Parent activation and pediatric primary care outcomes for vulnerable children: A mixed methods study

Abstract

Objective:

Among children in low-income families 1) examine associations between parent activation and pediatric primary care outcomes and 2) explore parent perspectives on Parent-Patient Activation Measure (P-PAM) questions in relation to pediatric primary care experiences.

Methods:

We examined associations between P-PAM score via Spanish- or English-language survey and healthcare outcomes abstracted from electronic medical records for parent/child dyads at an urban general pediatrics clinic. Parent perspectives were elicited via qualitative interviews with a subsample of parents who “thought aloud” during P-PAM completion.

Results:

Among 316 Spanish (68%) and English-language parent/child dyads, we found associations between parent activation and primary care outcomes only among Spanish-language dyads and only for weight and health status. Findings from 21 interviews provided possible explanations for quantitative findings including question limitations in assessing knowledge, skills, and confidence in pediatric primary care and P-PAM cultural and linguistic appropriateness for low-income Latino populations.

Conclusions:

Pairing quantitative and qualitative methods provided insight on P-PAM measurement limitations and raised questions about its use in patient engagement interventions to reduce health disparities.

Practice implications:

Practices serving vulnerable children and families should consider the limitations of the P-PAM for measuring parent healthcare engagement before utilizing the P-PAM in patient engagement interventions.

1. Introduction

Low-income children are at high risk for health conditions that negatively impact their lifelong health including trauma, obesity, asthma, and delayed identification of developmental/behavioral disorders [1–4]. Lifecourse health promotion through illness prevention, early detection, and addressing the social determinants of health are foundational principles of pediatric primary care. [5,6]. The success of pediatric primary care at supporting low-income families in promoting and managing their children’s health, may depend in part on family healthcare engagement [7]. Individual-level patient engagement has been characterized as patient activation – a patient’s or caregiver’s confidence, knowledge, skills, and willingness to manage their health and healthcare [8,9]. Higher activation scores, as measured by the Patient Activation Measure (PAM), have been shown to be associated with improved health and healthcare outcomes and decreased healthcare costs across varied health conditions and among low-income, vulnerable adult populations [8–13]. Interventions focused on increasing activation among adults at risk of health disparities have demonstrated efficacy in increasing activation with subsequent improvement in adult health and healthcare outcomes [8,14]. Based on these findings there is a particular interest in targeting parent activation as a mechanism to reduce healthcare disparities for children, but there is limited research to date in this area.

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]. Additionally, the generally higher P-PAM scores compared to PAM scores and differing patterns of association with family sociodemographics and health/healthcare outcomes have raised further questions about the P-PAM’s application in child health research [16–18]. Critical next steps in understanding the implications of previously described differences between the PAM and P-PAM include more data on associations between P-PAM scores and pediatric healthcare outcomes and parent perspectives on P-PAM questions in relation to healthcare experiences. It is of particular importance to focus on populations at risk of health disparities in this exploratory research on the P-PAM. Different responses to patient engagement measurement or interventions among vulnerable populations may worsen healthcare disparities, particularly given the current focus on healthcare engagement as a key means of healthcare improvement. Among children, those most at risk of health and healthcare disparities include low-income, publicly-insured children. Nearly 40% of children have public health insurance coverage, and the majority of parents of these children speak either English or Spanish [19,20]. Accordingly, the purpose of this mixed methods study was to inform use of the P-PAM among parents of low-income, publicly-insured children by addressing the following two aims: 1) Determine the associations between P-PAM score and pediatric primary care outcomes among children of Spanish- and English-speaking parents and 2) Utilize cognitive interviewing techniques to elucidate parents’ thought processes while responding to P-PAM questions to explore parent perspectives on Parent-Patient Activation Measure (P-PAM) questions in relation to their pediatric primary care experiences.

2. Methods

2.1. Study setting and design

We conducted a mixed methods study utilizing the following data sources: cross sectional data from a previously reported survey of parents including the P-PAM and electronic medical record (EMR) abstraction, and qualitative interviews with a diverse sample of low-income parents/legal guardians (referred to as “parents”) [15]. The Institutional Review Board at Johns Hopkins Medicine approved this study. All participants provided informed consent after the Spanish or English language consent form was read to them and understanding affirmed.

The primary survey measure, the P-PAM, was designed to evaluate parents’ knowledge, skills and confidence in managing their child’s health and healthcare. The P-PAM is licensed by Insignia Health and was used with their permission [21]. Study inclusion criteria were: child ages 6 months-5 years with public health insurance who had been a patient at the urban general pediatrics clinic for at least 6 months, minimum parent respondent age of 18 years, and preferred healthcare language of English or Spanish. A convenience sample of participants was recruited and asked to consider only one of their children in the specified age range when responding to survey questions based on the child present for an appointment that day. Surveys included: information about the parent and family, information about the indexchild and their health status and the P-PAM. Additional information about survey content, administration, study recruitment and the P-PAM measure characteristics in this study sample are reported elsewhere [15].

