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 in which parental care-giving is found very stressful. Limited qualitative research is found on their care-giving experiences. This study aimed to explore Chinese parents' experiences of care-giving to a child with ADHD at home. It was conducted at one Child and Adolescent Mental Health Unit in Hong Kong using qualitative exploratory approach. A purposive sample of 12 parents was recruited. Semi-structured interviews were conducted, each lasting about one hour. Content analysis was used to analyze the data. From the interview data, four themes were identified, including: concept of the illness, barriers to child care in ADHD, psychological effects in care-giving, and positive aspects of care-giving. The parents indicated a variety of life problems and health concerns in care-giving. The findings may help nurses understand the perceptions and barriers towards parental care of a child with ADHD in a Chinese population and consider parents' educational needs in care-giving.
Keywords: parents; care-giving experiences; qualitative exploratory design; attention deficit hyperactivity disorder
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). …