Irish experiences of parenting with early inflammatory arthritis: a qualitative study

Abstract

<h2>Abstract</h2><h3>Background</h3> Symptoms of inflammatory arthritis affect human functioning. The impact of arthritis on parenting has mainly been considered in individuals with established disease and those who had arthritis before becoming parents. We aimed to explore the impact of early inflammatory arthritis on participation in parenting roles, which has not been widely studied. <h3>Methods</h3> In this qualitative study done in Ireland, one-off semi-structured interviews were used to gather personal insights into daily lived experiences of managing parenting roles in people with early arthritis and the perceived impact of the disease on parenting participation. Participants aged 32–62 years with early inflammatory arthritis (<2 years duration) and who were parents of dependent children (aged 21 years or younger) were interviewed. All participants were parents before the onset of arthritis symptoms and subsequent diagnosis. Qualitative description and thematic methods were used in the data analysis. <h3>Findings</h3> Between Nov 29, 2019, and June 25, 2020, 24 individuals with inflammatory arthritis were interviewed. The median age of participants was 46·5 years (IQR 40·0–53·8) and 20 (83%) were women. Participants discussed parenting experiences and words such as mother or father were used first by the participant and not assigned by the interviewer (who asked about parenting). The study was open to parents of all genders and self-identifiers, explicit assessment of gender was not sought. Parenting roles were substantially affected in early disease, and extensive parenting restrictions were identified, regardless of age and gender. Physical symptoms hampered everyday activities. Parent–child interactions were altered by the emotional impact of early arthritis, including low mood and increased irritability. Parents emphasised remorse at the negative impact of arthritis on their children's childhood. Parent-role identity and parents' perception of how they were viewed by their children were negatively impacted by early disease with considerable self-imposed pressure to shield children from the consequences of arthritis. Parents described feeling forced to delegate parenting roles to other people (ie, family members, siblings, and other children) due to inflammatory arthritis. Women predominantly discussed day-to-day parenting and the practical and emotional impacts on nurture, care, and play elements. Men predominantly discussed the impact on masculine identity as a provider and the fear of not being able to sustain this parenting role in the future. Men appeared to judge self-perceived success as a father on the basis of their ability to provide financially now and in the future. <h3>Interpretation</h3> Inflammatory arthritis has a negative impact on parenting, which appears to differ in early versus established arthritis. Men and women have different parent-focused priorities that require distinct health-care approaches. Understanding factors that influence parenting in people with arthritis is important to identify appropriate health-care interventions. <h3>Funding</h3> None.