Feasibility of a transition intervention aimed at adolescents with chronic illness

TY - JOUR

T1 - Feasibility of a transition intervention aimed at adolescents with chronic illness

AU - Hanghøj, Signe

AU - Boisen, Kirsten A.

AU - Schmiegelow, Kjeld

AU - Hølge-Hazelton, Bibi

PY - 2018

Y1 - 2018

N2 - Background: International guidelines recommend planned and structured transition programmes for adolescents with chronic illness because inadequate transition may lead to poor disease control and risk of lacking outpatient follow-up. Objective: To investigate the feasibility of a transition intervention aimed at adolescents with chronic illness focusing on declines, drop-outs, no-shows and advantages and disadvantages of participating. Methods: We invited 236 adolescents (12-20 years) with juvenile idiopathic arthritis (JIA) to participate in a randomised controlled trial (RCT) transition intervention. Reasons for decline and drop-outs were calculated. Adolescents' experiences of advantages and disadvantages of participating and reasons for no-shows were investigated through focus groups and telephone interviews, which were analysed using thematic analysis. Results: One hundred and twenty of the 236 eligible patients declined to participate in the intervention and 20% dropped out during the intervention. Unspecified declines and practical issues were the most common reason to decline, and 'do not wish to continue' was the most common reason to drop-out. Reasons for no-shows were forgetting and being too busy. Advantages of participating were stated as 'participating without parents', 'trust and confidentiality', 'being able to set the agenda' and 'responsiveness'. Disadvantages were 'unclear aim of the study', 'meeting others with JIA', 'too few conversations' and 'transport issues'. Conclusions: Many adolescents had difficulties understanding the aim of the intervention. However, most participants appreciated the conversations about identity as well as the trust and confidentiality in the communication. In the future, adolescents should be offered more individually organised programmes according to their preferences and needs in cooperation with parents and health care providers.

AB - Background: International guidelines recommend planned and structured transition programmes for adolescents with chronic illness because inadequate transition may lead to poor disease control and risk of lacking outpatient follow-up. Objective: To investigate the feasibility of a transition intervention aimed at adolescents with chronic illness focusing on declines, drop-outs, no-shows and advantages and disadvantages of participating. Methods: We invited 236 adolescents (12-20 years) with juvenile idiopathic arthritis (JIA) to participate in a randomised controlled trial (RCT) transition intervention. Reasons for decline and drop-outs were calculated. Adolescents' experiences of advantages and disadvantages of participating and reasons for no-shows were investigated through focus groups and telephone interviews, which were analysed using thematic analysis. Results: One hundred and twenty of the 236 eligible patients declined to participate in the intervention and 20% dropped out during the intervention. Unspecified declines and practical issues were the most common reason to decline, and 'do not wish to continue' was the most common reason to drop-out. Reasons for no-shows were forgetting and being too busy. Advantages of participating were stated as 'participating without parents', 'trust and confidentiality', 'being able to set the agenda' and 'responsiveness'. Disadvantages were 'unclear aim of the study', 'meeting others with JIA', 'too few conversations' and 'transport issues'. Conclusions: Many adolescents had difficulties understanding the aim of the intervention. However, most participants appreciated the conversations about identity as well as the trust and confidentiality in the communication. In the future, adolescents should be offered more individually organised programmes according to their preferences and needs in cooperation with parents and health care providers.

KW - adolescents

KW - chronic illness

KW - feasibility

KW - intervention

KW - transition

U2 - 10.1515/ijamh-2016-0047

DO - 10.1515/ijamh-2016-0047

M3 - Journal article

C2 - 27740919

AN - SCOPUS:85049105411

SN - 0334-0139

VL - 30

JO - International Journal of Adolescent Medicine and Health

JF - International Journal of Adolescent Medicine and Health

IS - 3

M1 - 20160047

ER -