Development and validation of the Caregiver Guilt Questionnaire

2010 ◽  
Vol 22 (4) ◽  
pp. 650-660 ◽  
Author(s):  
Andrés Losada ◽  
María Márquez-González ◽  
Cecilia Peñacoba ◽  
Rosa Romero-Moreno
Keyword(s):  
Behavioral Problems ◽  
Family Care ◽  
Research Literature ◽  
Care Recipient ◽  
Outcome Variable ◽  
Caregiver Distress ◽  
Negative Consequences ◽  
Dementia Caregivers ◽  
Five Factors ◽  
Frail Elderly People

ABSTRACTBackground: Family care of frail elderly people has been linked to significant negative consequences for caregivers' mental health. Although outcome variables such as burden and depression have been widely analyzed in this population, guilt, an emotion frequently observed in caregivers, has not received sufficient attention in the research literature.Methods: Face-to-face interviews were carried out with 288 dementia caregivers. Guilt was measured using the Caregiver Guilt Questionnaire (CGQ).Results: Using principal components analysis, 22 items were retained and five factors were obtained which explained 59.25% of the variance. These factors were labeled: guilt about doing wrong by the care recipient, guilt about not rising to the occasion as caregivers, guilt about self-care, guilt about neglecting other relatives, and guilt about having negative feelings towards other people. Acceptable reliability indexes were found, and significant associations between the CGQ and its factors and the Zarit Burden Interview guilt factor were also found. Caregivers with higher scores on the CGQ also scored higher in depression, anxiety, frequency and appraisal of behavioral problems. Negative associations between the CGQ and its factors and frequency of/and satisfaction with leisure and social support were also found. Being female and caring for a parent were associated with higher scores on the CGQ.Conclusions: Feelings of guilt are significantly related to caregiver distress. The CGQ may be a useful measure for acknowledging feelings of guilt in caregivers; moreover, it can be used as an outcome variable for psychoeducational interventions aimed at reducing caregiver distress.

scholarly journals Informal Female Caregivers of Older Adults with Dementia in Taiwan

2004 ◽  
Vol 2 (3) ◽  
pp. 53-66 ◽  
Author(s):  
Chiung-Yu Huang
Keyword(s):  
Older Adults ◽  
Data Analysis ◽  
Behavioral Problems ◽  
Pearson Correlation ◽  
Family Care ◽  
Mediating Effect ◽  
Negative Consequences ◽  
Care Givers ◽  
Care Giving ◽  
The Relationship

Family care givers providing a major portion of care giving often experience stress related to the negative consequences for their health. Female care givers often more heavily involved care giving activities than males. Care givers’ gender studies have seldom conducted in Taiwan. The purpose of this study was to explore the relationship of demographic factors and coping on health of female care givers of older adults with dementia in Taiwan. In addition, whether coping mediated or moderated the relationship between stress and care giver’s health was also examined. Lazarus and Folkman’s Stress model guided this study. Using a secondary data analysis method, this study examined data collected from the family care givers of older adults with dementia (2002). One hundred and three female care givers were analyzed by applying Pearson correlation, simple and multiple regression analysis. The findings showed care givers who are younger, more income, and with helpers had better health. Care givers who had less income, without helpers, and caring for care recipients with more behavioral problems had more depressive symptoms. In addition, mediating effect of avoidance coping was supported in this study. The data analysis from this study will provide a basis for nurses to develop interventions that minimize the negative impacts on female care givers.

scholarly journals The Breaking Point: Family Dementia Caregivers’ Recognition of the Need to Intervene

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-153
Author(s):  
Candace Harrington ◽  
Cheryl Dean-Witt ◽  
Frances Hardin-Fanning
Keyword(s):  
Early Recognition ◽  
Family Care ◽  
Role Identity ◽  
Breaking Point ◽  
Care Recipient ◽  
Life Transition ◽  
Structured Interviews ◽  
Dementia Caregivers ◽  
Rural Agriculture ◽  
Dementia Caregiver

Abstract Family dementia caregivers are an under-recognized and valuable geriatric workforce whose services have broad implications for health care systems. Family dementia caregivers may experience uncertainty, loss of role identity, involuntary role assumption, or undesirable life transitions. Subsequent unintentional mistreatment or abuse of their family care recipient may occur. Approximately 50% of caregivers admit to some form of mistreatment of their loved one who lives with dementia. Using Selder’s (1989) life transition theory, this qualitative study explored family members’ life transition process toward their new role identities as family dementia caregivers to better understand the personal and historical contexts of caregiving. Semi-structured interviews were conducted with 10 participants to answer the questions: How does one acquire the role of primary family dementia caregiver?” and “How do personal and historical contexts inform the family dementia caregiver role?” Richness of data drove our sample size. Epistemological integrity ensured trustworthiness and rigor. A modification of Colaizzi’s (1978) analytic method was used for interpretative phenomenological analysis. The emergent themes uncovered by participants’ statements included: “It’s my turn”, “the breaking point”, and “a fine line” with the subtheme “balancing dignity and safety”. Participants described their introspective journeys toward a changed reality as family dementia caregivers. Our findings suggested the need for early recognition and vigilance to prevent the exploitation and mistreatment of those with dementia. Rural agriculture-based family caregivers in our study described unique and challenging characteristics. Further research is needed to explore the implications of these contextual nuances for rural agriculture-based family dementia caregivers.

