Beyond the Water's Edge: Charting the Course of Managed Care for People with Disabilities - Conference Resource Book. Overall Findings of Needs Assessment

11/01/1996

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/
Usually
Sometimes/
Never
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/
Somewhat Easy
Very/
Somewhat Difficult
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/
Usually
Sometimes/
Never
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:
  • research and the latest medical discoveries related to their child with special health care needs
  • MassHealth Managed Care enrollment procedures, benefits and rights
  • other programs that might help their child or family
Several parents identified the need for all information to be simplified so that more parents could understand it. Types of information noted include:
  • medical information
  • information on other services for their child or family
  • information on benefits
Family Support Types of supports parents have needed but have had difficulty obtaining include:
  • mental health counseling services (for their child with special needs, for themselves, or for their other children)
  • family-to-family support groups
  • respite care
  • assistance coordinating medical appointments
  • support with school enrollment or early intervention services
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:
  • to assist parents at school team meetings in order to ensure that their child's rights are supported
  • to monitor the services the school provides in order to ensure that services are rendered and the recommended treatment plan is followed
Care Coordination Specific areas of care coordination that need improvement include:
  • hospital discharge planning
  • home care
  • school health services
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%
  • time constraints
  • poor communication
  • uncooperative families/failure of families to keep appointments and follow through
  • stressed parents
The relationships PCC has with specialists to whom they refer children with special health care needs 45% 49% 6% 0%
  • lack of communication
  • inaccessibility
  • lack of teamwork and cooperation
  • difficulty in coordination of care
Their role as a Primary Care Clinician for children with special health care needs 36% 53% 11% 0%
  • time constraints (33% reported that time constraints made providing primary care to children with special health care needs difficult)
  • red tape/paperwork
  • insurance company rules and restrictions
  • lack of services/programs
  • lack of financial reimbursement
  • inability to coordinate multiple providers

 

TABLE 7. Summary of PCC Needs Assessment
Issue Key Survey and Focus Group Findings
Coordination with Specialists
  • 27% of survey respondents reported that, when they make a referral to a specialist, they sometimes or never identify specific questions they want the specialist to answer
  • 42% of survey respondents reported that they never specify a time frame for receiving feedback from specialists
  • Lack of communication and delayed feedback by specialists were reported as problems often encountered by focus group participants
  • Focus group participants noted that problems arise when specialists refer their patients to other specialists without the PCC's knowledge
Coordination with Home Care and Hospital Discharge Planning
  • 53% of survey respondents reported that they sometimes or never participate in the development of home care plans for children with special health care needs; 10% reported they always participate in home care plan development
  • 34% of survey respondents reported that, when a child in their practice requires home care, the referral is only sometimes initiated by them. Hospitals were reported as a common source of the home care referral.
  • Some focus group participants felt that the home care system works well for children with acute needs, but is more problematic for children with chronic, complex conditions. Their feeling was that these children require an exceptional amount of time to coordinate all of their various needs.
  • Focus group participants reported burdensome paperwork and high turnover in home care agencies as causing a large drain on PCCs' time. Turnover in home care agencies resulted in little communication between old and new caregivers, presenting PCCs with a greater challenge obtaining information about their patient
Coordination with Schools
  • In focus group discussion, participants noted that coordination with school health services is a major challenge. Their concerns included:
    • insufficient school personnel or resources to meet the needs of children with special health care needs
    • difficulty contacting school providers since parents are not always aware of the name of the school provider and because school providers are usually unavailable at the times when PCCs are available to communicate with them by telephone
Information
  • Survey results revealed that PCC's are most likely to seek information on issues related to the care of children with special health care needs from specialists (96% of respondents), colleagues within their practice (89%), medical libraries (67%) and early intervention providers (61%).
  • Survey respondents reported that they are least likely to seek information on issues related to the care of children with special health care needs from on on-line medical sources and programs run by public and other social service agencies.
  • When asked to elaborate on their information needs during focus groups, participants reported that they typically did not use state agencies as an information resource because of the difficulty in determining the most appropriate agency to contact, as well as the most appropriate person in the agency.
Parent Role
  • 87% of survey respondents reported that parents are one of the most common sources of care coordination.
  • 18% of survey respondents reported that parents are the ones who typically monitor the implementation of home care plans.
  • In focus groups, PCCs reported that they rely heavily on parents to coordinate their child's care. While some PCCs felt that this arrangement works well for some families, they believed that it is very demanding on families and not all parents have the ability, information and support to perform this difficult role well.
  • Focus group participants recommended that there be a centralized patient advocate case management system which would include team meetings with physicians. They reported that the most difficult aspect of caring for children with special health care needs is ensuring that full consideration is given to all of the patient's multiple health and information needs. They strongly believed that a patient advocate case manager could help physicians, patients and their families in this regard.

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