2.2. Electronic medical record review

The following pediatric primary care outcomes were abstracted from the EMR for each index child for the 12 months (since birth for children <12 months) prior to survey completion via a standardized abstraction form: most recent weight and length, up-to-date (UTD) well visits, number of ED visits in the past year, UTD immunizations, receipt of flu shot, and lead screening. The American Academy of Pediatrics Bright Futures periodicity guidelines were used to determine age-specific criteria for number of well visits to be considered as up-to-date [22]. We assessed clinic utilization as sick or well care based on both billing codes and review of the note to verify a well care visit was completed. ED use was available for any location in the health system owing to a shared EMR. ED use was categorized as any vs. none in the past year. Children were designated as having UTD routine immunizations based on the age-specific schedule used in the clinic that is derived from the Centers for Disease Control and Prevention Recommended Immunizaton Schedule [23]. Children with UTD lead screening had EMR documentation of a lead level in the past year. This outcome included only children who would have had a well visit when this screening is typically obtained (12- or 24-month well visit).

2.3. Qualitative interviews

To select interview participants we stratified survey participants by education (some high school vs. less than a high school education), activation level as determined by P-PAM score (high (activation level = 3–4) vs. low (activation level = 1–2)), and survey language (English vs. Spanish). Within each of these strata, we phoned participants in order based on a random number sort and asked them to participate in an interview. A single bilingual (English/Spanish) interviewer of Honduran descent with significant prior community research experience completed interviews in the participant’s home or a private research space based on participant preference. Participants received $30 remuneration. Twenty-one interviews were completed between June and October 2015. There were no significant differences between interview participant characteristics and the remainder of the study sample. During the interview, parents were asked to “think aloud” while answering P-PAM questions to understand if participants’ interpretation of survey items matched what the survey question was intended to measure. Participants were also asked open-ended questions related to the topics covered in the P-PAM and their experiences using the healthcare system. The interview guide is included as a supplement. Digitally audio-recorded interviews were transcribed verbatim and Spanish language interviews were also translated into English using a commercial transcription and translation service.

2.4. Data analyses

All statistical analyses were conducted using STATA/SE Version 14 (StataCorp LP, College Station, TX). We compared sociodemographic characteristics, activation score, and pediatric primary care outcomes using chi-square statistics and student’s t-tests, assuming unequal variance. Qualitative data analysis was completed using Dedoose, an online qualitative and mixed-methods analytics program [24]. The study team reviewed interview transcripts to identify preliminary themes. The coding team (LRD, NS, DVA) developed a codebook based on these themes and used an iterative consensus process to determine clear definition of codes and consistent application by all coders. Coders were not aware of survey activation score or level during coding to address bias in identification and assessment of parent health/healthcare engagement behaviors in transcripts. During initial development and use of the codebook, all three coders coded five transcripts. The remaining transcripts had one primary coder and a secondary verification coder. Rather than utilizing a measure of intercoder reliability, we used established methods for addressing differences in coding due to multiple coders by addressing all coding discrepancies and reconciling them with discussion and consensus [25,26].

3. Results

We present analyses based on 316 completed parent surveys with review of corresponding child EMR data and 21 semi-structured parent interviews. Characteristics of the parent, family, and index child stratified by language of survey administration are presented in Table 1. As previously reported, mean P-PAM score and activation level were significantly lower among Spanish-language (SL) parents compared with English-language parents (EL) [15].

Table 1.

Characteristics of 316 parents and children. Data are presented as mean (SD) or n (%).

Characteristic	English† n = 102	Spanish† n = 214	p-value
Parent age (years)	27.8 (7.7)	29.4 (5.7)	0.065
Parent female gender	87 (86%)	204 (95%)	0.004
Parent race/ethnicity			<0.001
Non-Hispanic Black	41 (40%)	0 (0%)
Non-Hispanic White	15 (15%)	0 (0%)
Hispanic/ Latino	24 (24%)	210 (99%)
Other/ mixed race	22 (22%)	3 (1%)
Foreign-born parents	23 (23%)	211 (99%)	<0.001
Parent’s Years in the US	15.1 (6.2)	8.3 (4.0)	<0.003
Country of origin:			<0.001
Mexico	7 (32%)	78 (37%)
El Salvador, Honduras, Guatemala	4 (18%)	109 (52%)
Other Latin American countries	1 (5%)	22 (11%)
All other countries	10 (45%)	0 (0%)
Annual family income			<0.001
<$20,000	46 (45%)	101 (47%)
$20–30,000	18 (18%)	35 (16%)
>$30,000	24 (24%)	14 (7%)
Did not know/Refused	14 (14%)	64 (30%)
Number of children in household	2.0 (1.0)	2.0 (1.2)	0.421
Child age (months)	29.4 (18.8)	27.6 (17.2)	0.420
Child with chronic condition††	30 (29%)	48 (22%)	0.003
Parent education			<0.001
<High School	28 (27%)	157 (73%)
High school or GED	41 (40%)	44 (21%)
Some post-secondary	33 (32%)	13 (6%)
Parent English proficiency			<0.001
Very well	89 (87%)	4 (2%)
Well	12 (12%)	25 (12%)
Not well/Not at all	1 (1%)	184 (86%)
Parent health literacy (Newest Vital Sign)			<0.001
High likelihood of limited literacy (0–1)	29 (28%)	158 (74%)
Possible limited literacy (2–3)	34 (33%)	35 (16%)
Adequate literacy (4–6)	39 (38%)	20 (9%)
Parent Activation
Mean PPAM Score (SD)	79.1 (16.2)	70.7 (17.9)	<0.001
Median PPAM Score (range)	76.4 (53.2, 100)	65.5 (42.2, 100)	<0.001
PPAM Level
1	0 (0%)	6 (3%)	<0.001
2	2 (2%)	31 (14%)
3	37 (36%)	84 (39%)
4	63 (62%)	93 (43%)

^†Denotes language of survey completion, selected based on parental report of preferred healthcare language.

