Childhood ADHD has a negative impact on the health, well-being and education outcomes of affected children (Shaw et al, 2012), and the stress of caring for the child also has consequences for parents/carers. Previous studies have reported that parents of children with ADHD have poorer mental health (Mash & Johnston, 1990), higher levels of stress related to parenting (Baker & McCal, 1995) and a greater risk of depression (Brown & Pacini, 1989) than parents who do not have children with ADHD. However, there are important gaps in the literature regarding the impact of caring for a child with ADHD, and this large observational study aimed to address these gaps.
Between December 2010 and September 2012, families with at least one child (aged 6–18 years) with a current diagnosis of ADHD were recruited via 15 NHS trusts in the UK, and data were collected from all family members. Careful adjustments were made to ensure a like-for-like comparison with two different control groups of parents/carers with children aged 6–18 years without ADHD (one control group was drawn from a large longitudinal UK household survey [USoc-control] and the other was recruited via GP practices in South Yorkshire [SYC-control]), and to explore the impact of controlling for a positive parental/carer ADHD screen, employment and relationship status. Several instruments were used to assess quality of life and well-being measures:
- EuroQoL-5 Dimensions (EQ-5D)*
- Short-Warwick Edinburgh Mental Well-Being Scale†
- Four questions about satisfaction with health, the amount of leisure time, income and life overall‡
- Three questions about the parent’s/carer’s quality of sleep§
- A question concerning the parent’s/carer’s overall happiness with the relationship with their partner||
- ADHD: Adult Self-Report Scale, to control for the parent/carer having ADHD symptoms
- The ADHD Rating Scale-IV, to assess the child’s behaviour over the last 6 months.
In total, 604 parents/carers were included in the ADHD-family group, 215 in the SYC-control group and 8595 in the USoc-group. Significant negative impacts of childhood ADHD on parents’/carers’ hours and quality of sleep, satisfaction with leisure time, and health-related quality of life were identified. Decrements in life satisfaction, mental well-being and satisfaction with intimate relationships were found, but this was not always robust across the two control groups. When using the USoc control group, it was found that having a child with ADHD reduced parents’/carers’ overall satisfaction with life and mental well-being, and a negative impact on satisfaction with leisure time and happiness with relationships, sleep hours and sleep quality was also identified. These effects tended to be weaker using the SYC-control, perhaps as a consequence of the smaller sample size. No decrements in satisfaction with health, self-reported health status or satisfaction with income were found.
This study had several limitations, including that the ADHD-family group may not adequately represent all families in the UK who have a child with ADHD because it included only families whose children had been diagnosed with ADHD and were receiving some intervention, and who gave consent to be in the study and complete the required surveys. Also, the dropout rate was quite high (17%), which could have been related to the difficulties being experienced by the families at the time of the study. Additionally, the analysis relied on the assumption that children in the control groups did not have ADHD. Moreover, because this analysis was based on observational, cross-sectional data, it cannot be used to infer causality. Furthermore, although the control groups were closely matched to the ADHD-family group in terms of observable characteristics, and further model adjustments were implemented, it is not possible to be certain that there were not differences in unobserved characteristics that may not have been accounted for.
This analysis clearly showed that caring for a child with ADHD is associated with a negative impact across a range of health and quality-of-life outcomes, and identified important impacts upon parents’/carers’ hours of sleep and quality of sleep, satisfaction with leisure time, health, life satisfaction, positive mental well-being and happiness with relationships. It also highlighted the complexity of isolating these impacts from the impact of the parents’ own ADHD, and their health behaviours and attitudes, and showed that among potential controls, there are complex relationships that may not all be accounted for.
*The EQ-5D is a self-report, generic, preference-based, quality-of-life instrument that is used to estimate health utilities on a scale from 0 to 1, where 0 represents a health state as bad as being dead and 1 represents a health state as good as full health
†The Short-Warwick Edinburgh Mental Well-Being Scale is a 7-item self-report scale that measures positive mental well-being, where each item (optimism, feeling useful, feeling relaxed, feeling able to deal with problems, thinking clearly, feeling close to others and feeling decisive) is scored between 1 and 5, with 1 indicating “none of the time” and 5 indicating “all of the time”
‡Each question used a scale of 1 (completely dissatisfied) to 7 (completely satisfied)
§Participants were asked how often during the last month they had had trouble sleeping due to not being able to fall asleep within 30 minutes and due to waking during the night or early in the morning (each with five response categories), and a question on their overall perception of sleep quality, with four response categories (very good, fairly good, fairly bad, very bad)
||The question used a scale from 1 (extremely unhappy) to 7 (perfect)
Baker DB, McCal K. Parenting stress in parents of children with attention-deficit hyperactivity disorder and parents of children with learning disabilities. J Child Fam Stud 1995; 4: 57-68.
Brown RT, Pacini JN. Perceived family functioning, marital status, and depression in parents of boys with attention deficit disorder. J Learn Disabil 1989; 22: 581-587.
Mash EJ, Johnston C. Determinants of parenting stress: illustrations from families of hyperactive children and families of physically abused children. J Clin Child Psychol 1990; 19: 313-328.
Peasgood T, Bhardwaj A, Brazier JE, et al. What is the health and well-being burden for parents living with a child with ADHD in the United Kingdom? J Atten Disord 2020; Epub ahead of print.
Shaw M, Hodgkins P, Caci H, et al. A systematic review and analysis of long-term outcomes in attention deficit hyperactivity disorder: effects of treatment and non-treatment. BMC Med 2012; 10: 99.