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1.
BMC Med ; 21(1): 247, 2023 07 10.
Article in English | MEDLINE | ID: mdl-37424022

ABSTRACT

BACKGROUND: Providing informal care for a person with Parkinson's disease (PD) can be a demanding process affecting several dimensions of a caregiver's life and potentially causing caregiver burden. Despite the emerging literature on caregiver burden in people with PD, little is known about the inter-relationship between quantitative and qualitative findings. Filling this knowledge gap will provide a more holistic approach to develop and design innovations aiming at reducing or even preventing caregiver burden. This study aimed to characterize the determinants of caregiver burden among informal caregivers of persons with PD, in order to facilitate the development of tailored interventions that reduce caregiver burden. METHODS: We conducted a cross-sectional study in The Netherlands using a sequential mixed methods approach, entailing a quantitative study of 504 persons with PD and their informal caregivers as well as a qualitative study in a representative subsample of 17 informal caregivers. The quantitative study included a standardized questionnaire of caregiver burden (Zarit Burden Inventory) and patient-related (Beck Depression Inventory, State-Trait Anxiety Inventory, Acceptance of Illness Scale, MDS-Unified Parkinson's Disease Rating Scale part II on motor functions in daily life, Self-assessment Parkinson's Disease Disability Score), caregiver-related (Brief Coping Orientation to Problems Experience Inventory, Caregiver Activation Measurement, Multidimensional Scale of Perceived Social Support) and interpersonal determinants (sociodemographic variables including among others gender, age, education, marital status and working status). The qualitative study consisted of semi-structured interviews. Multivariable regression and thematic analysis were used to analyse quantitative and qualitative data, respectively. RESULTS: A total of 337 caregivers were women (66.9%), and the majority of people with PD were men (N = 321, 63.7%). The mean age of persons with PD was 69.9 (standard deviation [SD] 8.1) years, and the mean disease duration was 7.2 (SD 5.2) years. A total of 366 (72.6%) persons with PD had no active employment. The mean age of informal caregivers was 67.5 (SD 9.2) years. Most informal caregivers were female (66.9%), had no active employment (65.9%) and were the spouse of the person with PD (90.7%). The mean Zarit Burden Inventory score was 15.9 (SD 11.7). The quantitative study showed that a lack of active employment of the person affected by PD was associated with a higher caregiver burden. The qualitative study revealed cognitive decline and psychological or emotional deficits of the person with PD as additional patient-related determinants of higher caregiver burden. The following caregiver-related and interpersonal determinants were associated with higher caregiver burden: low social support (quantitative study), concerns about the future (qualitative study), the caregiving-induced requirement of restrictions in everyday life (qualitative study), changes in the relationship with the person with PD (qualitative study) and a problem-focused or avoidant coping style (both studies). Integration of both data strands revealed that qualitative findings expanded quantitative findings by (1) distinguishing between the impact of the relationship with the person with PD and the relationship with others on perceived social support, (2) revealing the impact of non-motor symptoms next to motor symptoms and (3) revealing the following additional factors impacting caregiver burden: concern about the future, perceived restrictions and limitations in performing daily activities due to the disease, and negative feelings and emotional well-being. Qualitative findings were discordant with the quantitative finding demonstrating that problem-focused was associated with a higher caregiver burden. Factor analyses showed three sub-dimensions of the Zarit Burden Inventory: (i) role intensity and resource strain, (2) social restriction and anger and (3) self-criticism. Quantitative analysis showed that avoidant coping was a determinant for all three subscales, whereas problem-solved coping and perceived social support were significant predictors on two subscales, role intensity and resource strain and self-criticism. CONCLUSIONS: The burden experienced by informal caregivers of persons with PD is determined by a complex interplay of patient-related, caregiver-related and interpersonal characteristics. Our study highlights the utility of a mixed-methods approach to unravel the multidimensional burden experienced by informal caregivers of persons with chronic disease. We also offer starting points for the development of a tailored supportive approach for caregivers.


