Emerging research demonstrates the benefits of care plan use for children with complex health care needs [14
]. While much of this research has examined the usefulness of care plans in conjunction with formal care coordination programs, to our knowledge there is a dearth of research that has explored parent perceptions regarding the content of a care plan or its usefulness as a tool independent of a program of care. Almost universally, the care plan was viewed as a useful tool for both HCPs and parents. Most notably, the care plan emerged as a tool that centralized and focused the care of the child and levelled the hierarchical relationship between HCPs and parents, thereby enhancing the reciprocal exchange of information and strengthening relationships. Parents described how the care plan enhanced their feelings of empowerment and credibility. The care plan was described as a collaborative, comprehensive document that acknowledged parents as experts and advocates in their child’s care. Interestingly, in their study examining the perspectives of parents and physicians on the role of parents as information intermediaries, Stille and colleagues found that parents were more comfortable than physicians in holding this role. However, the degree to which parents felt comfortable in this role varied [27
]. These findings reveal an important implication of the findings from this study in that care plans should be considered a complementary practice. From a safety lens the content of the care plan has the potential for varied use and interpretation which could equally result in a positive or negative outcome. The care plan should not replace discussions between parents and HCPs related to the child’s most up-to-date treatment plan and it should not be assumed that all parents are similarly comfortable acting as information intermediaries. Furthermore, clear guidelines around who updates the care plan and how often are crucial.
Care plans are used nationally and internationally and have been described in many different forms – from formal, clinician-developed comprehensive care plans to informal, parent-developed summaries of a child’s health [20
]. This exploratory study offers positive preliminary findings that suggest that comprehensive care plans are a useful component of care for CMC, complementing emerging research in this area. One study of a Medical Home [36
] briefly mentioned using care plans as part of a range of interventions aimed at improving care coordination for children with chronic conditions [37
]. These authors reported family satisfaction with use of the care plan specifically in helping explain a child’s condition and medical issues to school and emergency department personnel. Our findings are consistent with earlier reports and research on broader issues of care provision for CMC which emphasize the association of parent-professional partnerships and enhanced communication and information sharing, with improved outcomes for CSHCN and their families [38
Several limitations of this study are noted. First, as is common with qualitative research, interview and focus group discussions reflected the experiences of a limited number of participants and in this case, all from one tertiary care centre. This study occurred in Ontario, Canada where there is universal access to health care. This may limit the generalizability of findings to other jurisdictions which might have fewer or greater barriers, depending on the structure of health records, the system of support of families, and the accountability and responsibilities of care providers.
Efforts were made to capture a range of experiences with the care plan and sample variation, and discussion with all participants revealed many common and/or shared experiences. A minimum 3 month usage time was used for care plan study eligibility, but in doing so, despite actively seeking out negative cases, some informative cases in which care plans were not found to be helpful may have been missed. There was under-representation of primary care paediatricians in the focus groups compared with broad populations of CSHCN cared for in a medical home. However, as this sample of CMC were often acutely unwell and received care under a hospital-based medical home, which is a model of care delivery for this population that has grown exponentially in prevalence in the last few years, participating HCPs represented the typical circle of care for these families [40
]. Furthermore, while participants represented a culturally diverse sample, only participants who could communicate in English were included. CMC were purposely chosen to study care plans. These children are defined by high health care use, frequently involving multiple HCPs, in various places over long periods of time, and thus are likely a patient cohort who would substantially benefit from care plans. Although findings appear to be applicable to the broader group of CSHCN it is not know if less complex sub-groups of CSHCN would demonstrate similar findings. Further, the relationships in the emergent model are hypothesis generating; hence, research using quantitative methods to examine outcomes of care plan utilization is needed.
The findings from this study have implications for the design and implementation of care plans for CMC. The findings support a care plan template that is family-centered and includes content relevant to the medical and psychosocial needs of the child. A modified comprehensive care plan template based on participant feedback can be seen in Figure
, however, systematic evaluation is recommended prior to implementation. An integrated information system created for the development and sharing of care plans across providers and settings is essential. This can help facilitate accessing accurate information in a timely manner. An important contributor to the success of care plans is uptake by HCPs. As stated by many parents, the care plan is only useful if the HCP takes the time to read it and utilize it. The promising application of contemporary technologies such as mobile devices integrated into existing electronic health records may enhance the accessibility of care plans for ease of reading. Research addressing the further development and validation of comprehensive care plans and their impact on perceived outcomes identified in this study is needed in ultimately providing outcome data, examining optimal strategies for implementation, and costs associated with care plan creation and maintenance.