Abstract:
Many diseases and injuries result in the need for either temporary or permanent wheelchair use and research now confirms that multiple dimensions of life are affected when significant disability occurs. These dimensions typically include increases in health concerns and health care burden; loss of functional independence; reduced participation in social, occupational and recreational opportunities; and subsequent association with psychosocial sequelae. This chapter summarizes current literature on Quality of Life (QoL) in wheelchair-users. The review highlights that a wide range of generic QoL, health-related QoL and disability-specific QoL instruments are used across studies with largely inconsistent findings. There is now a growing movement towards the development of valid and reliable measures for use with people with a range of disabilities. Given the observed challenges of measuring the broad QoL construct in populations of wheelchair-users, more specific aspects of QoL such as levels of stress are now being investigated. It is proposed that these more specific QoL domains may be more accessible to measurement and to therapeutic interventions aiming to improve adjustment to disability. The development of the Physical Disability Stress Scale (PDSS) is described with recommendations for future clinical and research application. A copy of the PDSS and its scoring instructions are appended.
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Abbreviations
- AAQ:
-
amount of assistance questionnaire
- ADL:
-
activities of daily living
- ALE:
-
appraisal of life events scale
- CHART:
-
the craig handicap assessment and reporting technique
- COPM:
-
Canadian occupational performance measure
- DIP:
-
disability and impact profile
- EDSS:
-
expanded disability status scale
- EQ-5D:
-
EuroQol-5D
- FIM:
-
functional independence measure
- GHQ-28:
-
general health questionnaire-28
- HADS:
-
hospital anxiety and depression scale
- HrQoL:
-
health-related quality of life
- HUI-II:
-
health utilities index II
- IAM:
-
instrumental activity measure
- ICF:
-
international classification of functioning, health and disability
- LSQ:
-
life satisfaction questionnaire
- MS:
-
multiple sclerosis
- NA:
-
not applicable
- NHP:
-
Nottingham health profile
- PASIPD:
-
the physical activity scale of individuals with physical disabilities
- PCA:
- PDSS:
-
physical disability stress scale
- PIADS:
-
psychosocial impact of assistive devices scale
- PPS:
-
post-polio syndrome
- QoL:
-
quality of life
- QoLI:
-
quality of life index
- SCI:
-
spinal cord injury
- SCI QL-23:
-
spinal cord injury quality of life questionnaire-23
- SCIM-III:
-
spinal cord independence measure-III
- SD:
-
standard deviation
- SF-36:
-
short form-36
- SQOL:
-
subjective quality of life scale
- SWLS:
-
satisfaction with life scale
- WHO:
-
World Health Organization
- WHOQoL:
-
World Health Organization Quality of Life
- WHOQoL-BREF:
-
World Health Organization Quality of Life-BREF
- WHOQoL-Group:
-
World Health Organization Quality of Life-Group
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Appendices
Appendix 1: Physical Disability Stress Scale
Below is a list of situations that are generally found to be stressful or upsetting for people with physical disabilities. Please think about each situation and circle a number 1, 2, 3, 4 or 5 to indicate how stressful or upsetting the situation has generally been for you.
Note: If the situation does not occur for you please circle NA for Not Applicable. If the situation does occur, but is Not At All stressful or upsetting please circle 1.
