The Struggle for Dignity by People with Severe Functional Disabilities

Abstract

The purpose of this study was to investigate what strategies people with severe functional disabilities who receive personal assistance in their homes use in their daily life to achieve autonomy, integrity, influence and participation. Qualitative interviews were carried out and subjected to qualitative latent content analysis. The main finding was expressed in terms of six subthemes: trying to keep a private sphere; striving to communicate; searching for possibilities; taking the initiative; striving to gain insight; and using one's temperament. These generated the overall theme: maintaining dignity in close relationships. This study contributes an understanding of the strategies used by people who are dependent on personal assistance. Future efforts in nursing must focus on supporting personal assistants with ethical knowledge and guidance in order that people with severe functional disabilities are empowered to achieve autonomy, integrity, influence and participation in their daily lives.

Family members’ experiences of personal assistance given to a relative with disabilities

“…The security of having a limited number of people as assistants also contributes to increased satisfaction. These findings are in accordance with the family members’ relative with a disability which was included in a previous study by Wadensten and Ahlström (2009a). In that study several problems were associated with personal assistance but these were outweighed by the freedom of movement and security it gives.…”

“…The study design was qualitative and descriptive, based on in‐depth interviews with family members. The study was part of a comprehensive project focusing on personal assistance and the life conditions of persons with severe neurological disease who were receiving personal assistance (Ahlström 2006, 2007, Ahlström & Wadensten 2009, Wadensten & Ahlström 2009a,b). Diagnoses and demographic characteristics of the person with a disability who received personal assistance are presented in previous papers (Ahlström 2006, 2007).…”

“…The sample was drawn from a county in central Sweden (about 274 000 inhabitants), and the persons were identified through the county council rehabilitation service, the municipal welfare service and two major private offices for personal assistance. Thirty persons with permanent severe disabilities who had participated in previous studies (Ahlström 2006, Wadensten & Ahlström 2009a,b) were asked if they were willing to let us contact one close family member regarding participation in this study. Those who accepted gave the name and address of one family member.…”

Enjoying Work or Burdened by it? How Personal Assistants Experience and Handle Stress at Work

“…Results from such studies have shown that a good relationship is very important (Ahlstrom, 2006;Ahlstrom & Wadensten, 2009;Matsuda et al, 2005;Wadensten & Ahlstrom, 2009a;Wadensten & Ahlstrom, 2009b). Marquis and Jackson (2000) found that the interpersonal qualities of personal assistants are more important to the disabled person than their technical skills are.…”

Dignity in care: where next for nursing ethics scholarship and research?

“…Nurse researchers, in particular, have conducted a wide range of qualitative research studies engaging patients and professionals to develop in-depth perspectives and discussions regarding the meaning and implications dignity in care (43)(44)(45)(46)(47)(48)(49)(50)(56)(57)(58) . There has also been some quantitative work in this area (51) .…”