http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, 2014; 36(18): 1562–1571 ! 2014 Informa UK Ltd. DOI: 10.3109/09638288.2013.854839
EDUCATION AND TRAINING
Life situation of adults with congenital limb reduction deficiency in Sweden Lis Sjo¨berg1,2, Ylva Nilsaga˚rd2,3, and Carin Fredriksson2 1
¨ rebro University Hospital, O ¨ rebro, Sweden, 2School of Health and Medical Department of Paediatrics, Limb Deficiency and Arm Prosthesis Centre, O ¨ rebro University, O ¨ rebro, Sweden, and 3Centre for Health Care Sciences, O ¨ rebro County Council, O ¨ rebro, Sweden Sciences, O
Abstract
Keywords
Purpose: To describe the current life situation of adults with congenital limb reduction deficiencies (CLRD), living in Sweden, regarding their main daily occupation, leisure activities and self-reported general health. Methods: A cross-sectional survey was conducted using a study-specific questionnaire, sent by post. Hundred and seventeen persons with different extent, forms and levels of CLRD (mean age 33 years) responded to the questionnaire. Results: Work or study was the main occupation for 86% of the participants and 50% had completed a college or university education. About 7% were unemployed and 3% were on sick leave. The participants were highly involved in social and physical activities during leisure time. The majority reported good or very good general health. Conclusion: This study is the first investigation of the life situation of adults with CLRD described with a perspective from Swedish society. The participants were educated and worked to a great extent, which corresponds well to the Swedish population as a whole. Further research is needed, especially with a focus on the internal perspective of life situation, different aspects of work capacity, occurences of strain injuries and the benefit of assistive devices among adults with CLRD.
Adults, congenital limb reduction deficiency, daily occupation, life situation History Received 7 February 2013 Revised 26 September 2013 Accepted 9 October 2013 Published online 18 November 2013
ä Implications for Rehabilitation
People with CLRD require a health care system with a multi-professional rehabilitation team offering regular contact during their life time. Educational system offering study counselling on all education levels (from primary school to university) is an important type of support for people with any kind of deficiency, in order to find suitable education and profession. Work is of importance for an acceptable life situation. Rehabilitation for people with CLRD should emphasise facilitating their ability to work, through engagement in individual personal capacity and self-efficacy. The majority of people with CLRD are users of prostheses and assistive devices. The benefits of the devices are basic but the rehabilitation should also include aspects of usability and use worthiness for individuals in performing their daily activities.
Introduction Congenital limb reduction deficiency (CLRD) is one of the 10 most common and visible birth defects in Sweden [1]. In 2010, the incidence was 6/10 000 births, a prevalence of 50 children a year [1,2]. Surveillance of CLRD exists in large parts of the developed world and incidence is commonly reported at 2–7/ 10 000 births [3,4]. There are no trends over time and the potentially disabling conditions affect the life situation, the health and the well-being of persons worldwide [3].
Address for correspondence: Lis Sjo¨berg, School of Health and Medicine ¨ rebro University, SE 701 82 O ¨ rebro, Sweden. Tel: +46 19 30 Sciences, O 35 85. E-mail: [email protected]
People with CLRD form an etiologically heterogeneous group, and the anomalies range from mild unilateral to severe multiple limb reductions defects [2,4,5]. Upper-limb reduction is twice as common as lower limb reduction [3,4]. The causes are in most cases unknown [2], but can be due to vascular disruptions, genetic variations, teratogenic exposure [3,4] or in association with constriction band syndrome [6]. The thalidomide tragedy, 50 years ago, caused severe, usually bilateral limb reduction deficiencies in many children [4]. Swedish children, born with CLRD, usually join a rehabilitation centre in their county. The majority also join one of the four Limb Deficiency Centres with constituted, specialised clinical multidisciplinary teams. Examinations of limitations are important to confirm choices of interventions in order to minimize negative consequences of the CLRD. To gain knowledge of how people with CLRD develop and live their lives there is a need to investigate their current life situation.
Life situation of adults with limb reduction
DOI: 10.3109/09638288.2013.854839
Life situation A life situation consists of a biological and psychological organism in interaction with the social environment divided into five dimensions [7,8]. The present study focuses on three of them; the biophysical, the socio-cultural and the intellectual. One of the most obvious manifestations of a person’s development over a life span is engagement in different occupations in different social environments [9]. Fifteen per cent of the Swedish population, aged 16–64 years, have some kind of disability [10]. Of these, 450% have a reduced work capacity and the level of education within this group is lower than among the population as a whole [10]. Children with CLRD normally begin school based solely on their age but their need to take time for health service utilization may negatively affect their progress in school [11]. To our knowledge, there are no studies published about adults with CLRD, their level of education and situation on the labour market. Involvement in leisure activities that provide some kind of doing, belonging and self-understanding enables people to find meaning in life [12]. Adolescents with congenital physical disabilities tend to participate in passive leisure activities [12], but whether this can be transferred to adults with CLRD has yet to be explored. The psychosocial functioning of children and adolescents with CLRD appears to be comparable to healthy peers [13] and the use of prosthesis can greatly increase psychological health and wellbeing [14]. Young women, with CLRD, show strategies to cope with people’s attitudes in situations of everyday life [15] and adolescents with lower limb deficiencies are characterized by less participation in social and skill-based activities [16]. Swedish adolescents (8–18 years), with CLRD, report a good healthrelated quality of life, but some social stigma needs to be further investigated [17,18]. Children with CLRD will grow up with this chronic defect and their parents are very often concerned about their child’s future, i.e. their ability to perform daily activities, educational choices and professional possibilities. Health care professionals have limited possibilities to answer these questions due to the gap in knowledge about how adults with CLRD live their lives. The purpose of this study is therefore to describe the current life situation of adults with CLRD in Sweden, in terms of educational level, main daily occupation, work situation, leisure activities, use of assistive devices, general health and thoughts about the future, in relation to gender and age. In this study, ‘‘occupation’’ is defined as ordinary and familiar things that people do every day [19,20]. ‘‘Work’’ is defined as engaging in all aspects of work for payment, including self-employment, part-time and full-time employment [21], and finally ‘‘leisure activities’’ refer to informal or organised unpaid engagement and occupation [21].
Methods Design A cross-sectional survey was conducted with the use of a studyspecific questionnaire. Data were collected during May and June 2011.
from Statistics Sweden, a collection of statistical information from the Central Bureau of Statistics in Sweden [10,22], and from an investigation of living conditions and health [23], in five Swedish county councils. The questionnaire was scrutinized for comprehensiveness by health care professionals (n ¼ 4) with expertise in relation to the target group. The structure and answerability were then tested by persons outside the health care and medical service, three men and three women, 20–67 years of age, representing different social groups without CLRD. The questions regarding type of CLRD and use of technical devices were tested on two persons with CLRD who did not participate in the survey. Adjustments were made according to the comments and suggestions that followed. The final version included 37 questions, many of them with multiple sub questions (Appendix). The questions included demographic features, information about the CLRD, level of education, main daily occupation, work situation, leisure activities, health condition and thoughts about the future. Study participants Potential participants were identified using a local registry at one of the largest centres for people with CLRD in Sweden; the ¨ rebro University Limb Deficiency and Arm Prosthesis Centre at O Hospital. A total of 211 adults born 1990 (20 years of age) with CLRD were identified. Matching data with the Swedish System for Population Registration [24] revealed that two individuals had died, seven had emigrated and one person was not identifiable due to incomplete information (Figure 1). Procedure The questionnaire was sent to 201 persons (100 women; 101 men) together with information about the study, a consent form and a stamped envelope, in May 2011. A reminder was sent after 2 weeks (Figure 1). The study followed the guidelines of the declaration of Helsinki and was approved by the Regional Ethics ¨ rebro (D-nr 2011/116). committee in Uppsala-O Statistical procedure Data were summarised to provide frequencies and percentages. Chi-squared tests were used to analyze potential age and gender differences. Probability values of 50.05 were considered statistically significant. The data were processed using the Statistical Package for the Social Sciences (SPSS ; IBM, Armonk, NY) version 17.0.
Results The response rate was 58% (women 66%; men 50%) as 117 of the 201 available persons answered the questionnaire. No significant Patients presently at the centre = 83 Earlier patients at the centre = 128 n = 211 External exclusions n = 10 (2 deceased; 7 emigrated; 1 not possible to identify) Questionnaires sent out by mail n = 201
Questionnaire The study-specific questionnaire was constructed in several steps to identify content areas and relevant questions. Initially, the definition of the concept of life-situation was identified through the literature. Secondly, experiences from members of the specialised, multidisciplinary team were collected. Finally, inspiration and examples of questions were collected from two reports
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Did not answer the questionnaire n = 84 Answered the questionnaire n = 117
Figure 1. Flow chart. The questionnaire was answered by 58% of the included patients.
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differences for age or gender were found between the group who answered and those who did not (p ¼ 0.060). Table 1 presents the demographic characteristics of the participants. A majority (71%) of the participants, were living with a spouse, about half of them (52%) had children who lived at home. Among the participants 44% were living in a house of their own and 56% in a flat. Drivers’ licences were held by 80%, with no significant differences concerning age or gender found. All the participants stated that they used different modes of transportation such as walking, cycling and driving. About 45% commonly used public transportation, such as buses, trains, the underground or trams. Percentages for extent, form and level of limb deficiency, other disabilities, surgery and use of assistive devices are displayed in Table 2. The most common extent of deficiency was unilateral, transverse deficiency below the elbow. Twenty-seven per cent Table 1. Patient demographic characteristics. Respondents (n ¼ 117)
Non-respondents (n ¼ 84)
Age groups 20–29 years 52 30–39 years 41 40–49 years 18 450 years 6 Mean age Mean SD 32.99 10.2 Living situation (n ¼ 116) With partner and children 54 With partner 29 Single 26 Single with children 7 Home (n ¼ 116) Flat 65 House 51 Driving licence (n ¼ 116) Yes 93 No 23 Usual mode of transport (n ¼ 117) a 86 Walking Driving a car 79 Riding a bicycle 63 b 55 Use of public transport Getting a lift 17 6 Use of transport servicec
40 29 14 1 30.79 8.3
a
One person uses rollerblades, one person uses electrical wheelchair. Bus, underground, tram, train or flight. c Transport service or taxi. b
Table 2. Extent, form and level of CLRD, other disorders, surgical operations and use of assistive devices. Use of Limb Other Surgical assistive deficiency disorders operations devices (n ¼ 117) (n ¼ 117) (n ¼ 116) (n ¼ 117) Extent Upper limb (unilateral) Lower limb (unilateral) Multiple deficiencies Form Longitudinal Transversal Levela Hand Forearm Upper-arm a
Transversal CLRD.