scholarly journals Validation of the Caregiver Guilt Questionnaire (CGQ) in a sample of British dementia caregivers

2013 ◽  
Vol 25 (12) ◽  
pp. 2001-2010 ◽  
Author(s):  
Louise Roach ◽  
Ken Laidlaw ◽  
David Gillanders ◽  
Kathryn Quinn
Keyword(s):  
Factor Structure ◽  
Convergent Validity ◽  
Depression Scale ◽  
Clinical Score ◽  
Epidemiological Studies ◽  
Postal Survey ◽  
Care Recipient ◽  
Outcome Variable ◽  
Dementia Caregivers ◽  
Cross Sectional

ABSTRACTBackground:Depression is well documented as a key outcome variable for dementia caregivers; however, guilt has been under-researched, which may be in part due to the lack of an appropriate measure. The Caregiver Guilt Questionnaire (CGQ) was originally developed and piloted with a Spanish population but has not yet been tested in an English-speaking population.Methods:A cross-sectional postal survey was undertaken with a sample of 221 dementia caregivers in the UK, as part of a larger study of dementia caregiver outcome measures.Results:The five-factor structure identified for the CGQ in the Spanish sample was replicated in this study. The five factors, “guilt about doing wrong by the care recipient,” “guilt about failing to meet the challenges of caregiving,” ‘guilt over experience of negative emotions in relation to caregiving,” “guilt about self-care,” and “guilt about neglecting other relatives” accounted for 60% of the variance. Internal consistencies for the whole scale and factors were acceptable, and convergent validity was established with the Zarit Burden Interview guilt factor. A higher score on the CGQ was associated with a higher score on the Center for Epidemiological Studies Depression scale (CES-D) and a new cut-off score of 22 was established, which predicted a clinical score on the CES-D with 80.0% sensitivity and 61.5% specificity.Conclusions:The replication of the five-factor structure suggests that these are relevant themes within the feelings of guilt to both Hispanic and British dementia caregivers. The CGQ has been demonstrated to be a valid measure for use with British dementia caregivers and is likely to be of use in clinical and research settings.

scholarly journals Initial Translation of a Dementia Caregiver Intervention Into a Mobile Health Application

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 274-274
Author(s):  
Taylor Maynard ◽  
Travis Frink ◽  
Kunal Mankodiya ◽  
Jennifer Davis ◽  
Brian Ott ◽  
...  
Keyword(s):  
Data Storage ◽  
Mobile Health ◽  
Behavioral Problems ◽  
Behavioral Interventions ◽  
Care Recipient ◽  
Dementia Caregivers ◽  
Empirically Supported ◽  
Mobile Health Application ◽  
Video Library ◽  
Health Application

Abstract Caring for a person with dementia is associated with negative outcomes. Few caregiver interventions have been implemented in community settings. Mobile technology is one method for reaching many caregivers. This project translated two empirically-supported interventions for dementia caregivers into a mobile health application. A team of clinical researchers and computer engineers developed an App called CARE-Well (Caregiver Assessment, Resources, and Education) over 6 months. The group worked closely to do the following: 1). translate interventional content to be compatible with a mobile platform; 2). create new materials; 3). determine App components that captured key intervention areas; 4). troubleshoot formatting, technology, and data security; and 5). educate each other about respective areas of expertise. We developed a beta version of the App that included: 1). assessment of caregiver stress and care recipient behavioral problems; 2). psychoeducation; 3). goal diary; 4). managing behavior problems; 5). online message forum; and 6). video library. Several challenges arose during the App development process, such as how to create navigation paths and goal lists based off users’ assessment responses, data storage and usage tracking, enlarging text, and how to ensure privacy and confidentiality in the online message forum. Our experience developing the CARE-Well App showed that translating behavioral interventions into mobile health applications is feasible and dependent upon regular communication among multidisciplinary team members. Next steps for the App include beta testing with dementia caregivers and conducting a pilot randomized trial to determine feasibility for a future trial and its effects on caregiver stress.

scholarly journals Stress, Burden, and Well-Being in Dementia and Nondementia Caregivers: Insights From the Caregiving Transitions Study

