272 Chapter 9 improvement within programs for preterm born children (e.g., for a parenting intervention program (ToP program), Change study) (54). Other health care teams have expressed a desire to administer PREMs in order to make care more patientcentered, but lack of time, (financial) resources, and knowledge prevents them to actually use PREMs. In addition, it should be clear to patients which answers (on PROMs and PREMs) are being fed back to the clinician, as responses on PREMs may differ when results are being discussed or not. Methodological considerations Some overall limitations should be taken into account when looking at the findings of this thesis. Representativeness of the participants Patients, parents and clinicians were included in different studies in this thesis to gain insight into their perspective regarding All Voices Count and the KLIK PROM portal. Although we tried to include representative samples, some remarks need to be made. While we invited adolescents with different chronic conditions to participate in the various phases of the development of All Voices Count, only adolescents with cancer participated during the evaluation of the pilot study. However, we showed in Chapter 3 that adolescents, regardless of their chronic condition, showed the same problems and supportive factors. Therefore, we believe that this did not influence the results. In addition, we only invited patients and parents that were part of the KLIK panel (consisting of patients/parents in the Emma Children’s Hospital that indicated that they give permission to be invited for research projects) to participate in the KLIK evaluation studies. These patients/parents might be more assertive than other KLIK users. Earlier research showed that patient who participate in (codesign) studies tend to be more self-confident, critical, and assertive in comparison to patients who do not participate, which may hinder representativeness (4, 55). Challenging to include sufficient participants We have encountered difficulties in including an adequate number of participants, especially in studies focused on the engagement of children and adolescents. It has been challenging to motivate them to participate in research (both for quantitative as qualitative research). We noticed that adolescents preferred to spend their time differently, which is healthy from a developmentally perspective. Other barriers for engagement included logistic difficulties related to traveling to the hospital, time
RkJQdWJsaXNoZXIy MTk4NDMw