Women with Disabilities: Barriers and Facilitators to Accessing ...

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WOMEN WITH DISABILITIES: BARRIERS AND FACILITATORS TO ACCESSING SERVICES DURING PREGNANCY,CHILDBIRTH AND EARLY MOTHERHOODSchool of Nursing and Midwifery, Trinity College Dublinhaving limited understanding of the distress of mothers, or the challenges theyface trying to parent and maintain their mental health. While women described arange of practical and emotional challenges confronting them as parents, mosthad few discussions with health professionals on these issues. Women reportthat health professionals are more focused on their deficits as parents asopposed to capabilities, and on symptom control and drug compliance(Montgomery et al, 2006). Parenting role functions are often ignored in careplanning and pre-discharge planning, with little attention given to the women’sconcerns around parenting (Gross and Semprevivo, 1989; Brunette and Dean,2002). They also recounted incidents, particularly with General Practitioners,where their voice and expertise as mothers was dismissed, further underminingtheir confidence. Some women felt they were treated as the non-expert inrelation to their child because they had a mental health difficulty (Nicholson etal, 1998c; Davies and Allen, 2007).Although the literature emphasises the importance of health care staff talking tochildren about the parent’s illness, or helping parents to do so, this did notappear to happen. Women frequently returned home from a stay within amental hospital, to do what they had done before, and without any increasedknowledge or skills in parenting (Diaz-Canjela and Johnson, 2004; Montgomeryet al, 2006). Women also highlighted the tendency of services to withdraw anypractical help offered as soon as an immediate crisis was resolved (Diaz-Canjela and Johnson, 2004). The frequent change in case worker andinconsistency between case workers were considered to militate against anycontinuity of care and emotional support (Mowbray et al, 2000; Diaz-Canjelaand Johnson, 2004). Lindy Fox (1999), in her personal account, describes howhealth care professionals tended to view her children as the cause of her‘bipolar relapse’, thus focusing health care on breaking up the family asopposed to advocating for services or developing a plan of care to keep herfamily. Overall, services were regarded as offering little continuing support towomen who were struggling to look after children. Intervening in crisis whenthere was a child protection issue and deciding whether children should be37
WOMEN WITH DISABILITIES: BARRIERS AND FACILITATORS TO ACCESSING SERVICES DURING PREGNANCY,CHILDBIRTH AND EARLY MOTHERHOODSchool of Nursing and Midwifery, Trinity College Dublintaken away was seen as the main functions of statutory agencies ( Diaz-Canjelaand Johnson, 2004; Kessler and Ackerson, 2004; Montgomery et al, 2006).Findings from studies that examined the social and clinical characteristics ofmothers whose babies are supervised or removed, suggest that single womenwith a diagnosis of schizophrenia or other illness involving psychosis, living onlow income or below the poverty line, and with low social supports are atparticularly high risk of having their baby supervised by social services and/orraised by someone else (Miller and Finnerty, 1996; Howard et al, 2003;Hollingsworth, 2004). In one study, 50% of women with a diagnosis ofschizophrenia and 10% of women with bipolar disorder in a South Londonmother and baby unit were discharged without their children, or dischargedunder formal supervision from child protection services (Kumar, 1995). In Dippleet al’s (2002) study of women attending rehabilitation psychiatric services inLeicestershire (U.K.), 68% (37) of the mothers had at least 1 child they werepermanently separated from before the child was 18 years old, and in 11 casesthe separation occurred at birth. Only 3 of the 20 women with enduring mentalhealth difficulties in Sands et al’s (2004) study, in the United States, had fullcustody of all their children. The predominant pattern was for the children to bedispersed between a variety of settings – some with mother, father,grandparents, and other relatives, some in foster care, residential care andsome adopted. Not surprisingly, a number of the mothers appeared genuinelybewildered about the custodial arrangements of their children and were unsurewhether children in long term foster care had been adopted or if they were in aposition to do anything to get reunited with their children. In all of the researchthe recurring theme was of women who felt controlled by a legal and psychiatricsystem that was insensitive to them as mothers and human beings.Years after the separation, these women still spoke of their enduring sadness,pain and anger about their loss and were struggling to process and integratetheir experience of being judged as an unfit mother (Miller and Finnerty, 1996;Joseph et al, 1999; Chernomas et al, 2000; Dipple et al, 2002). It is noteworthy38
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