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Life After an Autism Spectrum Disorder Diagnosis: A Comparison of Stress and Coping Profiles of African American and Euro-American Caregivers

The purpose of the present study was to understand how caregiver stress and coping behaviors impact African American and Euro-American families differently when caring for a child with autism. This study used discriminate function analysis to contrast the stress and coping profiles of Euro-American caregivers who are more acculturated with the majority culture with African American caregivers who ascribe to more traditional values. A sample of 103 families was recruited (52 Euro-American, 51 African American).

Tue, 12/13/2022 - 15:41

Awareness of genetic testing for children with autism spectrum disorder among caregivers in an autism support group

Recent discoveries have improved our understanding of the complex genetic mechanisms underlying autism spectrum disorder (ASD). Despite current guidelines, genetic testing for children with ASD is largely underutilized. This has been attributed to a lack of public awareness regarding genetic testing. The role that autism support groups play in this awareness has not been previously described. A web-based survey was developed and distributed through a community support group to assess the awareness and utilization of genetic testing among caregivers for children with ASD.

Tue, 12/13/2022 - 11:17

Family Burden of Raising a Child with ADHD

The purpose of the study was to estimate the burden to families of raising a child with attention-deficit/hyperactivity disorder (ADHD). Data were drawn from a longitudinal sample recruited in western Pennsylvania. When participants were between 14 and 17 years old, parents completed a questionnaire assessing economic burden over the course of raising their children. Domains of economic burden to families included direct costs related to child's behaviors (excluding treatment expenses) and indirect costs related to caregiver strain.

Tue, 12/13/2022 - 10:49

Prerequisites for providing effective support to family caregivers within the primary care setting - results of a study series in Germany

BACKGROUND: General Practitioners are considered to be well placed to monitor home-care settings and to respond specifically to family caregivers. To do this, they must be sensitive to the needs and expectations of caregivers. In order to determine the current status of GP care in terms of the support given to family caregivers, a series of studies were conducted to gather the perspectives of both caregivers and GPs.

Sat, 09/03/2022 - 14:40

Physical activity, confidence and quality of life among cancer patient-carer dyads

Background: Physical activity (PA) has been positively associated with health-related quality of life (HRQoL) among cancer patients and family caregivers. However, there has been no relevant research for patient-caregiver dyads. Methods: Path analysis, based on the actor–partner interdependence model (APIM), was used to examine the relationship between physical activity and health-related quality of life and explore the mediating role of emotional distress in 233 dyads.

Sat, 09/03/2022 - 14:20

Patient, family and productivity costs of end-stage renal disease in the Netherlands; exposing non-healthcare related costs

Background: Healthcare costs related to ESRD are well-described, but broader societal costs of ESRD are less known. Objectives: This study aimed to estimate patient and family costs, including informal care costs and out-of-pocket costs, and costs due to productivity loss related to ESRD, for patients receiving dialysis and living with a kidney transplant, using a bottom-up approach.

Sat, 09/03/2022 - 13:51

Is the health literacy of informal caregivers associated with the psychological outcomes of breast cancer survivors?

Background: To investigate whether health literacy (HL) among informal caregivers of breast cancer (BC) survivors is associated with patient psychological outcomes. Methods: We used data (n = 340 pairs) from baseline questionnaires administered in the MyHealth trial investigating nurse-led BC follow-up. All BC survivors and their invited caregivers were included immediately after completion of primary treatment.

Sat, 09/03/2022 - 12:10

Intergenerational caring: a systematic literature review on young and young adult caregivers of older people

Background: The theme of young family caregivers of older relatives is still partially uncovered, although the phenomenon is increasing worldwide. This Systematic Literature Review discusses methodological and content issues of ten articles covering this topic, in order to contribute to increase the knowledge and provide suggestions for designing effective support services for adolescent young caregivers.

Sat, 09/03/2022 - 11:28

Impacts and Burden of Niemann pick Type-C: a patient and caregiver perspective

Background: Niemann-Pick disease type C (NPC) is a debilitating condition that impacts patients’ and caregivers’ quality of life (QOL) and reduces the patient’s life expectancy. Objectives: Since there is little qualitative research from the perspective of patients and family caregivers, this study explored the impact of NPC on patients’ and caregivers’ daily lives to understand the burden of disease.

Fri, 09/02/2022 - 22:10

The impacts of caregiving intensity on informal caregivers in Malaysia: findings from a national survey

Background: Provision of informal care may adversely affect health, daily and social activities of the informal caregivers, but few studies have examined these effects in relation to caregiving intensity. This study examined the predictive factors associated with the effects of caregiving roles on health, daily and social activities of informal caregivers, accounting for caregiving intensity. Methods: Data of adults aged 18 years and over from the National Health and Morbidity Survey 2019 were used.

Fri, 09/02/2022 - 22:01

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