Journal Articles - peer reviewed

Purpose: The purpose of this study was to investigate parent implementation of home based therapy regimens, and the relationship between implementation and family-level outcomes.

Method: A stratified (by child age group) random sample of 538 families raising children with disabilities in Alberta, Canada took part. Participants completed the Family Life Survey, which incorporated child and family measures, and items measuring parent implementation of home based therapy regimens.

Results: Parents are more likely to implement therapeutic regimens when these are 'enfolded' into other daily activities and routines. If parents have to 'find a slot' in the daily routine to implement therapy, they will sacrifice personal leisure, participation in paid work, and time spent with other family members. Greater parent sacrifices/ trade-offs was negatively associated with family well-being.

Conclusion: As a general rule, children do well when their families do well, and families do well when they have the resources they need to juggle work and family and care demands. Recruiting parents as interventionists can tax family resources. Rehabilitation professionals must weigh up the pros and cons of parent-mediated intervention, and look to enfolding therapy into the everyday family routine.

The purpose of this study was to investigate the resilience displayed by families raising children with disabilities and behavior problems. The question is why do some families do well when others, exposed to similar stressors, struggle to keep their family life running? A stratified (by child age group) random sample of 538 families raising children with disabilities in Alberta, Canada took part. Participants completed the Family Life Survey, which incorporated measures of child behavior problems, social-ecological resources and family-level 'outcomes'. Families raising children with disabilities and behavior problems 'do well' under conditions of high social support and low financial hardship. In contrast, families with low levels of social support and high levels of financial hardship typically struggle, even when the number or intensity of child behavior problems is low. The study findings are consistent with the view that 'resilience' has more to do with the availability and accessibility of culturally relevant resources than with intrinsic, individual or family factors. With respect to family-level outcomes, strengthening social relationships and ameliorating financial hardship may be more important than behavior modification.

This paper explores resilience in families of children with disabilities in the Province of Alberta, Canada. Utilizing Ungar's social ecology of resilience, we present an analysis of 78 responsive interviews drawn from a three-year multimethod study. We show that families who reported doing well were able to conduct their lives with a 'business as usual' approach to their daily lives, in contrast to families who were struggling and had reported that disability had overtaken their day-to-day routines and activities. Exploring factors that led to these experiences, we show the importance of social context in understanding family 'well-doing' in families with disability. The policy and program implications of our findings are discussed.

This selective, critical literature review synthesizes recent research exploring disability-based disparities in the subjective well-being and living conditions of youth in high-income countries. Compared with their non-disabled peers, disabled youth report lower levels of happiness, lower global life satisfaction and higher rates of suicidal ideation. Emerging evidence suggests that the relatively poor subjective well-being of disabled youth reflects, at least in part, differential access to material and social resources rather than the presence of chronic conditions or impairment per se. These findings indicate that disability-based disparities in youth subjective well-being are socially patterned and preventable.

The aim of this review is to synthesise findings from research about the experiences of people with learning disabilities who have faced arrest and jail time. After an extensive search of the literature, four relevant articles were found. The first-person accounts presented in these four studies were pooled, and a thematic analysis was undertaken. Three common themes were identified: (i) study participants did not understand what was happening to them, or why, (ii) they felt alone, and they did not know where to turn, or to whom for support and (iii) they were uncertain about what to say or do. Overall, the findings raise concerns about the treatment of people with learning disabilities in the criminal justice system and their access to procedural justice. Further research is needed to improve understanding of their experiences and support needs. There is unequivocal evidence that persons with learning disabilities are over-represented in the prison population. To date however, few studies have investigated their first-hand experience, including their experiences of being interrogated, of standing trial, serving time and transitioning back into the community. The purpose of this review is to draw what insights we can from the limited available data and to identify directions for future research.

