COMPLETED RESEARCH

Parent/child health and wellbeing

child_in_highchair

Becoming a mother: the experiences of women with intellectual disabilities (2009)

Developmental Profiles of Children Born to Mothers with Intellectual Disability (2003)

Health of Mothers with Intellectual Limitations (2003)

Being a Parent with Intellectual Disability: A Battle Against the Odds (1994)

Intellectual Disability and Parenting: A Shared Experience

Multiple risk families: the first year of life


Becoming a mother: the experiences of women with intellectual disabilities (2009)

Mayes, R. (in press). Becoming a mother: The experience of women with intellectual disabilities.Australian Journal of Occupational Therapy.

Mayes, R., Llewellyn, G., & McConnell, D. (submitted). “That’s who I choose to be”: The mother identity for women with intellectual disabilities.Women’s Studies International Forum.

Mayes, R., Llewellyn, G., & McConnell, D. (2008). Active negotiation: mothers with intellectual disabilities creating their social support networks.Journal of Applied Research in Intellectual Disability, 21(4), 341-350.

Mayes, R., Llewellyn, G., & McConnell, D. (2006). Misconception: The experience of pregnancy for women with intellectual disabilities.Scandinavian Journal of Disability Research, 8(2&3), 120-131.


Background

The topic of women with intellectual disabilities as mothers has been explored in a discrete literature within the larger field of disability studies. In research predominantly conducted by disability scholars, concerns include:

  • whether or not these women can adequately care for their children;
  • how best mothering skills might be taught to women with intellectual disabilities.

Scholars have turned their attention from mothering as an individual pursuit to mothering within a social context, focusing on those in a mother’s life who may aid or abet her mothering.

The focus of this research is largely about the tasks and activities women perform while caring for their children. Issues of gender and identity as they influence mothering by women with intellectual disabilities are yet to be considered. The meaning of motherhood for women with intellectual disabilities, and how they assume the mother identity are yet to be addressed. No study to date has examined the phenomenon of becoming a mother for women with intellectual disabilities.

Aim

The aim of this phenomenological study was to describe the phenomenon of becoming a mother for women with intellectual disabilities.

Findings and Implications

Seventeen women with intellectual disabilities were interviewed during their pregnancies, and accounts of their lived experiences of becoming a mother were sought.

Three essential elements of the phenomenon were identified:

  • “recognising I am pregnant”
  • “understanding my importance in my baby’s life”
  • “creating a family network for my baby”.

The findings of this study make three significant theoretical contributions.

  1. Women with intellectual disabilities, because they are women, become mothers. They dispel the myths that they are asexual or sexually promiscuous, passive and dependent.
  2. Women assume the mother identity in relation to others in their lives. In developing a mother identity it is not only the woman and her baby who are involved. Others affirm her central place in her baby’s life, thereby affirming her identity as mother of her baby.
  3. Women negotiate support for the tasks of caring for her baby. In doing so, however each woman differentiates how she is involved in her baby’s life from the way in which others are involved. Her role and identity in her baby’s life is as mother.

Related Publications

Llewellyn G, McConnell D, Honey A, Mayes R & Russo D. (2003). Promoting health and home safety for children of parents with intellectual disability: A randomised controlled trial. Research in Developmental Disabilities, 24(6), 405-431.

McConnell, D., Llewellyn, G., Mayes, R., Russo, D., & Honey, A. (2003). Developmental Profiles of Children Born to Mothers with Intellectual Disability Journal of Intellectual and Developmental Disability, 28(2), 1-14.

Llewellyn G, McConnell D & Mayes R (2003). Health of mothers with intellectual limitations. Australian and New Zealand Journal of Public Health, 27(1), 17-19.

Llewellyn, G., McConnell, D., & Honey, A. (2001). Healthy and Safe. NSW Parent-Child Health and Wellbeing Research and Development Project. Report to the NSW Department of Ageing, Disability and Home Care Services. University of Sydney.

Tymchuk, A.J., Llewellyn, G., & Feldman, M., (1999). Parenting by persons with intellectual disabilities: A timely international perspective. Journal of Intellectual and Developmental Disability, 24(1), 3-6.

