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The Vision and Living Skills Research Project:

Levels of daily living skills and self-concept in children and adolescents with severe vision impairment

School Years: Living Skills

Christine Johnston

Senior Lecturer

Department of Family and Community Nursing M02

University of Sydney

New South Wales 2006

Australia

61 2 9351.0567

cjohnston@nursing.usyd.edu.au

Additional Authors: Rosemary Flavel (University of Sydney) and Helen Lunn (Royal Blind Society)

Project Background

Royal Blind Society, a state-wide agency in New South Wales (NSW), Australia, offers services to individuals with vision impairment across the lifespan. In 1999, they initiated a three year research collaboration with The University of Sydney to explore possible approaches to assisting in the acquisition of daily living skills. The Vision and Living Skills (VaLS) Research Project had its genesis in a survey which Royal Blind Society conducted in 1996 to determine the needs of client families who had children aged 5 to 12 years with vision impairment or blindness. The data obtained from 122 families spread across metropolitan and rural NSW and the Australian Capital Territory (ACT) pointed strongly to parents’ concerns about their children’s ability to cope with the skills of daily living. In fact, 64.5% saw their child as having difficulties at home in such areas as eating, meal preparation, personal care, chores and the use of appliances. These findings were seen as important for three reasons.

Firstly, 84.4% of the children were attending regular schools where, in contrast to segregated settings, daily living skills were unlikely to form part of the curriculum. Where such skills were to be taught and by whom, therefore needed to be addressed. Secondly, it was somewhat surprising that these skills should emerge so clearly as an issue given the young age of the children. It might be assumed that parents would have lower expectations for their children with vision impairment or blindness and that they would accept a higher level of dependence. This did not seem to be the case. Thirdly, parents were expressing their concerns about their child’s capabilities in a familiar environment. It had to be wondered how much less able these children would be outside the home. Assisting with the acquisition of daily living skills was therefore identified as a service delivery problem.

Similar concerns have been expressed in other studies. For example, Mouchet Garcia (1991) pointed to parents’ concerns with their children’s eating habits and to the important role such skills play in achieving social integration for people with vision impairment or blindness. Walker, Tobin and McKenney (1992, p.83), in a large-scale needs analysis in Britain, found that 9% of children (aged 3 to 18 years) with vision impairment or blindness were reported as not being able to do any of the daily living skills listed. Furthermore, only 68% were able to ‘wash all over or bath’, 73% to ‘comb or brush own hair’, 75% to ‘dress oneself’ and 77% to ‘feed self with a knife and fork’. The findings of a more recent Canadian study are similar (Canadian National Institute for the Blind, 2000a, 2000b). Much of the school curriculum, Walker et al. (1992, p.83) argue, presupposes competence in many of these areas. Without these basic skills, children and young adults are placed at a disadvantage additional to that arising from their vision impairment or blindness and the likelihood of their being independent as adults is diminished.

Deficits in daily living skills are liable to have other negative consequences. Kirchner and Peterson (1989) estimated that 69% of working-age people with vision impairment or blindness are unemployed or underemployed. Sacks and Pruett (1992, p.211) and Rath and Appelhans (1994, p.31) see part of the difficulty as lying in the failure to provide adequate transition training specific to their needs. Managing everyday tasks is a critical facet of such training.

In addition, Beach (1995), in a study of 36 adults with vision impairment, found that level of self-esteem was related to dependence on others, motivation to learn and difficulty with daily living skills. Similarly, Dodds (1989) suggested that early skill-oriented intervention can prevent loss of competence, increase self-efficacy and foster positive adjustment. These factors may be best seen as relating to quality of life, which Halpern (1993) argues provides the best conceptual framework for assessing outcomes. The attainment of the basic skills of daily living is therefore fundamental.

The aim of The Vision and Living Skills (VaLS) Research Project was to explore in some depth the factors affecting the development of daily living skills and to identify a range of effective intervention techniques for children and their families.

Project Aims

More specifically, The VaLS Research Project has addressed the following questions:

  1. What impact does severe vision impairment have on the development of daily living skills?
  2. What other factors in the individual, the family and the community affect the development of daily living skills in children and young adults with vision impairment or blindness?
  3. What impact does level of independence have on the child and the family?
  4. What models of service delivery best meet the needs of a client group which has highly specialised needs and is geographically scattered?
  5. What approaches to teaching/learning and training materials link best with the service delivery models preferred by the client group?

The findings of the project are being presented at this conference in three papers and a poster. They each consider a different aspect with the present paper addressing Question 1 and part of Question 3; Flavel, Lunn and Johnston (2002) Questions 1 and 2; Lunn, Johnston and Flavel (2002) Question 4 and the poster, Lunn, Johnston, Flavel et al. (2002) Question 5.

