Life Participation in Parents of Children With CKD.
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Hughes Anastasia, Matus Gonzalez Andrea, van Zwieten Anita, Guha Chandana, Carter Simon, Wong Germaine, Coghlan Dale, Dominello Amanda, Craig Jonathan C, Howell Martin, Kim Siah, Manera Karine, O'Reilly Colm, Recabarren Silva Javier, Rejuso Angela, Sautenet Benedicte, Scholes-Robertson Nicole, Sluiter Amanda, Wu Rebecca, McCulloch Mignon, Armijo Natalia, Atilano-Carsi Ximena, de la Cerda Patricia, Gallardo Letelier Gabriel Alexis, Galvez Carla, Gonzalez-Agüero Nicole, Maldonado Maria, Pinto Viola, Reyes Lilian, Rodriguez Lena, Rojo Angelica, Sepúlveda Alejandro, Torrisi Luca G, Viecelli Andrea K, Admani Bashir, Foster Bethany J, Hamilton Alexander J, Jankauskiene Augustina, Johnson Rebecca J, Kerklaan Jasmijn, Liu Isaac, Marks Stephen D, Pruette Cozumel S, Schaefer Franz, Wolfenden Sebastian, Jaure Allison, SONG-Kids Life participation Workshop Investigators38, SONG-Kids Life participation Workshop Investigators
Аннотация
METHODS: We thematically analyzed data from the Standardized Outcomes in Nephrology-Children and Adolescents Initiative (SONG-Kids) life participation workshops involving children with childhood CKD, parents or caregivers, and health professionals, for content related to perspectives on life participation among parents of children with CKD.
RESULTS: A total of 4 international consensus workshops were conducted (1 in-person in English and 3 online-2 in English and 1 in Spanish) with 171 participants, including 79 patients and parents or caregivers and 92 health professionals from 16 countries. Overall, 4 themes were identified-health priorities undermining ability to participate in activities and socialize; medical responsibilities conflicting with the nurturing parental role; impeding ability to work; and measuring and addressing life participation in parents of children with CKD.
CONCLUSION: Managing parental and disease-related responsibilities can impair life participation in parents of children with CKD, particularly in the areas of work and social activities. Strategies to identify and address parental life participation appear to be needed, which may include interventions to alleviate caregiver burden and distress.