COMPLETED RESEARCH
Parent/child health and wellbeing
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
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:
- assessing the developmental status of pre school aged children (i.e. 6 years and under) born to mothers with intellectual disability, and
- examining the relationship between developmental status and selected child, maternal and home/environment characteristics.
Methodology
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.
Methodology
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.