The challenge of maintaining personal dignity in the nursing home

A qualitative study among Dutch nursing home residents

¹ Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Expertise Center for Palliative Care,

VU University Medical Center, Amsterdam, The Netherlands ² Department of Nursing Home Medicine, EMGO Institute for Health and Care

Research, VU University Medical Center, Amsterdam, The Netherlands³ Department of General Practice, Division Clinical Methods and Public Health,

Academic Medical Center/University of Amsterdam, Amsterdam, The Netherlands

Contact: m.oosterveld@vumc.nl

RESEARCH HIGHLIGHTS

• Nursing home residents do not consider living in a nursing home in itself to be unworthy; they see it as a consequence of being ill or frail• Many nursing home residents feel discarded by society and stigmatized simply because of their illness or age• Aspects of nursing home care can hamper a resident’s personal dignity, but good professional care can preserve it as well

Mariska Oosterveld-Vlug, MSc¹Roeline Pasman, PhD¹ Isis van Gennip, MSc¹Martien Muller, PhD²

Dick Willems, MD, PhD³Bregje Onwuteaka-Philipsen, PhD¹

METHODS

Study population

30 recently admitted nursing home residents on the

somatic wards of 4 nursing homes in the Netherlands.

Data collection and analysis

• In-depth interviews using a topic list (May ‘10 to June ‘11). • Interviews were recorded, transcribed literally and analyzed using Atlas-ti software.• Codes were organized according to the themes in the ‘generic model of dignity in illness’ (Van Gennip et al., 2012), because open coding revealed considerable overlap with the themes in this model.

AIM

To gain more insight in the way Dutch nursing home residents experience their dignity and the factors that hamper or preserve this.

BACKGROUND

Nursing home residents are exposed to diverse factors which may be associated with loss of personal dignity: they experience functional incapacity, are heavily reliant on nurses, have little privacy and few belongings. To help them withstanding these threats, it is important to investigate the concept of dignity from the residents’ perspective.

I feel that impatient haste with which they do everything, they are kind of jumping about next to you, desperate to move on. It’s a routine and that’s their approach to everything. I do find that inattentive, I do think it makes the patients feel less dignified. You mustn’t forget you are dealing with a gentleman.Man, 88; CVA, problems with kidney

I’m proud of the fact that here in the home they take people’s feelings into account. They don’t do that everywhere. So if they wash you, that means that they do it properly, that they don’t do a rush job and then off they go again and now you have to eat because it’s meal time. No, they do it all very properly, you know. Attentively.Woman, 75; hydrocefalus

You notice that when you get old, people stop taking you seriously: “That person’s so old, we’ll just park him in a corner then he won’t bother us any more.” That’s often what happens. You no longer count. Young people today are more concerned with their own things than with all those old people. They’re really not interested in all that whining. They don’t want anything to do with you. Woman, 85; arthrosis

RESULTS

Dignity hampered because of functional incapacity rather than because of living in a nursing home

The fact that residents were admitted to a nursing home was not degrading in itself, but seen merely as an inevitable consequence of having lost functional capacity:

RECCOMENDATION FOR PRACTICETo support residents in their challenge of maintaining dignity, nursing home staff, relatives and society should pay more attention to the way they address and treat residents.

Yes, this is a completely different kind of life, you don’t really have a life. Lying there all day, it’s not really a life the way I am now. That’s because of my illness. It’s got nothing to do with the nursing home. My illness, that’s the source of all the misery. Otherwise I wouldn’t be lying here. I’m glad there are such things as nursing homes. It would be a sorry state of affairs if they weren’t there. If they weren’t there, it would be undignified.Man, 66; amyotrophic sclerosis

Violation of dignity caused by feeling discarded and stigmatized by society

By living in a nursing home, many residents believed they were no longer part of society. In getting older and less able to function, they felt stigmatized by society, e.g. when other people treated them as if they were insane:

Nursing home aspects that hamper personal dignity

For example, having to wait for help and a dearth of time and attention from nursing staff could violate dignity:

Nursing home aspects that preserve personal dignity

Good professional care (e.g. being treated with respect, being taken seriously and receiving good quality care) could prevent dignity from being violated: