“You have cancer.”
These three words change a person’s life, but also the lives of many around them. On receiving such a diagnosis, the patient, their family, relatives, friends, neighbours, colleagues and managers all have questions. The healthcare system takes care of the medical treatment, but who looks after everything else?
“Cancer changes many aspects of life for everyone affected by the disease – at home with the family, at work and in other social contexts. We have therefore taken a new approach to how various resources and responsible authorities can join forces and develop the psychosocial support together,” says project manager Carina Mannefred from Regionalt Cancercentrum Väst (RCC Väst), the regional cancer centre in west Sweden.
The pilot project is the result of unique collaboration involving patients, their families, RCC Väst, researchers from Chalmers, politicians and civil servants from Region Västra Götaland and representatives from a range of social welfare institutions and the business community in Borås.
The initiative comes from people affected by cancer via RCC Väst’s Patient- och Närståenderåd, a regional council of cancer patients and their families who share their experiences and opinions of healthcare. Over 18 months the collaboration partners have met in design workshops and dialogue sessions to bring needs, requests and solutions to light. Study visits to support centres in the UK and Denmark have also been made.
“The project is unique thanks to its co-creative approach: it is the result of collaboration between all relevant players in society together with the business community and the patients,” says Senior Lecturer Andreas Hellström at Centre For Healthcare Improvement at Chalmers University of Technology, who is leading the scientific part of the project regarding Kraftens Hus Sjuhärad.
The non-profit organisation Kraftens Hus Sjuhärad was founded after the series of workshops. The premises are in Borås, but the support centre is for people affected by cancer throughout the whole of Sjuhärad: patients who are undergoing or have completed treatment and their families.
Kraftens Hus is being partly funded through an annual grant from the Healthcare Board in Region Västra Götaland for three years and partly through sponsorship. This is a user-driven activity, which will be designed and developed on the basis of the visitors’ needs and requests.
The opportunity to meet others in the same situation is key, but the centre also aims to a hub for information and activities by important welfare entities such as healthcare providers, the Swedish Social Insurance Agency and the Swedish Employment Service.
Project that gives strength. Pia Bredegård has been declared free of her breast cancer and will work half-time at Kraftens Hus. Leine Persson Johansson lives with chronic lung cancer and is a patient representative on the board. “Ever since the day I entered the hospital I have felt extremely alone with my diagnosis and have asked about possible contact with others affected, perhaps a mentor system. Wow, it feels great to be part of launching such an activity now!” Leine says.
The goal is to supplement healthcare and provide emotional, social and practical support. Examples of other activities may include painting groups, discussion groups for children, yoga and walking groups, presentations on various themes and advice to managers on how they can support an employee who has cancer. The hope is that over time the model will reach the entire region and the rest of Sweden.
“It’s not our intention to take over the healthcare system’s responsibility for cancer rehabilitation, but instead to be a supplement and offer activities that the system doesn’t have. Kraftens Hus will be a meeting place, where both patients and their families can meet other people in similar situations and chat in an informal context,” Carina Mannefred says.
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