Parents' Perceptions of Care-Giving to a Child with Attention Deficit Hyperactivity Disorder: An Exploratory Study
Ho, Sze-Wan Carol, Chien, Wai Tong, Wang, Li-Qun, Contemporary Nurse : a Journal for the Australian Nursing Profession
Attention deficit hyperactivity disorder (ADHD) is the most common neurobehavioral childhood disorder among the most prevalent of chronic health conditions affecting school-aged children. The core symptoms of ADHD, including inattention, hyperactivity, and/or impulsivity, manifest the child with difficulties following through on rules and instructions, resulting in greater behavioral and developmental disorganization (DuPaul, Power, Anastopoulos, & Reil, 1998), excessive fidgety and difficulty in playing quietly (American Psychiatric Association, 2000). These difficulties often contribute to behavioral problems such as acting rashly without giving judgment or consideration (Barkley, Edwards, Laneri, Fletcher, & Metevia, 2001), which may be excessive, long-term and pervasive.
Establishing the diagnosis of ADHD in children is a many-sided endeavor. Recommended approaches include the use of clinical interviews, extensive history taking, parents' and teachers' observation and ratings on measuring scales, psychological testing (e.g., intelligence and personality tests) and direct observation (Dulcan & Benson, 1997). However, there is no independent valid test for ADHD (American Psychiatric Association, 2000). Therefore, information obtained from multiple informants across different settings is imperative.
Recent literature has indicated that children with ADHD often present a lot of difficulties in learning and normal social activities due to their noticeable and unacceptable behaviors and unable to follow instructions and rules in social settings such as school, tutorial and interest classes (Conlon, Strassle, Vinh, & Trout, 2008; Cunningham, 2007). Family members, especially parents, are the first line caregivers of these children and are found to have experienced extremely high burden and hardship in the caring process. A few studies exploring the stressors and coping with care-giving, their associated factors, and behavioral training program paradigms for families of a child with ADHD using quantitative, descriptive approaches (e.g., Buschgens et al., 2009; Chronis, Chacko, Fabiano, Wymbs, & Pelham, 2004; Podolski & Nigg, 2001). However, there are limited indepth exploration and understanding about the parents' perceptions and difficulties encountered in the process of care-giving (Firmin & Philips, 2009), particularly among Chinese and Asian populations. To bridge this knowledge gap, this study was to explore Chinese parents' perceptions towards care-giving to a child with ADHD resided at home with an in-depth, face-to-face interview.
The prevalence of ADHD in Western countries varies from 0.5 to 26% as suggested by the epidemiological study of Blew and Kenny (2006), with more boys affected than girls as suggested by American Psychiatric Association (2000). In Hong Kong, Leung et al. (1996) conducted an epidemiological survey of 3,069 Chinese boys in 112 primary schools with support from Education Department of the Government. They reported that ADHD had a considerable high prevalence rate of 8.9% in Hong Kong Chinese population. As suggested by Blew and Kenny (2006), it is essential to explore and describe the stress and health needs of parents due to care- giving in order to fill up one of the neglected areas of ADHD care.
Parents' role in care-giving to a child with ADHD
As ADHD is mainly defined by observable behaviors but not by blood test or brain wave analysis, parents play a crucial role in identification, diagnosis and treatment process (Timimi, 2005). However, the perceptions towards the needs for healthcare services may differ between family caregivers and health professionals (Bussing, Zima, Gary, & Garvan, 2003). Parents whose children have been diagnosed ADHD are often confused with unfamiliar medical terms and treatment choices and yet their experiences and needs have rarely been looked into (Starke & Moller, 2002; Wendell, 1996). …