Results
All families were African American. As shown in Table 1, the majority of families were living at or near poverty as indicated by the percent (82%) that received health care coverage via Medicaid. One fifth of families who participated had three or more children under the age of five years living in the home.
Consented vs. Non-consented Families
There was no significant difference in sickle cell phenotype between those who participated in PAT and those who chose not to participate, (Hb SS, 50% vs. 58%; Mann-Whitney U, p > .2). There was also no significant difference in the insurance coverage between those who participated in PAT and those who did not, (Medicaid, 77% vs. 71%; Mann-Whitney U, p > .9). Similar distribution of SCD phenotype and economic status (as measured by insurance provider) indicate that non-participants did not vary significantly from families who participated.
Parents of Younger Children Were More Likely to Schedule a Home Visit
All children who met inclusion criteria were approached (N = 91). Over a period of 26 months, 56 families with a total of 58 children (64% of those eligible) consented to participate. Of those 58 children, a visit was scheduled for 39 (70%). Table 2 indicates that significantly more families consented if children were 2–7 months of age than if children were 8–36 months of age (77% vs., 62%, respectively, Fisher's exact test p < 0.05). For those who consented, significantly more visits were scheduled if the child was seven months of age or younger than if the child was more than seven months of age, (87% vs. 58%, respectively; Fisher's exact test p < 0.001).
Thirty-nine families participated in at least one home visit. Sixteen families (41%) had between 1–5 visits, thirteen (33%) had between 6–12 and ten (26%) families had over 13 visits to the home. Over this time, nine children aged out of the program, three parents scheduled in person but never answered the phone to confirm, and two have been lost to follow up because they moved. Of those that completed a visit, at least 50% depended on other forms of state or government assistance such as a supplemental nutrition program, food stamps or Social Security Income. For families that were lost, the cause was most often that the phone number had changed and the family could not be contacted. A social worker was contacted to help locate families for medical care. Over the past 26 months, 15–24 families actively participated each month.
The age of children of families that did not consent was obtained through retrospective analysis of the patients' appointment records. When the program was initiated, families of older children were called because clinic visits are less frequent.
Evaluation of PAT program Participating families were asked to complete a satisfaction survey of the home visitation program after participating in the program for at least four visits. The parent educator assured them that evaluations were anonymous and they could mail them in or give them to the nurse practitioner in the clinic. In one circumstance, the parent struggled with low literacy and the parent educator offered to read the statements aloud and write in answers for them. Caregivers were asked to check the box that describes how they feel on a Likert scale of one to five ranging from strongly agree to strongly disagree. Of the 23 families who completed more than four visits, 13 evaluated the program. All reported that they agree or strongly agree that they like PAT visits and that they strongly agree that PAT visits helped the caregiver understand development and engage with their child. There were two open-ended questions asking what aspect of PAT they liked best and if they could make changes, what would they be. No one recommended changes.
Qualitative Answers to Evaluation
One parent of a 20 month old stated in her evaluation "I read to her because you kept telling me to. And you know, she brings me books. She likes it". When this child was 8 months old the mom was initially hesitant to read to her infant because she did not like to read and she did not believe that her daughter would enjoy it. Another parent stated, "I like having the visits. She (parent educator) gives me ideas how to play with my child". One mom of a 10 month old said "I feel better now that I understand more about SCD. I'm not as scared anymore".
Recruitment and Program Retention
Recruitment was continuous throughout the study period; therefore the number of visits per family is not reflective of the number of families that are currently active in the program. For the 36% of families that elected not to participate in this free program, most stated that they did not feel that they had time, did not have consistent housing, or did not feel that they needed the services. During the study period, nine children aged out of the program (> 36 months of age) and could no longer receive visits. Additionally, four families requested to stop services, and three were lost to follow up.
The most common barrier was maintaining contact with families. When the family could not be reached to confirm, visits were not completed. Visits were rescheduled often; the most common reasons were that the child was hospitalized or a change in the caregivers' schedule. During the first six months of the program, only about 50% of scheduled visits were completed. Initially, all calls were made from an office phone affiliated with the hospital or university. Beginning in the seventh month of the program, we incorporated a dedicated cell phone to contact families. In the one-month period prior to acquiring the cell phone, 9 of 18 scheduled visits were completed (50%). That rate was representative of the number of scheduled visits completed when using the university-based landline. A cell phone was obtained under the name "Sickle Cell" with texting capabilities in August 2011. Rate of adherence to scheduled sessions increased from 50% to 79% after inclusion of the cell phone to contact families prior to the home visits (Figure 1). Adherence remained at 77.3% for the remainder of the study (months 8–24).
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Figure 1.
Percentage of scheduled home visits completed.
A cell phone was obtained under the name "Sickle Cell" with texting capabilities in August 2011. Rate of adherence to scheduled sessions increased from 50% to 79% after inclusion of the cell phone to contact families prior to the home visits. Adherence remained at 77.3% for the remainder of the study (months 8–24).
Home Visits
Qualitative observance of parenting practices revealed at least three common needs across many of the families, including lack of appropriate toys, failure to read/talk to the child, and inability to deal with challenging child behaviors during mealtime and bedtime. During home visits, strategies were discussed with caregivers about how they could engage with their child using pictures, books, or common items around the home. Table 3 lists some of the outcomes observed from these discussions. Examples of ways to play with items around the home, such as coffee cans, juice bottles or paper plates were demonstrated. Parents also had opportunities at each visit to discuss concerns they might have and referrals were made to community resources to address any urgent needs the family may have such as food, birth control, health care, lead testing, and employment. These discussions helped build rapport and trust between the provider and the family.
Home Visits and Relation to Sickle Cell Education
The parent educator was trained and educated on the genetic inheritance of SCD, morbidities associated with the disease and their impact on child development. The parent educator had the hospital version of the parent education program available with her at all times to review if families expressed need. The parent educator was able to reinforce training provided during visits to the sickle cell clinic such as how to palpate for an enlarged spleen, what temperature to monitor for and how to identify dactylitis. Several caregivers had questions regarding medications such as penicillin and folic acid and what they were for. Parents were directed to call the SCD clinic with any medical questions or concerns.