Meeting the Needs of Culturally Diverse Caregivers in Australia

Dr Janelle Levesque & Prof Afaf Girgis

Psycho-oncology Research Group

Centre for Oncology Education and Research Translation

Ingham Institute for Applied Medical Research, UNSW Medicine

CONCERT is funded by the Cancer Institute NSW

Presentation Outline

• Cultural caregiving in context

• International research – what do we know about

the experience of culturally diverse caregivers?

– Dementia

– Stroke and Traumatic Brain Injury

– Cancer

• National research – How are we doing in Australia?

• Can we improve outcomes for culturally diverse

caregivers?

The Context of Cultural Caregiving

• 26% of Australian residents born overseas

• 18% speak a language other than English at home.

• 85% of migrants to Australia settle in urban areas

• 620, 000 caregivers born overseas (≈ 23% of all

caregivers in Australia).

• ≈ 60% were born in a Non-English speaking

country.

The Context of Cultural Caregiving

• Culture: Shared values, norms, beliefs and

practices that guide the thinking, behaviours and

decisions of a group (Pickett, 1993).

• Culture is not static, but rather dynamic.

• Across all cultures, caregivers are most likely to

be female.

• Culturally diverse caregivers are LESS LIKELY to

use support services.

Cultural Differences in Caregiving

Collectivism:

– Central concept = extended family

– The needs of an individual are subordinate to extended

family responsibilities

– Characterised by closeness and interdependence

Individualism:

– Central concept = individual or nuclear family

– Needs of the individual or nuclear family are promoted

over the extended family,

– Characterised by loose bonds, autonomy & independence

Cultural Differences in Caregiving

BUT – the evidence suggests that people from ALL

cultures are providing care.

WHY?

Ethnic minority carers more frequently suggest or

endorse cultural explanations of caregiving.

Cultural Differences in Caregiving

African American Caregiver: (Dilworth-Anderson et al. 2005)

“It is what my people have always done.”

South-East Asian Caregiver: (Jewson et al. 2003)

“Our tradition to look after elders, it is in our

blood”

White British Caregivers: (Willis, 2012)

“I’m just one of those people, I just help.”

“I just like doing it.”

Cultural Differences in Caregiving

Cultural norms lead to different EXPECTATIONSabout caregiving, different caregiving

BEHAVIOURS and different RESPONSES tocaregiving demands.

Filial responsibility: A desire to look after family

members, linked to a feeling of reciprocity.

Filial obligation: Cultural values that demand

caregiving for family members.

Cultural Differences in Caregiving

Coping responses

For culturally diverse caregivers the following coping

behaviours may reduce strain:

oAcceptance of role

oSpirituality, blessing and prayer

oKarma

oUse of informal support

Acculturation: The process of adopting the cultural

traits or social patterns of another group.

What do we know about culturally diverse caregivers?

Dementia Carers

• The experience is influenced by how a cultural

lay conceptions of the disease.

• Later presentation of the disease to services.

• Challenges faced by CALD dementia carers: o Stigma that inhibits openness presents as a barrier to

accessing help

o Stigma exacerbates stress and shame

o Limits to support received from family members

o Language barriers and lack of culturally sensitive information

o Lack of awareness of programs and limited culturally competent services

Cultural Similarities and Differences in Dementia Care

Vickery et al. (2007) Cross cultural examination of dementia

caregivers

• Increased family conflict and tension (Sun et al. 2012)

• Somatization of emotional distress (Sun et al. 2012)

Similarities Differences

Responsibilities and activities of

caregiving

Stigma associated with dementia

Worry about the person with

dementia

Discrimination and language barriers

to services and information

Unmet information needs about

dementia

Spirituality and religion as a coping

response

Unmet needs about resources to

assist with caregiving

Identification of benefits in

caregiving experience

Cancer Carers

Caring for a child with cancer (Martinson/Leavitt et al. 1999)

• Key differences:

oExplanations of illness

oChinese families used alternative medicines

oChinese families reported more isolation and used

fewer external resources

oCaucasian parents were stronger advocates for

their children

oDescribed the emotional impact differently

oUsed different techniques to support children

oChinese did not discuss cancer with the child or

their siblings.