^††Obtained from EMR, includes: asthma, prematurity, developmental disorder or delay, congenital heart disease, Trisomy 21, chronic kidney disease, musculoskeletal or ocular disorders.

Pediatric primary care outcomes and their relation with activation by language group are presented in Table 2. Among the outcomes, none were associated with activation among EL parents. For SL parents, however, mean P-PAM score was higher if their child was overweight versus normal weight, while the mean P-PAM score was lower if their child had fair or poor health status versus more favorable health status. SL parents were more likely to report fair or poor child health status than EL parents. Children in the SL group were more likely to have UTD well visits, immunizations, and have received the flu vaccine in the past year.

Table 2.

Parent activation and prevalence of pediatric primary care outcomes by parent language.

	Parent Language
	English (n = 102)			Spanish (n = 214)
Characteristic	N (%)	Mean PPAM Score (SD)	p-value*	N (%)	Mean PPAM Score (SD)	p-value*
Well Visits up-to-date†
Yes	65 (64)	80.1 (16.3)	0.431	166 (78)	71.8 (18.5)	0.069
No	37 (36)	77.4 (16.1)		48 (22)	66.9 (15.4)
ED visit in the past year (EMR)
Yes	45 (44)	76.7 (15.8)	0.175	88 (41)	69.8 (18.0)	0.524
No	57 (56)	81.0 (16.4)		126 (59)	71.4 (18.0)
Immunizations up-to-date†
Yes	77 (76)	78.3 (16.1)	0.242	187 (87)	71.3 (18.1)	0.216
No	24 (24)	82.7 (16.0)		27 (13)	67.9 (16.3)
Received flu shot†
Yes	65 (64)	77.6 (16.2)	0.216	168 (79)	70.4 (17.8)	0.659
No	37 (36)	81.8 (16.2)		26 (22)	71.8 (18.7)
Screened for lead‡
Yes	50 (93)	79.8 (16.7)	0.641	107 (91)	71.0 (17.7)	0.288
No	4 (7)	75.2 (17.2)		10 (9)	66.6 (11.3)
Parent-reported child health status†
Fair or poor	18 (18)	74.8 (17.6)	0.258	77 (36)	66.3 (17.7)	0.007
Good or excellent	84 (82)	80.0 (15.9)		137 (64)	73.2 (17.7)
Weight Status
Overweight or Obese**	27 (26)	78.5 (16.5)	0.821	80 (37)	74.2 (18.2)	0.033
ot Overweight or Obese	75 (74)	79.3 (16.2)		134 (63)	68.7 (17.6)

^*Student’s t-test for differences in PPAM score by health outcome within the language group.

^†Indicates that the distribution of the health outcome differs significantly (p < 0.05) among children in EL vs. SL families.

^‡N = 54 EL group, N = 117 SL group.

^**Children with BMI (age ≥2 years) or weight for length (age <2 years) greater than the 85^th percentile were classified as overweight/obese.

We identified four overarching themes from our interviews with parents to explore their thought processes when responding to P-PAM questions: 1) The home/family unit is central to child health; 2) Healthcare system challenges can prevent or undermine activation; 3) Selecting a response can be difficult as parents weigh the tensions between having particular knowledge and skills and recognizing limitations; and 4) There are cultural and linguistic influences on P-PAM responses. These themes were evident across activation levels of participants.

Theme 1: Centrality of home/family unit to child health

The theme that home/family unit is central to child health was most evident during discussions regarding parent responses to P-PAM questions numbers 1 and 3: “I am the person responsible for my child’s health,” and “I am confident that I can prevent or reduce problems associated with my child’s health.” When parents were asked why they agreed with these statements, they commonly cited their duty as parents (Table 3, Quotes 1–3). Their elaborations on reasons for choosing their P-PAM responses to questions particularly focused on health-promoting behaviors in the home related to diet and nutrition (Quotes 4 and 5). When parents were asked about taking an active role in their child’s health, parent-directed health behaviors in the home remained common, as well as taking their child to well-child and acute care visits and maintaining UTD immunizations.

Table 3.

Parent Perspectives on the P-PAM: Themes 1 and 2^*.

Theme 1: Centrality of home/family unit to child health

Quote 1

Because you’re home with them. You’re with them all the time. You can’t expect a one-time visit to fix everything with the doctor. You’re the one that needs to care for them 24/7, so I feel like I am the big part of their health. -Activation Level 3

Quote 2

Porque nosotros somos los, nosotros somos los que tenemos que cuidar a los hijos, durante el día, al final del día, todo el día.  Because we are the ones who, we are the ones who have to care of our children during the day, at the end of the day, all day. -Activation Level 2

Quote 3

[…]yo trato de ser la mejor madre que puedo pues trato depues, ¿cómo se dice?De decirles lo que está bien, lo que no está bien, que se tienen que lavar sus manitas, todo eso acerca de la higiene y todo eso.  […] I try to be the best mother that I can so I try to, well, how do you say it? To tell them what’s good, what’s not good, that they have to wash their little hands, all of that regarding hygiene and everything.  -Activation Level 4