Family-centered care (FCC) has been linked with improved parent and child outcomes, yet its implementation can be challenging due to family, professional, organizational and systemic factors and policies. This study aims to increase knowledge and understanding of how families with children with autism spectrum disorder (ASD) experience FCC in Alberta, Canada. 152 parents with a child with ASD completed the Measure of Processes of Care, separately for each utilized service sector, and 146 professionals working with persons with ASD completed the Measure of Processes of Care - Service Providers. Additionally, in-depth interviews were conducted with a sub-sample of 19 parents, purposefully sampled for diversity in child and family characteristics. Data were collected in 2011. Descriptive and inferential statistics were used to analyze quantitative data. Interview transcripts were analyzed using grounded theory constant comparison methods, yielding a data generated theoretical model depicting families' experiences with FCC over time and across service sectors. There were no statistically significant differences in FCC scores across service sectors, but statistically significant differences in FCC scores between parents' and professionals' were found. Qualitative data revealed positive experiences and perceptions of receiving FCC from professionals "on the ground" across sectors, but negative experiences and perceptions of FCC at the systems level (i.e., administration, funders). These broad experiences emerged as a core theme "System of Exclusion", which integrated the key themes: (1) "The Fight", (2) "Roles and Restrictions of Care", and (3) "Therapeutic Rapport". Professionals and service providers can use findings to ensure that services reflect current conceptualizations of FCC, and decision and policy makers can use findings to recognize systemic barriers to implementing FCC and inform policy change.

This study investigated the experience and perceived outcomes of a behavioural family intervention, standard stepping stones triple P (SSTP), for parents of children with autism. An indepth, prospective, mixed-methods, multiple case-study design was employed. Parent participants and SSTP practitioners took part. Participation in SSTP was consistently associated with improved parental self-efficacy, and was also associated with improved parental psychological well-being and decreased perceived need for behavioural services for some families. Three key themes emerged from the qualitative interview data, reflecting changes attributed to participation in SSTP: (1) changes in the "attribution of cause" of misbehaviour, (2) "Who's the boss?" reflecting a change to parents feeling more in charge of their child's behaviour, daily routines and choices, and (3) "Rewarding is rewarding!" reflecting appreciation of a positive approach to behaviour management. Practitioners discussed their impressions of appropriate participants, timing, structure, and session preferences for SSTP, and implications related to the professional qualifications of practitioners delivering SSTP. Clinical implications for the use of SSTP with families of children with autism are discussed.

Summary: Parent support needs and family support service (FSS) outcomes were investigated. A total of 923 parent participants were recruited through 20 community-based FSS providers in Alberta, Canada. Participants completed a survey, incorporating well validated child, parent and family outcome measures, a minimum of 8-12 weeks after utilizing their FSS.

Findings: Overall, parent need satisfaction was high. However, low socio-economic status, English as a second language, parental disability or chronic health condition, and child disability or chronic health condition were associated with lower levels of parent need satisfaction. Higher levels of need satisfaction were linked to lower levels of parenting stress and more positive parent-child interactions. These, in turn, were linked to more positive family functioning and fewer child difficulties.

Applications: Mediation analysis and qualitative findings suggest that family support services are making a positive difference by creating points of 'connection', including opportunities for informal learning and peer-support.We argue that the informal, 'social networking' role of family support services should be valued alongside evidence-based parenting training programs.

Parents with cognitive impairments (CI) are overrepresented in child custody cases and their children are at risk for adverse outcomes. Ecological-transactional researchers propose that child outcomes are a function of the interaction of multiple distal, intermediate, and proximal risk and resilience factors. This study tested the fit of, and hypotheses from, an interactional model proposed by Feldman (2002) in a child protection sample of parents with CI (Canadian Incidence Study of Reported Child Abuse and Neglect [Trocmé et al., 2003]). We found a range of child outcomes, with many children without problems. Different child outcomes were associated with different types of alleged abuse. Low parental social support and mental health issues predicted child functioning, with parental mental health mediating the relationship between social support and child outcome. Findings support an interactional view of families with parents with CI and suggest the need for comprehensive, ecologically-based family interventions to promote parent and child well-being.

The Triple P Positive Parenting Program is a multilevel system of behaviour-based parenting training and support. The aim of this study was to determine whether implementation of levels 2 and 3 of the Triple P system, designed for primary care settings, enhances parent, child and family outcomes compared with services-as-usual in Alberta, Canada. The study employed a quasi-experimental, single-blind and post-test-only design. A survey incorporating outcome measures was administered to a sample of 1296 parent-clients. A total of 923 parents responded, including 172 parents who had received a Triple P (level 2 and/or 3) intervention during the previous 12 weeks. A significant interaction was found between participation in a group-based parent education programme and receipt of Triple P. Parents who participated in a group-based parent education programme, and who received a Triple P intervention reported somewhat higher levels of need satisfaction than parents who participated in a group-based parent education programme but who did not receive a Triple P intervention. No significant difference was found between Triple P and service-as-usual groups on any secondary outcome measures including parenting stress, positive interaction, family functioning and child problem behaviours.

