Six focus groups were conducted between November and December 2019 (N = 46) with the number of participants ranging from 4–10. The majority of participants were female (89%), aged 45–54 years (37%), non-Latinx (87%), and Caucasian (84%), and had worked in the SCD clinic an average of 7.5 years. Participants included nurses, medical providers (physicians, nurse practitioners, and physician assistants), psychosocial providers (psychologists and social workers), pediatric hematology research staff, and clinic support staff (Table 2).
Table 2
Sociodemographic Characteristics of Focus Group Participants (N = 46).
Gender, N (%)
Female
Male
|
41 (89.1)
5 (10.9)
|
Age, years, N (%)
18–24
25–34
35–44
45–54
55–64
65–74
|
2 (4.3)
7 (15.2)
12 (26.1)
17 (37.0)
4 (8.7)
4 (8.7)
|
Race, N (%)
Asian
Black or African American
Caucasian or White
Other
|
1 (2.2)
5 (11.1)
38 (84.4)
2 (4.4)
|
Ethnicity, N (%)
Hispanic, Latino/a/x, or Spanish
Not Hispanic, Latino/a/x, or Spanish
|
6 (13.0)
40 (87.0)
|
Clinic Role, N (%)
Nurse
Psychosocial provider
Medical Provider
Front desk or support staff
Site research staff
|
10 (21.7)
11 (23.9)
14 (30.4)
6 (13.0)
5 (10.9)
|
Years worked in clinic, median (range)
|
7.5 years (1 month-30 years)
|
Through our analysis, we found four overarching themes: (1) families of children with SCD experience numerous unmet basic needs; (2) clinic staff believed they had a role to play in addressing unmet basic needs of patients and their families; (3) staff felt their ability to address families’ unmet basic needs depended upon caregivers’ capacity to act on staff’s recommendations; and (4) clinic staff’s ability to address unmet basic needs was limited by organizational and systemic factors beyond their control. While each quotation below presents the viewpoint of individual participants, we carefully selected quotations reflecting perspectives shared consistently across all four sites.
Families of children with SCD experience numerous unmet basic needs
Staff agreed that unmet basic needs were pervasive among their patients with SCD, relative to other patient populations seen within their hospitals.
Psychosocial provider: “I'll just put it out there, the need in this particular population is great, in general, by ratio… I think there's a good number of those that would have issues with insecurities around the issues [food, housing, etc.] that you're talking about.”
Due to frequent visits, needs were often reported to staff without prompting. Staff cited an array of common needs experienced by patients and their families, including limited access to warm clothing, housing and nutritious food.
Nurse: “Usually you can tell [food insecurity] by the kid too. We have kids coming in and we give them a juice box and it's like they haven't drank for three days so...it's kind of a little red flag.”
Clinic staff expressed that, though unmet basic needs were common in their communities, the impact of unmet basic needs on patients with SCD is particularly severe given their medical complexity. Staff across all clinics considered utility protection letters to be critically important, as experiencing cold temperatures due to heat shut-off can trigger vaso-occlusive pain.
Psychosocial provider: “We do a lot of those...utility shutoff protection letters. I get asked almost daily for one of those from one of our patients. They have bills that are probably in the thousands.”
Additionally, transportation difficulties impacted SCD patients and their families, as inability to travel between home and clinic limited their access to care and increased barriers to obtaining medication to manage their SCD.
Medical provider
“ [A] lot of our younger children…are on hydroxyurea. It's a medication to treat sickle cell... There's not a lot of pharmacies that compound it. I have one family that's driving up from [city] every month to [city], driving and parking here to pick up a prescription.”
Clinic staff believed they had a role to play in addressing unmet basic needs of patients and their families
Though clinics’ practices for addressing unmet basic needs were not uniform, all clinics employed at least one part-time social worker and acknowledged the link between medical and basic needs for children with SCD. Staff believed they had fostered trust and rapport with families, enabling families to feel comfortable disclosing their needs.
Medical provider: “I know that when I started in my position... the one thing that I demanded was a social worker..., [as] I knew that I wasn't going to be able to improve the health and wellbeing of these kids if I didn't have my own social worker.”