Subject(s)
Caregiver Burden , Caregivers , Cost of Illness , Parkinson Disease , Quality of Life , Aged , Female , Humans , Male , Caregiver Burden/etiology , Caregiver Burden/psychology , Caregiver Burden/therapy , Caregivers/psychology , Cross-Sectional Studies , Parkinson Disease/psychology , Parkinson Disease/therapy , Quality of Life/psychology , Netherlands , Middle Aged , Qualitative Research , Surveys and Questionnaires
2.
Sci Rep ; 11(1): 19321, 2021 09 29.
Article in English | MEDLINE | ID: mdl-34588477

ABSTRACT

Various physical and psychosocial difficulties including anxiety affect cancer patients. Patient surroundings also have psychological effects on caregiving. Assessing the current status of palliative care intervention, specifically examining anxiety and its associated factors, is important to improve palliative care unit (PCU) patient quality of life (QOL). This study retrospectively assessed 199 patients admitted to a PCU during August 2018-June 2019. Data for symptom control, anxiety level, disease insight, and communication level obtained using Support Team Assessment Schedule Japanese version (STAS-J) were evaluated on admission and after 2 weeks. Palliative Prognostic Index (PPI) and laboratory data were collected at admission. Patient anxiety was significantly severer and more frequent in groups with severer functional impairment (p = 0.003) and those requiring symptom control (p = 0.006). Nevertheless, no relation was found between dyspnea and anxiety (p = 0.135). Patients with edema more frequently experienced anxiety (p = 0.068). Patient survival was significantly shorter when family anxiety was higher after 2 weeks (p = 0.021). Symptoms, edema, and disabilities in daily living correlate with patient anxiety. Dyspnea is associated with anxiety, but its emergence might be attributable mainly to physical factors in this population. Family members might sensitize changes reflecting worsened general conditions earlier than the patients.


Subject(s)
Anxiety/diagnosis , Caregiver Burden/diagnosis , Dyspnea/diagnosis , Neoplasms/therapy , Palliative Care , Adolescent , Adult , Aged , Aged, 80 and over , Anxiety/etiology , Anxiety/psychology , Caregiver Burden/etiology , Caregiver Burden/psychology , Caregivers/psychology , Dyspnea/etiology , Dyspnea/psychology , Family/psychology , Female , Humans , Japan/epidemiology , Male , Middle Aged , Neoplasms/complications , Neoplasms/mortality , Neoplasms/psychology , Quality of Life , Retrospective Studies , Young Adult
3.
Rev. cuba. salud pública ; 47(2): e1768, 2021. tab
Article in Spanish | LILACS, CUMED | ID: biblio-1341489

ABSTRACT

Introducción: En Cuba, la prevalencia de las enfermedades demenciales (10,2 por ciento) constituye una realidad a la que se enfrenta hoy día el Sistema Nacional de Salud. La demencia repercute no solo en la persona que la padece, sino en su familia y sobre todo en la salud del cuidador, quien es sometido a cambios físicos y emocionales que comprometen su calidad de vida. Objetivos: Identificar los factores de riesgo de morbilidad física y psicológica en un grupo de cuidadores de adultos mayores con demencia. Métodos: Análisis secundario de la base de datos del estudio Envejecimiento y Alzheimer, un estudio poblacional en personas de 65 años de edad y más, realizado en La Habana y Matanzas, Cuba, en el periodo de 2003 a 2007. Se seleccionaron cuidadores principales de adultos mayores demenciados. Se aplicó una entrevista sociodemográfica y de factores de riesgo, la escala de sobrecarga de Zarit y el cuestionario general de salud. Resultados: El nivel de sobrecarga (OR = 4,88; IC 95 por ciento 2,16-11,02) constituyó un factor de riesgo de morbilidad física y psicológica en los cuidadores, mientras que el alto nivel educacional se comportó como un factor protector (OR= 0,5; CI 95 por ciento 0,36-0,82). Conclusiones: La prestación de cuidados a un enfermo demente conforma una fuente de estrés crónico que puede conllevar a serias consecuencias para la salud del cuidador principal, y en la que diversos factores de riesgo se relacionan con una mayor sobrecarga. Estudiar estos factores de riesgo permite explorar el cuidado en otros contextos e involucrar dimensiones, relaciones y vínculos que se convierten en retos frente al diseño, ejecución y evaluación de intervenciones de apoyo como respuesta a las necesidades identificadas, para afrontar los conflictos, miedos, desafíos que experimentan los cuidadores principales(AU)


