Preliminary study Lajos Kullmann1 and Katalin Tóth1,2

1Lorand Eotvos University, Faculty of Special Education, Budapest2National Institute for Medical Rehabilitation, Budapest

Personal quality of life goals – how to learn those for assisting

rehabilitation

Background• Øivind Lorentsen reported on the elicitation of user

potentials in the rehabilitation process. • The user was allocated a personal communication

facilitator, providing a platform of trust and confidence. No predefined questions used to prevent distortion of the communication in directions not meeting the individual client. However, communication memorizer with keywords related to life areas and domains of quality of life, as well as to rehabilitation implications, and references for prioritization and assessment of goal attainment were used.

Lorentsen Ø. Elicitation of user potentials and resources in the rehabilitation process. Int J Rehabil Res 2007; 30, Suppl 1: 20-21.

Objectives• Trial use of a recently developed quality of life

assessment scale: WHOQOL-BREF and Disabilities Module as guideline for personal interviews

• To study the ethical dilemmas related to early inclusion of clients into the interviews

• To study feasibility of the methodology and possible outcomes among people after SCI

Power MJ, Green AM, The WHOQOL-Dis Group. Development of the WHOQOL disabilities module. Qual Life Res 2010; 19: 571-584.

Ethical dilemmas• Traditional ethical paradigm: principlism

– autonomy – justice – beneficence – respect

• Phenomenology approach: discovery and description of experiences– lived experiences of clients as they navigate through

rehabilitation– changing goals, often metaphors used

Haas J. Ethical considerations of goal setting for patient care in rehabilitation medicine. Am J Phys Med Rehabil 1993; 27(4): 228-232. Greenfield B: Phenomenology: An alternative ethics in rehabilitation: A commentary. Amer J Phys Med Rehabil 2009; 88: 955-958.

Ethical dilemmas• Decision making capacity

– understand the nature of research during eventual temporary cognitive deficits due to psychological shock and grieving

• Timing of subject requirement– clients may need time to readjust to new life

situation before giving informed consent– the research goal may require early inclusion– finding balance

Blackmer J: The unique ethical challenge of conducting research in the rehabilitation medicine population. BMC Medical Ethics 2003; 4(2): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC165586/ (2011.01.14.)

Methods• Inclusion criteria: every firstly admitted patient

with SCI at the National Institute for Medical Rehabilitation above 18 years, giving consent

• Exclusion criteria: serious communication or cognitive problems, illiteracy

• Acquainting, structured interviews at bilaterally agreed-upon date, based on WHOQOL-BREF and Disabilities Module

• Research Ethics Committee approval obtained

The measure

WHOQOL-BREF•Overall quality of life•General health•4 facets (24 items): physical, psychological, social, environmentalDisability module•Disability effect on life•12 items Validated Hungarian version available

Paulik E, Tróznai T, Kullmann L. Fizikai fogyatékossággal élő személyek életminőségének vizsgálata: az Egészségügyi Világszervezet életminőség-mérő eszközének adaptációja. Rehabilitáció, 2010; 20(3): 134-141.

Study populationAge, years 48.1 (19-71)

Gender

female 21

male 14

No of affected limbs

two 24

four 11

Cause of SCI

accident (falls, motor vehicle) 14

illness (tumour, herniated disc, vascular) 21

Experiences • After admission time is needed for the clients to

develop helping relationship with interviewer, e.g. we start the interviews in a flexible way, so far between 8 and 49 days (median 17) after admission

• Information gained from interviews is much more detailed and personalized than from filled in QoL measures (female, 33 years, car accident, CV and CVII)– „How well are you able to get around?”

Measure: very poorInterview: „I can’t get around yet. … My aim is self-support. I would rather prefer not to be in a wheelchair. This is a question of future.”

Experiences • For some participants the interview was tiring, it

brought the first serious confrontation with their situation (male, 35 years, tumour, DII-IV)– The most difficult question: „To what extent do you feel

your life to be meaningful?”Measure: answer missingInterview: „It has a meaning. There are my children. I feel it. … I am responsible for my family”

– The question causing greatest resistance: „How much do you enjoy life?”Measure: answer missingInterview: „How can one enjoy life in a wheelchair? In no way as I see”

Experiences

• Most of the interview participants felt participation in the interview useful. Two typical answers: – “It was good to think over. One does not always

consider their actual position.” (Male, 68 years, fall, CV-VI)

– “What you have asked is already in the mind of all of us in this unit. As I see it’s inspiring for all those who would like to make changes. One recognises the need of change.” (Female, 28 years, car accident, CVI-VII)

Conclusions

• We regard WHOQOL-BREF and Disabilities Module as an appropriate tool for interview guideline at exploring quality of life goals.

• Clients have appreciated the possibility offered by the interviews to consider their life situation.

Acknowledgement

The project was supported by the European Union and co-financed by the European Social Fund (grant agreement no. TÁMOP 4.2.1/B-09/1/KMR-2010-0003)

I would be grateful receiving your comments

THANK YOU FOR YOUR KIND ATTENTION