IU Indianapolis ScholarWorks :: Browsing by Subject "Caregivers"

Browsing by Subject "Caregivers"

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Apathy and Anxiety are Related to Poor Function in Persons with Early-Onset Alzheimer’s Disease
(Oxford University Press, 2022) Crouch, Adele; Massimo, Lauren; School of Nursing
Neuropsychiatric symptoms are prevalent in persons with early-onset Alzheimer’s disease (EOAD) and may contribute to the inability to perform instrumental activities of daily living. We examined associations between frequently observed symptoms in persons with EOAD: apathy, anxiety, depression, and patient function. Caregivers of 94 persons with EOAD completed questionnaires including the Neuropsychiatric Inventory and the Functional Activities Questionnaire. Regression analyses were performed for each neuropsychiatric symptom as a predictor with covariates (age, sex disease duration) and our outcome was patient function. We then performed multivariate analysis with the significant predictors. We observed that apathy explained 20.51% [F(4,68)=5.65, adjusted R2=0.2051; p<0.001], anxiety explained 6.63% [F(4,70)=2.31, adjusted R2=0.0663 p<0.05], and depression was not a significant predictor of patient function. In a multivariate model, apathy and anxiety explained 21.03% [F(5,67)=4.83, adjusted R2=0.2103; p<0.001] of the variance in patient function. These results suggest apathy and anxiety contribute to diminished ability to complete functional activities.
Barriers and facilitators to treatment participation by adolescents in a community mental health clinic
(2013-05-17) Oruche, Ukamaka M.; Downs, Sarah M.; Holloway, Evan D.; Burke Draucker, Claire; Aalsma, Matthew C.
An estimated 40–60% of children in mental health treatment drop out before completing their treatment plans, resulting in increased risk for ongoing clinical symptoms and functional impairment, lower satisfaction with treatment, and other poor outcomes. Research has focused predominately on child, caregiver, and family factors that affect treatment participation in this population and relatively less on organizational factors. Findings are limited by focus on children between 3 and 14 years of age and included only caregivers’ and/or therapists’ perspectives. The purpose of this descriptive qualitative study was to identify organizational factors that influenced participation in treatment, with special attention to factors that contributed to dropout in adolescents. The sample included 12 adolescent–caregiver dyads drawn from two groups in a large public mental health provider database. Analysis of focus group interview data revealed several perceived facilitators and barriers to adolescent participation in treatment and provided several practical suggestions for improving treatment participation. Implications of the findings for psychiatric mental health nurses and other clinicians who provide services to families of adolescents with mental health concerns are discussed.
Barriers to Dental Care in Individuals with Special Healthcare Needs in Qatif, Saudi Arabia: A Caregiver’s Perspective
(Dove Press, 2021-01-22) Alfaraj, Amal; Halawany, Hassan S.; Al-Hinai, Muntasar T.; Al-Badr, Abid H.; Alalshaikh, Marwa; Al-Khalifa, Khalifa S.; Prosthodontics, School of Dentistry
Objective: Access to dental care is a key factor influencing oral health outcomes. Individuals with special healthcare needs are at risk of not having access to dental care services which they need to maintain their oral health. This study assessed the magnitude of this problem and identified barriers responsible for the difficulties in accessing dental care in Qatif, Saudi Arabia, as reported by caregivers of individuals with special healthcare needs. Methods: This cross-sectional study collected data using a self-administered survey questionnaire from caregivers of individuals with special healthcare needs across 11 centers (eight special needs centers and three schools) in Qatif, Eastern Province of Saudi Arabia, between February and April 2019. Results: A total of 186 caregivers participated in the study, 102 (54.8%) of whom reported difficulties in getting access to dental care. The key barriers included lack of time on the part of caregivers (60.8%), unsuitable clinic environment (53.9%), difficulties with transportation (51.9%), medical/health status of the individual with special healthcare needs (51.0%), and geographically distant dental clinics (51.0%). Caregiver demographics (age, gender, and educational level) had no significant influence on the difficulties reported by caregivers in getting access to dental care for individuals with special healthcare needs (p>0.05). Conclusion: A large proportion of caregivers in Qatif, Saudi Arabia, experience difficulties with access to dental care services for individuals with special healthcare needs. The most common barriers are physical accessibility of dental facilities (for individuals with special healthcare needs), affordability, and lack of skills and knowledge of dental care providers.
