title: Impact of incontinence on the quality of life of caregivers of older persons with incontinence: A qualitative study in four European countries.
abstract: The aim of this study was to assess the impact of incontinence management on informal caregivers of older persons with incontinence. In order to investigate this phenomenon in different welfare systems via qualitative interviews and a content analysis methodology, the study was carried out in four European countries (Italy, the Netherlands, Slovak Republic and Sweden). To this purpose, 50 semi-structured interviews were conducted with spouses and children of older people receiving their help to manage the consequences of involuntary urinary and/or faecal leakage. Findings show that incontinence has a remarkably strong effect on caregivers' quality of life, because it results in progressive social isolation, causing them financial problems as well as psychological and physical exhaustion. The lack of appropriate support and the general silence regarding the problem, which is still considered a taboo by many, aggravate the caregivers' situation. It is therefore crucial that caregivers can count on a strong public and private support network, appropriate information and suitable incontinent products, in order to better handle incontinence and care tasks in general.
authors.affiliation: INRCA-National Research Centre on Aging, Via S. Margherita 5, 60124 Ancona, Italy. Electronic address: s.santini2@inrca.it.
authors.forename: Sara
authors.initials: S
authors.lastname: Santini
authors.affiliation: Örebro University Hospital, Department of Urology, Sweden.
authors.forename: Gunnel
authors.initials: G
authors.lastname: Andersson
authors.affiliation: INRCA-National Research Centre on Aging, Via S. Margherita 5, 60124 Ancona, Italy.
authors.forename: Giovanni
authors.initials: G
authors.lastname: Lamura
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D002648:Child; D017281:Cost of Illness; D005060:Europe; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D007558:Italy; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D018154:Slovakia; D018454:Spouses / Q000523:psychology*; D013548:Sweden; D014549:Urinary Incontinence / Q000523:psychology*
keywords: Caregivers’ burden; Incontinence; Isolation; Older people; Pad; Supports; Taboo