Introduction: In Cuba, the prevalence of dementia diseases (10.2 percent) it is a reality the National Health System is facing nowadays. Dementia affects not only the person who suffers from it, but also to the family and especially the health of the caregiver, who undergoes physical and emotional changes that compromise their quality of life. Objectives: Identify the risk factors for physical and psychological morbidity in a group of caregivers of older adults with dementia. Methods: Secondary analysis of the database of the study named Aging and Alzheimer: a population study in people aged 65 and over conducted in Havana and Matanzas provinces, Cuba, in the period from 2003 to 2007. Primary caregivers of older adults with dementia were selected. A sociodemographic and risk factor interview, Zarit's scale of overload and the overall health questionnaire were applied. Results: The level of overload (OR-4.88; 95 percent CI 2.16-11.02) was a risk factor for physical and psychological morbidity in caregivers, while the high level of education was a protective factor (OR-0.5; CI 95 percent 0.36-0.82). Conclusions: Providing care to a demented patient is a source of chronic stress that can lead to serious health consequences for the main caregiver and in which various risk factors are associated with an increased overload. Studying these risk factors allow to explore care in other contexts and to involve dimensions, relationships and links that become challenges in the face of the design, execution and assessment of support interventions in response to identified needs, to address the conflicts, fears, and challenges experienced by key caregivers(AU)


Subject(s)
Humans , Male , Aged , Aged, 80 and over , Risk Factors , Morbidity , Caregivers , Dementia , Caregiver Burden/etiology
4.
Clin Interv Aging ; 16: 291-299, 2021.
Article in English | MEDLINE | ID: mdl-33628016

ABSTRACT

PURPOSE: Older people, especially women, have the highest known prevalence of urinary incontinence (UI) of any other age-group. Continual care provision for elderly incontinent females is an incredibly arduous process, yet only very few studies have investigated the issue. Aim of the study was to evaluate the impact of mirabegron's treatment on the degree of burden experienced by caregivers of elderly female patients with UI. PATIENTS AND METHODS: A hundred and eighty-six caregivers of older females with mixed or urgency UI besides various conditions (strokes, post-operative recovery after major surgery, etc.) were included in the study. Group A comprised 91 patients that did not want to receive any treatment for UI. Group B consisted of 95 elderly females treated for UI with mirabegron 50 mg/daily for three months. All caregivers completed the Zarit Burden Scale (ZBS) questionnaire at the outset and after the three months. All patients completed a bladder diary at the beginning and at the end of the observation/medication period. RESULTS: Patients receiving mirabegron presented a statistically significant improvement in UI parameters. Their caregivers showed a statistically significant decrease in the ZBS total score as well as separate domains. CONCLUSION: This pilot study confirms that mirabegron administration can improve the quality of life of older females suffering from UI while substantially relieving caregiver burden. Recognizing the physical and emotional reactions of caregivers may help health providers deliver better support and resources to meet the needs of caregivers and patients alike.


Subject(s)
Acetanilides/therapeutic use , Caregiver Burden , Quality of Life , Thiazoles/therapeutic use , Urinary Incontinence , Aged , Caregiver Burden/etiology , Caregiver Burden/prevention & control , Caregivers/psychology , Female , Humans , Outcome Assessment, Health Care , Pilot Projects , Surveys and Questionnaires , Urinary Incontinence/drug therapy , Urinary Incontinence/etiology , Urinary Incontinence/psychology , Urological Agents/therapeutic use
5.
J Gerontol B Psychol Sci Soc Sci ; 76(10): 2098-2111, 2021 11 15.
Article in English | MEDLINE | ID: mdl-33598710

ABSTRACT

OBJECTIVES: To examine the association between caregiver (CG) depression and increase in elder mistreatment and to investigate whether change in care recipient (CR) neuropsychiatric symptoms (NPS) and change in CG-perceived burden influence this association. METHODS: Using 2-year longitudinal data, we analyzed a consecutive sample of 800 Chinese primary family CGs and their CRs with mild cognitive impairment or mild-to-moderate dementia recruited from the geriatric and neurological departments of 3 Grade-A hospitals in the People's Republic of China. Participatory dyads were assessed between September 2015 and February 2016 and followed for 2 years. RESULTS: CG depression at baseline was associated with a sharper increase in psychological abuse and neglect. For CRs with increased NPS, having a depressed CG predicted a higher level of psychological abuse than for those CRs without NPS. For CGs with decreased burden, the level of depression was associated with a slower increase in neglect than for CGs who remained low burden. DISCUSSION: This study showed the differential impact of CG depression on the increase in elder mistreatment depending on the change in CR NPS and CG-perceived burden. The present findings provide valuable insights into the design of a systematic and integrative intervention protocol for elder mistreatment that simultaneously focuses on treating CG depression and perceived burden and CR NPS.


