Adolescents with Cystic Fibrosis Expressing their Possible Selves through Photovoice: A Longitudinal Interpretative Phenomenological Analysis to Prepare a Peer Support Intervention for Healthcare Transition
Social & behavioral sciences, psychology: Multidisciplinary, general & others
Author, co-author :
Morsa, Maxime ; Université de Liège - ULiège > Département de Psychologie > Recherche qualitative
Vincent-Lardy, Adélaïde
Haesebaert, Julie
Llerena, Catherine
Pelz, Lucie ; Université de Liège - ULiège > Adaptation, Résilience et CHangement (ARCH)
Reix, Philippe
Gagnayre, Rémi
Reynaud, Quitterie
Language :
English
Title :
Adolescents with Cystic Fibrosis Expressing their Possible Selves through Photovoice: A Longitudinal Interpretative Phenomenological Analysis to Prepare a Peer Support Intervention for Healthcare Transition
White PH, Cooley WC, TRANSITIONS CLINICAL REPORT AUTHORING GROUP, AMERICAN ACADEMY OF PEDIATRICS, AMERICAN ACADEMY OF FAMILY PHYSICIANS, AMERICAN COLLEGE OF PHYSICIANS. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2018;142(5):e20182587. doi:10.1542/peds.2018-2587.
Betz CL. SPN Position Statement: Transition of Pediatric Patients Into Adult Care. J Pediatr Nurs. 2017;35:160–164. doi:10.1016/j.pedn.2017.05.003.
Peters LA, Brown EM. The relationship between illness identity and the self-management of inflammatory bowel disease. Br J Health Psychol. 2022;27(3):956–970. doi:10.1111/bjhp. 12584.
Morsa M, Gagnayre R, Deccache C, Lombrail P. Factors influencing the transition from pediatric to adult care: A scoping review of the literature to conceptualize a relevant education program. Patient Educ Couns. 2017;100(10):1796–1806. doi:10.1016/j.pec.2017.05.024.
Luyckx K, Seiffge-Krenke I, Schwartz SJ, et al. Identity development, coping, and adjustment in emerging adults with a chronic illness: The sample case of type 1 diabetes. J Adolesc Health. 2008;43(5):451–458. doi:10.1016/j.jadohealth.2008. 04.005.
Helgeson VS, Novak SA. Illness centrality and well-being among male and female early adolescents with diabetes. J Pediatr Psychol. 2006;32(3):260–272. doi:10.1093/jpepsy/ jsl018.
Luyckx K, Schwartz SJ, Goossens L, Beyers W, Missotten L. Processes of personal identity formation and evaluation. In: Schwartz SJ, Luyckx K, Vignoles VL, eds. Handbook of Identity Theory and Research. Springer; 2011:77–98.
Peña EV, Stapleton LD, Schaffer LM. Critical perspectives on disability identity: Critical perspectives on disability identity. New Dir Stud Serv. 2016;2016(154):85–96. doi:10.1002/ss. 20177.
Ferro MA, Boyle MH. Self-concept among youth with a chronic illness: A meta-analytic review. Health Psychol. 2013;32(8):839–848. doi:10.1037/a0031861.
Burton M, Kagan C. Liberation social psychology: Learning from Latin America. J Community Appl Soc Psychol. 2005;15:63–78. doi:10.1002/casp.786.
Cambon L, Alla F. Current challenges in population health intervention research. J Epidemiol Community Health. 2019;73(11):990–992. doi:10.1136/jech-2019-212225.
Horky S, Sherman L, Polvinen JK, Saxena M, Rich M. I’m going to tell you a little about myself: Illness centrality, self-image and identity in cystic fibrosis. Patient Exp J. 2017;4(3):95–103. doi:10.35680/2372-0247.1200.
Harrigan M, Jessup M, Bennett K, Mulrennan S. Me, myself, and I: A systematic review of cystic fibrosis and self-concept. Pediatr Pulmonol. 2024;59(5):1175–1195. doi:10.1002/ppul. 26916.
Kirk S, Milnes L. An exploration of how young people and parents use online support in the context of living with cystic fibrosis. Health Expect. 2016;19(2):309–321. doi:10.1111/ hex.12352.
Kew KM, Carr R, Crossingham I. Lay-led and peer support interventions for adolescents with asthma. Cochrane Database Syst Rev. 2017;2017(4). doi:10.1002/14651858.CD012331. pub2.
Kulandaivelu Y, Kohut SA. Peer support for adolescents with chronic illness. In: Avery JD, Ed. Peer Support in Medicine: A Quick Guide. Springer Nature Switzerland AG; 2021:95–113. doi:10.1007/978-3-030-58660-7_5.
María Tejada Tayabas L, Castillo León T, Monarrez Espino J. Qualitative evaluation: A critical and interpretative complementary approach to improve health programs and services. Int J Qual Stud Health Well-Being. 2014;9(1):24417. doi:10. 3402/qhw.v9.24417.
O’Cathain A, Croot L, Sworn K, et al. Taxonomy of approaches to developing interventions to improve health: A systematic methods overview. Pilot Feasibility Stud. 2019;5(1):41. doi:10. 1186/s40814-019-0425-6.
Korstjens I, Moser A. Series: Practical guidance to qualitative research. Part 6: Longitudinal qualitative and mixed-methods approaches for longitudinal and complex health themes in primary care research. Eur J Gen Pract. 2022;28(1):118–124. doi:10.1080/13814788.2022.2053106.
Tuthill EL, Maltby AE, DiClemente K, Pellowski JA. Longitudinal qualitative methods in health behavior and nursing research: Assumptions, design, analysis and lessons learned. Int J Qual Methods. 2020;19:160940692096579. doi:10.1177/ 1609406920965799.