Quote 4

Porque ellos la pasan con uno las 24 horas del día, y uno, más que todo – bueno, hay cosas que uno no puede evitar, como la gripe o todo eso, pero enfermedades, porque cualquier enfermedad proviene de las comidas, la mala alimentación. Muchas enfermedades provienen de ahí , de la mala alimentación, que uno no come saludable. Entonces yo creo que ahí , yo pienso que ahí tiene mucho que ver. Si uno cuida lo que come uno se va a mantener saludable.  Because they’re with us 24 hours a day, and you mostly – well, there are some things that one can’t avoid, like the flu or whatnot. But as for diseases, because diseases can come from meals, bad nutrition. Many diseases come from that, a poor diet, when you don’t eat healthy. So I think that [diet], I think that has a lot to do with it. If you watch what you eat you will stay healthy. -Activation Level 2

Quote 5

Porque los padres siempre tienen más la responsabilidad de estar pendiente de lo que comen, elegir lo que les compras o no les compras en la casa. Porque depende de lo que tú les  – como padres, si yo les compro chucherías a los niños en la casa, van a comer puras cosas malas, si yo les compro cosas buenas pues van a poder elegir, entonces es mi responsabilidad.  Because the parents always have the main responsibility of being aware of what they eat, to choose what to buy them or not buy them at home. Because it depends on what you – as parents, if I buy the children junk food at home, they’re going to eat all bad things. If I buy them good things, well, they’re going to be able to choose. So, it’s my responsibility. -Activation Level 1

Theme 2: Healthcare system challenges can prevent or undermine activation

Quote 6

Le checo la temperatura y le doy Tylenol, que es lo que recomiendan, Tylenol o Motrin y le doy eso y ya si veo que no se le quita entonces ya decido llevarlo al doctor, pero si no yo lo mantengo en casa.  I check his temperature and I give him Tylenol, which is what they recommend, Tylenol or Motrin, and I give him that and if I see it’s not going away then I decide to go see a doctor, but if not I keep him at home. -Activation Level 2

Quote 7

Pues por lo mismo, una sabe cuando sus hijos se sienten bien, cuando yo puedo curarle la gripe o bajar la temperatura, entonces uno se lo hace en su casa. Cuando uno no puede, pues también es mejor acudir al doctor a que lo cheque, a que lo revise él y ya.  For the same reason, one knows when your children feel good, when I can cure a cold or lower their temperature, so you do it at home. When one can’t, it’s also better to go to the doctor to have it checked out, to have him check it out and that’s it.-  -Activation Level 4

Quote 8

Yeah. Most of the time I don’t bring him to the doctors because it’s the same thing over: a diaper rash, a fever. I have all the medicines for his symptoms. So I’m confident that I can take care of him rather than bringing him to the hospital unless he’s very ill like ear infections.- -Activation Level 4

Quote 9

I think I got better. I got better after each child. With the first, every little thing: emergency room … Because sometimes I think there’s something, you gotta give it time. Not every little prick, every little high temperature, you gotta run. Maybe you can control it at home, so I feel I strongly agree with that now. -Activation Level 3

Quote 10

[…] There’s no one else medically that I know that could help me, be like, “Okay, well, what else can I do?” There’s no one else besides calling them, and it’s not like you talk personally to the doctor. You get transferred to this person, transferred to that person, and you talk to the nurse. Then the nurse calls you back, so you never really talk to the doctor unless you really go in person and see them.  -Activation Level 3

Quote 11

Return phone calls in a more timely manner. The last time I called, I had called about – he had a really bad diaper rash, where you could see pink and skin was majorly coming off. And I called, and it took about four days for the clinic to call back. And by then I kinda got it under control, but I didn’t appreciate the four-day wait when the automated system says we’ll call you in 24 hours. So that could be done a lot better.- -Activation Level 3

Subtheme 1: Phone system challenges for Spanish-speakers

Quote 12

Uno puede llamar a las enfermeras, pero a veces es un poco difícil hablar con las enfermeras … Porque por la línea de teléfono que te contestan en inglés, luego te mandan a una línéa, luego te mandan a otra línéa, y luego hasta que ya te contesta la enfermera y te dice que tienes que esperar, si no hay una enferma en español no te atienden entonces.  One can call the nurses. But at times it’s a bit hard to speak with the nurses … Because they answer the telephone line in English. Then they send you to a line, then they send you to another line, and then until the nurse answers you and tells you that you have to wait. If there isn’t a nurse in Spanish then they don’t assist you. -Activation Level 1

Subtheme 2: Lack of prompt sick care availability

Quote 13

Porque muchas veces, como le digo, a veces los niños se resfrían y uno puede controlar eso en la casa, ya si como si los niños tienen demasiada fiebre entonces ya es como ahí llevarlos al hospital, pero hay veces que no es necesario porque siempre en las clínicas tienes que hacer cita y esperar 15 días, entonces tienes que llevarlo a emergencia, y en emergencia no te van a atender por una gripe…  Because many times, as I told you, at times the children catch a cold and one can control that at home. If the children have a high fever thenyou have to take them to the hospital. But there are times that it’s not necessary because in the clinics you always have to make an appointment and wait 15 days. So, you have to take them to the emergency room. And at the emergency room, they’re not going to treat you for a cold … -Activation Level 1

Quote 14

They take appointments, and they will see you for well child visits and immunizations, but I need a doctor for when my child is sick, most of all. And if I can’t take you to the doctor that I know, and the doctor that has the records, when my child is sick, it’s a little backwards. I’d rather take you to somebody that I don’t know for a shot, which is just a state standardized shot than taking them to somebody I don’t know for an actual health problem. It’s a little backwards.- -Activation Level 3

Subtheme 3: Difficulties with public health insurance

Quote 15

I did [miss appointments] because of the insurance being cut off. I did reschedule multiple times when I thought the thing was situated, and it never was. -Activation Level 3

^*Spanish language quotes indicate quote is from an interview conducted in Spanish.

