Development of a Conceptual Framework to Measure the Social Impact of Burns

Abstract

Measuring community reintegration following burn injury is important to assess the efficacy of therapies designed to optimize recovery. This project aims to develop and validate a conceptual framework for understanding the social impact of burn injuries in adults. The framework is critical for developing the item banks used for a computerized adaptive test. We performed a comprehensive literature review and consulted with clinical experts and burn survivors about social life areas impacted by burn injury. Focus groups with burn survivors and clinicians were conducted to inform and validate the framework. Transcripts were coded using grounded theory methodology. The World Health Organization's International Classification of Functioning, Disability and Health, was chosen to ground the content model. The primary construct identified was social participation, which contains two concepts: societal role and personal relationships. The subdomains chosen for item development were work, recreation and leisure, relating with strangers, and romantic, sexual, family, and informal relationships. Qualitative results strongly suggest that the conceptual model fits the constructs for societal role and personal relationships with the respective subdomains. This conceptual framework has guided the implementation of a large-scale calibration study currently underway which will lead to a computerized adaptive test for monitoring the social impacts of burn injuries during recovery.

The Impact of Burn Size on Community Participation

“…After successful completion of a screening module, participants were administered the LIBRE-192, which contains 192 items used for field testing of the LIBRE Profile examining several areas of community participation after burn injury. 16,17,29 The development of the 126-item LIBRE Profile from the LIBRE-192 has been described previously. 16 Participants completed the LIBRE-192 in person, over the phone, or online.…”

“…The Life Impact Burn Recovery Evaluation (LIBRE) Profile is a computer-based questionnaire that measures the impact of burn injuries on the social participation of survivors age 18 and above. 16,17 This assessment tool was created based on the World Health Organization's International Classification of Functioning, Disability, and Health Framework 18 with input from clinical experts and burn survivors. 17 The conceptual framework was operationalized to create a 192-item survey, which was administered to 601 adult burn survivors for calibration and psychometric testing.…”

The Associations of Gender With Social Participation of Burn Survivors: A Life Impact Burn Recovery Evaluation Profile Study

“…The World Health Organization's International Classification of Functioning, Disability and Health (ICF) formed the basis of the conceptual framework used for developing the LIBRE Profile. [14][15][16] The LIBRE Profile focuses on the ICF's construct of "Participation," which refers to a person's engagement in a life situation. 17 As outlined in the ICF, participation is affected by bodily functions and structures, as well as the person's health condition.…”

“…For burn survivors, this means that an individual's burn injury and the pain and discomfort it causes are understood to affect the ability to participate in certain areas of life. 14 In addition, personal factors such as gender, as well as environmental factors, may modify these associations. A large population of burn survivors in the United States and Canada was involved in the development of the LIBRE Profile.…”

The Medical Social Worker: A Neglected Ally in the Management of Patients with Burn Injuries

“…These are models of health social work that can leverage healthcare systems to address social and community factors shaping health outcomes (22). Marino et al (23) worked on developing a conceptual framework that would guide implementation of a large-scale calibration study that will provide a computerized adaptive test for monitoring the social impacts of burn injuries during recovery. The intervention of MSW can then be better tailored against such established social impacts when such monitoring tools are available, rather than carrying them out empirically.…”