Full Terms & Conditions of access and use can be found at
https://www.tandfonline.com/action/journalInformation?journalCode=iocc20
ISSN: 1103-8128 (Print) 1651-2014 (Online) Journal homepage: https://www.tandfonline.com/loi/iocc20
Everyday life when growing up with a mother with
an intellectual or developmental disability: Four
retrospective life-stories
Ingrid Weiber, Per-Anders Tengland, Johan Sanmartin Berglund & Mona
Eklund
To cite this article: Ingrid Weiber, Per-Anders Tengland, Johan Sanmartin Berglund & Mona
Eklund (2020) Everyday life when growing up with a mother with an intellectual or developmental disability: Four retrospective life-stories, Scandinavian Journal of Occupational Therapy, 27:6, 418-430, DOI: 10.1080/11038128.2018.1554087
To link to this article: https://doi.org/10.1080/11038128.2018.1554087
© 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
Published online: 20 Jan 2019.
Submit your article to this journal
Article views: 1751
View related articles
ORIGINAL ARTICLE
Everyday life when growing up with a mother with an intellectual or
developmental disability: Four retrospective life-stories
Ingrid Weibera,b, Per-Anders Tenglanda, Johan Sanmartin Berglundb and Mona Eklunda,c
a
Faculty of Health and Society, Malm€o University, Malm€o, Sweden;bDepartment of Health, Blekinge Institute of Technology, Karlskrona, Sweden;cDepartment of Health Sciences, Lund University, Lund, Sweden
ABSTRACT
Background: The voices of those who have grown up in a family with maternal intellectual or developmental disability (IDD) are valuable for gaining an understanding of their situation, which is essential in order to be able to support these families and avoid potentially detrimen-tal situations.
Aim: The study aim was to describe the experience of having grown up in a family where the mother has an IDD, with a focus on everyday life and perceived health consequences in adult life. Method: A qualitative method with retrospective narrative interviews and narrative content ana-lysis was chosen. In-depth interviews were performed with four women who had experiences of a childhood with maternal IDD.
Findings: Four themes emerged: Living under adverse circumstances; Dealing with one’s every-day life situation; Receiving insufficient support and wishing for more; and The echo from child-hood into adult life. The findings revealed a distressing childchild-hood, characterized by neglect, abuse, anxiety, and overburdening responsibilities, and also endeavors to keep the family situ-ation a secret, while at the same time wanting the adult world to react.
Discussion: The findings can hopefully stimulate occupational therapists and other professionals to more effectively identify the situation of these children and provide support to prevent adverse future health conditions and poor well-being.
ARTICLE HISTORY Received 22 January 2018 Revised 19 November 2018 Accepted 26 November 2018 KEYWORDS Childhood experiences; intellectual disability; developmental disability; maternal; activity; qualitative inter-views; support Introduction
Being a child in a family with maternal intellectual or developmental disability (IDD) could entail a child-hood similar to that experienced by other children, but also a risk for adverse childhood experiences and related ill health [1]. Some people with a mild ID liv-ing in the community might desire to live like every-one else, which can involve building families and having children [2]. It cannot be excluded that the ID may have detrimental effects on parental skills, such as difficulties in meeting the social and psychological needs of their children. There is no consensus in this respect, however, as shown in a review of child devel-opment in relation to parental ID [1]. Some of the reviewed studies indicated poor outcomes for children with parental ID and others that the developmental levels of the children approached population norms.
It was estimated in 2010 that there were 4050 chil-dren (0-18 years) born to a mother with an ID living
in Sweden [3]. Those who have a mother with a developmental disability (DD) comprise a larger group for which there appears to be no estimation of size. These children constitute a group of a consider-able size and little is known about their upbringing and living conditions. DD is a broad term, which may be defined as‘a set of abilities and characteristics that vary from the norm in the limitations they impose on independent participation and acceptance in society’ [4]. DD should emerge before 22 years of age and includes, for example, learning disabilities, communication disorders, autism and attention-deficit hyperactivity disorder [5]. A joint definition for ID and DD (thus IDD) has been proposed as ‘one of a cluster of categories used to refer to people whose intellectual capacities, communication skills, and/or behavior are determined to be developing, or to have developed, at a slower rate or to a lesser extent than what is deemed to be typical’ [6].
CONTACTMona Eklund mona.eklund@med.lu.se Department of Health Sciences, Lund University, Box 157 SE-22100 Lund, Sweden.
ß 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License ( http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way.
There is a lack of research focusing on the parent-hood of individuals with IDD [7], while a number of studies have been performed that address the moth-er’s situation and perspective, such as those by Llewellyn and colleagues. They showed, for example, that mothers with an ID had poorer health than other mothers [8] and described their social networks as being restricted to service-centered or family-centered networks [9]. Another study focused on mothers whose children had been removed by the authorities and described the grief and powerlessness they experi-enced [10]. Llewellyn [11] argues that most mothers with an ID can provide sufficient parenting if they receive appropriate support. However, there are concurring reports of the likelihood that the children of mothers with an ID are compulsorily removed [1,12–14], also in Scandinavia [15].
According to the aforementioned studies, 40–60% of the children remain with and grow up under the custody of their parents with IDD. Studies focusing on the children typically address their level of devel-opment, health [16,17], or type of attachment [18] and tend to show that the children develop close to the norm when other circumstances are accounted for, such as poverty, any pathological conditions, and occurrence of abuse. Very little research has, however, focused on the child’s experiences and own view of everyday life when growing up with a mother with an IDD. A study performed in Canada showed that adult children who had an ID themselves were happier about their childhood than those without an ID. The latter had ambivalent feelings towards their parent with an ID (mostly the mother), were subjected to stigma, performed poorly at school, had few friends, and had problematic relations with figures of author-ity [19]. A recent retrospective Polish study gave a mixed picture [20]. The interviewees, now adults, remembered their mothers as ‘different’, but caring, and suffered most from being teased and humiliated at school, and also by the schoolmates’ parents. But there were also reports about lack of food and of hav-ing to take on responsibilities for the family one was not emotionally prepared for. In a Danish longitu-dinal study by Faureholm [21], children of mothers with an ID were interviewed twice, as children (8– 12 years) and as young adults. The children became aware of their mother’s shortcomings when they began school. They realized they could not get any help with homework and were shunned in school for having poor hygiene. Stigma and peer rejection were common experiences and they felt ambivalence towards their mothers. Grandparents were, however,
found to be a greatly appreciated resource in all of these studies. Two Swedish studies addressing a child-hood with maternal IDD were found. In one of them all interviewees had an ID themselves [22] and in the other six out of ten had an ID [23]. There thus appears to be no Swedish study that has addressed children without own ID who lived with a mother with IDD during their childhood. Their view would be important since research has shown that children without an IDD, but with a mother with such a dis-order, perceive life as more cumbersome and feel more bullied outside home compared to children who have an IDD themselves [19].
