Caregivers’ perceptions and experience of caring for persons with Down syndrome in Kuwait: a qualitative study

Alshatti, Amna; AlKandari, Dana; Almutairi, Hessa; AlEbrahim, Dalal; AL‐Mutairi, Abdullah; AlAnsari, Danah; Abduljaleel, Lulwa; AlEnzi, Hassna; AlFoudari, Latifa; AlShaib, Hamad; AlAzmi, Khalid; Ahmed, Jamil

doi:10.1080/20473869.2021.1910780

Cited by 7 publications

(10 citation statements)

References 31 publications

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“…[ 9 ] Other factors such as inadequately trained staff, lack of assessment tools, and poor communication between the family and the service providers also contributed to the parents’ preferences. [ 10 11 ] However, the main reasons for the parents not bringing their children with intellectual disabilities to healthcare facilities were unaware of the existence of services, financial problems, and difficulties in bringing their children because of their behavior. [ 11 ]…”

Section: Introductionmentioning

confidence: 99%

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Perceptions toward healthcare and dental care services among parents and caretakers of people with intellectual disability (PWID)—A questionnaire study

Said¹,

Mohd²,

Naji³

2023

J Int Soc Prevent Communit Dent

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A BSTRACT Aim and Objective: In Malaysia, there was lack of local evidence on the perception of parents/caretakers of people with intellectual disabilities (PWID) about healthcare. Thus, this study aims to assess the perceptions toward healthcare services of parents or caretakers for PWID. Materials and Methods: Online survey using Google Forms was conducted on parents/caretakers of PWID who attended the special care dentistry clinic and special community centers in Kuantan, Pahang. A questionnaire was developed for data collection. Cronbach alpha was conducted to measure the reliability. Content and face validation was performed to establish the validity. Data entry and analysis were done using IBM statistical package for social sciences (SPSS) version 24. This study only involved univariate (descriptive) data analysis in which categorical data were summarized in actual numbers and percentages. Results: The respondents’ perceptions toward healthcare access and services were reasonably good; about 50% disagreed and strongly disagreed on having difficulty accessing healthcare facilities. 65% and 55% of parents/caretakers brought PWID for regular health and dental checkups. The majority agreed and strongly agreed (about 73%) that healthcare staff gave equal services and good support and showed positive attitudes toward PWID under their care. Insufficient healthcare information and below-par communication skills remained the main barriers faced by the parents/caretakers of PWID. About 13% of the respondents reported experiencing discrimination in receiving health and dental services for PWID under their care. The Cronbach alpha scores for sections 2 and 4 were 0.892 and 0.681, respectively. Conclusion: Most of the respondents felt that Malaysia’s healthcare services for PWID were fairly good. However, it was intriguing to find that some still experienced discrimination. This shows that education about intellectual disability is salient for healthcare workers and should be embedded in the current curriculum.

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Section: Introductionmentioning

confidence: 99%

“…[ 10 11 ] However, the main reasons for the parents not bringing their children with intellectual disabilities to healthcare facilities were unaware of the existence of services, financial problems, and difficulties in bringing their children because of their behavior. [ 11 ]…”

Section: Introductionmentioning

confidence: 99%

Perceptions toward healthcare and dental care services among parents and caretakers of people with intellectual disability (PWID)—A questionnaire study

Said¹,

Mohd²,

Naji³

2023

J Int Soc Prevent Communit Dent

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“…Coping is the active cognitive and behavioural effort to manage specific external and/or internal demands appraised as taxing or exceeding a person's resources by an individual (Lazarus & Folkman, 1984). Although numerous published studies have focused on the challenges and negative experiences of the parents of children with Down syndrome (AlShatti et al, 2021; Barr et al, 2016; Barros et al, 2017; Lam & Mackenzie, 2002; Marshall et al, 2015; Povee et al, 2012), studies exploring the positive coping strategies used by parents are limited. Furthermore, our current understanding of coping strategies is based on data from Western countries (Braga et al, 2021; Cuskelly et al, 2009; King et al, 2009; van der Veek et al, 2009a,b), and data from non‐Western countries is few (Darla & Bhat, 2021; Gashmard et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