Llewellyn, G., McConnell, D. & Bye, R (1998) Perception of Service Needs by Parents with Intellectual Disability, Their Significant Others and their Service Workers Research in Developmental Disabilities, 19(3), 245-260.

McConnell, D., Llewellyn, G., & Bye, R. (1997). Providing services to parents with intellectual disability: Parent needs and service constraints. Journal of Intellectual and Developmental Disability, 22(1), 5-17.

Llewellyn, G., & Brigden, D. (1995). Factors affecting service provision to parents with intellectual disability: An exploratory study. Australian and New Zealand Journal of Developmental Disabilities, 20, 97-112.

Llewellyn, G. (1994). Generic Family Support Services: Are Parents with Learning Disability Catered For? Mental Handicap Research, 7(1), 64-77.

Llewellyn, G. (1990). People with Intellectual Disability as Parents: Perspectives from the Professional Literature Australia and New Zealand Journal of Developmental Disabilities, 16(4), 369-380.



Development Profiles of Children Born to Mothers with Intellectual Disability (2003)

McConnell, D., Llewellyn, G., Mayes, R., Russo, D., & Honey, A. (2003) Developmental Profiles of Children Born to Mothers with Intellectual Disability Journal of Intellectual and Developmental Disability, 28 (2) 1-14.

Background

With increasing numbers of adults with intellectual disability choosing to have children, concern remains as to the health and wellbeing of their offspring. One reason for this is the presumption that a causal link exists between parental intellectual disability and developmental delay in their children. Such parents are thought incapable of providing the stimulation children need to develop 'normally', to the extent that when a parent is identified as intellectually disabled, potential developmental delay of their child or children is often treated as a child protection concern.

Studies testing this hypothesis to date have reported findings of substantial variation with most children meeting age-norm expectations. Why some children experience difficulties and others do not has yet to be explained, though a number of variables are thought to play a part: genetic anomalies; antenatal and birth complications; parental health (physical and mental) and social support; the quality of a parent's own upbringing; the adequacy of support services; and the 'resilience' of the child.

Aim

This study aimed to contribute to the process of better understanding marked differences in the developmental status of children of parents with intellectual disability by:

  1. assessing the developmental status of pre school aged children (i.e. 6 years and under) born to mothers with intellectual disability, and
  2. examining the relationship between developmental status and selected child, maternal and home/environment characteristics.

Method

Data was gathered in the course of a randomized trial of a child health and home safety program for parents with special learning needs. The development of 37 children, each being the youngest in their respective families, was assessed by two occupational therapists and a registered psychologist. A number of assessment tools were administered and a combination of standardized measures and structured interviews employed. Data was analysed using the Statistics Package for the Social Sciences (SPSS). Descriptive statistics were computed and a series of univariate analyses conducted to examine the relationship between the dependent and independent variables.

Findings and implications

The developmental status of the children varied markedly in physical, self-help, academic, social and communication domains. Notwithstanding, in all developmental domains, between 35% and 57% of children showed a delay of at least three months.

No statistically significant correlation was found between developmental status and characteristics of the mother or home/environment. This is significant given the high rate of physical and sexual abuse experienced by the mothers, and their poor health relative to Australian norms. Such a finding suggests that the current emphasis on maternal and home/environment characteristics may be misplaced. It also implies that inadequate stimulation on the part of parents cannot be assumed. To do so is prejudicial and to cast assumed developmental delay as a child protection concern discriminatory.

Possible organic pathology was the only potentially explanatory factor that emerged from this study for the observed variation in child development. Indicators used to identify organic pathology were as follows:

  • the child having a diagnosed medical condition such as epilepsy and/or was regularly being seen by a specialist medical practitioner;
  • the pregnancy being traumatic/difficult to the point of requiring hospitalization eg., due an accident/fall, Rubella infection or pre-eclampsia;
  • premature birth (gestation period < 37 weeks) and low birth weight (< 2500 grams);
  • a complicated birth that required emergency c-section, for example, due to anoxia;
  • the child being admitted to intensive care after birth and/or having to experience an extended hospital stay (> 2 weeks); and
  • since birth, the child having undergone a long hospital stay due to a serious medical condition, for example, related to heart or kidney function.

In this study sample, nearly half of the children were identified with one or more indicators of (possible) organic pathology. These children were also delayed in all of their developmental milestones. Children with no evidence of organic pathology were developing normally with the exception of an average slight delay in their communication skills.