Cancer Carers

• Profile of an culturally diverse cancer caregiver

(USA): (Siefert et al. 2008)

oYounger

oFemale

oRarely a spouse

oFrequently have other dependents

oLower income

• How do they differ from White caregivers?

• Higher feelings of sadness

• Increased burden linked to lack of family support

• Higher financial and employment related burden

Cancer Carers – Unmet Needs

Kim et al. (2009) examined changes in family caregivers

unmet need over 5 years.

Time 1: Within 2 months of diagnosis

Caucasian carers reported higher unmet needs in regards topsychosocial, medical and daily activity domains.

Time 2: 2 years post diagnosis No differences between groups

Time 3: 5 years post diagnosis Ethnically diverse carers report higher unmet needs in the medical and financial domains.

What do we know about culturally diverse caregivers in Australia?

Mental health studies Poon et al. (2015) – Caregivers of people with psychosis

Qualitative findings (Poon et al. 2013; Rooney et al. 2006)

• Mental health of carers: nervousness, anxiety, moodiness, poor sleep, stress, uncertainty and hopelessness

• Lack of support: from health care providers, from community and from family

• Dissatisfaction with care: treatment, information, efforts of staff

Variable Population Norm CALD caregiver

Psychological

distress

17.7% 28.9%

Social isolation 2% 34.7%

What do we know about culturally diverse caregivers in Australia?

They may NOT have a lot of family and extended

community support:

• Feeling pressured from family, or expected to care

“Prisoner in my own home” Greek Australian Carer (Morse

& Messimeri-Kianidis, 2001)

• Conflict within families

“Sometimes I tell my husband’s brothers and sisters, but they don’t help me. Sometimes they get cranky to me. They go crook on me. So I keep it inside my heart you know. I can’t talk to someone.” Chinese carer (Hiedenreich et al, 2014)

What do we know about culturally diverse caregivers in Australia?

They may NOT have a lot of family and extended

community support:

• Lack of family networks to enable individuals to take on

primary care responsibilities.

• Lack on contact with their ethnic community:

o31% carers vs. 90% non-carers having contact with

Greek community.

o70% of carers reported no contact with ethno-

specific services

What do we know about culturally diverse caregivers in Australia?

“The notion of a closely meshed, ethno-specific community available and willing to provide succour and support to its needy

compatriots was not supported.”

(Morse & Messimeri-Kianidis, 2001)

Can we improve the outcomes for culturally diverse caregivers?

Emerging international evidence that IF we can get

CALD caregivers to engage with supportive

interventions, they report improved outcomes.

• Gallagher-Thompson et al. (2010): 12 week CBT

skill training program on DVD for Chinese

American caregivers. o ↑ Positive affect

o Patient behaviours perceived a less stressful

o Perception that they were providing care more efficiently

o No change in depressive symptoms.

Can we improve the outcomes for culturally diverse caregivers?

In Australia, trial of a dementia awareness program

for Chinese and Spanish speakers (Leone et al. 2012).

Outcome Chinese Spanish

Depression – Pre 10.00 15.67

Depression – Post 5.60 8.33

Anxiety – Pre 7.00 14.50

Anxiety – Post 3.60 6.67

Stress – Pre 14.00 23.00

Stress – Post 8.60 11.17

Can we improve the outcomes for culturally diverse caregivers?

Simplify and promote existing services and aid (Shanley et al. 2012)

“It’s important to point out that it is disjointed

and that if you don’t do your own research it’s a

really hard system to navigate … if you end up

getting someone who doesn’t give you that

information years go by and you didn’t know

that existed.” (Italian family caregiver)

Can we improve the outcomes for culturally diverse caregivers?

Increase ethno-specific services and improve

cultural competence within services (Shanley et al.

2012)

• Increase bi-lingual staff

• Staff training in cultural sensitivity

• Mono-lingual staff training in basic phrases and non-

verbal communication

• Flexible visitation arrangements

• Cultural considerations for meals and activity programs

• Partnership with family members

Janelle Levesque

PH: 02 8738 9244

j.levesque@unsw.edu.au

Centre for Oncology Education and Research Translation (CONCERT)

Ingham Institute for Applied Medical Research, UNSW Medicine

Contact Details

CONCERT is funded by the Cancer Institute NSW