Fathers of children with autism spectrum disorder: Their perceptions of paternal role a predictor of caregiving satisfaction,self-efficacy and burden

BackgroundThe positive effect of a father’s involvement in children’s upbringing is now recognised. However, research on fathers raising children with autism spectrum disorder (ASD) are still few. This study examines the relationship between the perception, fathers of children with ASD have of the importance of their role in the development of their children and the feelings (self-efficacy, caregiving burden, satisfaction) they express about their parenting experience.MethodSixty-three Swiss Italian fathers of children with ASD completed The Role of the Father Questionnaire (ROFQ), three sub-scales of the Caregiver Survey, a subtest of the Child Adjustment and Parent Efficacy Scale and a home-made questionnaire measuring Perceived Social Support.ResultsThe results from hierarchical multiple regression analyses show that the importance that fathers attach to the paternal role predicts positively their caregiving satisfaction and their feeling of self-efficacy. The children’s challenging behaviours predict positively the caregiving burden whereas the assessment of social support predicts it negatively.ConclusionsThe perception of the importance of the paternal role needs to be considered in the support offered to families with a child with ASD. A better understanding of the fathers’ feelings could be of value for the programmes.     

Family Caregivers' Subjective Caregiving Burden,Quality of Life,and Depressive Symptoms Are Associated With Terminally Ill Cancer Patients' Distinct Patterns of Conjoint Symptom Distress and Functional Impairment in Their Last Six Months of Life

Context

Family caregivers constitute a critical component of the end-of-life care system with considerable cost to themselves. However, the joint association of terminally ill cancer patients' symptom distress and functional impairment with caregivers' subjective caregiving burden, quality of life (QOL), and depressive symptoms remains unknown.

Guardians of health: The dimensions of elder caregiving among women in a Mexico City neighborhood

Little is known about the family care of older adults in Mexico and the role of women in this process. To begin to fill this knowledge gap, this paper describes how a small sample of low-income women in one Mexico City neighborhood conceptualized the caregiver role and identified the forms of assistance they gave to their older relatives on a daily basis. A grounded theory approach was used to collect and analyze the data. Forty-one semi-structured qualitative interviews were conducted with female caregivers. The age of participants was between 19 and 83 years, and care recipients between 56 and 92 years. The relationship of caregiver to care recipient was wife, daughter, daughter-in-law, granddaughter, sibling, and other relative. The mean length of time providing care was 5 years. Most participants were not employed outside the home, and the median monthly household income was 2000 pesos. We found that caregiving was a life-changing event, with 27 of 41 participants viewing themselves as guardians. Caregivers' emphasis was on care recipients' emotional needs in order to provide “the most precious gift” of “time and attention.” Two forms of assistance were ‘keeping company’ and ‘watching out’ as safeguards against poor health or further decline in health. These findings increase the cultural understanding of caregiving in Mexico. Further research is needed to test the caregiving concepts identified in this study.     

Caregiver Education and Support: Results of a Multi-Site Pilot in an HMO

ABSTRACT

Caregiver workshops were offered to members by a group practice HMO as part of a larger demonstration of adding community care to HMO services. Of 1,200 members indicating interest at four sites, 532 participated in workshops and 320 completed pre- and post-questionnaires on effectiveness. Analyses showed improvements in caregiving preparedness and reductions in sadness and depression. Engagement in the workshops (completing 3 or more sessions) and improvements were more likely for individuals with more independent lives and social capital. Alternative helping strategies are recommended for caregivers who are less likely to engage in classes due to burden or lack of respite or transportation.     

Identifying elder abuse & neglect among family caregiving dyads: A cross sectional study of psychometric properties of the QualCare scale

Background/objectivesUniversal screening for elder abuse and neglect is a current controversy in geriatrics, fueled by the lack of evidence on valid and reliable instruments. Since each U.S. State and many other countries have their own legal definitions of what constitutes elder abuse and neglect, this further complicates instrument development and clinical assessment. The purpose of this paper is to present data on the sensitivity and specificity of the QualCare Scale, an instrument with utility in detecting clinically significant elder abuse and neglect among older adults receiving care at home.DesignData used in this analysis were collected during a training program in which trainees completed assessments (N = 80) of standardized case scenarios of caregiving dyads. Trainees completed the QualCare Scale during each assessment.SettingThis training program, including the assessments of the standardized case scenarios, was completed using a custom designed virtual-reality platform. Trainees were able to interact with the environment, older adult and caregiver within the case scenario.ParticipantsThirty-six nurses and social workers from two Michigan Medicaid Waiver Sites participated in the training program. Each participant assessed between one and five scenarios, yielding the sample of 80 assessments used in this analysis.MeasurementsThe research team designed each standardized case scenario to reflect whether or not the QualCare Scale subscale score should indicate reportable elder abuse and neglect per the State statute. Accordingly, the research team’s QualCare Scale scores for each scenario were used as the gold standard criterion of clinical significance for comparison against the participant’s assessment scores.ResultsSensitivity and specificity for each of the six QualCare subscales was determined. Overall, the subscales had high sensitivity (≥0.811) but a wide range for specificity (0.167–1.000).ConclusionThe QualCare Scale can be an effective tool in detecting clinically significant elder abuse and neglect among older adults receiving care at home. This tool is suitable and feasible for use by practitioners working in home care. The QualCare Scale score indicating clinically significant or reportable elder abuse and neglect can be raised or lowered to be consistent with State or Country statutes, or simply used to create appropriate care plans to support caregiving. Findings from the QualCare Scale can support the multidisciplinary team in planning for and evaluating preventative interventions.     

Effects of an adapted leisure education program as a means of support for caregivers of people with dementia

The loss of autonomy associated with dementia affects the people with dementia themselves as well as their caregivers who are often left feeling powerless and incompetent in their caregiving role. Most of the programs developed to support caregivers focus on burden and do not consider the positive aspects of caregiving. Leisure represents a way to enhance the presence of positive aspects in the caring experience. Moreover, leisure might contribute to the maintenance of satisfactory relationships between the caregivers and the person with dementia. An adapted leisure education program was developed as a means of support to caregiver involvement. This study (n = 49) aims to evaluate the impact of this program on caregivers’ well-being, self-efficacy towards adapted leisure, and quality of the relationship with the care receiver. Mixed methods were used. Pretest-posttest with a follow-up design made up the quantitative part. In addition, open-end interviews (n = 10) were conducted. The quantitative results showed few impacts of the program on caregivers. However, the qualitative analysis revealed that the intervention had positive impacts for the caregivers, care receivers and other family members. This study introduces caregiver support in a new, positive perspective by focusing on the positive aspects of caregiving rather than the burden.     

Spiritual/religious coping and depressive symptoms in informal caregivers of hospitalized older adults

This aim of this study was assess whether positive and negative spiritual/religious coping (SRC) strategies are associated with depressive symptoms (DS) of informal caregiver (IC) of hospitalized older adults. A cross-sectional study was conducted among 98 IC of hospitalized older adults in the medical clinic of a Brazilian School Hospital. The functionality, Positive and Negative SRC strategies and DS were evaluated. The IC had high average use of SRC, with Positive SRC being more used than Negative SRC. In the unadjusted regression model, Positive and Negative SRC were associated with DS. However, when adjusted for confounding factors, only Negative SRC remained associated with DS. The IC had used their religious and spiritual beliefs as a way to cope with the stress that comes from caring for hospitalized older adults. Although the positive strategy use of these beliefs was more common, only the negative strategies were associated with a higher DS.