Short Breaks Services for Children with Autistic Spectrum Disorders: Factors Associated with Service...

Abstract Short break services in a UK county were

studied using a postal survey of 256 families with a

child with an autistic spectrum disorder (ASD).

Results confirmed high degrees of stress and low

levels of informal support for all families, but no

significant difference in the informal support available

to non-users as compared to users of short break

services. Robinson & Stalker’s (1990) 10-point

dependency scale showed a significant difference in

dependence and more difficult behaviors between

children of users and non-users. However, a large

number of non-users had children with high depen-

dence (scoring > 7 points). Access was denied by the

age of the child (under 11) diagnosis (Asperger syn-

drome), educational placement (mainstream) and lack

of social worker referral.

Keywords Autism Æ Asperger Æ Autistic spectrum

disorder Æ Short breaks Æ Respite Æ Family support

Short Breaks and Autistic Spectrum Disorders

‘Short breaks’ (or respite care services) have been

identified in the literature as a key support for fami-

lies with children with autistic spectrum disorder

(ASD) (Bristol & Schopler, 1983; Randall & Parker,

1999; Tarleton & Macaulay, 2003). Though the impact

of services on children has received little scrutiny

(Gerard, 1990; Preece, 2002), research has identified

their positive impact upon parents of children with

ASD. Stress levels are reduced in the majority of

families where short breaks services are available

(Chan & Sigafoos, 2001; Factor, Perry, & Freeman,

1990; Gray, 1994) and it is generally acknowledged

that appropriate short breaks can help prevent family

breakdown (Abelson, 1999; Boyd, 2002). The litera-

ture is too extensive to review fully in a paper of this

length; however, Chan and Sigafoos (2000, 2001)

comprehensively review research undertaken in this

field.

The literature suggests that short breaks tend to be

used more by families with limited informal support

networks than by those who have greater support

from family and friends (Boyd, 2002; Chan & Sigaf-

oos, 2000; Cohen, 1982: Factor et al., 1990; Randall &

Parker, 1999); and that families who use (or wish to

use) short breaks have children who are more

dependent or have more serious behavioural issues

than non-users (Boyd, 2002; Chadwick, Beecham,

Piroth, Bernard, & Taylor, 2002; Factor et al., 1990;

Marc & MacDonald, 1988; McConkey & Adams,

2000; Trenenan, Corkery, Dowdney, & Hammond,

1997).

However, there is also evidence that access to

services can be problematic for families of children

with ASD. Sargent (1995) and Barson (1998) report

that families with children with ASD often spend

years on waiting lists without receiving a service; a

recent study by Tarleton and Macaulay (2003) sug-

gests almost a third of children on waiting lists for

short breaks in the UK have ASD. When individuals

D. Preece Æ R. Jordan (&)School of Education, University of Birmingham, Edgbaston,Birmingham B15 2TT, UKe-mail: [email protected]

J Autism Dev Disord (2007) 37:374–385

DOI 10.1007/s10803-006-0174-2

123

BRIEF REPORT

Short Breaks Services for Children with Autistic SpectrumDisorders: Factors Associated with Service Use and Non-use

David Preece Æ Rita Jordan

Published online: 1 August 2006� Springer Science+Business Media, Inc. 2006

with ASD access services, they often are subse-

quently excluded from them due to the impact of

their behaviours on others (Van Bourgondien &

Elgar, 1990). Able children with ASD—such as those

with Asperger Syndrome (AS) may be viewed as too

able to meet eligibility criteria (Oberheim, 1996).

Finally, the literature suggests that there are not

enough short breaks services available to families

with children with ASD in the UK. Barson (1998),

surveying residential short breaks services in Wales,

found that only 7% of families were able to access

such services and Brady (1998) states that 55% of

families of children with ASD consider lack of short

breaks as problematic.

Aim of the Present Study

The literature on short breaks and ASD presents no

clear conclusions and many studies have had small or

potentially unrepresentative samples. For example,

Factor et al. (1990) surveyed only 36 two-parent fam-

ilies; Barson (1998) surveyed just 53 families—all

National Autistic Society members—to report on the

situation across Wales; Tarleton and Macaulay’s UK-

wide study (2002) had a 15% response rate.

This current study sought to obtain as close to a

whole (geographically defined) population of families

with children with ASD as possible, identifying why

some families accessed short breaks services and others

did not. Two hypotheses were derived from the liter-

ature. First, that families using short breaks would have

fewer informal social supports than non-users; and

second, that children of users would exhibit higher

dependence/need and require greater support/super-

vision than those of non-users.

