- Title
- Travelling with two: balancing identity and risk in mothers with intellectual disability
- Creator
- Williams, Namira Edwina
- Relation
- University of Newcastle Research Higher Degree Thesis
- Resource Type
- thesis
- Date
- 2020
- Description
- Higher Doctorate - Doctor of Philosophy (PhD)
- Description
- Women with intellectual disability are a marginalised group who frequently have their children removed from their care. Whilst changes to policies for people with intellectual disability (ID) promote inclusion and a life comparable with that of their non-disabled peers, the opportunity to become parents and raise children is limited for these women. Few studies have considered the experiences of service providers during pregnancy for these women or the experiences of these mothers as they interact with the maternity system. In this qualitative study, the aim was to understand and identify those barriers or enablers for mothers with intellectual disability during their childbearing period and for those providing care for them. A contemporary grounded theory research approach was taken to elicit the factors that contributed to better understanding the social processes occurring during mother–provider interactions. In-depth data were gained through semi-structured interviews with two mothers with intellectual disability and twelve service providers. Data were also drawn from eight focus groups with 33 service providers. Purposeful and theoretical sampling led to the recruitment of a range of service provider participants who comprised midwives, child and family nurses, a genetic counsellor, social workers, child protection staff, and disability support workers. Findings contributed towards the conceptual theory of ‘Travelling with two’ in which women with intellectual disability, their significant others and service providers balance the concepts of risk and identity. Here, individual or professional identity is balanced against perceived risks as they are influenced by concepts of ‘good mothering’ and stigmatisation of those with intellectual disability. Three key processes contribute towards the core conceptual theory, as individuals assess, label and make decisions (making judgments) which contribute to how they engage, communicate, and collaborate. Significant to these processes is personal alignment to others or organisations, and individual attributes which act to facilitate or inhibit navigating the maternity system. For women with intellectual disability, personal histories of stigmatised labels contributed to ‘keeping in’ and not identifying with intellectual disability. Consequently, this contributed to difficulties for many service providers, especially midwives, who lacked experience of identifying ID, and skills in making accommodations to assess, communicate and educate these mothers. When women with ID are judged as mothers using comparisons with mainstream women, child removal is often inevitable, occurring through covert processes with emotional trauma to all involved. The findings from this study contribute to extant knowledge in better understanding the seen and unseen processes that occur during interactions between woman with ID and providers within the maternity system. Findings of this study provide qualitative evidence of gaps in current maternity service delivery for this marginalised group of mothers, with implications for policy development, provider education and focused models of maternity care.
- Subject
- intellectual disability; mothers; grounded theory; stigma; maternity care
- Identifier
- http://hdl.handle.net/1959.13/1417611
- Identifier
- uon:37229
- Rights
- Copyright 2020 Namira Edwina Williams
- Language
- eng
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| Thumbnail | File | Description | Size | Format | |||
|---|---|---|---|---|---|---|---|
| View Details Download | ATTACHMENT01 | Thesis | 5 MB | Adobe Acrobat PDF | View Details Download | ||
| View Details Download | ATTACHMENT02 | Abstract | 362 KB | Adobe Acrobat PDF | View Details Download |