A Support Guide for the
Wellbeing of Parents and Carers Resource
This resource is designed for local area coordinators working with parents and
carers of a child or young person with a severe disability. The intention of this
resource is to:
1. Provide information on mental wellbeing and how this can be promoted in
parents and carers
2. Provide awareness about poor mental wellbeing in parent and carers
This resource also provides:
3. Guidance on how to assist parents and carers through the resource on
wellbeing
4. Advice on how to protect your own mental wellbeing.
Background on the mental wellbeing of parents and carers
What is mental wellbeing?
“Mental wellbeing is a dynamic state that refers to individuals’ ability to develop their
potential, work productively and creatively, build strong and positive relationships
with others and contribute to their community” (Beddington et al. 2008)
Mental wellbeing represents a sense of positive functioning, which can be made up
of your positive experiences through life and your subjective sense of emotional
stability. There is a close interconnection between your mental, physical and social
health, and good wellbeing does not exclude the presence of mental or physical
illness. It is important to keep in mind that it is always possible to promote mental
wellbeing, regardless of whether you experience a mental health problem or not.
What things are related to parents and carers having good mental health?
Research has identified two strong predictors of positive mental health in mothers:
1) A high degree of maternal empowerment over their child’s disability, needs
and family matters (e.g. access to information about their child’s condition and
service needs)
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2) Participation in health promoting activities (e.g. active and passive
recreational activities).
These predictors were identified in a study by Bourke-Taylor et al. (2012) on 152
Victorian mothers of school-aged children with disabilities. Examples of the health
promoting activities are as follows:
1. Personal health care tasks, such as planning and eating healthy food and
drinks; following an exercise program.
2. Physically active recreational pursuits that they do alone.
3. Physically active recreational pursuits that they do with other people.
4. Spiritual or rejuvenating personal time.
5. Social activities with people who are important and supportive towards
them.
6. Time out for themselves to spend as they wish.
7. A quiet, physically inactive leisure pursuit that they do alone.
8. A quiet, physically inactive leisure pursuit that they do with others.
Poor mental health and wellbeing in parents and carers
Research has shown that parents caring for a child with a disability experience
poorer wellbeing than parents of a child who is developing typically. Parents of
children with a disability are more likely than other parents to experience chronic
stress, severe fatigue, sleep deprivation and poorer physical health (Brehaut et al.
2004; Gupta, 2004; Tong et al., 2003; Bourke-Taylor et al., 2010).
Parents and carers are highly vulnerable to mental health problems, and research
has shown evidence of elevated anxiety and depression symptoms compared to
parents and carers raising a child who is developing typically (Grant et al., 2013;
Singer, 2006).
In a recent review of 42 international studies, 14 found that mothers reported
depressive symptoms that were of clinical concern. Across these 14 studies,
incidence rates ranged from 6 to 49%, with an estimated average of 23.6%
experiencing clinically significant depression levels (Bailey et al., 2007).
A note on mental illness
Mental health problems can develop into mental illness (mental disorders). Although
we all experience symptoms of poor mental health, such as stress and worry, these
are often transient and balanced by the positive experiences in our life. However,
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faced with ongoing challenges and struggles our mental health problems can
become more severe and difficult to relieve and we may develop mental illness such
as a major depressive disorder.
Mental illness can significantly affect how you think, feel and behave and is
diagnosed using standardised criteria by psychiatrists, clinical psychologists, general
practitioners and specialist nurses and other allied health workers. It is important to
try and detect when parents and carers are struggling with their mental health and
guide them to appropriate points of contact - before their problems become worse.
When are the most stressful times for parents and carers?
Stress levels change from day to day and week to week. At some points in time a
greater degree of stress is likely, such as:
At the time of diagnosis
At transition points, for example, starting and leaving school
When young adulthood is reached
What things are related to parents and carers having poor mental health?
A number of factors contribute to the poor mental health of parents and carers.
These factors include: excessive caregiving responsibilities, receiving insufficient
social support - including family support, unmet service needs, insufficient financial
support, perceived low level of personal agency or autonomy, and less adaptive
coping strategies.
Why it is hard for parents and carers to focus on their own wellbeing
There are a number of factors that may prevent parents and carers from promoting
their mental wellbeing. Some of these may include:
Limited time and energy
Limited finances
Strong beliefs that they should be able to cope
Limited knowledge of options e.g. free counselling sessions
Unhappiness with their support options e.g. inadequate respite
allowance
Limited beliefs that their wellbeing can improve. Parents may feel that
their wellbeing is determined by factors outside their control.
Lack of support networks
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Guiding parents and carers to appropriate services
It is important to understand the different pathways that parents and carers can take
to seek help. These can include:
The family general practitioner (GP)
Help lines – that are listed in the wellbeing resource
Carers Australia National Carers Counselling Program
There are also specific mental health services that can be accessed through a GP,
such as the:
Better Access to Mental Health program
Access to Allied Psychological Services scheme
Using the wellbeing resource
Be prepared
Ensure that you have previously read the resource.
Ensure that you are familiar with the referral pathways and the
appropriate help lines.
Ensure that your knowledge of support options is up-to date.
Practice your active listening skills.
Know the boundaries of your role. Remember you are not there as a
counsellor and it is not your role to assess parents’ mental health or
provide solutions for their problems. The best thing you can do is
listen to parents, support them in identifying their problems and
potential options.
Introducing the resource
Here is one way that you could introduce the resource to parents “Today I have a resource for you that is about your mental health and
wellbeing. This resource has been written based on the views of parents of
children and young people with a disability and has lots of quotes from other
parents. The purpose of the resource is to get you thinking about your own
wellbeing. It would be great if we could go through this together, and discuss
how you are going generally.”
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The importance of trust and good listening skills – what you can do
The information in the wellbeing resource will lead parents and carers to think about
the way they are feeling, which may include emotions they do not have a name for or
are unfamiliar with. They might have been experiencing uncomfortable or distressing
emotions for a long time, with very few people asking about or being interested in
how they are feeling.
Parents and carers will need to develop a trusting relationship with you before they
can tell you how they are feeling and work with you to problem solve and seek
support.
Being understanding, warm and supportive is one way to develop this trust.

