To be a significant-other for a person with an incurable long-term illness
Anne Marit Sand, Section of Nursing Sciences, University of Bergen
Abstract
In spite of advances in cancer research and treatment, many patients cannot be cured . After long and intense treatment they might have to go home fully aware that recovery is impossible. At this stage only palliative treatment can be offered. Every year 10 000 people die of cancer in Norway.
Whenever a person becomes seriously ill, it will also affect the family. Most of us want to stay at home as long as possible. This will, however, mostly depend on having relatives or friends willing and able to take responsibility and care for the patient. This is also true when families receive help regularly from home-care services.
The focus for this study is:
To be a significant-other for a person with an incurable long- term illness
Before my research I focused on two major points:
- I wished to meet the significant-others with an open mind in order to understand their everyday experiences caring for a seriously ill person.
- Having aquired this knowledge I wished to find out how health personell can ease the burden of daily care and make it more secure.
The study was conducted using Grounded Theory, an inductive qualitative method.
Qualitative interviews are used to collect data. The significant-others taking part in the survey are responsible for the care of a patient staying at home suffering from
- Advanced incurable cancer or
- Amyotrophic Lateral Schlerosis (ALS).
Elleven significant-others, who are considered as the "next of kin" by the patients, take part in this survey.
The most important findings of the survey can be summed up in the following:
- Significant-others are willing to go to considerable lengths to enable the patient to stay at home
- The need for and the lack of information and consultations during the illness is very great
- Significant-others are in close contact to many and wearisome symptoms
- The responsibility for care often becomes a lonely task for significant-others
- Significant-others do not often share their experiences with other people
- Significant-others are often overlooked by health care personnel
- Responsibility for care often becomes a 24-hour task, with little relief
- Significant-others are often worn out both physically and psycologically
- Significant-others of an ALS-patient taking part in the ALS project, experience to a large extent having professional support during the illness
Conclusion of survey:
- Health care pesonnel must to a larger extent Be aware of significant others. This is first and foremost to demonstrate that we assume professional responsibility and willingness to follow up
- The responsibility for care can often become too much, too difficult and lonely considering what we could do to ease the burden of being a significant-other
- The survey shows that the best way to help families of patients suffering from far advanced incurable illness is to have regular multi-professional meetings at home where the patient and the significant-others are part of the team
- Health care personnel must let the significant-others understand that they also are part of our professional responsibility. Professionals must to a greater extent treat significant-others as important co-operatives in our common aim: Good care and following up of the patient. A change of attitude amongst health care personell seems necessary. In cases of serious illness, they must to a greater extent focus on the family as a whole, and not just on the patient.
Keywords: Significant-others, next of kin, family, Amyotrophic Lateral Sclerosis (ALS), advanced incurable cancer.
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