The mental health of mothers of school-aged children with a disability

The mental health of mothers of school-aged children with a disability

22 August 2012

Mothers of school-aged children with disabilities often face numerous challenges, including mental health problems, and a health-care system with limited strategies specifically designed to support their needs.

Mothers of school-aged children with disabilities often face numerous challenges, including mental health problems, and a health-care system with limited strategies specifically designed to support their needs.

New research has found that, in Australia, these mothers reported significantly lower levels of subjective mental health than other women and the adult population in general. Indeed, the self-reported mental health of this group was two standard deviations below the national adult average.

Of the 152 Victorian mothers who participated in the mixed-methods study, half reported that their health affected their ability to provide the care that their child needed, and half experienced frequent interrupted sleep secondary to the care of their child with a disability.

There is a common belief that the challenges faced by mothers of children with a disability stem from grief and sadness related to their child’s disability. However, the current research did not bear this out. Instead, the research suggests that a number of factors influence maternal mental health and wellbeing when there is a child with a disability in the family.

The four strongest predictors of maternal mental health (collectively accounting for 37.1% of the observed variance) identified in the research were:

  • Participation in health-promoting activities (e.g., active and passive recreational pursuits, time with socially supportive others, time out and actively planning healthy lifestyle choices);
  • maternal empowerment over their child’s disability, needs and family matters (e.g., access to information about their child’s condition and service needs);
  • the child’s emotional functioning; and
  • the degree to which the child’s service needs were unmet.

Carers who have additional mental health needs require additional supports and services if they are to continue to adequately meet the requirements of their role as a primary carer to their child with a disability and care for themselves.

Mothers who are carers for children with disabilities are largely unable to advocate for their own health needs because of the very nature of their care-giving responsibilities. Therefore, it is up to professionals who are engaged with families who are raising a child with a disability to play a key role advocating for pathways and services that assist mothers with a mental health condition.

The research has evolved to the design of a responsive health promotion program called “Healthy Mum, Healthy Family”. The program, currently under development, consists of set of workshops supported by a website for mothers across Australia.

For more information on this research, you can contact Dr Helen Bourke-Taylor at: helen.bourke-taylor@monash.edu

Further information on the research described above, and references to support the assertions in this short article can be found in the following journal articles:

Bourke-Taylor. H.M., Howie, L. Law, M., Pallant, J.F. (2012) Self reported mental health of mothers with a school aged child with a disability in Victoria: a mixed method study. Journal of Paediatrics and Child Health, 48. 153-159.

Bourke-Taylor, H., Pallant, J., Law, M., & Howie, L. (2012). Predicting mental health among mothers of school-aged children with developmental disabilities: The relative contribution of child, maternal and environmental factors. Research in Developmental Disabilities, 33, 1732–1740.

An earlier study by AIFS also highlights the effects of caring for someone with a disability on family members. To access the study, see - The nature and impact of caring for family members with a disability in Australia