Have a warm and friendly manner whilst maintaining your professional
boundaries.

Try to match the tone of your voice with the content of the conversation with
the parent and carers. This means being non-judgemental, empathic and
compassionate when hearing about parents’ frustrations and
disappointments.

Try to adapt your language to the individual – this will consider the different
educational backgrounds, language and communication abilities of parents
and carers.

Show empathy in your responses – this means trying to step into the shoes of
parents and carers and understand things from their perspective, and
communicating this understanding.
Good listening skills are important in establishing trust and engaging with parents
and carers. Some suggestions for empathic listening include:

Listen without judgement.

Try to limit the number of questions asked whilst listening – it may shape or
take control of the conversation.

Clarify what the parent and carer is saying by making a brief summary of what
they have said and reflecting it back (i.e. paraphrase) to parents and carers.
This will help you to understand what they are saying and can affirm their
experiences.

Be aware of your eye contact: Providing good eye contact to parents and
carers will give the impression you are engaged in what they are saying.
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
Think about your body language: Ensure your body posture does not
communicate impatience, discomfort or disinterest.
It is also important to be aware of cultural differences when developing trust. In some
cultures, eye contact may need to be avoided when discussing serious topics. You
might need to ask families whether they would like to receive an interpreter.
When discussing the resource – Do’s and Don’ts
Many parents and carers will appreciate your assistance through their reading of the
resource. They may want to ask you questions about the information in the resource
or may need your help to seek further information. The following list of Do’s and
Don’ts may help you to talk effectively with parents and carers about the resource:
Do

Let parents know how long you have to go through the resource with them

Try to ask open–ended questions, this will create a sense of openness

Guide the conversation with caring questions and give them time to reply

Summarise the issues, such as “have I got it right, it seems that the main
issues for you are…”

Encourage action and ideas to further promote parents’ wellbeing. This may
include asking parents and carers what has worked for them previously, and
what they would like to change.