It is commonly accepted that people bring their childhood experiences into their adult life. These experiences can impact both positively and negatively on adult health and the quality of adult life. Adverse childhood experiences are associated with an increased risk of premature mortality [24], and with long-term adult health problems [25], including men-tal health problems such as depressive and anxiety disorders [26,27].
Adverse childhood experiences thus appear to negatively impact adult life, but adequate support from society can be an important factor in alleviating the effects of this negative impact. Previous studies of professionals supporting parents with ID have indi-cated that although many different sectors provide support, much remains to be done in order to enhance a child focus [28,29]. Those professionals also indicated a need for further knowledge about children’s everyday life in such families in order to be able to develop better support strategies. It is import-ant to learn more about childhood experiences by lis-tening to the voices of those with first-hand experiences of having grown up with a mother with IDD, in order for society to be able to understand and if necessary give adequate support to these chil-dren and their families. This was the rationale for the present study, which for ethical reasons took a retro-spective approach and addressed adults no longer under the custody of their parents.
Aim
The aim of this retrospective study was to explore how adults who as children grew up in a family where the mother had an IDD describe their everyday life as a child and to explore the perceived consequen-ces in adult life. The study was not restricted to any specific aspects of everyday life and sought to address
both positive and negative experiences, as they were freely narrated by informants.
Methods
This study, which was performed in Sweden, had a qualitative approach with the aim of obtaining know-ledge about people’s experiences of everyday life as a child [30]. Narrative interviewing was chosen for gathering data and content analysis for organizing and analyzing the data gained from the interviews. This combination of methods has been deemed pref-erable when aiming to describe everyday life experien-ces [31]. The narrative interview is a form of discursive deed [32], which means that the primary undertaking for the interviewer is to facilitate the interviewees’ creation and communication of their life history [33]. Content analysis organizes and catego-rizes the data into common meaning units, based on similarities and differences in the interview data, which may then be compiled into overarching themes and subthemes [34].
Recruiting informants
The inclusion criteria were: a background of having lived most of their childhood with a mother with IDD; not having IDD themselves; and being older than 18 years. Two consecutive strategies for recruit-ing informants were tried. First, professionals and others with contacts with the target group were requested to ask persons meeting the requirements if they were willing to be interviewed. This strategy failed, as no individual approached this way agreed to participate. A second strategy of placing advertise-ments in five local newspapers was thus utilized, and the advertisements were combined with further infor-mation about the study on the homepage of the regional university. This second strategy led to four women contacting the research team. All met the cri-teria and were willing to be interviewed.
Informants
The four informants have been given fictitious names and some personal details were altered in order to retain anonymity.
Ellen was in her fifties, had no children, and lived by herself in a small town in the south of Sweden. Ellen was the oldest sister and had three half-siblings, two sisters and one brother, four to fifteen years younger than herself. Her parents never married, and
she had never lived with her father. Ellen described her mother as having difficulties with communication and social behavior, and in managing everyday life. During Ellen’s childhood, her mother had simple jobs and Ellen spent most of her preschool period living with her maternal grandmother. Ellen moved back home to her mother when it was time to start school, at the age of seven.
Cecilia was in her forties, had two children, and lived in one of the major cities in Sweden. She was divorced but had a cohabiting partner. She worked with family investigations for the social services. According to Cecilia, who had a younger and an older brother, her mother had difficulties with cogni-tion, memory, planning, and social behavior, as well as in coping with her everyday activities. Cecilia’s mother was unable to fulfill the demands of employ-ment and had not worked during Cecilia’s childhood. Cecilia’s parents divorced when she was three years old and she became separated from her siblings and her father. When she was six years old her mother met a man with a substance use disorder who moved in with them with his two children. These children were removed by the social authorities when Cecilia was about ten years old but the mother’s partner con-tinued to live with them. His drinking increased to such an extent that he died when Cecilia was thirteen years old. After that, other men lived with the family, many of whom had substance abuse problems.
Monica was also in her forties, had three children, and lived in a small town in the south of Sweden. She was married and worked part-time as a preschool teacher. She was the youngest of seven siblings and grew up in a village. Her parents were married and lived together until the father died when Monica was around 25. Monica described her mother as having cognitive problems, as well as difficulties with hygiene and in managing the house and the family. Monica’s mother had not worked outside the home at all, and her father took care of his wife and cared for the whole family, while only having a low wage in rela-tion to the size of the family. However, Monica’s father had medical issues, such as heart problems, and frequently stayed in hospital. This meant that he was away from home and from his job for long peri-ods of time, which also contributed to long-term socio-economic problems for the family.
Britta was in her thirties, married, and lived with her husband and a one-year-old child in a medium-sized city in south-west Sweden. She was currently studying at university level. Britta claimed that her mother had difficulties related to cognition,
communication, and social behavior, but had worked during Britta’s childhood. The parents divorced when Britta was a year old. During her early years she was sexually abused by her father, acts that were perpe-trated during her regular visits to him. The sexual abuse culminated in an attempted rape before she was four years old. Although the father was convicted of sexual abuse, his persistent harassments of both mother and daughter made it necessary for them to move and to apply for confidentiality of personal information, which they maintained throughout Britta’s childhood and adolescence.
