Behaviour change as an explanatory framework for the uptake of self-care

The Transtheoretical model of behaviour change (TTM) [13] serves a framework with which to analyse the individual barriers to behaviour change. The TTM maps behaviour across 5 main levels: 1) precontemplation, 2) contemplation, 3) preparation, 4) action, and 5) maintenance, and a subsequent possible phase of relapse. Self-care is an individual level intervention with which the disability burden of leprosy can be addressed; however, many psychological and practical barriers to the practice of self-care exist [14]. Previous research has identified barriers at different levels of the TTM. Within precontemplation, poor knowledge surrounding self-care may act as a barrier [15,16]. Stigma associated with leprosy [17,18] may be theorised to keep patients in the contemplation stage of the TTM as participating in self-care may disclose their disease status. The consequences of leprosy itself may also present a barrier once patients reach the action phase due to limb disability impairing the ability to dress and bandage wounds or perform self-examination, furthermore the worsening or continued impact of disabilities may serve as a barrier within the maintenance phase [2]. Additionally, a lack of clean water or appropriate equipment is present in many endemic communities [19,20].

Mapping current self-care interventions to the level(s) of the TTM they target can provide an inventory of interventions for different stages of the TTM process. Although self-care interventions for leprosy have been previously investigated by two scoping reviews [6,21], these reviews investigated different themes. Casado et al. [21] investigated community programmes more broadly and Ilozumba and Lilford [6] focussed on ulcers rather than on disability. This review will therefore seek to document current self-care interventions addressing physical disability for those affected by leprosy and analyse how they address behaviour change within the TTM. Highlighting promising interventions can support clinicians in low-resource settings in advising their patients on what to prioritize in their self-care.

Aims

This study aims to

1. Describe the contents and effectiveness of self-care interventions addressing physical disability in leprosy and evaluate which level of the TTM the identified interventions address
2. Summarise what specific self-care advice is provided for the hands, feet and eyes of those affected by leprosy
3. Summarise information available about the cost to implement the interventions in the provided setting.

Design

A systematic review, following the PRISMA guidelines [22], will be carried out to synthesise evidence on what self-care interventions for the monitoring, prevention and reduction of disability exist for people affected by leprosy, and to collate available information about which of these interventions include eye, hand and feet specific advice and information about cost to implement the intervention. The PRISMA – P checklist is attached as S1 File and the section in which each point is addressed is bracketed at the end of the relevant checklist item. Start date: 11 August 2025. End date: 30 November 2025. Record screening complete by October 30th^st. Data extraction will be completed November 15^th. Review finished November 30th.

Search strategy

An automated search will be completed in PubMed, Medline ALL, Web of science Core Collection, Embase, LILACS and SciELO. The MeSh terms for PubMed will be generated based on the PICOS criteria outlined in eligibility criteria and then translated to the other databases.

The search will encompass the following broad categories

1. Leprosy
2. Self-care

We will search for studies that address self-care interventions as defined by the WHO for those affected by leprosy, no geographical or date limit will be imposed.

Terms describing leprosy – S1: leprosy OR Hansen’s disease

Terms describing Self-care - S2: Self-Care OR self-management OR self-treatment OR self-treatment OR self-efficacy OR peer support OR patient empower* OR Self-examination OR self-guided care

S3: S1 AND S2.

The search process will be presented in a PRISMA flow chart to indicate how many hits were retrieved from each included database and the inclusion/exclusion justification for full text screening.

Proposed search strategies are provided in detail in S2 File.

Eligibility criteria

There will be no restrictions on publication dates, language, or geographical location. Where possible the English language abstract will be reviewed, if the manuscript or abstract is in a language other than that spoken by the included reviewers it will be translated to English and reviewed. Studies will only be included where a self- care intervention, using the WHO definition of self-care, aimed to prevent, monitor or reduce leprosy related physical disability. The definition of self-care for this manuscript was the WHO definition of “the ability of individuals, families and communities to promote health, prevent disease, maintain health, and cope with illness and disability with or without the support of a healthcare provider.” [8].

Original peer reviewed research using either qualitative, quantitative, or mixed method approaches will be eligible for inclusion.

The PICOS criteria [23] used for this study will be:

Population – People affected by leprosy;

Intervention – a self-care intervention designed to reduce the impact of, monitor the progression of or prevent the occurrence of a physical disability associated with leprosy;

Comparison – what did the researchers conclude regarding effectiveness, applicability and cost to implement such interventions. Which level(s) of the TTM do the identified interventions target;

Outcome – reported results of intervention in regard to monitoring, preventing or reducing disability in those affected by leprosy, cost to implement intervention and eye, feet and hand specific advice provided;

Study type – Original, peer-reviewed research encompassing qualitative, quantitative and mixed-methods studies. Meta-analysis and review papers will be excluded.

Data collection and management

Data will initially be maintained and managed using endnote referencing software. Duplicates will be manually excluded using endnote before transferring the articles to Rayyan [24]. At least two authors will then complete both title and abstract screening using Rayyan’s “blind” function, whereby if at least one screener identifies a paper as potentially relevant it will proceed to full text screening. Full text screening will then be carried out individually by at least two authors before discussing discrepancies, after which if consensus cannot be reached it will be mediated by the senior author. The included articles will then be then reviewed independently by at least two authors, and information collated and tabulated on a standard form for all papers attached as S3 File.

Data extraction and analysis

Data extraction will include setting, sample, study design, self-care intervention/techniques studied, measures provided by researchers, effects, this is summarised in S3 File). Cost of intervention if available will be summarised in a table that will be attached as an appendix attached as S4 File, specific eye, feet and hand advice will be summarised in a separate appendix attached as S5 File. This will initially be completed independently by two authors before a consensus is reached by all authors following discussion on what data to include in the table. Interventions will then be thematically analysed and mapped onto the TTM after the results have been analysed. This will include what level(s) of the TTM are addressed or targeted by the included intervention and how the intervention identified does this.

Risk of bias

In keeping with PRISMA guidelines each paper will be screened for independent bias. CASP checklists [25] will be used to screen for any potential bias, this will be carried out by at least two authors before discrepancies will be addressed by the senior author.

Dissemination plan

The final manuscript will be submitted for review and publication in leading journals of NTDs and global health. Findings relevant to future practice in leprosy programmes will be disseminated to relevant practitioners through its publication and/or submission to conferences.