The extent to which this high incidence of suspected pathology can be generalized is uncertain. Ideally a prospective study with a larger sample size and where the mothers are recruited as early as possible in pregnancy will provide the opportunity to obtain more sound epidemiological data and explore potential influences on good birth outcomes. Examining the type, quality and suitability of antenatal and maternity services for mothers with intellectual disability and exploring how these mothers care for themselves during pregnancy may lead to a better understanding of how best to prevent the developmental delay identified to date in studies of parents with intellectual disability.

This study was funded under the Best Practice Parenting Education Initiative of the Commonwealth Department of Family and Community Services and the NSW Ageing and Disability Department, August 1998 - November 2000.


Health of Mothers with Intellectual Limitations (2003)

Llewellyn, G., McConnell, D., & Mayes, R. (2003) Health of Mothers with Intellectual Limitations Australian and New Zealand Journal of Public Health, 27 (1), 17 - 19.

Background

A clear connection exists between a population group's health status and socio-economic circumstances. Parents with an intellectual disability can often be found in several of those groups that suffer marked socio-economic disadvantage - single parents, those who are unemployed, and those with a disability - and thus carry the risk of having poor health.

Rather than addressing these more fundamental issues however, policy and social programs have tended to support parents with intellectual disability and their children through the provision of parent education programs. This is surprising given the significant impact that early life experiences have on lifetime health and well-being, and the recognized relationship between living in impoverished circumstances and poorer health outcomes for adults and children.

Aim

In the absence of data on the health of Australian parents with intellectual disability this study was undertaken to investigate parental health status and health behaviours of parents referred to a home learning parent education program.

Method

The health status and health behaviours of 45 parents with special learning needs were assessed using structured interviews based on the Short Form 36 Question Health Survey (SF-36). Four additional health questions covering alcohol and cigarette consumption, exercise and participation in fun and relaxing activities were also included.

Findings and implications

Parents reported significantly worse health on all scales of the SF-36 compared to the general Australian population. Further, when controlling for socio-economic status, participants' reported health was significantly worse on seven of the eight health subscales. Single parents reported significantly worse health on the Physical Functioning and Mental Health subscales only. Surprisingly, parents in couple families reported significantly worse health on all but the two subscales of Role Physical and Social Functioning. Those parents who reported engaging in regular exercise and fun and leisure activities reported better health on four and one subscales of the SF-36 respectively.

Parents with intellectual disability are particularly vulnerable to poor health status. Given the association between early experiences of children and their health status in adulthood, the children of parents such as those who participated in the study may well be at risk for poorer health and adverse later life outcomes.

Factors such as shortfalls in system and practitioner expertise, and doubt as to the ability of these parents to learn and overcome parenting deficiencies mean that there is no simple way of addressing these core issues.

Home visiting programs however provide one avenue where an integrated approach to alleviating the difficulties experienced by parents with intellectual disability can be implemented. An urgent need exists for these program developers and service providers to pay particular attention to parent health status given the observed poor health status of parents and the associated high risk of poor long term health status for their children.


Being a Parent with Intellectual Disability: A Battle Against the Odds (1994)

Llewellyn, G. (1994) Being a Parent with Intellectual Disability: A Battle Against the Odds Community Bulletin, 18 (1), 9 - 13.

Written at a time when there was almost no Australian research about parents with intellectual disability, this paper provides a forum for the views of some of these parents to be aired. What is the shared experience of intellectual disability and parenting like?

A predominant theme quickly emerged: that parenting for those with intellectual disability is a battle against the odds. Factors such as restricted life opportunities and the perceived and often transferred expectations that people with learning difficulties are incapable of fulfilling certain adult roles make the task of parenting more difficult.

Parents with intellectual disability also have to contend with unfounded presumptions that openly challenge their right to have a child. These myths are: that people with intellectual disability are incapable of learning adequate parenting skills, and that they will give birth to disabled children, have more children than other parents, and neglect or abuse their children.

The extent to which parents carry on satisfactorily with their family life depends directly on the support or opposition they experience. Parents involved in this study preferred to seek help from partners and family, and only occasionally turned to professionals for assistance.

