Rachel Mayes

Misconception: The Experience of Pregnancy for Women with Intellectual Disabilities

Abstract The experience of pregnancy and motherhood, from a womans 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 focussed 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...

Developmental Profiles of Children Born to Mothers with Intellectual Disability.

The developmental status of 37 pre-school aged children born to mothers with intellectual disability was assessed and the relationship between developmental status and selected child, maternal and home/environment characteristics was examined. The developmental status of the children varied markedly. Controlling for possible organic pathology, the development of these children did not vary significantly from age-norm expectations in four domains: physical, self-help, social and academic. No statistically significant correlation was found between developmental status and characteristics of the mother or home/environment. The key to prevention may lie in the provision of suitable antenatal and maternity services to ensure the best possible birth outcomes.

Health of mothers with intellectual limitations

Objective: To investigate the health status of mothers with intellectual limitations.

Pre-partum distress in women with intellectual disabilities.

Abstract 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.

Mothering differently: Narratives of mothers with intellectual disability whose children have been compulsorily removed

Abstract Background Despite the frequency with which mothers with intellectual disability have their children removed, little theoretical or empirical work has understood the mothers’ perspectives on this. A few studies have reported mothers’ feelings of grief and loss and their sense of powerlessness in the child protection system. Method This qualitative study explores the daily life narratives of 7 mothers with intellectual disability following the involuntarily removal of their children. Results For most mothers, having a child removed was not a one-off experience. The serial nature of the experience yielded 3 different narratives, lived out in different ways. In some cases, women told a different narrative for each of their removed children. All women remained focused on their children in care. Conclusions The multiple and varied narratives of mothers with intellectual disability who have children in care suggest that their support needs may differ from each other and over time. How their support needs might best be met remains an unanswered question. Further research is also needed to identify any adverse health and social consequences for mothers with children in care as well as the effects on their children.

What happens to parents with intellectual disability following removal of their child in child protection proceedings

As we move forward to support people with intellectual disability to participate in all facets of society they, like us, become subject to societal rules and regulations in all aspects of their lives. Nowhere is this more keenly felt than in the child protection arena. Studies from the United States, Britain, and Australia all point to parents with intellectual disability being overrepresented in proportion to their numbers in the care and protection system. For example, in Australia almost 1 in 10 cases brought before the children’s court featured a parent with intellectual disability (Llewellyn, McConnell, & Ferronato, 2003). In comparison to population estimates of less than 1% (McConnell, Llewellyn, & Ferronato, 2000), this is a significantly greater overrepresentation compared to parents with psychiatric disability, or substance abuse issues. This heightened presence in care and protection proceedings leads, not surprisingly, to these parents being at greater risk than any other parent of losing parental custody of their child (Booth & Booth, 2004; Booth, Booth, & McConnell, 2004; Llewellyn, McConnell, & Ferronato, 2003). Despite over a decade of parent education research demonstrating that people with intellectual disability can and do learn to be more than adequate parents, the view expressed by Accardo and Whitman in 1990 remains widely held: that is, that people with intellectual disability are unlikely to be good enough parents and that they are unlikely to be able to learn to parent appropriately. There is good evidence that the decision to remove a child from parents with intellectual disability is more likely to be based on prejudicial views about the capabilities of these parents than on evidence of child neglect or maltreatment (Booth, Booth, & McConnell, 2004; Hayman, 1990; Llewellyn, McConnell, & Ferronato, 2003; Taylor et al., 1991). It is unlikely that every parent with intellectual disability comes under the scrutiny of the care and protection system. That many do is evident in the figures from a number of countries that report between 30 and 40% of the children of parents with intellectual disability are removed from their parents’ care and placed in protective custody, in foster care, or in a residential setting (Accardo & Whitman, 1990; Mirfin-Veitch, Bray, Williams, Clarkson, & Belton, 1999; Pixa-Kettner, 1998). Recent developments, particularly in the United Kingdom and Australia, in seeking permanent placement for children away from their parents earlier rather than later means that many of these children will not be reunited with their parents. As long as the prevalent attitude of current and future parental incompetence continues to exist, having a child taken away – permanently – remains a real possibility for many parents with intellectual disability. In this Opinions and Perspectives piece we

The Home and Caregiving: Rethinking Space and its Meaning

Occupational therapists are routinely engaged in the homes of their clients with disabilities, providing consultation on the use and modification of space to improve functional independence. The meaning of home space is currently underexplored. This study describes the meaning and use of home space for mothers who are primary caregivers for a child or adolescent with disabilities and high support needs. This article reports data from two empirical studies of mothers of children and adolescents with disabilities. In-depth interviews were conducted with 80 mothers across the two studies. Interview transcripts were analyzed with a grounded theory approach. Access around the home for a family member with disabilities allowed mothers to combine caring with other home management activities. However, preventing access or excluding the family member with a disability from some areas of the home enabled the mothers to resist the medicalization of their homes and create a personal space for themselves. Full access to the home for the child with disabilities was rarely a desirable outcome. Decisions about the home and how it should be modified to improve function become more complex when the needs of family members are taken into account. Meaning ascribed to space within the home is integral to how the space is used and whether a family member with a disability is included or excluded from the space. For occupational therapists, the meaning that clients and their families ascribe to various spaces within the home is as important as the use of space.

Transition to independent accommodation for adults with schizophrenia.

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.

Family caregivers’ perceptions of hospital-based allied health services post-stroke: Use of the Measure of Processes of Care to investigate processes of care

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.

Mothering after child removal: Living under the rule of Greek gods

Child & Family Social Work. 2018;23:417–426. Abstract Many women who experience mental illness are mothers. Evidence suggests that the role of mother is of great importance and value to these women, yet they are more likely than other women to have their children removed from their care. Little is known about the experiences of these mothers after their children are removed. This paper presents a phenomenological analysis of in‐depth interviews with 8 women to answer the following question: How do mothers living with severe mental illness experience mothering after removal of their children by child protection services? The analysis showed that mothering continued to be a major life role for these women, but the way they enacted this role was transformed. Their mothering was now constrained and prescribed by external agents, likened to Greek gods, which imposed both boundaries to what they could do and an obligation to prove themselves worthy. Like Greek gods, these external agents were seen as all powerful, unpredictable, and flawed. The study highlights the need for child protection services and support services to recognize and support noncustodial mothering activities.