Background: There is an unequivocal relationship between socio-economic status and child well-being. The Family Stress Model of economic hardship proposes that this relationship is mediated by financial hardship, parenting stress and parenting behaviours. In this study, the Family Stress Model is tested and analysis is extended to examine main and moderating effects of social support.

Methods: A survey incorporating well-validated measures of financial hardship, parenting stress, parenting behaviours and child difficulties was sent to 1296 parents who had utilized universal family support services in Alberta, Canada. A total of 923 parents (71%) responded. Hierarchical linear regression was employed to investigate the mediating roles of financial hardship, parenting stress and parenting behaviours, and to investigate main and moderating influences of parental social support.

Results: The study findings generally support the Family Stress Model. The relationship between socio-economic status and child difficulties was mediated by financial hardship and parenting stress. Higher levels of parental social support were associated with lower levels of parenting stress, ineffective parenting and child difficulties. Parental social support was important irrespective of parenting stress levels.

Conclusions: The study findings add to the now critical mass of data showing that parent-child health and well-being is inextricably linked with parental social support. While there is a burgeoning literature on parent training, far less research attention has been given to the development and evaluation of strategies to strengthen parents' social relationships. This is an important direction for future research.

The purpose of this paper is to present a case study of "evidence-based" program uptake and implementation. The process of integrating Triple P (levels 2 and 3) into existing family support centers in Alberta, Canada, was examined. We conducted ten individual interviews with directors, and ten group interviews, involving a total of 62 practitioners across ten Triple P pilot sites. Key findings show that there was variability in the approach and extent to which Triple P was integrated into family support centers. Five key factors impacting the integration process emerged from the interviews. These were: (1) the level of development of pre-existing support services; (2) the degree of "fit" between the Triple P program approach and existing agency practice, including the perceived suitability/unsuitability for some client groups; (3) practitioner perceptions of the adaptability of the program; (4) rules about who can and who cannot use Triple P resources; and (5) training and sustainability issues. In addition to identifying specific factors, this study was able to provide some insight as to why and how these factors were significant, thereby adding to the literature on knowledge/program dissemination processes.

Within scholarly discussion about the mother identity and how it is assumed, women with intellectual disabilities are silent. While debate has explored the experiences of many considered to mother outside the margins of the motherhood institution, the experiences of this group of women lies beyond that reach. This paper presents findings from a phenomenological study into becoming a mother for women with intellectual disabilities. The experiences of these women broaden our conceptual understanding of a well debated phenomenon and suggest that their social networks are integral to the development of the mother identity. As mother, the women with intellectual disabilities in this study aligned themselves with a key person in their social network who advocated for and supported them as the central figure in the life of their babies. Examining the experiences of perhaps the most marginalised of women serves to expand understanding of the means by which women come to understand themselves as mothers and assume the identity of mother.

Many mothers with mental health issues are caught up in the child protection system and face the prospect of having their children removed from their care. The aim of this study was to determine prevalence and outcomes for mothers with mental health issues and their children in child maltreatment cases opened for investigation in Canada. The method was secondary analysis of the Canadian Incidence Study of Reported Child Abuse and Neglect (CIS-2003) core data. This CIS-2003 contains process and outcome data on a nationally representative sample of 11,652 child maltreatment investigations. Maternal mental health issues were noted in 2,272 (19.7%) cases opened for investigation. The most common child protection concerns were neglect, emotional maltreatment and exposure to domestic violence. A significant association was found between maternal mental health issues and child maltreatment investigation outcomes, with many potentially confounding variables held constant. Broad spectrum, multi-disciplinary services are needed to support mothers with mental health issues. Effective mental health care is vital but insufficient. Addressing trauma, strengthening social relationships and alleviating poverty are also key. Systemic advocacy is needed to ensure that mothers with mental health issues can access broad spectrum supports.

