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S 14 Parallel Session
Programme of the Session
Title: Psychological, physical & social impact of renal disease
GS: Hilary Bekker (UK)
Enabling services to support patients making informed dialysis decisions
O 21
A clinic for young adults outside the hospital
Rikke Christensen (Denmark)
O 22
Burden on informal caregivers of haemodialysis patients
Cecile Soares (Portugal)
O 23
Understanding the psychology of illness – helping nurses understand their patient’s behaviour
Mike Kelly (Ireland)
Abstracts
GUEST SPEAKER
Enabling services to support patients making informed dialysis decisions
H.L. Bekker1
1School of Medicine, University of Leeds, Leeds, United Kingdom
Background
Clinical guidelines recommend kidney services deliver predialysis programmes to support patients with end stage kidney disease make dialysis choices. Predialysis services provide patient leaflets and education, and patients are satisfied with their kideny care, but they consistently report needing more support in making treatment decisions.
Objectives
This talk draws on the decision sciences to understand better what helps and hinders people make reasoned healthcare decisions. Using evidence from patient decision aid (e.g. The Dialysis Decision Aid Booklet – Kidney Research UK) and shared decision making evaluations (My Kidneys, my Choices – Kidney health Australia), it illustrates how patients and professionals can be supported to think differently about making dialysis decisions in the context of kidney disease management and their lifestyles.
Conclusion/Application to practice
It is likely integrating decision aids within usual care enables staff to meet service delivery guidelines on patient involvement more consistently within and across services. The discussion focuses on ways to support predialysis programmes pragmatically to adapt to changes in practice.
BIOGRAPHY OF THE GUEST SPEAKER
O 21
A clinic for young adults outside the hospital
J. Finderup1, A.F. Christensen1, R. Christensen1, B. Jespersen1, S. Ritting1
1Department of Renal Medicine, Aarhus University Hospital, Aarhus N, Denmark
Background
Young adults with kidney disease have a higher risk of losing their kidney function and have more challenges combining their daily life and their life with kidney disease. In Oxford they have a clinic for young adults outside the hospital where they have developed a network between the young patients supporting each other to manage life with kidney disease.
Objectives
To support young adults with kidney disease to have a good life and to decrease the loss of kidney function and to prevent rejection of the transplanted kidney caused by treatment non-adherence.
Methods
The young adult clinic outside the hospital has been developed in a collaboration between the young adults and the clinic in Oxford. The clinic has been evaluated qualitatively and quantitatively. The qualitative evaluation consisted of focus groups and individual interviews with the young adults, their parents and the healthcare professionals. The quantitative evaluation consisted of laboratory data.
Results
Four clinics have been held, every third month during a year and two weekend meetings. A Facebook group ”Pee-and-not-to-pee” have been made with daily activities. The main theme identified both by the young adults and the healthcare professionals are ”To be in the same boat”. The quantitative data is too small for statistical analysis at this point.
Conclusion/Application to practice
A young adult said: ”Before the young adult clinic, I experienced to be alone as a young adult with kidney disease. Now I have developed a lot with the experiences I have got, and I have become better to put words on how I am.
O 22
Burden on informal caregivers of haemodialysis patients
C. Soares1, J. Peixoto1, F. Vieira1, N. Coelho1, M. Bastos2, R. Peralta3, J. Fazendeiro Matos3, M.T. Parisotto4
1NephroCare Braga, Fresenius Medical Care, Braga, Portugal; 2NephroCare Arcos, Fresenius Medical Care, Arcos de Valdevez, Portugal; 3NephroCare Portugal, Fresenius Medical Care, Porto, Portugal; 4Care Value Management EMEA, Fresenius Medical Care, Bad Homburg, Germany
Background
Haemodialysis patients experience significant changes in their quality of life on a physical, emotional and social level, as well as the informal caregiver (IC). The IC provides care and assistance to others, usually to a person with whom a relationship already exists. This is done without any payment as an expression of love and affection.
Objectives
• To evaluate the physical, emotional and social burden on ICs of haemodialysis patients
Methods
To evaluate the physical, emotional and social burden on the ICs, a self-developed socio-demographic questionnaire, validated for the Portuguese population (QASCI) were used. Non-institutionalized ICs of haemodialysis patients for at least 6 months, who wanted to participate, did so.
Results
Burden of studied ICs was moderate (average score=34.61) (burden is absent=0, light=1-25, moderate 25-50, serious=50-75, extremely serious=75-100). There was no burden difference between females and males, except with regards to negative feelings such as the perception of being manipulated or the embarrassment of the experience, or the offense by the manifest behaviour of the family member, in this aspect women have a greater burden to bear. Concerning negative feelings and family support, the husband/wife, children or son/daughter-in-law felt less overloaded compared to other family member. ICs who provided informal care >10 years perceived a higher degree of burden because of a lack of knowledge and family support.
Conclusion/Application to practice
ICs feel physical overload, suffer emotional changes and limitations on their social life. As there is a demand on psychological coping mechanism, a psychological intervention to lessen ICs' perceived burden is important.
O 23
Understanding the psychology of illness - helping nurses understand their patient's behaviour
M. Kelly1
1Irish Kidney Association, Dublin, Ireland
Background
In understanding how patients behave we have to recognise that there is a wide variety of responses, in terms of perception, thinking and feeling when is diagnosed a chronic illness. Research over the past sixty years provides ample evidence showing that a diagnosis and treatment for chronic kidney disease has a significant psychological and emotional impact on patients.
As nurses, we don't have to be told that many of our patients experience, among other emotions, varying degrees of anxiety, stress and depression at points in their dialysis journey. In their day to day interaction with patients, nurses are often confronted with these, often debilitating, psychological reactions. In patients,the feeling of anxiousness, stress or depression, can undermine their ability to accommodate to their illness with the subsequent knock on effect that this has on their day to day life and of their family.
Conclusion/Application to practice
Having some understanding of the psychological aspect of illness, allows nurses to;
• reframe how they view their patients and in this way enhance the service they provide
• create a space to think through their patients' behaviour and offer an appropriate response
• understand the patient's behaviour in a way that conveys to the patient that their concerns are heard and understood, thereby alleviating to some degree the psychological reaction that the patient is experiencing
• offer an appropriate response or refer on to an appropriate allied health professional
BIOGRAPHY OF THE SPEAKER