The population comprised all families with children

with ASD appearing on one rural English county’s

register of disabled children (n = 278). Cross-refer-

encing identified that this comprised 80+% of families

with children with ASD. This county provided a range

of short breaks and other support services, including

residential and family-based services, play activities

and individual support.

Method

Survey Instrument

Data were collected via a self-completion postal

survey. The data collection tools and methods of

measurement were intentionally developed and de-

signed with the participation of a group of parents with

children with ASD from a neighbouring county, to

ensure ecological validity, and in accordance with the

ethical research stance, derived from critical theory,

where the ‘researched’ have a voice in the nature of the

research.

To compare dependence levels, Robinson and

Stalker’s Ten Point Dependence Scale (1990) was used.

This tool enabled parents to identify their child’s level

of dependence upon adults across ten areas of every-

day living: washing, dressing, toileting, eating/drinking,

managing behaviour, occupying self, getting around,

communication, need for supervision and sleeping. It

had previously been used to compare dependence in

one of the few large-scale surveys of short breaks use

(Robinson & Stalker, 1990, 1991; Stalker & Robinson,

1991), and its use was supported by the parent group as

representing ecologically valid categories.

Procedure

Two hundred and seventy-eight questionnaires

(Appendix 1) were posted out. In 22 cases, the family

had left the county, the child was now an adult, or the

diagnosis had been incorrectly recorded. Thus the true

population of families with a child with ASD was 256.

Questionnaires were returned anonymously to the

researcher. One hundred and fifty-five families replied,

a response rate of 60.5%.

Description of Sample

The questionnaires returned and the register database

were compared to ascertain the representativeness of

the sample (Table 1). The sample was identified as

being generally representative, and the sample of 155

from a population of 256 gave an accuracy of ±5% at

5% significance (Malec, 1993).

Results

Examination against Hypotheses

Hypothesis 1—Informal Social Support

The first hypothesis suggested non-users of short

breaks services would have more informal social sup-

port than users. Potential sources included spouses/

partners, parents, children, other relatives, neighbours

J Autism Dev Disord (2007) 37:374–385 375

123

and friends. This hypothesis was not supported by the

data. The results showed that non-users had on average

2.0 sources of informal social support, compared with

1.8 sources available to users of short breaks and v2

analysis identified that this difference was not signifi-

cant (P-value = .70).

The most frequent source of support was the main

carer’s spouse/partner (80%), followed by grandpar-

ents (39%) and other children (36%). Support beyond

the immediate family was available to less than 20% of

the sample, with little available from friends (15.5%)

or neighbours (4.5%).

Hypothesis 2—Child’s Level of Dependence

The second hypothesis tested was that users of short

breaks would have a higher level of dependence than

non-users. This hypothesis was supported, as the chil-

dren of users of short breaks were reported as being,

on average, dependent in 8.2 of the areas measured on

the Ten Point Dependence Scale, compared to 6.9

areas for the children of non-users. This was shown by

v2 analysis to be significant (P-value = .05). Full details

are shown in Table 2.

Level of High Dependence within Users

and Non-users

The children of non-users of short breaks had lower

overall levels of dependence. However, many non-

users still had children with significant levels of

dependence (7+ areas). Although the number of highly

dependent children was lower in the non-users group

(n = 71, 62.3%) than the users group (n = 34, 82.9%),

a large number of families who did not access services

had highly dependent children.

Comparison between Short Breaks Users and

Non-users with a Current Need for Short Breaks

Forty-nine of the 114 families that did not access short

breaks (43%) expressed a current need for them.

Analysis of the data showed the mean level of chil-

dren’s dependence within this group to be 7.7, mark-

edly higher than that among non-users as a whole (6.9).

The presence of this high level of dependence, plus the

desire to use short breaks, made it surprising that they

were not receiving this service. To identify factors that

might militate against accessing short breaks services,

the data for users of short breaks (n = 41) and non-

users who expressed a current need (n = 49) were

compared using v2 analysis. This analysis is shown in

Table 3.

Four factors were significantly associated with

whether families received short breaks. These were (1)

whether the family has a social worker, (2) the type of

school attended by the child, (3) the child’s age, and (4)

the child’s diagnosis.

Factors Associated with the Use or Non-use of

Short Breaks

Social Worker

Most families accessing short breaks had an allocated

social worker. Over 40% of non-users who wished to

access short breaks did not have a social worker;

Table 1 Comparisonbetween respondents andwhole population on register

Respondents(n = 155)

Population (n = 256)

No. % No. %

No. of support services used 72 46.4 121 47.3Short breaks used 41 26.4 67 26.2Child detailsMale 124 80 202 78.9Female 31 20 54 21.1Under 11 years 59 38.1 114 44.511 and over 96 61.9 142 55.5Mainstream education 52 33.6 100 39.1Special education 70 45.2 115 44.9

Table 2 Comparative levels of dependence (10 point scale)

n Mean

Whole sample 155 7.4Users of short breaks services 41 8.2Non-users of short breaks services 114 6.9

376 J Autism Dev Disord (2007) 37:374–385

123

nonetheless, almost 60% of would-be users did have

one. This suggests other factors may be more strongly

associated with use/non-use.

