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

Abstract

Attention deficit hyperactivity disorder is the most prevalent mental disorder among children and adolescents worldwide. Parenting a child with attention deficit hyperactivity disorder is challenging and parents find it difficult to raise the child and struggle to get professional support. Research has shown how living with a child with Attention Deficit Hyperactivity Disorder influences the families' daily life. This includes how the parents manage to maintain a bearable family life, supportive or not supportive factors as well as parents' experiences of collaboration with professionals in diverse settings. The objective of this systematic review was to identify and synthesize the best available evidence on parenting experiences of living with a child with attention deficit hyperactivity disorder, including their experiences of health care and other services. This review considered research articles with qualitative data examining the experiences of parents of children with attention deficit hyperactivity disorder. The phenomena of interest were parenting experiences of living with a child with attention deficit hyperactivity disorder, including their experiences of health care and other services, and collaboration with professionals. Retrospective and prospective searches were conducted in MedNar, ProQuest Dissertations and Theses, PubMed, Embase, PsycINFO and CINAHL. The reference lists of the included research articles were searched for additional studies, and a search for cited citations in Web of Science was conducted. Two independent reviewers assessed articles selected for retrieval for methodological validity prior to inclusion in the review using the standardized critical appraisal instrument from the Joanna Briggs Institute, the Qualitative Assessment and Review Instrument. Data were extracted from research articles included in the review using the standardized data extraction tool from the Qualitative Assessment and Review Instrument. Qualitative research findings were pooled using the Qualitative Assessment and Review Instrument. This involved aggregation and synthesis of findings. A total of 21 research articles were included in the review. The review process resulted in 129 study findings that were aggregated into 15 categories. The categories generated six synthesized findings: 1) An emotional roller coaster between hope and hopelessness, 2) Mothers as advocates in a battlefield within the system and family, 3) Parental experiences in a crossfire of blame, self-blame and stigmatization, 4) Shuttling between supportive and non-supportive services and professionals, 5) Routines, structures and strategies within everyday life, and 6) Despite multiple challenges, it is not all bad. The findings illustrate the complexity of parental experiences that are influenced by guilt, hope, blame, stigmatization, exhaustion, reconciliation and professional collaboration. The findings address the impact attention deficit hyperactivity disorder has on the everyday family, and how parents seem to adapt to their life situation in the process of accepting their child's disorder. Health care systems and other professionals need to provide support and understanding to families of children with ADHD. Further research is needed to examine how professionals in health care settings can address the individual needs of the families and how future interventions may support the families and improve competences of health professionals.