When parenting never ends

  Australian Institute of Family Studies Conference When parenting never ends

  Timothy Broady

Senior Research and Development Officer, Carers NSW

  Parenting a child with a disability

  Experience of diagnosis

• Distressing • Relief • Changed expectations Changed potential for future independence
• Variations in severity

  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:

  Parenting a child with a disability

  Degree of impairment

• – level of functionality – severity of symptoms Chronic stress and allostatic load
• Parenting responsibilities (plus additional caring stresses) continue beyond typical parenting timeframes

  Carers NSW Carer Survey

  Collect information about carers in NSW to inform advocacy

• Demographics • Health and wellbeing
• Employment and finances
• Service access
• Unmet needs

  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
• 32.4% disability or serious illness in last 12 months

  2014 Survey

  Son/daughter

• Under 18 = 326 (40.4%)
• 18+ = 453 (56.2%)
• Both = 26 Comparisons between:
• Carers of children under 18 years
• Carers of adult children

  Social Support (p=.083)

  or No signifi ant diffe en e in su je tive suppo t

  (p=.712)

  uality of suppo t Carers of adult children reported more social interaction

  (p=.001)

• Frequency of social contact
• Satisfaction with social relationships

  Wellbeing

  Carers of adult children reported better subjective wellbeing

  (p=.002)

• – BUT all carers significantly lower than normal range

  80

  75

  70

  65

  55

  50

  45

  40

  Wellbeing (p=.001)

  Carers of adult children reported lower psychological distress

  70

  60

  50

  40 %

  30

  20

  10 Low Moderate High Very high Child Adult ABS

  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 daughter for 16 yrs a d ish I had had o e suppo t

  Service Access

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

  70

  60

  50

  40 %

  30

  20

  Want more 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

to do so

  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.

activities, respite, employment opportunities which are all important now

as part of his care + wellbeing for the future

  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 looking after herself but I have no idea what support there would be out there to assist her

  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 Our situation may be in need of further support in the future

  

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 +

freedom + knowledge young person will be safe/secure/well looked after upon death of carer. She is not other siblings

  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
• Life course progression

  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
• Respect for individual caring dyads and broader caring networks

Contact details

  Tim Broady Senior Research and Development Officer Carers NSW P: 02 9280 4744

  E: timb@carersnsw.org.au