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Family rules, routines, and caregiver distress during the first year of pediatric cancer treatment

Objective: A new diagnosis of pediatric cancer may disrupt family functioning. The current study aimed to describe changes in family rules and routines during the first year of pediatric cancer treatment, and to explore associations with demographics, illness factors, and caregiver distress. Methods: This exploratory mixed‐methods, cross‐sectional study examined 44 primary caregivers of youth in treatment for a new cancer diagnosis in 2019 and 2020, before the onset of the COVID‐19 pandemic.

Mon, 05/30/2022 - 16:26

Caregiver's difficulty paying child's healthcare bills and bullying victimization of adolescents with physical disabilities

Objective: Guided by the ecological systems perspective, the objective of the study was to examine whether caregivers' difficulty paying their child's health‐care bills is associated with bullying victimization directly and indirectly through the mediating mechanisms of caregivers' frustration, adolescents' internalizing problems, and social difficulty focusing on adolescents with physical disabilities.

Mon, 01/24/2022 - 20:38

Autism-specific parenting self-efficacy: An examination of the role of parent-reported intervention involvement, satisfaction with intervention-related training, and caregiver burden

Background: Parenting self-efficacy, described as the beliefs parents hold about their ability to successfully parent their children, has been shown to support parent and child well-being. Parents of children with autism spectrum disorder face disproportionately high levels of demand both as caregivers, and as partners in multiple, complex, intervention programs.

Thu, 01/13/2022 - 12:57

Experiences and perspectives of the parents of emerging adults living with type 1 diabetes

Introduction Whereas it is widely recognized that emerging adulthood can be a difficult time in the life of an individual living with type 1 diabetes, relatively little is known about the experiences of their parents or guardians. These individuals once shouldered much of the burden for their child's diabetes 'self'-management, yet their contribution is often overlooked by the adult healthcare system. Here, we set out to gain an understanding of the perspectives of parents of emerging adults living with type 1 diabetes.

Sun, 11/29/2020 - 12:44

“I have to be both mother and father”: The impact of Young-onset dementia on the partner’s parenting and the children’s experience

There has been increasing research on the experience and needs of caregivers for persons with YOD, who are mainly spouses. Yet one little-explored area is their evolving parental role. As the person with YOD becomes less able to parent, the partner must take on more and more parental responsibilities. This occurs in much-changed familial context, with children often asked to assume caretaking roles and experiencing strong feelings such as grief, anger, and fear.

Mon, 07/27/2020 - 13:06

Planning for the future: Exploring the experiences of older carers of adult children with a learning disability

Accessible summary: There are a large number of adults with learning disabilities who live with and are cared for by their parents.There is a need for interventions to support older carers with their caring role and to plan for a time when they can no longer continue caring.This research looked at a local support service in England that aimed to support carers over 55 who had an adult child with a learning disability living at home.Twelve carers were interviewed individually.The study highlights the unmet needs of older family carers and shows the value of support from a ca

Mon, 01/27/2020 - 13:06

Aging in Place in Every Community: Social Exclusion Experiences of Parents of Adult children With Autism Spectrum Disorder

This article offers an examination of aging processes of lifelong caregivers and the possibilities for social exclusion place experienced by parents of adult children with autism spectrum disorder (ASD). This study of parental caregivers (n = 51) sheds light on how enduring caregiving roles can lead to social exclusion in three ways: misunderstanding of ASD and stigma, the complexity of the caregiving roles, and impact on daily routines including challenges with long-term planning for both the adult children and the parental caregivers.

Wed, 10/31/2018 - 14:32

Parents of Adults with Intellectual and Developmental Disabilities (IDD) and Compound Caregiving Responsibilities

In some cases, parents caring for an adult child with an intellectual and/or developmental disability (IDD) must balance this with caregiving for another family member. This dual responsibility, referred to as 'compound caregiving', may contribute to increased feelings of distress, or change their perceived ability to care for their child. The current study examined how compound caregivers differ from other parents of adults with IDD, and whether compound caregiving is significantly associated with family distress.

Wed, 10/24/2018 - 12:12

Changing economic and social roles : the experience of four cohorts of mid-life individuals in Britain, 1985-2000

Men and women in Great Britain are increasingly involved in a variety of economic and social roles, particularly during their mid-life period. This article examines the changes in role occupancy across four birth cohorts passing through mid-life over the period 1985-2000. Data from the General Household Survey is used to investigate the occupancy of four key roles: 'partner', 'parent', 'carer' and 'paid worker', analysing separate and multiple role occupancies and level of commitment to a particular role.

Thu, 07/20/2017 - 15:21

The Simon Heng column

Presents views on social care among children. Overview of a 2005 report by The Education Network about young carers; Decision to be a good parent upon the acquisition of a disability; Reasons why parents should impose responsibilities on their children when they risk damaging their futures.

Thu, 07/20/2017 - 15:17

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