The authors examined decision making and service referral in child maltreatment investigations involving children of parents with cognitive impairments using the Canadian Incidence Study of Reported Child Abuse and Neglect (CIS-2003) core-data. The CIS-2003 includes process and outcome data on a total of 1,243 child investigations (n = 1,170 weighted) in which parental cognitive impairment was noted. Employing binary logistic regression analyses, the authors found that perceived parent noncooperation was the most potent predictor of court application. Alternative dispute resolution was rarely utilized. The findings from this study highlight the need for development and utilization of alternative dispute resolution strategies, worker training, dissemination of evidence-based parent training programs, and implementation of strategies to alleviate poverty and strengthen the social relationships of parents with cognitive impairments and promote a healthy start to life for their children.

Background: Older parent-carers in Australia are the subject of increasing policy and practice attention due to concerns about their ongoing ability to care in the light of their own ageing and the ageing of their adult son or daughter. This paper examines health status and the coping strategies of a group of older Australian parents caring for an adult son or daughter with intellectual disabilities.

Method: Health status using the SF-12 (Ware, Snow, Kosinski, & Gandek, 1993), caring stress using the CADI (Nolan, Grant, & Keady, 1998), and coping strategies using the CAMI (Nolan et al., 1998) were assessed in 64 older parent-carers of adults with intellectual disabilities.

Results: The self-reported health status of this sample of older parent-carers did not differ significantly from Australian population norms, with one exception. That is, the younger parent-carers in the sample (55-64 years) reported significantly poorer mental health. Better health was associated with having a partner, a larger and close support network of family, friends and neighbours, and a lower care-load. Overall, the study participants identified both satisfaction as well as stress associated with caring, a finding that runs counter to the common perception that being a carer is overwhelmingly burdensome. Common sources of stress were feeling helpless or not in control, and poor professional support. Analysis of older parent-carers coping strategies suggests that self-reliance, whether by choice or necessity, was the norm.

Conclusions: The health status of older parent-carers may present less cause for concern than anecdotal reports suggest. That said, the strong self-reliance particularly of the older carers presents a challenge to service providers seeking to engage those whose situation appears to warrant support from the service system.

Objective: The aim of this exploratory study was to investigate the process of transition to independent accommodation for people with schizophrenia.

Method: The study employed a grounded theory approach. Multiple semi-structured and responsive e-mails and interviews were conducted with a total of seven participants currently living in independent accommodation. Through constant-comparative analysis of interview and e-mail data, three central processes were identified.

Results: The three processes are developing a sense of control; establishing a relationship between illness and place; and attaining a sense of belonging.

Conclusion: By attending to each of these three processes, mental health professionals may better assist people with schizophrenia to make a successful transition to independent accommodation, and in turn, to living well in the community.

Background: This study describes the development and trialling of the Family Life Interview (FLI), a clinical tool designed to examine sustainability of family routines

Materials and Methods: The FLI, a self-report instrument completed by a parent within a semi-structured practitioner - parent interview, was administered to 118 parents, with re-test interviews being conducted with 39 parents. Rasch analysis was used to examine scale structure, evidence for construct validity and precision of measurement of the FLI items. Logistic regression was used to explore the contribution of the FLI to predicting out-of-home placement scores.

Results: The FLI produced valid data on the sustainability of family routines. The FLI was found to be useful for predicting families at risk of seeking out-of-home placement driven by crisis.

Conclusions The FLI offers practitioners a psychometrically sound instrument designed to illuminate the particularity of each family's circumstances, critical to developing interventions for increasing the sustainability of family routines.

Aim: To investigate family caregiver perceptions of allied health professional processes of care and support in hospital following stroke, and to test an adapted version of the Measure of Processes of Care (MPOC) for its suitability of use in the stroke care setting.

Methods: The first stage involved the adaptation and refinement of the MPOC, designed to measure caregiver perceptions of processes of professional care and support across five care dimensions. The second stage involved mailing out of questionnaires to primary caregivers of stroke survivors. A total of 107 completed questionnaires were included in the analysis. The reliability of the adapted questionnaire was assessed and summary statistics were computed.

Results: The reliability of the adapted MPOC was found to be high, with good internal consistency of items within each subscale. Mean scores indicated that caregivers were most likely to report negative perceptions of the way allied health professionals engaged with and supported them, particularly in the area of information provision.

