The Lived Experience of Older Adults' Adjustment to Lower Limb Amputation From the Perspective of Wheelchair Users.

Abstract

Aim: To present an in-depth description of the lived experience of psychosocial adjustment in older adults who use a wheelchair following lower limb amputation (LLA) due to vascular disease. In particular, to report on the experiences of positive psychosocial adjustment of individuals which may be useful to clinicians who want to facilitate positive psychosocial adjustment in their patients. Background: Amputation is a significant consequence of vascular and diabetic disease affecting elderly adults. Elderly adults undergoing LLA face challenging experiences of impaired mobility in addition to chronic co-morbidities. Rehabilitation for older adults includes optimising mobility with prostheses or wheelchairs. Using a prosthesis has been linked with positive psychosocial adjustment outcomes such as quality of life. Prosthetic training has been well documented in literature however the reported rates of prosthesis use by elderly adults is low due to the energy demands of moving a prosthesis. In comparison, there is little research available on wheelchair training or use for older adults. The effect of wheelchair use on the psychosocial adjustment of older adults with vascular disease is also less understood. A number of studies have examined the experience of adjustment in individuals using a prosthesis however limited research has defined or explored adjustment in individuals who use a wheelchair rather than a prosthesis as their primary means of mobility. Literature regarding adjustment to amputation has traditionally focused on quantitative and negative adjustment outcomes such as depression and anxiety. Positive adjustment outcomes are increasingly being explored particularly using qualitative methods which give voice to those who are experiencing amputation. Qualitative studies have explored adjustment with prosthesis users but the little personal experience of wheelchair users has been explored. It is not clear what the personal experience of adjustment to LLA by older adults who use a wheelchair is like. Method: This study used Interpretative Phenomenological Analysis (IPA) to explore the lived experience of adjustment to LLA by wheelchair users. This study interviewed four elderly men identified through hospital records. All four men used a wheelchair on a daily basis. Two men also used a prosthesis. One man used a powered wheelchair and the fourth man could not move himself independently in his wheelchair, relying on others to move him. Three men lived in their own homes and one lived in a care facility. Data were collected from one recorded semi-structured interview with each participant. Interview transcripts were analysed to identify themes in the participants’ narratives regarding their psychosocial adjustment to LLA in the context of their wheelchair use. Where possible, analysis was returned to participants to check for a “phenomenological nod”. Results: The participants did not directly refer to their wheelchairs when reflecting on their adjustment to LLA. Their adjustment did not appear to be directly influenced by what mobility aid they used but rather the mobility aid provided opportunities for adjustment to occur. Participants’ experiences of adjustment to LLA were described by two themes. The two themes were “Being an Active Agent” and “Psychosocial Adjustment as an Iterative Process”. The first theme of ‘Being an Active Agent’ described three elements of self-efficacy. The elements participants described were: cognitive processing as a coping strategy, self-beliefs and decision-making. Three participants spoke of making decisions with a sense of control, particularly the decision to choose leg amputation. The fourth participant’s narrative of choosing amputation contrasted with the other three participants in that he did not convey a sense of feeling control. Rather, he gave a sense that he felt disempowered both in the decision for amputation and in his daily life subsequent to amputation. The second theme ‘Psychosocial Adjustment as an Iterative Process’ described the iterative and ongoing nature of the participants’ narratives of adjustment to LLA. The second theme also described how the each of the participant’s experiences of adjustment to LLA were not isolated events but firmly linked to previous events of the participant’s greater life story. Conclusion: Rather than what mobility aid is used, the older adult’s adjustment to LLA appears to be influenced by the their sense of being an active agent in the adjustment process particularly in decision-making around LLA. This finding is consistent with similar studies of prosthesis users. Adjustment also appears to be an iterative and ongoing process which older adults continue to engage in after the amputation event. Further qualitative research is needed with a wider demographic to confirm the themes found here, particularly the contrasting experience of one participant. The findings of this study suggest practical frameworks that clinicians can use with older adults undergoing amputation, for example: Acceptance and Commitment Theory, Shared Treatment Decision Making and Structured Problem Solving.