Interviews
The first author performed the interviews, which took place in the homes of the informants in three cases and in another convenient locality in the fourth case. Three of the women were interviewed twice, with an interval of about two weeks and with a duration of about 70–80 minutes per interview. Prior to the second interview, the first author listened to the pre-vious interview thoroughly, while at the same time reading the transcribed version. This was done in order to prepare questions that could generate a more profound narrative of everyday life during the inform-ants’ childhood. One informant (Cecilia) was inter-viewed only once, for about 90 minutes.
Information about the study was given to the informants and written consent was obtained prior to each informant’s first interview. The interviewee was asked to relate her life as a child, and if necessary, prompting questions were posed, in order to gain a deeper understanding of the informant’s experiences. The interviews were audio-recorded and transcribed verbatim. All informants agreed that if further infor-mation was needed the interviewer could contact them by e-mail, which was done once, with Cecilia.
Data analysis
The analysis of the transcripts was performed accord-ing to the followaccord-ing procedure inspired by Neuendorf [34]: (i) Reading the transcripts several times in order to grasp the overall meanings, (ii) Marking text pas-sages that formed significant components of each informant’s narrative and identifying similarities and differences, (iii) After re-reading the texts, excerpting the main components and grouping them into pre-liminary categories, (iv) Examining the prepre-liminary categories and finally grouping them into themes and subthemes on the basis of their contents, (v)
Reviewing and labeling the themes in such a way that they became mutually exclusive, and (vi) Ensuring that each informant’s life story was reflected in all the themes, but not necessarily in all subthemes. Openness to both positive and negative experiences was carefully considered throughout the process of analysis. The findings below reflect solely the inform-ants’ narratives and no interpretation has been added. Although the statements have been condensed and transformed into written language they remain close to the initial stories.
Triangulation
All four informants participated in informant triangu-lation. The findings were sent by mail to the inform-ants to elicit comments on the authenticity of the rendering of their own story, and to secure the trust-worthiness of the analysis. These comments resulted in a few minor alterations to the text.
It is possible to question the relevance of the inter-views in today’s society due to the retrospective nature of the study. Therefore, we wanted to comple-ment the informant triangulation by expert triangula-tion. Five professionals from sectors involved in supporting families with IDD were contacted and asked to give their reflections on the findings of this study. These professionals had recent experiences of supporting families with parental IDD and had taken part in interviews for two previous studies [28,29]. The triangulation interviews lasted for 30–60 minutes, and were performed at the professionals’ workplaces. The professionals unanimously judged that the child-hood situations related by the four informants could have taken place in the present times, and that the poor living conditions referred to by Britta, Cecilia, Ellen, and Monica still exist, particularly in families where the parents are unemployed or have low-paid jobs.
Ethical considerations
The present study was performed in compliance with the ethical guidelines of the Declaration of Helsinki. It is part of a research project with approval from the Regional Ethical Review Board in Lund, Sweden (Reg.no. 2008/374, Reg.no. 2010/138, and Reg.no. 2012/664). Each informant gave their verbal and writ-ten informed consent. The right to withdraw from the study at any time without having to state a reason was emphasized by the first author, who also informed all the informants about the confidential
treatment of the data and their anonymity status in the future article.
Findings
Four themes emerged from the data: (1) Living under adverse circumstances (with the subthemes ‘an ambiguous emotional situation’ and ‘lack of physical care and malfunctioning parenting’); (2) Dealing with one’s everyday life situation (with the subthemes ‘dealing with bullying and seeking trust’ and ‘managing material problems at home and at school’); (3) Receiving insufficient support and wishing for more (with the subthemes ‘receiving informal support’ and ‘desire for formal support’); and (4) The echo from childhood into adult life. See also Figure 1 for an overview.
Living under adverse circumstances
The informants told about a stressful life situation and deficiencies in several aspects of daily life, such as lack of emotional and practical support within the family, poverty, and intimidating situations at home and at school.
An ambiguous emotional situation
The informants described ambivalent emotions towards their mothers in terms of a mixture of love, shame, fear, and guilt. They felt love, but often shame and guilt when the mother’s deficiencies were exposed to relatives, friends, and others. They were sometimes intimidated by their mothers’ behavior and
experienced frightening situations such as punish-ments and misguided protection. Monica and her sib-lings had difficulties sleeping at night, since their mother frequently had severe nightly anxiety attacks during which she would scream and throw plates and other things. Ellen’s mother had a habit of locking the door to the bedroom where Ellen and her siblings were shut in, by way of punishment. She could also lock them up in the flat when she went out to work or to see a boyfriend, as a way of protecting her chil-dren. The informants said that they could never anticipate their mother’s behavior and lived in con-stant distress because of the risk of arbitrary punishments.
The informants also felt that their respective moth-ers could not be trusted in what they said, partly due to them making things up when they did not know the answer to a question. The informants further claimed that this resulted in a general mistrust in adults (at the time) and a lack of knowledge about a variety of everyday subjects.
Lack of physical care and malfunctioning parenting
Ellen, Cecilia, and Monica reported a serious lack of food, care, and housekeeping, whereas Britta’s mother was better able to provide for her daughter in these respects. During childhood, Ellen showed signs of growth deviation due to lack of nutritious food, and the school nurse frequently sent her to the school doctor for checkups and weight control. These check-ups merely resulted in recommendations to drink double cream, which was, however, deemed too expensive by the mother. Monica’s mother lacked the Figure 1. The themes and subthemes that compose the informants’ views of everyday life as a child.
ability to plan and cook sufficient amounts of food to feed the whole family, and the father seldom cooked or bought food. There appeared to have been an agreement between the parents that this was the mother’s task. The children had to find additional food items such as bread and marmalade. Britta’s mother, however, was a sufficient provider in this respect and her daughter had not experienced any shortage of food.
It was also noticeable that all four informants’ mothers had failed to ensure that the children woke up and left for school in time. Waking up in the mornings was thus a major problem for the inform-ants, and as their mothers also seldom made break-fast for them they mostly left home hungry. The three informants who were most exposed to an inad-equate provision of nutrition reported never having eaten a proper morning meal during the whole of their childhood. The informants had periodically high levels of absenteeism from school, due to being late for school or truancy. Monica was an exception in this respect, however, since the interest in her daily life shown by her father and her siblings pre-vented her being truant.