Conclusion: The number of families being affected by stroke is predicted to rise substantially in the near future. Allied health professionals have a significant role to play in supporting family caregivers. Results highlight caregiver identified areas of weakness in current clinical practice.

Mothers with learning difficulties are often isolated within their local communities. They also report low levels of social support. Social disconnection is associated with high levels of stress and poorer mental health, and in turn, adverse parenting and child outcomes. In the study reported here, a multi-site, intervention group only, repeated measures research design was employed to determine the efficacy of a group-based, adult-learning programme designed to strengthen the social relationships and improve the psychological wellbeing of mothers with learning difficulties. Thirtytwo mothers with learning difficulties completed the programme across six sites in Australia. The effects of the programmeon perceived social support and psychological wellbeing were substantially greater than established benchmarks for parent-training and family support programmes. These promising findings warrant further investigation, ideally employing a randomised-controlled trial design.

There is a small but expanding literature about the transition to adulthood for young people with intellectual disabilities. However, voices of young people with intellectual disabilities are under-represented. This study explored the perspectives of young people with intellectual disabilities on their transition to adulthood, focusing particularly on the process of negotiating autonomy within the family. This exploratory study employed a life history approach, involving six young people with mild intellectual disabilities, aged 18-25 years, and two waves of responsive interviews. First interviews explored participants' life roles, relationships and goals. Second interviews focused on the process of negotiating autonomy within the family. Three approaches to negotiating autonomy within the family were identified: defiant, passive and proactive. The particular approach taken by each participant was associated with the level of congruence between their perceived and desired levels of autonomy and parental support. The study suggests that the transition to adulthood for young people with intellectual disabilities and their parents is not inevitably conflict-ridden. Parents and professionals may support young people with intellectual disabilities through this life stage by including them in family and service decision making, and by supporting them to take on varied and valued roles and responsibilities within the family and community.

The ongoing closure of large institutions and the move to community living in many countries enables adults with intellectual disabilities to enjoy greater freedom and lifestyle choices, including establishing an intimate relationship and having children. In some countries, people with intellectual disabilities have always lived in the community and many have become parents. In others, increasing acceptance of the right to an ordinary life for people with intellectual disabilities has resulted in greater awareness that people with intellectual disability do indeed become parents, represented for example by feature films such as 'I Am Sam', which screened in many countries in 2002.

It is 9 years since a comprehensive special issue on parenting by people with intellectual disabilities was published in the international literature (Tymchuk et al. 1999). Since that time, a Special Interest Research Group (SIRG) of the International Association for the Scientific Study of Intellectual Disability (IASSID) has been established which is dedicated to the topic of parents and parenting with intellectual disabilities. The Parents and Parenting with Intellectual Disabilities SIRG, via an international listserv and a strong presence at national, regional and international conferences, has fostered communication between researchers around the world on this important topic. This has opened up opportunities for sharing knowledge internationally to work towards a better life of respect and support for parents with intellectual disabilities and their children around the world.

In late 2007, the SIRG developed a position paper on parents and parenting with intellectual disabilities. This position paper, endorsed by the IASSID executive and included in this Special Issue, represents the collaborative effort of many internationally to represent the state of knowledge about parents with intellectual disabilities and the difficulties these parents face and presents recommendations on how these difficulties might be addressed and overcome.

Background: On August 5th, 2006, the third meeting of the International Association for the Scientific Study of Intellectual Disabilities (IASSID) Special Interest Research Group (SIRG) on Parents and Parenting with Intellectual Disabilities was convened in Maastricht, The Netherlands, coinciding with the 2nd International Congress of IASSID Europe. The SIRG Parents and Parenting with Intellectual Disabilities membership includes scholars from a number of countries including the United States, Canada, England, Germany, The Netherlands, Sweden, Denmark, Iceland, Japan, Australia and New Zealand. These scholars come from a range of academic and professional disciplines, including sociology, psychology, education, nursing, social work and occupational therapy.

Method: This position paper developed by the Parenting SIRG brings into sharp relief the UN Convention on the Rights of Persons with Disabilities adopted by the General Assembly in December 2006. The convention affirms the right of persons with disabilities to marry and found a family (Article 23, (1)(a)). Further, states parties are bound to 'take effective action and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships…' (Article 23 (1)), and '…render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities' (Article 23 (2)).

