The Perspectives of Professional Caregivers on Quality of Life of Persons with Profound Intellectual and Multiple Disabilities: A Qualitative Study

Autor/inn/en	Nieuwenhuijse, A. M.; Willems, D. L.; van Goudoever, J. B.; Olsman, E.
Titel	The Perspectives of Professional Caregivers on Quality of Life of Persons with Profound Intellectual and Multiple Disabilities: A Qualitative Study
Quelle	In: International Journal of Developmental Disabilities, 68 (2022) 2, S.190-197 (8 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	2047-3869
DOI	10.1080/20473869.2020.1737469
Schlagwörter	Severe Intellectual Disability; Multiple Disabilities; Caregiver Attitudes; Caregivers; Quality of Life; Psychological Patterns; Physical Health; Needs; Interpersonal Relationship; Foreign Countries; Well Being; Evaluation Methods; Netherlands + Suchen Sie Ihr Suchwort? Multiple disability; Mehrfachbehinderung; Caregiver; Carer; Betreuungsperson; Pfleger; Lebensqualität; Gesundheitszustand; Grundbedürfnis; Interpersonal relation; Interpersonal relations; Interpersonelle Beziehung; Zwischenmenschliche Beziehung; Ausland; Well-being; Wellness; Wohlbefinden; Niederlande
Abstract	Persons with Profound Intellectual and Multiple Disabilities (PIMD) are supported by professional caregivers for a large part of their lives. However, the perspectives of professional caregivers on good or poor Quality of Live (QoL) of persons with PIMD have hardly been explored. To explore the perspective of professional caregivers on QoL of persons with PIMD, we performed a qualitative study, conducting semi-structured interviews with eleven professional caregivers and thematically analysed them. In the interviews, these professional caregivers described examples of good and poor QoL. Good QoL was mostly described in emotional terms such as happiness, pleasure and enjoying things. Poor QoL was mostly described in physical terms such as pain, sickness and shortage of breath. The capability of persons with PIMD to influence the environment was described as an element of good QoL. Furthermore, these professional caregivers described how they assessed QoL. They 'sensed' QoL, they tested it (trial and error) and discussed QoL of persons with PIMD with colleagues. Participants emphasized the dependency of persons with PIMD on professional caregivers. Furthermore, these professional caregivers described feelings of failure and powerlessness if they could not assess or fulfil the needs of persons with PIMD. We conclude that these professional caregivers use their (tacit) knowledge to understand QoL of persons with PIMD. The relationship between QoL of persons with PIMD and professional caregivers needs more investigation, because of its consequences both for the persons with PIMD and the professional caregivers. (As Provided).
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Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01