The mothers’ abilities for and attitudes towards maintaining a tidy home and washing clothes varied. Most of them appeared to be deficient in these respects and did not provide their children with clean, season-appropriate clothes. The homes were generally in a poor state, which had consequences for the informants’ well-being, such as feeling ashamed when friends came to visit. Britta’s mother, on the other hand, was keen on tidying the flat and took good care of hygiene in the home.
Dealing with one’s everyday life situation
Having to live under adverse circumstances led to various consequences. For example, coming to school with inappropriate and dirty clothes exposed the informants to further stress that they had to deal with. Such consequences and how to deal with them, formed the second theme.
Dealing with bullying and seeking trust
The informants had to struggle with feelings of shame, mistrust, and worry caused by their home situation. Two of the informants were severely bullied by other schoolchildren. They believed it was prob-ably due to their appearances – often dirty and with-out proper clothing – and the low level of their achievements at school. The informants told that they
avoided school at all costs, due to the bullying and the fact that the teachers had no effective way of deal-ing with that. The experience of bedeal-ing bullied, coupled with the absence of adequate help, caused shame, fear, sadness, exclusion, and loneliness, which they had to deal with without maternal involvement. These feelings were augmented by a realization of how different their situation was compared to that of other children. One solution for this emotionally stressful situation was to be at home in solitude. Being alone in the flat with the cats and her books in the afternoons after school, was a solace for Britta. Yet, the return home of the mother in the evening meant that the peace was over. Cecilia, on the other hand, presented a very tough attitude towards her peers, and was never exposed to any bullying.
A major emotional problem was the struggle to keep the family’s situation a secret from the outside world, as far as possible. The informants believed that it was quite clear to the others in school that some-thing was wrong, but they did not recall any occasion when the teachers asked about their family situation. Moreover, they felt that the adults at school treated them differently in comparison with the other chil-dren, because of them looking poor and dirty.
The informants had various way of coping with the lack of appreciation and confirmation from their mothers. Monica, who was the youngest in a large family, turned to her siblings and her father in order to be seen and appreciated. Britta had her own way of dealing with feelings of mistrust and other emo-tional reactions. She self-medicated by using alcohol and cannabis in her late teens in order to escape emo-tionally from her family situation. She later realized that she had to deal with her past in a better way; she found and started to attend a therapy group when she was about 20 years old. Cecilia had friends who gave her appreciation and confirmation. At the age of seventeen, she also contacted a child psychiatric clinic and received counseling there for a short time and again later in life had a long period of therapy in order to learn to deal with her childhood experiences.
One way of dealing with a gradually deteriorating emotional situation was to move out of their respect-ive homes during their teenage years. They spoke of moving as an escape; Cecilia moved to a flat, Monica to one of her older brothers, and Britta to a boy-friend. Ellen, who had run away several times, had at the age of 14 managed to acquire a small flat with the help of her mother’s boyfriend whom she had per-suaded to help her. It was, however, support that was dysfunctional, she maintained, and she laughingly
stated that she, herself, would never help any 14-year-old daughter to have a flat of her own, and added that one cannot have such a noninterfering approach to a child’s upbringing.
Managing material problems at home and at school
This subtheme reflects the informants’ struggle to cope with the day-to-day management of the home and family. They felt responsible for their own situ-ation, for practical duties, and also for the well-being of the other family members.
Their response to the apparent parental neglect was to take responsibility for the practical matters in the home at a very early age, feeling that they had to take charge. Cecilia was only about five years old when she realized this, and Ellen, who was the oldest sister in her family, felt a constant worry for her younger siblings, throughout her childhood and into her adult years. This included a strong sense of responsibility for her siblings’ well-being, a responsi-bility that permeated everything she did. Her sense of responsibility for her siblings did not diminish when she had moved away from home at the age of four-teen. One of her siblings came to live with her two years later, when she had acquired a sufficiently large flat for the two of them, and over the years other sib-lings followed suit.
The responsibility for the family included trying to prevent conflicts that the men in the mothers’ lives sometimes started. Cecilia’s mother had a partner who was very aggressive and lived with them for seven years. This meant that Cecilia often felt that she could not go to school due to feeling that she had to stay at home to protect her mother from the aggres-sive partner in case he became violent.
Three of the informants were constantly hungry due to not receiving sufficient food at home. This was partly remedied by them having free school lunches, which was provided for all schoolchildren in Sweden. They all enjoyed the school meal and had a great appetite, eating everything eagerly. This was noticed and appreciated by the staff in the school refectory who saw them as children to whom it was gratifying to serve food.
The personal situation also included not being suc-cessful at school, resulting in low grades for some of the informants. Cecilia chose to move to a new school in the ninth grade, after realizing that she wanted to go to high school. Her attendance in school had pre-viously been very poor, resulting in large knowledge gaps and low grades, so she realized she needed
special educational help. Her new school, which speci-alized in educating pupils with special needs, gave her this assistance.
In order to escape their relative poverty and earn their own money, most of the informants started to work early in life. Monica, however, relied on her older brother, whom she lived with, to provide for her during her high school years. As for Cecilia, her solution to lack of money had from her early teenage years been to steal substantial amounts of money from her mother’s male friends and use it for buying clothes and food for herself.
Receiving insufficient support and wishing for more
The informants’ needs for support and the lack of adequate support during their childhood was a prom-inent theme in the interviews.
Receiving informal support
The extended family and friends, and in one case a dedicated teacher, tried to provide informal support. Although the informants valued this informal sup-port, it was seen as not being sufficient to compensate fully for the informants’ adverse circumstances.
All the informants had contacts with their extended families, such as grandparents, but the sup-port from them varied and did not fully counterbal-ance their mothers’ malfunctioning behavior. Britta remembered with affection how happy she was when visiting her maternal grandparents’ house. The rela-tionship with them, and her uncles and aunts, meant a great deal to her. Ellen had constant contact with her maternal grandmother in her early years, but her grandmother was very old, as she was around 70 years old when Ellen was born, and did not live close to Ellen’s mother’s flat. Cecilia’s maternal mother visited them occasionally and then the grand-mother tried in vain to make her daughter take better care of the house.