108 5 4
50 3 3
24 4 3
73 5 1
16 101
8 48
11 20
9 70
13 5 2
12 56 2
33 63 5
of the participants had gone to surgery, related to the limb deficiency. Those who had a lower limb deficiency had more surgical treatment compared to those with upper limb and multiple deficiencies (p ¼ 0.001). About 11 out of 16 with a longitudinal type of deficiency had gone through surgery. Very few with a transverse upper limb deficiency reported any surgery at all. Usage of some kind of assistive devices, e.g. prostheses, splints or mobility devices were reported by 68%. More women than men used assistive devices in everyday life, though no significant difference was found (p ¼ 0.570). Participants with a deficiency of the upper limb frequently used functional prostheses like myoelectric or body-powered prostheses. Body-powered mechanical arm prostheses were used exclusively by men within the study sample. Cosmetic prostheses were used to a higher degree by women (p ¼ 0.008). The educational level of the participants in relation to CLRD, age and gender is shown in Table 3. All participants had completed elementary school. Upper secondary school had been completed by 95% and 50% had studied at college or university level. A majority of those with a university degree had studied 3 years or more. There was a significant difference between men and women (p ¼ 0.015) in relation to educational level where 60% of the women had studied at college or university level compared to 36% of the men. The opposite percentages were true for upper secondary level. For 5% of the participants, elementary school was their highest level of education. For this study, the participants’ current life situation is reported in terms of their educational level, main daily occupation, work situation, leisure activities, self-reported general health and thoughts about the future. At the time of the investigation 11% were studying full time, at university level or advanced educational training and the studies were meant to lead to a professional degree for most of them. Among the participants, 7% were unemployed, 3% were on sick leave (all women) and 2% were retired. Of the unemployed, the majority were women between 20 and 39 years of age. Main daily occupation is shown in relation to CLRD, age and gender in Table 3. Paid employment was the main occupation for 77% of the participants, shown in Table 3. Of the employed, 82% had permanent employment, 11% had temporary employment and 8% owned their own business (six men and one woman). Of those who were temporarily employed, eight were women and two were men (p ¼ 0.039). In relation to employment, 60% of the participants (64% of them men) were employed in private companies and 35% (88% of them women) were employed in the public sector. Most of those who worked, worked full-time (80%). The main occupational groups are displayed in Table 4. Work that demands a higher level of physical effort was more common among younger participants with deficiency of the upper limb. No significant differences were detected with regard to physical effort, age or gender. None of the respondents rated their ability to work as being poor in relation to the physical, psychological and mental demands of their work. Only 5% indicated that they were dissatisfied with their jobs. Their jobs represented different levels of physical effort, thus work satisfaction had no correlation with the physical effort of the work (Table 3). Concerning general work capacity, 26% of the employed participants rated their capacity to work as reduced (Table 3). A few, 3% (women, 30–39 years), stated that their capacity to work was greatly reduced. Leisure activities were reported and are shown in Table 5. The participants participated regularly in social activities in the community. Most common was going to the cinema and spending time with relatives and friends. Using the computer, reading and watching TV were also common leisure activities (90%). A large
b
Statistics Sweden (2008) [10]. CDUST (2008) [23]. c Statistics Sweden (2011) [25].
a
Number of patients Education – level (n ¼ 117) Elementary school Upper secondary school College/University Main daily occupation (n ¼ 116) Employed Student Unemployed On sick-leave Retired Employment (n ¼ 93) Permanent employment Temporary employment Self-employment Employer (n ¼ 93) Private company Public sector Other Work – level of effort (n ¼ 93) Sedentary work Light work (requiring some mobility) Moderately heavy work Heavy work Self assessed general work capacity (n ¼ 93) Not reduced Partially reduced Greatly reduced Self-assessed general health (n ¼ 116) Very good Good Bad Thoughts about the future (n ¼ 115) Optimistic Not optimistic
CLRD
5 0 3 2 4 1 0 0 0 4 0 0 3 1 0 2 1 1 0 2 1 1 0 5 0 5 0
6 47 55 82 11 8 4 2 70 9 7 50 32 4 39 18 23 6 65 19 2 45 60 2 93 13
Lower-limb (unilateral)
108
Upper-limb (unilateral)
3 1
2 1 1
2 1 0
1 1 1 0
3 0 0
2 1 0
3 1 0 0 0
0 2 2
4
Multiple
42 8
23 27 1
27 9 0
11 6 15 4
23 12 1
28 6 2
34 12 4 1 0
2 33 17
52
20–29
40 1
18 22 1
32 4 3
22 10 6 1
22 14 3
30 4 5
37 0 3 1 0
1 10 30
41
30–39
Age
15 3
6 11 1
7 8 0
8 2 4 1
10 5 0
15 0 0
15 1 0 2 0
0 7 11
18
40–49
4 2
0 6 0
3 0 0
1 2 0 0
1 2 0
3 0 0
3 0 1 0 2
3 2 1
6
450
58 8
27 37 2
41 7 3
23 13 12 3
20 29 2
42 8 1
47 8 7 4 1
4 22 41
67
Female
43 6
20 29 1
28 14 0
19 7 13 3
36 4 2
34 2 6
42 5 1 0 1
2 30 18
50
Male
Gender
Total
101 14
47 66 3
69 21 3
42 20 25 6
56 33 4
76 10 7
89 13 8 4 2
6 52 59
117
88% 12%
41% 57% 3%
74% 23% 3%
45% 22% 27% 6%
60% 35% 4%
82% 11% 8%
77% 11% 7% 3% 2%
5% 44% 50%
All participants
Table 3. Educational level, main daily occupation, work situation, general health and thoughts about the future – shown in the categories; CLRD, age and gender.
7%a
7%c
Vg þ G 75%b
69%a 30%a 1%a
40%a 32%a 26%a
65%a 34%a 1%a
66%a
75%a
78%a 13%a 9%a
23%a 51% a 24%a
With disability
19%a 45%a 38%a
Total
Population
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Table 4. Occupational groups. Occupational group (n ¼ 93)
Gender
Age
Limb reduction
Total
Populationa
Management work
Women Men
0 4
20–29 30–39 40–49 450
0 4 0 0
Upper Lower Multiple
3 1 0
4
4.3%
5%
Work requiring theoretical specialist skills
Women Men
22 8
20–29 30–39 40–49 450
8 17 4 1
Upper Lower Multiple
28 1 1
30
32.2%
19.7%
Work requiring a shorter university education
Women Men
8 6
20–29 30–39 40–49 450
2 7 5 0
Upper Lower Multiple
14 0 0
14
15.0%
20.3%
Office administration and customer service
Women Men
5 2
20–29 30–39 40–49 450
2 3 1 1
Upper Lower Multiple
7 0 0
7
7.5%
8.6%
Service, healthcare and social work, sales
Women Men
10 3
20–29 30–39 40–49 450
6 5 1 1
Upper Lower Multiple
12 1 0
13
13.9%
18.9%
Work in the fields of agriculture, horticulture, forestry and fishing
Women Men
–
20–29 30–39 40–49 450
–
Upper Lower Multiple
–
0
0%
1.8%
Professions within construction and manufacturing
Women Men
0 5
20–29 30–39 40–49 450
3 0 2 0
Upper Lower Multiple
5 0 0
5
5.3%
10.9%
Processing and machinery operation, transportation
Women Men
0 9
20–29 30–39 40–49 450
7 1 1 0
Upper Lower Multiple
8 1 0
9
9.7%
10.0%
Elementary occupations
Women Men
6 5
20–29 30–39 40–49 450
8 2 1 0
Upper Lower Multiple
9 0 2
11
11.8%
4.4%
Armed forces
Women Men
–
20–29 30–39 40–49 450
–
Upper Lower Multiple
–
0
0%
0.3%
a
Swedish statistics (2008) [10].
Table 5. Leisure activities.
Participation in study circle or course (n ¼ 116) Meeting relatives and friends (n ¼ 117) Doing creative activitiesa (n ¼ 116) Participating in any social eventsb (n ¼ 115–116) Recreation Gardening (n ¼ 116) Care of house pet (n ¼ 116) Visiting the countryside (n ¼ 116) Media Using a computer (n ¼ 116) Watching TV (n ¼ 116) Reading books or newspapers (n ¼ 116) Physical activities Physical exercise for at least 30 min (n ¼ 117) a
Every week
Sometimes
Rare/never
5 98 25 0–6
16 19 40 16–95
95 0 51 21–84
36 40 30
38 11 64
42 65 22
99 111 101
16 4 12
1 1 3
84
22
11
Playing an instrument, singing or engaging in another creative activity. Sports events, the theatre, exhibitions, concerts, the library or the cinema.
b
DOI: 10.3109/09638288.2013.854839
number of participants, 72%, exercised at least 30 min once a week. No significant differences were found in relation to age or gender. About 50% participated in various group activities in their spare time. Estimated time per week for unpaid domestic work was described and 35% spent 0–10 h/week, 33% spent 411–21 h/week and 37% over 21 h/week on domestic work. Women spent significantly more time on unpaid work than men (p ¼ 0.009). There was also a significant difference in reference to age where the younger respondents spent less time on unpaid work than the older ones (p ¼ 0.001). The participants’ self-assessed general health and thoughts about the future is shown in relation to CLRD, age and gender in Table 3. Most of the participants considered their health to be good or very good and only 2% considered it to be bad. Many, 87%, were optimistic about their future. No significant differences were found in relation to age or gender. Concerning perceived job security and current ability to work, 8% of the respondents worried about losing their jobs within the next year. On the other hand, 88% declared that based on their health today they would be able to work at their current job 2 years from now.