School Placement

Children receiving short breaks predominantly came

from within the special school population (n = 29,

70.7%); only 3 children (7.3%) were in mainstream

education. By contrast, 36.7% of would-be users’

children were in mainstream settings. Education in

mainstream settings impacts negatively on short

breaks’ use.

The Child’s Age

Examination of the data concerning age showed that

almost 60% of children attending short breaks services

were 11 or over; in contrast, only 26.6% of would-be

users’ children were over 11. The mean age of short

breaks users’ children was 11 years 7 months, com-

pared with 9 years 5 months in the would-be users

group. Age of the child is a factor affecting short

breaks’ use.

The Child’s Diagnosis

Children with a diagnosis of ASD were the majority in

both the users group (63.4%) and the would-be users

(55.1%). However, almost all of the remainder of the

users group (34.2%) comprised children who had se-

vere learning disabilities (SLD: Mental Retardation in

the USA) in conjunction with a diagnosis of ASD or

‘autistic tendencies’. Only 1 child receiving short

breaks had a diagnosis of AS; in contrast, 34% of

would-be users’ children were diagnosed with AS. The

child’s diagnosis seems strongly associated with short

breaks use/non-use.

Discussion

The hypothesis that non-users of short breaks have

more informal social support than short breaks’ users

was not supported. In this study, the difference be-

tween the mean levels of informal support available to

both groups was insignificant. Both groups received

little informal support, rarely extending beyond the

immediate family. This highlights the level of social

isolation that can result due to the presence of ASD in

the family (Gray, 1994).

The hypothesis that the children of short breaks’

users would exhibit higher levels of dependence upon

adults than those of non-users, was supported.

Other factors were identified which are associated

with use or non-use of short breaks. These were

allocation to a social worker, the children’s educa-

tional placement, their age, and their diagnosis. To

summarise the situation, this research suggests that

parents who feel they need short breaks are more

likely to receive this support if they have a social

worker, if their child is in a special educational set-

ting, over 11 years of age and has a diagnosis of

ASD (possibly with SLD). By contrast, parents seem

less likely to receive such support if they do not have

a social worker, their child is in a mainstream edu-

cational setting, aged under 11, and/or diagnosed

with AS.

This suggests the situation regarding the use of short

breaks by families with children with ASD is complex,

and that many variables may be associated with short

breaks’ use or non-use. Further study into the rela-

tionship between these variables is required.

It is acknowledged that though the results obtained

in this study are representative for this county,

assumptions cannot be made about their generalis-

ability outside of that population. The research was

undertaken within a rural area, with little urbanisa-

tion, and a low minority ethnic community popula-

tion. Moreover, ASD-specific services had been

developed there for over a decade. Generalisation,

even to other local authorities within the UK, where

the same legislative framework governs the provision

of services, may therefore be difficult. Further studies

need to be carried out to ascertain whether the con-

clusions drawn from this research hold for other di-

verse populations.

Table 3 Comparison of users of short breaks and non-users whowished to access services

Factor underconsideration

P-value

Number of adults in household .90Father working .90Mother working .995Number of children in household .995Sex of child .90Social work team area .20Does the family have a social worker? .02*School placement .005**Age of child with ASD (under/over 11) .005**Diagnosis .001***

* = levels of significance


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Appendix

APPENDIX

FINAL COPY OF QUESTIONNAIRE USED IN SURVEY

QUESTIONNAIRE FOR PARENTS OF CHILDREN AND YOUNG PEOPLE WITH AUTISTIC SPECTRUM DISORDER

Please answer all questions as fully as possible. Your answers are confidential to yourself and the research worker. If you have more than one child with autistic spectrum disorder, please complete a questionnaire for each child: you can get another questionnaire from [address here].

Section 1: Your Family

1. Child’s date of birth:……………………..

2. Child’s sex: Male Female (please delete as necessary)

3. Child’s diagnosis:………………………………..

4. School attended:……………………………………………………….

5. Please can you say what your ethnic origins are by ticking the appropriate boxes below. (We need to know this information in order to find out how acceptable respite care services are to people from minority ethnic groups).