Situation | How stressed/upset did you get? | ||||||
---|---|---|---|---|---|---|---|
Not at All | Slightly | Moderately | Considerably | Highly | |||
Think of the times……… | |||||||
1 | When you have been unable to travel independently due to inaccessible places | 1 | 2 | 3 | 4 | 5 | NA |
2 | When you have not been invited to social activities as much as you used to be | 1 | 2 | 3 | 4 | 5 | NA |
3 | When you have been carried up or down stairs | 1 | 2 | 3 | 4 | 5 | NA |
4 | When people have tried to help, but have made things more difficult | 1 | 2 | 3 | 4 | 5 | NA |
5 | When private issues have been made public to doctors, nurses, family, friends | 1 | 2 | 3 | 4 | 5 | NA |
6 | When you have used a taxi service | 1 | 2 | 3 | 4 | 5 | NA |
7 | When your disability has affected your relationships/friendships | 1 | 2 | 3 | 4 | 5 | NA |
8 | When you have had to deal with carers or helpers | 1 | 2 | 3 | 4 | 5 | NA |
9 | When you have not been able to do some activities you used to enjoy | 1 | 2 | 3 | 4 | 5 | NA |
10 | When others have not recognized your sexual identity or sexual desires | 1 | 2 | 3 | 4 | 5 | NA |
11 | When you have had to rely on others for help | 1 | 2 | 3 | 4 | 5 | NA |
12 | When your disability affected the development of intimate or sexual relationships | 1 | 2 | 3 | 4 | 5 | NA |
13 | When you have had to manage a number of health care needs | 1 | 2 | 3 | 4 | 5 | NA |
14 | When you have arrived at a place that has stairs, but has no ramps or elevators | 1 | 2 | 3 | 4 | 5 | NA |
15 | When you have been unable to physically help with manual jobs | 1 | 2 | 3 | 4 | 5 | NA |
16 | When others have seen you as a person in a wheelchair before they have seen the person you really are | 1 | 2 | 3 | 4 | 5 | NA |
17 | When you have been unable to physically move the way you used to move | 1 | 2 | 3 | 4 | 5 | NA |
18 | When your health care needs have required time and energy | 1 | 2 | 3 | 4 | 5 | NA |
19 | When you felt there was nothing you could do to change things | 1 | 2 | 3 | 4 | 5 | NA |
20 | When others have not considered your needs or abilities | 1 | 2 | 3 | 4 | 5 | NA |
21 | When you have been unable to physically help others when they need it | 1 | 2 | 3 | 4 | 5 | NA |
22 | When you have been told a place is accessible, but find it isn’t accessible | 1 | 2 | 3 | 4 | 5 | NA |
Not | Not | Somewhat | Moderately | Quite | Very | ||
Generally, how well do you feel you manage the day-to-day stressful events of | Well | Well | Well | Well | Well | ||
having a physical disability? | 1 | 2 | 3 | 4 | 5 | NA |
Appendix 2: Physical Disability Stress Scale – Scoring Instructions
2.1 Scoring
There are 4 Subscales and a Total Score on the Physical Disability Stress Scale (PDSS). In order to obtain Subscale scores simply add the scores on the items which are indicated for each Subscale. The Total Score is the sum of all scores on all items. NA (Not Applicable) registers a score of zero.
Subscales and Total Score | Items | Range of Scores |
---|---|---|
ACCESS–4 Items | 1-3-14-22 | 0-20 |
PHYSICAL–5 Items | 9-15-17-19-21 | 0-25 |
SOCIAL–7 Items | 2-5-6-7-10-12-16 | 0-35 |
BURDEN OF CARE–6 Items | 4-8-11-13-18-20 | 0-30 |
TOTAL SCORE–22 Items | All items | 0-110 |
2.2 Interpretation
High scores on a PDSS Subscale indicate high stress; low scores indicate low stress. As there are unequal numbers of items on each Subscale, high scores on a Subscale that has more items does not necessarily mean greater stress on that Subscale compared to the scores on a Subscale that has fewer items. Subscale means can be conducted if desired.
PDSS Subscales are most useful for:
-
Treatment planning.
-
pre- and post-functioning (e.g. comparison of Access scores pre-intervention with Access scores post-intervention).
-
Comparisons of the original normative data (see Table 238-4 ) with obtained PDSS scores.
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Furlong, M., Connor, J. (2010). Quality of Life and Stress in Wheelchair-Users. In: Preedy, V.R., Watson, R.R. (eds) Handbook of Disease Burdens and Quality of Life Measures. Springer, New York, NY. https://doi.org/10.1007/978-0-387-78665-0_238
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