Article

An interview study of young adults born to mothers with mild intellectual disability Ida Lindblad University of Gothenburg, Sweden and Skaraborg’s Hospital, Sweden

Eva Billstedt

Journal of Intellectual Disabilities 17(4) 329–338 ª The Author(s) 2013 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1744629513508366 jid.sagepub.com

University of Gothenburg, Sweden

Christopher Gillberg University of Gothenburg, Sweden

Elisabeth Fernell University of Gothenburg, Sweden and Skaraborg’s Hospital, Sweden

Abstract A group of 10 young adults from a population-based series in Sweden, of originally 42 individuals, born to mothers with mild intellectual disability (ID), were interviewed with regard to their experiences during childhood, adolescence, and their current situation. The interview revealed that 6 of the 10 individuals had been removed from their biological parents during childhood, 6 reported clear child abuse and/or neglect, and 6 individuals had mild ID. The majority of the individuals reported difficulties in their relations with family and in school. The small number of participants (n ¼ 10) who could be personally interviewed reflected the major problems that were encountered in the process of making contact with this group of young individuals. In conclusion, this study adds to other reports that children of mothers with ID constitute an extremely vulnerable group. Therefore, these families need full and continuous attention from the supportive systems in society. Keywords mild intellectual disability, mothers with ID, foster care, neglect

Date accepted: 19/09/2013. Corresponding author: Ida Lindblad, Gillberg Neuropsychiatry Centre, Sahlgrenska Academy, University of Gothenburg, Kungsgatan 12, SE-411 19 Gothenburg, Sweden. Email: [email protected]

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Introduction Women with intellectual disability (ID) have been found to present antenatal and perinatal risks and be in need of tailored intervention due to their specific problems related to their cognitive impairment. In a population-based register study from Sweden, covering birth years 1999–2007, Hoglund et al. (2012) reported antenatal health, pregnancy, and delivery outcomes in women with ID. They found that a higher proportion of mothers with ID were teenagers, obese, smoked more often, and were single compared to women without ID. They also more often had a preterm birth, a cesarean section, and a discharge from hospital to other place than to home. The authors concluded that pregnant women with ID should be considered a risk group being in need of tailored support and care before and after birth. Starke (2010) interviewed seven mothers with ID, all receiving support from adult habilitation centers and from the municipal social service, with regard to mothers’ views and experience of their encounters with professionals. Mothers’ views and feelings indicated a need for improved interaction between mothers with ID and health and social service professionals. Cognitive limitation in a parent has long been recognized as a risk factor for abuse and neglect in children (Accardo and Whitman, 1990). In their review of studies in the field, the authors discussed that ‘‘within the context of child abuse/neglect, the observed results of inadequate parenting must outweigh the mentally retarded parents’ best intentions. There cannot be separate standards or expectations for adults of varying intelligence levels.’’ McGaw et al. (2010) have identified some high-risk variables among parents with ID: parental reports of childhood trauma, having a child with special needs, having own special needs, or factors related to the male partner. However, these important facts are not sufficiently considered, and a prevailing attitude in society has often been to normalize and not to question parenting of individuals with ID (Pipping, 2001; R¨onstr¨om, 1981). Hindberg (2003) noted that the parents themselves have to be aware of their needs for help and support from social services since the Swedish system of today is based on the view that support should be optional and that the individuals themselves should initiate the contact. Gillberg and Geijer-Karlsson (1983) reported from their follow-up of register data, covering 41 children, born to 15 mothers with mild ID, that 85% of the children had exhibited severe psychosocial problems. Similar findings with regard to psychosocial development and adjustment were described by R¨onstr¨om (1981) in another Swedish report. Several authors have emphasized that there are few studies regarding the situation for children born to mothers with ID (Pipping, 2001; Socialstyrelsen, 2005). We have also experienced this and found rather few recent studies in the field. There may be several reasons for this. A dilemma is the child’s need to be cared for on one hand and the mother’s rights as a parent on the other. Ethical aspects such as selecting people with ID for a study could be perceived as discriminating. Another ethical dilemma when studying children of mothers with ID would be the uncertainty about the extent to which the diagnosis is known by the mother herself and the child. Another Swedish study (Bager, 2003) highlighted that children born to mothers with ID often grow up in an environment characterized by insecurity and poverty. In his survey of a county in Sweden with regard to the number of children who were born to mothers with ID (1986–1995), a prevalence of at least 1.4 per thousand children was found. The fact that there are rather few children born to mothers with mild ID could negatively influence the capacity and knowledge among social services on how to approach and support these families. The situation of children born to mothers with ID has been insufficiently explored, and there is limited knowledge of the situation of children of mothers with ID based on self-reports. A few

