It has been reported that care coordination and family-centred care are important factors when supporting families of children with special needs. Unfortunately though, it has also been found that these families often have to fight for this support and may never get what they need from the healthcare system. Furthermore, research regarding parental perspectives on care in diverse healthcare settings is limited, therefore this study aimed to examine parental experiences of how healthcare practices and healthcare professionals in hospital clinics in Denmark influence the everyday life of the parent with a child with ADHD.
The study investigated how parents with a child with ADHD:
- Experience collaboration with healthcare services and healthcare professionals.
- Feel supported by healthcare professionals in everyday life.
- Perceive barriers and enablers in healthcare.
Participants* included parents (biological or step-parents, or those with parental responsibilities for the child) of children aged 5–12 years with an ICD-10 diagnosis of ADHD.†
Data were collected at two general paediatric outpatient clinics and two child and adolescent mental health clinics in Denmark. The primary data sources were participant observations and interviews conducted between February and November 2015 whenever a family visited one of the clinics. Analysis of the participants’ experiences brought three main themes to light:
- When the house of cards collapses in everyday life: reflecting how the stability of everyday life can be affected by having a child with ADHD.
- Parents have an awareness that at some point, ADHD will result in disturbances to the life of the child and, by extension, their family.
- Parents have constant concern for the functioning and behaviour of their child, and acknowledged that, even with coping strategies, they are not always able to control their child’s behaviour. This can result in feelings of frustration, hopelessness and despair, and in some cases can lead to financial, physical or mental health problems.
- When ‘the house of cards’ collapses, parents depend on support from both the healthcare system and other people/groups, such as their child’s teacher, social workers or relatives, to overcome the disruptive phase.
- Treading water before diagnosis: concerning parental experiences before and after their child’s diagnosis of ADHD.
- Frequently, parents sense that there is something wrong with their child long before ADHD diagnosis, and often voice their frustrations at the length of time before which ADHD was diagnosed and their concerns validated, and an impression that healthcare professionals were initially dismissive or viewed their parenting skills as incompetent.
- Once their child has been referred for ADHD assessment, parents generally feel that the healthcare system is effective and that diagnosis is made promptly, and that the diagnosis provides them with opportunities to receive specific support for their child.
- Compared with physical disabilities, parents of children with ADHD feel that the disorder impacts on all areas of life.
- Healthcare professionals and the health system as a whole can have a significant influence on the lives of children with ADHD and their families, dependent on the level of accessibility and support following diagnosis.
- Healthcare as a significant lifeline: reflecting the impact that professional support has on the lives of both the child with ADHD and their parents.
- When parents build trusting relationships with professionals involved in the care of their child with ADHD, they begin to view them as allies.
- This faith in the professional is often dependent on the professional’s interaction with and recognition of the child with ADHD, and parents value those professionals who “get the child” and understand how best to engage and handle the child.
Limitations of the study included: 1) short participant observations and exclusion of the perspectives of both the healthcare professionals and the children with ADHD themselves; 2) as the population was taken from only four specific clinics, the experiences reported may not reflect experiences at other clinics.
The authors concluded that not only accessibility to healthcare services, but also trusting relationships with healthcare professionals who understand the impact of ADHD on the everyday lives of the child and their family are important to assist parents with the complex challenges associated with having a child with ADHD. The clinical implications of this study include the need for healthcare professionals of all specialities to consider how best to involve parents in a family-centred approach to managing their child’s ADHD.
*Participants were recruited using a combination of sampling procedures: purposeful sampling (participants with experiences of having a child with ADHD who received hospital-based care and treatment were selected); convenient sampling (participants were included if they had an appointment in one of the clinics during the period of data collection); and maximum variation sampling (targeted the range of hospital settings that the families attend, thereby including participants who experienced both general and psychiatric hospital settings)
†International Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10) ADHD diagnosis codes included F90 (Hyperkinetic disorders) and F98.8 (Attention deficit disorder without hyperactivity)
Laugesen B, Lauritsen MB, Jørgensen R, et al. ADHD and everyday life: healthcare as a significant lifeline. J Pediatr Nurs 2017; 35: 105-112.