An analysis and integration of survey and focus group data revealed overall satisfaction of families and primary care clinicians (PCCs) of children with special health care needs to be generally high. However, when satisfaction with different aspects of care is compared, both families and PCCs reported being less satisfied in some areas than in others. These areas, information, family supports, and coordination of care (in particular, coordination of care regarding home health services, hospitalization and discharge planning, and school health services) were identified by both families and PCCs as areas that present opportunities for improvement.
This summary report includes key findings of the family needs assessment, followed by key findings of the primary care clinician needs assessment.
FAMILY NEEDS ASSESSMENT
Three hundred twenty-one family surveys were completed, and four family focus groups were held. Tables I-IV describe key survey findings. Table V is a summary of the family needs assessment and incorporates key findings of both the survey and focus groups.
The family survey measured overall parent satisfaction in five different areas of care. Table I describes the responses to the five overall satisfaction questions. Most respondents reported being satisfied in most areas in most areas measured. However, when comparing the responses to the overall satisfaction questions, we see that the provision of information and the availability of supports to help parents care for their children with special health care needs stand out as areas in which fewer parents reported themselves "very satisfied." This comparison, in conjunction with the knowledge that patient satisfaction surveys generally reflect a somewhat positive or favorable bias, suggests that the provision of information and availability of family supports are areas that may benefit from improvement.
Parents reported some types of information and supports to be more accessible than others. Tables II and III list parents' ratings of the accessibility of different types of information and supports.
Although overall satisfaction with primary care physicians' coordination of medical care was high (94%), respondents reported primary care physician involvement to be low in several critical areas of care coordination: discharge planning, home care, and school health services. These areas are highlighted in Table IV. These responses are in striking contrast to the responses in other areas measured regarding the primary care physician's role in care coordination. Other areas of care coordination measured revealed primary care physician involvement to be always/usually present for at least 87% of respondents.
One suggested explanation for parents' high level of overall satisfaction with primary care physicians' coordination of medical care, despite low primary care physician involvement in these areas, is that parents may not view communication and coordination with hospital discharge planning, home care, and schools as part of the role of their child's primary care physician and therefore do not attribute them as contributing to their satisfaction (or dissatisfaction) with the way in which the primary care physician coordinates their child's care.
In order to gain further insights regarding the problems of information, support, and care coordination, parents were asked to elaborate on these areas in focus groups. Highlights of the focus group discussions are described in Table V (on the following page), along with a summary of key findings from the parent survey.
Summary of Family Needs Assessment
Parents of children with special health care needs identified the availability and accessibility of information, family supports and care coordination, particularly coordination of care surrounding hospitalization, discharge planning, home care and school health services, as areas that could benefit from improvement. Focus group discussions confirmed these survey findings. They also provided anecdotal information from parents about concerns regarding uncovered or under-covered services. Areas in which parents felt there to be gaps in services included durable medical equipment; dental health services; mental health services; transportation; and interpreter services.
The problems of family supports and gaps in services are not unrelated to those of information and care coordination. Interventions that improve the dissemination of information to both families and primary care physicians may also address the problem of limited access to family supports and perceived gaps in services.
PRIMARY CARE CLINICIAN NEEDS ASSESSMENT
Surveys were received from 285 PCCs: 194 surveys were used for analysis. (91 PCCs were not eligible to complete the entire survey and were therefore excluded from analysis.) Two PCC focus groups were held. Table VI describes selected survey results. Table VII summarizes the PCC needs assessment by incorporating key findings of both the survey and focus groups.
Overall PCC satisfaction in three areas measured by the survey was high. Most respondents reported being satisfied in most of the specific areas measured. In general, respondents reported that "making a difference," and watching a patient progress, grow and develop were key factors contributing to their satisfaction. However, when probed, several areas emerged as areas in which there is room for improvement. Table VI includes a summary of these findings.
Primary Care Clinicians identified several areas of care that could benefit from improvement. The areas identified were those related to care coordination and information regarding the care of children with special health care needs. A summary of key findings of the PCC needs assessment, highlighting PCC concerns, is presented in Table VII.