Subject(s)
Caregiver Burden , Caregivers/psychology , Cognitive Dysfunction , Dementia , Depression , Elder Abuse , Aged , Caregiver Burden/diagnosis , Caregiver Burden/etiology , Caregiver Burden/psychology , China/epidemiology , Cognitive Dysfunction/epidemiology , Cognitive Dysfunction/psychology , Dementia/epidemiology , Dementia/psychology , Depression/diagnosis , Depression/etiology , Depression/psychology , Elder Abuse/prevention & control , Elder Abuse/psychology , Emotional Abuse/prevention & control , Female , Humans , Male , Needs Assessment , Psychopathology , Psychosocial Intervention/methods , Risk Factors , Self Concept
7.
Dig Dis Sci ; 66(9): 2942-2955, 2021 09.
Article in English | MEDLINE | ID: mdl-32964286

ABSTRACT

BACKGROUND: Patients with end-stage liver disease (ESLD) experience frequent readmissions; however, studies focused on patients' and caregivers' perceptions of their transitional care experiences to identify root causes of burdensome transitions of care are lacking. AIM: To explore the transitional care experiences of patients with ESLD and their caregivers in order to identify their supportive care needs. METHODS: We conducted interviews with 15 patients with ESLD and 14 informal caregivers. We used semi-structured interview guides to explore their experiences since the diagnosis of ESLD including their care transitions. Two raters coded interviews independently (κ = 0.95) using template analysis. RESULTS: Participants reported feeling unprepared to manage their informational, psychosocial, and practical care needs as they transitioned from hospital to home after the diagnosis of ESLD. Delay in the timely receipt of supportive care services addressing these care needs resulted in hospital readmissions, emotional distress, caregiver burnout, reduced work capacity, and financial hardship. Participants shared the following resources that they perceived would improve their quality of care: (1) discharge checklist, (2) online resources, (3) mental health support, (4) caregiver support and training, and (5) financial navigation. CONCLUSION: Transitional care models that attend to the informational, psychosocial, and practical domains of care are needed to better support patients with ESLD and their caregivers at the time of diagnosis and beyond. Without attending to the multidimensional care needs of newly diagnosed patients with ESLD and their caregivers, they are at risk of burdensome transitions of care, high healthcare utilization, and poor health-related quality of life.


Subject(s)
Caregiver Burden , End Stage Liver Disease , Information Literacy , Patient Readmission , Psychiatric Rehabilitation , Quality Improvement/organization & administration , Transitional Care , Caregiver Burden/etiology , Caregiver Burden/prevention & control , Caregiver Burden/psychology , Caregivers/psychology , Continuity of Patient Care/organization & administration , Continuity of Patient Care/standards , Efficiency , End Stage Liver Disease/diagnosis , End Stage Liver Disease/epidemiology , End Stage Liver Disease/psychology , End Stage Liver Disease/therapy , Female , Financial Stress , Humans , Male , Medical Overuse/prevention & control , Middle Aged , Needs Assessment , Psychiatric Rehabilitation/methods , Psychiatric Rehabilitation/standards , Transitional Care/organization & administration , Transitional Care/standards , United States/epidemiology
9.
J Appl Gerontol ; 40(3): 235-243, 2021 03.
Article in English | MEDLINE | ID: mdl-33143545

ABSTRACT

To understand how the COVID-19 pandemic has affected caregivers, we assessed its perceived impact on caregiving through a new measure: the Caregiver COVID-19 Limitations Scale (CCLS-9), in Spanish and English. We also compared levels of caregiver self-efficacy and burden pre-COVID-19 and early in the pandemic. We administered surveys via internet to a convenience sample of caregivers in January 2020 (pre-pandemic, n = 221) and in April-June 2020 (English, n = 177 and Spanish samples, n = 144) to assess caregiver self-efficacy, depression, pain, and stress. We used the early pandemic surveys to explore the validity of the CCLS-9. The pre-COVID-19 survey and the April English surveys were compared to determine how the COVID-19 pandemic affected caregivers. The CCLS-9 had strong construct and divergent validity in both languages. Compared to pre-COVID-19, caregiver stress (p = .002) and pain (p = .009) were significantly greater early in COVID-19, providing evidence of its validity. COVID-19 added to caregiver stress and pain.