Comments

So is reading this meant to make us feel better or worse? We need respite. Good quality respite. Now you have this information, can we have our respite? Please?
special mum
Hi Special Mum Thanks for your comments. One of CFCA's key roles is to highlight research to inform policy and practice. We hope that giving more prominence to research such as this helps to raise awareness for the benefit of families and children experiencing these issues. Thanks, Elly
Elly Robinson
This is very helpful. It points the way to a clear pathway of helping and supporting mothers and, through doing so, enhancing their health and wellbeing and that of their families.
Jane
Mothers of a child with a disability need constant case management. Not someone who only is contacted in a crisis, someone who calls every fortnight/month just so that the mother knows that someone else cares about their struggles through life with their child. I did not get case management until my daughter was 9 years old. This is only due to my visits to my local member of parliament, crying and pleading for help. We have been on the waiting list for an 'individual support package' for the last 4.5 years. Once my child went to school all the money disappeared and we were left to fight for every piece of equipment and therapy that my child needs. This is not right. My everyday life is a struggle, why do I then have to constantly fight for the essential items my child needs. regards, Tired and Frustrated Mum
Natalie
Oh Natalie I can relate all too well! We had case management when out daughter was in early intervention but as soon as she started school we had none! I felt completely lost and abandoned - there was no longer a clear contact point when we had questions about how the system works, no longer someone who was aware of the big picture of our family situation. We went on waiting lists at DHS and our local disability services provided and after 8 months we got a 3 month package of case management to put in much support in place as possible but we don't have anyone we can call to ask about anything. As part of that case management we approached DHS for respite but were told our needs are not great enough. Our daughter is nearly 7 years old. She does not crawl, walk, chew, or communicate in anyway other than crying or laughing. She is profoundly physically and intellectually disabled BUT our "needs are not great enough" - ie we are not on the brink of breakdown...yet. We are still on the DHS list for case management but not holding our breath. Case management support would make a big difference. The best case managers we have had have also doubled as counsellors, they knew us well and understood that sometimes minor changes can have very big impacts. They gave us support and sometimes just an opportunity to vent. Quality, permanent case management would certainly be a step in the right direction for protecting mental health of parents of kids with disabilities.
special mum
The pain, distress and profound exhaustion expressed in the comments above underlines the need for a National Disability Insurance Scheme. The scheme wont fix everything but the insurance model that underpins it recognises the importance of focusing on building and supporting knowledge, skills, capacity and resilience of the individual and family. Supporting families right from the beginning and for the long-term is vital to the mental health of the mother, the functioning of the family and the optimal development of the child/adolescent/adult with disability. My son is 27 now, and I relate to all that 'Special Mum' and Natalie have said. When our son/daughter is identified as having a disability we embark on a lifelong marathon - we need support all along the way. If we don't have the support we need our families become isolated, dependent and all our energy is taken up in the struggle to survive. With support we can participate and contribute; our lives are enriched and we can reach out and enrich those of others and give to our communities. Bring on the NDIS!
Jane
I must read the original paper...did the research exclude mothers with themselves with a disability? a diagnosed mental health condition? more than one child with a disability? multiples of these factors? did it look at the impact of fathers? (noticing that fathers don't rate a mention in the four main influences on maternal mental health) does maternal mental health vary over times - are episodes of positive mental health or more severe negative mental health predictable? (thinking about when services can intervene prior to desperation setting in)and why was the number of women surveyed so small? (other than because we are all too tired and too busy to participate). This research is welcome - recognition matters.
tiredindeed
Hi tiredindeed I'm sure Helen would be happy to answer some of your questions at the email address above - and I'm sure she'll be happy to hear that the research is welcome. Helen and her team are currently building a Healthy Mum, Healthy Family website related to this research. The site content and outline is ready and they are hoping it will be available later this year with workshops scheduled once a month in Feb-July 2013. So all modules will be available in August 2013. We'll keep those who are interested posted on this - you can subscribe to our e-alert at https://www.aifs.gov.au/cfca/subscribe.php and look for this news and other relevant stories as they arise. Thanks, Elly
Elly Robinson
Hello tiredindeed and other mothers. Mothers are very important people in the lives of children with disabilities and their other family members as well. Mothers do need recognition and appreciation. This research was designed to assist mothers to learn from each other. The researcher acts as the knowledge brocker, sharing the findings with other mothers so that they can identify and stengthen what supports are available and identify what is helpful, because everyone's situation is different. In answer to some of your questions tiredindeed: Yes, all mothers who contacted me over 10 months were included. Yes a small percentage had a disability (hearing impaired, multiple sclerosis, stroke, other). Half of the mothers had developed a mental health condition that they had sought help for. Yes approximately 30 families had two or three children with a disability and yes this was associated with higher stress. Fathers are also extremely important people in the lives of children with disabilities. I didn't study this area of family life, as my focus is/was understanding and building recognition and support for mothers. In the qualitative study, mothers described partners who shared caregiving or alternated care (i.e. could care for the child when they wanted to go out/work etc) as the most supportive partners. However many dads were out doing double shifts or tolerating a well paying awful job due to the costs of raising a child with additional needs. This area needs more research. Actually every area needs more research! Wishing everyone well.
Helen B-T
I need to ponder this. I wonder whether the lesser levels of reported mental health concerns for mothers of children with disabilities is in fact that many simply cannot face another challenge like recognising and/or dealing with mental health issues for themselves when they need to keep going for their children. I know i delayed seeking help for just that reason. I needed to be strong for my child and admitting i needed help felt like it weakened me. There is so much unspoken pressure that it is easier to focus on seeking help for your child rather than yourself.
CS
This is great research. There is another group that is overlooked in policy - the siblings of children with disability. For some mums (and dads) the other children in the family become more of a concern than the child with disability. In fact the AIFS study on the wellbeing of carers in 2008 showed that other children in the family had higher rates of depression than other kids in the community, regardless of any caring role they may or may not play. We need policy to focus more on families of children with disability rather than just on carers. The whole family is affected. Siblings Australia is the only organisation in Australia to focus on siblings and on strengthening whole families and, over 13 years, has developed a national and international reputation for its work, but it cannot access any government funding to support this important work. www.siblingsaustralia.org.au
Kate
Kate, your comment is so true. Partners, to are often left out in the cold as well, the tresses of working to support a family that has such sky rocketing costs and people don't acknowledge the stress and strain they are under. Male primary carers probably have it even worse. I don't know how huge it would be to do whole family research put potentially there is a risk of looking at only one segment of the family as it the whole unit under stress.
CS

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Helen Bourke-Taylor

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