Special Issue: Psychosocial Considerations for Children and Adolescents Living with a Rare Disease

Maureen E Lyon, Lori Wiener, Maureen E Lyon, Lori Wiener

Abstract

This Special Issue of the journal Children constitutes an opportune moment to reflect on the psychosocial needs of children living with rare diseases and of their families [...].

Conflict of interest statement

The authors declare no conflicts of interest.

References

    1. Belzer L.T., Wright S.M., Goodwin E.J., Singh M.N., Carter B.S. Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action. Children. 2022;9:933. doi: 10.3390/children9070933.
    1. Scharping M., Brennenstuhl H., Garbade S.F., Wild B., Posset R., Zielonka M., Kölker S., Haun M.W., Opladen T. Unmet Needs of Parents of Children with Urea Cycle Disorders. Children. 2022;9:712. doi: 10.3390/children9050712.
    1. Lockridge R., Bedoya S., Allen T., Widemann B.C., Akshintala S., Glod J., Wiener L. Psychosocial Characteristics and Experiences in Patients with Multiple Endocrine Neoplasia Type 2 (MEN2) and Medullary Thyroid Carcinoma (MTC) Children. 2022;9:774. doi: 10.3390/children9060774.
    1. Butti N., Castagna A., Montirosso R. Psychosocial Difficulties in Preschool-Age Children with Beckwith–Wiedemann Syndrome: An Exploratory Study. Children. 2022;9:551. doi: 10.3390/children9040551.
    1. Chu S.-Y., Wen C.-C., Weng C.-Y. Gender Differences in Caring for Children with Genetic or Rare Diseases: A Mixed-Methods Study. Children. 2022;9:627. doi: 10.3390/children9050627.
    1. McCarthy S.R., Golembiewski E.H., Gravholt D.L., Clark J.E., Clark J., Fischer C., Mulholland H., Babcock K., Montori V.M., Jones A. Documentation of Psychosocial Distress and Its Antecedents in Children with Rare or Life-Limiting Chronic Conditions. Children. 2022;9:664. doi: 10.3390/children9050664.
    1. Wawrzynski S.E., Alderfer M.A., Kvistad W., Linder L., Reblin M., Guo J.-W., Cloyes K.G. The Social Networks and Social Support of Siblings of Children with Cancer. Children. 2022;9:113. doi: 10.3390/children9010113.
    1. Kreicbergs U., Nilsson S., Jenholt Nolbris M., Lövgren M. Using Communication Tools to Explore Young Siblings’ Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs. Children. 2022;9:641. doi: 10.3390/children9050641.
    1. Aoun S.M., Stegmann R., Deleuil R., Momber S., Cuddeford L., Phillips M.B., Lyon M.E., Gill F.J. “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care. Children. 2022;9:322. doi: 10.3390/children9030322.
    1. Fratantoni K., Livingston J., Schellinger S.E., Aoun S.M., Lyon M.E. Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases. Children. 2022;9:445. doi: 10.3390/children9030445.
    1. Brunetta J., Fahner J., Legemaat M., van den Bergh E., Krommenhoek K., Prinsze K., Kars M., Michiels E. Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review. Children. 2022;9:830. doi: 10.3390/children9060830.
    1. Allen T., Reda S., Martin S., Long P., Franklin A., Bedoya S.Z., Wiener L., Wolters P.L. The Needs of Adolescents and Young Adults with Chronic Illness: Results of a Quality Improvement Survey. Children. 2022;9:500. doi: 10.3390/children9040500.
    1. Sandquist M., Davenport T., Monaco J., Lyon M.E. The Transition to Adulthood for Youth Living with Rare Diseases. Children. 2022;9:710. doi: 10.3390/children9050710.

Source: PubMed

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