Method

On commencing the project it became apparent that, while staff in the agency had a wealth of clinical experience and soundly based insights into the development of people with severe vision impairment, systematic research data on the acquisition of daily living skills were not available. The first stage of the study was therefore concerned with exploring the level of independence in children and adolescents and with attempting to compare their skill levels with their sighted peers.

In the second stage, as part of a more intensive examination of the factors affecting the acquisition of independence skills, self-concept was also considered but with a smaller sample size.


Measuring Instruments


Daily Living Skills

The Scales of Independent Behavior – Revised (SIB-R) (Bruininks, Woodcock, Weatherman & Hill,1996) was chosen as the most appropriate measure for determining levels of daily living skills. As Woo and Knowlton (1992, p.74) point out, the scales assess a broad range of diverse functional skills and do so in enough depth to make detailed analysis possible. They also have the advantage of taking a lifespan approach, making them suitable for considering the skills of individuals from the preschool years to adulthood. The scales have been normed with data gathered from 2,182 individuals in 15 states across the United States of America (Bruininks et al., 1996). Although normed only to that population, some degree of comparison is possible. They are administered through a structured interview protocol given to the parent or carer, which allows their administration with minimum intrusion on the individual and the family. Finally, it is worth noting that their specificity and range allows them to be used to indicate possible areas for intervention.

Although the SIB-R covers four broad clusters relating to independence: Community Living Skills, Personal Living Skills, Social Interaction and Communication Skills and Motor Skills, only the Personal Living Skills Cluster was utilised in the present study. Its five subscales (Domestic Skills, Personal Self-Care, Dressing, Toiletting and Eating and Meal Preparation) were seen as being most closely aligned to the areas which had been originally nominated by parents as of concern. These sub-scales were then adapted, with the permission of the publishers, to make them more appropriate to gauge skill levels in people with severe vision impairment. Such a task had already been undertaken by Woo and Knowlton (1992) with the earlier edition of the SIB. With their permission, their adaptations were utilised where possible. However, the inclusion of new items and the need to make it appropriate to the Australian context meant that further adaptation was needed. For the most part, these modifications to items involved the recognition of the use and role of adapted equipment in carrying out skills (e.g. “Uses the burners on an electric or gas stove” was modified by adding the phrase “may use modified burners or stoves that have adapted markers”). The changes made were therefore critical but maintained the integrity of the items and the scales. The modifications were discussed with a range of professionals working in the vision impairment field until consensus was reached on item wording.

The SIB-R enables scores to be presented in a number of ways. Thus, for example, they can be presented as raw scores, standard scores (with a mean of 100 and a standard deviation of 15 for the cluster and total scores only) or as difference scores where the individual’s score is seen as a discrepancy measure between what might be expected from the norms for an individual of that age and what has been achieved. Scores can be considered for each sub-scale or for a cluster. The analyses in this paper have utilised the standard score for the Personal Skills Cluster.

Self-Concept

The scales developed by Susan Harter and her colleagues were selected as best meeting the needs of the present study. The scales cover the full age range being studied, are based on a multi-dimensional view of self and, for the child and adolescent versions, contain a separate measure of self-worth. The scales used in the present study are: The Pictorial Scale of Perceived Competence and Social Acceptance (Harter & Pike, 1980), The Perceived Competence Scale for Children (Harter, 1980) and The Self-Perception for Profile for Adolescents (Harter, 1988). The items are presented in the form of two statements (or pictures in the original preschool version) with one demonstrating high competence or acceptance and the other lower competence or acceptance. The individual responds in two stages; first determining which person is most like him/her and then to what degree. A four point scale is thus obtained for each item.

These scales were adapted with Susan Harter’s permission for use with children who are vision impaired. The preschool version of the scale was changed to enable verbal presentation. Where needed, items that were dependent on vision (e.g. knowing colours) were replaced with ones deemed of equal developmental relevance. After considerable discussion the sub-scales in the child and adolescent versions related to physical appearance were retained. This was done because Harter (1999) and other researchers have found physical appearance to correlate highly with global self-worth. The role of perceived physical appearance was therefore seen as of interest in exploring the self-concept of children and adolescents with vision impairments. The decision was taken to present the scales verbally and on an individual basis to maximise understanding.

Sample

The data on level of daily living skills have been obtained from 221 children and adolescents drawn from Royal Blind Society’s client data base and living in both city and country areas of NSW and the ACT. They are in the age range of 3 to 18 years and include 102 females and 119 males. Those identified as having either a severe intellectual disability or a significant physical disability were not included in the sample, as it was anticipated that this degree of additional disability would have a major impact on acquisition of independent living skills.