Child’s mother Child’s father Black, Afro-Caribbean origin Black, African origin Black, Asian origin Black, Other (please specify) White, European origin White, Other (please specify)

6. Members of your household

Please fill in the table below, allowing one line for every person who lives in your house.

Person No.

Relationship to child Age Occupation Full/part-time

1 2 3 4 5 6


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7 8 9 10 7. Please can you say if your child needs help in the following areas. Please tick the appropriate boxes and describe the help s/he needs.

Yes No Describe help needed Washing

Dressing

Toileting

Eating and drinking (including dietary issues)

Managing his/her behaviour

Occupying self

Getting around / going out and about

Communicating

Does s/he need constant supervision? Does s/he have sleep difficulties?

8. What is your child’s behaviour like most of the time? Please describe.

………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………


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…………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………… 9. Do any of the following people help to look after your child? Please tick as many boxes as necessary.

Your partner Neighbours

Your other child(ren) Friends

The child’s grandparents

Other relatives If other, please give details

Other people

10. Is this a satisfactory arrangement for you? Please tick

Yes No

11. Does your child stay away from home overnight without you? Please tick.

FrequentlySometimes Rarely/never

12. If so, where does your child usually stay? (e.g. with relatives, respite care service, school trips) ………………………………………………………………………………………… ………………………………………………………………………………………… ………………………………………………………………………………………..

Section 2. Short break (respite care) services

13. Do you currently have a social worker? Please tick.

Yes No

14. Has anyone ever suggested that you might use ‘respite care’ services? Please tick.

Yes No

15. If yes, what person (e.g. another parent, teacher, social worker, etc)


123

…………………………………………………………………………………………. ………………………………………………………………………………………….

16. Where would you go to find out more about ‘respite care’ services? ………………………………………………………………………………………….. ………………………………………………………………………………………….. …………………………………………………………………………………………..

17. Do you feel the need for ‘respite care’ at the moment?

Mother Father Yes Yes No No

18. Which, if any, ‘respite care’ services are you using at present. Please tick as many boxes as necessary.

A residential home Weekly Termly

A residential (boarding) school

Other A family-based scheme A sitting service A childminder Domiciliary care (home help) Play group Holiday playschemes Sessional worker/befriending Other (please say what)

None at all

19. If you are not using any ‘respite care’ services, please say why not. Give as many reasons as you wish. ……………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………


123

……………………………………………………………………………………………………………………………………………………………………………………

20. Which, if any, ‘respite care’ services have you used in the past. Please tick as many boxes as necessary.

A residential home Weekly Termly

A residential (boarding) school

Other A family-based scheme A sitting service A childminder Domiciliary care (home help) Play group Holiday playschemes Sessional worker/befriending Other (please say what)

None at all

21. If you have used a ‘respite care’ service in the past, please say why you are no longer doing so? …………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………

Section 3: Future Needs

22. Do you think you may need ‘respite care’ in the foreseeable future? Please tick.

Yes No

23. If yes, how much help do you expect to need in the next 12 months? Please indicate both how often and how long you would prefer the breaks to be (e.g. one evening per fortnight, one weekend a month, etc). ……………………………………………………………………………………………………………………………………………………………………………………


123

……………………………………………………………………………………………………………………………………………………………………………………..

24. What, if any, benefits do you think your family might gain from using ‘respite care’ services? ……………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………

Section 4: General Attitude to ‘Respite Care’

25. Please tick the box which most closely reflects your view on each of the following statements.

Strongly agree

Agree Not sure Disagree Strongly disagree

Using respite care services emphasises the difference between disabled children and others Respite care can prevent children being received into long-term care Parents should alwaysbe responsible for looking after their own children Respite care can improve a child’s skills and abilities Respite care is only useful if it includes overnight breaks There is not enough information available about respite care services The needs of children with autistic spectrum disorder can be met within general respite services


123

26. If there is anything you wish to add, please do so below. …………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………….

27. The researcher is hoping to follow up this survey by conducting a number of interviews about ‘respite care’ with parents of children with autistic spectrum disorders and with brothers and sisters. If you or your children would be willing to take part in this next stage of the research, please indicate below and fill in the contact details.

Yes No I/we would be willing to be interviewed My/our child(ren) are willing to be interviewed, and I/we give consent for this

Age of child with autistic spectrum disorder, if to be interviewed……………… Child’s verbal ability………………………………………………………………..

Number of brothers and sisters willing to be interviewed (if applicable)…………..

Age(s)……………

Contact name…………………………………………………………………… Address………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………… Telephone number…………………………………………………………….

Thank you very much for taking the time to complete this questionnaire. Please return it in the stamped/addressed envelope provided to:

[1st author’s name & address here]


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