Subject(s)
COVID-19/psychology , Caregiver Burden/etiology , Caregivers/psychology , Pain/etiology , Self Efficacy , Adolescent , Adult , Aged , Aged, 80 and over , Cross-Cultural Comparison , Female , Humans , Internationality , Language , Male , Middle Aged , Surveys and Questionnaires , Young Adult
10.
BMC Palliat Care ; 19(1): 186, 2020 Dec 08.
Article in English | MEDLINE | ID: mdl-33292214

ABSTRACT

BACKGROUND: Informal caregivers (IC) are often overshadowed by the attention required by the terminally ill. This study aims to reveal the estimated proportion of caregiver burden, psychological manifestations and factors associated with caregiver burden among IC in the largest specialized Palliative Care Unit (PCU) in Malaysia. METHODS: This was a cross-sectional study involving IC attending a PCU. Caregiver burden and psychological manifestations were measured using previously translated and validated Zarit Burden Interview and DASS-21 questionnaires respectively. Two hundred forty-nine samples were selected for analysis. RESULT: The mean ZBI score was 23.33 ± 13.7. About half of the population 118(47.4%) was found to experienced caregiver burden whereby majority have mild to moderate burden 90(36.1%). The most common psychological manifestation among IC is anxiety 74(29.7%) followed by depression 51(20.4%) and stress 46(18.5%). Multiple logistic regression demonstrated that women who are IC to patients with non-malignancy were less likely to experience caregiver burden. IC who were highly educated and spent more than 14 h per day caregiving were at least twice likely to experience caregiver burden. Finally, those with symptoms of depression and anxiety were three times more likely to suffer from caregiver burden. CONCLUSION: Caregiver burden among IC to palliative patients is prevalent in this population. IC who are men, educated, caregiving for patients with malignancy, long hours of caregiving and have symptoms of depression and anxiety are at risk of developing caregiver burden. Targeted screening should be implemented and IC well-being should be given more emphasis in local policies.


Subject(s)
Caregiver Burden/psychology , Palliative Care/methods , Patient Care/adverse effects , Adaptation, Psychological , Adult , Aged , Caregiver Burden/etiology , Cross-Sectional Studies , Female , Humans , Malaysia , Male , Middle Aged , Palliative Care/psychology , Palliative Care/standards , Patient Care/methods , Patient Care/psychology , Patients' Rooms , Surveys and Questionnaires
11.
J Cardiovasc Nurs ; 35(6): E70-E76, 2020.
Article in English | MEDLINE | ID: mdl-32976181

ABSTRACT

BACKGROUND: Psychometric properties of the 38-item version of the Dutch Objective Burden Inventory (DOBI) have been evaluated primarily in older female caregivers, with no published studies that vary by a different gender and age distribution. OBJECTIVE: The aim of this study was to test the construct validity and reliability of the DOBI in caregivers of individuals with heart failure from the United States and other countries. METHODS: This secondary analysis from a cross-sectional study used an online survey. Factorial validity was tested with confirmatory factor analysis, item performance was examined with ordinal item response analysis, and convergent validity was tested correlating DOBI subscale scores with Bakas Caregiving Outcomes Scale scores. Internal consistency reliability was assessed with Cronbach α. RESULTS: Item response analysis removed 14 items. Confirmatory factor analysis retained the original 4-factor solution. Original and reduced instruments demonstrated good internal consistency. Validity was supported by meaningful associations with the Bakas Caregiving Outcomes Scale. CONCLUSIONS: Both the original 38-item DOBI and the reduced 24-item DOBI had support for their construct validity and internal consistency. The 24-item DOBI may be a useful alternative to the 38-item version, because it maintains psychometric properties of the original instrument while decreasing data collection burden. However, more research is needed to assess whether the shorter version is useful in assessing objective caregiving burden.


Subject(s)
Caregiver Burden/diagnosis , Caregiver Burden/psychology , Caregivers/psychology , Heart Failure/therapy , Adult , Canada , Caregiver Burden/etiology , Cross-Sectional Studies , Emotions , Female , Heart Failure/psychology , Humans , Male , Middle Aged , Motivation , Netherlands , Psychometrics , Reproducibility of Results , Self Concept , Social Support , Surveys and Questionnaires , United Kingdom , United States
12.
J Int Med Res ; 48(6): 300060520930156, 2020 Jun.
Article in English | MEDLINE | ID: mdl-32567965

