DE LAS CONTROVERSIAS ENTRE LOS CONDÓMINOS

The first services to participate were the children’s social services and adult learning disabilities teams in Bristol, South Gloucestershire and North Somerset. The

researcher had contacts in these areas of the country, which made it possible to

effectively network with all the relevant professionals who were working with parents with learning disabilities at that time. In total, seven participants took part from this geographical area.

Further networking identified a service for parents with learning disabilities in Exeter, Devon. However, the majority of families in this service had children under the age of five years old or were registered with child protection agencies, which excluded them from the study. Nonetheless, three potential participants were identified. One of these families took part in the project.

Two families were identified from the child learning disability team in Bath, Somerset and both agreed to participate. Again, several more children were known to this service, but were monitored under child protection and were therefore excluded from the study.

Six families met the research inclusion criteria at the parenting service for people with learning disabilities in North Tyneside. However, only one of these families agreed to actually take part. As above, other families were known to this team, but the children were monitored under child protection plans, and so were excluded from

participation.

Participants were identified at the Special Parenting Service in Cornwall. This agency was established in 1988 and therefore has long-standing relationships with parents in the area. Eleven mothers and children took part from right across the county – from Penzance, Redruth, Truro, Falmouth, Hayle, Camborne, Pool, St Austell and

Tresillian.

Interestingly, this Cornwall service was working with the largest number of children who were not registered with child protection agencies.

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The Elfrieda Society in London works with a large group of parents with learning disabilities. The researcher had several telephone conversations with the manager of this service to discuss the study and invite members of the group to participate. This contact led the researcher to believe that there were ten people who would have met this study’s criteria. However, these mothers refused to take part and even declined several offers simply for the researcher to go and talk to them.

In south London, a charity named Generate offers services to parents with learning disabilities. They invited the researcher to go and meet with them to explain the study and hand out leaflets. There were three mothers and their children who met the research criteria; one agreed to participate in the study.

Finally, one participant was identified from a parenting service in the Midlands, run by a charity called Options for Life. This mother and daughter took part in the study. In total, forty-three families were identified who met the research criteria and twenty- four gave consent to take part in the project. Across the country, it seemed that parents’ reluctance to participate in this research was a genuine fear of professional assessment, despite the researcher’s repeated assurance that the research data was confidential. This was particularly the case with the Elfreida Society in London, who would not even consider discussing the project with the researcher. Quite possibly this reflected parents’ general mistrust of professionals. Indeed, this issue is highlighted in the literature; a parents’ fear of having their children removed has been shown to prevent them from cooperating freely with services and professionals (Booth, 2000;

Best Practice Guidance on Working with a Parent with a Learning Disability:

Department of Health, 2007).

Summary

In conclusion, networking proved successful. Areas of the country where the researcher had personal contacts, such as Cornwall and Bristol, yielded the largest numbers of participants. It was disappointing to note that there were forty-three

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families that could potentially have taken part, but to have secured participation from twenty-four was more than half of the identified population.

This country-wide survey indicated that the majority of children known to services were under the age of five years old. This raised questions as to the whereabouts of older children. Knowing that approximately 50% are routinely removed into care (Booth et al., 2005), the researcher was left unsure whether this survey did indeed indicate that, past the age of five years old, these children were more likely to be removed. Alternatively, of course, it may be that mothers with older children were simply no longer in need of services and were therefore not identified by this study. Age aside, it appeared that a significant majority of children were registered with child protection agencies. This either suggested mass parenting failure on the part of people with learning disabilities or that the presence of a learning disability was in itself being considered a substantial enough risk factor, resulting in children being monitored under child protection.

However, the opposite was true in Cornwall. The Special Parenting Service in Truro had the largest population of parents with learning disabilities known to them, whose children were not being monitored under child protection plans. It seemed likely that this was due to the nature of this service, as parents in this location receive long-term support, increasing the likelihood of successful outcomes.

The next section details the procedure that was followed, to administer the research measures.

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3.9 Procedure

All potential participants were identified through networking, telephoning contacts and cold calling relevant agencies.

Once local NHS Trust approval was granted for each geographical area in which participants lived, the researcher again contacted those services that had agreed to take part in the research.

The team manager was asked to approach the identified mothers and their children and to make initial enquiries as to whether they would like participate. The manager was given the information leaflets describing the study and was asked to give them to the mothers and children.

Where initial agreement and consent/assent was given to the manager by the 16-17 year olds or (in the case of younger children) by both mother and child, the contact details for those individuals were passed to the researcher.

Subsequently, the researcher requested some basic information about the family, such as how many children were in the family and whether there was a husband or partner in the home.

The researcher then arranged an initial meeting with the family and explained the purpose of the study. Mothers and children were encouraged to ask questions about the research. The researcher explained to children that the study was being carried out with them because their mother had a learning disability.

