Measuring empowerment among people living with HIV: a systematic review of available measures and their properties

ABSTRACT

A systematic review was conducted to identify and appraise measures of empowerment used in peer-reviewed research with people living with HIV. Thirty articles reporting on 12 scales were identified via keyword and citation searches of electronic databases and hand searching of reference lists. The instruments captured a wide range of constructs, including self-efficacy, perceived knowledge/information seeking, self-management behaviours, belief in an active patient role and tolerance of uncertainty. While the majority of instruments were focused exclusively on self-efficacy to manage HIV, the Patient Activation Measure (PAM-13 and PAM-22) and the Health Empowerment Inventory were broader in scope. Most of the identified measures had acceptable construct validity, however there were insufficient data to determine the reliability or responsiveness of many of the scales. The findings highlight the need for a more concrete definition of empowerment and for further validation of existing measures with people living with HIV.

KEYWORDS:

• Empowerment
• HIV
• systematic review
• self-efficacy
• patient activation

Acknowledgements

EmERGE is a project funded by the European Union's Horizon 2020 Research and Innovation Programme under Grant agreement no: 643736. The dissemination activities within the EmERGE project do not represent the opinion of the European Community and only reflect the opinion of the authors and/or the Consortium. This paper is dedicated to Professor Martin Fisher, our much missed colleague and friend, who died in April 2015. Together with Jennifer Whetham, Martin conceived the idea, designed and secured funding for EmERGE programme. The scientific members of the EmERGE consortium are Adrian Brown; Agathe Leon; Ben Marent; Brian West; Daniel Lockhart; David Garcia; Duncan Fatz; Ed Wallitt; Eduard Beck; Enrique Gomez; Eugenio Teofilo; Eva Gonzalez; Felipe Garcia; Flis Henwood; Goncalo Rodrigues; Jennifer Whetham; Josip Begovac; Koen Block; Letitia Pereira; Ludwig Apers; Margarida Borges; Mary Darking; Paloma Chausa; Sime Zekan; Steven Bremner; Steven Hoornaert, Sundhiya Mandalia. The scientific advisors are Alec Miners; Cesar Caceres; Richard Harding.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

EmERGE is a project funded by the European Union’s Horizon 2020 Research and Innovation Programme [grant agreement no: 643736].