ABSTRACT

OBJECTIVES: Caregiver burden in neurologic Wilson disease (NWD) has received little attention. We investigated predictors of caregiver burden in Chinese NWD patients. METHODS: Participants in this retrospective study were NWD patients admitted to The First Affiliated Hospital of Anhui University of Traditional Chinese Medicine from 1 August to 31 December 2019. Sociodemographic information was recorded for caregivers and NWD patients. Caregiver burden was evaluated using the Caregiver Burden Inventory (CBI). Cognitive impairment, functional problems, depression and anxiety were evaluated by professional interviewers. Path analysis was used to evaluate predictors of CBI scores. RESULTS: Sixty NWD patients were enrolled (mean age: 21.35 ± 4.89 years; mean NWD duration: 7.85 ± 3.11 years). The mean CBI score was 52.00 ± 17.16. Care duration had a significant direct effect on CBI score after controlling for confounders (r = 0.493). Cognitive impairment (r = -0.426), functional problems (r = 0.581), depression (r = 0.349) and anxiety (r = 0.317) had significant indirect effects on CBI score. CONCLUSION: Caregivers of NWD patients may experience a medium level of caregiver burden. NWD duration, cognitive impairment, functional problems, depression and anxiety in NWD patients may be useful predictors of caregiver burden.


Subject(s)
Caregiver Burden/psychology , Caregivers/psychology , Hepatolenticular Degeneration/psychology , Adolescent , Adult , Aged , Anxiety/psychology , Asian People/psychology , Caregiver Burden/etiology , China/epidemiology , Cost of Illness , Depression/psychology , Female , Humans , Male , Middle Aged , Psychiatric Status Rating Scales , Retrospective Studies , Young Adult
14.
J Ren Care ; 46(4): 222-232, 2020 Dec.
Article in English | MEDLINE | ID: mdl-32077629

ABSTRACT

BACKGROUND: Most elderly people undergoing peritoneal dialysis (PD) treatment have a high incidence of frailty, cognitive impairment and emotional disturbance leading to a significant impact on families. The burden experienced by the family caregivers could affect their physical and emotion health. The objective of this study was to examine the level of burden on family caregivers of elderly adults receiving PD and to identify any contributing factors. MATERIALS AND METHODS: This was a cross-sectional study employing convenience sampling. Patient-caregiver dyads were recruited from the outpatient clinic of a university hospital in China in 2019. Caregivers provided information on their perceived burden and health-related quality of life. The elderly patients reported their functional dependence and depressive symptoms in the same interview. Linear regression analyses were used to determine the factors contributing to caregivers' burden. RESULTS: Sixty patient-caregiver dyads were recruited. The patients had a mean age of 70.7 ± 7.4 years. The caregivers reported moderate levels of burden having ZBI score of 30.5 ± 15.9. Multivariate analyses showed that being female, perceiving one's financial status as insufficient, a low level of social support for the caregiver, depressive symptoms in the patients and disability in carrying out the instrumental activities of daily life were statistically significant predictors of caregiver burden (adjusted R2 = 0.46, p < 0.001). CONCLUSION: Elderly adults receiving PD who experience physical dependence and depressive symptoms are a burden for caregivers. In response to this challenge, interventions designed with the goal of supporting the emotional and mental wellbeing of caregivers are warranted.


Subject(s)
Caregiver Burden/etiology , Caregivers/psychology , Peritoneal Dialysis/psychology , Social Support , Aged , Aged, 80 and over , Caregiver Burden/psychology , China , Cross-Sectional Studies , Female , Geriatrics/methods , Humans , Male , Peritoneal Dialysis/methods , Quality of Life/psychology , Surveys and Questionnaires
15.
Res Dev Disabil ; 98: 103574, 2020 Mar.
Article in English | MEDLINE | ID: mdl-31982827

ABSTRACT

BACKGROUND: Food selectivity, characterized by food refusal, limited food repertoire, or preference for certain types of foods, is common among children with ASD. METHOD: In this study, researchers examined the effects of a response shaping procedure using a large rotating food set and a small constant food set on food acceptance for two boys with ASD. The small set consisted of three foods that were presented during every session; the large set consisted of 15 foods, of which three were presented during each session, in randomly ordered sets. Researchers measured the percentage of correct behaviors and the cumulative number of foods with which participants interacted. Two concurrently operating multiple baseline across behaviors designs were used to assess whether the shaping procedure resulted in increased correct responding compared to baseline conditions, and whether the intervention was differentially effective with large versus small food sets. RESULTS: The procedures were similar in efficiency for one participant, although he ate many more foods in the large set condition. For the other participant, shaping was successful at increasing some acceptance behaviors (e.g., putting food in his mouth) but only the small set resulted in eating a new food. CONCLUSIONS: Practitioners should consider use of less restrictive or intrusive interventions to promote food acceptance and the use of larger sets of foods, modified to include fewer foods in the case of poor response to intervention.


