Carers in the news: Examining the media’s portrayal of individuals who care for people with and without disabilities

Dr Hugh BainbridgeUniversity of NSW

Email:h.bainbridge@unsw.edu.auWeb: https://www.business.unsw.edu.au/our-people/hughbainbridge

Carers and social exclusion Participation in society

– Workforce participation

Consequences of the portrayal of carers– Psychological, physiological, financial

Carers and employment

Research objective: “To understand how individuals with informal, unpaid caring responsibilities for a family member or friend are depicted in newspaper media”.

Hypothesis 1: Work-family norms will be less “pro-employment” for carers of people with versus without disabilities. Specifically, carers of people with disabilities will be portrayed in the news media as:

– a) possessing less desirable demographics, – b) experiencing greater caring demands, – c) having lower workforce involvement and employment quality, – d) receiving less support, and – e) being less able to combine work and family responsibilities.

Data collection and sample

Data source– “Sydney Morning Herald” (1999-2013)

Sampling strategy– Key word search

– Initial assessment of relevance

– Sample 467 relevant articles

575 unique portrayals of caring

347 portrayals in which a carer assisted the non-disabled, 185 of assistance to people with disabilities, and 43 of carers who assisted both disabled and non-disabled recipients.

Final sample (532 portrayals of caring)

Study variables Carer demographics

– Gender; Age; Married or partnered; Post high school education Care recipient demographics

– Age; Disability status Caring activities undertaken

– Eleven options (e.g., communication, mobility) Employment variables

– Labour force status; Working age; Permanent employment; Occupation; Industry; Public sector employment

Sources of support utilised by the carer– Alternative work arrangements; Work arrangements specifically assisting

carers; Formal sources of non-work assistance; Informal sources of non-work assistance; Receipt of welfare

Treatment of caring – General portrayal of caring; Ability to combine work and care; Carer outcomes

(personal, family, social contact, work)

Method and data analysis Reliability and validity

– Accuracy of the coding scheme was checked with the assistance of a 2nd coder

Data analysis (a mixed methods approach)– Quantitative analysis

– Qualitative analysis

Table 1. Percentage of carers depicted in category

Table 2. Percentage of carers depicted in category

Table 3. Depiction of the consequences of caring by care recipient type

(Higher numbers indicate more a positive portrayal on a 1-5 scale)

Quantitative findings

Is there evidence that work-family norms are less “pro-employment” for carers of people with vs. without disabilities?– Yes. Carers for people with disabilities are portrayed as…

– a) possessing less desirable demographics,

– b) experiencing greater caring demands,

– c) having lower workforce involvement and employment quality,

– d) receiving less support, and

– e) being less able to combine work and family responsibilities

Qualitative findings: Carer demographics

At the age of eight, Ms Malak became the primary carer for her mother, Sarah Trad, who has been confined to a wheelchair since a work accident. Each morning, she washed and dressed her, counted out her medications and cooked, then took herself off to school. Ms Malak began working at a fast food restaurant at the age of 14 to supplement the family's meagre income from welfare benefits. At 16, she should have qualified in her own right for the first time for a carer's allowance but it was contingent on her being away from her mother for fewer than 30 hours a week, forcing her to drop out of several school classes. Despite struggling to stay enrolled for her HSC, she passed last year with flying colours. [“All work and no pay makes for… the life of a youth carer”, 10th December 2003]

Qualitative findings: Activities undertaken It's not easy keeping track of the kids at the Show. It's harder still when there are four

of them. And when one has attention deficit disorder, two have hyper-attention deficit disorder and all have special dietary needs? “They don't get away, mate. We leash them”, explains Tim, reining in his son's harness. If Cody does slip his leash, Dad’s mobile number is emblazoned in ink on his forearm. Joshua also has a mobile number extending from wrist to elbow, but displays it only if coaxed into a Spider-Man pose. Amy wears her mum's number on a necklace, together with the warning “no eggs no nuts”. An aunt, an uncle and a packet of prescription medication are also on hand for the worst-case scenario when a child ingests red cordial near the rodeo pavilion. [“Whoa, young fella - show of restraint works for dad”, 24th April 2003]

Joe is a victim of the cutbacks. His daughter Ariella, 26, is severely physically disabled, being unable to speak, walk, use a toilet, shower or feed herself. [“Families of severely disabled lose home help after budget blowout”, 30th October 2003]

Rebecca*… was violently shaken by her mother's partner. Trauma caused her brain to swell and she was paralysed down one side of her body. She had to learn to walk and talk again and her memory and ability to read and write was severely affected. Nine years of intense rehabilitation allowed Rebecca to attend a mainstream school, with the aid of a carer. [“Shaken baby injuries ‘go undetected’”, 18th September 2009]

Qualitative findings: Employment activities

The portrayal of employment– Carers

Employment status

Hours of work

– Variation by

Age of the recipient of care

The carer’s occupation

Qualitative findings: Sources of support Changes to the Anti-Discrimination Act are a boost for working parents but experts

say that what is needed is cultural change. Deborah Schou was a Hansard sub-editor in the Victorian State Parliament. But her youngest child was frequently ill. He suffered from asthma and bouts of chest infections and so she asked her employer of 17 years, if she could work at home a couple of days a week. The department, though it agreed, never installed the modem in her home to make it possible. Finally, she had to resign. [“Home and a wage”, 3rd March 2001]

As he declined over many weeks, Ms Nagorcka and the couple's daughter, found themselves at the heart of a universal human process usually hidden away in hospital. The women's choice was supported by a GP who made home visits and government jobs that allowed extended leave. [“A choice to be there” 14th June 2011

Allira is 24. She cannot talk, walk or feed herself and has severe epilepsy. Until now, she has enjoyed five days a week at a disability service that fills her day and allows her family to get on with their lives. Ms Watt now has to move. Families who now face a disruptive shift are distraught. Ms Watt’s mother said other nearby services were inappropriate, especially since they could only take her daughter three days a week, rather than five. She said she told the Minister for Disability Services, “They don't become normal for two days”. [“Parents fear for disabled children”, 28th July 2006]

Qualitative findings: Outcomes “Dementia a huge challenge for Down carers”, “Family says postponements caused

more agony”, “Lack of provision for aged care a national disgrace”, “Mother has suffered enough”, “News of daughter's illness devastated parents, inquest told”, “Nothing to live on”, “Pleas of a grieving man as his brother's living hell ends”, “Searching for a light to dispel the darkness”, “The cruelty of kindness”, “The land that hope forgot”, “Trapped in a system near collapse”.

Slowly, we found out what help was available and learned new ‘tricks’. As the weeks progressed, it was clear Mum intended to be the sole carer. So I learned to adjust my caring to waiting, anticipating, listening, and being there... I watched from the sidelines as the trust between my parents deepened even further, but I came to realise she was also trusting me not to interfere in this, her biggest challenge; as I was trusting her to be able to recognise when to allow others into her private realm. My father died early in the year. Their wish had been filled - my father had remained at home and she had been the sole carer. [“Careful with care”, 21st April 2005]

His career was firing with roles opposite Cate Blanchett. In 1997, Vincent came to Sydney and Pedersen became Vincent’s full-time carer. After six years, Pedersen realised he couldn't go on as a full-time carer. Fortunately, he had been seeing a film producer and her mother offered to be Vincent’s carer. [“Circuit breaker” 23rd Nov 09]

Discussion and implications

Discussion– The findings show a clear distinction in how caring for someone with

(versus without) a disability is depicted in the news media

Implications– For carers

– For organisations, employers and co-workers

– For government, non-governmental organisations and policymakers

– For future research