Theme 2: Healthcare system challenges can prevent or undermine activation

The second major theme may explain the few associations between activation and pediatric primary care outcomes. Healthcare system challenges commonly were elicited by P-PAM question number 5: “I am confident that I can tell when I need to go get medical care and when I can handle my child’s health problem myself.” Many parents expressed confidence about their abilities to manage child illness at home and potentially avoid seeking medical care for acute illness, and they reported that this confidence increased with subsequent children (Quotes 6–9). However, acting on their engagement around childhood illness was fraught with challenges. Some parents reported phone advice from the clinic nurse as a facilitator to home management of illness, but the majority of parents who discussed phone advice did not view it favorably. Parents reported lack of trust in the nurse’s advice compared with that of a physician and concerns about delaying needed medical care if the nurse’s advice did not result in symptom resolution or a nurse call back was delayed (Quotes 10 and 11). Additionally, phone advice could not be accessed uniformly; Spanish-speaking parents often reported language barriers as compromising their ability to use the phone triage system (Quote 12). When parents felt their children’s illness merited in-person medical care or were advised to seek in-person care through the phone advice, they commonly reported that a lack of prompt sick care availability at the clinic resulted in ED or urgent care use (Quotes 13 and 14). Another system-level factor compromising healthcare engagement was maintenance of public health insurance. While no P-PAM question asks about health insurance, parents reported difficulties with public health insurance while elaborating on their reasons for responses to other questions. For example, some reported missing preventive care appointments and vaccine delays due to insurance gaps due to a cumbersome renewal process (Quote 15). SL parents also reported that limited availability of interpreters or bilingual staff in the social services sector made renewal challenging.

Theme 3: Difficulty selecting a response as parents weighed tensions between having particular knowledge and skills and recognizing limitations

The third P-PAM question, “I am confident I can help prevent or reduce problems associated with my child’s health,” was often problematic for generating a response that accurately represented parents’ confidence. Parents believed that they could have an effect in some domains, such as diet, but that not all things could be prevented. When faced with this tension, parents made different decisions about their degree of agreement (Table 4, Quotes 16 and 17). Question number 8, which probes understanding of the child’s health problems and what causes them, caused similar tension. Parents expressed they had some understanding, but did not know everything (Quote 18). Some parents expressed that the question appeared to ask two different things and they did not have the same answer for both domains of the question (Quote 19). Other questions, such as knowledge of available treatments and how to prevent problems, also elicited tension in response formulation due to parents’ honest appraisal that they did not or could not know everything about possible treatments or prevention strategies (Quote 20).

Table 4.

Parent Perspectives on the P-PAM: Themes 3 and 4^*.

Theme 3: Difficulty selecting a response as parents weighed tensions between having particular knowledge and skills and recognizing limitations

Quote 16

I: Sí, estoy segura de que puedo ayudar a prevenir o reducir los problemas asociados con la salud de mis hijos.  Yes, I am sure I can help prevent or reduce the problems associated to my children’s health.  R: Con la salud, pues sí, a veces si los puedo prevenir pero otras no.  Regarding their health, well yes, sometimes I can prevent them but others I can’t.  I: ¿Sí? ¿Cómo tú lo haces?  Yes? How do you do it?  R: Hay enfermedades que no se pueden prevenir pero hay enfermedades a veces que uno sí puede cuidarlos.  There are certain illnesses that can’t be prevented but there are other illnesses when one can take care of them.  I: So tú respuesta a esta pregunta es estás muy en desacuerdo, en desacuerdo, de acuerdo o muy de acuerdo?  So, your answer to that question is you disagree, strongly disagree, agree or strongly agree?  R: De acuerdo.  I agree.  -Activation Level 2

Quote 17

I: Okay. Te voy a hacer otra pregunta. Estoy segura que puedo ayudar a prevenir o reducir los problemas asociados con la salud de mis hijos.  Okay. I’m going to ask you another question. I’m sure I can help prevent or reduce the problems associated with my children’s health.  R: Pues yo pienso que en algunas sí.  Well, I think in some, yes.  I: ¿Y cuáles son?  And what are they?  R: Digo yo que en lo que es la alimentación, lo que es el cuido, creo yo, físicamente, pero hay enfermedades que uno no lo puede evitar como padre. I would say as far as food, caring for them, I think, physically, but there are diseases that one as a parent can’t avoid.  I: Sí. ¿Y cuál es tu respuesta para esa pregunta, estás de acuerdo, o muy de acuerdo?  Yes. And what is your answer to that question, do you agree, or strongly agree?  R: Yo digo que no estoy muy de acuerdo porque hay cosas que uno no puede evitar.  I would say I don’t quite agree with that because there are things that you can’t avoid.  -Activation Level 2