“…with Down syndrome (AlShatti et al, 2021;Barr et al, 2016;Barros et al, 2017;Lam & Mackenzie, 2002;Marshall et al, 2015;Povee et al, 2012), studies exploring the positive coping strategies used by parents are limited. Furthermore, our current understanding of coping strategies is based on data from Western countries (Braga et al, 2021;Cuskelly et al, 2009;King et al, 2009;van der Veek et al, 2009a,b), and data from non-Western countries is few (Darla & Bhat, 2021;Gashmard et al, 2020).…”

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confidence: 99%

Stressful experiences and coping strategies of parents of young children with Down syndrome: A qualitative study

Çelik

Uzun

2023

Research Intellect Disabil

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Background: Previous studies have focused mostly on the negative experiences of parents of children with Down syndrome. We aimed to explore both the stressful experiences and coping strategies of parents from a non-Western country.Methods: Twenty-six parents of children aged 8-48 months with Down syndrome were included. Semi-structured interviews were conducted, and the data were analysed using thematic analysis. Results:The main themes of the stressful experiences were emotional burdens, caregiving burdens, struggle against stigma and discrimination, concerns about the future, challenges related to health, education, and financial issues. Parents used a variety of coping strategies to overcome the challenges by seeking support and help, searching for information, accepting and adapting, and adopting optimistic attitudes. Conclusion:Although being a parent of a child with Down syndrome has many challenges, most parents effectively used coping strategies and adapted their lives to their new parental roles in their child's early years.children with Down syndrome, coping skills, parental adaptation, stressful experiences | BACKGROUNDHaving a child with Down syndrome can be a stressful journey for most families, beginning with the child's diagnosis (Gupta, 2007;Nelson Goff et al., 2013;Oelofsen & Richardson, 2006). Children with Down syndrome have varying degrees of developmental and behavioural difficulties. Many children also suffer from a wide range of health problems, such as congenital heart disease, gastrointestinal malformations, and respiratory infections. Their greater need for supervision and increased health and education demands can have a profound impact on the functioning and well-being of the family (Nelson Goff et al., 2013;Oelofsen & Richardson, 2006;Skotko et al., 2011). Families with children with Down syndrome report higher levels of stress, greater difficulties with adjustment, and poorer coping compared to families of healthy children (Hodapp et al., 2001;

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“…People with developmental disabilities often have impairments in muscle tone and/or muscle weakness and uncoordinated movement, resulting in decreased stability and balance, and decreased ability to perform daily functional activities [2][3][4] . They also typically have other impairments, such as sensory or cognitive impairments and problems in social relationships, that are related to their ability to carry out daily functional activities [5][6][7] .…”

Section: Introductionmentioning

confidence: 99%

Functional activity and communication-social ability of youths with developmental disabilities: a qualitative study

et al. 2022

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To describe the functional activity and the communication-social ability levels of youths with developmental disabilities and to determine whether demographic factors predict these levels. [Participants and Methods] A mixed, observational and qualitative, study in which parents of students with developmental disabilities were interviewed based on the WeeFIM questions. Both quantitative and qualitative data were analysed.[Results] Data were collected for 30 youths with mild to severe developmental disabilities with mean age 18.5 ± 2.7 years (19 males). Mean WeeFIM total score was 106.2 ± 10.9, indicating relatively high functional and communication-social ability. No significant difference was observed for the total WeeFIM score between males and females and between adolescents and young adults with developmental disabilities. Main themes emerged from the interviews were: Difficulties with smooth and stable walking, transfers to/from bathtub and stairs. Also, youths are expressing a need for independence in self-care, while relationships with their peers are difficult and problems are primarily solved with help from their parents. [Conclusion] Despite the high functional and communication-social ability levels of a group of youths with developmental disabilities, parents revealed that youths had certain difficulties. Therapy should address such difficulties to promote independence and participation of these young people in the community.

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Caregivers’ perceptions and experience of caring for persons with Down syndrome in Kuwait: a qualitative study

Cited by 7 publications

References 31 publications

Perceptions toward healthcare and dental care services among parents and caretakers of people with intellectual disability (PWID)—A questionnaire study

Perceptions toward healthcare and dental care services among parents and caretakers of people with intellectual disability (PWID)—A questionnaire study

Stressful experiences and coping strategies of parents of young children with Down syndrome: A qualitative study

Functional activity and communication-social ability of youths with developmental disabilities: a qualitative study

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