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self-reports have been published about growing up as a child with a mother with mild ID (Pipping, 2004; Ronai, 1997). From these self-reports, it has become obvious that more focus needs to be paid to the situation of these children. The aim of this population-based study, therefore, was to focus on the situation of these children, by interviews taken when these individuals were young adults. Our intention was also that these data would contribute to the view of these individuals’ needs and rights in society.

Materials and methods Subjects In a southwest geographical and administrative Swedish health care region with approximately 275,000 inhabitants, Bager (2003) identified all children (n ¼ 53), born in the years 1986–1995 to mothers with ID (n ¼ 37) and registered with the county authorities responsible for supporting people with ID. All individuals with mild ID for whom any societal help is provided in Sweden are listed in this register. The child group was ascertained through these mothers’ registration. Almost 10 years later, in 2011–2012, 42 of these 53 children were 18 years of age or older (birth years 1986–1993) and were targeted for follow-up at this young adult age. As it turned out, 3 of the 42 children had died and 1 had moved abroad. Contact details/addresses of these young people were identified in the public Swedish population register. Thereafter, a letter of information about the study was sent to the 38 individuals. The letter included an outline of the study and information that a personal contact (telephone) would be made within a week by the psychologist responsible for the study (I.L.). Of the 38 individuals (Figure 1), only 17 could be reached by telephone; 7 of these did not want to participate and 10, representing 8 mothers, were willing to participate in the interview. The remaining 21 individuals could not be reached at all; 13 had no telephone numbers listed, landline and mobile numbers, and 8 did not answer any of 10 or more telephone calls made over a 2-month period from different ‘‘open’’ listed telephone numbers.

The interview The interview consisted of a semistructured schedule that was made up of certain central themes. The research group possesses long clinical experience of different kinds of developmental disabilities, including mild ID, and relevant themes for the interview were discussed and developed by the research group before the interviews started. The aim was to document these young individuals’ perceptions and experiences concerning their (1) family situation during childhood, (2) school situation and school achievement, (3) support and important persons during childhood, (4) adverse experiences, (5) developmental assessments and cognitive/psychiatric disorders, and (6) current life situation. Examples of questions were ‘‘I would like you to tell me about your family when you grew up?’’ and ‘‘Could you tell me about your school situation from the time you started school and until you finished?’’ The participants were asked to describe as much as possible within the different themes and the interviewer keyed the information that was given in a computer. No audio recorder was used. The interview lasted in general between 2 and 3 hours, depending on the participants’ ability to cooperate with the dialogue at the meeting. The interview took place either at a hospital or at the participants’ supporting housing. In two cases, the informant was accompanied by his or her assistant at the interview.

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42 individuals Born to women with mild ID 1986–1993

3 dead

1 moved abroad

(7%)

38 contacted by letter (Including two reminders)

13 no listed landline or mobile telephone

8 no response to more than 10 telephone calls over 2 months

17 reached by telephone

7 denied to participate in the interview

10 consented to participate in the interview

Figure 1. Flowchart showing the procedure of the contacts with the study participants.