Discussion This is the first study that presents the life situation of people with CLRD in Sweden providing information regarding daily occupation, leisure activities, use of assistive devices and self-reported general health. The results add new knowledge about parts of the life situation of these people. Overall, the results are positive, especially concerning educational level, employment and leisure activities among the participants. Unilateral transversal upper limb deficiency was, as expected, the dominant reduction deficiency among the participants and the frequency of other disorders, apart from CLRD, corresponds well with the Swedish population as a whole [10]. The participants’ family life and living condition seemed not to differ in comparison to the population [22] and few appeared to avoid demanding activities, such as home repair work and gardening. The number of participants that had completed a postsecondary education is far above the average of the population [10] and women had a higher level of education than men. The time spent in healthcare services during childhood and youth did not show any negative impact on the educational options for participants in this study, contrary to what Weir et al. [11] had feared concerning this group. The majority of the participants were employed or self employed, a higher proportion compared to the Swedish population with some form of disability [10]. The number of unemployed participants is well correlated to the total population in Sweden at the time of the investigation [25]. Professions represented among the participants differed in three ways from the population: (i) a higher percentage of participants with professions requiring theoretical specialist skills, (ii) a higher percentage with elementary professions that require no specific education and (iii) a lower percentage with professions within construction and manufacturing. Employment in the private sector was most common, men to a significantly greater extent than women. About 25% of the employed participants rated their general work capacity as partially or greatly reduced. However, in their current profession and in relation to its demands, no employed participant assessed their work ability as reduced. These different views may be related to two dimensions of personal causation [26]; sense of personal capacity and sense of self-efficacy. Also relevant are elements such as, satisfaction, roles and perceptions of expectations. Young participants with jobs demanding a high level of physical effort reported uncertainty about their ability
Life situation of adults with limb reduction
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to continue in their current job in 2 years time. One reason could be the strain on the body and a considerable risk of an uneven load on the fully developed limbs. As a result, jobs with a higher level of physical effort could be considered a short term solution for people with CLRD. There were no significant differences between participants who were employed, unemployed or on sick-leave, concerning any of the measured variables in the study except whether or not they hold a driving license. The reason for not holding a driving licence was reported to be due to the required and expensive adaptations of the car. Conventional body-powered upper-limb prostheses were used exclusively by men in this study, and cosmetic hand prostheses, had a higher usage among women. These findings are supported by previous research [10,27]. There is also a relationship between the use of different assistive devices and the kind of work to be performed [27]. The participants in this study reported that they, to a great extent, had the assistive devices they needed for the demands of their current job. Concerning leisure time the participants showed the same pattern as adults in general [23], and there were no significant differences between age and gender. These results differ from those of an earlier study [12] that showed that people with congenital physical deficiency are passive participants in leisure activities. Concerning unpaid domestic work, there were differences within gender and age, where women and older people spend more time on these activities than men and younger people. Compared to the general population [23], the differences are consistent. The general health among the participants in this study was better than that reported for the Swedish population [23]. The representativeness of the sample was considered when inviting all potential participants from one of Sweden’s largest units for persons with congenital limb dysfunction. A multicentre approach could have invited all persons with congenital limb dysfunction living in Sweden. The response rate was fair (58%) and the analyses of demographic data revealed no significant differences between responders and non-responders. The sample seems to be representative but there is no control for whether those who are more content with their life-situation were overrepresented in the final sample. Also, the results cannot be generalized to other parts of the world without considering the general welfare and health care system of that specific country. In concordance with previously registered data [2,3], only a few people reported limb reduction in the lower extremities. Several steps were taken to ensure questionnaire quality. Initially, a literature search was performed to reflect and describe the concept ‘‘life-situation’’. Both internal and external perspectives were identified and an external perspective was chosen for the present study. Thereafter, other published sources of information were used when formulating the questions and the response options. Steps were then taken to ensure that the questions were easily understood and that the response options were adequate. Collecting viewpoints from both specialised professionals and persons with CLRD further enhanced face validity. The choice to send the questionnaires by post was based on the fact that there was no available information of e-mail addresses. Filling in and sending questionnaire by e-mail is often considered less time-consuming than using regular post. Using regular post may have negatively influenced the response rate. Pre-addressed and stamped envelopes were supplied to facilitate response. Whether the reported life-situation is dependent on the limb reduction is not possible to conclude using a cross-sectional design [28]. Longitudinal studies would be more appropriate for drawing such conclusions. For a richer and more complete picture of the life-situation of people with congenital dysfunction, an internal perspective should be addressed using a qualitative
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approach. Occurrences of strain injuries among adults with CLRD is unknown, as is whether those injuries can be related to use of assistive devices, or influenced by other factors. Prostheses are continuously developed for sophisticated functions and aesthetics and further research is needed to investigate the benefits and the cost effectiveness of these devices from the point of view of people with CLRD and their life situation.
Conclusions This study described the current life situation of 117 adults with CLRD in relation to their main daily occupations with a perspective from Swedish society. The results showed that the participants, to a great extent, were educated and employed. Onefourth of them reported a reduced work capacity in general but a high level of work ability in relation to their current work tasks. The percentages of participants outside the labour market correspond well to the Swedish population as whole. The results also showed that the participants were highly involved in social and physical activities during their leisure time. Two out of three use some kind of assistive device in their daily life and the need was met to a high degree. For a person with a congenital dysfunction experiences continuously establish and influence their desires during life. The information in this study is crucial and can be used in planning health services and rehabilitation programmes for people with CLRD of different ages, as well as providing some answers to questions from parents of new born children with CLRD.
Acknowledgements The authors would like to thank everyone who took part in the ¨ rebro study and the staff of The Limb Deficiency Centre at O University Hospital.
Declaration of interest The authors report no declarations of interest. The work was funded in part by Norrbacka Eugenia-foundation, Stockholm, and ¨ rebro University Hospital. the Centre for Health Care Sciences, O
References 1. National Board of Health and Welfare (In Swedish: Socialstyrelsen). [Internet] Birth defects 2010. (In Swedish: Fosterskador och kromosomavvikelser 2010) [cited 2011 may 5]. Available from: http://www.sos.se [last accessed 7 Nov 2013]. 2. Ka¨lle´n B, Rahmani TMZ, Winberg J. Infants with congenital reduction registered in the Swedish register of congenital malformations. Teratology 1984;29:73–85. 3. Ephraim P, Dillingham T, Sector M, et al. Epidemiology of limb loss and congenital limb deficiency: a review of the literature. Arch Phys Med Rehabil 2003;84:747–61. 4. Kasperski SB, Wilson RD. Prenatal evaluation of fetus with limb deficiency/hypoplasia – a case report review of common congenital limb anomalies. J Pediatr Rehabil Med 2009;2:189–93. 5. International Organization for Standardization. Prosthetics and orthotics – limb deficiencies – Part 1: methods of describing limb deficiencies present at birth. Gene´ve: ISO 8548-1; 1989. 6. Wiedrich TA. Congenital constriction band syndrome. Hand Clin 1998;14:29–38. 7. Sarvima¨ki A, Stenbock-Hult B. Caring: an introduction to health care from a humanistic perspective. Helsinki: Foundation of Nursing; 1993. 8. Bolse K, Flemme I, Ivarsson A, et al. Life situation related to the ICD implantation; self-reported uncertainty and satisfaction in Swedish and US samples. Eur J Cardiovasc Nurs 2002;1:243–51.
