The Program for the Study of Health Care Relationships funded 11 researchers in CT to study various aspects of health care relationships and adherence. The individuals listed below each received grants for one year (2001-02). They were awarded funds on the basis of a competitive review process and the scientific merit of their proposals. The wide range of disciplines they represent and their research interests demonstrated the diversity and complexity inherent in studying health care relationships.

• Development of an Instrument to Measure Patients' Trust of Health Care Providers
• Exploration of the Effect of Nausea, Self-Efficacy, and Health Care Relationships on Medication Adherence in HIV/AIDS Patients
• Advance Care Planning: A Team Approach
• Assisting Older Adults To Communicate Their Pain After Surgery
• The Effect of a Specialized RN Intervention Designed to Maximize Patient-Provider Relationships on Adherence to Anti-Depressant Medication
• Pilot Study of Rapid Electronic Adherence Reporting with Provider Feedback on Adherence to Antiretroviral Therapy (HCR 01-12)
• Development of a Measure of Family Management of Childhood Chronic Illness
• The Contribution of Health Care Professionals to Parent and Child Self-Management of Type 1 Diabetes
• Enhancing Treatment Access and Adherence among Women of Hispanic Origin: The Roles of Relationships and Cultural Responsiveness in Behavioral Health Care
• Elicitation of Patient with Adaptive Conjoint Analysis

Development of a Measure of Family Management of Childhood Chronic Illness

Kathleen Knafl, PhD, FAAN, Principal Investigator Jane Dixon, PhD, Co-investigator Margaret Grey, DrPH, FAAN, Collaborator Gwynne Holcombe, BS, Project Director

In order to understand family life in the context of childhood chronic illness, it is necessary to understand the various ways by which the illness and treatment regimen are incorporated into family life. Such understanding will contribute to our ability to develop customized health care interventions that address the unique needs of individual families and contribute to the family's ability to manage childhood chronic illness in ways that result in illness control, adherence, and healthy child and family functioning. The purpose of this project was to begin development of a measure of patterns of family response to childhood chronic illness (family management style - FMS). Specific objectives included: complete development of items for the Family Management Style Survey (FMSS); establish the content validity and clarity of items for the FMSS; assess the psychometric properties of the FMSS. Funding from the Program for Health Care Relationships supported the completion of the first two objectives and the development of a proposal to the National Institutes of Health supported the completion of the third objective.

Building on the investigator's prior conceptual and empirical work as well as a comprehensive review of the literature on family response to childhood chronic illness, 97 items were generated. The items were based on the Family Management Style Framework and between 8 and 15 items were generated for each of the eight major themes comprising the framework. The content validity of the items was assessed eliciting input from experts in family nursing research and practice and by conducting "think aloud" interviews with parents of children with a chronic illness.

Fifteen experts were asked via an e-mail survey to rate the relevance and clarity of each of the 97 items. Twelve experts returned the survey and their input provided strong support for both the clarity and relevance of the majority of items. Based on the expert feedback, items we deleted and reworded and a 64-item draft of the instrument was developed. Following completion of this phase of the project, 27 parents of children with a chronic condition were recruited to provide additional feedback on the 64-item version of the instrument. Parents were purposively recruited from several specialty and primary care clinics to provide a diversity of demographic characteristics, family structures, and illness situations. Parents we requested to "think aloud" their interpretation of each of the 64 items as well as to indicate any items judged to be offensive or emotionally charged. Analysis of the think aloud interviews contributed to the identification of ambiguous items as well as items parents judged to be offensive or emotionally charged. With funding from the National Institutes of Health (1R01, NR08048-01) a revised version of the FMSS is being tested through a large scale survey of 700 parents of children with a chronic condition. The FMSS will make it possible to identify distinct patterns of family response to childhood illness and will contribute to the development of individualized interventions that address the unique needs of diverse families.

For further information, contact Kathleen Knafl (203-737-5060 or Kathleen.Knafl@Yale.edu)

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