Cross-cultural validation of the parent-patient activation measure in low income Spanish- and English-speaking parents

https://doi.org/10.1016/j.pec.2016.07.003Get rights and content

Highlights

  • Little is known about parental activation on behalf of their child’s healthcare.

  • We studied the parent-patient activation measure in a general pediatrics setting.

  • Activation was lower among Spanish-speaking parents than English-speaking parents.

  • Psychometrics differed between the parent and patient activation measure.

  • More information on the P-PAM is needed before further application in pediatrics.

Abstract

Objective

(1) To measure healthcare activation among low-income parents by language (English/Spanish); and (2) to assess the psychometrics of the Parent-Patient Activation Measure (P-PAM) in the study population.

Methods

We surveyed parents/guardians of publicly-insured children who were established patients at a pediatrics clinic for ≥6 months. Surveys included the Parent-Patient Activation Measure (P-PAM), a 13-item measure adapted from the well-validated Patient Activation Measure (PAM).

Results

Of 316 surveys, 68% were completed in Spanish. Mean activation score in the English-language survey group was 79.1 (SD 16.2); mean score in the Spanish-language group was 70.7 (SD 17.9) (p < 0.001). Scale reliability was high (English α = 0.90; Spanish α = 0.93). The P-PAM had acceptable test-retest reliability, but no previously reported PAM factor structure fit the study data adequately for either language.

Conclusions

Healthcare activation among low-income parents was greater for parents surveyed in English compared with those surveyed in Spanish. The P-PAM has acceptable reliability and validity in English and Spanish, but a different factor structure than the PAM.

Practice implications

Activation as measured by the P-PAM may not have the same associations with or impact on health/healthcare outcomes in pediatrics compared with adults owing to possible measure differences between the P-PAM and PAM.

Introduction

Patient engagement is heralded as a key component of health system redesign and achieving the “triple aim” of improved health outcomes, better patient experiences, and lower costs [1], [2]. Individual level engagement has frequently been characterized as patient activation. Patient activation is defined as the patient’s willingness to manage their health and healthcare based on understanding one’s role in the care process and having the knowledge, skills, and confidence to do so [3], [4], [5]. Adults with greater patient activation have better health outcomes and report better healthcare experiences [3], [4], [5], [6]. Interventions have demonstrated efficacy in increasing activation with subsequent improvement in health and healthcare quality for adult patients [3].

There is interest in measuring parent activation as an intermediary outcome for interventions to reduce healthcare disparities in children. To do so, a better understanding of parent activation on behalf of the health and healthcare of children is needed. The Patient Activation Measure (PAM), a well-known measure to characterize patient activation, is validated for use across diverse adult populations [3]. This measure has been adapted for use among caregivers of pediatric patients (Parent-Patient Activation Measure (P-PAM) [7], [8]. There has been limited study, however, of parental activation on behalf of their children though the measure is licensed for commercial and research use by the developers. Psychometric assessments of the P-PAM across diverse populations, to our knowledge, have not yet been performed [7]. Thus, it is premature to assume that the P-PAM reflects the same theoretical construct among parents and could be used, in its current licensed form, in research and clinical care in the same manner as in adult patients. There is a particular need for information about activation among parents who have difficulty accessing and using the healthcare system, such as those with low-income, limited English proficiency (LEP), and/or limited health literacy [1], [9]. Failing to engage these patients and families may worsen healthcare disparities and reduce the potential of patient engagement to contribute to health system improvement for all populations. In this study, our aims were to (1) measure parent activation among English- and Spanish-speaking low-income parents in the pediatric primary care setting and (2) provide an initial assessment of the validity and reliability of the P-PAM in this study population.

Section snippets

Methods

We conducted a cross-sectional study at an urban, academic general pediatrics clinic in the US to examine parents’ healthcare activation on behalf of their children and assess the psychometrics of the Parent-Patient Activation Measure (P-PAM) in a diverse sample of low-income parents/legal guardians (hereafter referred to as “parents”). The Institutional Review Board at Johns Hopkins Medicine approved the study. All participants provided informed consent after the consent form was orally read

Results

We present analyses based on 316 completed parent surveys, 68% of which were completed in Spanish. More than 80% of approached parents agreed to screening and 92% of screening eligible parents agreed to participate and completed the survey (Fig. 1). Most refusals for screening or survey participation were due to perceived lack of time. Characteristics of the parent, family, and index child stratified by language of survey administration are presented in Table 1. Parents in the Spanish-language

Discussion

In this study of low-income parents with publicly insured children, we found that the P-PAM had high internal consistency and reliability in both English and Spanish. We also found that, for both languages, there was a different underlying factor structure than the PAM suggesting the two measures may not be assessing equivalent constructs among adult patients and parents. Parents whose preferred healthcare language was Spanish had lower activation than parents whose preferred healthcare

Acknowledgements

This work was supported by an Academic Pediatric Association/MCHB Bright Futures Young Investigator Award, the Johns Hopkins Primary Care Consortium, the DC-Baltimore Research Center on Child Health Disparities P20 MD000198 from the National Institute on Minority Health and Health Disparities (TLC) and Centro SOL: Johns Hopkins Center for Salud/(Health) and Opportunity for Latinos (LRD, SP, TLC). The content is solely the responsibility of the authors and does not necessarily represent the

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