Psychosocial provider
“ We meet [with patients] at every appointment. And they might be fine for a couple years, and then they might have a psychosocial need. But then we've established rapport with them, we know their story.”
Despite underscoring the importance of addressing unmet basic needs within SCD clinics, staff also noted that attempting to address these needs within complex medical visits cannot rest solely on social workers. Staff felt limited in their abilities to proactively address patients’ needs, given that demand for assistance far outpaced the capacity they had in their roles.
Psychosocial provider
“ [T]he medical issue is obviously the priority, that's why they are here, but you can't ignore all the other aspects of their life which inevitably impact their medical situation. They come once every six months and then we may have identified six social issues or one social issue. And the ability to sort of help carry that through and solve those problems with them—I think it's super challenging for social work and that's where I think the burden falls.”
Staff felt their ability to address families’ unmet basic needs depended upon caregivers’ capacity to act on staff’s recommendations
Clinic staff described their perceptions of how caregivers understand the role of SCD clinics in addressing unmet basic needs. Through frequent visits required to manage children with SCD and the strong rapport clinic staff felt they had developed with families during these interactions, staff believed that caregivers perceived the pediatric hematology clinic as an accessible support system to address their unmet basic needs. Some providers suggested caregivers had come to expect help with non-clinical needs.
Medical provider: “I think it's sort of sometimes very hard to judge whether it's a need or it has become a habit. I think some families, it may not be a need because, I don't want to put every sickle cell family in the same category that it's a need, but I think it becomes a habit.”
Staff suggested that when they offered information about external resources, they were uncertain if caregivers had the time or knowledge necessary to connect to resources outside of the hospital.
Psychosocial provider
“ And I think the other issue is they [the families] haven't accessed those things because they don't know how to do it or they don't know what to do. And then you give them [phone] numbers, and I'm not saying everybody, but oftentimes there's a breakdown that you give them numbers and then the follow through is just lacking.”
Staff described the difficulty of balancing their desire to help families address unmet basic needs while supporting caregivers’ capacity-building. Staff felt compelled to help with resources on behalf of families, which oftentimes required substantial investment of time. Clinic staff voiced concern that their actions may diminish caregivers’ roles in self-advocating and problem-solving.
Psychosocial provider
“ So you know, sometimes we can have this culture of giving, which is wonderful. But also it can sometimes not be helpful for the families in terms of helping them sort of problem-solve on their own or seek resources. It's a fine balance between that.”
Clinic staff’s ability to address unmet basic needs was limited by organizational and systemic factors beyond their control
Staff expressed frustration about the unequal distribution of resources across subspecialty clinics within their organizations. Clinics were jointly housed with oncology clinics, and staff noted a contrast between the resource-rich pediatric oncology services and the limited resources available for their patients with SCD.
Psychosocial provider: “I wish that there were just more sickle cell resources...it's frustrating...especially when you share a section with oncology [that] is so rich in resources everywhere you look. And then sickle cell there's nothing and that's not an exaggeration…that's hard.”
In addition, staff described how organizational structures and hospital restrictions limited the resources they were able to provide patients to address basic needs.
Psychosocial provider: “I wish I could give out gift cards for grocery stores and gasoline. Our hospital has more recently had this strict aversion based on corporate compliance and we can't give out gift cards.”
Our findings also considered the broader political, legal, and health systems in which each clinic operates. Staff noted barriers they encountered when navigating a complex healthcare system in a challenging political climate.
Psychosocial provider: “We are the catchment area for [city]. We take everybody, which is wonderful..., but trying to help them navigate the healthcare system can be very complex. Especially if they're immigrants and English is a second language. There's a lot of education involved [in] trying to connect them with resources.”
Some providers expressed that though they had a role to play in addressing unmet basic needs, they questioned their ability to intervene on issues between patients and systems outside the hospital’s domain such as health insurance, public housing, or patients’ immigration status.
Medical provider: “[We] can direct them to resources available, [but]...can we really fix this as a medical community? This is really more a government policy issue and what we can do is direct them to resources. Give them addresses of food pantries, give them addresses or give them resources of how to contact the housing department to put them on the list for assisted housing. But I think this is...more a broader government and policy issue.”