Perceptions on Well-being at Home of Families with People with Disabilities: A Psycho-Environmental Perspective

Delphine Labbé, PhD1,2

Sylvie Jutras, PhD1

1Université du Québec à Montréal2University of British Columbia

2

Well-being at home

For people with and without disabilities Place to fulfill individual and familial needs Promotes an active and independent role in the

community Physical and psychological health Commitment to work, social and civic life

Internationally recognized as a right by the Convention on the Rights of Persons with Disabilities (United Nations, 2006)

Despite the importance of home for people with disabilities Few studies on home, health and disabilities Not focused on the broad spectrum of needs

3

Psycho-environmental Potential Model

Shelter and Security

Protection from physical elements and threats to the person’s well-being

Social Contact

Facilitation or inhibition of interpersonal contact and privacy

Symbolic Identification

Information about the values, preferences and goals of the users

Task Instrumentality

Quality of equipment and spatial arrangements for the accomplishment of specific tasks and activities

Pleasure Gratification of simply being in a given setting and the user’s positive affect

Growth Various stimuli allowing users to learn things about the world and themselves

6 functions promoted or limited

4

Objectives

Explore the perception of the relation between the house and the well-being

Globally For specific places

5

Method

Participants

Individual CharacteristicSCI(n=3

1)Relatives (n=31)

Mean Age 45 51Man (%) 71 29 In couple (%) 68 81 Working or Studying (%) 29 60

Mean time since injury

8 years (SD=1.9)

Paraplegia (%) 48 

6

Housing and household

characteristics (n=31)

Number of people in the household (mean)

3

Relationship to the person with SCI (%)

Spouse

71

Child or

parent

29 

Moved after the injury

55

Mean number of years living in the house

9

7

Interviews

Simultaneously but separately with the SCI person and their household member

Closed and open-ended questions Series of 11 questions about the favourable physical

features of their house and how these features contributed to well-being at home

Series of 10 questions on unfavourable physical features of the house and how they hampered well-being at home

8

Results

Places and objects favourable to well-being

SCI and relatives

SCI Relatives

8 places and 7 objects mentioned

Global

9

Plac

esO

bjec

ts

How well-being at home is promoted?

Great variety of explanation (n=27)

SCI a

nd

rela

tive

s

• Territoriality • Using and developing skills• Activities with others

SCI

• Convenient for work and leisure• Learning about

the worldRe

lati

ves

• Size• Privacy

10

Global

11

Places and objects unfavourable to well-being

For45 % : No places or objects

Plac

esO

bjec

tsGlobal

SCI and relatives

SCI Relatives

12

How well-being at home is hampered?

Lack of convenience for moving around

Inconvenience of sizePsychological and physical disinvestment

Lack of convenience for daily living activities

GlobalSC

I and

re

lati

ves

SCI

Rela

tiv

es

13

How each places contributes to well-being at home?

The kitchen is an open space, so

it’s an enjoyable place to

entertain friends and family. It’s

where we spend most of our

time. Everything is within reach, if we need to cook while talking to someone, it’s

easy (SCI20, male 62, retired)

Specific to place

KitchenSCI Relative

Open spaceActivities with others

AmbienceConvenient to move

around Appropriate sizeAppropriate layout

Developing and using skillsEasiness of communication

Equipment easy to reach Expression of self

Common space TerritorialitySatisfaction of needs

14

How each places limits well-being at home?

Kitchen

SCI RelativesStove

Limit development and use of skillsinadequate to fulfill

their needs Common spaceInappropriate size

Lack of convenience for domestic activities Lack of convenience to

move around Life conditions

Specific to place

I like to sew but I can’t use the

table anymore to cut my fabrics; it’s not large

enough […] and my husband sits there watching me! He always has to go to the bathroom when

I’m cutting a piece of fabric.

So, it’s not easy.” (FM27, female,

47 years old, spouse, working)

15

Conclusion

16

Well-Being at home

1. Positive experience multifaceted2. Negative experience more limited3. Importance of specialization of room4. Experience of people with SCI and

their relatives Similar but touched differently by the

disabilities

17

Well-being at home

Variation in wished level of contact Designing flexible space

Social contacts highly

important

Impact on accessibility

guide

For everyone

Well-being at home

For people with disabilities

Task instrumentali

ty highly important

Home is central for

social participation

Well-being at home

19

For the relatives

Symbolic identification

restricted

Impact of disability

needing more consideration

20

Thank You

This research was supported by