The two informants who had older siblings experi-enced some form of support from them. Monica had a great deal of informal support from her older sib-lings, in particular her older sister, who taught her hygiene and how to dress properly when she was a child. In that sense, Monica’s older sister thus took on a similar role of taking responsibility in the family as Ellen had done in hers, being the oldest sister in that family. After Cecilia regained contact with her older brother at the age of 17, he tried to support her
by, for example, encouraging a healthier lifestyle and making her stop smoking.
Cecilia had close friends who stood by her side and understood her situation. Furthermore, she received very valuable informal support from a pro-fessional. A teacher in the new school she entered in the ninth grade, knew about her from before and took it upon himself to support her so that she would get to school every day. He called to wake her up, came to pick her up in his car, and drove her to school. Thanks to this invaluable help, she was able to devote herself to studying and improved her grades so that she was able to qualify for high school.
Desire for formal support
This subtheme reflects the absence of effective sup-port from the social and healthcare services, and the desire for such support.
Three of the informants spoke of having contact with the social services, while one family had no con-tact at all with the authorities during the informant’s childhood. Ellen recalled how the Child Protection Agency made several house calls after having been notified of possible maltreatment. Those house calls were, however, always pre-announced so Ellen’s mother had forced the children to clean and fix everything in the flat, and had given strict orders about what the children could say. Consequently, the Agency never found evidence of the suspected mal-treatment. Cecilia recalled that two or three reports were handed into the social services. None of the informants remembered ever being given any effective support by the authorities.
All the informants believed that they would have benefitted from someone who recognized their needs during their childhood. Ellen, Monica, and Cecilia would also have appreciated it if their mothers had received help with structuring the household chores, including providing clean clothes and sufficient food. Britta talked about how good it would have been if, in her childhood, someone had told her that her situ-ation was not a common one. She would have needed help in understanding that her situation was unusual, and that she, as a child, could not change her moth-er’s way of living or communicating.
The echo from childhood into adult life
This theme reflects how the childhood experiences were perceived as strongly influencing the informants’ decisions in adult life, their adverse health conditions of today, and current experiences of poor health.
Anxiety had been a recurrent feature in Britta’s and Cecilia’s lives since their childhood and into adult life. Britta said that, as far as she could remember, she had always suffered from anxiety and she recalled how she could not enjoy life when she had met her husband. She was, for example, very scared of flying, thinking that it would be so typical for her to die now that she had finally met someone. Both Ellen and Monica had suffered from burnout syndrome with anxiety and stress symptoms some years earlier, and Cecilia and Britta had periods of anxiety related to pregnancy and childbirth. Britta suffered from anx-iety throughout her pregnancy, and felt extremely uncertain about how to be a good parent as she had no positive role model to look up to. When Cecilia had just given birth to her second child, she had panic attacks accompanied by excessive anxiety and has had frequently recurring panic attacks since then.
Their childhood experiences also had implications for their decisions about building a family. The informants had dealt with the issue of having children in different ways. Cecilia, Britta, and Monica were married or lived with a partner at the time of the interviews and had children. Ellen, on the other hand, had made a deliberate decision not to have children of her own, though she had been married, stating that it was too much of an undertaking and responsibility. However, as mentioned above, she was always greatly involved in her siblings’ lives, as all of them had lived with her for shorter or longer periods of time.
The informants were at the time of the interview suffering from various adverse health conditions. Three of them had chronic diseases affecting their physical health, which they struggled with every day. Ellen and Cecilia both had disability pensions at the time of the interview; Cecilia was a partial disability pensioner. Their illnesses were of a psychosomatic nature, often expressed in terms of pain, which they saw as being partly related to their childhood experiences.
All four women recognized that they carried a bur-den from their childhood, which to a great extent had impacted both on how their lives had turned out and on their current health situation. As children they had felt that their upbringing was different from that of their peers, and their everyday lives had differed from ordinary family life. They had lacked insight, however, as to the cause of the situation, which made them unable to deal with it in a constructive way. This gave rise to worry and anxiety and the inform-ants thought it also made them predisposed for psy-chosomatic reactions, such as pain. They maintained
that their early years had left deep scars in their souls, affecting their current health and well-being.
Discussion
The narratives of the four informants revealed that they had childhood experiences of abuse, neglect, deprivation, anxiety, overburdening responsibilities, and a general lack of stability and support. This was reflected in Theme 1, Living under adverse circum-stances. They had all experienced emotional neglect as well as a lack of care and of essential material things, such as food and appropriate clothing. Something they also had in common were the difficulties shaped by the environment, in terms of being bullied and teased and feeling different, which resulted in feelings of shame. These findings are largely in agreement with the few previous studies of children to mothers with IDD [19–21]. Those studies reported about mixed feelings towards their mothers and various degrees of neglect regarding clothing and food. The informants in the present study appear to have expe-rienced a more detrimental situation compared to the just mentioned studies of children to mothers with IDD, which may be for several reasons. One reason is that they had indeed experienced more hardships than the interviewees in the other studies had. It could be that the families in which the informants grew up were afflicted with more burdens such as poverty, violence, and substance use, which would aggravate the neglect related to the mothers’ IDD. As discussed among methodological considerations, it could thus be due to selection bias.
It was obvious from Theme 2, Dealing with one’s everyday life situation, that most of the informants had taken on a considerable degree of responsibility for their family situation from their early childhood and onwards in order to make everyday life function as well as possible. At an early age, they were respon-sible for waking up on time in the morning, eating sufficient food, getting dressed, getting to school, and managing school and homework. Some of them also helped their siblings with these types of chores. This responsibility generated considerable worry and anx-iety, since they felt that the lives of the family mem-bers depended on them. This is in line with Pipping’s biography [35], where she described how she, as the oldest child in a family with maternal developmental disability, was the one who realized at a very early age that it was up to her to make everyday life func-tion in the family.
