Quality of Life and Stress in Wheelchair-Users

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.

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.