Caring and coping: The family experience of living with loss of limb use

Abstract:This research examines how veterans and their families adapt to living with acquired loss of limb use. It is difficult to estimate the number of UK veterans who are living with acquired loss of limb use. We do know, however, that 401 are beneficiaries of Blesma (November 2024). On looking at the wider literature (see Appendix 1), it became apparent that there needs to be more focus on the experiences of families. Most research tends to focus on loss of use in specific conditions, such as spinal cord injury, with the emphasis placed on the negative experiences of being an informal carer. While this research is helpful, it does not align with findings from our previous research Caring and Coping: The Family Experience of Living with Loss of Limb(s) (CC1), which indicate that the family does not necessarily consider themselves an informal carer for the veteran or consider their supporting role negative. Therefore, this research aimed to learn from veterans and their families about their everyday experiences living with acquired loss of limb use, to inform what support might be needed. To do this, we invited Blesma members with loss of limb use and their families to tell us about their experiences (84 in total). It is important to mention that this research has a positive outlook on learning from veterans and their families who are dealing with their loss of limb use. In doing so, this report identifies the diverse spectrum of needs associated with loss of use of limb that do not fit neatly into one category, details that individual and family needs shift and change, and importantly, that no-one talks about how current and future needs can be identified and potentially mitigated. Importantly, the report reveals the hidden parts of living with loss of limb use, and what people do to manage this in their daily lives, and in doing so, the participants told us that the central problem they are managing is the uncertainty that can accompany loss of limb use. Uncertainty refers to a state of being unsure about one’s everyday wellbeing, which can often change and fluctuate. Change can be short-term, such as having a bad cold, or long-term, such as limb deterioration, emotional/mental wellbeing, chronic pain, or changes in bowel/bladder functioning. It is uncertainty that ripples across the family, potentially causing disruption to their everyday living. Thus, managing uncertainty becomes a crucial concern for the family. This research documents four types of uncertainties experienced and describes how these challenges affect the family and impact their everyday lives in areas such as employment and schooling and bring accompanying worries about finance and long-term housing needs. As a result of this, an Understanding Uncertainty protocol has been developed, with the aim to help people identify what types of uncertainty impacts them, and how it might be better managed and to think forward about how to actively manage possibles in the future. Alongside, the research details how difficult it is to talk about their worries and because of this, individuals are not planning the process of ageing with loss of limb use, and the potential challenges this can bring. As a direct result of this finding, two Safe Conversation protocols have been developed to help people have safe conversations to start to plan for their future. Importantly, this research identifies that families do not necessarily require more support; rather, it details the need for wider society to develop responsive and flexible structures that recognise the demands uncertainty brings to family life. Central within this is the need to enable families to feel safe to have difficult conversations about actual and possible uncertainties within the family itself, with wider health and support services, employers, and educational organisations.This research presents the unique and complex context of the family living with loss of limb use. Importantly, this research details that adapting to living with loss of limb use in the family is a lifelong and continual process. There is no blueprint, and the process is therefore unique to each family, and to everyone within the family. Because there is no single predictable linear support pathway, support needs to be nuanced to the individual’s context. However, for this support to be useful, the role that uncertainty plays needs to be centralised. Uncertainty itself can rarely be predicted; this means that possibles can be foreseen over the life course, but how the individual’s health plays out on any one day cannot. It is living with uncertainty in the everyday that needs to be acknowledged by the individual, the family and wider society. To summarise the findings a short animation has been made that explains the research findings.