The interviewer read and analyzed the transcriptions and structured the text into the different themes. The transcripts were also read by two independent raters (E.B. and E.F.) who reached at the same conclusion. The intention was also to use the SF-36, which is a 36-item short self-administered form for reports of different dimensions of health (Ware, 2000). The form is divided into eight health concepts: physical function (PF, 10 items), role limitations caused by physical problems (RP, 4 items),

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bodily pain (BP, 2 items), general health perception (GH, 5 items), vitality (VT, 4 items), social functioning (SF, 2 items), role limitations caused by emotional problems (RE, 3 items), mental health (MH, 5 items), and health transition (1 item). The last item, health transition, does not contribute to any of the scale scores. Each part is scored from 0 to 100 and a higher score accords with a better health status. However, since the SF-36 has not been sufficiently validated for people with cognitive impairments, and considering that 6 of the 10 interviewed had been given a diagnosis of mild ID, we found the items to be too cognitively demanding. Therefore, we chose to use only two of the items that were easy to understand: number 1: ‘‘In general, would you say that your health is’’ ‘‘excellent,’’ ‘‘very good,’’ ‘‘good,’’ ‘‘fair,’’ or ‘‘poor’’ and number 2: ‘‘How much bodily pain have you had during the past 4 weeks’’ ‘‘none,’’ ‘‘very mild,’’ ‘‘mild,’’ ‘‘moderate,’’ ‘‘severe,’’ or ‘‘very severe.’’ The study was approved by the ethics committee in Gothenburg.

Results Mean age of the 10 individuals (6 men and 4 women) that agreed to participate was 21 years (range 19–23 years). One of the participants was accompanied by an assistant at the supported housing during the face-to-face interview. In one case, the individual accepted to be interviewed but only if the questions were presented by the personal assistant at the supported housing. In that case the research psychologist handed over the written questions to the assistant and the answers were then noted by the assistant and returned to the psychologist. One interview was performed over the telephone. The remaining interviews were performed face to face.

Family situation during childhood Three young individuals grew up with their parents throughout their entire childhood. Another three had been placed in foster care during their preschool years, and one of them had to change and move to another foster family and later moved to an apartment supported by social services. One individual lived most of the childhood with the father and mother alternately and was taken into foster care at the age of 17 years. One grew up in a family treatment center with the mother and was taken into foster care at the age of 4 years. Two years later, the child moved to the father who was supported by social services. One individual lived most of the childhood alone with the mother and another one grew-up with close relatives since the mother died.

School situation and school achievement Four individuals started at a special school for children with mild ID, and two started at an ordinary school with a lot of support and from middle school age they attended special schools for children with mild ID. Four attended mainstream school, three of them passed in all subjects, but one finished school without a degree and had had problems of various types and had been assessed by a psychologist since the parents and siblings had mild ID. However, we could not confirm this diagnosis in this individual.

Support and important persons during childhood Of the 10 individuals, 3 reported that they had had some important support from a family member/ close relative during childhood. Three, including one of those who also reported support from a family member, mentioned that support from Free Church had been of importance during their

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childhood. Two of those who reported such support from Free Church mentioned that they had not had any support from a family member/close relative. One mentioned that friends had been of importance and reflected about his childhood and wondered how it might have turned out if he had received more family support. Four individuals reported that they had had no support and no person of importance during their childhood and one of them expressed feeling very lonely during childhood and young adulthood.

Adverse experiences Six individuals reported or clearly indicated that they had been abused and/or neglected during childhood. For example, one of them described having told the staff at the social services that the parents ‘‘hit them like bears.’’ This individual also reported being sexually abused by the father. Another one reported missing an adult to talk to and someone who would have taken better care of him. ‘‘I do not think that anyone should have to have it as I have had it, that is why I’m telling you this.’’ Of the remaining four, one reported severe conflicts with peers and parents and another two reported being bullied. One individual who was taken into foster care early did not report any adverse experiences.

Developmental assessments and cognitive/psychiatric disorders Of the 10 participants, 7 had had a cognitive assessment; and of these, 6 had been given a diagnosis of mild ID. One of these also had attention-deficit hyperactivity disorder, autism spectrum disorder (ASD), depression, and anxiety. Another one had deficits in attention, motor control, and perception in addition to mild ID, and another had depression in addition to mild ID. One individual had a diagnosis of depression.