Summary of PCC Needs Assessment
PCCs identified coordination of care of children with special health care needs, mostly related to the provision of home care services, hospital discharge planning, specialists, schools and parents, as an area in need of improvement. Coordination of care was described as particularly difficult for those children with multiple needs who are serviced by many agencies. PCCs also identified a lack of information--or difficulty in accessing information--regarding the care of children with special health care needs as a problem both for themselves and for parents. In addition, PCCs reported a concern that time limitations prevent them from meeting all of the needs of the child and family. Interventions that improve the dissemination of information and strategies to improve care coordination may, in fact, reduce this problem of time limitations.
|TABLE 1. Survey Findings on Overall Parent Satisfaction|
|Satisfaction with...||Very Satisfied||Somewhat Satisfied||Somewhat Dissatisfied||Very Dissatisfied|
|The way in which their child's primary care physician provides medical care||71%||23%||4%||2%|
|The way in which child's primary care physician coordinates the medical care their child receives||71%||23%||4%||2%|
|Support parent receives for their role in caring for their child with special health care needs||70%||22%||6%||2%|
|Information parent receives on medical care for their child with special health care needs||56%||31%||9%||4%|
|Support available to help parent provide care for their child with special health care needs||53%||31%||10%||6%|
|TABLE 2. Survey Findings on Parent Information|
|Type of Information: Frequency with which Parent can Obtain Information If Needed||Always/
|Information on child's conditions||87%||13%|
|Information on child's developmental needs||87%||13%|
|Information on diagnostic procedures or tests performed on child||86%||14%|
|Information on MassHealth Managed Care enrollment procedures||71%||29%|
|Information on rights within MassHealth Managed Care if parent has a problem or disagrees with child's physician||71%||29%|
|Information on MassHealth Managed Care benefits||70%||30%|
|Information on research and latest medical discoveries related to child's special health care needs||68%||32%|
|Information on other programs that might help their child or family||60%||40%|
|TABLE 3. Survey Findings on Family Supports|
|Type of Support: Ease or Difficulty with which Parent can Find and Obtain Support If Needed||Very/
|Mental health counseling for other children in the family||80%||20%|
|Mental health counseling for parent||78%||22%|
|Support with school enrollment or early intervention services||78%||22%|
|Assistance coordinating different medical appointments and therapies that child may need||78%||22%|
|Mental health counseling for child with special health care needs||74%||26%|
|Locating family-to-family support groups||70%||30%|
|Assistance finding and arranging for respite care||68%||32%|
|TABLE 4. Survey Findings on Coordination of Care|
|Area of Care Coordination: Frequency of Primary Care Physician Involvement||Always/
|Communication with School or Early Intervention Program: when requested to do so by parent, primary care physician communicates with staff of child's early intervention program or school||73%||27%|
|Discharge Planning: primary care physician plays an active role in the discharge planning process when child is hospitalized||72%||28%|
|Home Care: primary care physician (or staff) makes arrangements for home care when it is needed||70%||30%|
|Communication with Home Care Providers: primary care physician (or staff) communications regularly with home care providers about the care child receives||67%||33%|
|TABLE 5. Summary of Family Needs Assessment|
|Issue||Survey Findings||Focus Group Findings|
|Information||Types of information parents have needed but had the most difficulty obtaining include information on:
||Several parents identified the need for all information to be simplified so that more parents could understand it. Types of information noted include:
|Family Support||Types of supports parents have needed but have had difficulty obtaining include:
||Several parents recommended that parents have a Parent/Patient Advocate to provide support. Again, they referred to problems with school health services. The role of the Advocate would be:
|Care Coordination||Specific areas of care coordination that need improvement include:
||Focus group participants consistently mentioned school health services as a major problem. Problems noted included availability of services as well as parents' limited knowledge of services actually provided to their children.
Focus group discussions confirmed that, while many parents are unhappy with coordination and information related to school health services, they do not necessarily expect their child's primary care physician to play a role in coordinating their child's treatment at school.
|TABLE 6. Survey Findings on PCC Satisfaction|
|Satisfaction with...||Very Satisfied||Somewhat Satisfied||Somewhat Dissatisfied||Very Dissatisfied||Most Common Factors Associated with Dissatisfaction|
|The relationships PCC has with parents of patients with special health care needs||57%||35%||7%||1%||
|The relationships PCC has with specialists to whom they refer children with special health care needs||45%||49%||6%||0%||
|Their role as a Primary Care Clinician for children with special health care needs||36%||53%||11%||0%||
|TABLE 7. Summary of PCC Needs Assessment|
|Issue||Key Survey and Focus Group Findings|
|Coordination with Specialists||
|Coordination with Home Care and Hospital Discharge Planning||
|Coordination with Schools||
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