Caring for a child with severe intellectual disability in China: The example of Rett syndrome

Lim, Faye Janice; Downs, Jenny; Li, Jianghong; Bao, Xinhua; Leonard, Helen

doi:10.3109/09638288.2012.715720

Cited by 13 publications

(18 citation statements)

References 51 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…In this way, relevant information was collected from the caregivers’ perspective. The question guide was developed based on a prior literature review [6,7,8,9,10,11,12,13] and the researchers’ experience [16].…”

Section: Methodsmentioning

confidence: 99%

See 1 more Smart Citation

“Living an Obstacle Course”: A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome

Palacios‐Ceña

Famoso-Pérez

Salom‐Moreno

et al. 2018

IJERPH

View full text Add to dashboard Cite

Background: Rett syndrome has considerable effects on the quality of life of affected children, impairing everyday activities and potentially impacting the life of both the caregivers and the family. Our aim was to explore the experiences of a group of caregivers of children with Rett syndrome with regards to living and caring for their children. Methods: We conducted a qualitative case study to examine how 31 caregivers of children with Rett syndrome perceived living with their children. Data were collected through in-depth interviews, focus groups, researchers’ field notes and caregivers’ personal documents. A thematic analysis was performed following the Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline. Results: The experience of being a caregiver of a child with Rett syndrome was expressed as being akin to an “obstacle course”, and was described via three main themes: (a) looking for answers, with two subthemes identified, namely ‘the first symptoms’, and ‘the need for a diagnosis’; (b) managing day to day life, with the subthemes ‘applying treatments’, and ‘learning to care’; and (c) money matters. Conclusions: Rett syndrome has a considerable impact on the lives of the caregivers involved. The health-care process and the management of economic resources are some of the aspects highlighted by caregivers. These findings have important implications for the planning of support services, health systems and health policies.

show abstract

Section: Methodsmentioning

confidence: 99%

“…The experience and individual perspective of the caregivers concerned is relevant, just as one’s life experiences, ambitions and emotional needs should be considered when treating children with RTT [3,8,9,10,11,12,13]. Therefore, several questions remain unanswered: how do caregivers live and care for their children with RTT?…”

Section: Introductionmentioning

confidence: 99%

“Living an Obstacle Course”: A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome

Palacios‐Ceña

Famoso-Pérez

Salom‐Moreno

et al. 2018

IJERPH

View full text Add to dashboard Cite

show abstract

“…Therefore, it is important to include this dimension of behavioral phenotype severity in understanding family members' well-being. The extent of the health problems of individuals with Rett syndrome has also been associated with maternal wellbeing in quantitative (Byiers et al 2014) and qualitative research (Lim et al 2013). Data on behavioral phenotype severity and health problems need to be collected alongside a third factor that has been consistently and pervasively associated with parental well-being.…”

Section: Introductionmentioning

confidence: 98%

“…Lim et al (2013) interviewed 14 mothers of individuals with Rett syndrome in China and found that families had significant needs for support with their relative's health problems. In a survey study, Mulroy et al (2008) asked parents of individuals with Rett or Down syndromes about sibling experiences in the families.…”

Section: Introductionmentioning

confidence: 99%

Psychological Well-Being of Mothers and Siblings in Families of Girls and Women with Rett Syndrome

Cianfaglione

Hastings

Felce

et al. 2015

J Autism Dev Disord

View full text Add to dashboard Cite

Few published studies have reported on the psychological well-being of family members of individuals with Rett syndrome (RTT). Eighty-seven mothers of girls and women with RTT completed a questionnaire survey about their daughters' behavioral phenotype, current health, and behavior problems, and their own and a sibling's well-being. Mothers reported increased anxiety but similar levels of depression when compared to a normative sample. Across all problem domains on the Strengths and Difficulties Questionnaire, child and adolescent siblings (n = 39) were reported by mothers to have fewer difficulties than a normative sample. The severity of their daughters' RTT behavioral phenotype predicted increased anxiety and stress for mothers. Increased RTT daughters' current health problems predicted more maternal perceptions of positive gain.

show abstract

“…In addition to professionals and family members, society needs information about the capabilities of people with RTT and the changes that occur at different stages. Lim et al21 conducted a qualitative study exploring the daily experiences of families caring for children with RTT and found participants reporting a lack of education and rehabilitation and support services available to them. Those families reported that limited access to information reduced families’ capacity to adequately meet the needs of their child.…”

Section: Introductionmentioning

confidence: 99%

Quantification of functional abilities in Rett syndrome: a comparison between stages III and IV

Monteiro¹,

Savelsbergh²,

Smorenburg³

et al. 2014

NDT

View full text Add to dashboard Cite

We aimed to evaluate the functional abilities of persons with Rett syndrome (RTT) in stages III and IV. The group consisted of 60 females who had been diagnosed with RTT: 38 in stage III, mean age (years) of 9.14, with a standard deviation of 5.84 (minimum 2.2/maximum 26.4); and 22 in stage IV, mean age of 12.45, with a standard deviation of 6.17 (minimum 5.3/maximum 26.9). The evaluation was made using the Pediatric Evaluation of Disability Inventory, which has 197 items in the areas of self-care, mobility, and social function. The results showed that in the area of self-care, stage III and stage IV RTT persons had a level of 24.12 and 18.36 (P=0.002), respectively. In the area of mobility, stage III had 37.22 and stage IV had 14.64 (P<0.001), while in the area of social function, stage III had 17.72 and stage IV had 12.14 (P=0.016). In conclusion, although persons with stage III RTT have better functional abilities when compared with stage IV, the areas of mobility, self-care, and social function are quite affected, which shows a great functional dependency and need for help in basic activities of daily life.

show abstract

Caring for a child with severe intellectual disability in China: The example of Rett syndrome

Cited by 13 publications

References 51 publications

“Living an Obstacle Course”: A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome

“Living an Obstacle Course”: A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome

Psychological Well-Being of Mothers and Siblings in Families of Girls and Women with Rett Syndrome

Quantification of functional abilities in Rett syndrome: a comparison between stages III and IV

Contact Info

Product

Resources

About