH, obtained strong negative correlations with the level of RD. The SH revealed to have a moderate negative correlation with RD level. In conclusion, caregivers who are older experience higher levels of RO and RD; caregivers who have more training and years of service experience the higher level of RO; and caregivers who have longer hours of rendered care experience the higher level of RD. In addition, the study affirmed that if the levels of RO and RD are high, the QOL is low, and vice versa. Therefore, the RO and RD levels are reliable predictors of the caregivers’ QOL. In relation, the caregiving situation in the Philippines revealed to be unique and distinct from other countries because the levels of RO and RD and the QOL of Filipino CNSP caregivers were all moderate in contrast with their foreign counterparts who experience high caregiving RO and RD leading to low QOL.

Keywords: Physical Health, Quality of Life, Psychological Health, Social Health, caregivers, children in need of special protection, living conditions, role overload, role distress

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4 Coping Strategies among Caregivers of Children with Autism Spectrum Disorders: A Cluster Analysis

Authors: Noor Ismael, Lisa Mische Lawson, Lauren Little, Murad Moqbel


Background/Significance: Caregivers of children with Autism Spectrum Disorders (ASD) develop coping mechanisms to overcome daily challenges to successfully parent their child. There is variability in coping strategies used among caregivers of children with ASD. Capturing homogeneity among such variable groups may help elucidate targeted intervention approaches for caregivers of children with ASD. Study Purpose: This study aimed to identify groups of caregivers of children with ASD based on coping mechanisms, and to examine whether there are differences among these groups in terms of strain level. Methods: This study utilized a secondary data analysis, and included survey responses of 273 caregivers of children with ASD. Measures consisted of the COPE Inventory and the Caregiver Strain Questionnaire. Data analyses consisted of cluster analysis to group caregiver coping strategies, and analysis of variance to compare the caregiver coping groups on strain level. Results: Cluster analysis results showed four distinct groups with different combinations of coping strategies: Social-Supported/Planning (group one), Spontaneous/Reactive (group two), Self-Supporting/Reappraisal (group three), and Religious/Expressive (group four). Caregivers in group one (Social-Supported/Planning) demonstrated significantly higher levels than the remaining three groups in the use of the following coping strategies: planning, use of instrumental social support, and use of emotional social support, relative to the other three groups. Caregivers in group two (Spontaneous/Reactive) used less restraint relative to the other three groups, and less suppression of competing activities relative to the other three groups as coping strategies. Also, group two showed significantly lower levels of religious coping as compared to the other three groups. In contrast to group one, caregivers in group three (Self-Supporting/Reappraisal) demonstrated significantly lower levels of the use of instrumental social support and the use of emotional social support relative to the other three groups. Additionally, caregivers in group three showed more acceptance, positive reinterpretation and growth coping strategies. Caregivers in group four (Religious/Expressive) demonstrated significantly higher levels of religious coping relative to the other three groups and utilized more venting of emotions strategies. Analysis of Variance results showed no significant differences between the four groups on the strain scores. Conclusions: There are four distinct groups with different combinations of coping strategies: Social-Supported/Planning, Spontaneous/Reactive, Self-Supporting/Reappraisal, and Religious/Expressive. Each caregiver group engaged in a combination of coping strategies to overcome the strain of caregiving.

Keywords: autism, Cluster Analysis, coping strategies, caregivers

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3 Informational Support, Anxiety and Satisfaction with Care among Family Caregivers of Patients Admitted in Critical Care Units of B.P. Koirala Institute of Health Sciences, Nepal

Authors: Rosy Chaudhary, Pushpa Parajuli


Background and Objectives: Informational support to family members has a significant potential for reducing this distress related to hospitalization of their patient into the critical care unit, enabling them to cope better and support the patient. The objective of the study is to assess family members’ perception of informational support, anxiety, satisfaction with care and to reveal the association with selected socio-demographic variables and to investigate the correlation between informational support, anxiety and satisfaction with care. Materials and Methods: A descriptive cross-sectional study was conducted in 39 family caregivers of patients admitted in critical care unit of BPKIHS(B.P. Koirala Institute of Health Sciences). Consecutive sampling technique was used wherein data was collected over duration of one month using interview schedule. Descriptive and inferential statistics were used. Results: The mean age of the respondents was 34.97 ± 10.64 and two third (66.70%) were male. Mean score for informational support was 25.72(SD = 5.66; theoretical range of 10 - 40). Mean anxiety was 10.41 (SD = 5.02; theoretical range of 7 - 21). Mean score for satisfaction with care was 40.77 (SD = 6.77; theoretical range of 14 - 64). A moderate positive correlation was found between informational support and satisfaction with care (r = 0.551, p < .001) and a moderate negative correlation was found between anxiety and satisfaction with care (r = -0.590; p = 0.000). No relationship was noted between informational support and anxiety. Conclusion: The informational support and satisfaction of the family caregivers with the care provided to their patients was satisfactory. More than three fourth of the family caregivers had anxiety; the factors associated being educational status of the caregivers, the family income and duration of visiting hours. There was positive correlation between informational support and satisfaction with care provided justifying the need for comprehensive information to the family caregivers by the health personnel. There was negative correlation between anxiety and satisfaction with care.