Support given, whether formally and informally, will be most effective if:

  • it is provided in the spirit of accepting that young adults with intellectual disability share the drive to procreate and dream of parenthood;
  • it includes sex and relationship education early in schools;
  • it allows adults with intellectual disability to talk about parenting, including their rights and responsibilities, not just practical matters;
  • parenting education and home help is tailored to the specific needs of these parents; and
  • if it recognises that no parent innately knows how to be a 'good' parent.

Service providers also need to practice being responsive to parents' needs; to find out how parents perceive their needs and then offer programs which:

  • value parent input and support their decision-making;
  • regard the parents as adult learners;
  • provide opportunities for relationship building;
  • provide informal support for families and for professionals; and
  • promote and advertise successful parent and child outcomes

Intellectual Disability and Parenting: A Shared Experience

Llewellyn, G. (1994) Intellectual Disability and Parenting: A Shared Experience A thesis submitted in fulfilment of the requirements for the degree of Doctor of Philosophy. University of Sydney.

This study is set within the context of increasing opportunities for adults with intellectual disability to become parents. Currently there is no theoretical foundation on which to base policy and practice about parenting for intellectually disabled parents. The purpose of this study was to develop a theoretical formulation of the shared experience of intellectual disability and parenting.

This study differs from previous research on parents with intellectual disability in four major aspects. First, the study sample are all parents who live in the community without surveillance by child welfare and protection authorities. Second, the parents' views on their experiences of parenting constitute the empirical data. Third, the parents' everyday parenting experiences are explored from a sociocultural perspective. Fourth, a substantive grounded theory (Glaser & Strauss, 1967) of parenting for people with intellectual disability is developed from the parent viewpoint.

The theoretical orientation of the study is derived from symbolic interactionism (Blumer, 1969). The study methods of ethnography (Agar, 1980; Spradley, 1979) and grounded theory (Glaser & Strauss, 1967) were chosen in keeping with this orientation. Ten parents with intellectual disability (six mothers and four fathers) participated in the study. The parent viewpoint was sought by indepth interviews and participant observation and recorded in field notes and a field work journal. Data analysis procedures were derived from the work of Strauss and Corbin (1990).

Eight conceptual categories of parents' experiences were generated from the empirical data: Experiencing Competing Demands, Holding Views on Parenting, Experiencing the Presence of Others, Getting to Know the Child, Managing the Child, Learning to Parent, Determining Others' Involvement and Implementing Parental Views.

The conceptual relationships within and between these categories yielded four theoretical constructs as follows: Assessing and Balancing, Perceived Questioning, Managing Parenting and Asserting Parenthood.

The theoretical formulation of the parenting experience - Building Family Life Against Outside Odds - was derived from the four constructs and the literature. Experience of parenting is determined by the perceived level of questioning and parents' views about their family life course. There are four potential parenting contexts: family life on course, questioning perceived as tolerable; family life on course, questioning perceived as high; family life off course, not critically so; and family life off course and under threat.

The methods used in this study provide a model for exploring the views of people with intellectual disability. The results of the study offer empirically grounded information on which to base policy and practice with intellectually disabled parents. In the future, the four theoretical constructs will be used to develop indices of parental concerns and learning needs. The theoretical formulation of the parenting experience will be elaborated with intellectually disabled parents with older children and those whose parenting is under threat from child welfare and protection authorities. Potentially, the theoretical formulation can be used to examine the parenting experience of parents other than those with intellectual disability.


Multiple risk families: the first year of life

Project team

Professor David McConnell
Prof Gwynnyth Llewellyn
Prof Bryanne Barnett (UNSW, SWSAH)
Kathryn Delaney

Background

The most vulnerable families are those who, with limited internal (coping) resources, are exposed to multiple environmental risk conditions. Families headed by parents with intellectual disability (ID) are multiple risk families. With intellectual impairment (including borderline ID, IQ<79) and chronically poor health, these parents experience persistent poverty, social isolation and service systems that are poorly equipped to accommodate their support needs. The high incidence of developmental delays observed in their children, in the range of 30-50%, seems to support a bleak outlook. However, many parents with ID provide safe and nurturing home environments, and many children are healthy and keeping pace with their peers. Given the multiple risk status of these families, determinants of child and parent resilience warrant investigation.

