Cargando…

Parental coping with uncertainties along the severe combined immunodeficiency journey

BACKGROUND: Severe combined immunodeficiency (SCID) is a group of rare genetic disorders that cause disruption in immune system functioning. Parents of children with SCID experience many uncertainties related to their child’s diagnosis, treatment, recovery, and quality of life. To fully understand p...

Descripción completa

Detalles Bibliográficos
Autores principales:	Kutsa, Oksana, Andrews, Sara M., Mallonee, Erin, Gwaltney, Angela, Creamer, Alissa, Han, Paul K. J., Raspa, Melissa, Biesecker, Barbara B.
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	BioMed Central 2022
Materias:	Research
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9615184/ https://www.ncbi.nlm.nih.gov/pubmed/36303152 http://dx.doi.org/10.1186/s13023-022-02554-9

Ejemplares similares

Uncertainties experienced by parents of children diagnosed with severe combined immunodeficiency through newborn screening
por: Raspa, Melissa, et al.
Publicado: (2023)

Severe Combined Immunodeficiency: Knowledge and Information Needs Among Healthcare Providers
por: Kutsa, Oksana, et al.
Publicado: (2022)

Information and Emotional Support Needs of Families Whose Infant Was Diagnosed With SCID Through Newborn Screening
por: Raspa, Melissa, et al.
Publicado: (2020)

Expert Evaluation of Strategies to Modernize Newborn Screening in the United States
por: Bailey, Donald B., et al.
Publicado: (2021)

Metabolism along the life journey of T cells
por: Peng, Min, et al.
Publicado: (2023)

Psychological Journey and Coping Styles of Parents of Infants With Biliary Atresia: A Single-Center Qualitative Study
por: Zhang, Cheng-Lu, et al.
Publicado: (2023)

A Developmental Journey and Lessons Learned Along the Way
por: Rossant, Janet
Publicado: (2010)

A Taxonomy of Medical Uncertainties in Clinical Genome Sequencing
por: Han, Paul K. J., et al.
Publicado: (2017)

How do research participants perceive “uncertainty” in genomic sequencing?
por: Biesecker, Barbara B, et al.
Publicado: (2014)

A Journey towards Resilience: Coping Strategies Adopted by Parents with Children Having Autism Spectrum Disorder in Northeast Malaysia
por: Yaacob, Wan Natrah Wan, et al.
Publicado: (2022)

Adult children of parents with mental illness: parenting journeys
por: Murphy, Gillian, et al.
Publicado: (2018)

My Life in Leadership: The Journey and Lessons Learned Along the Way
por: Hesselbein, Frances
Publicado: (2011)

P-018: MILESTONES ALONG MY PERSONAL JOURNEY WITH HYDROXYUREA
por: A., SHAKIR
Publicado: (2022)

Returning to work: The cancer survivor’s transformational journey of adjustment and coping
por: Barnard, Antoni, et al.
Publicado: (2016)

How to cope with uncertainty in COVID-19 times
por: Raab, Markus
Publicado: (2021)

2015-another step along the road in a 40-year journey...
por: Souza, Rogério
Publicado: (2015)

Delay Along the Care Seeking Journey of Patients with Microbial Keratitis in Uganda
por: Arunga, Simon, et al.
Publicado: (2019)

Three Medicolegal Cases of Searching for the Stone: Lessons Learned Along the Journey
por: Jacobson, Ashley A., et al.
Publicado: (2020)

Elderly Cancer Survivors Reflect on Coping Strategies During the Cancer Journey
por: Kahana, Eva, et al.
Publicado: (2016)

Translating Geriatric Psychiatry Research into Practice: Coping with Uncertainty
por: Rapoport, Mark J.
Publicado: (2012)

Coping with uncertainty during healthcare-seeking in Lao PDR
por: Alvesson, Helle M, et al.
Publicado: (2013)

Characterization of Courtesy Stigma Perceived by Parents of Overweight Children with Bardet-Biedl Syndrome
por: Hamlington, Barbara, et al.
Publicado: (2015)

Parental experiences with their child’s eating disorder treatment journey
por: Coelho, Jennifer S., et al.
Publicado: (2021)

Coping With Uncertainty: Use of Contemplative Practices Amid a Pandemic
por: Lekhak, Nirmala, et al.
Publicado: (2021)

Coping with uncertainty in everyday situations (CUES©) to address intolerance of uncertainty in autistic children: an intervention feasibility trial
por: Rodgers, Jacqui, et al.
Publicado: (2022)

Parental experiences of uncertainty following an abnormal fetal anomaly scan: Insights using Han’s taxonomy of uncertainty
por: Hammond, Jennifer, et al.
Publicado: (2020)

Delay along the care-seeking journey of patients with ocular surface squamous neoplasia in Kenya
por: Gichuhi, Stephen, et al.
Publicado: (2017)

Understanding Barriers Along the Patient Journey in Alzheimer’s Disease Using Social Media Data
por: Tahami Monfared, Amir Abbas, et al.
Publicado: (2023)

Parenting Styles and Child’s Well-Being: The Mediating Role of the Perceived Parental Stress
por: Delvecchio, Elisa, et al.
Publicado: (2020)

Correction to: Parental experiences with their child’s eating disorder treatment journey
por: Coelho, Jennifer S., et al.
Publicado: (2022)

Human-Aware Collaborative Robots in the Wild: Coping with Uncertainty in Activity Recognition
por: Yalçinkaya, Beril, et al.
Publicado: (2023)

When Advisors’ True Intentions Are in Question. How Do Bank Customers Cope with Uncertainty in Financial Consultancies?
por: Mackinger, Barbara, et al.
Publicado: (2017)

Cancer Patient Experience of Uncertainty While Waiting for Genome Sequencing Results
por: Bartley, Nicci, et al.
Publicado: (2021)

Parents With Mental Illness: Parental Coping Behavior and Its Association With Children's Mental Health
por: Sell, Marlit, et al.
Publicado: (2021)

Making Memories of Stressful Events: A Journey Along Epigenetic, Gene Transcription, and Signaling Pathways
por: Reul, Johannes M. H. M.
Publicado: (2014)

Cancer Immunotherapy with CAR T Cells: Well-trodden Paths and Journey Along Lesser-known Routes
por: Smole, Anze
Publicado: (2022)

Coping with Uncertainty in Everyday Situations (CUES©) to address intolerance of uncertainty in autistic children: study protocol for an intervention feasibility trial
por: Rodgers, Jacqui, et al.
Publicado: (2019)

Adaptation to bipolar disorder and perceived risk to children: a survey of parents with bipolar disorder
por: Peay, Holly L, et al.
Publicado: (2013)

The cycle of uncertainty: parents’ experiences of childhood epilepsy
por: Webster, Michelle
Publicado: (2018)

Uncertainty in illness and coping styles: Moderating and mediating effects of resilience in stroke patients
por: Han, Zi-Ting, et al.
Publicado: (2021)

Cannot write session to /tmp/vufind_sessions/sess_2j2dabqpk2bmm3sldnchb6dni8