Affecting about 3-10% of all children, ADHD is among the most frequently occurring Mental Health Childhood Disorders. The methodology utilized in the study is systematic literature review. Research articles were searched from two online data bases that is, Medline and Ovid. The objectives of the review center around three aspects related to the mothers of children who have been diagnosed with ADHD. The review focuses on one describing the variety of stresses experienced by mothers after having their children diagnosed with ADHD. More importantly, it illuminates the policies and procedures available to support these mothers specifically in regard to social and financial support. Finally, it details and discusses evidence based coping strategies that have been found to be effective amongst these mothers.
Abbreviations: PEP (Prevention Program for Externalizing Problem Behavior); ADHD (Attention Deficit and Hyperactivity Disorder); AAP (American Academy of Pediatrics); COPE (Coping Orientation to Problem Experienced); PSI (Parenting Stress Index).
ADHD is a childhood disorder which has an early onset and which is among the common mental health disorders affecting children with a prevalence rate of 3-10% (Hanisch et al, 2010). It is characterized by hyperactivity, impulsivity and symptoms of inattention that are not developmentally appropriate (Chang, 2009). ADHD produces significant impairments in the affected children’s social interactions, school performance, and performance of other daily activities as well as in their self-esteem (Durukan et al., 2008). The behavioral characteristics of affected children have been shown to affect mothers in an overt way and have especially been attributed with increasing distress in mothers (Hautmann et al., 2009). A variety of studies, both cross-sectional and long-term have explored the issue of parental stress with others have specifically focused on maternal stress following the diagnosis of their children with ADHD.
Various psychological tools for evaluation of stress have been utilized in these studies. They include the Coping Orientation to Problem Experienced (COPE) scale developed by Weintraub, Carver and Scheier, parenting stress index (PSI) by Abidin and Santos (2003) and EMBU-P by Cannavaro and Pereira (2007) amongst others. Diagnosis of ADHD is based on the DSM-IV criteria, the Australian Disruptive Behaviors Scale amongst others (Durukan et al., 2008). The fact that mothers are the primary care takers of affected children in majority of the cases has potentiated the need to explore the coping strategies utilized by these mothers (Segal, 2000). Policies and procedures aimed at providing support to affected children and their mothers also need to be evaluated (Zima et al., 2010).
This review aims at identifying the variety of stresses that mothers go through when their child is diagnosed with ADHD. Further, it aims at evaluating the policies and procedures available to help mothers cope with having a child diagnosed with ADHD. The final aim is to identify evidence based strategies on how mothers can cope with having children who have been diagnosed as having ADHD.
The study was a systematic literature review that encompassed information from a number of studies conducted in different countries. Two electronic data bases were selected for the literature review, that is, Medline and Ovid. The two databases were searched in the month of April 2011. Search terms were selected based on the research topic and refined on the basis of findings of a pilot test. They included ADHD, PEP, mothers, coping strategies, policy and procedures.
Abstracts to all articles were read to establish the relevance of their content to the topic under study. Articles that were found to be irrelevant to the topic were also not selected for inclusion into the review. Studies on non-target populations were also excluded from the review. 39 full articles were selected and downloaded of which 15 were reviewed; 3 from Ovid and 12 from Medline. Content from the 15 articles were abstracted and organized into categories. They were further analyzed via qualitative synthesis. A methodological quality screen was not applied. Conversely, the results are accepted as reported by the authors.
Maternal stress following the diagnosis of a child with ADHD
A study by Lin et al. (2002) established that the maternal stress for a random sample of these mothers was 62.00 on the PSI. Notably, the behavioral characteristics of children suffering from ADHD were found to be highly correlated with maternal stress (p.001). Findings to studies by Pimentel et al. (2010) and Deault (2010) also concur that mothers often report that they are stressed because they simply do not know how to deal with the impulsive and aggressive behavior exhibited by their children. Behavioral characteristics of these children more often than not elicit feelings of parental inadequacy which is a source of stress to the mother (Deault, 2010).
Studies have also established that the subtype of ADHD which a child is suffering from is also strongly correlated to maternal stress. One such study by Yang et al (2007, pp.369-375) concluded that mothers of children with the combined sub-type of ADHD reported higher parenting stress and had higher scores on the parenting stress index (PSI) than those with children with the other sub-types of ADHD. In essence therefore, not only has the mother to deal with the stress related to the behaviors exhibited by her child but she also has to cope with the stress related to the subtype and hence the severity of her child’s condition.