Sometimes this initial meeting was also attended by another trusted family member or friend who was given the role of asking questions about the project. On a few

occasions, the mother requested that the manager of the service (who had made initial contact with them about the research) also be present.

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Mothers and children were given the research information leaflets again and the study was explained in detail. Any worries were discussed, such as whether information given to the researcher would be confidential. At the end of the meeting the researcher invited mother and child to take part in the study.

Written consent (for mothers and young people 16-17 years old) and child assent (for children 8-15 years old) to participation in the research was recorded.

A second meeting was then arranged with mothers and children to allow the researcher to assess IQ and adaptive functioning. These two measures took approximately half an hour to complete.

A third meeting took place for the perception of stigma, self-esteem, attachment and social support questionnaires to be completed with the children. These four measures took a total approximate time of thirty-five minutes to complete.

Children were interviewed in their own homes to avoid as much disruption to their daily lives as possible. However, they were given the option of using an NHS facility or being seen at their school if they felt happier doing this. Three children in the study asked to be seen at their school, as they felt better able to concentrate in that environment.

Several of the mothers proved difficult to actually interview. Rather than this indicating reluctance to participate, it was always the case that the mother had

forgotten the appointment. Even letters that were sent to back up arrangements made on the telephone did not help, due to reading and writing difficulties.

Sometimes the researcher had to return to a participant’s house three or four times before they were able to actually meet.

It was notable that all the children who participated in the research enjoyed doing so. It seemed they found the attention to their personal experiences positive. Many were pleased to be asked to contribute to something that might benefit other children in the future.

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Summary

The researcher arranged three separate meetings with the mothers and children to carry out the research procedure over an eighteen month period.

Some mothers were difficult to assess, as they would forget about the organised appointment with the researcher. This may have been reflective of their learning disability and may also have indicated a general level of disorganisation on a day-to- day basis.

Nonetheless, full sets of data were collected on all twenty-four mothers and children. The next section reports how these results were disseminated to all research

participants. The various NHS Trusts and voluntary services that had facilitated the study were also given feedback.

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3.10 Dissemination of research findings

The research feedback was given in a written format to both children and mothers. Children 8-12 years, 13-15 years and 16-17 years were sent a covering letter reminding them of the researcher’s visit to interview them and their mother. It also thanked them for their participation in the study and provided contact details for the researcher should they like any further information.

Included with this covering letter was a one-page summary of the research findings. This summary was written in age-appropriate language, in keeping with the research information leaflets that had been sent at the beginning of the study.

Similarly, mothers were sent a covering letter thanking them for their contribution to the study and providing contact details. They were also sent an overview of the research findings, which were designed in conjunction with MENCAP’s (2002) guidance on accessible writing and made accessible using Change Picture Bank symbols (www.changepeople.co.uk) to aid understanding.

The feedback sheets to both mothers and children also signposted them to their general practitioner should they wish to seek out services to address any of the issues raised by the study.

All NHS Trusts and voluntary services that facilitated the study were sent a two-page summary of the research findings.

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Summary

All participants and services who contributed to the study were given feedback on the research findings.

The next section turns to the research results and analysis of the data collected in the test measures.

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Chapter 4: Results & analysis

4.1 Participant characteristics

A total of twenty-four learning disabled mothers and their children took part in this study.

The mean age of mothers was 40.7 years (SD = 5.8; Range = 28-50 years old). In total, 87.5% of the participants were married or had a partner with whom they cohabited and 12.5% of the sample was divorced or single.

Mothers were assessed for learning disability using the WASI (Weschler, 1999) and the ABAS-II (Harrison & Oakland, 2000). Mothers’ mean score on the WASI was 63.7 (SD = 5.4; Range 55.0 -75.0) and their mean score on the ABAS-II was 59.9 (SD = 6.7; Range = 48.0 – 75.0).

Children’s mean age was 11.7 years (SD = 2.8; Range 8.0 – 16.0 years old). Mean age for females (n = 15) was 11.8 years (SD 2.9; Range 8.0 - 16.0 years old). Mean age for males (n = 9) was 10.2 years (SD 1.6; Range 8.0 – 12 years old).

Of the children, 66.7% of the sample had at least one other sibling. 33.3% of the sample were only children or had a sibling they no longer lived with due to removal into care.

Of the children who did have a brother(s) and/or sister(s), the mode number of siblings was 2 (SD.79; Range 1-3). All children were attending mainstream state primary and secondary schools and were assessed to rule out the existence of a learning disability using the WASI and the ABAS-II.

Children’s mean score on the WASI was 96.0 (SD = 10.1; Range = 77.0 – 119.0). Children’s mean score on the ABAS-II was 101.1 (SD = 13; Range = 70.0 – 125.0).