Assessment of the Psychometric Properties of the Family Management Measure

It is estimated that 18% of children from birth to 18 years of age have a chronic physical, developmental, behavioral, or emotional condition and use more health or related services than other children generally (vanDyck, Kogan, McPherson, Weissman, & Newacheck, 2004). Although the majority of these children have mild conditions that do not limit their activity, approximately one-third experience moderate to severe limitations of activity (Barlow & Ellard, 2006). Regardless of the severity of the condition, all children, along with their families, face multiple challenges; some adapt well to life with a chronic condition while others struggle to do so. Families respond in various ways to childhood chronic illness, and family response is closely related to child's outcomes (Graf, Landolt, Mori, & Boltshauser, 2006; Rodenburg, Marie Meijer, Dekovic, & Aldenkamp, 2006; Thompson et al., 2003). For example, studies consistently have shown that the family variables of conflict and cohesion are significant mediators of children's adaptation to illness (Berge & Patterson, 2004; Graf et al., 2006; Rodenburg et al., 2006; Thompson et al., 2003). Recognizing that multiple family variables contribute to child outcomes, researchers have developed a broad array of measures to study different aspects of family response, including those that assess specific family processes and overall family functioning, family/parent coping, and impact of childhood illness on family life (Alderfer et al., 2008). Studies of family response to a child's chronic condition also have addressed family management of the treatment regimen and the ways in which families incorporate the regimen and their child's special needs into everyday family life (Clarke-Steffen, 1997; Ginsburg et al., 2005; Horner, 1998; Knafl, Breitmayer, Gallo, & Zoeller, 1996). Because of the varying demands and treatment regimens associated with different chronic conditions, much of the work in this area has been condition-specific, including development of measures to assess family management of a specific condition such as diabetes (Harris et al., 2000) or asthma (McQuaid, Walders, Kopel, Fritz, & Klinnert, 2005). However, both clinicians and family researchers have noted the merits of taking a noncategorical approach to studying families and providing services (Perrin et al., 1993; Stein & Jessop, 1982; Wallender & Varni, 1998). Noncategorical studies of family response to a child's chronic condition focus on understanding the common psychosocial challenges experienced by families. Research based on a noncategorical approach can generate knowledge of family response to conditions for which there are no condition-specific measures, as well as enable comparative study of family response across conditions. To date, most noncategorical studies of family management of childhood chronic conditions have been qualitative, with a focus on describing specific aspects of families’ management efforts (Knafl & Deatrick, 2003). Based on this research, as well as our own noncategorical studies, the first three authors developed the Family Management Style Framework (FMSF) to conceptualize parents’ perceptions of the family's management efforts (Knafl et al., 1996; Knafl & Deatrick, 2003). The FMSF comprises the following eight dimensions: Child Identity (views of the child and the extent to which those views focus on illness and vulnerabilities or normalcy and capabilities); Family Focus (assessment of the balance between condition management and other aspects of family life); Future Expectations (assessment of the implications of the condition for the child's and family's future); Illness View (beliefs about the seriousness and course of the illness); Management Approach (assessment of the extent to which the family has developed a routine for managing the condition); Management Mindset (views about the ease or difficulty of carrying out the treatment regimen); Parenting Philosophy (goals and values that guide condition management); and Parental Mutuality (beliefs about the extent to which partners have shared views of their situation and approach to condition management). The FMSF focuses on key aspects of how families define and manage family life in the context of a child's chronic condition, with particular attention paid to how condition management is incorporated into everyday life. As such, it is more focused than family stress and coping frameworks such as the Double ABCX Model (McCubbin & Patterson, 1983) or the Resiliency Model of Family Stress, Adjustment, and Adaptation (McCubbin & McCubbin, 1993), which address overall family adaptation to stressful situations. The FMSF fills a unique niche that complements other frameworks and contributes to a more comprehensive understanding of family response to having a child with a chronic condition. Our review of 55 studies of family management of childhood chronic conditions (excluding studies of families of children whose condition resulted in significant developmental delays) supported the salience and noncategorical nature of the eight FMSF dimensions, indicating they are important aspects of family management that span multiple chronic conditions and family life cycle phases (Knafl & Deatrick, 2003). The eight dimensions of the FMSF provided the conceptual underpinnings for development of the Family Management Measure (FaMM). The FaMM measures parents’ perceptions of family management of the child's treatment regimen and incorporation of the regimen into everyday family life; it is intended to complement other measures that focus on overall family adaptation to a stressful situation such as a child's chronic condition or management of a single condition. Our intent in developing the FaMM is to provide a measure that will be applicable to multiple conditions and families with a broad age range of children. A valid, reliable measure of key aspects of family management will set the stage for further research on factors that influence the quality of child and family response to chronic conditions. Being relevant to a broad array of families, the FaMM will contribute to the study of family management over time, comparison of family management at different points in the family's and child's life cycle, and comparison across families managing different chronic conditions. The FaMM also will contribute to the development and testing of interventions to change those aspects of family management that are problematic and strengthen those aspects that support optimal child and family outcomes. We also anticipate that having a quantitative measure of family management will contribute to the continuing development of the FMSF, including the further refinement of the dimensions and exploration of their interrelationships. This paper reports the results of a study to assess the psychometric properties of the FaMM, including factor structure, internal consistency, and test-retest reliability, and to construct validity. The overall design of the study was grounded in DeVellis's (2003) approach to scale development. In particular, our assessment of the construct validity of the FaMM was consistent with DeVellis's view of construct validity, which emphasizes the extent to which a new measure performs in a theoretically meaningful way. We anticipated developing a reliable measure that would include multiple scales, some reflecting greater ease in family management and some reflecting greater difficulty. We hypothesized a significant relationship between the FaMM scales and established measures of child functional status, child behavioral problems, and family functioning. We expected a positive relationship between child and family functioning and FaMM scales indicative of greater ease in condition management and a negative relationship between child and family functioning and FaMM scales indicative of greater difficulty in family management. We expected correlations to be moderate, since FaMM is intended to measure a construct that is related to, but distinct from, both family and child functioning.