Use of the incomplete sentences and the ‘three wishes’ approach in the identification of the subjective perception and impact of cystic fibrosis. The first open methodological experience in Czech voluntary patients: a pilot study

Jan Chrastina

Abstract


Aim. Cystic fibrosis (CF) brings numerous limitations and changes in the perception and behaviour. Thepresent study aimed to use a specific qualitative approach to describe the main dimensions and categoriesin the area of perception/presence of CF in 25 cases. Methods. The research (a pilot study) used theopen methodological approach of the incomplete sentences (a total of 15) and the ‘three wishes’ techniquein 25 voluntary patients (20 women and 5 men). Two items identified the current condition andsources of support. Results. Main dimensions emphasised/signified by cases included particularly healthassistance/support and life satisfaction/wishes. The categories of family and patient themselves were themain sources of patients’ support. Conclusions. The given methodological approach seemed as a highlyspecific and valuable tool for obtaining the data of subjective nature. The knowledge and understandingof the specifics can help mutual effectiveness in the context of communication, diagnostic and complianceprocesses in treatment, health/special education and other areas.


Keywords


Cystic fibrosis; Methodology; Impact; Subjective perception; Incomplete sentences test; Three wishes technique

Full Text:

PDF

References


VanDevanter DR, Kahle JS, O´Sullivan AK, Sikirica S, Hodgkins PS. Cystic fibrosis in young children: A review of disease manifestation, progression, and response to early treatment. J Cyst Fibros. 2015; pii: S1569-1993(15)00216-7. doi: 10.1016/j.jcf.2015.09.008.

Gee L, Abbott J, Conway SP, Etherington C, Webb AK. Quality of life in cystic fibrosis: the impact of gender, general health perceptions and disease severity. J Cyst Fibros. 2003;2(4):206–13.

Braithwaite M, Philip J, Tranberg H, Finlayson F, Gold M, Kotsimbos T, Wilson J. End of life care in CF: patients, families and staff experiences and unmet needs. J Cyst Fibros. 2011;10(4):253–7. doi: 10.1016/j.jcf.2011.03.002.

Fila L. Cystická fibróza u dospělých (In Cezch) / Cystic Fibrosis in adults. Interní Med. 2014;16(2):54–60.

Vávrová V, et al. Cystická fibróza (In Czech) / Cystic Fibrosis. Prague: Grada; 2006.

CFF Patient Registry. 2012 Annual Data Report to the Center Directors. Bethesda, Maryland: Cystic Fibrosis Foundation; 2013.

UK Cystic Fibrosis Registry. Annual Data Report 2013. Cystic Fibrosis Trust; 2014.

George M, Rand-Giovannetti D, Eakin MN, Borrelli B, Zettler M, Rikert KA. Perceptions of barriers and facilitators: self-management decisions by older adolescents and adults with CF. J Cyst Fibros. 2010;9(6):425–32. doi: 10.1016/j.jcf.2010.08.016.

Jakubec P. Cystická fibróza (In Czech) / Cystic Fibrosis. Interní Med. 2006;5:235–9.

Vávrová V. Cystic fibrosis in the Czech Republic. J Cyst Fibros. 2008;7: S114. doi: 10.1016/S1569-1993(08)60434-8.

Abbott J, Holt A, Hart A, Morton AM, MacDougall L, Pogson M, Milne G, Rodgers HC, Conway SP. What defines a pulmonary exacerbation? The perception of adults with cystic fibrosis.

J Cyst Fibros. 2009;8(5):356–9. doi: 10.1016/j.jcf.2009.07.003.

Havermans T, Copaert K, Dupont LJ. Quality of life in patients with cystic fibrosis: association with anxiety and depression. J Cyst Fibros. 2008; 7(6):581–4. doi: 10.1016/j.jcf.2008.05.010.

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3(2):77–101.

