“I’m still me – I’m still here!” Understanding the person’s sense of self in the provision of self-management support for people with progressive neurological long-term conditions

Abstract

Purpose: There is increasing interest in tailoring self-management support, but little detail is available on the relevance and impact of such approaches for people with progressive neurological conditions. The aim of this study was to draw on individuals’ experiences to inform the practice of self-management support for these groups.

Method: Community rehabilitation service users were purposively recruited and took part in in-depth qualitative interviews. Interviews were audio-recorded and transcribed. Data analysis was iterative and interpretative, taking a phenomenological approach. Strategies to enhance rigor were auditability, peer review, and researcher reflexivity.

Results: The sample consisted of 10 adults (age 20–79 years) who were living with a range of progressive neurological conditions. Individuals demonstrated resourcefulness in developing practice-based self-management strategies. Beyond practical strategies, interviewees’ experiences were signified by reflecting on and upholding a sense of identity and a desire for purpose against the background of losses and gains over time. Linking with this overarching theme of “Sense of self” were aspects of “My body and mind”, “Time”, “Space”, “Relationships”, and “What I do”.

Conclusions: Self-management approaches for individuals with progressive neurological conditions will benefit from incorporating ways of recognizing, articulating, and supporting the person’s sense of identity and purpose.

Implications for rehabilitation

• Self-management approaches for people with progressive neurological conditions need to take account of individuals’ wishes to contribute, connect with others, and be valued as a person.

• Person-centred self-management support can be realized through a broader approach than solely managing disease progression.

• The experiences and words of people with progressive neurological conditions can be used to inform meaningful evaluation of self-management support to drive service delivery by measuring what really matters.

• Rehabilitation practitioners need to adapt their conceptualisations of goal setting to account for how people with progressive neurological conditions themselves interpret “progress” and “improvement”.

• Person-centred conversation that values who the person is can be an effective starting point for self-management interventions in people with progressive neurological conditions.

Keywords:

• Community rehabilitation
• experience
• goal-setting
• neurological long-term conditions
• phenomenology
• qualitative methods
• self-management support

Acknowledgements

We are grateful to the participants in this study, who generously made time, invited us into their homes, and allowed us to hear their thoughts and experiences. We thank the health and social care organizations who enabled this project through their committed collaboration, and the community rehabilitation practitioners who supported us in inviting participants to the study.

Disclosure statement

FJ is founding director and CEO of Bridges Self-Management Limited, a social enterprise conducting training, research, and development in self-management support in health and social care. LH is Director of Innovation and Training at Bridges Self-Management Limited, and SK is a former employee.

Additional information

Funding

This work was supported by the Health Innovation Network (HIN) and Health Education South London (HESL), United Kingdom, under the “Innovation Grant for Developing the Full Workforce 2014”.