Family matters: an exploratory study of the influence of parental chronic renal failure on the family and the information needs of the children

Abstract

Seven families took part in a phenomenological study to consider the effects on family life when a parent has chronic renal failure. This is a topic which has not attracted much attention, possibly because the incidence of renal failure increases with age, and as such, young families where there is parental chronic renal failure do not make a major contribution to the workload of a renal unit. Therefore their needs are not necessarily to the fore.

In looking at family life there is an acknowledgement of the fact that, for the majority of people, there is a life outside their chronic illness and hospital appointments and there is a need therefore to incorporate this other life into planning their care. It is therefore suggested that a worthwhile approach would be that of family centred care, more commonly seen within the paediatric domain, but here taken from the view of the adult at the centre, rather than the more usual centrality of the child.

From the study three central themes emerged:
· Normality in family life
· Living with uncertainty
· Protecting the family.

Overarching these themes the ‘life view’ of the parents was important. This is a common thread in all the themes and affects the way in which the parents approach their life. This, in turn, affects how the children from this study are involved in family discussions, about the influence of chronic renal failure on their family. This ‘life view’ fits well with Paterson’s (2001) shifting perspectives model of chronic illness. In this study it is argued that to meet the needs of the family the information provided needs to be congruent with the ‘life view’ of the parent. This, combined with a family centred approach, is the best strategy to facilitate the sharing of information with the children.

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