Have cultural awareness, be mindful of different cultural beliefs and practices
and ensure your approach is respectful.

Take an approach that makes parents feel empowered and as though they
can exert some agency even though their predicament is very difficult.

Encourage them to take one step at a time, such as see their doctor, call a
helpline, or ask their service provider a question on support.
Don’t

Be directive and tell parents and carers what they should do. This can have a
negative impact on your relationship with the parent and carer.

Assume an authoritarian role or tone.
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
Make assumptions. It is always better to ask what you don’t understand. Treat
each person as an individual and avoid stereotyping.

Rush to solve problems for them, rather, help them understand that solutions
are available when they’re ready to start exploring their problems.
Closing conversations around the content of the resource may need a sensitive
approach. Responding positively to parents and carers for sharing their experiences
followed by a summary of agreed follow up actions is a good approach that will
balance being respectful with what needs to be done. This may include:
“I’m really glad that you’ve been able to talk about your wellbeing
with me today and I hope that the resource is useful for you. Whilst I
would really love to keep talking, perhaps we could spend the last 5
minutes on summarising what you will do and what I will follow up
with?”
If you find it difficult to move on to the practical aspects of support, it might be useful
to say:
“I was wondering if we could switch from talking about x and turn to
y, so I can get a clearer idea of what might help. Is this OK with
you?”
What to do if a parent becomes distressed or needs immediate help?
Try to ‘normalise’ their reactions: Emphasise that their feelings are normal in the
context in which they are living. However, this does not mean that they should
struggle and experience high levels of stress in the long-term and that you can assist
them in seeking the appropriate support and taking ‘corrective action’.
In times of significant distress: reassure them that there are options for them to get
support and that you can help them in referral pathways. Encourage them to see
their GP or call a national helpline. Try to take a calm and gentle approach such as
saying, “I hear how distressed you are” and practice the skills of empathic listening.
Follow up: Put a note in your diary to call them in a few days or one week. Ask them
if they’ve managed to do what you discussed, such as “I just wondered whether you
managed to see your GP or call the helpline we talked about?”
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Protect your wellbeing!
As you know, life presents a variety of challenges for parents, carers and families of
children and young people with a disability. Listening to their experiences and needs
will often involve hearing about multiple frustrations and grief, which might affect your
own wellbeing. It is important that you take appropriate steps to protect your
wellbeing and have support in place for when you notice changes in your levels of
stress or mood. One long-term effect from not looking after your wellbeing is to
experience burnout. This is a stress reaction where you feel mentally and physically
exhausted, and can result in decreased work performance, fatigue, insomnia, low
mood and susceptibility to physical illness.
Try to monitor your own mental wellbeing and seek support when you feel it is
needed. Do not wait until it all becomes too much – try to address difficulties before
they build up and have a significant impact on your health and wellbeing. It is
important that you have the support of your colleagues and supervisors and let them
know if you are experiencing any changes to the way you feel.
A few things to keep in mind to protect your mental wellbeing are:
Be clear about your care responsibilities and communicate them
respectfully to parents: Your role is not to act as a counsellor or
psychologist but to be aware of the mental health and wellbeing needs
of parents and carers, when immediate support is needed (e.g. crisis)
and the pathways that can be offered to support them.
Establish professional boundaries: Be clear with parents and carers
what you can reasonably do for them, in the context of your job
description, abilities, time constraints and resources.
Get support, both informal and formal (debriefing) from colleagues and
supervisors.
Promote your wellbeing through taking part in activities you enjoy,
connecting with friends and family, eating well and keeping active.
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