When parenting never ends

Australian Institute of Family Studies Conference July 30th – _{August 1}st_{, 2014}

When parenting never ends

Timothy Broady

Parenting a child with a disability

Experience of diagnosis

• Distressing

• Relief

• Changed expectations

Changed potential for future independence

Parenting a child with a disability

He’s ha d o k, ut he’s o th it

Positives:

• Love, relationship

• New outlook; personal growth Challenges:

• Medical, behavioural symptoms

• Finances

• Stress, burden, depression, etc. Concerns for the future:

• Future independence, quality of life

Parenting a child with a disability

Degree of impairment – level of functionality – severity of symptoms

Chronic stress and allostatic load

Carers NSW Carer Survey

Collect information about carers in NSW to inform advocacy

• Demographics

• Health and wellbeing

• Employment and finances

• Service access

2014 Survey

Developed in consultation with expert reference committee

Sections:

• The person you care for

• Employment

• Service access and social support

• Health and wellbeing

• Demographics

• Person centred approaches

2014 Survey

N = 806 caring for son/daughter (45.3%)

• 93% female

• Mean age = 53.45 years (Range: 21 – 89)

• 2.9% Aboriginal

• 10.8% LOTE

• 54% Sydney and surrounds

2014 Survey

Son/daughter

• Under 18 = 326 (40.4%)

• 18+ = 453 (56.2%)

• Both = 26

Comparisons between:

• Carers of children under 18 years

Social Support

No signifi ant diffe en e in su je tive suppo t (p=.083) or

uality of suppo t (p=.712)

Carers of adult children reported more social interaction

(p=.001)

• Frequency of social contact

Wellbeing

Carers of adult children reported better subjective wellbeing

(p=.002) – BUT all carers significantly lower than normal range

Wellbeing

Carers of adult children reported lower psychological distress (p=.001)

0

Low Moderate High Very high

%

Service Access

Caring responsibilities prevent from using services/supports:

• 38.3% carers of children <18

• 28.0% carers of adult children

I ha e had all the espo si ility fo y do sy d o e

Service Access

Carers of adult children more likely to use, less likely to want more

0

Caring Trajectory

Friends were a great help when my daughter was young: but now we have few friends and rely more on family

The Carers NSW Carer Line was helpful in the initial years of caring but have not called them for past 5 years

It as e y ha d to fi d a y suppo t at all… took a out a yea

Caring Trajectory

It was very important in the early days to connect with other parents of children who had a disability. I found it very helpful both for emotional support and for getting many practical tips & advice especially with

ega ds to se i es a aila le fo y hild… These days, I ha e a fe good

friends who also have children with disabilities. They and my regular friends/family are my support

A lot of the above [services] I used when my son was younger. I now rely on information being send to me from organisations we are associated with for updates on what is available for adults with disabilities e.g.

Caring Trajectory

The most troubling question/situation is what will happen to

ou so he e a ’t look afte hi

Due our age + health we are very worried what will happen to our cared for

I constantly worry about what will happen to my daughter

he I a o lo ge he e, e ause she is ’t apa le of

Caring Trajectory

I just do my work, care for my daughter and manage as best I can. My concern is I am getting older and tired and who will look after her then when I cannot

I ay fi d I e ui e suppo t should y so ’s o ditio

deteriorate but as his mother I have tried to encourage him to remain independent as long as possible

Caring Trajectory

Caring for a family is hard work however caring for children with special needs is even harder

My health issue are a direct consequence of a lifetime of caring

and the incredible physical and emotional load of raising 3 children to adulthood who all have developmental disability and mental

health vulnerabilities without adequate support and without the very basic support mothers of typical children use

Agei g a e s a ot go o fo e e + dese e so e eti e e t +

Discussion

Note that these are emerging findings

• Further analysis over coming months

• Final Carer Survey report due for release October, 2014

Future research

• Specific disability, degree of function

• Other potential covariates

Discussion

Changing needs of carers

• Different services at different stages

• Different, not less

• Personal distress vs. long term fears

• Needs of carers vs. needs of care recipients

Contact details

Tim Broady

Senior Research and Development Officer Carers NSW

P: 02 9280 4744