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9. Kielhofner, G. Doing and becoming: occupational change and development. In: Kielhofner G, ed. Model of human occupation. 4th ed. Baltimore: Lippincott Williams & Wilkins; 2008:126–40. 10. Statistics Sweden [Internet]. Labour market situation for disabled persons – 4th quarter 2008. (In Swedish: Funktionshindrades ¨ rebro: SCB. situation pa˚ arbetsmarknaden- 4:e kvartalet 2008) O [cited 2011 March 4]. Available from: http://www.scb.se [last accessed 7 Nov 2013]. 11. Weir S, Ephraim P, MacKenzie E. Effects of paediatric limb loss on healthcare utilisation, schooling and parental labour supply. Disabil Rehabil 2010;32:2046–55. 12. Specht J, King G, Brown E, Foris C. The importance of leisure in lives of persons with congenital physical disabilities. Am J Occup Ther 2002;56:436–44. 13. Michielsen A, Van Wijk I, Ketelaar M. Participation and quality of life in children and adolescents with congenital limb deficiencies: a narrative review. Prosthet Orthot Int 2010;34:351–61. 14. Murray C. Being like everybody else: the personal meaning of being a prosthesis user. Disabil Rehabil 2009;31:573–81. 15. Krantz O, Bolin K, Persson D. Stigma-handling strategies in everyday life among women aged 20 to 30 with transverse upper limb reduction deficiency. Scand J Disabil Res 2009;10: 209–26. 16. Michielsen A, Van Wijk I, Ketelaar M. Participation and healthrelated quality of life of Dutch children and adolescents with congenital lower limb deficiencies. J Rehabil Med 2011;43: 584–661. 17. Hermansson L, Eliasson AC, Engstro¨m I. Psychosocial adjustment in Swedish children with upper-limb reduction deficiency and a myoelectric prosthetic hand. Acta Paediatr 2005;94:479–88. 18. Ylima¨inen K, Nachemson A, Sommerstein K, et al. Health-related quality of life in Swedish children and adolescents with limb reduction deficiency. Acta Paediatr 2010;99:1550–5. 19. Christiansen C, Clark F, Kielhofner G, Rogers J. Position of paper: occupation. Am J Occup Ther 1995;49:1025–18. 20. Reed K, Sanderson SN. Concepts of occupational therapy. 4th ed. Baltimore: Lippincott Williams & Wilkins; 1999:132–8. 21. World Health Organization. International classification of functioning, disability and health. Geneva: World Health Organization; 2001. 22. Statistics Sweden [Internet]. Background Facts, Population and Welfare Statistics 2010:4. Changes in the Life Conditions Survey 2006–2008. A study in the Comparability of Welfare Indicators over Time. (In Swedish: Fo¨ra¨ndringar i underso¨kningar av levnadsfo¨rha˚llanden 2006–2008. En studie av ja¨mfo¨rbarheten o¨ver tid fo¨r ¨ rebro: SCB. [cited 2011 March 4]. va¨lfa¨rdsindikatorerna) O Available from: http://www.scb.se [last accessed 7 Nov 2013]. 23. CDUST – County Council in Uppsala (C) So¨rmland (D) ¨ rebro (T). (In Swedish: Va¨stmanland (U) Va¨rmland (S) and O CDUST- Landstingen i Uppsala (C), So¨rmlands (D), Va¨stmanlands ¨ rebro (T) la¨n. Life and Health 2008: (U), Va¨rmlands (S) och O Results from investigation about living conditions, habits of life, health and health care service. Report nr 1, 2008. (In Swedish: Liv och ha¨lsa 2008: Resultat av en underso¨kning om livsvillkor, levnadsvanor, ha¨lsa och va˚rdkontakter. Rapport nr 1, 2008) ¨ desho¨g: Danaga˚rds grafiska; 2008. O 24. The National Tax Board. [Internet] Swedish System for Population Registration (In Swedish: Folkbokfo¨ringssystemet) [cited 1 April 2011]. Availible from: http://www.skatteverket.se [last accessed 7 Nov 2013]. 25. Statistics Sweden [Internet]. (In Swedish: Statistiska centralbyra˚n) [cited 2011 Aug 4]. Available from: http://www.scb.se [last accessed 7 Nov 2013]. 26. Kielhofner G. Volition. In: Kielhofner G, ed. Model of human occupation. 4th ed. Baltimore: Lippincott Williams & Wilkins; 2008:32–50. 27. Kyberd P, Hill W. Survey of upper limb prosthesis users in Sweden, the United Kingdom and Canada. Prosthet Orthot Int 2011;35: 234–41. 28. Altman D. Practical statistics for medical research. London: Chapman & Hall; 1991.
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Appendix Questionnaire Life situation of adults with congenital limb reduction deficiency in Sweden
œ œ œ œ œ œ œ What?
1569
Fulltime house holding Student Unemployed, without allowance Unemployed, with allowance On sick-leave Retired Other . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . ..
Demographic features Mark the correct alternative with a cross (1) I am a œ Woman œ Man (2) I was born in. . .. . .. . .. . .(year) (3) With whom do you share your residence? (More than one alternative may be marked) œ None œ Parents/siblings œ Husband/Wife/Partner œ Children, 0–6 years number. . .. . ... œ Children, 7–12 years number. . .. . ... œ Children, 13–17 years number. . .. . ... œ Children, 18 years and older number. . .. . ... œ Other adult (4) 4. What type of housing do you live in? œ Flat œ Terraced house œ (Private) house œ Block of service flats œ Room/lodgings œ Other (5) Do you hold a drivers’ licence? œ No œ Yes (6) Do you, or someone in your household, have access to a car? œ No œ Yes (7) How do you usually travel to different places? (More alternatives can be marked) œ Walk œ Cycle œ Drive a car œ Get a lift œ Mobility service œ Taxi œ Bus œ The underground œ Tram œ Train œ Other What?. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. (8) What is your highest level of education? œ Elementary school/9-year compulsory school œ Junior secondary school/girl’s school œ 2-year upper secondary school or vocational school œ 3-to-4-year upper secondary school œ University or college, 2.5 year or less œ University or college, 3 years or more œ Other education What? . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. (9) Did your education result in a profession? œ No œ Yes What profession?. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . ..
Main mainly occupation (10) What is your current main daily occupation? œ Employed œ Owner of a company œ On parental leave œ On leave (of absence)
If you are a student, please answer the following three questions. If you are not a student, please continue to page number 5. (11) At what educational level are you currently studying? œ Upper secondary school œ Vocational training course œ Advanced vocational education œ College/university – 53 year œ College/university – 3 year or more œ Other What?.................................................................................................. (12) What is the extent of your studies at present? œ Fulltime œ Part time Rate of study:. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . . œ Other What? . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. (13) Will your studies result in a particular profession? œ No œ Yes What profession? . . .. . .. . .. . .. . .. . .. . .. . .. . .. œ Don’t know If you are employed, on parental-, absence- or on sick leave please answer the following 12 questions. If not, please continue to page 8. (14) What is your current profession? . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. (15) What is your main form of employment œ Permanently employment œ Temporarily employment œ Self-employment (16) Who is your main employer? œ Private company œ Myself or someone in my family œ The local government œ The county council œ The State œ Other (17) How many hours a week does you normally work . . .. . .. . .. . .. . .. . .. . .. . .. . .hours a week (18) Would you like to work more or less during a week? œ I want to work less during a week œ I want to work more during a week œ Neither more nor less (19) How would you assess your current ability to work compared to the physical demands of your job. œ Very good œ Fairly good œ Reasonably œ Fairly bad œ Very bad (20) How would you assess your current ability to work compared to the psychological demands of your job. œ Very good œ Fairly good œ Reasonably œ Fairly bad œ Very bad (21) How physically demanding is your job? œ Sedentary work (You sit still most of the time) œ Light, with some mobility (You are mobile but do not carry heavy things)
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œ Moderately heavy work (You walk a lot and carry heavy things) œ Heavy work (Your work is physically demanding and there is significant strain on your body) Comments: . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . . . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . ... . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . ... (22) How satisfied are you with your current job? œ Very satisfied œ Fairly satisfied œ Neither satisfied or dissatisfied œ Fairly dissatisfied œ Very dissatisfied (23) Regarding your health – do you think you will be able to stay at your current job for the next 2 years? œ No, hardly œ Maybe œ Yes, probably (24) Are you concerned about losing your job within the year? œ Very concerned œ Fairly concerned œ Not hardly concerned œ Not concerned at all (25) Would you assess your work capacity as reduced? œ Yes, a lot œ Yes, partially œ No œ I don’t know
œ 11–20 h/week œ 21–30 h/week œ 31 h/week or more (29) Are you an active member of a group, organization, association or religious community? (More than one alternative may be marked) œ No œ Yes, active in a trade union œ Yes, active in a political party œ Yes, active in a nature/environmental organization œ Yes, active in a sports association œ Yes, active in a relief organization œ Yes, active in an association for disabled persons œ Yes, active in an association for retired persons œ Yes, active in a religious community œ Yes, active in a choir, orchestra, theatre group or some other company engaged in cultural activities œ Yes, active in a housing co-operative/property owner’s association œ Yes, active in a Board of Education œ Yes, active in a another association or organization
LIMB DEFICIENCY, ASSISTIVE DEVICES AND GENERAL HEALTH (30) Describe your limb deficiency – please use a coloured pen to mark the parts of the hand, arm, foot or leg that you are missing.
Leisure activities and interestsa (26) How often do you do the following activities in your spare time? (Mark with a cross on each line)
Every Every Every Every More Day week month year seldom Never Go to a sports event without participating Go to the theatre Go to an exhibition/museum Go to a concert Go to the library Go to the cinema Participate in a study circle or course Go to a bingo hall Garden Take care of domestic animals Take a walk in the country side, go fishing, hunting and boating Sing, play an instrument, dance, paint, sew or do other creative activities Use a computer Watch TV See friends and relatives Read newspapers/books
(27) Do you exercise continuously at least 30 min? œ Practically never œ Sometimes/irregularly œ Approximately once a week œ At least twice a week (28) How many hours a week (on an average) do you spend on housework (unpaid work), for example child care, care of family members, shopping, cooking, overseeing household expenses, washing or cleaning. œ 0–2 h/week œ 3–10 h/week
Comments: ........................................................................................... ................................................................................................................ ................................................................................................................ (31) Have you had any surgery of your reduced limb? œ No œ Yes Please describe . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . . . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . . . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . . (32) Do you make use of any of the following assistive devices? (More than one alternative may be marked) œ Hand prosthesis œ Arm prosthesis œ Lower limb prosthesis œ Foot prosthesis
DOI: 10.3109/09638288.2013.854839
œ œ œ œ œ œ œ
Lower limb orthotic Adapted shoes Crutches, walking sticks Walker (with or without wheels) Wheel chair Other What?. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . . I do not use assistive devises
Use of upper limb prosthesis (33) What kind of upper limb prosthesis do you use? (More than one alternative may be marked) œ Myoelectric prosthesis œ Electric prosthesis œ Body-powered prosthesis œ Hook œ Wrist powered prosthesis œ Cosmetic hand prosthesis œ Partial hand prosthesis œ Other kind of upper limb prosthesis What?. . .. . .. . .. . .. . .. . .. . .. . .. . . œ I don’t know (34) Do you have the use of the assistive devices that you need. . . . . .for managing your work tasks? œ Yes œ No . . .for practising and participating in leisure activities œ Yes œ No If no, please comment: . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . . . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . . (35) Apart from your limb deficiency, do you suffer for some other disease, disorder or impairment? œ Asthma/allergy œ Neuropsychiatric disease
Life situation of adults with limb reduction
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œ Diabetes œ Dyslexia œ Deafness œ Epilepsy œ Heart/vascular disease œ Hearing-impairment œ Abdomen-/intestinal disease œ Pulmonary disease œ Psoriasis œ Mental illness œ Mental retardation œ Physical impairment œ Speech disorder œ Visual handicap œ Other What?........................................... œ No, nothing (36) How do you assess your general health? œ Very good œ Good œ Fairly good œ Bad œ Very bad (37) What do you think about your personal future? œ I am very optimistic œ I am fairly optimistic œ I am neither optimistic nor pessimistic œ I am fairly pessimistic œ I am very pessimistic Please answer the questionnaire and return it using the stamped envelope, before Friday the 10th of June 2011.
