Care demands on mothers caring for a child with Down syndrome: Malaysian (Sarawak) mothers' perspectives

Abstract

This paper examines the experiences of mothers caring for a child with Down syndrome in the Malaysian (Sarawak) context. Qualitative interviews were conducted with 26 biological mothers of children with Down syndrome aged 18 years and below. They were accessed through selected child health clinics, community-based rehabilitation centres and schools using purposive sampling within two regions in Sarawak, one of the two Borneo States of Malaysia. Major themes emerging within the context of care demands were children's health, developmental delays, daily needs and behaviour issues. The insights obtained into the care demands experienced by mothers of children with Down syndrome have several implications for practice by care professionals.

Perceived parenting style and mother’s behavior in maintaining dental health of children with Down syndrome

“…Girls with Down syndrome could not use pads at all, they could only stare at blood stains on pants. 19 Respondents strongly agree that they feel happy when children with Down syndrome could speak a few words that are understandable by anyone. Many mothers of children with Down syndrome feel very happy when their children could speak a few words that are understandable by anyone.…”

“…In a qualitative study, it had been found that there was a Chinese mother trying to increase learning potential of her child that born with Down syndrome, as her child experienced delay in learning. 19 In addition to perceived maternal responsiveness style in children with Down syndrome, it was also found in respondents answers which still applied perceived parenting demandingness. Perceived parenting demandingness is a perception that describes standards set by parents are related to parental control of child's behavior.…”

“…Assessment of perceived maternal responsiveness was based on four dimensions included communication, support promotion, expressing affection and harmony in the motherchild relationship. 12,13,19 Meanwhile assessment of maternal demandingness was based on three dimension included monitoring, demandingness, and control of children's behavior. Assessment of mother's behavior in maintaining dental health of children aged 7-13 years with Down syndrome was based on questionnaire instrument of Chand et al 20 Answers for each statement item about mother's perception of children with Down syndrome shown by options "strongly agree, agree, disagree, strongly disagree".…”

“…Composition of each item in questionnaire of perceived parental responsiveness and demandingness was adopted from perception of parenting questionnaire; mothers'perspectives; 19 Maternal perceptions to openended questions about life with Down syndrome in Korea;…”

Interação mãe/pai-criança com síndrome de Down: revisão sistemática da literatura

“…A interação pais 1 -criança assume fundamental importância especialmente na primeira infância, período que compreende dos 0 aos 6 anos (Arpini et al, 2015;Seidlde-Moura et al, 2004;Wendland, 2001). Esse investimento inicial, por vezes, é dificultado frente à descoberta de um diagnóstico de deficiência (Chan et al, 2015;Dezoti et al, 2015). Em função disso, o cuidado de crianças com deficiência pode ser acompanhado de alto nível de estresse parental (Chan et al, 2015;Goff et al, 2016;Smith et al, 2014), o que torna o suporte social fundamental nesse contexto (Dezoti et al, 2015; Grisante e Aiello, 2012; Yamashiro e Matsukura, 2014).…”