Schmidt B, Schoppe-Sullivan S, Frizzo G, Piccinini C. A qualitative multiple case study of the division of labor across the transition to parenthood in south-Brazilian families. Sex Roles. 2019;81(5):272–289. doi:10.1007/s11199-018-0999-0.
Smith JA, Flowers P, Larkin M. Interpretative Phenomenological Analysis: Theory, Method and Research. London: Sage; 2022.
Markus H, Nurius P. Possible selves. Am Psychol. 1986;41(9):954–969.
Antoine P, Smith JA. Saisir l’expérience: Présentation de l’analyse phénoménologique interprétative comme méthodologie qualitative en psychologie. Psychol Fr. 2017;62(4):373–385. doi:10.1016/j.psfr.2016.04.001.
Farr J, Nizza IE. Longitudinal Interpretative Phenomenological Analysis (LIPA): A review of studies and methodological considerations. Qual Res Psychol. 2019;16(2):199–217. doi:10. 1080/14780887.2018.1540677.
Malterud K, Siersma VD, Guassora AD. Sample size in qualitative interview studies: Guided by information power. Qual Health Res. 2016;26(13):1753–1760. doi:10.1177/ 1049732315617444.
Bates EA, McCann JJ, Kaye LK, Taylor JC. “Beyond words”: A researcher’s guide to using photo elicitation in psychology. Qual Res Psychol. 2017;14(4):459–481. doi:10.1080/ 14780887.2017.1359352.
Keats PA. Multiple text analysis in narrative research: Visual, written, and spoken stories of experience. Qual Res. 2009;9(2):181–195. doi:10.1177/1468794108099320.
Rose G. On the relation between “visual research methods” and contemporary visual culture. Sociol Rev. 2014;62(1):24–46. doi:10.1111/1467-954X.12109.
Gray LM, Wong-Wylie G, Rempel GR, Cook K. Expanding qualitative research interviewing strategies: Zoom video communications. Qual Rep. 2020;25(5):1292–1301. doi:10. 46743/2160-3715/2020.4212.
Rupert DJ, Poehlman JA, Hayes JJ, Ray SE, Moultrie RR. Virtual versus in-person focus groups: Comparison of costs, recruitment, and participant logistics. J Med Internet Res. 2017;19(3):e80. doi:10.2196/jmir.6980.
McCoy LK. Longitudinal qualitative research and interpretative phenomenological analysis: Philosophical connections and practical considerations. Qual Res Psychol. 2017;14(4):442–458. doi:10.1080/14780887.2017.1340530.
Snelgrove S, Edwards S, Liossi C. A longitudinal study of patients’ experiences of chronic low back pain using interpretative phenomenological analysis: Changes and consistencies. Psychol Health. 2013;28(2):121–138. doi:10.1080/08870446. 2011.630734.
O’Brien B, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research. Acad Med. 2014;89(9):1245–1251. doi:10.1097/ACM. 0000000000000388.
Shaw RL, West K, Hagger B, Holland CA. Living well to the end: A phenomenological analysis of life in extra care housing. Int J Qual Stud Health Well-Being. 2016;11(1):31100. doi:10. 3402/qhw.v11.31100.
Smith JA. Identity development during the transition to motherhood: An interpretative phenomenological analysis. J Reprod Infant Psychol. 1999;17(3):281–299. doi:10.1080/ 02646839908404595.
Syed M, McLean KC. Who gets to live the good life? Master narratives, identity, and well-being within a marginalizing society. J Res Pers. 2022;100:104285. doi:10.1016/j.jrp.2022. 104285.
Goffman E. Stigmate: Les Usages Sociaux des Handicaps. Paris: Les Editions de Minuit; 1963.
Varul MZ. Talcott Parsons, the sick role and chronic illness. Body Soc. 2010;16(2):7294. doi:10.1177/ 1357034X10364766.
Raymaekers K, Prikken S, Vanhalst J, et al. The social context and illness identity in youth with type 1 diabetes: A three-wave longitudinal study. J Youth Adolesc. 2020;49(2):449–466. doi:10.1007/s10964-019-01180-2.
Nathan N, Thouvenin G, Dubern B, Corvol H. Elexacaftor/tezacaftor/ivacaftor can rescue pancreatic function in F508del homozygous children. Pediatr Pulmonol. 2024;59(3):788–790. doi:10.1002/ppul.26794.
Berliner D. Devenir Autre: Hétérogénéité et Plasticité du Soi. Paris: La Découverte; 2022.
Brinkmann S. Psychology as a science of life. Theory Psychol. 2019;30(1):317.
Su J, Dugas M, Guo X, Gao G. Building social identity-based groups to enhance online peer support for patients with chronic disease: A pilot study using mixed-methods evaluation. Transl Behav Med. 2022;12(5):702–712. doi:10.1093/ tbm/ibac008.
Rosenblum KL, Muzik M, Morelen DM, et al. A community-based randomized controlled trial of Mom Power parenting intervention for mothers with interpersonal trauma histories and their young children. Arch Womens Ment Health. 2017;20(5):673–686. doi:10.1007/s00737-017-0734-9.
Dahl RE, Allen NB, Wilbrecht L, Suleiman AB. Importance of investing in adolescence from a developmental science perspective. Nature. 2018;554(7693):441–450. doi:10.1038/ nature25770.
Nizza IE, Smith JA, Kirkham JA. “Put the illness in a box”: A longitudinal interpretative phenomenological analysis of changes in a sufferer’s pictorial representations of pain following participation in a pain management programme. Br J Pain. 2018;12(3):163–170. doi:10.1177/2049463717738804.
Garcia T. Laisser Être et Rendre Puissant. Paris: Puf; 2023.
Appadurai A. The Future as Cultural Fact: Essays on the Global Condition. London, NY: Verso; 2013.
