Cross-cultural validation of the parent-patient activation measure in low income Spanish- and English-speaking parents
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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2022, Academic PediatricsCitation Excerpt :Parental activation concerning their child's health was assessed using the parent-PAM (P-PAM). The P-PAM is a standardized 13-item survey, adapted from the well-validated PAM developed by Hibbard et al.12 The P-PAM has high internal reliability among low-income Spanish with limited English proficiency parents (α = .92) and English-speaking parents (α = .90)26 and assesses parents’ knowledge, confidence, and willingness to act concerning their child's health. Items include: “When all is said and done, I am the person who is responsible for taking care of my child's health.”27
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2021, General Hospital PsychiatryCitation Excerpt :The 13-item questionnaire is predictive of preventive behaviors, health behaviors, and self-management behaviors [49]. Its validity and reliability have been tested in a variety of clinical settings and with population groups [50–52]. The PAM-13® acknowledges four activation levels from low (1) to high (4) which are linked to health-related behavior.
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2019, Patient Education and CounselingCitation Excerpt :The Parent Patient Activation Measure (P-PAM) was adapted from the PAM for use with parents in pediatric healthcare. We reported previously that the P-PAM had acceptable reliability, but that the underlying factor structure generated concerns about whether the P-PAM is measuring the same construct as the PAM [15]. Other studies have since raised similar concerns [16].
Parent activation in the pediatric emergency department: Theory vs. reality
2018, Patient Education and CounselingCitation Excerpt :Finally, it should be recalled that the theory of parent activation was originally derived from the theory of patient activation. Future research should examine the appropriateness of transposing the factors of beliefs, confidence, action, and perseverance from patient activation onto parent activation [27]. Our study had several limitations.