THANK YOU FOR YOUR PARTICIPATION!
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EDUCATION AND TRAINING
Life situation of adults with congenital limb reduction deficiency in Sweden Lis Sjo¨berg1,2, Ylva Nilsaga˚rd2,3, and Carin Fredriksson2 1
¨ rebro University Hospital, O ¨ rebro, Sweden, 2School of Health and Medical Department of Paediatrics, Limb Deficiency and Arm Prosthesis Centre, O ¨ rebro University, O ¨ rebro, Sweden, and 3Centre for Health Care Sciences, O ¨ rebro County Council, O ¨ rebro, Sweden Sciences, O
Abstract
Keywords
Purpose: To describe the current life situation of adults with congenital limb reduction deficiencies (CLRD), living in Sweden, regarding their main daily occupation, leisure activities and self-reported general health. Methods: A cross-sectional survey was conducted using a study-specific questionnaire, sent by post. Hundred and seventeen persons with different extent, forms and levels of CLRD (mean age 33 years) responded to the questionnaire. Results: Work or study was the main occupation for 86% of the participants and 50% had completed a college or university education. About 7% were unemployed and 3% were on sick leave. The participants were highly involved in social and physical activities during leisure time. The majority reported good or very good general health. Conclusion: This study is the first investigation of the life situation of adults with CLRD described with a perspective from Swedish society. The participants were educated and worked to a great extent, which corresponds well to the Swedish population as a whole. Further research is needed, especially with a focus on the internal perspective of life situation, different aspects of work capacity, occurences of strain injuries and the benefit of assistive devices among adults with CLRD.
Adults, congenital limb reduction deficiency, daily occupation, life situation History Received 7 February 2013 Revised 26 September 2013 Accepted 9 October 2013 Published online 18 November 2013
ä Implications for Rehabilitation
People with CLRD require a health care system with a multi-professional rehabilitation team offering regular contact during their life time. Educational system offering study counselling on all education levels (from primary school to university) is an important type of support for people with any kind of deficiency, in order to find suitable education and profession. Work is of importance for an acceptable life situation. Rehabilitation for people with CLRD should emphasise facilitating their ability to work, through engagement in individual personal capacity and self-efficacy. The majority of people with CLRD are users of prostheses and assistive devices. The benefits of the devices are basic but the rehabilitation should also include aspects of usability and use worthiness for individuals in performing their daily activities.
Introduction Congenital limb reduction deficiency (CLRD) is one of the 10 most common and visible birth defects in Sweden [1]. In 2010, the incidence was 6/10 000 births, a prevalence of 50 children a year [1,2]. Surveillance of CLRD exists in large parts of the developed world and incidence is commonly reported at 2–7/ 10 000 births [3,4]. There are no trends over time and the potentially disabling conditions affect the life situation, the health and the well-being of persons worldwide [3].
Address for correspondence: Lis Sjo¨berg, School of Health and Medicine ¨ rebro University, SE 701 82 O ¨ rebro, Sweden. Tel: +46 19 30 Sciences, O 35 85. E-mail: [email protected]
People with CLRD form an etiologically heterogeneous group, and the anomalies range from mild unilateral to severe multiple limb reductions defects [2,4,5]. Upper-limb reduction is twice as common as lower limb reduction [3,4]. The causes are in most cases unknown [2], but can be due to vascular disruptions, genetic variations, teratogenic exposure [3,4] or in association with constriction band syndrome [6]. The thalidomide tragedy, 50 years ago, caused severe, usually bilateral limb reduction deficiencies in many children [4]. Swedish children, born with CLRD, usually join a rehabilitation centre in their county. The majority also join one of the four Limb Deficiency Centres with constituted, specialised clinical multidisciplinary teams. Examinations of limitations are important to confirm choices of interventions in order to minimize negative consequences of the CLRD. To gain knowledge of how people with CLRD develop and live their lives there is a need to investigate their current life situation.
Life situation of adults with limb reduction
DOI: 10.3109/09638288.2013.854839
Life situation A life situation consists of a biological and psychological organism in interaction with the social environment divided into five dimensions [7,8]. The present study focuses on three of them; the biophysical, the socio-cultural and the intellectual. One of the most obvious manifestations of a person’s development over a life span is engagement in different occupations in different social environments [9]. Fifteen per cent of the Swedish population, aged 16–64 years, have some kind of disability [10]. Of these, 450% have a reduced work capacity and the level of education within this group is lower than among the population as a whole [10]. Children with CLRD normally begin school based solely on their age but their need to take time for health service utilization may negatively affect their progress in school [11]. To our knowledge, there are no studies published about adults with CLRD, their level of education and situation on the labour market. Involvement in leisure activities that provide some kind of doing, belonging and self-understanding enables people to find meaning in life [12]. Adolescents with congenital physical disabilities tend to participate in passive leisure activities [12], but whether this can be transferred to adults with CLRD has yet to be explored. The psychosocial functioning of children and adolescents with CLRD appears to be comparable to healthy peers [13] and the use of prosthesis can greatly increase psychological health and wellbeing [14]. Young women, with CLRD, show strategies to cope with people’s attitudes in situations of everyday life [15] and adolescents with lower limb deficiencies are characterized by less participation in social and skill-based activities [16]. Swedish adolescents (8–18 years), with CLRD, report a good healthrelated quality of life, but some social stigma needs to be further investigated [17,18]. Children with CLRD will grow up with this chronic defect and their parents are very often concerned about their child’s future, i.e. their ability to perform daily activities, educational choices and professional possibilities. Health care professionals have limited possibilities to answer these questions due to the gap in knowledge about how adults with CLRD live their lives. The purpose of this study is therefore to describe the current life situation of adults with CLRD in Sweden, in terms of educational level, main daily occupation, work situation, leisure activities, use of assistive devices, general health and thoughts about the future, in relation to gender and age. In this study, ‘‘occupation’’ is defined as ordinary and familiar things that people do every day [19,20]. ‘‘Work’’ is defined as engaging in all aspects of work for payment, including self-employment, part-time and full-time employment [21], and finally ‘‘leisure activities’’ refer to informal or organised unpaid engagement and occupation [21].
Methods Design A cross-sectional survey was conducted with the use of a studyspecific questionnaire. Data were collected during May and June 2011.
from Statistics Sweden, a collection of statistical information from the Central Bureau of Statistics in Sweden [10,22], and from an investigation of living conditions and health [23], in five Swedish county councils. The questionnaire was scrutinized for comprehensiveness by health care professionals (n ¼ 4) with expertise in relation to the target group. The structure and answerability were then tested by persons outside the health care and medical service, three men and three women, 20–67 years of age, representing different social groups without CLRD. The questions regarding type of CLRD and use of technical devices were tested on two persons with CLRD who did not participate in the survey. Adjustments were made according to the comments and suggestions that followed. The final version included 37 questions, many of them with multiple sub questions (Appendix). The questions included demographic features, information about the CLRD, level of education, main daily occupation, work situation, leisure activities, health condition and thoughts about the future. Study participants Potential participants were identified using a local registry at one of the largest centres for people with CLRD in Sweden; the ¨ rebro University Limb Deficiency and Arm Prosthesis Centre at O Hospital. A total of 211 adults born 1990 (20 years of age) with CLRD were identified. Matching data with the Swedish System for Population Registration [24] revealed that two individuals had died, seven had emigrated and one person was not identifiable due to incomplete information (Figure 1). Procedure The questionnaire was sent to 201 persons (100 women; 101 men) together with information about the study, a consent form and a stamped envelope, in May 2011. A reminder was sent after 2 weeks (Figure 1). The study followed the guidelines of the declaration of Helsinki and was approved by the Regional Ethics ¨ rebro (D-nr 2011/116). committee in Uppsala-O Statistical procedure Data were summarised to provide frequencies and percentages. Chi-squared tests were used to analyze potential age and gender differences. Probability values of 50.05 were considered statistically significant. The data were processed using the Statistical Package for the Social Sciences (SPSS ; IBM, Armonk, NY) version 17.0.
Results The response rate was 58% (women 66%; men 50%) as 117 of the 201 available persons answered the questionnaire. No significant Patients presently at the centre = 83 Earlier patients at the centre = 128 n = 211 External exclusions n = 10 (2 deceased; 7 emigrated; 1 not possible to identify) Questionnaires sent out by mail n = 201
Questionnaire The study-specific questionnaire was constructed in several steps to identify content areas and relevant questions. Initially, the definition of the concept of life-situation was identified through the literature. Secondly, experiences from members of the specialised, multidisciplinary team were collected. Finally, inspiration and examples of questions were collected from two reports
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Did not answer the questionnaire n = 84 Answered the questionnaire n = 117
Figure 1. Flow chart. The questionnaire was answered by 58% of the included patients.