Current life situation Of the six individuals with a diagnosis of mild ID, five worked with ‘‘municipal supported activities’’ and one was still attending special upper secondary school. Of the remaining four, two were studying: one attended a nursing education and one a residential college for adult education to become a youth worker in a church. The third one was unemployed and the fourth was on sick leave from an employment as a cleaner. Three of the interviewed reported meeting their parents sporadically/rarely. Four individuals lost their mother; and of these, three had sporadical contact with their father and one had no contact with the father at all. Another two had contacts only their father and not with their mother. One individual reported having contact on a regular basis with parents. Of the six with mild ID, one lived independently with support from the father and five lived in a supported housing. Of the four individuals with no diagnosis of mild ID, two lived on their own, one of them had a young child. The third individual lived in a student home at the residential college for adult education and the fourth lived with the foster family.

SF-36 For the two items used in the SF-36, one individual reported the general health to be excellent, three as very good, four as good, one as fair, and one as poor. Seven scored that they had none BP, two scored very mild, and one scored severe BP. These results were in accordance with the general population.

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Discussion The findings obtained in this study were based on the participants’ reports and revealed that the large majority of these young adults born to mothers with ID had experienced severe childhood conditions. Only 1 of the 10 interviewed individuals, who had grown up with close relatives, had had a good childhood. Our study supports the fact that children born to mothers with mild ID need considerable attention. Another finding from the study was the great difficulties in making contact with these young individuals. Of the 38 eligible individuals, it was possible to contact only 17. The remaining 21 individuals could not be contacted at all (see Figure 1), because either they had no listed landline and mobile telephone number or they did not respond to any of the invitation or reminder letters sent out. In this group of 10 individuals, 3 were siblings, meaning that the interviewed group represented 8 mothers with mild ID in the study sample that originally comprised 37 mothers. Thus, the small study group taking the in-depth interview was representative only of those who were contacted and who wanted and had possibilities to participate in an interview. We do not know how well the findings from the interviews reflect the overall situation at young adult age of the whole sample, but, if anything, we have a reason to believe that there may be more problems in the group that did not participate (Stormark et al., 2008). At the interview, 6 of the 10 individuals had received a diagnosis of mild ID. Our study group was small, and cannot be claimed to be representative, and the relatively high rate of ID in our study could possibly be explained by the fact that three of the individuals with ID initiated contact with the research psychologist with help from their social services. Other studies report that the rates of ID in children of mothers with ID are about 30–50% (Feldman and Walton-Allen, 1997; Gillberg and Geijer-Karlsson, 1983). The interviewed young adult individuals reported thought provoking life histories and their experiences add to the existing knowledge about this vulnerable group. In the present study, 6 of the 10 individuals had been removed from their biological parents during their childhood, and in one case as a result of the mother’s death. Our findings accord with a previous Swedish study by Gillberg and Geijer-Karlsson (1983) who report that 45% of the children in 79 families headed by a parent with ID had been separated from their parents. In a Norwegian study (Morch et al., 1997), similar findings were reported; 38.5% of the children of parents with an intellectual disability were taken into care. In an Australian study (Llewellyn et al., 2003) of care proceedings, 9% of the children had parents with IDs and thus this parent group is substantially overrepresented in care proceedings. Starke (2011) reported that views and experiences among professionals, working with parents with IDs, differed according to whether the child was living with the parent or the child had been placed in out-of-home care. When the child was living at home, the professionals were worried about the parental skills and the parents’ inability to fulfill the needs of the child. When the child was placed in out-of-home care, the professionals rather spoke of the importance of the parental role and the essentials in supporting the ongoing contact between the child and their parent. The author discussed the importance of giving the professionals appropriate support and a broadening of their knowledge of ID and parenting. Of the 10 interviewed individuals, 7 reported that they had received some important support from a family member/relative or from church during their childhood. The remaining three individuals mentioned that Free Church had been of great importance to them. In their article regarding the children of parents with learning disabilities, Booth and Booth (2000) defined a

