Abstract
The Indian Institute of Cerebral Palsy, Calcutta, runs a centre for families with children with cerebral palsy at Salt Lake, on the outskirts of Calcutta. Demand for the centre's services is too great for it to run as a school, so parents are offered the choice between a high participation parent involvement project and a lower intensity out patients service. This paper reports on a two year evaluation of the two services conducted by the author and Swapna Mukherjee, the teacher running the service. In line with the project's philosophy, parents were seen as partners in the research process. Their views on the services and research findings have been incorporated into this paper. The evaluation was undertaken from three perspectives: participating parents' views on the extent to which the service met their needs and those of their child, impact on participating parents' knowledge, attitudes and adjustment, and impact on participating child's development. Aspects of the first two of these perspectives will be reported here. This will include an analysis of the suitability of the two services offered, as judged by parents with differing income levels and years in education, along with any changes in parents' knowledge and adjustment over the two years.
Introduction
Here, in the West, studies of family involvement in education and therapy for children with developmental disabilities tend to focus on children under 5 or 6 years of age (e.g. Carpenter, 1997). After this, it is assumed, rightly or wrongly, that the child will be in the education system until around the age of 19 and parents' participation in those intervening 14 years will have reduced to a supportive level. In India, as in many countries of the South, however, the availability of places in mainstream or special education for children with significant disabilities is not sufficient to meet demand (e.g. Kalyanpur, 1996; Miles, 1998). As a result, a significant proportion of families continue to have high levels of participation in and responsibility for their child's development (Srinivasan and Karlan, 1997). Indeed, parental participation in intervention for children with a diversity of special educational needs is specifically encouraged by many Indian researchers (e.g., Kalyanpur, 1996; Narayan, et al., 1993; Peshawaria et al., 1995; Russell et al., 1999).
There are many models of parent involvement currently in use in India. Peshawaria and Menon (1991) describe those used at India's National Institute for the Mentally Handicapped; the Institute-based individual model, Institute-based group model, family cottages, group parent training programmes and parent self-help groups. This range of approaches represents a commitment to meet the needs of a diversity of families, in terms of such factors as families' proximity to the Institute, their time available for participation and the availability of other services in their locality. It might also be seen as a response to the range of issues for which a given family wants or needs support.
The Indian Institute of Cerebral Palsy, Calcutta (IICP), also runs a wide range of services for families. In attempting to address the needs of the great diversity of families in urban and rural West Bengal, this organisation has developed both centre-based and community-based services for adults and children (Crishna, 1998; IICP, 1999).
One of their well-established services is an outreach centre for families with children with cerebral palsy at Salt Lake, on the outskirts of Calcutta. Demand for the centre's services is too great, in terms of available staff, for it to run as a school, so two levels of service are offered; a fortnightly outpatients service (OPD) and a three session per week Parent Involvement service (PIP). All families start by attending the outpatients service, but after the child's assessment, they can remain in that service or choose, at some point subsequently, to transfer to the Parent Involvement Project, with its higher demands on parent participation.
Salt Lake and its surrounding area reflect the spread from traditional, through transitional to industrial communities, described by Srinivasan and Karlan (1997). Some of its families are affluent, with adults commuting to professional or managerial posts in Calcutta itself and monthly incomes in excess of £400 (sterling). But the centre's catchment area also includes the area described in Pal and Chaudhury's (1998) study, where lower income groups with low levels of education predominate and typical family incomes were around £20 (sterling) a month. Pal and Chaudhury (1998) argue forcefully that where such contextual disparities exist there is a need for alternative intervention approaches. They state, further (p.316), that "In a situation where women have few independent social or economic choices, it becomes difficult for them to take the initiative or responsibility for special learning programmes". Pal and Chaudhury recommended that services for families with children with disabilities in such settings should provide a two-part intervention:
Their recommended focus is on the parents, with benefits for the children occurring only indirectly.
PIP and OPD
Despite Pal and Chaudhury's concerns for parents in lower income groups, all parents attending OPD or PIP are expected to take responsibility for implementing the programmes developed for their children. In OPD parents attend an individual appointment once every two weeks. Between consultations they are expected, on a regular basis, to carry out at home exercises taught by the project's physiotherapist, and self-help programmes devised by the teachers.