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differences for age or gender were found between the group who answered and those who did not (p ¼ 0.060). Table 1 presents the demographic characteristics of the participants. A majority (71%) of the participants, were living with a spouse, about half of them (52%) had children who lived at home. Among the participants 44% were living in a house of their own and 56% in a flat. Drivers’ licences were held by 80%, with no significant differences concerning age or gender found. All the participants stated that they used different modes of transportation such as walking, cycling and driving. About 45% commonly used public transportation, such as buses, trains, the underground or trams. Percentages for extent, form and level of limb deficiency, other disabilities, surgery and use of assistive devices are displayed in Table 2. The most common extent of deficiency was unilateral, transverse deficiency below the elbow. Twenty-seven per cent Table 1. Patient demographic characteristics. Respondents (n ¼ 117)
Non-respondents (n ¼ 84)
Age groups 20–29 years 52 30–39 years 41 40–49 years 18 450 years 6 Mean age Mean SD 32.99 10.2 Living situation (n ¼ 116) With partner and children 54 With partner 29 Single 26 Single with children 7 Home (n ¼ 116) Flat 65 House 51 Driving licence (n ¼ 116) Yes 93 No 23 Usual mode of transport (n ¼ 117) a 86 Walking Driving a car 79 Riding a bicycle 63 b 55 Use of public transport Getting a lift 17 6 Use of transport servicec
40 29 14 1 30.79 8.3
a
One person uses rollerblades, one person uses electrical wheelchair. Bus, underground, tram, train or flight. c Transport service or taxi. b
Table 2. Extent, form and level of CLRD, other disorders, surgical operations and use of assistive devices. Use of Limb Other Surgical assistive deficiency disorders operations devices (n ¼ 117) (n ¼ 117) (n ¼ 116) (n ¼ 117) Extent Upper limb (unilateral) Lower limb (unilateral) Multiple deficiencies Form Longitudinal Transversal Levela Hand Forearm Upper-arm a
Transversal CLRD.
108 5 4
50 3 3
24 4 3
73 5 1
16 101
8 48
11 20
9 70
13 5 2
12 56 2
33 63 5
of the participants had gone to surgery, related to the limb deficiency. Those who had a lower limb deficiency had more surgical treatment compared to those with upper limb and multiple deficiencies (p ¼ 0.001). About 11 out of 16 with a longitudinal type of deficiency had gone through surgery. Very few with a transverse upper limb deficiency reported any surgery at all. Usage of some kind of assistive devices, e.g. prostheses, splints or mobility devices were reported by 68%. More women than men used assistive devices in everyday life, though no significant difference was found (p ¼ 0.570). Participants with a deficiency of the upper limb frequently used functional prostheses like myoelectric or body-powered prostheses. Body-powered mechanical arm prostheses were used exclusively by men within the study sample. Cosmetic prostheses were used to a higher degree by women (p ¼ 0.008). The educational level of the participants in relation to CLRD, age and gender is shown in Table 3. All participants had completed elementary school. Upper secondary school had been completed by 95% and 50% had studied at college or university level. A majority of those with a university degree had studied 3 years or more. There was a significant difference between men and women (p ¼ 0.015) in relation to educational level where 60% of the women had studied at college or university level compared to 36% of the men. The opposite percentages were true for upper secondary level. For 5% of the participants, elementary school was their highest level of education. For this study, the participants’ current life situation is reported in terms of their educational level, main daily occupation, work situation, leisure activities, self-reported general health and thoughts about the future. At the time of the investigation 11% were studying full time, at university level or advanced educational training and the studies were meant to lead to a professional degree for most of them. Among the participants, 7% were unemployed, 3% were on sick leave (all women) and 2% were retired. Of the unemployed, the majority were women between 20 and 39 years of age. Main daily occupation is shown in relation to CLRD, age and gender in Table 3. Paid employment was the main occupation for 77% of the participants, shown in Table 3. Of the employed, 82% had permanent employment, 11% had temporary employment and 8% owned their own business (six men and one woman). Of those who were temporarily employed, eight were women and two were men (p ¼ 0.039). In relation to employment, 60% of the participants (64% of them men) were employed in private companies and 35% (88% of them women) were employed in the public sector. Most of those who worked, worked full-time (80%). The main occupational groups are displayed in Table 4. Work that demands a higher level of physical effort was more common among younger participants with deficiency of the upper limb. No significant differences were detected with regard to physical effort, age or gender. None of the respondents rated their ability to work as being poor in relation to the physical, psychological and mental demands of their work. Only 5% indicated that they were dissatisfied with their jobs. Their jobs represented different levels of physical effort, thus work satisfaction had no correlation with the physical effort of the work (Table 3). Concerning general work capacity, 26% of the employed participants rated their capacity to work as reduced (Table 3). A few, 3% (women, 30–39 years), stated that their capacity to work was greatly reduced. Leisure activities were reported and are shown in Table 5. The participants participated regularly in social activities in the community. Most common was going to the cinema and spending time with relatives and friends. Using the computer, reading and watching TV were also common leisure activities (90%). A large
b
Statistics Sweden (2008) [10]. CDUST (2008) [23]. c Statistics Sweden (2011) [25].
a
Number of patients Education – level (n ¼ 117) Elementary school Upper secondary school College/University Main daily occupation (n ¼ 116) Employed Student Unemployed On sick-leave Retired Employment (n ¼ 93) Permanent employment Temporary employment Self-employment Employer (n ¼ 93) Private company Public sector Other Work – level of effort (n ¼ 93) Sedentary work Light work (requiring some mobility) Moderately heavy work Heavy work Self assessed general work capacity (n ¼ 93) Not reduced Partially reduced Greatly reduced Self-assessed general health (n ¼ 116) Very good Good Bad Thoughts about the future (n ¼ 115) Optimistic Not optimistic
CLRD
5 0 3 2 4 1 0 0 0 4 0 0 3 1 0 2 1 1 0 2 1 1 0 5 0 5 0
6 47 55 82 11 8 4 2 70 9 7 50 32 4 39 18 23 6 65 19 2 45 60 2 93 13
Lower-limb (unilateral)
108
Upper-limb (unilateral)
3 1
2 1 1
2 1 0
1 1 1 0
3 0 0
2 1 0
3 1 0 0 0
0 2 2
4
Multiple
42 8
23 27 1
27 9 0
11 6 15 4
23 12 1
28 6 2
34 12 4 1 0
2 33 17
52
20–29
40 1
18 22 1
32 4 3
22 10 6 1
22 14 3
30 4 5
37 0 3 1 0
1 10 30
41
30–39
Age
15 3
6 11 1
7 8 0
8 2 4 1
10 5 0
15 0 0
15 1 0 2 0
0 7 11
18
40–49
4 2
0 6 0
3 0 0
1 2 0 0
1 2 0
3 0 0
3 0 1 0 2
3 2 1
6
450
58 8
27 37 2
41 7 3
23 13 12 3
20 29 2
42 8 1
47 8 7 4 1
4 22 41
67
Female
43 6
20 29 1
28 14 0
19 7 13 3
36 4 2
34 2 6
42 5 1 0 1
2 30 18
50
Male
Gender
Total
101 14
47 66 3
69 21 3
42 20 25 6
56 33 4
76 10 7
89 13 8 4 2
6 52 59
117
88% 12%
41% 57% 3%
74% 23% 3%
45% 22% 27% 6%
60% 35% 4%
82% 11% 8%
77% 11% 7% 3% 2%
5% 44% 50%
All participants
Table 3. Educational level, main daily occupation, work situation, general health and thoughts about the future – shown in the categories; CLRD, age and gender.
7%a
7%c
Vg þ G 75%b
69%a 30%a 1%a
40%a 32%a 26%a
65%a 34%a 1%a
66%a
75%a
78%a 13%a 9%a
23%a 51% a 24%a
With disability
19%a 45%a 38%a
Total
Population
DOI: 10.3109/09638288.2013.854839
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Table 4. Occupational groups. Occupational group (n ¼ 93)
Gender
Age
Limb reduction
Total
Populationa
Management work
Women Men
0 4
20–29 30–39 40–49 450
0 4 0 0
Upper Lower Multiple
3 1 0
4
4.3%
5%
Work requiring theoretical specialist skills
Women Men
22 8
20–29 30–39 40–49 450
8 17 4 1
Upper Lower Multiple
28 1 1
30
32.2%
19.7%
Work requiring a shorter university education
Women Men
8 6
20–29 30–39 40–49 450
2 7 5 0
Upper Lower Multiple
14 0 0
14
15.0%
20.3%
Office administration and customer service
Women Men
5 2
20–29 30–39 40–49 450
2 3 1 1
Upper Lower Multiple
7 0 0
7
7.5%
8.6%
Service, healthcare and social work, sales
Women Men
10 3
20–29 30–39 40–49 450
6 5 1 1
Upper Lower Multiple
12 1 0
13
13.9%
18.9%
Work in the fields of agriculture, horticulture, forestry and fishing
Women Men
–
20–29 30–39 40–49 450
–
Upper Lower Multiple
–
0
0%
1.8%
Professions within construction and manufacturing
Women Men
0 5
20–29 30–39 40–49 450
3 0 2 0
Upper Lower Multiple
5 0 0
5
5.3%
10.9%
Processing and machinery operation, transportation
Women Men
0 9
20–29 30–39 40–49 450
7 1 1 0
Upper Lower Multiple
8 1 0
9
9.7%
10.0%
Elementary occupations
Women Men
6 5
20–29 30–39 40–49 450
8 2 1 0
Upper Lower Multiple
9 0 2
11
11.8%
4.4%
Armed forces
Women Men
–
20–29 30–39 40–49 450
–
Upper Lower Multiple
–
0
0%
0.3%
a
Swedish statistics (2008) [10].
Table 5. Leisure activities.
