Development of a complex intervention to support parents of adolescents with chronic illness transferring from pediatrics to adult care (ParTNerSTEPs)

被引：9

作者：

Thomsen, Ena Lindhart ^{[1
]}

Esbensen, Bente Appel ^{[2
,3
]}

Hanghoj, Signe ^{[1
]}

Hansson, Helena ^{[3
,4
]}

Boisen, Kirsten Arntz ^{[1
]}

机构：

[1] Rigshosp, Dept Paediat & Adolescent Med, Ctr Adolescent Med, Copenhagen Univ Hosp, Blegdamsvej 9, DK-2100 Copenhagen O, Denmark

[2] Rigshosp, Copenhagen Ctr Arthrit Res COPECARE, Ctr Rheumatol & Spine Disorders, Ctr Head & Orthopaed,Copenhagen Univ Hosp, Valdemar Hansens Vej 13-17, DK-2900 Glostrup, Denmark

[3] Univ Copenhagen, Dept Clin Med, Fac Hlth & Med Sci, Blegdamsvej 3B, DK-2200 Copenhagen, Denmark

[4] Rigshosp, Dept Paediat & Adolescent Med, Copenhagen Univ Hosp, Blegdamsvej 60B, DK-2100 Copenhagen, Denmark

来源：

BMC HEALTH SERVICES RESEARCH | 2022年 / 22卷 / 01期

关键词：

Adolescent; Chronically ill; Complex intervention; Development; Parents; Participatory design; Transitional care; TRANSITION INTERVENTIONS; YOUNG-ADULTS; HEALTH; NEEDS; RECOMMENDATIONS; EXPERIENCES; READINESS; PATIENT; DISEASE; MODEL;

D O I：

10.1186/s12913-022-07888-5

中图分类号：

R19 [保健组织与事业（卫生事业管理）];

学科分类号：

摘要：

Background Transition from pediatric to adult care for adolescents with chronic illness is associated with outpatient non-attendance and low treatment adherence in adolescents, and with anxiety and concerns among parents. Recent studies have shown that parent involvement results in better transitions. The aim of this paper was to describe the development, through participatory design, of a comprehensive transfer program targeted to parents of adolescents with chronic illness. Methods The study was based on the UK Medical Research Council's (MRC) framework on developing and testing complex interventions. To increase the program's feasibility and relevance, participatory design was chosen as the overall method. A collaboration group of parents, young people and health care professionals (HCP) were actively involved in the development of the program. The program was developed in three development stages, in accordance with the MRC framework: 1) identifying the evidence base, 2) identifying theory, and 3) modelling process and outcomes. Results Together with the collaboration group, we developed a comprehensive transfer program targeting parents, by undertaking an iterative process, involving a literature review, individual interviews, workshops and online brainstorms. The program, called ParTNerSTEPs (Parents in Transition - a Nurse-led Support and Transfer Educational Program) comprised three components: 1) an informative website, 2) online educational events for parents, and 3) transfer consultations with providers from both pediatrics and adult care. Conclusions The MRC framework was successfully applied to develop a comprehensive transfer program targeting parents of adolescents with chronic ilness. By incorporating the principles of participatory design in the development phase, we ensured that both parents' and adolescents' needs were represented and addressed in the program.

引用

页数：11

共 49 条

[1]

Akre Christina, 2015, Int J Adolesc Med Health, V27, P261, DOI 10.1515/ijamh-2014-0020

[2] From controlling to letting go: what are the psychosocial needs of parents of adolescents with a chronic illness? [J].

Akre, Christina ;

Suris, Joan-Carles .

HEALTH EDUCATION RESEARCH, 2014, 29 (05) :764-772

[3]

[Anonymous], 2015, COMPLEX INTERVENTION

[4] Parents' Experiences of Health and Needs When Supporting Their Adolescents With Cerebral Palsy During Transition to Adulthood [J].

Bjorquist, E. ;

Nordmark, E. ;

Hallstrom, I. .

PHYSICAL & OCCUPATIONAL THERAPY IN PEDIATRICS, 2016, 36 (02) :204-216

[5]

Bratteteig T., 2013, ROUTLEDGE INT HDB PA, P117

[6]

Braun V., 2006, Qual Res Psychol, V3, P77, DOI [DOI 10.1191/1478088706QP063OA, DOI 10.1080/10875549.2021.1929659, https://doi.org/10.1191/1478088706qp063oa]

[7] Adolescents With Congenital Heart Disease and Their Parents Needs Before Transfer to Adult Care [J].