Results: This position paper synthesizes messages from research about the challenges that parents labelled with intellectual disability face, and how they can be assisted in their parenting role.

Parents with intellectual disabilities, like all other parents, need support with child rearing. Often this support comes from family and friends, but in the case of parents with intellectual disabilities, they are more likely to have to rely on the service system. Research from a number of countries demonstrates that there is limited system capacity to support these parents. There are few appropriate services, and practitioners are generally ill-equipped to meet the parents' particular learning and support needs. In response, the Australian government has funded a capacity-building model known as Healthy Start: A national strategy for children of parents with intellectual disabilities, as part of its Stronger Families and Communities Strategy. This paper presents this model for building systems capacity that, in brief, addresses on the one hand, practitioner commitment, knowledge, and skills, and on the other, the parent education and community development resources needed to support parents with intellectual disability and promote a healthy start to life for their young children. The model involves the development of local leaders and practitioner networks in addition to dissemination of knowledge and innovation to support evidence-based practice. Innovative, cross disciplinary and inter-sectoral practitioner networks are at the heart of this capacity building model. These networks bridge the gap between research knowledge and practitioner knowledge as a basis for planning and coordinating local service development.

Background: This study investigates depression, anxiety and stress in pregnant women with intellectual disabilities and/or self-reported learning difficulties, and examines the association between these negative emotional states and perceived support and conflict in the women's interpersonal relationships.

Method: Eight-hundred-and-seventy-eight women attending their first antenatal visit in a socioeconomically disadvantaged area of Sydney, Australia during a 5-month period in 2002 completed a brief questionnaire to identify those with intellectual disabilities (ID) and/or self-reported learning difficulties. These 57 women were then invited to participate in a series of three interviews (two pre- and one post-partum). The second interview, which was conducted with 31 women in their third trimester, incorporated standard measures of depression, anxiety and stress, and support and conflict in interpersonal relationships, and is the subject of the research reported here.

Results: More than one-third of the women interviewed reported moderate to severe depression, anxiety and stress. A significant association was found between depression and both perceived support and conflict in interpersonal relationships. Stress was associated with conflict but not with either perceived support. Anxiety was not significantly associated with either perceived support or conflict.

Conclusions: Negative emotional states in this population of women may be confounded with their cognitive deficits. Routine antenatal screening for negative emotional states is therefore recommended to ensure that the mental health care needs of women with ID and/or self-reported learning difficulties are not overlooked.

Background: The support networks of mothers with intellectual disabilities play an important role in caring for children. Understanding the support provided by the network is therefore vital in understanding the capacity of a mother to care for her child. Nevertheless, how these important networks came into existence is yet to be explored. Furthermore, the other functions support networks may serve are poorly understood, apart from assistance with child care.

Materials and Methods: This paper reports some findings from a phenomenological study into becoming a mother for women with intellectual disabilities. Semi-structured interviews were conducted with 17 expectant mothers with intellectual disabilities. One part of the phenomenon, 'negotiating a support network for me and my baby' is described.

Results: Expectant mothers strategically negotiated support networks prior to the baby's birth. They sought practical assistance for the tasks of mothering from those who acknowledged them as the most important person in their baby's life.

Conclusions: The findings have implications for the practitioners engaged in supporting mothers and their children, particularly those who are a part of the lives of women with intellectual disabilities and their children due to a court order.

Background: An increasing number of women with intellectual disability (ID) have children. Crosssectional, clinical population data suggest that these women face an increased risk of delivering preterm and/or low birthweight babies. The aim of this study was to explore the prevalence of poor pregnancy and birth outcomes in women with ID and/or self-reported learning difficulties in an antenatal population.

Methods: A total of 878 pregnant women attending their first antenatal clinic visit were 'screened' for ID. Pregnancy and birth outcomes data were extracted from medical records post-partum.These data included pregnancy-related health conditions, including pre-eclampsia and gestational diabetes, and birth outcomes, including gestational age, birthweight, Apgar score and admission to neonatal intensive care and/or special care nursery.

Results: A total of 57 (6.5%) pregnant women with ID and/or self-reported learning difficulties were identified. These women experienced an unusually high rate of pre-eclampsia (odds ratio = 2.85). Their children more often had low birthweights (odds ratio = 3.08), and they were more frequently admitted to neonatal intensive care or special care nursery (odds ratio = 2.51).

