Coping with a Child with Down Syndrome: The Experiences of Mothers in Hong Kong

Abstract

Chinese mothers' experiences of parenting a child with Down syndrome were explored through semistructured interviews with 18 key informants selected by purposive sampling. Seven major themes were identified: unexpected birth of an abnormal child, acceptance of the child, special needs of the child, worry about the future, knowledge deficit, effect on the marital relationship, and social restrictions. The types of stressors changed over time according to the child's age, and coping strategies varied accordingly. Strategies frequently used were avoidance, self-reliance, and seeking social support. The particular problems faced by mothers of children with Down syndrome in Hong Kong were discussed in view of the sociocultural background of the region and the highly competitive nature of its society.

The Described Experience of Primary Caregivers of Children With Mental Health Needs

“…Similarly, our caregivers reported they were concerned about their own safety and that of others in the home and in the schools. The theme of worrying about the rest of the family is consistent with findings from previous studies in which caregivers shared concerns about the impact that the child's mental health needs had on the family (Lam & Mackenzie, 2002;Lefley, 1997;Lovenfosse & Viney, 1999). Also, the theme of being burdened and exhausted resonated with findings from other research studies (Goldberg-Arnold et al, 1999;Peters & Jackson, 2009;Scharer, 2002) in which caregivers reported being socially isolated due to caregiving demands, giving up employment in order to cope with their children's needs, and having multiple mental health appointments and calls from schools because of behavioral problems (Nelson, 2002;Peters & Jackson, 2009;Smith & Smith, 2000;Yantzi et al, 2006).…”

“…Caregivers of children with ADHD and ASD report experiencing intense emotions and a sense of a loss of control related to the nature of their children's symptoms and behaviors, delays in receiving a diagnosis, and conflicting diagnostic opinions from health-care professionals (Lam & Mackenzie, 2002;Nelson, 2002). They experience an urgent need for timely, accurate, and complete information regarding their child's illness and need the information to be repeated a number of times (Scharer, 2002).…”

“…These parents desire support from both professionals and other parents with similar experiences (Lovenfosse & Viney, 1999;Scharer, 2002). The caregivers of children with ADHD and ASD often share a mistrust of a health care system that they find to be insensitive, negative, and uncaring towards their child, although some also experience gratitude for individual professionals who provide support and take time to listen to them (Lam & Mackenzie, 2002;Lutenbacher, Karp, Ajero, Howe, & Williams, 2005). However, as mentioned, there is limited information about the experience of primary caregivers of children with mental health needs other than ADHD and ASD.…”

Perceived stress, ego-resiliency, and relational resources as predictors of psychological well-being in parents of children with Down syndrome

“…The meaning of social support for psychological well-being and adaptation process of mothers is compatible with reports by many researchers (e.g. Lam & Mackenzie, 2002;Hallberg, 2014). Where social support from family and friends is important for mothers, inner resources (ego-resiliency) generate a major base for fathers.…”

“…Pisula (2007a) indicates that what parents of children with Down syndrome appreciate the most are, besides financial resources, help from their family members, specialists, and other parents of children with disabilities. As a coping strategy, mothers of children with Down syndrome most frequently seek social support (Lam & Mackenzie, 2002). On the other hand, fathers participate in group social support forms to a lower degree than mothers (West, 1998); they prefer when support is designed both for them and their wives (Turbiville & Marquis, 2001).…”