2020 ◽  
Author(s):  
Orla C Sheehan ◽  
William E Haley ◽  
Virginia J Howard ◽  
Jin Huang ◽  
J David Rhodes ◽  
...  
Keyword(s):  
Racial Differences ◽  
Behavioral Problems ◽  
Well Being ◽  
Population Based ◽  
Care Recipient ◽  
Dementia Caregivers ◽  
Age In Place ◽  
More Care ◽  
Regards Study ◽  
Stress Burden

Abstract Background and Objectives Few population-based studies have directly compared caregivers of persons with dementia to caregivers of persons with other disabilities (nondementia caregivers). We enrolled dementia and nondementia caregivers who were providing substantial and sustained care and compared these groups on measures of caregiver stressors, appraisals of burden, and well-being. Research Design and Methods Caregivers (N = 251) who provided continuous care for at least 1 year and at least 5 h per week were recruited from the population-based REasons for Geographic And Racial Differences in Stroke (REGARDS) study. Caregivers reported on dementia caregiving status, stressors, burden, and well-being. Results Forty-seven percent (n = 117) reported caring for a person with dementia. Dementia caregivers reported more stressors, providing more care for self-care and behavioral problems than nondementia caregivers. Dementia caregivers also reported higher appraisals of stress and burden, and more depressive symptoms, but did not differ from nondementia caregivers on mental and physical health quality of life. In multivariable-adjusted models, adjustment for the total number of care recipient problems attenuated differences between dementia and nondementia caregivers on burden and depression measures. Discussion and Implications Dementia and nondementia caregivers showed relatively few differences in indicators of overall well-being in this population-based sample, perhaps because both groups of caregivers in this study were providing substantial care. Dementia caregivers may require special assistance with dementia-specific problems such as behavioral problems. Clinical interventions and policy changes targeting highly burdened caregivers are needed to support them in allowing their care recipients to age in place at home.

Measuring Outcomes in Alzheimer's Disease

1996 ◽  
Vol 8 (S1) ◽  
pp. 13-16 ◽  
Author(s):  
Rhonda J. V. Montgomery
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Behavioral Problems ◽  
Negative Consequences ◽  
Negative Effects ◽  
Target Individual ◽  
Measuring Outcomes ◽  
Study Designs ◽  
The Impact ◽  
Initial Target

The premise underlying the implementation of any intervention aimed at changing behavioral or other symptoms of Alzheimer's disease (AD) is that the change will be beneficial in some manner for the patient and the benefits will outweigh any negative consequences that may simultaneously result from the intervention. Consequently, the ultimate task of investigators studying the impact of proposed interventions is to identify and measure the benefit that stems from the intervention, as well as any negative effects. When interventions are intended to create organic changes, as is traditionally true with pharmacologic interventions, the identification of relevant outcomes is made relatively simple through indicators of organic functioning. However, when intended changes are behavioral, the identification of appropriate outcomes is far more complex. An individual's behavior ultimately has an impact on all the actors within his or her social setting, directly or indirectly. Furthermore, changes in an individual's behavior may have an impact on other persons in such a way that these secondary changes feed back to further influence the initial target individual. Hence, it is likely that the most appropriate study designs for assessing the impact of interventions aimed at behavioral problems will include multiple outcome measures for multiple actors.

scholarly journals Critical Analysis of Athlete Retirement from Sport

2019 ◽  
Vol 1 (13) ◽  
Author(s):  
Milda Treigienė ◽  
Saulius Šukys
Keyword(s):  
Social Life ◽  
Transition Period ◽  
Negative Impact ◽  
Personal Responsibility ◽  
Athletic Identity ◽  
Research Literature ◽  
Negative Consequences ◽  
Health Related ◽  
Scientific Practical ◽  
Career Termination

Object of the analysis. Investigation problem. Athletes' retirement from sports activities and their life after the end of their sports career is relevant in scientific, practical and social terms. The purpose of this study was to provide an overview of scientific studies on athletes’ retirement from sport and how it relates to their life after their carrier in sports.Research methods. The analysis of scientific literature revealed that the main reasons for athletes to finish their careers in sports were trauma, health-related problems or age. Retirement can also be associated with family or family planning. Sports career termination is discussed in two ways, when one retires from sport voluntarily and when one is forced to do so. Voluntary retirement for athletes is usually a planned event and thus most often it does not have a negative impact on their future life. These athletes tend to choose a family over their sports carriers, continue their education or go to work in sports related sectors. Another important factor is athletic identity. Athletes with strong athletic identity during their sports careers tend to have better social life after their retirement. These athletes also tend to have a strong athletic identity after their careers, thus they are less likely to experience stress or depressive symptoms due to their sports career termination. Forced retirement from sports career is usually due to career-ending injuries. Such career outcome is associated with greater short-term and long-term problems in the post-sport transition period. Since athletic careers are strongly controlled by others, the unforeseen outcomes of an unexpected sports career termination results in negative consequences that are related to increased personal responsibility for their further actions. This becomes a greater problem for those athletes that have a higher level of athletic identity as it results in anxiety and depression. Therefore, forced retirement from a sports career is considered to be the most troublesome and worrying problem in the field.Outcomes and conclusions An examination of research literature focused on athlete’s retirement suggests that termination of a sports career is an important event the consequences of which depend on whether it ends by own choice or not. Since the planned retirement from the sports career is less challenging, it is important to help athletes prepare for this stage of their lives. Additionally, it is crucial to focus all efforts on creating a support system for athletes who were forced to end their athletic careers.Keywords: athletic carrier, retirement, life after sport.

