Authors
- Laugesen, Britt RN, MScN
- Gronkjaer, Mette RN, MNg, PhD
Abstract
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.
Article Content
Inclusion criteria
Types of participants
This review will consider studies that include parents living with a child with ADHD. For the purpose of the review, the definition of parents will be biological parents or persons with parental rights of the child. To investigate the phenomena of interest, the review will include studies examining the experiences of both mothers and fathers or single parents. Studies will be excluded if they examine other disorders or diseases than ADHD. In this review, a child is defined as a child or an adolescent living at home aged between five and 18 years. There will be no limits with regards to ADHD diagnostic criteria, as it is not the phenomena of interest in this study.
Phenomena of interest
The phenomena of interest are parenting experiences of living with a child with ADHD to understand how the child's disorder affects family life. The phenomena of interest are also parenting experiences of ADHD health care services both in and outside of hospital settings and their experience of collaboration with professionals. Studies will be included if they entail parenting experiences of children already diagnosed with ADHD. Studies will be excluded if they investigate children who are not yet diagnosed with ADHD or children whose primary disease or disorder is not ADHD. Parenting attitudes to the ADHD diagnosis and parenting experiences with the time before their child's diagnosis will also be excluded. The objective is not to investigate ADHD medication. Therefore, studies will be excluded if their focus is entirely on attitudes towards ADHD medication.
Types of studies
This review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research.
In the absence of research articles, other text such as opinion papers, dissertations and reports will be considered.
Search strategy
The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of PubMed, Embase, PsycINFO and CINAHL will be undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies and a search for cited citations in Web of Science will be performed. Studies published in Danish, Swedish, Norwegian and English will be considered for inclusion in this review. Databases will be searched from their inception to August 2014.
The databases to be searched include:
PubMed, CINAHL, Embase, and PsycINFO.
The search for unpublished studies will include:
MedNar, ProQuest Dissertations and Theses,
http://www.ADHD.dk (The Danish ADHD Society),
http://www.adhdnorge.no (The Norwegian ADHD Society),
http://www.attention-riks.se (The Swedish ADHD Society),
http://www.adhdeuroe.net (ADHD Europe),
http://www.psych.org (The American Psychiatric Association).
Initial keywords to be used will be:
Attention deficit hyperactivity disorder,, ADHD,, children, adolescents, parents, mother, father, family, psychosocial factors, life impairment, life experiences, attitude to life, life change events, parents psychosocial factors, experience, attitude, perception, perspective, daily life, family life.
Assessment of methodological quality
Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix V). Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer.
In the absence of research articles, papers selected for retrieval will be assessed by two independent reviewers for authenticity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Narrative, Opinion and Text Assessment and Review Instrument (JBI-NOTARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer.
Data collection
Data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review question and specific objectives.
In the absence of research articles, data will be extracted from papers included in the review using the standardized data extraction tool from JBI-NOTARI (Appendix II). The data extracted will include specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review question and specific objectives.
Data synthesis
Qualitative research findings will, where possible be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form.
In the absence of research studies, textual data will, where possible be pooled using JBI-NOTARI. This will involve the aggregation or syntheses of conclusions to generate a set of statements that represent that aggregation, through assembling and categorizing these conclusions on the basis of similarity in meaning. These categories will then be subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the conclusions will be presented in narrative form.
Conflicts of interest
The authors have no conflicts of interest to declare.
References
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Appendix I: Appraisal instruments
QARI appraisal instrument[Context Link]
Appendix II: Data extraction instruments
QARI data extraction instrument[Context Link]
Keywords: Attention deficit hyperactive disorder; ADHD; children; adolescents; family; parents; psychosocial factors; health beliefs; daily life; family life; life impairment; health care professionals; experiences; attitudes; perspectives; qualitative meta-synthesis.