Participation in study circle or course (n ¼ 116) Meeting relatives and friends (n ¼ 117) Doing creative activitiesa (n ¼ 116) Participating in any social eventsb (n ¼ 115–116) Recreation Gardening (n ¼ 116) Care of house pet (n ¼ 116) Visiting the countryside (n ¼ 116) Media Using a computer (n ¼ 116) Watching TV (n ¼ 116) Reading books or newspapers (n ¼ 116) Physical activities Physical exercise for at least 30 min (n ¼ 117) a
Every week
Sometimes
Rare/never
5 98 25 0–6
16 19 40 16–95
95 0 51 21–84
36 40 30
38 11 64
42 65 22
99 111 101
16 4 12
1 1 3
84
22
11
Playing an instrument, singing or engaging in another creative activity. Sports events, the theatre, exhibitions, concerts, the library or the cinema.
b
DOI: 10.3109/09638288.2013.854839
number of participants, 72%, exercised at least 30 min once a week. No significant differences were found in relation to age or gender. About 50% participated in various group activities in their spare time. Estimated time per week for unpaid domestic work was described and 35% spent 0–10 h/week, 33% spent 411–21 h/week and 37% over 21 h/week on domestic work. Women spent significantly more time on unpaid work than men (p ¼ 0.009). There was also a significant difference in reference to age where the younger respondents spent less time on unpaid work than the older ones (p ¼ 0.001). The participants’ self-assessed general health and thoughts about the future is shown in relation to CLRD, age and gender in Table 3. Most of the participants considered their health to be good or very good and only 2% considered it to be bad. Many, 87%, were optimistic about their future. No significant differences were found in relation to age or gender. Concerning perceived job security and current ability to work, 8% of the respondents worried about losing their jobs within the next year. On the other hand, 88% declared that based on their health today they would be able to work at their current job 2 years from now.
Discussion This is the first study that presents the life situation of people with CLRD in Sweden providing information regarding daily occupation, leisure activities, use of assistive devices and self-reported general health. The results add new knowledge about parts of the life situation of these people. Overall, the results are positive, especially concerning educational level, employment and leisure activities among the participants. Unilateral transversal upper limb deficiency was, as expected, the dominant reduction deficiency among the participants and the frequency of other disorders, apart from CLRD, corresponds well with the Swedish population as a whole [10]. The participants’ family life and living condition seemed not to differ in comparison to the population [22] and few appeared to avoid demanding activities, such as home repair work and gardening. The number of participants that had completed a postsecondary education is far above the average of the population [10] and women had a higher level of education than men. The time spent in healthcare services during childhood and youth did not show any negative impact on the educational options for participants in this study, contrary to what Weir et al. [11] had feared concerning this group. The majority of the participants were employed or self employed, a higher proportion compared to the Swedish population with some form of disability [10]. The number of unemployed participants is well correlated to the total population in Sweden at the time of the investigation [25]. Professions represented among the participants differed in three ways from the population: (i) a higher percentage of participants with professions requiring theoretical specialist skills, (ii) a higher percentage with elementary professions that require no specific education and (iii) a lower percentage with professions within construction and manufacturing. Employment in the private sector was most common, men to a significantly greater extent than women. About 25% of the employed participants rated their general work capacity as partially or greatly reduced. However, in their current profession and in relation to its demands, no employed participant assessed their work ability as reduced. These different views may be related to two dimensions of personal causation [26]; sense of personal capacity and sense of self-efficacy. Also relevant are elements such as, satisfaction, roles and perceptions of expectations. Young participants with jobs demanding a high level of physical effort reported uncertainty about their ability
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to continue in their current job in 2 years time. One reason could be the strain on the body and a considerable risk of an uneven load on the fully developed limbs. As a result, jobs with a higher level of physical effort could be considered a short term solution for people with CLRD. There were no significant differences between participants who were employed, unemployed or on sick-leave, concerning any of the measured variables in the study except whether or not they hold a driving license. The reason for not holding a driving licence was reported to be due to the required and expensive adaptations of the car. Conventional body-powered upper-limb prostheses were used exclusively by men in this study, and cosmetic hand prostheses, had a higher usage among women. These findings are supported by previous research [10,27]. There is also a relationship between the use of different assistive devices and the kind of work to be performed [27]. The participants in this study reported that they, to a great extent, had the assistive devices they needed for the demands of their current job. Concerning leisure time the participants showed the same pattern as adults in general [23], and there were no significant differences between age and gender. These results differ from those of an earlier study [12] that showed that people with congenital physical deficiency are passive participants in leisure activities. Concerning unpaid domestic work, there were differences within gender and age, where women and older people spend more time on these activities than men and younger people. Compared to the general population [23], the differences are consistent. The general health among the participants in this study was better than that reported for the Swedish population [23]. The representativeness of the sample was considered when inviting all potential participants from one of Sweden’s largest units for persons with congenital limb dysfunction. A multicentre approach could have invited all persons with congenital limb dysfunction living in Sweden. The response rate was fair (58%) and the analyses of demographic data revealed no significant differences between responders and non-responders. The sample seems to be representative but there is no control for whether those who are more content with their life-situation were overrepresented in the final sample. Also, the results cannot be generalized to other parts of the world without considering the general welfare and health care system of that specific country. In concordance with previously registered data [2,3], only a few people reported limb reduction in the lower extremities. Several steps were taken to ensure questionnaire quality. Initially, a literature search was performed to reflect and describe the concept ‘‘life-situation’’. Both internal and external perspectives were identified and an external perspective was chosen for the present study. Thereafter, other published sources of information were used when formulating the questions and the response options. Steps were then taken to ensure that the questions were easily understood and that the response options were adequate. Collecting viewpoints from both specialised professionals and persons with CLRD further enhanced face validity. The choice to send the questionnaires by post was based on the fact that there was no available information of e-mail addresses. Filling in and sending questionnaire by e-mail is often considered less time-consuming than using regular post. Using regular post may have negatively influenced the response rate. Pre-addressed and stamped envelopes were supplied to facilitate response. Whether the reported life-situation is dependent on the limb reduction is not possible to conclude using a cross-sectional design [28]. Longitudinal studies would be more appropriate for drawing such conclusions. For a richer and more complete picture of the life-situation of people with congenital dysfunction, an internal perspective should be addressed using a qualitative
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approach. Occurrences of strain injuries among adults with CLRD is unknown, as is whether those injuries can be related to use of assistive devices, or influenced by other factors. Prostheses are continuously developed for sophisticated functions and aesthetics and further research is needed to investigate the benefits and the cost effectiveness of these devices from the point of view of people with CLRD and their life situation.
Conclusions This study described the current life situation of 117 adults with CLRD in relation to their main daily occupations with a perspective from Swedish society. The results showed that the participants, to a great extent, were educated and employed. Onefourth of them reported a reduced work capacity in general but a high level of work ability in relation to their current work tasks. The percentages of participants outside the labour market correspond well to the Swedish population as whole. The results also showed that the participants were highly involved in social and physical activities during their leisure time. Two out of three use some kind of assistive device in their daily life and the need was met to a high degree. For a person with a congenital dysfunction experiences continuously establish and influence their desires during life. The information in this study is crucial and can be used in planning health services and rehabilitation programmes for people with CLRD of different ages, as well as providing some answers to questions from parents of new born children with CLRD.
Acknowledgements The authors would like to thank everyone who took part in the ¨ rebro study and the staff of The Limb Deficiency Centre at O University Hospital.
Declaration of interest The authors report no declarations of interest. The work was funded in part by Norrbacka Eugenia-foundation, Stockholm, and ¨ rebro University Hospital. the Centre for Health Care Sciences, O
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9. Kielhofner, G. Doing and becoming: occupational change and development. In: Kielhofner G, ed. Model of human occupation. 4th ed. Baltimore: Lippincott Williams & Wilkins; 2008:126–40. 10. Statistics Sweden [Internet]. Labour market situation for disabled persons – 4th quarter 2008. (In Swedish: Funktionshindrades ¨ rebro: SCB. situation pa˚ arbetsmarknaden- 4:e kvartalet 2008) O [cited 2011 March 4]. Available from: http://www.scb.se [last accessed 7 Nov 2013]. 11. Weir S, Ephraim P, MacKenzie E. Effects of paediatric limb loss on healthcare utilisation, schooling and parental labour supply. Disabil Rehabil 2010;32:2046–55. 12. Specht J, King G, Brown E, Foris C. The importance of leisure in lives of persons with congenital physical disabilities. Am J Occup Ther 2002;56:436–44. 13. Michielsen A, Van Wijk I, Ketelaar M. Participation and quality of life in children and adolescents with congenital limb deficiencies: a narrative review. Prosthet Orthot Int 2010;34:351–61. 14. Murray C. Being like everybody else: the personal meaning of being a prosthesis user. Disabil Rehabil 2009;31:573–81. 15. Krantz O, Bolin K, Persson D. Stigma-handling strategies in everyday life among women aged 20 to 30 with transverse upper limb reduction deficiency. Scand J Disabil Res 2009;10: 209–26. 16. Michielsen A, Van Wijk I, Ketelaar M. Participation and healthrelated quality of life of Dutch children and adolescents with congenital lower limb deficiencies. J Rehabil Med 2011;43: 584–661. 17. Hermansson L, Eliasson AC, Engstro¨m I. Psychosocial adjustment in Swedish children with upper-limb reduction deficiency and a myoelectric prosthetic hand. Acta Paediatr 2005;94:479–88. 18. Ylima¨inen K, Nachemson A, Sommerstein K, et al. Health-related quality of life in Swedish children and adolescents with limb reduction deficiency. Acta Paediatr 2010;99:1550–5. 19. Christiansen C, Clark F, Kielhofner G, Rogers J. Position of paper: occupation. Am J Occup Ther 1995;49:1025–18. 20. Reed K, Sanderson SN. Concepts of occupational therapy. 4th ed. Baltimore: Lippincott Williams & Wilkins; 1999:132–8. 21. World Health Organization. International classification of functioning, disability and health. Geneva: World Health Organization; 2001. 22. Statistics Sweden [Internet]. Background Facts, Population and Welfare Statistics 2010:4. Changes in the Life Conditions Survey 2006–2008. A study in the Comparability of Welfare Indicators over Time. (In Swedish: Fo¨ra¨ndringar i underso¨kningar av levnadsfo¨rha˚llanden 2006–2008. En studie av ja¨mfo¨rbarheten o¨ver tid fo¨r ¨ rebro: SCB. [cited 2011 March 4]. va¨lfa¨rdsindikatorerna) O Available from: http://www.scb.se [last accessed 7 Nov 2013]. 23. CDUST – County Council in Uppsala (C) So¨rmland (D) ¨ rebro (T). (In Swedish: Va¨stmanland (U) Va¨rmland (S) and O CDUST- Landstingen i Uppsala (C), So¨rmlands (D), Va¨stmanlands ¨ rebro (T) la¨n. Life and Health 2008: (U), Va¨rmlands (S) och O Results from investigation about living conditions, habits of life, health and health care service. Report nr 1, 2008. (In Swedish: Liv och ha¨lsa 2008: Resultat av en underso¨kning om livsvillkor, levnadsvanor, ha¨lsa och va˚rdkontakter. Rapport nr 1, 2008) ¨ desho¨g: Danaga˚rds grafiska; 2008. O 24. The National Tax Board. [Internet] Swedish System for Population Registration (In Swedish: Folkbokfo¨ringssystemet) [cited 1 April 2011]. Availible from: http://www.skatteverket.se [last accessed 7 Nov 2013]. 25. Statistics Sweden [Internet]. (In Swedish: Statistiska centralbyra˚n) [cited 2011 Aug 4]. Available from: http://www.scb.se [last accessed 7 Nov 2013]. 26. Kielhofner G. Volition. In: Kielhofner G, ed. Model of human occupation. 4th ed. Baltimore: Lippincott Williams & Wilkins; 2008:32–50. 27. Kyberd P, Hill W. Survey of upper limb prosthesis users in Sweden, the United Kingdom and Canada. Prosthet Orthot Int 2011;35: 234–41. 28. Altman D. Practical statistics for medical research. London: Chapman & Hall; 1991.
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Appendix Questionnaire Life situation of adults with congenital limb reduction deficiency in Sweden
œ œ œ œ œ œ œ What?
1569
Fulltime house holding Student Unemployed, without allowance Unemployed, with allowance On sick-leave Retired Other . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . ..
Demographic features Mark the correct alternative with a cross (1) I am a œ Woman œ Man (2) I was born in. . .. . .. . .. . .(year) (3) With whom do you share your residence? (More than one alternative may be marked) œ None œ Parents/siblings œ Husband/Wife/Partner œ Children, 0–6 years number. . .. . ... œ Children, 7–12 years number. . .. . ... œ Children, 13–17 years number. . .. . ... œ Children, 18 years and older number. . .. . ... œ Other adult (4) 4. What type of housing do you live in? œ Flat œ Terraced house œ (Private) house œ Block of service flats œ Room/lodgings œ Other (5) Do you hold a drivers’ licence? œ No œ Yes (6) Do you, or someone in your household, have access to a car? œ No œ Yes (7) How do you usually travel to different places? (More alternatives can be marked) œ Walk œ Cycle œ Drive a car œ Get a lift œ Mobility service œ Taxi œ Bus œ The underground œ Tram œ Train œ Other What?. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. (8) What is your highest level of education? œ Elementary school/9-year compulsory school œ Junior secondary school/girl’s school œ 2-year upper secondary school or vocational school œ 3-to-4-year upper secondary school œ University or college, 2.5 year or less œ University or college, 3 years or more œ Other education What? . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. (9) Did your education result in a profession? œ No œ Yes What profession?. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . ..
Main mainly occupation (10) What is your current main daily occupation? œ Employed œ Owner of a company œ On parental leave œ On leave (of absence)
If you are a student, please answer the following three questions. If you are not a student, please continue to page number 5. (11) At what educational level are you currently studying? œ Upper secondary school œ Vocational training course œ Advanced vocational education œ College/university – 53 year œ College/university – 3 year or more œ Other What?.................................................................................................. (12) What is the extent of your studies at present? œ Fulltime œ Part time Rate of study:. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . . œ Other What? . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. (13) Will your studies result in a particular profession? œ No œ Yes What profession? . . .. . .. . .. . .. . .. . .. . .. . .. . .. œ Don’t know If you are employed, on parental-, absence- or on sick leave please answer the following 12 questions. If not, please continue to page 8. (14) What is your current profession? . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. (15) What is your main form of employment œ Permanently employment œ Temporarily employment œ Self-employment (16) Who is your main employer? œ Private company œ Myself or someone in my family œ The local government œ The county council œ The State œ Other (17) How many hours a week does you normally work . . .. . .. . .. . .. . .. . .. . .. . .. . .hours a week (18) Would you like to work more or less during a week? œ I want to work less during a week œ I want to work more during a week œ Neither more nor less (19) How would you assess your current ability to work compared to the physical demands of your job. œ Very good œ Fairly good œ Reasonably œ Fairly bad œ Very bad (20) How would you assess your current ability to work compared to the psychological demands of your job. œ Very good œ Fairly good œ Reasonably œ Fairly bad œ Very bad (21) How physically demanding is your job? œ Sedentary work (You sit still most of the time) œ Light, with some mobility (You are mobile but do not carry heavy things)
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œ Moderately heavy work (You walk a lot and carry heavy things) œ Heavy work (Your work is physically demanding and there is significant strain on your body) Comments: . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . . . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . ... . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . ... (22) How satisfied are you with your current job? œ Very satisfied œ Fairly satisfied œ Neither satisfied or dissatisfied œ Fairly dissatisfied œ Very dissatisfied (23) Regarding your health – do you think you will be able to stay at your current job for the next 2 years? œ No, hardly œ Maybe œ Yes, probably (24) Are you concerned about losing your job within the year? œ Very concerned œ Fairly concerned œ Not hardly concerned œ Not concerned at all (25) Would you assess your work capacity as reduced? œ Yes, a lot œ Yes, partially œ No œ I don’t know
œ 11–20 h/week œ 21–30 h/week œ 31 h/week or more (29) Are you an active member of a group, organization, association or religious community? (More than one alternative may be marked) œ No œ Yes, active in a trade union œ Yes, active in a political party œ Yes, active in a nature/environmental organization œ Yes, active in a sports association œ Yes, active in a relief organization œ Yes, active in an association for disabled persons œ Yes, active in an association for retired persons œ Yes, active in a religious community œ Yes, active in a choir, orchestra, theatre group or some other company engaged in cultural activities œ Yes, active in a housing co-operative/property owner’s association œ Yes, active in a Board of Education œ Yes, active in a another association or organization
LIMB DEFICIENCY, ASSISTIVE DEVICES AND GENERAL HEALTH (30) Describe your limb deficiency – please use a coloured pen to mark the parts of the hand, arm, foot or leg that you are missing.
Leisure activities and interestsa (26) How often do you do the following activities in your spare time? (Mark with a cross on each line)
Every Every Every Every More Day week month year seldom Never Go to a sports event without participating Go to the theatre Go to an exhibition/museum Go to a concert Go to the library Go to the cinema Participate in a study circle or course Go to a bingo hall Garden Take care of domestic animals Take a walk in the country side, go fishing, hunting and boating Sing, play an instrument, dance, paint, sew or do other creative activities Use a computer Watch TV See friends and relatives Read newspapers/books
(27) Do you exercise continuously at least 30 min? œ Practically never œ Sometimes/irregularly œ Approximately once a week œ At least twice a week (28) How many hours a week (on an average) do you spend on housework (unpaid work), for example child care, care of family members, shopping, cooking, overseeing household expenses, washing or cleaning. œ 0–2 h/week œ 3–10 h/week
Comments: ........................................................................................... ................................................................................................................ ................................................................................................................ (31) Have you had any surgery of your reduced limb? œ No œ Yes Please describe . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . . . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . . . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . . (32) Do you make use of any of the following assistive devices? (More than one alternative may be marked) œ Hand prosthesis œ Arm prosthesis œ Lower limb prosthesis œ Foot prosthesis
DOI: 10.3109/09638288.2013.854839
œ œ œ œ œ œ œ
Lower limb orthotic Adapted shoes Crutches, walking sticks Walker (with or without wheels) Wheel chair Other What?. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . . I do not use assistive devises
Use of upper limb prosthesis (33) What kind of upper limb prosthesis do you use? (More than one alternative may be marked) œ Myoelectric prosthesis œ Electric prosthesis œ Body-powered prosthesis œ Hook œ Wrist powered prosthesis œ Cosmetic hand prosthesis œ Partial hand prosthesis œ Other kind of upper limb prosthesis What?. . .. . .. . .. . .. . .. . .. . .. . .. . . œ I don’t know (34) Do you have the use of the assistive devices that you need. . . . . .for managing your work tasks? œ Yes œ No . . .for practising and participating in leisure activities œ Yes œ No If no, please comment: . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . . . . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . .. . . (35) Apart from your limb deficiency, do you suffer for some other disease, disorder or impairment? œ Asthma/allergy œ Neuropsychiatric disease
Life situation of adults with limb reduction
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œ Diabetes œ Dyslexia œ Deafness œ Epilepsy œ Heart/vascular disease œ Hearing-impairment œ Abdomen-/intestinal disease œ Pulmonary disease œ Psoriasis œ Mental illness œ Mental retardation œ Physical impairment œ Speech disorder œ Visual handicap œ Other What?........................................... œ No, nothing (36) How do you assess your general health? œ Very good œ Good œ Fairly good œ Bad œ Very bad (37) What do you think about your personal future? œ I am very optimistic œ I am fairly optimistic œ I am neither optimistic nor pessimistic œ I am fairly pessimistic œ I am very pessimistic Please answer the questionnaire and return it using the stamped envelope, before Friday the 10th of June 2011.
THANK YOU FOR YOUR PARTICIPATION!
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