On the positive side, the informants’ narratives revealed that they had resources for coping, as shown, for example, in their finding solutions for how to get food, manage school, and help siblings. It seems that they developed these resources in a positive direction during their teens and found new solutions to new problems. Although these solutions were not always desired by society (such as stealing and taking drugs) the informants managed to break with bad habits and reorient towards more accepted behavior.
Theme 3, Receiving insufficient support and wishing for more, revealed that feelings of fear, worry, and anxiety had haunted the informants from childhood and still did. The informants claimed that relevant support from society could have helped them handle such feelings. Their desires for support included information; if someone had spoken to them about their mothers’ disability and the consequences of it when they were children, they would have stood a better chance of coping and their lives might have been easier. This reasoning is supported by research, where Edwinson Månsson [36] has shown that educa-tion and informaeduca-tion are valuable tools to prevent adverse emotional consequences of stressful life events. Weiber et al. [28] reported about a parental training program, where separate information meet-ings were held with the children and where the dis-ability and its consequences were described with a specific focus on the situation in their own family. A similar program would probably have benefitted the informants in the present study.
The support provided for families with these types of problems has been described as under-developed and the communication between different authorities as insufficient [28]. Measures that provide assistance to the families are desperately needed, considering that there are >4000 children living with a mother with an ID in Sweden, and that there is an even larger group where the mother has IDD. According to the findings in the present study, support to the mothers in the form of assistance in how to manage the home and the children would have been a signifi-cant help. This is an area where occupational thera-pists could make an important contribution and the municipal authorities should consider how to include occupational therapy for families with parental devel-opmental disability.
The informants experienced that adults around them were disinclined to talk about or act on their situation, with a few exceptions. The inability to acknowledge these children and their situation presents a challenge for the welfare sector to form
strategies to identify and support them. Children in families with, for example, parental substance abuse appear to receive some attention from the authorities, while children with parents with developmental dis-abilities might be more difficult to detect [21]. There is thus a need for strategies to identify these children and to act on the signals that are most likely observ-able. Older children in families with maternal IDD may be particularly vulnerable to too heavy a burden of responsibilities, and enquiring about their situation may be utterly important for those who work to sup-port the families with maternal IDD.
The importance of informal support (mainly from grandparents) is a prominent finding in many research projects [19–21], but was not so pronounced in the current study. Help from grandparents and other close relatives was not mentioned by the informants as something always there for them. For Britta, being with her grandparents was a precious memory from childhood, but it had not been a source of help in everyday life. Ellen spent some preschool years with her grandmother, but not her school years. Maybe the informal support– which in Cecilia’s case was decisive in making her complete school and go to university – was too scarce overall and that this con-tributed to the generally dark picture found in the present study of growing up with a mother with IDD. Theme 4 was termed The echo from childhood into adult life. The lack of nutritious food during child-hood might have been a contributory factor to the health consequences in the informants’ adult life as well as the generally detrimental effects of their child-hood, since malnutrition seems to be associated with faltering growth and an impaired immune system [37]. Furthermore, physical abuse, and in one case sexual abuse, was part of the adverse childhood expe-riences described by the informants. Emotional and physical abuse during childhood have been found to be associated with poorer adult health [18,24,25], which thus supports the informants’ perceptions that their current health problems had roots in their child-hood. On the other hand, it was also obvious that the informants had developed coping strategies to manage everyday life during childhood, something that they brought into adult life; they were able to complete an education, get a job, support themselves, and, in most cases, form a family.
Moving beyond the four themes and contrasting the findings as a whole against other research may further enrich this discussion. The lack of material resources, such as food, clothes, shoes, and hygiene articles, shaped the childhood of three of the
informants and had a significant influence on their everyday lives. An important question is, however, whether this was solely the result of the mother’s dis-ability or if there were other causes. A review by Collings and Llewellyn [1] found that factors such as poverty and social isolation also play a role in the cause-effect structure. However, the developmental disability may constitute an indirect cause of and a possible ground for the family’s socio-economic situ-ation [38]. Interestingly, the findings are in agreement with a study of mothers with borderline personality disorder. Desrosiers and Laporte [39] interviewed 40 mothers with that condition. The mothers reported difficulties with adhering to important daily routines, such as seeing to the physical care of the children and school supervision. The researchers identified poor mindfulness of the children’s needs, mood-dependent decisions, and difficulties inhibiting negative emotions as major obstacles to taking proper care of the chil-dren. This was based on the mothers’ reports, but the similarities with what the informants of the current study had experienced as children are obvious.
The informant who had experienced sexual abuse, Britta, had been molested by her biological father in early childhood. To what extent this was made pos-sible by the mother’s developmental disability is unknown. Tymchuk [40], for example, found that sexual abuse was uncommon in family situations with parental developmental disability. On the other hand, Lindblad and colleagues [23] reported a case of sexual abuse in their study, and Ronai [41] reported her own experiences of being sexually abused as a child in the presence of a mother with IDD. Although sex-ual abuse seems rare in the target group, a mother with IDD might have greater difficulties than mothers in general in detecting such abuse, or, as in Ronai’s [41] case, in protecting her child despite her knowing what was going on. There is very little research in this field, however, and no safe conclusions can be drawn.
Conveying the voices of those who have grown up with a mother with IDD without stigmatizing the mothers is a balancing act, as the mothers had most likely done everything they could to take care of their children but were poorly equipped both economically and regarding support in the social environment. Male abuse of the mother, poverty, and substance use among family members (also the informants them-selves) were aggravating circumstances that probably worked in the same detrimental direction as the IDD in itself. It has been shown, for example, that poverty is associated with the problems following from
intellectual limitations [42] and that mothers with IDD who themselves had been victims of abuse were more likely to have children with poor attachment compared to mothers who had not been abused [18]. A pronounced feature of the informants’ narratives was, however, that the families had not received any support from society, which could have helped them to provide good-enough parenting [11]. If the author-ities had been competent, resourceful, and willing to support the families, for example, utilizing the skills of an occupational therapist to support the mother in coping with home chores, the participants in the pre-sent study might have had a life situation with better opportunities for developing and succeeding. There is evidence of occupational therapists being involved in the support of families with IDD, not least in counsel-ing for couples who consider trycounsel-ing to become parents (personal communication, Jenny Hultqvist 20 December 2017), but no formalized program seems to exist. And although occupational therapists are employed to work with people with IDD we were unable to identify research that addresses occupa-tional therapy in parenting in this group. Occupational therapy for this group tends to focus on coping with everyday life for the persons with IDD themselves, and often on how to use technology to facilitate everyday life [43,44]. Such accomplishments could possibly be used to develop support for families with IDD.
