Parent Perspectives on Care Received at Patient-Centered Medical Homes for Their Children with Special Health Care Needs. A. Provider Characteristics that Matter to Parents

01/01/2014

When asked to describe the health care they received from their child's primary care provider and what they liked and valued most about that care, parents often described personal qualities of the provider. Responses related to provider characteristics generally fell into three categories: (1) dedication to knowing and caring for the child and family; (2) expertise related to the child's special need; and (3) respect for parent knowledge and participation in shared decision-making.

Parents receiving care at PCMHs valued that their primary care provider knew and cared about their child and family.

Several respondents placed a high priority on the feeling of being known and cared for by the provider and by the office as a whole (see more detail on this below). One parent stated, "I just really get the feeling that [the physician] cares about [my child]." Another felt that her daughter's physician "makes you feel like you're her only patient. I think that's what I like about it … she doesn't just treat you as a number." One respondent liked that her child's physician seemed to "know" her family, and felt that this was an important part of care: "I feel like [the physician] knows us. It's not like I have to walk in and reintroduce myself every time I'm there … it really has a lot to do with just feeling known. I never feel like a stranger in there. I really feel like my children matter and that they're important to the doctor."

"I feel like [the physician] knows us. It's not like I have to walk in and reintroduce myself every time I'm there … it really has a lot to do with just feeling known. I never feel like a stranger in there. I really feel like my children matter and that they're important to the doctor."

Notably, a few parents felt that this was not an easy characteristic to find in a physician. One reported that "We've been to doctors who don't seem to even enjoy children, [but our current primary care provider] enjoys children and he relates to them very well." One parent said that she had seen nine "horrific" pediatricians before finding her child's current provider, and each of them had made her feel that "we were just a number to them just to get their checks."

Several respondents felt it was critical for a primary care provider to take her time during office visits to avoid making them feel rushed. This helped the parent feel that the physician cared about them and their needs. One parent reported that "[being rushed] makes me feel very unimportant, or like it doesn't matter, or like it's just another … visit to them." Not bring rushed also gave parents the opportunity to talk at length about the child's health care needs and to ask any appropriate questions: "They need to make you comfortable and make you feel wanted and not rushed in like cattle through a stockyard … [like] 'we're here to see you, ok, done.' They need to talk to you." One respondent talked specifically about how her child didn't react well to providers who tried to rush through appointments. Of her current physician, she said, "He just takes his time with [my child], and I love that."

"Basically it is just … not looking at her as her syndrome …. They see her as an individual who will achieve whatever she will achieve. She's not labeled by her syndrome. That's important to me, and they do a very good job with that."

Several parents felt that it was important for their child's physician to be "good with kids," and to view and treat their children as valued individuals. One parent said she wanted her child's physician to speak directly to her child rather than only to her and appreciated his good "bedside manner with kids." Two parents of children with more severe disabilities and developmental delays felt that the physician's ability to connect with their children was a particularly critical aspect of their children's care because it demonstrated the physician's ability to see that the child was a whole person rather than a set of complex issues. For example, one parent felt that it was very important for primary care providers to "take a personal" view of her child, "not looking at her as her syndrome." She appreciated the way that her child's physician saw her daughter "as an individual who will achieve whatever she will achieve. She's not labeled by her syndrome. That's important to me and they do a very good job with that." Another parent talked about her struggle to find doctors who had this trait: "Yes, [my daughter is] non-verbal, but she still understands what people are saying to her … Sometimes doctors … kind of act like she's not there." She felt that her current physician was able to relate to her daughter well, and "treats her as an individual."

"I got that he was going to do whatever it took to help us figure out [the child's diagnosis] … I felt he was really dedicated …. I really feel like he went above and beyond."

A few respondents also emphasized that they wanted a doctor who was dedicated to their child's care. These parents discussed the difficulty of having a child with special needs and felt that they needed a provider who could serve as an ally in the difficult process of securing appropriate care and resources for their children. One noted, "Having a handicapped child, you have to fight for everything. And it just makes it hard, especially when you don't have that rapport with a doctor that is willing to listen to you and willing to help you in a situation when you need that help. You don't need to be fighting with the provider that's supposed to be there to help you. You need that support from them … you need someone on your side." Another parent, while reflecting on why she chose her provider, said that "I got that he was going to do whatever it took to help us figure out [the child's diagnosis] … I felt he was really dedicated …. I really feel like he went above and beyond."

Parents saw provider expertise and a willingness to learn about children's special needs as an important element of care at PCMHs.

