Skip to main content

Table 2 Important areas of quality of life as described by the participants (n = 61). Data collected with a modified version of the Schedule for the Evaluation of Individual Quality of Life - Direct Weighting

From: Pain, disease severity and associations with individual quality of life in patients with motor neuron diseases

Areas Description of area content Examples of participants’ quotations.
Social relations
n = 47
Social contacts, relations and interactions that make one feel happy, comfortable and taken care of, also including the possibility to care for other people. “To be with my friends, the social part, to laugh and hang around” (37)a
The importance of collegial fellowship. “To take and give love with my children” (7)
“The family and my friends - often contact and are close” (50)
“My marriage - the thoughtfulness and full of fun” (58)
“The work - the community (28)
Activities for amusement and relaxation
n = 27
Engagement in hobbies e.g. relaxing activities, entertainments at the theatre or sport events, watching TV, reading books, Internet browsing, listening to music, daydreaming, singing, taking photographs. “ Cross-word to activate the brain” (56)
“Theater visit - the entertainment” (9)
“Listen to music” (18)
“Take pictures to get the perfect picture” (36)
“Watch sport on TV” (39)
“Listen to a book” (48)
“Needlework” (57)
Being in the outdoor environment
n = 19
Activities in the outdoor environment and nature e.g. fishing, berry picking. “Walk in the nature with the dog, love the nature” (47)
Being independent
n = 13
Being able to decide things by yourself and transport myself. “To feel free and make own decisions” (7)
“The car - a sense of freedom to transport oneself without help” (16)
Being able to work
n = 11
Having an occupation with daily routines. A sense of coherence; feeling important and capable at work. Better economy. “The work - do something meaningful” (15)
“The work - better economy” (6)
“Manage to work, to have something to do” (59)
“The work - to be someone and discuss (41)
Being physically active
n = 11
The ability to be physically active “To be able to perform the daily exercise” (40)
Access to support and aids
n = 10
Having access to support from health-care, including personal assistance, psychological support and aids “Aids - BiPAP, cough assist, indoor wheelchair facilitates physically and psychologically” (33)
“That people around me make it possible for me to feel free” (7)
Get along with daily inconveniences
n = 9
Being happy of things that work in the daily life and appreciation of being spared from e.g. a cold, pain or other discomforts. “To feel pretty good, meaning not too much nausea or too much pain” (34)
“To be able to eat without too much problem with mucus” (22)
“To not have a cold” (23)
“Be able to talk” (46)
Being in good health
n = 7
Feeling as good as possible “To feel well inside and have a good mood” (1)
A safe and comfortable home environment
n = 6
Feeling comfortable and secure at home, both indoors and outdoors, for both oneself and others. “The home – with its safety and stability” (39)
“That everyone feel comfort with our home environment” (27)
“A good house close the nature” (61)
A safe home with food for the day, where the wife is cooking” (26)
The cottage
n = 6
The sense of peace and satisfaction from being at one’s cottage. “My cottage – a sense of happiness and freedom” (41)
Enjoying good food and drinks
n = 5
To enjoy and cook good food and drinks including eating at restaurants. “Go to restaurant and eat good food (50)
“Cook good tasted food” (36)
“The food and wine” (48)
Being able to travel
n = 5
The joy of making a journey. “Travel and experience other environments and people” (6)
Domestic care and family responsibilities
n = 3
Being able to take care of household chores and the family. “Manage the household which works today, vacuum-clean, dishwasher and washing machine” (60)
A pet
n = 2
The happiness, security and joy that comes with having a pet to care for “My dog - welcoming and happy to see me” (37)
“The dogs and the cat gives security” (30)
Hope for the future
n = 2
To have a hope for the future. A belief that things will be sorted out e.g. faith in research “Surf on the net regarding the disease - gives hope” (10)
Physical contact
n = 3
Experience of physical contact, body touch and sex “Physical contact, body contact” (33)
“To have sex” (13)
Having a philosophy of life
n = 1
A philosophy of life which gives comfort “The Christian faith gives comfort” (29)
Being alone
n = 1
  “Be by myself.” (4)
  1. aThe number in the parenthesis represents the participant code