scholarly journals Prevalence and correlates of psychiatric morbidity in Egyptian sample of dementia patients’ caregivers: a comparative descriptive study

2019 ◽  
Vol 26 (1) ◽  
Author(s):  
Yasser Abd El Razek ◽  
Walaa Sabry ◽  
Heba Hendawy ◽  
Dalia Hegazy ◽  
Marwa Soultan ◽  
...  
Keyword(s):  
Activities Of Daily Living ◽  
Psychological Health ◽  
Daily Living ◽  
General Health Questionnaire ◽  
Psychiatric Morbidity ◽  
The Other ◽  
Negative Consequences ◽  
Dementia Caregivers ◽  
Axis I ◽  
Caregiver Group

Abstract Background A strong relationship between dementia caregiving and negative consequences on psychological health of caregivers has been established in numerous studies. A meticulous evaluation of caregiver mental status function is of utmost importance to gain better insight into daily caregiver functioning and to alleviate their high levels of burden. This study evaluated the prevalence of psychiatric morbidities and their sociodemographic and clinical correlates among a sample of dementia caregivers in Egypt. Twenty-five caregivers of patients with dementia were collected and compared with regard to their psychiatric morbidity with 25 careers of patients with chronic physical diseases. Patients were subjected to Mini-Mental State Examination (MMSE) and Arabic versions of activities of daily living (ADL) and instrumental activities of daily living (IADL), and caregivers were interviewed using the Arabic version of the General Health Questionnaire (GHQ), Structured Clinical Interview for DSM-IV Axis I Disorders (SCID-I), and Zarit Burden Interview (ZBI). Results Caregiver’s burden was significantly higher among the dementia caregiver group than the non-dementia group. Moreover, dementia caregivers provided more aid with a higher total of ADLs and provided help for more IADLs than did the non-dementia caregivers. They also showed higher psychiatric morbidity. Such morbidity was found to be related to hours of caring, years of caring, GHQ, ZBI, ADL/IADL, BPSD, and MMSE. On the other hand, ADL, IADL, and GHQ scores had the highest predictive significance of caregiver’s burden in our study. Conclusions Caregivers of patients with dementia are subjected to more burden and vulnerability to psychiatric disorders than the other caregiver group. That should raise a flag to pay extra support and care for those people, which in turn will benefit both the patient and the health care authorities in terms of quality and cost of the care provided.

scholarly journals Trust and organisational performance: A grounded theory approach for a South African district municipality

2019 ◽  
Vol 17 ◽  
Author(s):  
Zwelinzima J. Ndevu
Keyword(s):  
Local Government ◽  
Performance Management ◽  
South African ◽  
Employee Performance ◽  
Research Literature ◽  
Theory Approach ◽  
Negative Consequences ◽  
Organisational Performance ◽  
Managerial Implications ◽  
Value Add

Orientation: A key role of local government in providing transparent, honest, accountable, efficient and effective service delivery to the communities they serve is determined by a number of plans, designs, actions and implementation. Trust among communities in the organisational set up is key in the success or failure of the efforts of the municipal entity and affects their individual and group performance.Research purpose: This study examines the relationship between trust and performance within a municipal environment and its effect on service delivery.Motivation for the study: The lack of sufficient and usable knowledge and information on the issue created the need for this research project that is an on-going effort dissecting and analysing key human resources challenges in the public sector.Research approach/design and method: Following a brief outline of the legislation, rules and regulations that determine the responsibilities of local government in South Africa and the context of the study, the qualitative method and design of focus groups as the key instrument of data collection was identified and analysed.Main findings: The results of the study pointed to the lack of trust among leadership and employees at all organisational levels.Practical/managerial implications: The existence of mistrust and problems identified in the process of performance management and evaluation has negative consequences on employee performance in the municipality.Contribution/value-add: The study findings have opened new doors to understanding key elements of organisational performance as the topic has received very scant attention in South African research literature.

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