Dataset Information

How parents describe the positive aspects of parenting their child who has intellectual disabilities: A systematic review and narrative synthesis.

ABSTRACT: BACKGROUND:Identifying what parents describe to be positive about parenting their child who has intellectual disabilities is important for professional practice and how parents can be supported over a lifespan. METHODS:Studies in which parents describe the positive aspects of parenting their child with intellectual disabilities were identified via electronic databases searches and analysed in a narrative synthesis. RESULTS:Twenty-two studies were included. Consistent themes emerged relating to positive change, increased personal strength, growth and development largely related to parental intrapersonal orientation. Several studies emphasized that the presence of growth or positive change does not imply the absence of distress. CONCLUSIONS:Positive aspects are not consistently defined and measured differently across studies. Consistent themes are described variously attributed to theories relating to coping, adaptation or growth following adversity; however, no single theoretical framework emerged. Factors likely to predict a parent's ability to identify positive aspects are inconclusive.

SUBMITTER: Beighton C

PROVIDER: S-EPMC6852490 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

How parents describe the positive aspects of parenting their child who has intellectual disabilities: A systematic review and narrative synthesis.

Beighton Carole C Wills Jane J

Journal of applied research in intellectual disabilities : JARID 20190520 5

<h4>Background</h4>Identifying what parents describe to be positive about parenting their child who has intellectual disabilities is important for professional practice and how parents can be supported over a lifespan.<h4>Methods</h4>Studies in which parents describe the positive aspects of parenting their child with intellectual disabilities were identified via electronic databases searches and analysed in a narrative synthesis.<h4>Results</h4>Twenty-two studies were included. Consistent themes ...[more]

PMID: 31111640

Similar Datasets

Project description:INTRODUCTION:Although caring for a child with intellectual and developmental disabilities (IDD) can have positive outcomes, parents may be at a greater risk of depression and anxiety, due to a number of associated stressors, such as increased caregiver demands and financial strain. This systematic review updates previous data, exploring the relationship between parenting a child with IDD and parental depression and anxiety. METHODS:Five electronic databases were searched for eligible English-language articles, published between January 2004 and July 2018. All epidemiological study designs were eligible, provided the level of depression and/or anxiety was compared between parents of children (aged <18) with and without IDD. No limit was placed on geographic location. The proportion of positive associations between parenting a child with IDD and depression/anxiety were disaggregated by disability type, geographic region, and sample size. The percentage of parents at risk of moderate depression or anxiety were calculated using recognised clinical cut-off scores for each screening tool. Meta-analyses, in which pooled effect sizes of elevated depression and anxiety symptoms were calculated, were conducted across two IDD conditions, autism and cerebral palsy. RESULTS:Of the 5,839 unique records screened, 19 studies fulfilled the inclusion criteria. The majority of studies were conducted in high-income (n = 8, 42%) or upper-middle income countries (n = 10, 53%). Of the 19 studies, 69% focused on parents of children with cerebral palsy (n = 7, 37%) or autism (n = 6, 32%). Nearly all studies found a positive association between parenting a child with IDD and depression (n = 18, 95%) and anxiety (n = 9, 90%) symptoms. Factors associated with higher levels of depression symptoms amongst parents of children with IDD included disability severity (n = 8, 78%) and lower household income (n = 4, 80%). Approximately one third (31%) of parents of children with IDD reach the clinical cut-off score for moderate depression, compared with 7% of parents of children without IDD. 31% of parents of children with IDD reach the cut-off score for moderate anxiety, compared with 14% of parents of children without IDD. The meta-analyses demonstrated moderate effect sizes for elevated depression amongst parents of children with autism and cerebral palsy. CONCLUSIONS:Results indicate elevated levels of depressive symptoms amongst parents of children with IDD. Quality concerns amongst the existing literature support the need for further research, especially in low- and middle-income countries.

Project description:BackgroundThe transition process from the family home to independent living for young adults with profound intellectual disability (PID) becomes delayed. Those families face challenges that exceed those of typical families such as higher objective and subjective burden, more frequent psychological distress and lower social support. The aim of this study was to explore the collaboration process between parents and employees and identify factors that improve the transition with less burden.MethodsA descriptive qualitative study was undertaken with 18 persons (9 parents and 9 employees) interviewed individually and in groups. In accordance with the municipality's guidelines, families with a child with PID should apply for housing, when the child turns 16. The purpose is to ensure interdisciplinary collaboration, information flow and coordinated services according to family's needs. The main question in the interviews was 'What was your experience with cooperation in the transition process, and what would you do to improve this process?' The interviews were analysed with a thematic approach using systematic text condensation.ResultsThe parents experienced a lack of general information about the 'housing waiting list', level of services, and the plan for time of moving from the family home, and how to choose where and whom to live with. Parents described an unsustainable burden of care during the waiting period, and a family crisis caused the allocation of an apartment in a group house. Employees shared challenges to meet families' wishes, as there were too few group homes. They experienced good collaboration with families and said they offered respite care, due to reduce parents' burden of care. Employees experienced that PID adolescents developed skills, mastery and degrees of independence after completing a residency at the Folk High School.ConclusionsTo improve the transition process from family home to independent living for young adults with PID, the informants highlighted some factors to reduce the burden of care on families: 1) Systematic follow-up program for families to observe their needs at an early stage; 2) More available group houses; 3) Information about the housing priorities of the services and; 4) Educational preparation programs for families.

Dataset Information

How parents describe the positive aspects of parenting their child who has intellectual disabilities: A systematic review and narrative synthesis.

Publications

How parents describe the positive aspects of parenting their child who has intellectual disabilities: A systematic review and narrative synthesis.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets