Parenting experiences of living with a child with attention deficit hyperactivity disorder: a systematic review of qualitative evidence protocol

Review question/objective The objective of the systematic review is to identify and synthesize the best available evidence on how parents experience living with a child with attention deficit hyperactivity disorder (ADHD) including their experiences of ADHD health care services. The review questions are: How does living with a child with ADHD affect family life?What are the parental challenges of having a child with ADHD?How do parents experience collaboration with health care settings and professionals? Background Attention deficit hyperactivity disorder is the most prevalent mental disorder among children and adolescents worldwide, and the incidence of ADHD has increased in recent years.1 Attention deficit hyperactivity disorder in children is characterized by inattention, hyperactivity and impulsivity, and these characteristics are often present before the age of seven. The prevalence estimates for ADHD vary considerably worldwide due to demographic, cultural and socioeconomic characteristics of the population as well as the various criteria used for diagnosis. However, it is estimated that the prevalence in school children aged between five and 12 is 4-7%.2,3 Attention deficit hyperactivity disorder occurs in all socioeconomic groups, although it is more frequent in lower socioeconomic groups in society.2-4 Children with ADHD have care needs that reinforce a multimodal approach. They are often treated with medication which is supplemented with a variety of psychosocial and psycho educational interventions to improve their functioning.5 Furthermore, ADHD can be complicated by co-morbid conditions such as depression, anxiety and conduct disorders. Compared with the general population, ADHD is also associated with an increased prevalence of physical conditions including asthma, food allergy, epilepsy and severe headaches.2,8 Attention deficit hyperactive disorder often presents with challenging behavior and is associated with impairment in social, familial, emotional, academic and behavioral functioning.6,7 Attention deficit hyperactivity disorder may impact the lives of children and their families, for example, it affects practical and psychological aspects of daily life, school life and social life.6,7 The lives of families with children with ADHD can be influenced by many factors.9 Studies on parenting experiences show that parents find it challenging to raise and support the child.1,6 Findings indicate that the parents are struggling to maintain a bearable family life and to learn how to successfully handle their child.1,6 In addition, parents raising children with ADHD experience more emotional distress, stress and exhaustion than parents raising children without ADHD.1 Raising a child with ADHD also affects the families' social life as parents are worried how the child with ADHD will behave if they go on visits, holidays etc.9 Mental illness is associated with stigma, and living with a child with ADHD seems to have a significant impact on the families' experiences of stigma.10 Parenting a child with ADHD may cause experiences of social isolation, negative public views and sometimes the characteristics of the child with ADHD provoke negative reactions and intolerance from other parents or family members.9,10 Thus, the parents are concerned how society will judge a child diagnosed with ADHD, and they fear that the diagnosis may have a negative impact on their child's future opportunities.10 Although the majority of studies imply that raising a child with ADHD affects family lives negatively, studies report that the parents benefit from early identification and help and support from professionals.11 Some families develop strategies to cope with the problems related to their child's disorder.6,12 Parenting experiences of living with a child with ADHD include experiences of ADHD care and treatment.20 Children with ADHD are cared for and treated in various settings both in and outside of medical settings. Parents may be challenged by coordinating care and treatment as the diverse settings and professionals do not always tend to collaborate.14,15,20 A study estimates that as the rate of mental illness in the child population continues to increase, an extended use of collaboration with health professionals such as school psychology services, public health nursing, hospital psychiatry etc. is an important factor in providing high quality services.13 Treatment and care for children with mental health problems can involve between six to ten professionals across sectors.13 Studies reveal different perceptions regarding parents' collaboration with professionals. On one hand, parents of children with ADHD are grateful for the help and support from professionals to provide the best possible care for their children.1,4 On the other hand, parents experience barriers to treatment and care, as it is provided in diverse settings with numerous professionals involved.14,15 In addition, professionals and parents may conceptualize ADHD differently and have different perceptions of what collaboration entails.11 Studies show that parents lack directions and help from professionals to make decisions concerning medication.16-18 ADHD treatment and care may also be compromised by lack of continuity of care and if health professionals do not meet the families' individual emotional and educational needs.4,20 Family factors such as conflicts within the family and the psychopathology of the parents may also contribute to barriers in treatment and care.4,19 The literature indicates that parenting children with ADHD is influenced and challenged in different ways.1,20 However, diverse perspectives exist as how parenting a child with ADHD influences the families' daily life, how the parents manage raising the child, which factors parents find important and helpful factors and how parents experience ADHD care in diverse settings and the involvement with professionals across sectors. Studies find that the parents need more intensive support to help their child in the best possible way, and it is also recommended that professionals must be aware of the families' situations and their needs.1,11 An initial search in the databases of PubMed, CINAHL, JBIConnect+, Cochrane Library and PsycINFO showed that no systematic review on this topic exists or in progress currently. It is necessary to aggregate knowledge to further understand parenting experiences of living with a child with ADHD including their experiences of ADHD health care services to identify important and helpful factors in care and treatment. This may contribute to knowledge on how professionals can support the families in managing their situations. It may also contribute to the pertinent discussion on continuity of patient care and on how health care services ought to be organized to ensure the best possible care and treatment for children with ADHD and their parents.