In PIP, parents attend sessions of 1.5 to 2.5 hours, three times a week at the Salt Lake centre. In these sessions, parents take on responsibility for working with each others' children on programmes devised by staff, in discussion with parents, for cognition and other aspects of education, communication and self-help skills, as well as carrying out physiotherapy exercises. To help them do this, they receive workshops on a range of topics from the project's teachers, physiotherapist and social worker. At the time this study was carried out, the two services had been running for several years. It seemed appropriate to evaluate their effectiveness from a number of different perspectives. The issues of interest in this paper are the extent to which the two groups (OPD and PIP) do, in fact, serve different types of family and, if so, whether each service meets the needs and aspirations of the participating families. Specifically, we will be asking the following four questions:
Method
The participants were 56 parents or primary carers of children with cerebral palsy who accompanied the child to one of two the services described above. All parents attended on a voluntary basis. 31 attended PIP, of whom ten had transferred from OPD within the past year and are identified for this study as the NEW sub-group, and 25 attend OPD. 51 of the participants were the child's mother, three were the child's father, and the remaining two were an aunt and an older sister. In these two cases, this was the child's primary caregiver. Other details are given in Table 1a and b.
Background data on monthly family income and parents' or carers' education level were available from existing files. However, the second author and the other project teacher suggest that the most affluent families may well have under-reported their monthly incomes, out of courtesy to the teachers who earn substantially less! A questionnaire was devised to elicit parents' views of the service they attended. The items were drawn from discussion with parents and from awareness of the issues that parents raised with staff and discussed amongst themselves. Topics covered included length and frequency of sessions, the facilities and resources available, contact with staff, the importance of different aspects of development and parents' views on the best and worst aspects of the service they attended.
All measures were completed independently by the majority of parents, but by interview with the second author if they experienced difficulties reading or writing Bengali.
Results
Demographic factors
Incomes of parents in the project span the range expected in the surrounding area. However, there is a significant difference between the monthly incomes of the PIP and OPD groups (t=2.658, d.f.=53, p<0.02). The NEW sub-group have higher incomes than families remaining in OPD (t=3.02, d.f.=33, p<0.01. However, there is no difference between the incomes of the OLD sub-group and the NEW sub-group (t=0.423, d.f.=28) (see Table 1b).
The PIP group parents have spent significantly longer in education than the OPD parents (t=5.93, d.f.=52, p,0.001). This particularly true of the NEW sub-group, all of whom have attended university (see Table 1b). PIP parents have a significantly shorter journey time to the centre than the OPD parents (t=3.829, d.f.=53, p<0.001). As with income, NEW families (i.e. the most recent transfers from OPD to PIP) were found to have significantly shorter journey times than families remaining in OPD (t=2.727, d.f.=32, significant at 0.02 level). However, there is no significant difference between the journey times of OLD (i.e. existing PIP) families and NEW families (t=1.175, d.f.=29) (see Table 2).
Children in PIP are significantly older than those in OPD (t=2.365, d.f.=54, p<0.02). However, this time there is no significant difference between the ages of the NEW and OPD sub-groups (t=0.320, d.f.=32, non significant) (see Table 1a). This suggests that age does not have an effect on take-up of a place in PIP, rather, that families are staying longer in PIP than in OPD. (t=3.106, d.f.=43, p=0.003) (see Table 2).
Parent's opinions on frequency and duration sessions
In this section the NEW PIP parents will be considered together with the OLD PIP parents, as they are attending the same service. PIP sessions are currently 1.5-2.5 hours, but 81% of all PIP parents (25/31) want them to be 3 or more hours. 5 parents (or 16%) are content with 2 hours, and one parent (or 3%) would like them reduced to 1 hour. (See Table 2)
OPD consultations last approximately half an hour to an hour. 6% (or 13 of the 21) of OPD parents are content with current times. The remaining parents want longer consultations, 7 (or 33%) want 90 minutes and 1 wants 2 hours. (See Table 2) There is, therefore, a highly significant difference between OPD and PIP parents in the length of session they wish to attend (t=10.601, d.f.=50, p<0.0001).
Currently parents attend PIP 3 days per week. Ideally, these parents would like to attend more often (mean = 4.32, s.d.=1.08) but acknowledge that it is practical for them to attend a little less than that (mean = 3.58, s.d.=1.23). (See Table 3)
Currently OPD parents attend fortnightly. All bar two parents would like to increase this to between once and four times a week (mean = 2.26). However, they report that it is practical for them to attend significantly less often, on average only once a week (mean = 1.04). (t=6.146, d.f.=20, p<0.0001). (See Table 3)
As with session length, the differences between parents attending OPD and those attending PIP are highly significant. (For preferred number of days a week t=8.218, d.f.=50, p<0.0001. For the number of days it is practical for them to attend t=4.988, d.f.=50, p<0.0001).