Quote 18

I: Okay, entiendo cuáles son los problemas de salud de mi hijo y qué los causa. ¿Estoy muy de acuerdo, en desacuerdo, de acuerdo o muy de acuerdo?  Okay, I understand what my son’s health problems are and what causes them. I strongly agree, disagree, agree or strongly disagree?  R: Ni muy de acuerdo ni muy en desacuerdo … a veces se enferman y no sé por qué se enfermaron y otras veces se enferman y sí sé por qué se enfermaron.  Neither strongly agree nor strongly disagree … sometimes they get sick and I don’t know why they get sick, and then other times when they get sick I know why they did.  -Activation Level 2

Quote 19

I: […] I understand my child’s health problems, and what causes them.  R: Agree to an extent. I understand their problems. I don’t know what causes them.  -Activation Level 3

Quote 20

I: Okay. I know what treatments are available for my child’s health.  R: I know most of the treatments, not all.  I: So what would you say your answer would be for that one?  R: Oh, agree – agree. So most of the time, not strongly.  I: Why do you agree and not strongly agree?  R: Because, well, for example, some illness or sickness that my children had, they never had before. It was new to me so I didn’t know what treatment to give them. But most of the time they sick I know what to give them and I deal with it … But sometimes I don’t know. -Activation Level 4

Theme 4: Cultural and linguistic influences on P-PAM responses

Quote 21

I: El participar activamente en el cuidado de salud de mis hijos es lo más importante que afecta a su salud.  Participating actively in the health care of my children is the most important thing that affects their health.  R: No entiendo lo que dice.  I don’t understand it.  I: Eso quiere decir que si tú actúas activamente en la salud de tus hijos eso es lo más importante en la salud de ellos.  It means that if you actively participate in the health of your children that is the most important thing for their health. R: Claro, es importante. Nada, esa pregunta está medio confundida.  Of course, it’s important. That question is rather confusing. -Activation Level 2

Subtheme 1: Estar pendiente

Quote 22

Yo siempre trato de hablar con los doctores de todos los síntomas que yo veo en mis hijos, de como ellos actúan. Yo no tenido problemas gracias a Dios con ellosporque ellos me hacen preguntas del bebé, de mis otros hijos. Por ejemplo, si yo tengo alguna duda, ellos siempre tratan de solucionarme y de estar pendientes de los niños.  I always try to talk with the doctors about all the symptoms I see in my children, and how they act. I haven’t had any problems with them, thank God, because they ask questions about the baby, and my other kids. For example, if I have any questions, they always try to find a solution and look out for my children. -Activation Level 4

Quote 23

Siempre que les llevo a consultas como el WIC, a las vacunas y a todos los controles, yo siempre estoy activa y pendiente de todo, preguntándolessi está bien el peso, si la estatura. Whenever I take then to appointments like WIC, for their vaccines, and everything that I control, I’m always active and aware of everything, asking if their weight is fine, if the height. -Activation Level 4

Quote 24

Porque yo tengo que estar al pendiente de ellos[los niños], que no se enfermen o por ejemplo lavarles las manos, que no se enfermen, abrigarlos bien en tiempo de frío.  Because I have to look out for them [my children], make sure they don’t get sick or, for example, wash their hands so they don’t get sick, that they are dressed warmly for the cold weather. -Activation Level 2

Subtheme 2: Respeto

Quote 25

No, siempre he tenido la confianza con ellos de, intento conocerlos y tener confianza con ellos, precisamente porque es el doctor de mis hijos.  No, I have always trusted them, I try to know them and have trust in them, precisely because he’s my children’s doctor. -Activation Level 1

Quote 26

Porque uno necesita saber y el doctor está para apoyarte, para decirte quá es lo que tienes que hacer, sí. Entonces el doctor está para apoyarte y para contestarte lo que necesites saber.  Because one needs to know and the doctor is there to support you, to tell you what it is that you have to do, yes. So, the doctor is there to support you and to answer what you need to know. -Activation Level 1

Quote 27

Porque a uno le digo que le da pena preguntar y uno está indeciso. ¿Le digo o no le digo? ¿será importante o no? Y sí ha habido ocasiones que uno dice, “no, mejor está bien, mejor así me voy”.  Because I tell you that it makes you feel bad to ask a question or one is indecisive. Do I tell him or do I not tell him? Is it important or not? And, yes, there have been times that one says, “No, it’s probably fine, I’ll leave it like that.” -Activation Level 1

Quote 28

Porque siempre que la llevo al médico, la doctora de mi niña habla español y siempre ella me respondió a todas las preguntas. A veces estoy poquito indecisa y ya le digo, “doctora, fíjese que la niña está así, no sé lo que necesito darle”, y ella me explica todo. Esa es mi seguridad.  Because whenever I take them to the doctor, my daughter’s doctor speaks Spanish and she always answers all my questions. Sometimes I am somewhat hesitant and I’ll say, “Doctor, I noticed my little girl is like this, I don’t know what to give her,” and she explains everything. That’s my safety.  -Activation Level 4