Amongst the family characteristics highly correlated with the development of ADHD is parental stress and maternal psychopathology. Parental stress is further attributed to disruptions in child-parent relations and reduced parenting self-efficacy (Johnston et al., 2001, pp.183-207; Deault (2010, p.172). The mother in such cases has to contend with stress related to self guilt that she could have possibly contributed in the development of the condition in her child (Johnston et al., 2001). Further, she has to handle the stress related to friends and relatives who may blame her for her child’s condition (Deault, 2010). Findings by the Lin et al. (2002) study retaliate that the parent’s self-awareness of their own psychological and emotional problems exacerbate the mother’s stress levels following the diagnosis of a child with ADHD.
Findings of a study by Chang (2009) posit that the traditional concept of motherhood that tends to label these mothers as failures is also a major stressor for mothers whose children have been diagnosed with ADHD. Regression analysis of data from the study indicated that two domains of parental stress that is parental distress and dysfunctional parent-child relations were best explained by the concept of motherhood held as opposed to a child’s behavioral characteristics (to the power of R2=.172 and .281).
Another stressor cited by Norvitilitis et al. (2002) for these mothers is the stigma they perceive as being associated with ADHD otherwise known as courtesy stigma. These mothers perceive stigma and hence tend to isolate themselves despite findings by the Norvitilitis et al. (2002) study that indicated that contrary to expectations, mothers whose children did not have ADHD did not harbor any harsh views about ADHD and felt no need to isolate the mothers whose children had been diagnosed with the condition.
The financial implication of the diagnosis of a child with ADHD is another variable that significantly contributes to maternal stress (Baker, 2004; Segal, 2000).ADHD requires long-term comprehensive management (Durukan et al., 2008) which may prove costly to some mothers.
Policies and procedures on ADHD
In the US, Medicaid covers more than a third of the total national costs for mental health disorders in children. Further, federal policies require Medicaid to provide Specialty Mental Health Services with reimbursements that deal with conditions like ADHD. Moreover, the Patient Protection and Affordable Care Act enacted in 2010 expanded the coverage of Medicaid to children who were previously uninsured (Zima et al, 2010). Insurance cover therefore potentially limits the financial repercussions of the condition on the children’s parents.
Guidelines by the AAP on the diagnosis and subsequent management of children suffering from ADHD engender a collaborative approach that integrates inputs from the child’s parents, teachers, school counselors and nurses and community mental health practitioners. The community process resulting from the collaborative approach provides support to the mothers by shouldering some of the responsibilities in the management of the child with ADHD (Foy et al., 2005).
National guidelines on ADHD have prioritized the aspect of shared decision making in the diagnosis and management of ADHD which besides incorporating the parents’ perspectives in the process fosters support to parents by medical professions in the parents’ social networks (Fiks et al., 2011).
Effective coping strategies for mothers
Only a limited number of studies have focused on the aspect of effective coping strategies for mothers having children who have been diagnosed with ADHD. Majority of studies tend to accentuate more on the identification of coping strategies that have been found to be ineffective like substance abuse. Use of denial as coping strategy for dealing with stress in adults was described by Levine et al. (1987) who pointed out that its use was not only necessary but had been proven effective in the early stages following a diagnosis. Moreover, they proposed that it has the added benefit of freeing resources for the mother to cope with the diagnosis (as cited in Durukan et al. 2008, p.221).
Positive reframing on the other hand was found to be an effective coping strategy by Pololski et al (2001) for parents whose children have been diagnosed with ADHD. Positive reframing entails the redefinition of stressful experiences in a more positive and realistic manner. Utilization of this strategy had a significant impact on two variables of the study; the disruptive behaviors of the child and parenting stress both of which decreased (Pololski et al., 2001).
A study by Segal (2000, p.304) aimed at describing the various time coping strategies adopted by mothers whose children had been diagnosed with ADHD concluded that mothers tend to use three main types of adoptive strategies to manage their time, that is, unfolding occupations which can either be temporary or inclusive and enfolding occupations. Enfolding occupations simply imply that the mother is engaged in more than one occupation at any time. Inclusion unfolding occupations entail delegating tasks previously performed by the mother to another person. In temporal unfolding, the mother reorganizes the sequence by which she used to perform her tasks such that certain activities end up being performed at another time (Segal, 2000, p.305).
Equipping the mothers with the appropriate knowledge and skills is one of the coping strategies that have been explored in numerous studies. PEP, a program for training parents whose children have externalizing behavior problems was found to be effective in improving the child’s disruptive behavioral problems as well as parental practices (Hanisch et al, 2010; Hautmann et al., 2009). The primary aim of PEP is to increase parental competency in handling a child’s disruptive behaviors (Hautmann et al., 2009). The efficacy of PEP has been evaluated under two contexts; a trial study by Hanisch et al., (2010) and 1-year follow up study of its application under real life situations by Hautmann et al. (2009).
