Friday, September 18, 2009

Consumer experiences of self managing chronic conditions

In August HCCA facilitated a workshop of around 50 consumers on behalf of the ACT Division of General Practice (ACTDGP). This workshop is part of Interprofessional Learning Project currently underway involving ANU and the ACTDGP.

Consumers were asked specifically about what helps them to self management their chronic conditions and what barriers they encounter in their self management. Participants worked in table groups to share their experiences and document their ideas.










A number of speakers also gave presentations to participants.

Russell McGowan (Pictured) talked about the national level reform in chronic conditions and also talked about his involvement with the Consumers Health Forum project on developing resources to support people to self manage their chronic conditions

Judy Stone, told the participants about the Interprofessional Learning programs currently underway in ACT Health

Other speakers included Susan Abbott (ANU), Amanda Plowright (SHOUT), Ann Thomson (RSI and Overuse Injury Association) and Jo Stewart, a peer leader for the Living a Healthy Life with Chronic Conditions workshops.

Enablers

Knowledge of the system and their condition were identified as important enablers for consumers. Working with a doctor who is knowledgeable about the condition, treatment options and available supports was also important. Research, particularly using the internet, was mentioned as were self help courses as a way of gaining knowledge.

Some existing services were identified as significant enablers for managing chronic conditions: Job Access, psychology services, hydro pools and other services sere identified as desirable. Good medical services particularly GP services were also identified as enablers.

Participants identified the need for appropriate design for people with chronic conditions.

Participants repeatedly identified support from others, groups, families, friends, as important enablers for management of chronic conditions.

When communication channels are respectful, informed, inclusive and personable they were seen as enabling the management of chronic conditions. Effective communication between health providers facilitated by good record keeping was also identified.

Participants identified good treatment and plans to treat as important in enabling them to manage a chronic condition. This plan could include lifestyle factors. A multi pronged or holistic approach was mentioned.

Having plenty of money was identified as an enabler to self managing a chronic condition.

Participants identified that a positive attitude and determination are useful enablers.

Barriers

Participants were very vocal about the need for health professionals to interact with them as people first. They want respectful, honest, considered and comprehensive communication about their situation.

Lack of Medical Profession Knowledge about chronic conditions was seen as a barrier to the management of those conditions and the variation between doctors knowledge was raised by participants.

Participants recognized that they needed to be well informed about their chronic conditions, however they were struggling to gather reliable information which would help them to successfully manage their chronic conditions. They were also concerned about the level of general knowledge in the community about chronic conditions.

The shortage of doctors in Canberra both GP’s and specialists was seen as a barrier to managing chronic conditions. This was reflected in many comments about waiting times to see doctors.

Participants identified specific areas of service deficit as a barrier to managing chronic conditions. These included, interpreter services, hydro therapy, rehab gyms, well resourced support groups, advice advocacy services, and service closures.

Carers were recognized by participants as central to their ability to self manage their chronic conditions and when carers were not available self management was threatened.

Participants were acutely aware of the need to provide well designed, accessible public spaces and transport and that when this did not exist it was a barrier to managing chronic conditions.

Poor dental services were identified as a barrier to self management of chronic conditions.

Isolation from community was a concern for participants.

Participants repeatedly highlighted the added costs associated with managing a chronic condition: home help, medication, therapy, tests and medical visits. Loss on income was also mentioned. Several participant also mentioned their concerns around transparency in decision making around the cost of ordering tests and intervention.

Participants were frank about their concerns about their experiences where they perceived a power imbalance in their interactions with the medical profession in managing their chronic conditions.

A report is currently being finalised for ACTDGP and will be available on the HCCA website soon.

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