Aim

The primary aims in this study were:

  1. To chart the health and developmental trajectories of infants born to intellectually disabled mothers through their first year of life.
  2. To examine the relationship between birth outcomes, parental care and infant health and development and identify conditions (i.e. protective factors) that promote healthy infant development under multiple risk conditions.
  3. To chart the health trajectories of intellectually disabled mothers.
  4. To investigate adaptation to parenthood including the influence of their own upbringing, informal learning/support and utilisation of services.

Method

A cohort of 28 mothers who participated in a previous study of prenatal care and birth outcomes agreed to take part. These mothers were interviewed twice, usually in their own homes, and when their babies were 6 to 12 months of age. The interviews incorporated standard measures and open ended questions to explore each mother’s experience and adaptation. Data collected included infant health and development; maternal health, warmth and responsivity, social support, care experiences; and overall home environment.

Findings and Implications

This project was a cross-disciplinary collaboration, drawing together expertise in intellectual disability, perinatal and infant health. This multiple risk parent group has been identified as problematic to prenatal, early childhood clinic and family services due to lack of attendance, non-compliance and requiring intensive interventions. Some of the key findings include:

  • No significant relationship between developmental status of the child and maternal IQ was found.
  • A disproportionate number of the infants in the cohort were below the 50th percentile for length, weight and head circumference, at 6-8 weeks and 6-8 month follow-ups.
  • 40% of the infants demonstrated a delay. of at least one month. across 4 out of 5 developmental domains. Delays were most common in the physical domain.
  • Infants who had the poorest birth outcomes were also those most likely to be ‘lagging’ in their development.

The findings of this study, and the preceding study of prenatal care and birth outcomes, suggest that attention needs to be given to improving the health and health care of expectant mothers with intellectual disability. These findings supported a successful application to the Australian Government, under the Stronger Families and Communities Strategy (2005-2009), to implement a national strategy for young children of parents with learning difficulties – Healthy Start (www.healthystart.net.au). This national strategy, in partnership with the Parenting Research Centre (Victoria), included the development and evaluation of a health care resource, called Healthy Start for Me and My Baby, for pregnant women with learning difficulties.

Related publications

Llewellyn G, McConnell D, Honey A, Mayes R & Russo D. (2003). Promoting health and home safety for children of parents with intellectual disability: A randomised controlled trial. Research in Developmental Disabilities, 24, 405-431.

McConnell, D., Llewellyn, G., Mayes, R., Russo, D., & Honey, A. (2003) Developmental Profiles of Children Born to Mothers with Intellectual Disability Journal of Intellectual and Developmental Disability, 28(2), 1-14.

Llewellyn G, McConnell D & Mayes R (2003). Health of mothers with intellectual limitations. Australian and New Zealand Journal of Public Health, 27, 17-19.

Llewellyn, G., McConnell, D., & Honey, A. (2001) Healthy and Safe.NSW Parent-Child Health and Wellbeing Research and Development Project.Report to the NSW Department of Ageing, Disability and Home Care Services. University of Sydney.

Tymchuk, A.J., Llewellyn, G., & Feldman, M., (1999) Parenting by persons with intellectual disabilities: A timely international perspective. Journal of Intellectual and Developmental Disability, 24(1), 3-6.

Llewellyn, G., McConnell, D. & Bye, R (1998) Perception of Service Needs by Parents with Intellectual Disability, Their Significant Others and their Service Workers Research in Developmental Disabilities, 19(3), 245 - 260.

McConnell, D., Llewellyn, G., & Bye, R. (1997). Providing services to parents with intellectual disability: Parent needs and service constraints. Journal of Intellectual and Developmental Disability, 22(1), 5-17.

Llewellyn, G., & Brigden, D. (1995). Factors affecting service provision to parents with intellectual disability: An exploratory study. Australian and New Zealand Journal of Developmental Disabilities, 20, 97-112.

Llewellyn, G. (1994) Generic Family Support Services: Are Parents with Learning Disability Catered For? Mental Handicap Research 7(1), 64 - 77.

Llewellyn, G. (1990). Parents with an intellectual disability: Perspectives from the literature. Australia and New Zealand Journal of Developmental Disabilities, 16(4), 369-380.


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