The experience of parents of children in their middle childhood years with Attention Deficit Hyperactivity Disorder: a resilience perspective

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Abstract

Attention Deficit Hyperactivity Disorder (ADHD) is characterised by an ongoing pattern of inattention and/or hyperactivity-impulsivity with a negative impact on daily functioning and development. Statistics indicate that an increasing number of children, as well as children in their middle childhood years, are affected by this condition. A “child” is defined by the Children's Act 38 of 2005 as a person under the age of eighteen years. The middle childhood years range from six to twelve years old. Children with ADHD in their middle childhood years require unique support with the mastering of various age-specific developmental tasks, which places additional pressure and stress on parents already faced with the normal demands of parenthood.

This explorative study is approached from a resilience perspective. There are many definitions of and opinions on resilience, but for the purposes of this study it is defined as follows: the experience of well-being, despite challenging circumstances, by interaction with the environment and by accessing the necessary resources to achieve this. The rationale is that when a deeper understanding is gained of the experience of parents with children in their middle childhood years with ADHD, any interventions for this context can be more effectively planned.

In light of the above, the premise of Amartya Sen’s Capability Theory serves as a theoretical framework for this research. Although this theory is aimed mainly at differentiating between the level of capability and the level of functioning among persons with disabilities, it is also useful in understanding possible causes of disability, and by extension, in understanding ADHD. In this study the theory is used to identify individual determinants, resources, social determinants and factors of resilience in order to find answers to the research questions, namely: What is the experience of parents who have children with ADHD in their middle childhood years? and What are the determinants for the actualisation of resilient parenthood in the context of children with ADHD in their middle childhood years?

The research plan comprises an exploratory narrative case study. Twenty-one parents of middle childhood age children with ADHD participated in this study. The data was generated primarily through semi-structured interviews conducted over the course of two months. Field notes made during interviews, participants’ journal entries, and reflective journal entries supplemented the data. This data was processed using thematic analysis and an intra-comparison of themes. The research meets the ethical requirements of the Health Professions Council of South Africa (HPCSA) and ethical guidelines were very strictly followed to respect participants’ rights to dignified treatment. Participants signed permission and consent forms to ensure anonymity, the confidential treatment of personal information and voluntary participation in the study. All information gathered was treated confidentially and anonymously and data was safely stored.

A thematic analysis of the data yielded six themes, namely: (1) parents’ experiences during the diagnosis and treatment process; (2) common feelings and emotions experienced by parents; (3) the influence of ADHD on the family dynamic; (4) the influence of a school system; (5) the value of a support system; and (6) society’s perception of ADHD. These findings were summarised in a diagrammatic representation which illustrates some of the determinants and obstacles to resilience, as well as other related processes. In summary, the determinants of participants’ resilience identified in this research include: a positive attitude and strict routine at home, time and experience in adapting to the condition, and support provided by family, staff of special needs schools, and parents of other middle childhood age children with ADHD. In opposition to this, societal ignorance is found to be the largest obstacle inhibiting the actualisation of resilient parenthood, which seems to correspond with people’s critique and prejudice, the exclusion of children with ADHD as experienced in mainstream schools, and the stigma associated with the use of medication for ADHD and with the placement of children with this condition in special needs schools. Arising from this is the argument that creating awareness of ADHD can equip society with the information it needs to have a better understanding of parents’ experiences of this condition. This can lead to an increase in the support offered to parents of children with ADHD and thereby possibly promote the resilience of parents with middle childhood age children with ADHD. Therefore one can argue that it is the responsibility of all parents of children with ADHD, but also of the larger population, to empower themselves with information on ADHD, thus advancing the awareness of this condition.

This exploratory study makes contributions on a theoretical, practical professional, and policy level. On a theoretical level, the determinants of resilience are explained within the framework of capability theory. This in itself makes an important contribution to the literature on the subject, as it includes recommendations for the promotion of resilience among parents of middle childhood age children with ADHD. On a practical level a significant amount of knowledge was gained around parents’ experience in this context and therefore educational psychologists can now use this study as a basis when offering support to parents in similar situations. Recommendations were also made on a policy level, in order for policies and guidelines to be outlined or put in place that will promote the actualisation of resilience among parents of children with ADHD in their middle childhood years. Teachers and other support staff may, for example, find it valuable when SIAS (policy on screening, identification, assessment and support) is used for the assessment and planning of intervention for children with ADHD.

Against the backdrop of existing literature on the subject of resilience, this is also the first study in South Africa that explores the experience and actualisation of resilience among parents of middle childhood age children with ADHD. For example, various participants from low socio-economic circumstances shared their experiences, shedding light on a prevalent reality in South Africa. In this manner, the research also makes valuable contributions to the literature on resilience among parents of middle childhood age children with ADHD in a South African context.

Keywords: Attention Deficit Hyperactivity Disorder (ADHD); middle childhood years; obstacles; parenthood; resilience; resources

Lees die volledige artikel in Afrikaans: Ouers van kinders in hulle middelkinderjare met aandagtekort- en hiperaktiwiteitsversteuring se belewing: ’n veerkragtigheidsperspektief

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