Conclusion: Further research is needed to understand the reasons for the adverse findings of this study and identify potentially changeable factors contributing to adverse pregnancy and birth outcomes for women with ID and/or self-reported learning difficulties and their children. To ensure quality antenatal care, health professionals may need to consider innovations such as extended consultation times, communication aids and audiotaping consultations.

Using narrative interviews underpinned by an ecocultural framework, this Australian study investigated the experiences of 39 mothers of children with disabilities and 27 staff members from the early childhood services which these children attended. The data highlight serious limitations of current government policy and provisions in Australia to facilitating the inclusion of children with disabilities into mainstream children's services. The small number of successful inclusions evident in this study appears to be in spite of current government policy and may be attributed more to staff personnel. This article concludes by calling for policy change that actively facilitates the successful inclusion of children with disabilities into generalist early childhood services.

Objective: To investigate the self-reported health status of mothers of school-age children with disabilities.

Method: Seventy-four mothers in the Northern Metropolitan and Eastern Sydney regions completed the MOS 36-item Short Form Health Survey (SF-36). The survey was re-administered 11 to 15 months later and completed by sixty-two mothers.

Results: On average, the mothers reported significantly poorer mental health by comparison with population norms for women in New South Wales and for mothers with partners Australia wide.

Conclusions: In the absence of population data, the results of this study substantiate the findings of earlier studies based on clinical assessment and small group comparison designs.

Background: Informed by Ecocultural theory, this study explores the challenges that families caring for an adolescent with disability face and strategies they apply to sustain a meaningful family routine during the adolescent years.

Methods: In-depth Ecocultural interviews were conducted with 20 families caring for an adolescent (aged 10-21 years) with severe disabilities, including intellectual disability. Transcripts were analysed using a constant comparative approach. Two types of family level challenges were differentiated - internal and external factors impacting on daily family life.

Results: Two themes representing this distinction between internal and external family challenges are presented in detail. Across both younger adolescent (aged 10 - 14 years) and older adolescent (aged 16 - 20 years) groups, families were first challenged by changing family roles and relationships (an internal factor). In response, families used three strategies: dividing up family time, protecting some members from too much involvement and engaging others in family activities. Families were also challenged by service discontinuity(an external factor). Accommodation strategies included advocacy, coordinating multiple services and forfeiting a desired alternative.

Conclusions: Family routine in the adolescent years is dynamic rather than static, simultaneously challenged by internal and external factors. Families use multiple strategies to accommodate these challenges, which are underpinned by their beliefs, values and resources. Professionals working with families caring for an adolescent with disability need to be aware of these in order to support families effectively to sustain a meaningful family routine during the adolescent years.

The experience of pregnancy and motherhood, from a woman's point of view, has only been considered worthy of research in recent decades. In this time, a small number of studies have examined the experiences of mothers with intellectual disabilities. No study to date has focused on the lived experiences of pregnancy for women with intellectual disabilities. This paper reports findings from a phenomenological study into becoming a mother for women with intellectual disabilities. We focus on the stories of three Australian women with intellectual disabilities about their experiences of being pregnant. Three key themes of the pregnancy experience for these women are illuminated. First, through experiencing their pregnant bodies the women began to understand themselves as mothers. Secondly, the women actively made decisions regarding how their baby would be cared for. Thirdly, the women involved trusted others in these important decisions. This paper gives voice to a group of marginalized women whose views about being pregnant have traditionally been silenced and/or ignored.

This article shows how time works against parents with learning difficulties in the child protection system and Children Act proceedings. The prevailing wisdom, embedded in policy and the literature, is that delay in care cases is bad for the child and may jeopardize his or her future. This paper shows how the pressure to avoid delay might itself be harming some families, especially parents with learning difficulties. Drawing on interviews with social work practitioners undertaken as part of a larger study, the authors describe the various forms of temporal discrimination that impact on this group of disabled parents. They conclude that procedural time limits make it harder for parents with learning difficulties to meet the standards and expectations enforced by Children's Services and the courts.

