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Item Burden of Seizure Clusters on Patients With Epilepsy and Caregivers: Survey of Patient, Caregiver, and Clinician Perspectives(Lippincott, Williams & Wilkins, 2017-11) Penovich, Patricia E.; Buelow, Janice; Steinberg, Kathy; Sirven, Joseph; Wheless, James; School of NursingObjectives: To characterize the burden of seizure clusters (SC) on patients and caregivers, a large internet-based survey was conducted. Methods: The Seizure Cluster Burden of Illness US Survey was conducted online by Harris Poll on behalf of The Epilepsy Foundation in September 2014. Respondents included adult patients 18 years and above with epilepsy or a seizure disorder who had experienced SC in the past year (defined as ≥2 seizures within 24 h outside the patient’s typical seizure pattern), caregivers providing current care for a patient with SC (adult or child), and clinicians (neurologists, epileptologists) who treat adult or pediatric patients. Responses to a wide range of topics, including emotional well-being, daily function, productivity, and approach to clinical practice, were collected. Results: There were 861 respondents (259 adult SC patients, 263 caregivers, and 339 clinicians). A majority of all respondent groups felt SC have a moderate/major negative impact on patient and caregiver quality of life, including emotional, financial, and social components. Responses indicated possible overutilization of emergency room services and underutilization of rescue treatment. Only 30% of patients reported having a seizure emergency plan. Some responses showed discrepancies between clinicians and patients/caregivers in the perceived degree of negative impact of SC and management practices for SC. Conclusions: These results suggest the need for increased education on managing SC. Clinicians need to develop seizure emergency plans and discuss rescue therapies, whereas patients and caregivers need to ask for and utilize these management strategies.Item Caregivers and community perceptions of blood transfusion for children with severe anaemia in Uganda(Wiley, 2019-02) Dhabangi, Aggrey; Idro, Richard; John, Chandy C.; Dzik, Walter H.; Opoka, Robert; Siu, Godfrey E.; Ayebare, Florence; van Hensbroek, Michael B.; Pediatrics, School of MedicineObjective To describe local perceptions of blood transfusion for children with severe anaemia in Uganda. Background Blood transfusion is a common emergency treatment for children with severe anaemia and saves millions of lives of African children. However, the perceptions of transfusion recipients have not been well studied. A better understanding of the perceived risk may improve transfusion care. Methods A qualitative study based on 16 in‐depth interviews of caregivers of transfused children, and six focus group discussions with community members was conducted in three regions of Uganda between October and November 2017. Results Caregivers of children and community members held blood transfusion in high regard and valued it as life‐saving. However, there were widespread perceived transfusion risks, including: Human immunodeficiency virus (HIV) transmission, too rapid blood infusion and blood incompatibility. Other concerns were: fatality, changes in behaviour, donor blood being ‘too strong’ and use of animal blood. In contrast, recent transfusion, older age, knowledge of HIV screening of blood for transfusion, faith in God and having a critically ill child were associated with less fear about transfusion. Respondents also emphasised challenges to transfusion services access including distance to hospitals, scarcity of blood and health workers' attitudes. Conclusion Perceptions of the community and caregivers of transfused children in Uganda about blood transfusion were complex: transfusion is considered life‐saving but there were strong perceived transfusion risks of HIV transmission and blood incompatibility. Addressing community perceptions and facilitating access to blood transfusion represent important strategies to improve paediatric transfusion care.Item Caregivers Benefit from Massage: More Isn’t Necessarily Better—Some Is Enough!(2019-09) Munk, Niki; Health Sciences, School of Health and Rehabilitation SciencesItem Caregivers’ Role-taking during the Use of Discussion Prompts in At-Home Engineering Kits(ISLS, 2021-06) Kim, Soo Hyeon; Kim, Jungsun; Library and Information Science, School of Informatics and ComputingThis study presents a video-based case study of families who used discussion prompts in the at-home engineering kits. We examine different roles that caregivers took on during the implementation of the prompts to organize families’ engineering learning activities. Narrative accounts and transcriptions were analyzed to investigate the different roles that caregivers took. Three roles emerged: caregivers as monitor; caregivers as mentor; caregivers as partner. We further coded families’ talks to investigate how three different caregivers’ roles influenced families’ engineering practices and caregiver-child talk types. Preliminary findings illustrate how three caregivers’ roles enabled and constrained different types of engineering practices and caregiver-child talk types. Findings contribute to future considerations in designing discussion prompts for at-home engineering kits.Item The Caregiver’s Role Across the Bone Marrow Transplantation Trajectory(Wolters, 2015) Von Ah, Diane; Spath, Mary; Nielsen, Adele; Fife, Betsy; School of NursingBackground: Approximately 50 000 people undergo bone marrow transplants (BMTs) each year worldwide. With the move to more outpatient and home care, family caregivers are playing an ever-increasing role. However, there is little information regarding the needs and well-being of caregivers of individuals undergoing BMT. Objective: The study purpose was to gain a better understanding of the BMT experience across the trajectory from the perspective of the family caregiver. Methods: Qualitative interviews were conducted with 15 family caregivers during and 4 months after BMT. Interviews were recorded, transcribed verbatim, and analyzed using a content analysis approach. Results: Uncertainty and need for more information were 2 major underlying themes noted across the early BMT trajectory. Caregivers reported feeling overwhelmed and juggling multiple roles, including (a) ‘‘interpreter,’’ which included obtaining and translating medical information to their partner, family, and social network; (b) ‘‘organizer,’’ which included arranging and coordinating medical appointments (pre- and post-BMT) for the patient, but also juggling the needs of immediate and extended family members; and (c) ‘‘clinician,’’ which included assessing and identifying changes in their significant other, with many reporting that they had to be ‘‘vigilant’’ about or ‘‘on top of’’ any changes. Caregivers also reported the most challenging aspects of their role were to ‘‘be strong for everyone’’ and ‘‘finding balance.’’ Conclusions: Our results underscore the unique needs of family caregivers as a consequence of BMT. Implications for Practice: A greater understanding of the adaptation of caregivers will lead to the development of effective interventions for families going through BMT.Item Central Indiana Senior Fund State of Aging in Central Indiana Report (SoAR) Newsletter No. 1(The Polis Center, Indiana University at Indianapolis, 2022-11) The Polis CenterOlder adults are the fastest growing demographic in Central Indiana. Approximately 20,000 individuals in Central Indiana reach the age of 60 every year. By the year 2030, one in every five residents will be over the age of 65. To enhance the ability of older adults to live and thrive in Central Indiana, it is important to understand the population trends and basic needs of the growing older adult demographic. The Central Indiana Senior Fund is partnering with The Polis Center at IUPUI to develop the State of Aging in Central Indiana Report, a trusted source of information about Central Indiana’s older adult population.Item Comprehensive evaluation of caregiver-reported antiretroviral therapy adherence for HIV-infected children(Springer-Verlag, 2015-04) Vreeman, Rachel C.; Nyandiko, Winstone M.; Liu, Hai; Tu, Wanzhu; Scanlon, Michael L.; Slaven, James E.; Ayaya, Samuel O.; Inui, Thomas S.; Department of Pediatrics, IU School of MedicineFor HIV-infected children, adherence to antiretroviral therapy (ART) is often assessed by caregiver report but there are few data on their validity. We conducted prospective evaluations with 191 children ages 0-14 years and their caregivers over 6 months in western Kenya to identify questionnaire items that best predicted adherence to ART. Medication Event Monitoring Systems(®) (MEMS, MWV/AARDEX Ltd., Switzerland) electronic dose monitors were used as external criterion for adherence. We employed a novel variable selection tool using the LASSO technique with logistic regression to identify items best correlated with dichotomized MEMS adherence (≥90 or <90 % doses taken). Nine of 48 adherence items were identified as the best predictors of adherence, including missed or late doses in the past 7 days, problems giving the child medicines, and caregiver-level factors like not being present at medication taking. These items could be included in adherence assessment tools for pediatric patients.Item COVID-19 Pandemic Effects on Caregivers of Youth With Type 1 Diabetes: Stress and Self-Efficacy(American Diabetes Association, 2022-03-11) Ismail, Heba M.; Hand, Breanne L.; DiMeglio, Linda A.; Oyetoro, Rebecca; Soni, Priya Y.; Adams, Janey; Westen, Sarah; Driscoll, Kimberly A.; Albanese-O’Neill, Anastasia; Pediatrics, School of MedicineBackground Little is known about the coronavirus disease 2019 (COVID-19) pandemic’s psychological effects on caregivers of children with type 1 diabetes. Objective This study aimed to investigate the experience of caregivers of youth with type 1 diabetes during the COVID-19 pandemic. Methods A 49-item questionnaire using a 5-point Likert scale and open-response questions was distributed via e-mail and type 1 diabetes–related social media platforms from 4 May to 22 June 2020. Quantitative data were analyzed using SPSS v.25 statistical software. Descriptive statistics were used. Relationships were compared using Pearson correlation. Qualitative data were coded and categorized. Results A total of 272 caregivers participated (mean ± SD respondent age 42.1 ± 7.8 years; 94.5% females; 81.3% with college degree or higher; 52.6% with annual income >$99,000; 80.1% with private insurance). The mean ± SD age of caregivers’ children with type 1 diabetes was 11.0 ± 4.1 years, and their mean ± SD diabetes duration was 4.2 ± 3.5 years. Participants reported being diagnosed with or knowing someone with COVID-19 (24.6%), increased stress (71.9%), job loss (10.3%), and financial difficulty (26.8%) as a result of the pandemic. General self-efficacy scores were high (mean ± SD 16.2 ± 2.6, range 8–20) and significantly correlated with COVID-19–related self-efficacy (mean ± SD 12.6 ± 2.1; R = 0.394, P <0.001) and type 1 diabetes self-efficacy during COVID-19 (mean ± SD 17.1 ± 2.5; R = 0.421, P <0.001). Conclusion Despite reporting high overall self-efficacy, caregivers of children with type 1 diabetes reported greater overall stress and challenges during the pandemic. Health care providers should be prepared to provide families with specific social and mental health support.Item Educators’ and caregivers’ perceptions on the implementation of social narratives with individuals with autisim spectrum disorder(2016-09) Jordan, Kristi Ann; Crabtree, Jeffrey L.; Solas Allen, Martina; Fisher, ThomasSocial narratives are considered by the National Professional Development Center on Autism Spectrum Disorders (NPDC) to be effective in reducing challenging behaviors, improving expected behaviors, and preparing for change. This study is addressing the gap in literature about educators’ and caregivers’ perceptions of the implementation of and the differences in implementation of social narratives with individuals with Autism Spectrum Disorder (ASD).Item End of life decision-making, policy and the criminal justice system: untrained carers assuming responsibility [UCARes] and their uncertain legal liabilities(2006-05) Biggs, Hazel; Mackenzie, RobinDiscusses the legal issues faced by caregivers of the terminally ill.