Chronic Illness



RESOURCE

Chronic Illness Self Management Initiatives: Addressing the Needs of NESB Communities

This resource has been developed for health service providers to consider when working with NESB communities in the area of chronic illness self management

UNDERSTANDING DIVERSITY: research your community and clients to ensure cultural relevance of interventions

• Hold suitable methods of consultation (i.e. focus groups, interviews) with consumers who have a chronic illness to determine cultural perceptions around chronic illness and self management. This will inform culturally appropriate and targeted methods of self-management that reflect the cultural practices and preferences of the ethnic community.

• Understand that ‘self management’ is a relatively foreign concept for many ethnic communities who may be accustomed to being passive recipients of health/medical care.

• Consider that there may be a reliance on medication and a belief that medication is essential to proper management of a chronic illness. Healthy lifestyle concepts and preventative health practices may be foreign to the community.

COMMUNICATING WITHIN DIVERSITY: BE CULTURALLY AND LINGUISTICALLY APPROPRIATE

• Consider health literacy –use of health jargon and medical terminology can be problematic, and some terms have no direct word translation in other languages. Self-management is indeed one of these terms; therefore a sentence or two may be needed to explain some things.

• Avoid overly radical lifestyle changes by focusing on adaptation rather than reinvention as this is much more culturally sensitive

VALUING DIVERSITY: go straight to the source

• Form key partnerships and utilise the resources of a variety of organisations including government agencies, peak bodies, community health centres, ethnic community groups, ethno-specific services and religious organizations

• Draw on the second generation to change attitudes towards illness management and help influence the older generation

• Involve family members in self management interventions as this may assist in uptake

• Utilise a partnership approach by working with ethno-specific agencies/organizations, or community members as peer leaders, in planning, implementing and evaluating self management interventions

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An Italian Experience

For many Italians, intermarriage and integration into Australian society has led to an erosion of the traditional family structure. The younger generation often works full-time and may not live with the extended family. This generation gap can be compounded by a language gap between parents and children, as many older Italians revert back to their original language. Impacting on management of the illness is the dependence on their family to care for them. Older Italians have a very fatalistic cultural attitude towards chronic illness as the cure doesn’t exist and the support is often no longer present. The idea of management, particularly self-management, is pretty much unheard of.

Isolation and loneliness due to widowhood, financial difficulties, poor health, lack of mobility and transport, early retirement, lack of social contacts and networks and disability are common. There can also be a stigma attached to certain illnesses and the use of facilities and services such as aged care homes.

A Maltese Story

There is a common perception amongst Maltese people that diabetes is associated with ageing. Therefore they believe there is little they can do to prevent getting it. There is also stigma associated with the disease. “The stories of amputations and blindness that we knew of make us fear the disease. There is shame associated with publicly revealing you have a disease. So you may hear us say ‘I only have a little diabetes’. Many of us hide the fact we have the disease”.

“I migrated from Malta a long time ago and my English is quite good. My doctor talks to me about my diabetes in English. When she talks to me about everyday things I can communicate with her well and I understand everything she says. But when she talks to me about my diabetes, I can only understand a few words she tells me, maybe 1 in 5. I don’t want to tell her that I can’t understand everything she tells me. I don’t understand why she tells me to change what I’m eating or alter my medication. But I do it anyway”.

A Health Professional’s Experience

‘Chronic illness’ is not a term understood by many NESB groups. It means different things to different people. It means nothing to some people. For example, the Greek equivalent of self management is along the lines of ‘looking after yourself’ and that equals six to seven words in the Greek language. Therefore terminology needs to be explained and discussed.

The NESB community you are running a group for may never have had this mode of learning before. So this is a new way of learning for them. You can’t just take an Anglo model of health care provision or research and expect it to apply to another population just because they live here. You need to engage with community leaders and work with them to amend and adapt it to ‘get the best fit’ for that community. Keep it simple, make it accessible, in a suitable venue, at a convenient time, and ensure that the benefit of the intervention is clear.

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