Beyond caregiving: Navigating life with a developmentally disabled daughter with a severe case of Hidradenitis Suppurativa
(Wiley, 2024-06-04) Myers, Elisha M.; Nassim, Janelle S.; Dermatology, School of Medicine
Caregiver and Juvenile Justice Personnel Perspectives on challenges and importance of caregiver engagement and the potential utility of a peer navigator program in the Juvenile Justice System
(BMC, 2023-08-05) Dir, Allyson L.; Pederson, Casey; Khazvand, Shirin; Schwartz, Katie; Wiehe, Sarah E.; Aalsma, Matthew C.; Psychiatry, School of Medicine
Background: For youth involved in the juvenile justice (JJ) system, caregiver involvement and engagement in the system is crucial for youth development and outcomes of JJ cases; however, there are challenges to establishing positive/productive partnerships between caregivers and JJ representatives. The current project examines perspectives of caregivers and JJ personnel regarding facilitators and barriers to establishing JJ-caregiver partnerships, as well as their perceptions of the use of a caregiver navigator program to support caregivers of system-involved youth. Results are used to inform development of a caregiver navigator program to support caregivers and help them navigate the JJ system. Results: Semi-structured interviews were conducted with caregivers of youth involved in JJ (n = 15, 53% White, 93% female), JJ personnel (n = 7, 100% White, 50% female), and JJ family advisory board members (n = 5, 100% Black, 100% female). Caregivers reported varying experiences across intake/arrest, court, and probation processes. Positive experiences were characterized by effective communication and feeling supported by JJ. Negative experiences related to feeling blamed and punished for their child's system involvement and feeling unsupported. JJ interviews corroborated caregiver sentiments and also illustrated facilitators and barriers to JJ-caregiver partnerships. Both JJ personnel and caregivers endorsed potential benefits of a peer-based caregiver navigator program to provide social, informational, and emotional support. Conclusion: Continued work is needed to improve JJ-caregiver partnerships and use of a peer-based navigator program has the potential to address barriers to caregiver engagement in the JJ system.
Caregiver-Based Interventions to Optimize Medication Safety in Vulnerable Elderly Adults: A Systematic Evidence-Based Review
(Wiley, 2018-11) Wagle, Kamal C.; Skopelja, Elaine N.; Campbell, Noll L.; Medicine, School of Medicine
OBJECTIVES: To study the effect of caregiver-focused interventions to support medication safety in older adults with chronic disease. DESIGN: Systematic review. SETTING: Studies published before January 31, 2017, searched using Ovid Medline, PubMed, EMBASE, Scopus, CINAHL, PsycINFO, and Google Scholar. PARTICIPANTS: Caregivers with or without a care recipient. MEASUREMENTS: Inclusion criteria: interventions focused on caregivers aiming to improve medication safety. Studies not focusing on older adults, not evaluating medication safety, failing to include caregivers, or without a comparison group were excluded. RESULTS: The initial search revealed 1,311 titles. Eight studies met inclusion criteria. The strategies used in randomized trials were a home-based medication review and adherence assessment by a clinical pharmacist (2 home visits 6-8 weeks apart, with pharmacist and physician meeting independently) that found no difference in nonelective hospital admissions (p=.8) but fewer medications (p=.03); a 19-minute educational DVD and an hour-long medication education and training that improved caregiver satisfaction (p<.04); a medication education and adherence intervention (2-3 home visits per care recipient and caregiver dyad over 8 weeks) that found no difference in knowledge, administration, or accessibility of medications (p=.29); and a collaborative case management program (16-month program of assessment, meeting, and monthly follow-up telephone calls) that reduced perceived caregiver burden (p=.03). Quasi-experimental trials included collaborative care transitional coaches, an outpatient collaborative care model, and education and training programs. Of these, educational interventions showed improvements in self-efficacy, confidence, and preparedness. The collaborative care intervention reduced rehospitalizations (p=.04) and improved quality-of-care outcomes. CONCLUSION: Although some interventions improved caregiver medication knowledge and self-efficacy, effects on clinical outcomes and healthcare use were insufficiently studied. Two studies implementing collaborative care models with medication management components showed potential for improvement in quality of clinical care and reductions in healthcare visits and warrant further study with respect to medication safety. J Am Geriatr Soc 66:2128-2135, 2018.