Keywords: Anxiety, Family, caregivers, critical care unit, informational support

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2 Risk and Protective Factors for the Health of Primary Care-Givers of Children with Autism Spectrum Disorders or Intellectual Disability: A Narrative Review and Discussion

Authors: Jenny Fairthorne, Yuka Mori, Helen Leonard


Background: Primary care-givers of children with autism spectrum disorder (ASD) or intellectual disability (ID) have poorer health and quality of life (QoL) than primary care-givers (hereafter referred to as just care-givers) of typically developing children. We aimed to review original research which described factors impacting the health of care-givers of children with ASD or ID and to discuss how these factors might influence care-giver health. Methods: We searched Web of Knowledge, Medline, Scopus and Google Scholar using selections of words from each of three groups. The first comprised terms associated with ASD and ID and included autism, pervasive development disorder, intellectual disability, mental retardation, disability, disabled, Down and Asperger. The second included terms related to health such as depression, physical, mental, psychiatric, psychological and well-being. The third was terms related to care-givers such as mother, parent and care-giver. We included an original paper in our review if it was published between 1st January 1990 and 31st December, 2016, described original research in a peer-reviewed journal and was written in English. Additional criteria were that the research used a study population of 15 persons or more; described a risk or protective factor for the health of care-givers of a child with ASD, ID or a sub-type (such as ASD with ID or Down syndrome). Using previous research, we developed a simple and objective five-level tool to assess the strength of evidence provided by the reviewed papers. Results: We retained 33 papers. Factors impacting primary care-giver health included child behaviour, level of support, socio-economic status (SES) and diagnostic issues. Challenging child behaviour, the most commonly identified risk factor for poorer care-giver health and QoL was reported in ten of the studies. A higher level of support was associated with improved care-giver health and QoL. For example, substantial evidence indicated that family support reduced care-giver burden in families with a child with ASD and that family and neighbourhood support was associated with improved care-giver mental health. Higher socio-economic status (SES) was a protective factor for care-giver health and particularly maternal health. Diagnostic uncertainty and an unclear prognosis are factors which can cause the greatest concern to care-givers of children with ASD and those for whom a cause of their child’s ID has not been identified. We explain how each of these factors might impact caregiver health and how they might act differentially in care-givers of children with different types of ASD or ID (such as Down syndrome and ASD without ID). Conclusion: Care-givers of children with ASD may be more likely to experience many risk factors and less likely to experience the protective factors we identified for poorer mental health. Interventions to reduce risk factors and increase protective factors could pave the way for improved care-giver health. For example, workshops to train care-givers to better manage challenging child behaviours and earlier diagnosis of ASD (and particularly ASD without ID) would seem likely to improve care-giver well-being. Similarly, helping to expand support networks might reduce care-giver burden and stress leading to improved health.

Keywords: Health, autism, Intellectual Disability, Mothers, review, caregivers

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1 Exploring Coping Strategies among Caregivers of Children Who Have Survived Cancer

Authors: Noor Ismael, Somaya Malkawi, Sherin Al Awady, Taleb Ismael


Background/Significance: Cancer is a serious health condition that affects individuals’ quality of life during and after the course of this condition. Children who have survived cancer and their caregivers may deal with residual physical, cognitive or social disabilities. There is little research on caregivers’ health and wellbeing after cancer. To the authors’ best knowledge; there is no specific research about how caregivers cope with everyday stressors after cancer. Therefore, this study aimed to explore the coping strategies that caregivers of children who have survived cancer utilize to overcome everyday stressors. Methods: This study utilized a descriptive survey design. The sample consisted of 103 caregivers, who visited the health and wellness clinic at a national cancer center (additional demographics are presented in the results). The sample included caregivers of children who were off cancer treatments for at least two years from the beginning of data collection. The institution’s internal review board approved this study. Caregivers who agreed to participate completed the survey. The survey collected caregiver reported demographic information and the Brief COPE which measures caregivers' frequency of engaging in certain coping strategies. The Brief COPE consisted of 14 coping sub-scales, which are self-distraction, active coping, denial, substance use, use of emotional support, use of instrumental support, behavioral disengagement, venting, positive reframing, planning, humor, acceptance, religion, and self-blame. Data analyses included calculating sub-scales’ scores for the fourteen coping strategies and analysis of frequencies of demographics and coping strategies. Results: The 103 caregivers who participated in this study were 62% mothers, 80% married, 45% finished high school, 50% do not work outside the house, and 60% have low family income. Result showed that religious coping (66%) and acceptance (60%) were the most utilized coping strategies, followed by positive reframing (45%), active coping (44%) and planning (43%). The least utilized coping strategies in our sample were humor (5%), behavioral disengagement (8%), and substance-use (10%). Conclusions: Caregivers of children who have survived cancer mostly utilize religious coping and acceptance in dealing with everyday stressors. Because these coping strategies do not directly solve stressors like active coping and planning coping strategies, it is important to support caregivers in choosing and implementing effective coping strategies. Knowing from our results that some caregivers may utilize substance use as a coping strategy, which has negative health effects on caregivers and their children, there must be direct interventions that target these caregivers and their families.

Keywords: Cancer, stress, Coping, caregivers

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