Problems in functioning from the patient perspective using the International Classification of Functioning, Disability and Health (ICF) as a reference

Abstract

Summary We conducted a qualitative, multicenter study using a focus group design to explore the lived experiences of persons with any kind of primary sleep disorder with regard to functioning and contextual factors using six open‐ended questions related to the International Classification of Functioning, Disability and Health (ICF) components. We classified the results using the ICF as a frame of reference. We identified the meaningful concepts within the transcribed data and then linked them to ICF categories according to established linking rules. The six focus groups with 27 participants yielded a total of 6986 relevant concepts, which were linked to a total of 168 different second‐level ICF categories. From the patient perspective, the ICF components: (1) Body Functions; (2) Activities & Participation; and (3) Environmental Factors were equally represented; while (4) Body Structures appeared poignantly less frequently. Out of the total number of concepts, 1843 concepts (26%) were assigned to the ICF component Personal Factors, which is not yet classified but could indicate important aspects of resource management and strategy development of those who have a sleep disorder. Therefore, treatment of patients with sleep disorders must not be limited to anatomical and (patho‐)physiological changes, but should also consider a more comprehensive view that includes patient’s demands, strategies and resources in daily life and the contextual circumstances surrounding the individual.

The use of the International Classification of Functioning, Disability and Health to understand the health and functioning experiences of people with chronic conditions from the person perspective: a systematic review

“…The relatively small number of studies which used the person-centred approach is notable considering the emerging research which supports this approach to fully understand the person's experience [6,22,51], however, our findings provide evidence of increasing interest in the biopsychosocial and person-centred approach to healthcare. Only two papers published in 2012 met the inclusion criteria, although we identified 155 studies published in 2012 which used the ICF to study chronic conditions.…”

“…In the majority of studies the average age of the participants was over 50, which is consistent with the higher prevalence of certain chronic conditions with age [46]. The younger participants represented conditions which are not agedependent including spinal cord injury [47][48][49][50], primary sleep disorder [51], multiple sclerosis [52,53], cerebral palsy [54] and Huntington's disease [55]. The participants undergoing vocational rehabilitation [56,57] and with non-specified disability [58] were also generally of a younger age.…”

The Insomnia Patient Perspective, A Narrative Review

“…I'm scared that I'm not going to be able to go back to my studies and go to university. (p. 199) Furthermore, using the International Classification of Functioning, Disability Health (ICF) Gradinger et al (2011) also found similar social and environmental functional deficits when exploring the lived experiences among those with primary sleep disorders such as insomnia.…”

The ICF core sets for hearing loss project: Functioning and disability from the patient perspective

“…The choice of six focus groups in this study was based on previous reports on ICF core set projects, where 4 to 6 focus groups were required to collect sufficient information about functioning and contextual factors to reach data saturation (e.g. Boonen et al, 2009;Coenen et al, 2011;Gradinger et al, 2011). The focus groups were organized according to three age groups (18-40 years, 41-60 years and 61 years and above).…”

“…In previous Core Set projects and ICF research projects, the first three steps of the meaning condensation methodology as described by Kvale (1996) was used (Boonen et al, 2009;Coenen et al, 2012;Coenen et al, 2011;Glässel et al, 2011;Gradinger et al, 2011). The essence of that method is the condensation part (i.e.,…”