Addressing objective 1: to work with young people with long-term
conditions to determine what successful transition means to them and
what is important in their transitional health care
Qualitative research undertaken with young people during and after transition has been systematically
reviewed. The first review51identified four main issues: young people’s feelings and concerns, young
people’s recommendations about components of transition services, outcomes after transfer and mode of
transfer. The second review44examined the point of transfer and identified four themes: facing changes in
significant relationships, moving from a familiar to an unknown ward culture, being prepared for transfer and achieving responsibility.
The work of this WP has been published in Hislop et al.52and material in this section is based on that paper.
Reprinted from Journal of Adolescent Health, Vol. 59, Hislop J, Mason H, Parr IR, Vale L, Colver A, Views
of young people with chronic conditions on transition from pediatric to adult health services, 245–53,
Copyright 2016, with permission from Elsevier.
Aims
l To explore the views of young people about transition.
l To identify and describe these views using Q-methodology.
Methods
Q-methodology combines quantitative and qualitative methods to investigate the range of possible views on a subject. It involves the rank ordering (Q-sort) by participants of a set of statements (Q-set) about a topic, after which a by-person factor analysis of the Q-sorts is used to reveal shared perspectives on the
topic. Further details are in our published paper.52
The Q-set of statements relevant to young people in transition was generated using quotations from two
reviews of qualitative studies44,51and our own mapping review of service models.53These were coded into
a set of emergent themes,‘planning’, ‘staff related’, ‘maturity’, ‘parent-related’ and ‘other’, which were
then recategorised into several subthemes. One representative statement from each subtheme was selected. Following consultation with UP, the wording was adjusted and each final statement was prepared for
sorting by participants onto a triangular grid. The statements are set out in table 1 of the published article.52
Q-methodology requires that individuals in the sample are likely to hold different views. Therefore, maximum variation sampling was used, by age, gender, health condition and whether or not the young
person had transferred. We sought 45 young people, aged 14–22 years, with a long-term condition that
would soon require or had recently required them to transfer from children’s to adults’ services. Those
with intellectual disability who could not complete the Q-sort were excluded. The number of participants is
usually, but not necessarily, smaller than the Q-set.54The aim is to have four or five persons defining each
anticipated viewpoint; there are often two to four, and rarely more than six. Accordingly, the breadth and diversity of viewpoints is probably best achieved when a participant group contains between 40 and 60 participants.55
Clinicians from 10 adults’ and children’s specialties in a NHS Trust with tertiary and secondary care
responsibilities invited young people with long-term conditions to participate. Q-sorts were administered face to face by the researcher.
Analysis
The degree to which an individual’s Q-sort corresponds to each factor derived from the factor analysis is
given by their‘factor loading’. This is a correlation coefficient between +1 and –1; the closer to 1, the
more similar an individual’s Q-sort is to the factor. Individuals are ‘exemplars’ for a factor if they have a
significant factor loading on that factor alone (p≤ 0.01). We used PQMethod software (version 2.11;
Peter Schmolck, University of the Bundeswehr, Munich, Germany) with centroid factor analysis followed by
varimax rotation.56Outputs include the number of exemplars per factor, eigenvalues and factor variance,
which provide information on the proportion of variance for the entire study explained by each factor. These
are used alongside the postsort qualitative information to determine the‘factor solution’: the final number
of factors identified.
For each factor, an idealised‘composite’ Q-sort is computed, illustrating how a person with a factor loading
of 1 would have laid out their statement cards. Attention is paid to statements that characterise each factor,
for example those placed in the+3 and –3 position on the grid, and those statements that distinguish
between factors.
We found that a four-factor solution was optimal from a statistical viewpoint and most meaningful in clinical terms.
Factor 1: young people with a‘laid back’ approach to transition
These young people were not particularly worried about transition. They did not think that transition would make much difference to them and expected their new health team to provide similar care to that
which they had experienced in children’s services. They were happy to be guided by staff on how to
manage their condition and wanted continued involvement of their parents in their care. They also wanted to be well informed about their condition.
Factor 2: young people with an anxious approach to transition
For these individuals, transition mattered very much; it worried them, they did not want transfer to happen at a set age, and they wanted a written plan in place for this. They wanted to be able to say goodbye to their current doctors, and they thought that the post-transfer service would provide different care, and that seeing different staff might not help build trust. They thought that their condition was difficult to live with and all areas of their life were affected by it. They did not know what kinds of support would be available to them in future. They wanted their parents involved in their care.
Factor 3: young people with an autonomy-seeking approach to transition
These young people wanted independence and autonomy during transition and were characterised by their wish for the withdrawal of parental involvement in their care. They wanted doctors to speak to them, rather than to their parents. They wanted doctors to offer suggestions and choices but allow them to make decisions. They were more developmentally mature in terms of their responses to statements about leaving home and living independently. They preferred flexible timings for clinics and wanted to leave the paediatric environment. They showed that they wanted to meet adult staff before transfer, and then see the same doctors in order to develop trust.
Factor 4: young people with a socially oriented approach to transition
These young people valued social interaction with family, peers and professionals to assist transition. They thought that it was important to interact with those involved in their care. They wanted to meet others in a similar situation and wanted their parents to remain involved in their care. They were comfortable with other staff being present at consultations and, for example, did not find it difficult if students were present. They felt attached to doctors (wanting a chance to say goodbye before transfer) and wanted a particular person at the clinic to help them plan the practical side of managing their condition.
There is more discussion of these factors in our published paper.52
WORK PACKAGE 1.3: Q-SORT STUDY
NIHR Journals Library www.journalslibrary.nihr.ac.uk
Strengths and limitations
Owing to the purposive sampling, claims cannot be made about how many individuals hold each point of view. Nor can inferences be made about subgroup sizes based on gender, age or condition.
We do not know if the four styles are stable over time. The views of some young people might relate to underlying personality characteristics and, therefore, might not change substantially. Alternatively, preferences may change as young people develop or as their health or health care changes.
Key findings
l Reviews of qualitative studies44,51of transition have not revealed how individuals approach the dilemmas
they face. Our results add a new dimension.
l Four factors or interaction styles of approaching transition were identified:‘laid back’, ‘anxious’,
‘autonomy-seeking’ and ‘socially oriented’.
l These four diverse styles show that there is not one view on transition. Thus, a‘one size fits all’
approach is inappropriate and tailoring care to each to each young person is crucial.
Inter-relationship with other parts of the programme
The recognition of these four interaction styles for approaching transition is a new finding and yields one of the seven key implications of the programme: implication 5.
The Q-sort study contributed to the design of the discrete choice experiment (DCE) (WP 2.3), which identified aspects of transitional health care that young people are more likely to take up. This in turn informed the economic analyses (WP 2.3).