Cancer genetic health communication in families tested for hereditary breast/ovarian cancer risk: a qualitative investigation of impact on children's genetic health literacy and psychosocial adjustment.

Children's literacy about the genetics of late-onset hereditary breast/ovarian cancer (HBOC) often develops through conversations with parents about BRCA gene testing and adults' cancer diagnoses. These conversations may promote early understanding of HBOC, but the long-term impact on children's psychosocial adjustment remains unclear. We investigated cancer genetic health communication in BRCA-tested families to consider benefits, risks, and moderating influences on children's understanding and well-being. Adolescent and young adult children (ages 12-24) of mothers who underwent BRCA testing 1+ years previously completed qualitative interviews that were transcribed, coded (intercoder K ≥ .70), and content-analyzed (N = 34). Children readily recalled conversations about BRCA testing and HBOC (100%) that they considered important (94%), but implications for children were ambiguous and obfuscated their concerns. Psychosocial impacts were muted, multifaceted, and displayed a range of favorable (82%), neutral (71%), and unfavorable (59%) response-frequently co-occurring within the same child over different aspects (e.g., medical, concern for self and others). Children verbalized active (50%) and avoidant (38%) coping strategies: about 1:5 endorsed transient thoughts about vulnerability to HBOC, 1:3 had not further considered it, and all reported specific actions they had or would undertake to remain healthy (e.g., diet/exercise). A majority (94%) of children had or would consider genetic testing for themselves, usually later in life (59%). Long-term outcomes highlighted benefits (awareness of HBOC, psychological hardiness, healthier lifestyle behaviors), as well as some psychosocial concerns that could be managed through interventions promoting genetic health literacy.

A Technical Assistance Model for Guiding Service and Systems Change.

Technical assistance (TA) has been a ubiquitous part of the implementation of policies, programs, and services across public and private enterprise for decades. There have been few attempts to identify critical components of TA and evaluate its effectiveness. Qualitative analysis of interviews with experienced TA providers suggested a continuum of practice anchored at each end by approaches termed content-driven and relationship-based. Content-driven approaches focus on information transfer and referral whereas relationship-based approaches center on the facilitation of behavior and systems change. TA is almost always a mix of these approaches. Fitting the right approach to each situation is the key to success. The structure of TA is conceptualized as a three-phase set of activities (decision-making, implementation, and evaluation) supported by an effective partnership and informed by the overarching context. The strategies for effective TA are consistent with major theories of behavior change but need to be further evaluated and refined.

Psychometric Evaluation of a Consumer-Developed Family-Centered Care Assessment Tool.

The objective of this study was to create a psychometrically sound measure of family-centered care, the Family-Centered Care Assessment (FCCA), developed through a process led by families in collaboration with maternal and child health leaders. The items for the FCCA scale were initially developed by families of children and youth with special needs in partnership with pediatric providers and researchers. Using an Institutional Review Board-approved research protocol, the questions were revised based on input from focus groups of diverse parents in three states. Parental responses (N = 790) to the revised 59-item survey were collected online from families in 49 states. Item distributions uniformly showed excellent spread. A principal axes factor analysis confirmed the existence of a single factor. Rasch modeling item analyses identified a reduced subset of 24 items that demonstrated excellent psychometric properties. All items met the criteria for a linear Rasch scale. Empirical evidence in support of the construct validity of the 24-item measure was derived: all items had a positive and substantial item-total correlation; person alpha scale reliability was >0.80 and the item reliability was >0.90; both separation indices were >2.0; infit and outfit statistics were within 0.5-1.5; and item difficulties ranged between -2 and +2 logits. Strong rank-ordered associations and large effect sizes were observed for six indicators of quality of care. This study's family-led process produced a tool, the FCCA, to measure families' experience of care with excellent psychometric properties.

Psychometric evaluation of a cultural competency assessment instrument for health professionals.

BACKGROUND: Few valid and reliable measures exist for health care professionals interested in determining their levels of cultural and linguistic competence. OBJECTIVE: To evaluate the measurement properties of the Cultural Competence Health Practitioner Assessment (CCHPA-129). METHODS: The CCHPA-129 is a 129-item web-based instrument, developed by the National Center for Cultural Competence. Responses on the CCHPA -129 were examined using factor analysis; Rasch modeling; and differential item functioning across race, ethnicity, sex, and profession. SUBJECTS: A total of 2504 practitioners, including 1864 nurses (RN/LPN/BSN); 341 clinicians (PA/NP); and 299 physicians (MD/DO), who completed the CCHPA-129 online between 2005 and 2008. RESULTS: Three factors representing domains of Knowledge, Adapting Practice, and Promoting Health for culturally and linguistically diverse populations accounted for 46% of the variance. Among Knowledge factor items, 53% (23/43) fit the Rasch model, item difficulties ranged from -1.01 logits (least difficult) to +1.11 logits (most difficult), separation index (SI) 13.82, and Cronbach's α 0.92. Forty-seven percent (21/44) Adapting Practice factor items fit the model, item difficulties -0.07 to +1.11 logits, SI 11.59, Cronbach's α 0.88; and 58% (23/39). Promoting Health factor items fit the model, item difficulties -1.01 to +1.38 logits, SI 22.64, Cronbach's α 0.92. Early evidence of validity was established by known groups having statistically different scores. CONCLUSIONS: The 67-item CCHPA-67 is psychometrically sound. This shorted instrument can be used to establish associations between practitioners' cultural and linguistic competence and health outcomes as well as to evaluate interventions to increase practitioners' cultural and linguistic competence.

Implementation of culturally and linguistically competent policies by state Title V Children with Special Health Care Needs (CSHCN) programs.

OBJECTIVE: This descriptive study was intended to identify actual actions, steps and processes of Children with Special Health Care Needs (CSHCN) programs to develop, implement, sustain and assess culturally and linguistically competent policies, structures and practices. METHODS: An online 52-item mixed format survey of Maternal and Child Health (MCH) CSHCN directors was conducted. In April 2003 and May 2004, 59 directors were solicited to participate in the survey and 42 (86%) responded. Standard quantitative and qualitative analyses of the data were conducted to address key questions linked to the study's overall objective. RESULTS: Findings indicated that almost all respondents are implementing some actions to provide culturally and linguistically competent services including adapting service practices, addressing workforce diversity, providing language access, engaging communities and including requirements in contracts. These individual actions were less often supported by processes such as self-assessment and creating an ongoing structure to systematically address cultural and linguistic competence. Programs are challenged to implement cultural and linguistic competence by state agency organization and budget restrictions. CONCLUSIONS: The results of the study indicate a continued need for support within state MCH CSHCN programs in order to maintain or enhance the systematic incorporation of culturally and linguistically competent efforts.