Caring for parents with neurodegenerative disease: a qualitative description
(2013-08) Habermann, Barbara; Hines, Dana; Davis, Linda
PURPOSE/OBJECTIVE: The objective of this study was to explore the positive aspects experienced by adult children in providing care to their parent who has either Parkinson's or Alzheimer's disease. DESIGN:A qualitative descriptive approach was used to analyze audiotaped in-depth semistructured interviews that were conducted with 34 adult children who were primary caregivers as part of a larger randomized clinical trial. SETTING: Individual interviews were conducted by trained research assistants in the caregiver's home. SAMPLE: Thirty-four adult children caregivers who were primary caregivers for their respective 34 parents. Seventy-six percent (n = 26) of the caregivers were caring for a parent with Alzheimer's disease. Twenty-four percent (n = 8) were caring for a parent with Parkinson's disease. Eighty-two percent were adult daughters. Mean age of the caregiver was 52 years, and the mean age of the parent was 81 years. Fifty-three percent of caregivers were white, and 47% were black. DATA ANALYSIS: A conventional content analysis was performed to summarize themes. FINDINGS: Results indicated that most caregivers had positive experiences. Three relationship-centered themes were identified: spending and enjoying time together, appreciating each other and becoming closer, and giving back care. A small number of caregivers (n = 6) could not identify positive experiences. CONCLUSION/IMPLICATIONS: Caregivers who had positive experiences in caregiving expressed fewer feelings of being overwhelmed or distressed by their situations. Further study is needed on caregivers who do not experience positive aspects in caring for a parent, and these caregivers potentially may be a group that warrants further intervention by advanced practice nurses.
Characterizing Burden, Role Strains and Psychological Distress of Husbands of Breast Cancer Patients During Treatment and Beyond
(Wolters Kluwer, 2011) Wagner, Christina D.; Das, Lala Tanmoy; Bigatti, Silvia M.; Storniolo, Anna Maria
Background: Husbands, as the primary providers of support for women with breast cancer, can experience significant burden and role strain, but also perceive positive aspects to the caregiving. Little is known about the specific caregiving tasks husbands perform, for how long, or how burden and positive aspects relate to later psychological distress. Objective: Our primary aim was to better characterize the caregiving responsibilities and role strains of husbands during active cancer treatment and 1 year later. We also evaluated positive aspects during active treatment. Our second aim was to determine which of these predicted psychological distress 1 year later. Methods: Husbands of women undergoing chemotherapy for breast cancer completed a battery of surveys during the time of wives' treatment and again 1 year later. Results: Husbands performed a variety of caregiving tasks for wives during and after breast cancer treatment and also reported benefits associated with caregiving. Breast cancer-related worries were high at both time points. At 1 year after treatment, role strains improved in the social domain but worsened in the domestic domain. Domestic strains during active treatment were the strongest predictor of 1-year distress. Conclusions: Husbands who report persistent domestic role strain are at high risk for continued psychological distress following their wives' breast cancer treatment. Implications for practice: Health care providers should monitor husbands' caregiver burden regularly. Providing couples with resources to reduce domestic role strain (such as social support and communication training) may prevent or alleviate psychological distress in these husbands.
