Next-of-kin caregivers in palliative home care - from control to loss of control

Aim.  This paper is a report of a study to describe situations influencing next-of-kin caregivers’ ability to manage palliative care in the home.

Background.  Palliative home care often involves major resources from next-of-kin, municipal and county personnel. Next-of-kin caregivers’ situation is depicted as so demanding and exhausting that it can affect their mental health and limit their ability to continue as a caregiver.

Methods.  A qualitative study using the Critical Incident Technique was conducted. Nine next-of-kin caregivers from palliative home care were strategically chosen and data were collected using audiotaped interviews in 2005.

Findings.  The analysis resulted in two main areas: ‘Maintaining control’ and ‘Losing control’. Next-of-kin caregivers wanted to maintain control over their lives by being continuously available 24 hours a day and by supporting and taking complete responsibility for all of the patient’s needs. They lost this control when professional assistance was lacking and they described feelings of inadequacy when their physical energy or time was insufficient. They felt incapable as the patient’s physical or mental persona metamorphosed or as serious symptoms developed that they could not control.

Conclusion.  Next-of-kin caregivers and the patients must feel free to choose where palliative home care will be provided and that their choice at any time can be re-evaluated, due to insecurity or workload changes. When planning for palliative care, they should be informed that having only one caregiver reduces the chances of completing palliative care in the home.