Information on the individuals’ vision impairment, based on their most recent assessment, was obtained from their Royal Blind Society file with their or their parent’s permission. The WHO/PBL Eye Examination Record for Children with Blindness and Low Vision (Gilbert, Foster, Negrel & Thylefors, 1993) was used to record the data. However, based upon the clinical experience of the staff from Royal Blind Society and the results of the Hatton, Bailey, Burchinal and Ferrell (1997) study, it was decided to refine the categories to take account of potential functional vision differences not sufficiently catered for by the WHO system. This generated four categories:

1.     B1/4 – no light perception à 3/120

2.     P1/3 – 3/119 à <6/60

3.     V1/2 – 6/60 à <6/18

4.     V3 –    6/18 à 6/6

The characteristics of the sample are set out in Table 1 below.

 

Age in years

 

Vision

 

3 – 5

 

6 – 9

 

10 – 12

 

13 – 15

 

16 – 18

 

Total

 

B1/4

 

7

 

12

 

11

 

9

 

16

 

55

 

P1/3

 

17

 

13

 

4

 

7

 

6

 

47

 

V1/2

 

22

 

21

 

14

 

10

 

13

 

80

 

V3

 

4

 

8

 

10

 

9

 

8

 

39

 

Total

 

50

 

54

 

39

 

35

 

43

 

221

 

            Table 1: Number in the sample by level of vision impairment and age (in years)

Self-concept testing is still proceeding at the time of writing this paper. Involvement in the project was voluntary and in no way associated with receipt of services.

Information regarding participants’ independent living skills was obtained through parent/caregiver interviews (undertaken either face-to-face or by telephone), during which, as already discussed, the sub-scales of the Personal Living Skills cluster from the SIB-R were administered. Testers for both the daily living skills and self-concept measures are experienced allied health or early special education professionals. All scoring of test materials is undertaken by one member of the research team.


Results


Standard scores on the Personal Skills Cluster were calculated for the 221 participants. As previously stated, the standard scores on the SIB-R are based on a mean of 100 and a standard deviation of 15. Comparison of the scores obtained for the four groups of children and adolescents with vision impairment can therefore be made against that standard score. The means, standard deviations and minimum and maximum scores for each of the groups are given below in Table 2.

The means obtained for all of the groups are at least one standard deviation point below the mean obtained from the normative sample. In addition, all groups show substantial inter-group variation. In this connection it should also be noted from the maximum scores that, within all groups, some individuals are meeting age expectations for the skills of daily living tested. As the minimum scores attest, however, others are showing significant delays. It is evident therefore that, while the presence of a visual impairment does not inevitably result in a delay in the development of these skills, it certainly makes such delays more likely.

 

N

 

Mean

 

S. D.

 

Min.

 

Max

 

B1/4

 

55

 

61.38

 

19.46

 

24

 

104

 

P1/3

 

47

 

81.85

 

15.49

 

40

 

108

 

V1/2

 

80

 

75.88

 

22.02

 

20

 

117

 

V3

 

39

 

82.26

 

23.41

 

30

 

126

 

Total

 

221

 

74.67

 

21.86

 

20

 

126

 

Table 2: Means, standard deviations, minimum and maximum scores for each of the vision categories on the standard score for the Personal Living Skills Cluster (SIB-R)

The relative performance of the groups against the standard score is shown graphically in Figure 1.

Figure 1: Comparison of Personal Skills Cluster standard scores across the four levels of vision impairment included.

Analyses were also conducted to determine if there were any significant differences amongst the groups on level of daily living skills. Initial screening tests using Levene’s test for homogeneity of variance indicated equality of variance. As a consequence, a univariate analysis of variance was performed. A significant difference was found (F (3,217) = 11.57, p < .000). Post hoc comparisons using the Scheffe test found significant differences with the children and adolescents in the B1/4 (blind) group scoring significantly lower than those in each of the other groups (in all three comparisons p<.001).

Because testing is continuing with the self-concept measures no analyses have been undertaken to date.

Discussion

These analyses provide support for the view that children and adolescents with a severe vision impairment are likely to have lower levels of independence than their sighted peers. It must be acknowledged, however, that some caution is needed in interpreting the data. The norms used are American and some differences do exist between the two cultures with respect to the development of the skills concerned. Secondly, while the adaptations to the scale did not change its intent they did change the wording of some items and, therefore, the possible meaning to the respondents. Not to have made such changes would, however, have only increased any differences between those with vision impairment and their sighted peers. On this ground, then, the comparison can be justified.