Parent's opinions on contact with other parent's
Contact with other parents was valued by the great majority of PIP parents. 12/31 (38.7%) rated it as "one of the most important things about PIP" and a further 18 (58.1%) rated it as "important". Only one parent rated this aspect of the service as "not particularly important." (See Table 4)
Perhaps surprisingly, 5/20 (25%) of parents attending OPD also found contact with other parents "one of the most important" aspects of OPD, and a further 12/20 (60%) found it "important". Of the remaining 3, 1 found it "not particularly important" and 2 "unimportant". (See Table 4)
Parents' views on the "best thing" and "worst thing" about the service
Parent were asked to specify "the best thing" and "the worst thing" about PIP or OPD. Parents' verbatim accounts (54 comments from 31 parents) of what they liked best about PIP varied (see Table 5a-f). Whilst it is difficult to categorise reliably, a post hoc analysis suggests that the parents who have attended PIP for over a year (the OLD group), see the benefit to themselves as equally important to the gains for the child.. Whereas the NEW parents saw the advantages of participation far more in terms of the children than themselves. This pattern is more like that of the OPD parents, the service they attended until recently.
Within these gross categories, the "best things" relating to children in PIP involved the child gaining social opportunities, making progress, gaining opportunities to learn or study (8) and the child feeling good about themselves or more independent. In relation to parents, learning about their children and how to work with them was particularly important, though emotional support from other parents was significant for several. Parents also valued working with other children, the social opportunity, and learning from other parents' experience.
For parents attending OPD, social aspects were rarely mentioned. Half felt that the "best thing" was that their child had improved. The other comments referred mainly to physiotherapy and education, training for parents and the impact of the project on the parent's psychological state.
Most parents (22/ 31) could identify no "worst thing" about PIP (See Table 6). The issues identified by the others were the very significant problem of transport for two parents who travelled a long way and the need for parents to be there at all times (3) which was felt to prevent the children becoming more independent. One parent found the time demands very difficult for working parents, one was concerned that her child imitated the bad behaviour of others, one felt there was not enough time and one felt missing a day disrupted the child's routine. A similar pattern emerged from parents attending OPD (See Table 6b). Most could identify no "worst thing". Some found the travelling very difficult and one was depressed by the realisation that her child will never be "normal".
Discussion
The findings on income suggest that families with higher incomes are more likely to be in the higher intensity (PIP) service. This suggestion is supported by the finding that the most recent transfers from OPD (the NEW sub-group) have higher incomes than those remaining in OPD, but similar to those already in PIP (the OLD sub-group). This is unsurprising, as families with incomes at subsistence level are unlikely to be able to spare a family member to accompany a child to the Centre three times a week. It is a tribute to the commitment of these families that they attend fortnightly consultations. Parents with a greater number of years in education are more likely to attend PIP. Again, this is not surprising as income and education level are highly correlated.
Differences in journey time between PIP and OPD groups suggest that this is an significant factor in take-up of higher frequency intervention. It must be noted, however, that the data are confounded by the probability that the more affluent families (those in PIP) have the financial resources to make their journey faster or, at least, more comfortable. One implication of this might be that services, particularly for poorer families, need to be delivered at a local community level, or that the provision of free or low cost transport might enable poorer families to take up the higher intensity service. Retention, i.e. length of participation, is greater in PIP, but it may be income level and therefore time available that permits this.
It seems possible, from the number of parents wanting a markedly longer session in PIP together with an increase in frequency of attendance, that some parents would prefer a service more like a school than one which involves so much parent participation. This is counter-balanced by the obvious value that parents place on contact with other parents, and this is an area that merits further investigation. Data from OPD parents suggests that there would be scope for offering a weekly, rather than fortnightly service. However, a less frequent, fortnightly or even monthly service would need to be maintained for parents unable to attend weekly.
Contact with, and mutual support among, parents was planned to be a significant feature of the Parent Involvement Project. This includes regular participation within a group, collaborative activities, with and without the children, and time for parent to parent discussion. It is, therefore, reassuring that contact with other parents is felt to be valuable by the great majority of PIP parents. It is not surprising that OPD parents are slightly less positive as they have less time as a group and any parent to parent contact is informal rather than a planned part of the service. However, it is clear that many parents do value even this limited contact. This suggests that OPD parents might welcome some kind of parents group, or other opportunity to extend their contact amongst themselves.
In conclusion, there are differences between PIP and OPD parents which suggest that the two services are meeting the needs of differing groups of parents. However, if attendance at a more intensive service was deemed valuable for all families, it is clear that financial and transport issued would need to be addressed. It is also apparent that parent to parent contact is an important part of both services. This suggests that parents who are unable to attend the more frequent service might still welcome some form of parents' support group. We have argued the value of support groups for other family members in a previous paper (Goldbart and Mukherjee, 1999).
Whilst this study concerned families of children with cerebral palsy, rather epilepsy (as in than Pal and Chaudhury's, 1998, study) it is particularly reassuring that the services available through OPD, with its demands on parents for home-based intervention, are acceptable even to parents with very limited resources. It is clear that, with appropriate input from teachers, physiotherapist and social worker, parents across the income and educational spectrum can work effectively in partnership with professionals for the benefit of their children.
Table 1a: Characteristics of project children and their families
| No. of participants | Gender of children | Age of children | |
| Existing P.I group (OLD) |
21 | female: 4 male:17 |
means 7y7m s.d: 46m |
| Newly transferred group (New) |
10 | female:3 male: 7 |
mean: 4y 2m s.d: 31m |
| Total P.I group (PIP) (OLD AND NEW) |
31 | female: 7 male: 24 |
mean: 6y 6m s.d: 46m |
| OUT GROUP PATEINTS GROUP (OPD) |
25 | female:7 male:18 |
mean: 4y 5m s.d: 25m |
| Total Group | 56 | female: 14 male: 42 |
mean: 5y 7m s.d: 40m |
Table 1b: characteristics of project families
| Relationship to child | Monthly income in rupees | Parent's Education | |
| Existing P.I group (OLD) |
mother: 20 father: 1 aunt/sister: 0 |
mean: 668rps s.d. 544rps |
nil to classV:0 class VI to IX: 1 class x to xii: 4 univeristy: 16 missing data: 1 |
| Newly transferred group (NEW) |
mother: 9 father: 1 aunt/sister: 0 |
mean: 5810rps s.d: 2247rps |
nil to class V:0 class VI to IX:0 class X to XII: 0 university: 9 |
| Total P.I group (PIP) (Old and New) |
mother: 29 father: 2 aunt/sister: 0 |
mean: 6403rps rps: 4632 |
nil to class V: 0 class VI to IX: 1 class X to XII: 4 university: 25 missing data: 1 |
| Out patients group (OPD) |
mother: 22 father: 1 aunt/sister: 2 |
mean: 2774rps s.d: 2447rps |
nil to class V: 7 class VI to IX: 5 class x to XII: 7 university: 5 missing data: 1 |
| Total group | mother: 51 father: 3 aunt/sister: 2 |
mean: 4783rps s.d. 4199rps |
nil to class V: 7 class VI to IX: 6 class - xii: 11 university: 30 missing data: 2 |
Table 2: Parents' Mean Preferred Session Lenghts at PIP and OPD
| 2a | 1hour | 2 hours | 3+ hours |
| PIP (N=31) | 1 (3%) | 5 (16%) | 25 (81%) |
| 2b | up to 6o minutes | 90 minutes | 120 minutes |
| OPD (n=21) | 13 (62%) | 7 (33%) | 1 (5%) |
Table 3: Parent' Mean Desired and Deasible Requency of Attendance at PIP or OPD
| Desired frequency | Feasible Frequncy | |
| PIP | 4.32 | 3.58 |
| OPD | 2.26 | 1.04 |
Table 4: Rating of the importance of contat with other parents
| PIP | OPD | |
| One of the most imporatant things | 39% | 25% |
| Important | 58% | 60% |
| Not particularly important | 3% | 5% |
| Unimportant | 0% | 10% |
| Undesirable | 0% | 0% |
Table 5a: 'Best thing about PIP' statements referring to parents, OLD group
Table 5b: 'Best thing about PIP' statements referring to children only, OLD group
Table 5c: 'Best thing about PIP' statements referring to parnts, NEW group
Table 5d: 'Best thing about PIP' statements referring to children only, NEW group
Table 5e: 'Best thing about PIP' statements referring to parents, NEW group
Table 5f: Best thing about OPD statements referring to children only
Table 6a: 'Worst thing' about PIP
Table 6a: "Worst thing" about PIP "
No bad side" (22)
********
Table 6b: "Worst thing" about OPD "
No bad side" (13)
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