Subject(s)
Autistic Disorder/psychology , Behavior Control , Child Behavior/psychology , Family Health , Food Fussiness , Food Preferences/psychology , Behavior Control/methods , Behavior Control/psychology , Caregiver Burden/etiology , Caregiver Burden/prevention & control , Child , Child, Preschool , Humans , Male
16.
Rehabil Nurs ; 45(3): 158-165, 2020.
Article in English | MEDLINE | ID: mdl-30272623

ABSTRACT

PURPOSE: This study aimed to measure treatment burden in adults diagnosed with multiple chronic conditions transitioning from a skilled nursing facility to home. DESIGN: Prospective, two-time point, cohort design utilizing convenience sampling from one skilled nursing facility in Northeast, Ohio. METHODS: Seventy-four men and women participated answering self-report questions measuring treatment burden at two time points: prior to discharge and 30 days after discharge. RESULTS: t-test analysis determined treatment burden was not statistically different between time points (p > .05). Multivariate analysis explained 23% of treatment burden's variance, with the severity of multiple chronic conditions and the presence of a caregiver predicting treatment burden (p < .05). CONCLUSION: Findings were contrary to our hypothesis of this population being at risk for high treatment burden. CLINICAL RELEVANCE: Moderate, fluctuating levels of treatment burden suggest that it is possible to estimate demands of treatment prior to discharge from the skilled nursing facility to better inform discharge planning.


Subject(s)
Caregiver Burden/etiology , Patient Acuity , Aged , Aged, 80 and over , Caregiver Burden/psychology , Cohort Studies , Female , Humans , Male , Pilot Projects , Prospective Studies , Psychometrics/instrumentation , Psychometrics/methods , Risk Factors , Skilled Nursing Facilities/organization & administration , Skilled Nursing Facilities/standards , Skilled Nursing Facilities/statistics & numerical data , Surveys and Questionnaires
17.
Rehabil Nurs ; 45(3): 166-177, 2020.
Article in English | MEDLINE | ID: mdl-30418319

ABSTRACT

PURPOSE: The purpose of this study was to design a mobile-friendly, Internet-based website, modeled on previously described websites for Alzheimer caregivers, to equip stroke caregivers and potentially reduce caregiver burden. DESIGN: A mixed-methods study was performed to design and test the usability of the Stroke Caregiver Support System (SCSS). METHODS: An iterative, user-centered design approach was employed in three phases: (I) Focus Groups, (II) Structured Interviews, and (III) Usability Testing. Phase I and Phase II provided information for the development of the SCSS website, whereas Phase III helped in gathering data regarding the usability and efficacy of the newly implemented SCSS website. FINDINGS: Qualitative data on caregiving and the content and design of the SCSS were obtained from focus groups and interviews. In the usability test, the nine caregivers who completed Phase III (78% women, mean age = 46, SD = 17) exhibited a high level of burden and depressive symptoms (median [Q1, Q3] Zarit burden score = 18 [16, 23], Center of Epidemiologic Studies-Depression Scale = 15 [8, 17]). Caregivers conveyed the usability of the SCSS but also expressed several needed improvements. CONCLUSIONS: Participants reported the value of the SCSS, but further refinements are needed to maximize its usability and potential efficacy. CLINICAL RELEVANCE: The SCSS has potential to reduce caregiver burden in stroke.


Subject(s)
Caregiver Burden/therapy , Caregivers/psychology , Program Development/standards , Aged , Caregiver Burden/etiology , Caregiver Burden/psychology , Caregivers/statistics & numerical data , Female , Florida , Humans , Internet , Interviews as Topic/methods , Male , Middle Aged , Program Development/methods , Program Development/statistics & numerical data , Qualitative Research , Stroke Rehabilitation/adverse effects , Stroke Rehabilitation/methods , Stroke Rehabilitation/psychology , User-Centered Design
18.
J Aging Health ; 32(7-8): 698-707, 2020.
Article in English | MEDLINE | ID: mdl-31096825

ABSTRACT

Objective: To determine whether employed family caregiver reports of caregiving to work conflict (CWC) are associated with emotional, physical, and financial strain, and whether organizational factors, including supervisor disclosure and caregiver-friendly workplace policies, attenuate these effects. Method: We examined 369 full-time employed caregivers of adults aged 50 years and above from the 2015 AARP and National Alliance for Caregiving population-based study, Caregiving in the United States, using ordinary least squares hierarchical regression and moderation analyses. Results: Regression analyses showed that caregiver reports of more CWC, in addition to disclosure of caregiving, were associated with greater emotional, physical, and financial strain after controlling for demographics and caregiving stressors, and workplace policies did not attenuate strain. Neither disclosure nor policies moderated the impact of CWC on caregiver strain. Discussion: Results suggest the importance of workplace strain in the caregiving stress process and suggest that disclosing caregiving responsibilities to supervisors should be closely examined.