Higham L, Ahmed S, Ahmed M. Hoping to Live a “Normal” Life Whilst Living with Unpredictable Health and Fear of Death: Impact of Cystic Fibrosis on Young Adults. J Genet Couns. 2013;22(3):374–83. doi: 10.1007/s10897-012-9555-1.

Targett K, Bourke S, Nash E, Murphy E, Ayres J, Devereux G. Employment in adults with cystic fibrosis. Occup Med (Lond). 2014; 64(2):87–94. doi: 10.1093/occmed/kqt140.

Demars N, Uluer A, Sawicki GS. Employment experiences among adolescents and young adults with cystic fibrosis. Disabil Rehabil. 2011;33(11):922–6. doi: 10.3109/09638288.2010.514644.

Bregnballe V, Thastum M, Schiøtz PO. Psychosocial problems in children with cystic fibrosis. Acta Pædiatr. 2007;96(1):58–61.

Hunter V. The daily grind and how to stay sane as a mother of two children with cystic fibrosis. J R Soc Med. 2003;96(suppl. 43):51–6.

Hardin DS. A Review of the Management of Two Common Clinical Problems Found in Patients with Cystic Fibrosis: Cystic Fibrosis-Related Diabetes and Poor Growth. Horm Res. 2007;68(suppl. 5):113–6. doi: 10.1159/000110603.

Sawicki GS, Sellers DE, Robinson WM. Associations between illness perceptions and health-related quality of life in adults with cystic fibrosis. J Psychosom Res. 2011;70(2):161–7. doi: 10.1016/j.jpsychores.2010.06.005.

Britto MT, Kotagal UR, Hornung RW, Atherton HD, Tsevat J, Wilmott RW. Impact of recent pulmonary exacerbations on quality of life in patients with cystic fibrosis. Chest 2002;121:64–72.

Goldbeck L, Zerrer S, Schmitz TG. Monitoring quality of life in outpatients with cystic fibrosis: feasibility and longitudinal results. J Cyst Fibros. 2007;6:171–8.

Havermans T, Wuytack L, Deboel J, Tijtgat A, Malfroot A, De Boeck C, Proesmans M. Siblings of children with cystic fibrosis: quality of life and the impact of illness. Child Care Health Dev. 2011;37(2):252–60. doi: 10.1111/j.1365-2214.2010.01165.x.

Cepuch G, Dębska G, Pawlik L, Mazurek H. Patient’s perception of the meaning of life in cystic fibrosis – its evaluation with respect to the stage of the disease and treatment. Postepy Hig Med Dosw (Online) 2012;66:714-21. doi: 10.5604/17322693.1014657.

Barker DH, Driscoll KA, Modi AC, Light MJ, Quittner AL. Supporting cystic fibrosis disease management during adolescence: the role of family and friends. Child Care Health Dev. 2012;38(4): 497–504. doi: 10.1111/j.1365-2214.2011.01286.x.

Pakhale S, Armstrong M, Holly C, Edjoc R, Gaudet E, Aaron S, et al. Assessment of stigma in patients with cystic fibrosis. BMC Pulm Med. 2014, 14:76. doi: 10.1186/1471-2466-14-76.

Filigno SS, Brannon EE, Chamberlin LA, Sullivan SM, Barnett KA, Powers SW. Qualitative analysis of parent experiences with achieving cystic fibrosis nutrition recommendations. J Cyst Fibros. 2012;11(2):125–30. doi: 10.1016/j.jcf.2011.10.006.

Grotenborg L, Kjeldsen MS, Pressler T, Hansen EH. Experiences, perceptions and assessments of medical treatment among patients with CF. J Cyst Fibros. 2010;9: S104. doi: 10.1016/S1569-1993(10)60402-X.

Hodková P, Abbott J, Malá I, Chladová H. Coping with cystic fibrosis – CF adults and parents of a child with CF in Czech Republic. J Cyst Fibros. 2008;7:S110. doi: 10.1016/S1569-1993(08)60422-1.

Barnes B. The care and education of students with Cystic Fibrosis. International Journal of Academic Research Part B 2014;6(2):159–164.