Subtheme 3: Contextual factors

Quote 29

A la grande yo la tengo en una clínica diferente que a la pequeña. A la pequeña la tengo en[la clínica] y a la grande en [otra clínica] y en ese aspecto yo siento la diferencia porque allá, donde llevo a la grande, se me hace un poco más dificil porque allá no hablan español y yo no hablo inglés y cuando yo necesito hacerle algunas preguntas al doctor siempre tengo que estar con el traductor. En ese aspecto es que yo he sentido la diferencia.  I have the oldest in a different clinic than the youngest one. I have the youngest in [study clinic] and the oldest in [another clinic], and in that respect I feel the difference because there, where I take my oldest, it’s a little hard for me because they don’t speak Spanish there and I don’t speak English. And whenever I need to ask the doctor some questions I always need a translator. In that respect that’s where I’ve felt the difference. -Activation Level 4

Quote 30

I: ¿Le pone a usted nerviosa o incómoda si tiene una pregunta, o compartir una preocupación sin que el médico se lo pida?  Do you get nervous or uncomfortable if you have a question or to share a worry if the doctor hasn’t asked it?  R: A veces sí.  At times yes.  I: ¿Y por qué?  And why?  R: Porque uno piensa que para todo le van a pedir a uno un social.  Because one thinks that for everything they’re going to ask for a Social.  I: ¿Y eso es afuera de la clínica de aquí , verdad?  And that is apart from the clinic here, right?  R: Sí. Entonces dice uno, no, mejor no pregunto porque si pregunto a veces uno por preguntar … te piden un ID.  Yes. So one says, no, it’s better not to ask because if I ask at times one by asking … they’ll ask for an ID.  -Activation Level 4

^*Spanish language quotes indicate quote is from an interview conducted in Spanish.

Theme 4: Cultural and linguistic influences on P-PAM responses

Among SL parents, P-PAM question 2: “taking an active role in my child’s healthcare is the most important thing that affects his/her health” resulted in identification of cultural and linguistic influences on responses. Taking an active role is an idiomatic expression for which the appropriate translation to Spanish is not clear. The language used for question 2 back translates most closely to “actively participating,” but SL participants often asked for clarification on what this meant (Quote 21). In responses to other questions, however, parents commonly used the phrase “estar pendiente,” to describe examples of “taking an active role.” Estar pendiente can be translated as “to attend to,” “manage” or “be on top of.” Parents emphasized the importance of being “pendiente” in positively affecting their child’s health and healthcare (Quotes 22–24).

Among SL participants, culture-bound approaches to healthcare interactions, particularly in the domain of respect for authority or “respeto,” were present. SL parents often described the trust they had in the authority of the physician, and for some SL parents the physician as an authority figure negatively impacted their willingness to ask questions (Quotes 25–28). Finally, SL respondents, unlike EL respondents, described that language barriers and fear of disclosing their immigration status influenced participation in healthcare interactions and question responses. These contextual factors appeared to wield more influence on healthcare interactions outside of the study clinic, as parents reported having significant trust in the study clinic (Quotes 29 and 30).

4. Discussion and conclusions

4.1. Discussion

This is the first study, to our knowledge, to present findings on the associations between the P-PAM and pediatric primary care outcomes and to provide parent perspectives on P-PAM questions in relation to their experiences with pediatric primary care. We found few associations between parent activation and pediatric primary care outcomes in this sample of low-income, generally healthy children. The qualitative portion of this mixed-methods study provided several possible explanations for the quantitative results including that the P-PAM may have limitations both in its question structure for assessing knowledge, skills, and confidence in general child health and healthcare and in its cultural and linguistic appropriateness for low-income Latino populations. Our findings suggest that further work is needed to understand how to best measure parent engagement in their child’s health and healthcare and how to use the P-PAM to understand and address health and healthcare disparities among vulnerable children and families.

We found no associations between activation and pediatric primary care outcomes in the EL group and a potentially paradoxical finding of increased activation among parents of children who were overweight in the SL group. This is in contrast to the PAM, which has consistently demonstrated positive associations with varied adult health and healthcare outcomes [8–13]. Our findings are consistent with a recent study in a demographically similar sample, which found, contrary to their hypothesis, higher ED utilization among children of more highly activated parents [16]. While our findings may be due in part to sample size and selection, the qualitative findings support a decreased likelihood of association with pediatric primary care outcomes. Overall, qualitative interviews reflected the multiple factors that contribute to pediatric primary care outcomes. Structural barriers, such as a complicated public health insurance enrollment/renewal processes and limited prompt illness advice and acute care access, may exert more influence on pediatric primary care outcomes than parents’ healthcare engagement. Based on parent interviews, differential success navigating system-level barriers was an important contributor to healthcare use patterns and ultimately the patients’ outcomes. Knowledge, skills, and confidence about managing system-level barriers, however, are not directly addressed in the P-PAM. One question asks parents to report their confidence to figure out solutions when new situations arise with their child’s health. Most interview participants interpreted this as related to health conditions, not problems navigating the healthcare system. A rewording of this question to include an explicit reference to healthcare navigation could potentially improve P-PAM specificity in identifying parents whose healthcare engagement includes knowledge, skills, and confidence in system navigation.

