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Childhood Interstitial Lung Disease in a Large Tertiary Care Center: Implications of a Family Needs Assessment Survey
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A6319 - Childhood Interstitial Lung Disease in a Large Tertiary Care Center: Implications of a Family Needs Assessment Survey
Author Block: K. Mogren, S. K. Welsh, K. Krone, M. P. Fishman, A. M. Casey; Division of Pulmonary and Respiratory Diseases, Boston Children's Hospital, Boston, MA, United States.
Rationale: Childhood interstitial lung disease (chILD) comprises a heterogeneous group of diffuse lung diseases with significant respiratory morbidity and mortality. While there are national guidelines for the classification, evaluation and management of chILD, there are no standards informing assessment of holistic care and psychosocial support. Given the unique needs of this population, we hypothesized the existence of unidentified and unmet supportive care needs of families with chILD.
Methods: A questionnaire was generated with input and collaboration between pulmonary social workers, pediatric pulmonologists, and parents of children with chILD. The survey was distributed at clinical visits and at a chILD family weekend. Survey questions addressed psychosocial themes such as financial stress, family support system, and access to supportive services.
Results: Twenty-two surveys were collected. Most families (91%) identified as Caucasian, married (82%), and 73% had completed postsecondary education. 55% of parents quit their job or reduced their work hours due to their child’s medical needs. Access to chILD specific educational materials was identified as a key need. 91% of families listed their pulmonologist as their primary source of information. Equal numbers (27%) identified the medical literature and social media as sources of information. 23% identified the chILD Foundation as a source of information. Resources requested at the time of diagnosis included educational materials written by other parents (50%), physicians (45%), and facilitated connection with social work (36%), similarly affected families (41%) and support groups (41%). Additionally, families desired chILD specific written materials for the school setting (81%). Financial stressors were recognized as a significant concern by a minority of families (23%). A majority of respondents (55%) reported, “worrying about the future/uncertainty” as often or always stressful.
Conclusions: This survey represents the first time that a needs assessment has been performed specifically for families affected by chILD diagnoses. The goal is to guide targeted quality improvement interventions. While these findings may be most applicable to a large tertiary care center, the development of educational interventions stood out as a key initial step and tangible goal in ensuring effective family-centered care in chILD. Facilitated connection with social workers, other families, and support groups was another key identified goal.
Author Block: K. Mogren, S. K. Welsh, K. Krone, M. P. Fishman, A. M. Casey; Division of Pulmonary and Respiratory Diseases, Boston Children's Hospital, Boston, MA, United States.
Rationale: Childhood interstitial lung disease (chILD) comprises a heterogeneous group of diffuse lung diseases with significant respiratory morbidity and mortality. While there are national guidelines for the classification, evaluation and management of chILD, there are no standards informing assessment of holistic care and psychosocial support. Given the unique needs of this population, we hypothesized the existence of unidentified and unmet supportive care needs of families with chILD.
Methods: A questionnaire was generated with input and collaboration between pulmonary social workers, pediatric pulmonologists, and parents of children with chILD. The survey was distributed at clinical visits and at a chILD family weekend. Survey questions addressed psychosocial themes such as financial stress, family support system, and access to supportive services.
Results: Twenty-two surveys were collected. Most families (91%) identified as Caucasian, married (82%), and 73% had completed postsecondary education. 55% of parents quit their job or reduced their work hours due to their child’s medical needs. Access to chILD specific educational materials was identified as a key need. 91% of families listed their pulmonologist as their primary source of information. Equal numbers (27%) identified the medical literature and social media as sources of information. 23% identified the chILD Foundation as a source of information. Resources requested at the time of diagnosis included educational materials written by other parents (50%), physicians (45%), and facilitated connection with social work (36%), similarly affected families (41%) and support groups (41%). Additionally, families desired chILD specific written materials for the school setting (81%). Financial stressors were recognized as a significant concern by a minority of families (23%). A majority of respondents (55%) reported, “worrying about the future/uncertainty” as often or always stressful.
Conclusions: This survey represents the first time that a needs assessment has been performed specifically for families affected by chILD diagnoses. The goal is to guide targeted quality improvement interventions. While these findings may be most applicable to a large tertiary care center, the development of educational interventions stood out as a key initial step and tangible goal in ensuring effective family-centered care in chILD. Facilitated connection with social workers, other families, and support groups was another key identified goal.
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