Several parents felt that provider expertise on their child's specific health care needs was a crucial element of care. This expertise had two components: medical knowledge about the child's specific condition and an understanding of the "level of response [that] needs to happen" when the child becomes acutely ill. Despite the importance they placed on this factor, several parents reported difficulties in locating physicians with the necessary expertise. "We run into the fact that not a lot of physicians, even in our specialty group, have knowledge of [my daughter's condition]," noted one parent. Another said, "The key with special needs is that the doctors need to have a very good understanding of that. I believe that most doctors do not have an understanding [of the needs of CSHCN] … [Before we found our current physician], we saw so many different doctors who knew nothing about special needs, so they were of absolutely no value to us because they couldn't point us in the right direction." For these parents, this type of expertise was one of the most important physician traits: "That's the biggest key, finding someone who knows about your child."

Although parents understood that primary care providers may not have learned about their child's specific condition as part of their medical school education, several shared a belief that "if you're going to take on patients who have rare concerns, … you probably should educate yourself in some more detail" about the child's special need. These parents highly valued their physician's willingness to put in extra effort to gain expertise about a specific condition and felt that it was a cornerstone of the physician's ability to provide high-quality care. One parent noted that her child's primary care provider "admitted he'd never heard of [the child's special need], but I could tell with each visit he had read more on it; … he gave excellent care since the very early days because of his willingness to research what is available." Another stated that "It's extremely important for us for the primary care physician to be abreast of things even if not at a granular specialty level, but at a general level, and he has taken the time on his own to become familiar with [our daughter's] condition."

Knowledge of the medical condition was important, but the provider's ability to leverage this knowledge to respond appropriately to potential medical emergencies was crucial. A few parents reported that their children sometimes grew very ill very quickly, noting that the child "has a tendency to go from zero to ICU in a matter of hours" or that when the child became sick, "it's more of a life-threatening [situation]." Given this tendency, these parents felt that it was crucial for physicians to understand the urgency and intensity of their child's health care needs and to be able to quickly distinguish between situations when a child could be cared for by the primary care provider and when he or she needed to be sent for emergency specialty care.

Parents appreciated that providers respected their knowledge and opinions and engaged them in shared decision-making.

Several parents valued having a provider who respected the knowledge and insight they themselves brought to the table. This knowledge can be divided into two categories: parental knowledge of the child's special health care need gained through independent research and insight gained by caring for the child around the clock. Further, several parents appreciated provider efforts to fully involve them in decisions about their child's health care.

"It's really important how well [the primary care provider] listens to what we're bringing to her."

Respondents who had acquired substantial knowledge about their child's condition placed great value on their primary care provider's willingness to take their knowledge seriously and incorporate it into decision-making. A few parents had devoted a significant amount of time to learning more about their child's special need through independent reading or research or by consulting other parents of children with the same medical condition. One parent of a child with a very rare disease noted that "I'm not going to say [my wife and I] are more expert [on our child's special need] than doctors. But we've educated ourselves in ways beyond what the typical pediatrician would know. We are privy to details, and we've seen his history and all those things. I don't think we know more about the medical side … but it's really important how well [the primary care provider] listens to what we're bringing to her." Three parents emphasized that they wanted their provider to listen to their observations about their child's behavior and current health and incorporate their insights into the plan of care. One respondent highly valued the primary care provider's "willingness to listen to us [when we say], 'Here's what we're seeing, here's what we're observing [with our child].'"

Although all nine parents confirmed that their provider found ways to involve them in decisions about their child's care, several valued this characteristic particularly highly. These parents discussed specific ways in which their child's physician involved them in decisions by presenting them with multiple options and asking questions about their treatment preferences. When one parent had to make a decision about whether to admit her child to the hospital for care, she appreciated that her physician gave her detailed information about her options and fully involved her in the conversation about the best course of action for her child. She noted that the doctor "presented it as, 'Here's what my recommendation would be. I know someone at Children's Hospital. I can contact them and get some information from them about what they might do. If you're uncomfortable about it, then we can talk about it some more, and make a decision.' And that's exactly what he did; … he emailed [his contact and] in a few days I was back in the office and we were talking about it again with more information." Another parent liked that his child's primary care provider always gave them a range of options: "[It's important] to work with us to adapt the appropriate plan of care for her … [The physician] and his nurses have been great about saying, 'Here are your three options, … here's what I would do, I think you should do X, but you could Y and Z, it's your call.' … They're just very good at letting us be a part of the decision-making process, which is very important to us …. There's a high level of involvement and we're very satisfied with it." These parents felt that they were consulted by their child's physician and made to feel as if they were part of their child's care team.

"They're just very good at letting us be a part of the decision-making process, which is very important to us."

Though most respondents indicated that they felt involved in a team decision-making process, they had differing feelings about whether parents or doctors should behave as team leaders. One parent felt that "we know our children better than any doctor ever will" and liked that her physician trusted her to make decisions about her child's health care. Another liked it when a provider was "willing to do what I wanted with no questions asked." However, two other parents wanted more of an equal decision-making partnership. One liked that her child's primary care provider will "address my concerns but he puts his wisdom into it. That's what I really like. I don't want to tell him what to do because I don't have that experience, I don't have that background or that training, but I don't want him to ignore [my input]. I feel like he does a very good job balancing that."

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