Subject(s)
Caregiver Burden , Caregivers , Disclosure , Stress, Psychological/psychology , Workplace , Aged , Caregiver Burden/etiology , Caregiver Burden/prevention & control , Caregiver Burden/psychology , Caregivers/psychology , Caregivers/statistics & numerical data , Emotions , Employment/methods , Employment/psychology , Female , Humans , Male , Middle Aged , United States , Workplace/psychology , Workplace/standards
19.
West J Nurs Res ; 42(5): 365-372, 2020 05.
Article in English | MEDLINE | ID: mdl-31267839

ABSTRACT

Most dementia care is provided at home by family members. This caregiving places an additional burden on the family members, which can negatively impact their physical and psychological well-being. The caregivers' burden can also contribute to behavioral problems in the care-recipients. The purpose of this study was to examine the mediating/moderating effects of positive thinking (PT) on the relationship between caregivers' burden (embarrassment/anger, patient's dependency, and self-criticism) and their care-recipients' behavioral problems (memory, depression, and disruption) in a sample of 100 dementia caregivers. Results indicated that caregivers' embarrassment, self-criticism, and perception of patient dependency predicts depression in care-recipients, and these relationships are moderated by PT. Results also indicated that as PT increases, the relationship between embarrassment and disruption goes down as well as does the relationship between self-criticism and depression. The study provided direction for the development of a PT training intervention to help caregivers to combat their burden.


Subject(s)
Caregiver Burden/psychology , Dementia/complications , Problem Behavior/psychology , Adaptation, Psychological , Adolescent , Adult , Aged , Aged, 80 and over , Caregiver Burden/etiology , Caregivers/psychology , Correlation of Data , Cross-Sectional Studies , Dementia/psychology , Dementia/therapy , Female , Humans , Male , Middle Aged , Psychometrics/instrumentation , Psychometrics/methods , Stress, Psychological/etiology , Stress, Psychological/psychology , Surveys and Questionnaires
20.
Palliat Support Care ; 18(4): 405-412, 2020 08.
Article in English | MEDLINE | ID: mdl-31727187

ABSTRACT

OBJECTIVE: The present study examined the extent to which social support (SS) availability and satisfaction could predict the extent of caregiver burden (CB) among mothers of children with Acute Lymphocytic Leukemia (ALL). METHOD: The study was a cross-sectional, descriptive-correlative study. It was conducted on a sample of 117 mothers whose children were undergoing treatment in a public hospital in Bam, Iran. The Norbeck Social Support Scale and the Caregiver Burden Scale were used to measuring study variables. The data were analyzed using Pearson's correlations, t-tests, ANOVAs, and linear regressions. RESULTS: Significant correlations were observed between CB and SS availability (r = -0.499, p < 0.001), SS satisfaction (r = -0.543, p < 0.001), the age of the child with cancer (r = -0.22, p = 0.01), and duration of treatment (r = 0.336, p < 0.001). Married mothers experienced less CB than those that were widowed or divorced. Within the regression equation, SS satisfaction, SS availability, marital status, and duration of treatment were the predictors of CB. SIGNIFICANCE OF RESULTS: Based on the results of the current study, mothers who have less SS, especially those who are single mothers, with younger children, and who have taken care of their child for an extended duration should be given special attention. Furthermore, it appears that there are distinct cultural variations amongst Iranian mothers which suggest that culture may impact upon SS availability. Results also suggest a need for interventions that enhance nurses' ability to provide support to caregivers and the broader family unit as a whole. Nurses in cancer care need to have psychological competencies to help family members of cancer patients especially mothers and more so those that are single mothers. As integral members of the patient care experience, nurses may be uniquely positioned to provide this needed psychosocial support.


Subject(s)
Caregiver Burden/etiology , Mother-Child Relations , Mothers/psychology , Precursor Cell Lymphoblastic Leukemia-Lymphoma/complications , Adaptation, Psychological , Adult , Analysis of Variance , Caregiver Burden/psychology , Child , Child, Preschool , Cross-Sectional Studies , Female , Humans , Iran , Male , Mothers/statistics & numerical data , Precursor Cell Lymphoblastic Leukemia-Lymphoma/psychology , Psychometrics/instrumentation , Psychometrics/methods , Social Support , Surveys and Questionnaires
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