Raising children with profound intellectual and multiple disabilities is considered to be extremely difficult for parents, but figures on the content and amount of time needed for the caring task of parents is lacking. Data on what the caring task actually means (in terms of amount of time and type of task) is needed to be able to understand the parents' support needs. A questionnaire was developed in order to collect information about both the caring task and the level of parental burden concerning health-related tasks and basic need tasks such as eating and drinking, dressing and sleeping. Furthermore, the level of support parents experience from friends, relatives and special services is included and the use of special aids and resources is taken into account. A total of 133 parents completed the questionnaire. Most children are dependent on them for meeting all their basic needs and have several health problems. Significant relationships were found between the number of times parents have to get up at night and the level of burden at night, and between the days a child stayed in hospital and the level of parental burden. The results indicate that the caring task places heavy demands on parents. Professional support is alleviating and extremely important for parents. The caring task is not necessarily indicative for the subjective burden parents experience. Parents of young children express higher levels of burden than parents of older children. (Contains 4 tables.)