Research on child protection practice has been concerned mainly with the problem of the maltreating parent. System philosophies and processes and the influences on these, while addressed by some authors, have not received the attention they deserve. Understanding the ways in which child protection practices are constructed offers insights into the equitable or otherwise application of these processes to different groups of parents within our communities. In the study reported here we examine how child protection workers make decisions about removing children and subsequently initiating court proceedings. By focusing our analysis on a particularly vulnerable group of parents, those with intellectual disability, we highlight the ways in which child protection workers carry out their legislative mandate to keep children safe.

Child protection cases typically involve families struggling through socio-economic hardship. That said, in child protection practice there is a readiness to see the parent as the problem with parent reform or child removal as the preferred remedy. In this paper, the emergence and ongoing legitimacy of this child protection response is traced to the de-politicisation of social inequality.

Caregiver burden is an increasing problem with patients surviving longer and more care tasks falling to informal caregivers. While research has identified patient and caregiver variables associated with caregiver burden, less research has focused on aspects of the care environment. The present study investigated the available support and unmet needs of 57 patients with advanced cancer, 45 of their carers and 40 of their health professionals. Carers and patients consistently identified higher levels of available support for the patient than health care professionals, with carers identifying higher levels of support than patients. Carers also identified more patient unmet needs than health care professionals, who in turn identified more than patients. Surprisingly, available support did not increase over 6 months and there was a tendency for unmet needs to decrease over time. Low available support, high unmet needs and a larger discrepancy between carer and patients' reports of patients' unmet need predicted negative aspects of caregiver burden. These results suggest that health care professionals underestimate available support to patients and both patients and health care professionals underestimate patients' unmet needs in comparison to carers. Carers' reports of patients' unmet needs are important to consider as they were associated with high levels of caregiver burden, including poorer caregiver health. Health care professionals should encourage opportunities for carers to discuss their views of the ongoing needs of patients with advanced cancer.

Objective: Response shift is a process argued to facilitate adjustment to illness. This study investigated the relationship between response shift and adjustment.

Methods: Fifty-six patients with metastatic cancer were interviewed using SEIQoLDW and asked to nominate the five areas of most importance to them. Surviving patients were re-interviewed 3 (n=38) and 6 months (n=28) later.

Results: The majority of patients showed evidence of restricted priorities close to the diagnosis of metastatic cancer. Approximately half the sample shifted their priorities from one area to another over time. Response shift was found to be helpful for those who nominated life domains that were poorly rated, but unhelpful, for those who shifted from a highly rated life domain.

Conclusions: These results suggest that response shift is common during adjustment to illness. However, response shift can be helpful or unhelpful depending upon the context. The clinical and theoretical implications of these findings are discussed.

This paper presents and contrasts the findings from two independent but comparable court studies in England and Australia of care proceedings involving parents with learning difficulties. Significant differences between the two jurisdictions were found in both prevalence and outcomes, with a much higher proportion of cases showing in the England sample, with many more children being returned home to live with their parents in Australia, and with far more children being placed out-of-home and outside the family network in England. We explore the reasons for these differences and discuss the implications of the findings.

Background: Parents with learning difficulties are known to face a high risk of losing their children. This paper reports findings from a study designed to throw light on the numbers of parents with learning difficulties and their children coming before the Family Courts in Children Act proceedings and what happened to them as a result.

Method: The paper presents descriptive information on the characteristics of the parents and children, the basis of professional concerns in these cases, and details of the final outcomes and placement decisions extracted from a documentary review of court files.

Results: Parents with learning difficulties were found to be disproportionately represented in care proceedings and their children were significantly more likely to be freed for adoption than the children of any other group of parents.

Conclusions: On the basis of the research evidence, parents with learning difficulties appear to be treated more harshly because of their disability, raising the question of the interface between disability discrimination legislation and the Children Act in such cases.

Background: This study explored the relationship between family life variables and out-of-home placement tendency for families of school-age children with disabilities and high support needs.

Method: This study was a prospective cohort study of 81 families with children with disabilities and high support needs aged between 6 and 13 years. There were two waves of data collection 12-18 months apart involving in-depth interviews with the primary carer.

Results: Out-of-home placement tendency was associated with three interrelated family life variables: (i) difficulty balancing the demands of caring and the needs of other family members; (ii) sharing workload and responsibility; and (iii) integrating the child into the everyday world.

Conclusion: Family capacity to continue balancing the demands of caring and the needs of other family members is central to maintaining family-based placement.