OPEN Research Support
head

Development nurse
Laila Twisttmann Bay
Department of Rheumatology, Odense University Hospital


Projekt styring
Projekt status    Sampling ongoing
 
Data indsamlingsdatoer
Start 01.05.2016  
Slut 30.09.2019  
 



Vulnerability in Life with Rheumatoid Arthritis. Patients' Perception of Illness, Treatment, Sexuality and Social Life

Short summary

The overall purpose of this project is to gain knowledge about patients´ experiences of vulnerable situations in life with rheumatoid arthritis (RA). A central focus is the adult patient's perspective of treatment, social life and sexuality in life with RA, and how these elements possibly have impact on vulnerability in the patient's everyday life.


Rationale

Background:

Living with rheumatoid arthritis (RA) means lifelong treatment, where Methotrexate

(MTX) is the first choice of treatment. Treatment is vital for mortality and for the way fatigue, pain, stiffness and joint swelling is experienced. Yet the treatment includes several side-effects and precautions that can discourage patients to adhere to treatment.

Lack of adherence has been examined in some studies, but no studies have combined different scientific methods to gain a more complex picture of illness and treatment and how this possibly places the patient in a vulnerable position.

Vulnerability can be present in relation to social life and loneliness since living with arthritis can cause changes in social relations, family structures and in intimate relations.

Self-perceived loneliness and everyday life with RA have been addressed in very few studies, and the same is true for how male patients´ sexual function and sexual experiences can be challenged and affected by a life with RA.

The study will address the patient´s perspectives on vulnerable positions and situations in everyday life and in the encounter with the health care system.

Purpose:

The overall purpose of this project is to gain knowledge about patients´ experiences of vulnerable situations in life with rheumatoid arthritis (RA).

A central focus is the adult patient´s perspective of treatment, social life and sexuality in life with RA, and how these elements possibly have impact on vulnerability in the patient´s everyday life.


Description of the cohort

The participants in the study will be recruited from the outpatient department of rheumatology at OUH. We are including adult patients diagnosed with rheumatoid arthritis and we are including both men and women.

The participants are searched forward in the electronic patient registry in study 1 and 3. In study 2, the participants are recruited through social media, patient organizations and local newspapers.

The participants must be able to read, understand and speak Danish.


Data and biological material

Study 1 uses journal evaluation combined with individual interviews.

Study 2 uses individual interviews.

Study 3 uses 2 validated questionnaires combined with focus group interviews.


Collaborating researchers and departments

 Department of Rheumatology, Odense University Hospital

  • Professor and Head of Research Torkell Ellingsen, MD, PhD

Department of Infectious Diseases, Odense University Hospital

  • Associate Professor Dorthe S. Nielsen, MHS, PhD

Sexology Research Centre, Clinical Institute, Aalborg University

  • Professor Christian Graugaard, MD, PhD

Sexological Clinic Psychiatric Centre, University of Copenhagen

  • Professor and Head of Research Annamaria Giraldi, MD, PhD