Our qualitative findings also suggest that lack of specificity in P-PAM questions may explain the limited association with pediatric primary care outcomes. Parents encountered difficulty with response selection because the P-PAM addresses their child’s health generally and some parents recognized that answering affirmatively would indicate a knowledge, confidence and skills that were unrealistic given the volume of potential child health conditions. This suggests that the P-PAM may be more useful as an intermediary intervention target for specific conditions or with children with chronic health conditions or medical complexity. Studies in child mental health have employed both the general P-PAM and a specific mental health P-PAM and have demonstrated findings more consistent with adult studies [27,28]. This suggests that employing the P-PAM in a more specific context may be a more appropriate application as parents may be more focused on knowledge, skills and confidence as it relates to a particular condition. Finally, during interviews parents often focused on behaviors related to child diet and physical activity when explaining their reasoning for selecting a P-PAM response. Use of the P-PAM in a general context to focus on child weight, diet and physical activity practices merits further exploration through research focused on childhood overweight and obesity [29].

We did find two pediatric primary care health outcomes that were associated with activation score among SL parents: child overweight and parent-reported child health status. The direction of these associations, lower activation associated with lower ratings of parent-reported child health status and higher activation associated with child overweight, suggest that the P-PAM may be measuring, at least in part, acculturation among SL parents and families. US-born Latino children of immigrant parents have been shown to have the highest prevalence of overweight among Latino children, in part due to the family adopting US obesogenic behaviors [30,31]. Families that adopt obesogenic behaviors as they integrate and assimilate into US communities likely also have had more exposure to the US healthcare system. Increased exposure to the US healthcare system via a child with a chronic medical condition has been associated with increased parent activation [16,17]. Less favorable health status reporting among Spanish-dominant immigrant Latinos, despite better objective measures of health than non-immigrants, has been posited to be related to traditional cultural beliefs among immigrant Latinos and linguistic challenges with self-reported health survey measures [32–35].

We did not employ a measure of acculturation in this study. Nor was there an association between length of time in the US, a common proxy measure for acculturation, and parent activation. Spanish-language parent interviews, however, demonstrated evidence of participants’ culture-bound approaches to healthcare encounters. Among immigrant Latino adults there has been a variable association between length of time in the US and activation [12,36]. A recent study employing an acculturation measure among a sample of low-income immigrant Latino parents found no relation with activation [18]. Some studies employing activation as an intervention target have specifically addressed the cultural orientation towards respect for authority, harmonious interactions and unfamiliarity with the US healthcare system as increasing activation among Latinos [28,37,38]. Addressing these factors may increase activation scores, but it is still uncertain whether this will improve health or healthcare outcomes [39–41]. A lack of precision to distinguish activation and acculturation could impact interventions that include Latinos and are focused on increasing parent activation to promote child health given that acculturation can be associated with less favorable health outcomes [42–44].

Our findings also highlight the challenges associated with translation and adaptation of measures into non-English languages. We employed translation best practices for the P-PAM including translation, back-translation and pilot testing, yet the qualitative interviews revealed limitations in the Spanish-language version that may or may not have impacted P-PAM scores among Spanish-speakers [45]. A standardized Spanish-language P-PAM is not currently available from the licensing company and it is unknown, therefore, how similar or different the Spanish language versions have been across studies. Limitations in translated versions of measures is not unique to the P-PAM. Measures may not have an available version in a non-English language for use across studies, limited information about the translation process may be reported in studies, and validation of non-English languages may not have been completed in comparable samples [46,47]. As the US population increases in diversity of languages and cultures, the potential impact of item response variation due to linguistic or cultural impact on question interpretation merits attention.

Our findings should be interpreted in the context of certain limitations. This study was performed in a single US pediatric primary care clinic designed to address the sociocultural needs of immigrant Latino families and which also has particular supports for low-income families. Within this context, common barriers to healthcare access and use for immigrant and low-income families are fewer than in other settings, particularly with respect to language barriers given most providers and staff are bilingual. This could impact activation and the distribution of pediatric primary care outcomes for the study population. Health system contextual factors can reduce barriers to activation, thus our findings may not be generalizable to settings that are not specifically oriented towards low income and immigrant populations [39]. Second, our sample includes parents attending a pediatric primary care clinic who were willing to participate in a survey, perhaps leading to selection bias. More than 80% of approached parents agreed to screening and 92% of screening-eligible parents agreed to participate and completed the survey. We did not collect demographic information on approached parents. Study sample demographics reflected the demographics of children seen at the clinic generally, but parents who present for primary care visits are likely different from those who do not. Finally, the sample size may have been inadequate to detect a difference by activation score for pediatric primary care outcomes given the favorable outcome profile and the relatively high P-PAM scores among parents compared to PAM scores in similar populations.

4.2. Conclusion

Research on patient engagement, specifically measured via the P-PAM, is nascent in child health. Emerging research trends indicate that there are particular limitations of the P-PAM, especially among low-income and racially/ethnically diverse populations. Children and their parents are more racially, ethnically, and culturally diverse than the US adult population, particularly older adults. Measurement limitations of the PAM in diverse populations may be magnified in the P-PAM raising questions about whether activation, as measured by the P-PAM, should be a focus of interventions to reduce child health and healthcare disparities.

4.3. Practice implications

Among generally healthy children, the self-efficacy and self-management skills for a particular illness that may be related to activation in adults may be less impactful in pediatric primary care settings due to increased influences of health system-level and other contextual barriers. Practices serving vulnerable children and families should consider the limitations of the P-PAM for measuring parent engagement in their child’s health and healthcare before utilizing the P-PAM in patient engagement interventions addressing health disparities.

No funding source had any role in the study design, in the collection, analysis and interpretation of data; the writing of the report; or in the decision to submit the article for publication.