York U study identifies health challenges for mothers of children with developmental disabilities

A community-based study out of York University’s Faculty of Health identifies the health promotion challenges and needs of immigrant mothers of children with developmental disabilities.

Nazilla Khanlou

Nazilla Khanlou, Women’s Health Research Chair in Mental Health at York and associate professor of nursing, led the study titled “Health promotion for immigrant mothers of children with developmental disabilities: What is Relevant?” along with Gail Jones, Louise Kinross and Karen Yoshida.

“Mainstream health promotion doesn’t work for mothers of children with developmental disabilities,” said Khanlou, adding that these challenges intensify when other factors – such as migration status and societal gender roles – are considered.

The York research team conducted 28 in-depth interviews in the Greater Toronto Area and asked mothers of children with developmental disabilities: to suggest what may help them to improve their health and well-being; about the challenges they face to address their mental and physical health; and about some strategies that may promote their health and well-being.

Khanlou said the findings highlight five key points, as follows:

• Immigrant status is a social determinant of health – following immigration, mothers have less social support, which can increase the challenges they have mothering children with developmental disabilities (and less time for their own health promotion).

• Caring for children with developmental disabilities contributes to increased levels of parental stress. Parents experience higher levels of stress, anxiety, illness, marital strain and socioeconomic problems. Mothers are usually primary caregivers of children with developmental disabilities, and often the mother’s health is at risk due to continuous and persistent caregiving for their children.

• New immigrant mothers of children with developmental disabilities have limited time and resources to carry out activities included in mainstream health promotion approaches, such as participating in regular exercise, and taking time for self to spend as they wish.

• A number of social and economic challenges were identified by mothers related to processes of acculturation, settlement, and access to health services for themselves and their children.

• The intersections of culture, gender, caregiving duties and motherhood responsibilities showed powerful impacts on mothers’ perceived health and well-being. Although motherhood was talked about in a positive and rewarding manner, there were also challenges identified, such as having limited time for self, and often having sole responsibility of family and children.

Gender and disability have been understood as social determinants of health, said Khanlou; however, motherhood in relation to the care work mothers do in families with children with disabilities is overlooked in the literature.

“When migration is added to the complexity of simultaneous parenting and caregiving, service providers inadvertently may culturalize families’ challenges instead of looking at the systemic access barriers to meaningful health promotion practices for mothers of children with disabilities,” says Khanlou.

“Our research adds to this, and broadens the understanding of unique and intersecting social determinants of health for immigrant mothers of children with developmental disabilities in culturally diverse and immigrant receiving settings,” she said.

Further to that, Khanlou’s research has resulted in the proposal of a new data-driven model that addresses mothers’ health promotion challenges, facilitators and strategies.  The model recently published in the Journal of Health Care for Women International (2017) in the article titled “Mothering children with developmental disabilities: A critical perspective on health promotion” (Nazilla Khanlou, Nida Mustafa, Luz Maria Vazquez, Deborah Davidson and Karen Yoshida) is derived from the study’s data and centres immigrant mothers’ own perceptions on meaningful health promotion practice and policy at the micro, meso and macro levels.

It is available here: tandfonline.com/doi/abs/10.1080/07399332.2017.1296841.

The study received external funding from Women’s Xchange at Women’s College Research Institute.

Currently, Khanlou and her team are examining the impact of gender and migration status on accessing funding for developmental services in Ontario (funded by the Ministry of Community & Social Services). For more information on this and other studies, see nkhanlou.info.yorku.ca.

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