Understanding supported self‐management for people living with a lower‐grade glioma: Implementation considerations through the lens of normalisation process theory

Ways Ahead Study Team, Ben Rimmer*, Tracy Finch, Michelle Balla, Lizzie Dutton, Sophie Williams, Joanne Lewis, Pamela Gallagher, Richéal Burns, Vera Araújo‐Soares, Fiona Menger, Linda Sharp

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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Abstract

Background
Supported self-management can improve clinical and psychosocial outcomes in people with cancer; the considerations required to implement self-management support (SMS) for people living with a lower-grade glioma (LGG)—who often have complex support needs—are not known. We aimed to identify and understand these implementation considerations through the lens of normalisation process theory (NPT), from the perspectives of healthcare professionals (HCP) and people with LGG.

Methods
We conducted semistructured interviews with HCPs who support adults with brain tumours (n = 25; 12 different healthcare professions), and people with LGG who had completed primary treatment (n = 28; male n = 16, mean age 54.6 years, mean time since diagnosis 8.7 years), from across the United Kingdom. Interviews were transcribed and inductive open coding conducted, before deductively mapping to constructs of NPT. We first mapped HCP data, then integrated data from people with LGG to explore alignment in experiences and perspectives.

Results
We generated supporting evidence for all four NPT constructs and related subconstructs, namely: ‘Coherence’, ‘Cognitive participation’, ‘Collective action’ and ‘Reflexive monitoring’. Data from HCPs and people with LGG clearly demonstrated that effective SMS constitutes a collective activity. Key implementation considerations included: ensuring awareness of, and access to, support; building strong HCP-support recipient relationships; and careful inclusion of close family and friends. We identified pertinent challenges, such as identifying support needs (influenced by the extent to which those with LGG engage in help-seeking), resistance to support (e.g., technology literacy), training for HCPs and HCP cooperation.

Conclusions
This study demonstrates the collective nature of, and provides insight into the individual roles within, supported self-management. We outline considerations to operationalise, sustain and appraise the implementation of SMS for people with LGG.

Patient or Public Contribution
People with brain tumours, and informal caregivers, were involved in the development of information materials and topic guides to ensure accessibility and pertinence. They also had opportunities to comment on interview findings.
Original languageEnglish
Article numbere14073
Number of pages20
JournalHealth Expectations
Volume27
Issue number3
Early online date11 May 2024
DOIs
Publication statusE-pub ahead of print - 11 May 2024

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