Ity in religious terms. Do you think about it this way

Ity in religious terms. Do you think about it this way sometimes? In what way? Do others in your family think about [child’s condition] in a religious way? What do they say?” Although references to religion occurred spontaneously throughout the interview, most religious narratives occurred in response to these questions. Interviews were approximately 90 minutes and were order Caspase-3 Inhibitor digitally recorded and transcribed verbatim. Transcriptions resulted in 1,640 single-spaced pages of interview data. Mothers also completed a modified version of the Fewell Religion Scale (Fewell, 1986; Skinner, Correa, Skinner, Bailey, 2001). This scale is organized into two empirically derived subscales: institutionalized religion as a form of social support and religion in its more personalized form as beliefs and faith as a support. We modified the wording of the questions to reflect current use and our focus on fragile X (e.g., “child with fragile X” instead of “handicapped child”). We also modified the scale by adding three items to assess self-reported religiosity, religious affiliation, and frequency of participation in church. These items were not part of the subscales and were analyzed separately. For all mothers, Cronbach’s alpha coefficients on the subscales were .87 (Institutional Support) and .93 (Personal or Spiritual Beliefs), indicating that the two subscales of the adapted Fewell Religion Scale were internally consistent. This scale was administered approximately 6 months before the interview as part of a set of quantitative assessments to measure family adaptation to FXS. Although it is possible that the scale and other measures influenced mothers’ responses in the interview, the length of time between administration of the measures and the different nature of the wording of the items and the interview questions decreased the likelihood that mothers’ narratives were influenced by the religion scale.NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author ManuscriptIntellect Dev Disabil. Author manuscript; available in PMC 2011 July 5.Michie and SkinnerPageOur examination of narratives in the semistructured interviews was informed by Frank’s (1995) discussion of illness stories and his injunction to hear these wounded storytellers thinking “with” stories instead of “about” them (p. 23). We also used accepted narrative analysis methods of anthropologists and sociologists, focusing on the cultural and linguistic resources individuals drew on to formulate stories that made personal sense of the flow of events in their lives (Riessman, 1993; Skinner, Bailey, Correa, Rodriguez, 1999; Skinner, Rodriguez, Bailey, 1999). For this analysis, we collated all references to religion in the interview transcripts, and we examined how mothers incorporated religious beliefs or discourses into narratives of their everyday experiences and understandings of childhood disability. We also recorded elements or themes of each mother’s narrative in data matrix displays (Miles Huberman, 1994) to do a systematic content analysis and comparison of how many mothers incorporated specific elements, such as the child being a blessing or FXS being part of God’s plan. Descriptive statistics and frequencies were calculated for responses to the Fewell Religion Scale.NIH-PA Author Manuscript Results NIH-PA Author Manuscript NIH-PA Author ManuscriptOf the 60 mothers we interviewed for this study, 37 (62 ) indicated in their narratives (T0901317 site through substantive references to God, f.Ity in religious terms. Do you think about it this way sometimes? In what way? Do others in your family think about [child’s condition] in a religious way? What do they say?” Although references to religion occurred spontaneously throughout the interview, most religious narratives occurred in response to these questions. Interviews were approximately 90 minutes and were digitally recorded and transcribed verbatim. Transcriptions resulted in 1,640 single-spaced pages of interview data. Mothers also completed a modified version of the Fewell Religion Scale (Fewell, 1986; Skinner, Correa, Skinner, Bailey, 2001). This scale is organized into two empirically derived subscales: institutionalized religion as a form of social support and religion in its more personalized form as beliefs and faith as a support. We modified the wording of the questions to reflect current use and our focus on fragile X (e.g., “child with fragile X” instead of “handicapped child”). We also modified the scale by adding three items to assess self-reported religiosity, religious affiliation, and frequency of participation in church. These items were not part of the subscales and were analyzed separately. For all mothers, Cronbach’s alpha coefficients on the subscales were .87 (Institutional Support) and .93 (Personal or Spiritual Beliefs), indicating that the two subscales of the adapted Fewell Religion Scale were internally consistent. This scale was administered approximately 6 months before the interview as part of a set of quantitative assessments to measure family adaptation to FXS. Although it is possible that the scale and other measures influenced mothers’ responses in the interview, the length of time between administration of the measures and the different nature of the wording of the items and the interview questions decreased the likelihood that mothers’ narratives were influenced by the religion scale.NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author ManuscriptIntellect Dev Disabil. Author manuscript; available in PMC 2011 July 5.Michie and SkinnerPageOur examination of narratives in the semistructured interviews was informed by Frank’s (1995) discussion of illness stories and his injunction to hear these wounded storytellers thinking “with” stories instead of “about” them (p. 23). We also used accepted narrative analysis methods of anthropologists and sociologists, focusing on the cultural and linguistic resources individuals drew on to formulate stories that made personal sense of the flow of events in their lives (Riessman, 1993; Skinner, Bailey, Correa, Rodriguez, 1999; Skinner, Rodriguez, Bailey, 1999). For this analysis, we collated all references to religion in the interview transcripts, and we examined how mothers incorporated religious beliefs or discourses into narratives of their everyday experiences and understandings of childhood disability. We also recorded elements or themes of each mother’s narrative in data matrix displays (Miles Huberman, 1994) to do a systematic content analysis and comparison of how many mothers incorporated specific elements, such as the child being a blessing or FXS being part of God’s plan. Descriptive statistics and frequencies were calculated for responses to the Fewell Religion Scale.NIH-PA Author Manuscript Results NIH-PA Author Manuscript NIH-PA Author ManuscriptOf the 60 mothers we interviewed for this study, 37 (62 ) indicated in their narratives (through substantive references to God, f.

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