An Exploration of the Stressors, Coping Resources, and Resiliency of Rural Mothers of Children with Special Needs

A child with a severe disability intensifies the demands facing a family (Beck, Hastings, Daley, & Stevenson, 2004; Martin & Baker, 2001; Withers & Bennett, 2003). Mothers specifically face an intense challenge, a concern as a mother’s wellbeing directly impacts her child’s emotional well-being (Kobe & Hammer, 1994), physical development, and progress within treatment (Lessenberry & Rehfeldt, 2004). These challenges are further heightened for women living in rural communities as little has changed for individuals with disabilities in rural communities over the past twenty years (Letvak, 2002). Although heightened stress among these mothers is significant, it is unclear how best to minimize stress and facilitate adaptive coping and resiliency among these women. This qualitative dissertation was an exploration into the stressors, coping resources, and resiliency of rural mothers of children with severe disabilities. Ten mothers of children with severe disabilities living in rural, Southeastern communities participated in a semi-structured interview. Supplementary sources of data include member-checking interviews, participant observation, and reflective journaling. Data derived from these sources include stressors, coping resources, and resiliency factors. Identified stressors include the absence of services, the insufficiency of available services, the effort required to locate and access services outside the community, social stressors, financial demands, and stressors stemming from personal attributes. All of the coping strategies listed by the participants shared similarities with those utilized by mothers of children with special needs not living in rural areas (Baun, 2002; Ferguson, 2002; Keller, & Honig, 2004). However, social support and spirituality, two identified coping techniques, are highly reflective of traditional, rural culture (Letvak, 2002; Nordal & Hill, 1999; Slama, 2004b; Wagenfeld, 2003). The mothers also identified their primary sources of resiliency to be external to them, their child/family service providers or God. All of the participants had recommendations for additional, beneficial resources for themselves and their children. These results are informative and significant to research, practice, and advocacy. Ultimately, it is hoped that this study may assist in empowering members of this marginalized group, advancing beneficial governmental policies, and informing interventions to enhance the wellbeing of these mothers and children

Modified Chrispin-Norman chest radiography score for cystic fibrosis: observer agreement and correlation with lung function

Contains fulltext : 96114.pdf ( ) (Closed access)OBJECTIVE: To test observer agreement and two strategies for possible improvement (consensus meeting and reference images) for the modified Chrispin-Norman score for children with cystic fibrosis (CF). METHODS: Before and after a consensus meeting and after developing reference images three observers scored sets of 25 chest radiographs from children with CF. Observer agreement was tested for line, ring, mottled and large soft shadows, for overinflation and for the composite modified Chrispin-Norman score. Correlation with lung function was assessed. RESULTS: Before the consensus meeting agreement between observers 1 and 2 was moderate-good, but with observer 3 agreement was poor-fair. Scores correlated significantly with spirometry for observers 1 and 2 (-0.72<R<-0.42, P < 0.05), but not for observer 3. Agreement with observer 3 improved after the consensus meeting. Reference images improved agreement for overinflation and mottled and large shadows and correlation with lung function, but agreement for the modified Chrispin-Norman score did not improve further. CONCLUSION: Consensus meetings and reference images improve among-observer agreement for the modified Chrispin-Norman score, but good agreement was not achieved among all observers for the modified Chrispin-Norman score and for bronchial line and ring shadows

A computed tomography scoring system to assess pulmonary disease among premature infants

CONTEXT AND OBJECTIVE: High-resolution computed tomography (HRCT) is considered to be the best method for detailed pulmonary evaluation. The aim here was to describe a scoring system based on abnormalities identified on HRCT among premature infants, and measure the predictive validity of the score in relation to respiratory morbidity during the first year of life. DESIGN AND SETTING: Prospective cohort study in Instituto Fernandes Figueira, Fundação Oswaldo Cruz. METHODS: Scoring system based on HRCT abnormalities among premature newborns. The affected lung area was quantified according to the number of compromised lobes, in addition to bilateral pulmonary involvement. Two radiologists applied the score to 86 HRCT scans. Intraobserver and interobserver agreement were analyzed. The score properties were calculated in relation to predictions of respiratory morbidity during the first year of life. RESULTS: Most of the patients (85%) presented abnormalities on HRCT, and among these, 56.2% presented respiratory morbidity during the first year of life. Scores ranged from zero to 12. There was good agreement between observers (intraclass correlation coefficient, ICC = 0.86, confidence interval, CI: 0.64-0.83). The predictive scores were as follows: positive predictive value 81.8%, negative predictive value 56.3%, sensitivity 39.1%, and specificity 90.0%. CONCLUSION: The scoring system is reproducible, easy to apply and allows HRCT comparisons among premature infants, by identifying patients with greater likelihood of respiratory morbidity during the first year of life. Its use will enable HRCT comparisons among premature infants with different risk factors for respiratory morbidity