In addition, the data, while not conclusive, would tend to suggest that there may be a critical level of vision below which the acquisition of the skills of daily living becomes more difficult. Indeed the results obtained are consistent with the broader developmental results of Hatton et al. (1997).

Finally, what these comparisons do not do is look at the impact of other personal characteristics and variables upon the acquisition of daily living skills. The potential impact of the presence of other disabilities, the child’s personality, gender and motivation together with parental attitudes to child rearing and the opportunity to learn and teach these skills must also be considered. This issue is pursued in Flavel, Johnston and Lunn (2002).


References


Beach, J.D. (1995). Self-esteem and Independent Living Skills of Adults with Visual Impairments. Journal of Visual Impairment and Blindness, 6, 531-540.

Bruininks, R.H., Woodcock, R.W., Weatherman, R.F. & Hill, B.K. (1996). Scales of Independent Behavior – Revised. Itasca, Ill.: Riverside Publishing.

Canadian National Institute for the Blind (2000a). The impact of vision loss on the development of children from birth to 12 years: A literature review. Toronto, Canada: Author.

Canadian National Institute for the Blind (2000b). The impact of vision loss on the development of children from birth to 12 years: Preschool age survey findings and summary. Toronto, Canada: Author.

Flavel, R., Lunn, H. & Johnston, C. (2002). The Vision and Living Skills Research Project: The effects of personal and family characteristics on the development of independence in 3 to 18 year olds. In Proceedings if the 11th World Conference of the International Council for Education of People with Visual Impairment. Noordwidjhout, The Netherlands. July-August.

Gilbert,C., Foster,A., Negrel, A.-D. & Thylefors, B. (1993). Childhood blindness: a new form for recording causes of visual loss in children. Bulletin of the World Health Organization,71, 5, 485-489.

 

Halpern, A.S. (1993). Quality of Life as a Conceptual Framework for Evaluating Transition Outcomes. Exceptional Children, 59, 6, 486-498.

Harter, S. (1980). The Perceived Competence Scale for Children Denver, Co.: University of Denver.

Harter, S. (1988). The Self-Perception for Profile for Adolescents. Denver, Co.: University of Denver.

 

Harter, S. & Pike, R. (1980). The Pictorial Scale of Perceived Competence and Social Acceptance. Denver, Co.: University of Denver.

Hatton, D.D., Bailey, D.B., Burchinal, M.R. and Ferrell, K.A. (1997). Developmental Growth Curves of Preschool Children with Vision Impairments. Child Development, 68, 5, pp. 788-806.

Kirchner, C. & Peterson, R. (1989). Employment: Selected Characteristics in C. Kirchner (ed). Blindness and Visual Impairment in the US. American Foundation for the Blind, New York.

Lunn, H., Johnston, C. & Flavel, R. (2002a). The Vision and Living Skills Research Project: Meeting the challenge of intervention in urban and rural communities. In Proceedings if the 11th World Conference of the International Council for Education of People with Visual Impairment. Noordwidjhout, The Netherlands. July-August.

Lunn, H., Johnston, C. & Flavel, R., Kain, S., Kaine, N., Fairnham, M. Steele, E. & McCauley, A. (2002b). The Vision and Living Skills Research Project: A flexible approach to teaching daily living skills A daily living skills teaching package for children and adolescents with severe vision impairment. In Proceedings if the 11th World Conference of the International Council for Education of People with Visual Impairment. Noordwidjhout, The Netherlands. July-August.

Mouchet Garcia, F. De L. (1991). Eating Habits: A Study of Learning Process of  Blind or Visually Impaired Young Children in The Proceedings of the 6th International Mobility Conference, Madrid 9-12 September, published by ONCE.

Rath, W. & Appelhans, P. (1994) A Career Education Project in Germany for Youth with Visual Impairments. RE:view, 26, 1, 29-34.

Royal Blind Society of NSW (1996). When Even Glasses Don’t Help, A survey of the needs of adult clients, Published by RBS, Sydney. ISBN 1 86387 681 2

Sacks, S.Z. & Pruett, K.M. (1992). Summer transition training project for professionals who work with adolescents and young adults. Journal of Visual Impairment and Blindness, 86, 5, 211-214.

Walker, E., Tobin, M. & McKenney, A. (1992). Blind and Partially Sighted Children in Britain: The RNIB Survey, Royal National Institute for the Blind, London.

Woo, I. & Knowlton, M. (1992). Developing a version of the Scales of Independent Behavior, Adapted for students with visual impairment. RE:view, 24,2, 72-83.


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