Innumerable studies have identified the variety of stress that a mother whose child is diagnosed with ADHD experiences. Stress in these mothers is related to the disruptive behaviors exhibited by their children, financial implications of the condition, the traditional motherhood concept as well as the sense of guilt that comes with the realization that she as the mother could have possibly contributed to the development of the condition in the child. Stress in these mothers is also related to other stressors that existed prior to the diagnosis, the stigma associated with the condition as well as the subtype of ADHD.
Medicaid insurance covers most of the costs of treatment for children with ADHD in the U.S. Enactment of the Patient Protection and Affordable Care Act will also ensure that children who were previously not covered by Medicaid are covered which potentially decreases the financial costs of the condition to the mothers. Other national policies on ADHD facilitate the processes of shared decision making and community approach to the diagnosis and management of ADHD all which foster social support to the mothers.
Positive reframing, denial, time coping strategies via participating in enfolding and unfolding occupations and training to acquire the skills, knowledge necessary to effectively cope with having a child diagnosed with ADHD are some of the evidence based coping strategies utilized by these mothers.
Baker, D.B. (2004). Parenting stress and ADHD: A comparison of mothers and fathers. Journal of Emotional and Behavioral Disorders, 25(4), 46-50.
Chang, Y. (2009). How motherhood perception of the mothers who have ADHD children affects their parenting stress. Journal of Family Psychology, 21(4), 584-594.
Deault,L.C. (2010). A systematic review of parenting in relation to the development of comorbidities and functional impairments in children with attention-deficit/hyperactivity disorder (ADHD). Child Psychiatry and Human Development, 41(2), 168-192.
Durukan, I., Erdem, M., Tufan, A.E., Congologlu, A., Yorbik, O. & Turkbay, T. (2008). Depression and anxiety levels and coping strategies used by mothers of children with ADHD: a preliminary study. Anatolian Journal of Psychiatry, 9, 217-223.
Fiks, A.G., Hughes, C.C., Gafen, A., Guevara, J.P., & Barg, F.K. (2011). Contrasting parents’ and pediatricians’ perspectives on shared decision-making in ADHD. Pediatrics, 127(1), 188-196.
Foy, J.M. & Earls, M.F. (2005). A process for developing community consensus regarding the diagnosis and management of attention-deficit/hyperactivity disorder. Pediatrics, 115(1), 97-104.
Hanisch, C., Freund-Braier, I., Hautmann, C., Jäne, N., Plück, J., Brix, G., Eichelberger, I. & Döpfner, M. (2010). Detecting effects of the indicated prevention Programme for Externalizing Problem behaviour (PEP) on child symptoms, parenting, and parental quality of life in a randomized controlled trial. Behavior and Cognitive Psychotherapy, 38(1), 95-112.
Hautmann, C., Hoijtink, H., Eichelberger, I., Hanisch, C., Plück, J., Walter, D. & Döpfner, M. (2009). One-year follow-up of a parent management training for children with externalizing behaviour problems in the real world. Behavioral and Cognitive psychotherapy, 37 (4), 379-396.
Johnston, C. & Mash, E.J. (2001). Families of children with attention-deficit/hyperactivity disorder: review and recommendations for future research. Clinical Child and Family Psychology Review, 4(3), 183-207.
Lin, Y.F. & Chung, H.H. (2002). Parenting stress and parents’ willingness to accept treatment in relation to behavioral problems of children with attention-deficit hyperactive disorder. The Journal of Nursing Research, 10(1), 43-56.
Norvitillis, J.M., Scime, M. &Lee, J.S. (2002). Courtesy stigma in mothers of children with Attention Deficit/Hyperactivity Disorder: A preliminary investigation. Journal of Attention Disorders, 6(2), 61-88.
Pololski, C.L., & Nigg, J.T. (2001). Parent stress and coping in relation to child ADHD severity of associated child disruptive behavior problems. Journal of Clinical Child Psychology, 30, 503-513.
Segal, R. (2000). Adaptive strategies of mothers with children with attention deficit hyperactivity disorder: enfolding and unfolding occupations. American Journal of Occupational Therapy, 54(3), 300-306.
Yang, P., Jong, Y.J., Hsu, H.Y. & Tsai, J.H. (2007). Psychiatric features and parenting stress profiles of subtypes of attention-deficit/hyperactivity disorder: results from a clinically referred Taiwanese sample. Journal of Development and Behavioral Pediatrics, 28(5), 369-375.
Zima, B.T., Bussing, R., Tang, L., Zhang, L., Ettner, S., Belin, T.R. & Wells, K.B. (2010). Quality of care for childhood Attention-Deficit/Hyperactivity Disorder in a managed care Medicaid program. Journal of the American Academy of Child and Adolescent Psychiatry, 49(12), 1225-1237.