<i>‘I feel like my house was taken away from me’</i>
            : Parents' experiences of having home adaptations for their medically complex, technology‐dependent child

Mitchell, Tracy; Bray, Lucy; Blake, Lucy; Dickinson, Annette; Carter, Bernie

doi:10.1111/hsc.13870

Cited by 6 publications

(2 citation statements)

References 69 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…22 Therefore, we should support home care to improve parents' and their children's physical, emotional, and mental health. 23 Our participants reported that they struggled with the increased burden of care after their children were discharged. They added that they were socially isolated because they could not share their burden with other family members and feared that they would not be accepted by society.…”

Section: Discussionmentioning

confidence: 94%

Home care experiences of mothers of children with tracheostomies – a qualitative study

Donmez,

Gozetici

2023

Eur J Clin Exp Med

View full text Add to dashboard Cite

Introduction and aim. Parents of children who are addicted to technology have many problems in home care. This study aimed to describe the home care experiences of mothers of children with tracheostomies. Material and methods. The study adopted Husserl’s phenomenological method, a qualitative research design. The sample consisted of 23 mothers of children with tracheostomies followed up in the pediatric pulmonology outpatient clinic of a university hospital. All participants cared for their children at home. Data were collected using a sociodemographic questionnaire and a semi-structured interview questionnaire. All interviews were recorded and transcribed. Results. Children (12 girls and 11 boys) had a mean age of 3.43±3.326 years. The mean age of tracheostomy insertion was 2.8±2.508 years. Seventeen children were on ventilator support. All participants were mothers with a mean age of 32.34±6.00 years. Half the mothers had primary school degrees (52.2%). The interviews revealed one main theme (burnout), three subthemes (social isolation, perception of competence, and regrets), and five categories (burden of care, fear, awareness, decisions, and role confusion). Conclusion. Mothers of children with tracheostomies experience numerous problems when they provide home care. They mostly have difficulty improving themselves and enduring role confusion. We must address the issues mothers of children with tracheostomies face during home care to reduce the prevalence of potential complications and improve the quality of care for both them and their children.

show abstract

Section: Discussionmentioning

confidence: 94%

Home care experiences of mothers of children with tracheostomies – a qualitative study

Donmez,

Gozetici

2023

Eur J Clin Exp Med

View full text Add to dashboard Cite

show abstract

“…Children with SMID require 24-h caregiving, thus, creating a physical and psychological burden for primary caregivers who are mostly mothers. They face physical and emotional strain from daily caregiving (4)(5)(6), limited opportunities to do their work or participate in social activities (7,8), and restrictions on family time (9).…”

Section: Introductionmentioning

confidence: 99%

Social support needs of caregivers rearing children with severe motor and intellectual disabilities at home in Japan

Wakimizu,

Fujioka

2024

Front. Rehabil. Sci.

View full text Add to dashboard Cite

BackgroundIn Japan, recently, the number of children with severe motor and intellectual disabilities (SMID) is steadily increasing. Caregivers such as parents and family members are struggling with how to live with their children at home and in the community after discharge.ObjectiveThe current study aimed to explore the social support needs faced by caregivers while rearing children with SMID in order to identify effective means of social support in Japan.MethodsWe conducted a cross-sectional survey of the primary caregivers of children with SMID at home through special-needs elementary, junior high, and senior high schools nationwide, using a self-administered, anonymous questionnaire to investigate the actual social support needs of the caregivers. All statements of social support need were coded using Krippendorff content analysis.ResultsQuestionnaire returns were obtained from 1,176 families, and the descriptions of 1,173 families were included in the analysis. The results of the analysis showed that the needs of the caregivers consisted of seven categories.ConclusionsThe social support needs expressed by the caregivers are necessary findings for Japan today, both for the soft side, such as the development of local systems and regulations to support these families, and for the hard side, such as the increase and improvement of facilities and equipment.

show abstract

Creating a home with a critically ill child: A qualitative study exploring the experiences of parents of children admitted to paediatric critical care following treatment in neonatal care

Seaton,

Manning,

Colville

et al. 2024

Australian Critical Care

View full text Add to dashboard Cite

‘I feel like my house was taken away from me’ : Parents' experiences of having home adaptations for their medically complex, technology‐dependent child

Abstract: Children who are dependent upon technology are resource-intensive (Breneol et al., 2019), a high-cost subpopulation of seriously ill babies, children and young people with life-limiting conditions (de

Cited by 6 publications

References 69 publications

Home care experiences of mothers of children with tracheostomies – a qualitative study

Home care experiences of mothers of children with tracheostomies – a qualitative study

Social support needs of caregivers rearing children with severe motor and intellectual disabilities at home in Japan

Creating a home with a critically ill child: A qualitative study exploring the experiences of parents of children admitted to paediatric critical care following treatment in neonatal care

Contact Info

Product

Resources

About