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supportive network of relations like having a number of school friends, friends in the neighborhood, helpful neighbors, a valuated service worker, good institutional supports, and at least one supportive adult outside the family. According to this definition, we perceive that only one or two of the participants met the above-mentioned criteria. Children of mothers with mild ID are at a high risk for child abuse and neglect (Crain and Millor, 1978; Feldman and Walton-Allen, 1997; Ronai, 1997; Seagull and Scheurer, 1986). At least six of the participants in our study reported child abuse and/or neglect. Only one described their childhood as being good. This individual had been moved from her mother to a close relative when she was 2 years of age. The majority of the individuals mentioned difficulties in their relations both in the family and in school. At time of this interview, three of the participants had ongoing treatment for depressions and two of these also had ID. All had been taken into care during childhood and all had experienced abuse and/or neglect. This is consistent with Emerson (2003), reporting a higher prevalence of mental health difficulties, including depression in individuals with ID. The instrument SF-36 was discussed in a review by Riemsma et al. (2001) with regard to different health measures in individuals with cognitive impairment. SF-36 has been validated in two studies in which 20–50% of the respondents were cognitively impaired and the quality score was found to be low. The authors also noted that the higher the proportion of the respondents who had cognitive impairments, the poorer validity the instruments showed. Their results indicate that instruments for measurement of general health status are not automatically generalizable for people with cognitive impairment. Eight participants reported very good, good, or excellent health, which had to be interpreted with caution, considering the validity problem in this study group. According to Walsh et al. (2011), chronic pain is a significant problem for people with ID. McGuire et al. (2010) found much higher prevalence of pain among individuals with mild ID than other levels of ID and concluded that pain in the ID population may be underrecognized and undertreated, especially in those with impaired capacity to communicate about their pain. Based on this knowledge, we found that this question in the SF-36 could be used. In our study group only three reported some degree of pain. Our group was younger than the groups described by Walsh and by McGuire, which may be of importance for this symptom manifestation. Our findings indicate that the information obtained directly from the grown-up individuals of mothers with ID contributes to the broadening and deepening the understanding regarding their needs for professional services and support. We did not have more detailed information about the possible co-occurring conditions and impairments in mothers. It can be assumed that many other conditions influence the mothers’ capacity to take care of the child. The degree of IQ within the defined range of 50–70 is important, as well as the existence of other additional psychiatric disorders or ASD. Tymchuk and Feldman (1991) noticed that there was a high risk that the diagnosis, that is, ID, of the parent did not alone explain the individual’s needs. The authors emphasized the need for more specific assessments of competence and of parenting ability. They found that a positive factor for the children was the parent’s willingness to accept help (Tymchuk and Feldman, 1991) and, for the parent to be willing to receive help, this needed to be adequate and adapted to the individual parent. McConnell et al. (1997) remarked that professional lack of knowledge and understanding of ID could lead to a negative interaction with the parents. The authors emphasized the need to enhance education of professionals meeting patients with ID and to improve knowledge of the large variance in this group with regard to parenting skills.

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Many authors have discussed programs for training parents with ID, including programs based on self-instructional audiovisual child care manuals (Feldman, 1994; Feldman and Case, 1999; Hur, 1997; Tymchuk, 1990). One home-based training program addressed the child’s health and safety issues (Llewellyn et al., 2002). Some results are encouraging and such strategies need to be systematically studied and evaluated. In conclusion, we found that the interviewed sample represented an extremely vulnerable group of individuals and the vast majority had not had their basic needs met during childhood. The situation of these children and their parents needs to be a top priority issue in habilitation and social services. Hopefully national guidelines could be developed to help professionals to take the appropriate actions—with regard to the mother and the child. Mothers with ID often have different types of cognitive problems. In addition to the core symptom of ID, that is, a low intellectual ability, other accompanying cognitive and emotional disorders may significantly impede the capacity to take care of a child. This means that mothers with ID would need considerable help and support from habilitation and society. Also, the children of mothers with ID often present with different types of impairments and accordingly require different types of intervention. Important issues in such national guidelines would also deal with how to follow-up children placed in foster care and to ascertain the quality of these families. Intervention needs to be tailored to each family and child and should always include a close follow-up of the child’s well-being. Acknowledgments The authors are indebted to the young individuals who participated in the interview and to Dr. B¨orje Bager, formerly neuropediatrician in the county, for encouraging us to perform the study.

Funding Financial support was given from the Research and Development Center at Skaraborg’s Hospital and from Wilhelm and Martina Lundgren Foundation.

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An interview study of young adults born to mothers with mild intellectual disability.

A group of 10 young adults from a population-based series in Sweden, of originally 42 individuals, born to mothers with mild intellectual disability (...
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