Methodological considerations
This study has some limitations, but also strengths that should be acknowledged. One limitation was that all the informants were women. Life stories from a male perspective might have generated a different perspective and thus richer data, particularly as girls were generally more involved than boys in helping out with household chores at the time of the inform-ants’ childhood [45]. Furthermore, we only had the informants’ reports and did not have a professional’s assessment of the type of disorder the mothers suf-fered from. Another limitation, enforced by the low number of informants, is that there is a possible selec-tion bias in that all of the informants had had a pre-dominantly troubled childhood. People with a more harmonious childhood may have been more reluctant to participate in research, for reasons such as not hav-ing anythhav-ing in particular to report or not wanthav-ing to risk putting their mother in an unfavorable light. Interviewing children with more positive childhood experiences, and also those who have an IDD
themselves, might have given a more nuanced picture of growing up with a mother with IDD, possibly more similar to the findings in previous studies [19,21,22], where children with an IDD themselves experienced a better family life and less stigma com-pared to children without IDD. While acknowledging these limitations, it is still the hardships that need to be known to occupational therapists and others in the care system.
The informants differed in age, which means that their childhood reflected societal situations during several decades. This added richness to the data, as did the variation in several factors pertaining to the family constellations, such as absent/present father, having siblings or not, being the oldest or the young-est among siblings, and having a supportive extended family or not. Furthermore, three of the women were interviewed twice, a procedure which is believed to promote life-story narration.
The trustworthiness of the findings is based on the transferability, dependability, and confirmability of the results [46]. The dependability was maintained by using all available informants’ life stories and also by the involvement of all the authors in the interpret-ation of the data. The confirmability was enhanced by providing detailed information of the recruitment of the informants and by detailing the data analyzing process. The triangulation procedures also promoted confirmability, in displaying the informants’ recogni-tions of their stories and the professionals’ reflecrecogni-tions on the applicability of the findings in Sweden today. The professionals agreed that the living conditions described by the informants still exist today. The transferability of the findings is up to the reader to evaluate [46]. The findings were based on only four informants, and the study was retrospective, which warrants caution with respect to transferability. Although the low number of informants presents sev-eral methodological problems in terms of selection bias and limited transferability, their stories have highlighted real-life scenarios, possibly shared by sev-eral children in today’s society.
Conclusion
The findings from this narrative study must be seen against the fact that the study was retrospective and that the informants grew up in a societal context with regulations and childcare systems that differ some-what from that of today. For example, many children in Sweden are these days cared for by preschool teachers in kindergartens and therefore visible to the
staff there. Still, according to the interviewed experts, the depicted scenarios are valid today. The findings can thus stimulate those working with families with maternal developmental disorder to more effectively detect the situation of the children growing up in this situation and their sometimes difficult everyday life. The study has also hopefully contributed to a greater understanding of the need for support that embraces both the mothers’ ambitions and abilities to take care of the children and the children’s needs for specific support. Support measures for the children may con-tain, for example, adapted information of the kind the informants wished for. The children are naturally also benefitted by adequate support to the mothers. Occupational therapists, in collaboration and commu-nication with other professionals, may play an important role in that support, not least in guiding the mothers in how to manage the household and take care of the children.
Acknowledgements
Warm expressions of gratitude are conveyed to the four informants in the interviews.
Disclosure statement
The authors declare they have no conflicts of interest.
References
[1] Collings S, Llewellyn G. Children of parents with intellectual disability: facing poor outcomes or faring okay?. J Intellect Dev Disabil. 2012;37:65–82. [2] L€ofgren-Mårtenson L. Sexualitet och k€arlek. In:
S€oderman L, Antonson S, editors. Nya
Omsorgsboken. Malm€o: Liber; 2011. p. 185–192. [3] Weiber I, Berglund J, Tengland PA, et al. Children
born to women with intellectual disabilities– 5-year incidence in a Swedish county. J Intellect Disabil Res. 2011;55:1078–1085.
[4] Odom SL, Horner RH, Snell ME, et al. The con-struct of developmental disabilities. In: Odom SL, editor. Handbook of developmental disabilities. New York: Guilford Press; 2007. p. 3–14.
[5] Brown I, Wehmeyer ML, Shogren KA. What is
meant by the terms intellectual disability and devel-opmental disabilities? In: Wehmeyer ML, Brown I, Percy M, Shogren KA, Fung WLA, editors. A Comprehensive guide to intellectual and develop-mental disabilities. 2 ed. Baltimore (MD): Brookes Publishing; 2017. p. 3–18.
[6] Bach M. Changing perspectives on intellectual and developmental disabilities. In: Wehmeyer ML, Brown I, Percy M, Shogren KA, Fung WLA, editors.
A comprehensive guide to intellectual and
developmental disabilities. 2 ed. Baltimore [MD]: Brookes Publishing; 2017. p. 35–45.
[7] National Board of Health and Welfare. Barn som har f€or€aldrar med utvecklingsst€orning. Stockholm: Socialstyrelsen; 2007.
[8] Llewellyn G, McConnell D, Mayes R. Health of
mothers with intellectual limitations. Aust N Z J Public Health. 2003;27:17–19.
[9] Llewellyn G, McConnell D. Mothers with learning difficulties and their support networks. J Intellect Disabil Res. 2002;46:17–34.
[10] Mayes R, Llewellyn G. Mothering differently: narra-tives of mothers with intellectual disability whose children have been compulsorily removed. J Intellect Dev Disabil. 2012;37:121–130.
[11] Llewellyn G. Parents with intellectual disability and their children: advances in policy and practice. J Policy Pract Intellect Disabil. 2013;10:82–85.
