Searching for the meaning of support in Nursing. A study on support in family care of frail aged persons with examples from palliative care at home

Sammanfattning: Family carers perform a large amount of the help and assistance that are provided for Swedish frail aged persons who live with one or more chronical illnesses. Consequently, in addition to balancing the Swedish national welfare expenditures, family carers also contribute to the care for older persons in many ways. Parallel to the above, an increased interest for family carers situation can be discerned from research as well as from political decisions. Within these interests, the word support is recurrently used both nationally and internationally. However support for family carers may prove to be a more complex endeavour than it appears. Although there are research in support for family carers, the concept of support remains complex and difficult to conceptualize. It is not unreasonable to assume that the word support can shift meaning across areas where it is used. In nursing, support is highlighted in situations where family carers care for a frail aged person at home. Support is likely to continue to be of importance in these situations as there are no indications of at-home family caring decreasing. To date, there have been little research into understanding the concept of support in nursing. Therefore, support should be further researched in order to be assigned a fruitful and useful meaning. From the general ongoing debate in Sweden on family carers it is easy to conclude that support is “something” that family carers should have or be given. However, it is not as easy to discern who should support family carers, or what the support should entail. As the focus on care for frail aged persons continuously moves towards peoples own homes, it is plausible that nurses will continue to play an important role between informal and formal care provision. Nurses can be expected to be one important group of healthcare professionals that are expected to provide support for family carers even in the future. Proceeding from the above description, this thesis was undertaken with the overall aim to describe, illuminate and understand meanings of support within the nursing context of family care for frail aged persons, as disclosed by family carers, registered nurses and scientific literature. In order to be able to understand meanings of support, it was decided to proceed with the empirical studies in this thesis using a palliative care context. This decision was based on the assumption that the palliative care context would be appropriate for describing meanings of support. Through the four papers underpinning this thesis, the concept of support and its meaning have been studied from differing viewpoints assisted by differing research methodologies. Family carers have narrated on the meaning of support and registered nurses have narrated on the meaning of being supportive. Moreover, the scientific literature was thoroughly searched, synthesized and conceptually analyzed in order to describe, explain and understand the concept of support. The findings from this thesis showed that support in nursing entails two essential dimensions. They were labelled the “tangible dimension” and the “intangible dimension”. The tangible dimension overarchingly represent different services, goods, equipment, information and/or education that, on a general level, can be provided for family carers. The intangible dimension overarchingly is about the quality of the relationship between the family carer and the support provider person. The intangible dimension can be further understood through relationship qualities such as trust, confidence and/or friendship. It moves at a more individual and adaptive level than the general tangible dimension. However, it portantly appears that these two dimensions do not stand in opposition to each other as a dichotonomy. Instead, these two dimensions appear to be co-dependents and essentials for support to gain meaning in nursing.