Comparing Crowdsourcing and Friendsourcing: A Social Media-Based Feasibility Study to Support Alzheimer Disease Caregivers
(JMIR Publications, 2017-04-10) Bateman, Daniel Robert; Brady, Erin; Wilkerson, David A.; Yi, Eun-Hye; Karanam, Yamini; Callahan, Christopher M.; Psychiatry, School of Medicine
BACKGROUND: In the United States, over 15 million informal caregivers provide unpaid care to people with Alzheimer disease (AD). Compared with others in their age group, AD caregivers have higher rates of stress, and medical and psychiatric illnesses. Psychosocial interventions improve the health of caregivers. However, constraints of time, distance, and availability inhibit the use of these services. Newer online technologies, such as social media, online groups, friendsourcing, and crowdsourcing, present alternative methods of delivering support. However, limited work has been done in this area with caregivers. OBJECTIVE: The primary aims of this study were to determine (1) the feasibility of innovating peer support group work delivered through social media with friendsourcing, (2) whether the intervention provides an acceptable method for AD caregivers to obtain support, and (3) whether caregiver outcomes were affected by the intervention. A Facebook app provided support to AD caregivers through collecting friendsourced answers to caregiver questions from participants' social networks. The study's secondary aim was to descriptively compare friendsourced answers versus crowdsourced answers. METHODS: We recruited AD caregivers online to participate in a 6-week-long asynchronous, online, closed group on Facebook, where caregivers received support through moderator prompts, group member interactions, and friendsourced answers to caregiver questions. We surveyed and interviewed participants before and after the online group to assess their needs, views on technology, and experience with the intervention. Caregiver questions were pushed automatically to the participants' Facebook News Feed, allowing participants' Facebook friends to see and post answers to the caregiver questions (Friendsourced answers). Of these caregiver questions, 2 were pushed to crowdsource workers through the Amazon Mechanical Turk platform. We descriptively compared characteristics of these crowdsourced answers with the friendsourced answers. RESULTS: In total, 6 AD caregivers completed the initial online survey and semistructured telephone interview. Of these, 4 AD caregivers agreed to participate in the online Facebook closed group activity portion of the study. Friendsourcing and crowdsourcing answers to caregiver questions had similar rates of acceptability as rated by content experts: 90% (27/30) and 100% (45/45), respectively. Rates of emotional support and informational support for both groups of answers appeared to trend with the type of support emphasized in the caregiver question (emotional vs informational support question). Friendsourced answers included more shared experiences (20/30, 67%) than did crowdsourced answers (4/45, 9%). CONCLUSIONS: We found an asynchronous, online, closed group on Facebook to be generally acceptable as a means to deliver support to caregivers of people with AD. This pilot is too small to make judgments on effectiveness; however, results trended toward an improvement in caregivers' self-efficacy, sense of support, and perceived stress, but these results were not statistically significant. Both friendsourced and crowdsourced answers may be an acceptable way to provide informational and emotional support to caregivers of people with AD.
Coping with physical and psychological symptoms: a qualitative study of advanced lung cancer patients and their family caregivers
(Springer-Verlag, 2015-07) Mosher, Catherine E.; Ott, Mary A.; Hanna, Nasser; Jalal, Shadia I.; Champion, Victoria L.; Department of Psychology, School of Science
PURPOSE: Advanced lung cancer patients have high rates of multiple physical and psychological symptoms, and many of their family caregivers experience significant distress. However, little is known about strategies that these patients and their family caregivers employ to cope with physical and psychological symptoms. This study aimed to identify strategies for coping with various physical and psychological symptoms among advanced, symptomatic lung cancer patients and their primary family caregivers. METHODS: Patients identified their primary family caregiver. Individual semi-structured qualitative interviews were conducted with 21 advanced, symptomatic lung cancer patients and primary family caregivers. Thematic analysis of interview data was framed by stress and coping theory. RESULTS: Patients and caregivers reported maintaining a normal routine and turning to family and friends for support with symptom management, which often varied in its effectiveness. Whereas support from health-care professionals and complementary and alternative medicine were viewed favorably, reactions to Internet and in-person support groups were mixed due to the tragic nature of participants' stories. Several cognitive coping strategies were frequently reported (i.e., changing expectations, maintaining positivity, and avoiding illness-related thoughts) as well as religious coping strategies. CONCLUSIONS: Results suggest that advanced lung cancer patients and caregivers may be more receptive to cognitive and religious approaches to symptom management and less receptive to peer support. Interventions should address the perceived effectiveness of support from family and friends.

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