[12] Pixa-Kettner U. Parents with intellectual disability in germany: results of a nation-wide study. J Appl Res Intellect Disabil. 1998;11:355–364.
[13] McConnell D, Feldman M, Aunos M. Parents and parenting with intellectual disabilities: an expanding field of research. J Appl Res Intellect Disabil. 2017; 30:419–422.
[14] Booth T, Booth W, McConnell D. The prevalence and outcomes of care proceedings involving parents with learning difficulties in the family courts. J Appl Res Int Dis. 2005;18:7–17.
[15] Tossebro J, Midjo T, Paulsen V, et al. Prevalence, trends and custody among children of parents with intellectual disabilities in Norway. J Appl Res Intellect Disabil. 2017;30:533–542.
[16] McConnell D, Llewellyn G, Mayes R, et al.
Developmental profiles of children born to mothers with intellectual disability. J Intellect Dev Disabil. 2003;28:122–134.
[17] Emerson E, Brigham P. The developmental health of children of parents with intellectual disabilities: cross-sectional study. Res Dev Disabil. 2014;35: 917–921.
[18] Granqvist P, Forslund T, Fransson M, et al. Mothers with intellectual disability, their experiences of mal-treatment, and their children’s attachment represen-tations: a small-group matched comparison study. Attach Hum Dev. 2014;16:417–436.
[19] Booth T, Booth W. Against the odds: growing up with parents who have learning difficulties. Ment Retard. 2000;38:1–14.
[20] Wołowicz-Ruszkowska A, McConnell D. The experi-ence of adult children of mothers with intellectual disability: a qualitative retrospective study from Poland. J Appl Res Intellect Disabil. 2017;30: 482–491.
[21] Faureholm J. Children and their life experiences. In: Llewellyn G, Traustadottir R, McConnell D, Sigurjonsdottir HB, editors. Parents with intellectual disabilities – past present and futures. Chichester, West Sussex: John Wiley & Sons Ltd; 2010.
[22] Starke M. Young adults with intellectual disability recall their childhood. J Intellect Disabil. 2011;15: 229–240.
[23] Lindblad I, Billstedt E, Gillberg C, et al. An inter-view study of young adults born to mothers with mild intellectual disability. J Intellect Disabil. 2013; 17:329–338.
[24] Brown DW, Anda RF, Tiemeier H, et al. Adverse childhood experiences and the risk of premature mortality. Am J Prev Med. 2009;37:389–396.
[25] Chartier MJ, Walker JR, Naimark B. Separate and cumulative effects of adverse childhood experiences in predicting adult health and health care utilization. Child Abuse Negl. 2010;(34:):454–464.
[26] Horwitz AV, Spatz Widom C, McLaughlin J, et al. The impact of childhood abuse and neglect on adult mental health: a prospective study. J Health Soc Behav. 2001;42:184–201.
[27] Hovens JGFM, Giltay EJ, Wiersma JE, et al. Impact of childhood life events and trauma on the courses of depressive and anxiety disorders. Acta Psychiatr Scand. 2012;126:198–207.
[28] Weiber I, Berglund J, Tengland PA, et al. Social and health care professional’s experiences of giving sup-port to families where a mother has an intellectual disability: Focusing on the children. J Policy Pract Intellect Disabil. 2014;11:293–301.
[29] Weiber I, Eklund M, Tengland PA. The
Characteristics of Local Support Systems, and the Roles of Professionals, in Supporting Families where a Mother has an Intellectual Disability. J Appl Res Intellect Disabil. 2016;29:197–210.
[30] Taylor SJ, Bogdan R. Introduction to qualitative research methods: a guidebook and resource. New York: Wiley; 1998.
[31] Lemley CK, Mitchell RW. Narrative inquiry: Stories lived, stories told. In: Lapan SD, Quartaroli MT, Riemer FJ, editors. Qualitative research: an introduc-tion to methods and designs. San Francisco, CA: Jossey-Bass, Inc; 2011. p. 215–41.
[32] Reissman CK. Narrative methods for the human sci-ences. London: SAGE; 2008.
[33] Atkinson R. The life history interview. Thousand Oaks: SAGE University; 1998.
[34] Neuendorf KA. The content analysis : guidebook. London: SAGE; 2002.
[35] Pipping L. K€arlek och stålull: Att v€axa upp med en utvecklingsst€ord mamma. Stockholm: Gothia; 2004. [36] Edwinson Månsson M. The value of informing
chil-dren prior to investigations and procedures. Doctoral dissertation, Lund University, Lund, Sweden; 1992.
[37] Seipel MO. Social consequences of malnutrition. Soc Work. 1999;44:416–425.
[38] Umb-Carlsson €O. Living conditions of oeople with intellectual disabilities [Elektronisk Resurs]: a study of helth, housing, work, leisure and social relations in a Swedish county population. Uppsala: Acta Universitatis Upsaliensis; 2005.
[39] Desrosiers L, Laporte L. Occupational challenges of mothers with borderline personality disorder world federation of occupational therapists; 22 May; Cape Town, South Africa; 2018.
[40] Tymchuk AJ. Predicting adequacy of parenting by people with mental retardation. Child Abuse Negl. 1992;16:165–178.
[41] Ronai CR. On loving and hating my mentally
retarded mother. Ment Retard. 1997;35:417–432. [42] Fernqvist S. Negotiating parenthood: experiences of
economic hardship among parents with cognitive difficulties. J Intellect Disabil. 2015;19:215–229. [43] Adolfsson P, Lindstedt H, Janeslatt G. How people
with cognitive disabilities experience electronic plan-ning devices. NRE. 2015;37:379–392.
[44] Hallgren M, Nygard L, Kottorp A. Technology and everyday functioning in people with intellectual
dis-abilities: a Rasch analysis of the Everyday
Technology Use Questionnaire (ETUQ). J Intellect Disabil Res. 2011;55:610–620.
[45] Berk LE. Child development. Boston: Pearson; 2009. [46] Lincoln YS, Guba EG. Naturalistic inquiry. Beverly
