Examining the effects of acquired limb loss on the family network: a grounded theory study

Background: Children and adults with limb loss acquired through disease or trauma, are faced with a range of physical and psychological challenges. Their family networks become an important platform for coping and recovery to occur, although little is known about the experiences of these networks. The small amount of research so far has only examined the views of spousal and parental carers. Aims: This research aimed to: 1) explore the experiences of family networks following a limb amputation within their family; and 2) to develop a theoretical model to explain how the family network experiences the limb loss. The use of ‘network’ was adopted to include kin identified as family, without legal or biological ties. Method: Data collection and analysis were guided by the Grounded Theory method. Members of the family networks (n = 14) were recruited nationally and interviewed over Skype or telephone. Interviews were conducted in a process moving from unstructured to semi-structured and structured interviews. Findings: A theoretical model was developed around the interaction of five core categories. Family members witness the perceived difficulties faced by the person with limb loss, leading to an evoked responsibility to provide support based on this witnessing. Families subsequently experience the shared impact and challenges of limb loss; together with numerous emotional reactions. This leads to the use of various forms of coping in order to resolve these experiences and associated emotions. Conclusions: Families are involved in the processes and challenges following on from an amputation in another family member, regardless of gender, relationship structure and type of amputation. The theoretical model can be understood through the integration of ideas from systemic theory and social psychology. The issues identified must be considered in services, to support families who aid recovery following on from an amputation.