How ready are young people with cardiac conditions to move to adult services?
And what about the parents?
What are lessons that can be learned from one study of young people with cardiac conditions and their parents as they make the move into adult services? Christine English looks at the evidence.
Burnström Ǻ, Mora MA, Öjmyr-Joelsson M et al (2019) Ready for transfer to adult care? A triadic evaluation of transition readiness in adolescents with congenital heart disease and their parents. Journal of Family Nursing. 25, 3, 447-468. doi: 10.1177/1074840719864255
To describe readiness levels of young people with congenital heart disease for transition to adult services, compare young people’s self-assessment of readiness for transition with parental assessments and examine transition readiness.
A total of 157 triads of young people aged 14 to 18 years, and their parents, were recruited from four Swedish hospitals.
Young people who had undergone transplantation, had impaired cognitive abilities, were unable to read or write, or were non-Swedish speakers were excluded.
The young people completed a Readiness for Transition questionnaire (RTQ) (Gilleland et al 2012) while their parents used a proxy version of the same questionnaire.
Three key areas of RTQ were: young people’s health behaviour and responsibility, parental involvement, and young people’s overall readiness for transition.
Participants' scoring was through four-point Likert scales. Data were analysed with SPSS and only complete triad data were used.
The young people viewed themselves as more ready to adopt responsibility for their health and for transfer to adult care than reported by their parents.
Perceived readiness for transition and young people’s responsibility scores increased with the young person's age.
These findings can be interpreted as over-estimation by young people of their readiness or under-estimation by parents of their child’s capacity for transition, but whichever is true, the scores show an association.
It was not possible to determine whether the level of parental involvement predicts over-protection of the young person or whether such involvement is simply an aspect of parenting a young person with a chronic condition.
A familiar concept in education is that parents’ or teachers’ belief in a child’s ability can create self-belief enabling future achievement by altering their mindset (Dweck 1999). This concept aligns with this study’s findings and provides an opportunity to rethink our perceptions of parents in the transition process.
Children’s nurses who want to advance their nursing practice could invest more time supporting parents’ and young people's readiness for transition rather than focusing on the young person alone. This involves recognising the effect of parental beliefs and behaviours on their child, and of interdependence in the parent-child relationship.
Discussion and sharing of the different perspectives on readiness could start conversations between parents, professionals and young people as they develop more personalised plans for transfer based on readiness rather than age.
Parental readiness should also be considered when a young person moves into adult services
Optimum time for transition is always difficult to determine because this can differ for each young person, yet age is often used to identify when a young person needs to move to adult services.
Not surprisingly, some young people and parents struggle with the changes involved in moving services. People cope with these upheavals differently, but age can be a poor indicator of a person's level of maturity and capability for self-management and independence, so better ways of deciding when a young person is ready to transition should be welcomed.
Children’s nurses are in a prime position to support families in the transition process.
Education and empowerment for young people is critical in smoothing the transfer by promoting their ability to self-manage their condition, and many transition plans will focus on these elements. However, this study suggests that parental readiness is an important factor too.
At times, it may be tempting to see some parents’ behaviours as problematic for their child’s progress to adult services; they may even be labelled ‘over-protective’. However, to be effective in our support roles as nurses we need to re-frame such perceptions.
- Dweck CS (1999) Self-theories: Their Role in Motivation, Personality and Development. Psychology Press, Philadelphia PA.
- Gilleland J, Amaral S, Mee L et al (2012) Getting ready to leave: transition readiness in adolescent kidney transplant recipients. Journal of Pediatric Psychology, 37, 85-96. doi: 10.1093/jpepsy/jsr049
Compiled by Christine English, principal lecturer, Northumbria University, on behalf of the RCN’s Research in Child Health community