Cargando…

A systematic review and integrative sequential explanatory narrative synthesis: The psychosocial impact of parenting a child with a lysosomal storage disorder

Lysosomal storage disorders are rare multiorgan, degenerative conditions requiring invasive treatment. Rare disorders pose unique challenges; therefore, exploring their impact is crucial for understanding family needs. This novel review aimed to understand the psychosocial outcomes for parents of ch...

Descripción completa

Detalles Bibliográficos
Autores principales:	Hassall, Sadie, Smith, Debbie Michelle, Rust, Stewart, Wittkowski, Anja
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	John Wiley & Sons, Inc. 2022
Materias:	Review Articles
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9305282/ https://www.ncbi.nlm.nih.gov/pubmed/35124835 http://dx.doi.org/10.1002/jimd.12482

Ejemplares similares

“Why them, why me, why us?” The experiences of parents of children with lysosomal acid lipase deficiency: an interpretative phenomenological analysis study
por: Hassall, S., et al.
Publicado: (2022)

Parenting a Child with Phenylketonuria (PKU): an Interpretative Phenomenological Analysis (IPA) of the Experience of Parents
por: Carpenter, Katie, et al.
Publicado: (2018)

Implementation fidelity in a complex intervention promoting psychosocial well-being following stroke: an explanatory sequential mixed methods study
por: Bragstad, Line Kildal, et al.
Publicado: (2019)

Academic burnout in nursing students: An explanatory sequential design
por: Ghods, Ali Asghar, et al.
Publicado: (2022)

Does Engaging in a Group-Based Intervention Increase Parental Self-efficacy in Parents of Preschool Children? A Systematic Review of the Current Literature
por: Wittkowski, Anja, et al.
Publicado: (2016)

Parental decision-making following a prenatal diagnosis that is lethal, life-limiting, or has long term implications for the future child and family: a meta-synthesis of qualitative literature
por: Blakeley, Claire, et al.
Publicado: (2019)

Lysosomes and Lysosomal Storage Diseases
por: Noebels, Jeffrey L.
Publicado: (1981)

A self-contained and self-explanatory DNA storage system
por: Li, Min, et al.
Publicado: (2021)

The Role of Front-of-Package Nutrition Labels with and without Explanatory Videos on Parent and Child Food Choices
por: Graham, Dan J., et al.
Publicado: (2023)

Nurses’ Burden of Elimination Care: Sequential Explanatory Mixed-Methods Design
por: Jung, Se Young, et al.
Publicado: (2023)

Persuasive Features of Scientific Explanations: Explanatory Schemata of Physical and Psychosocial Phenomena
por: Schoenherr, Jordan Richard, et al.
Publicado: (2021)

Integrating Healthcare Services for Indigenous Australian Students at Boarding Schools: A Mixed-Methods Sequential Explanatory Study
por: McCalman, Janya, et al.
Publicado: (2020)

Fetal therapies and trials for lysosomal storage diseases: a survey of attitudes of parents and patients
por: Schwab, Marisa E., et al.
Publicado: (2022)

Narrative insight in psychosis: The relationship with spiritual and religious explanatory frameworks
por: Marriott, Michael R., et al.
Publicado: (2018)

Lysosomal storage disorders
por: Cabrera-Salazar, Mario A, et al.
Publicado: (2007)

Lysosomal storage diseases
por: Ferreira, Carlos R., et al.
Publicado: (2017)

Investigating and managing neonatal seizures in the UK: an explanatory sequential mixed methods approach
por: Gossling, Lucy, et al.
Publicado: (2020)

Navigating their child’s attachment-related difficulties: Parents’ journey from shame into awareness
por: Crompton, Chloe, et al.
Publicado: (2022)

Determinants of testing for HIV among young people in Uganda. A nested, explanatory-sequential study
por: Kalibbala, Dennis, et al.
Publicado: (2022)

Lysosomal storage disorders: The cellular impact of lysosomal dysfunction
por: Platt, Frances M., et al.
Publicado: (2012)

What helps and hinders doctors in engaging in continuous professional development? An explanatory sequential design
por: Yam, Carrie H. K., et al.
Publicado: (2020)

Clinical teachers as positive and negative role models: an explanatory sequential mixed method design
por: Bazrafkan, Leila, et al.
Publicado: (2019)

Explanatory
Publicado: (1868)

Explanatory
Publicado: (1889)

Explanatory
Publicado: (1883)

Autophagy in lysosomal storage disorders
por: Lieberman, Andrew P., et al.
Publicado: (2012)

Biomarkers in Lysosomal Storage Diseases
por: Bobillo Lobato, Joaquin, et al.
Publicado: (2016)

Lysosomal Storage Disorders and Malignancy
por: Pastores, Gregory M., et al.
Publicado: (2017)

The Facilitators and Barriers to Nurses’ Participation in Continuing Education Programs: A Mixed Method Explanatory Sequential Study
por: Shahhosseini, Zohreh, et al.
Publicado: (2015)

A sequential explanatory study of the employment experiences of population-based breast, colorectal, and prostate cancer survivors
por: Adler Jaffe, Shoshana, et al.
Publicado: (2021)

Navigating into the unknown: exploring the experience of exposure to prehospital emergency stressors: a sequential explanatory mixed-methods
por: Afshari, Ali, et al.
Publicado: (2023)

Parenting interventions to support parent/child attachment and psychosocial adjustment in foster and adoptive parents and children: A systematic review
por: Dalgaard, Nina T., et al.
Publicado: (2022)

Predictive Psychosocial Factors of Child-to-Parent Violence in a Sample of Mexican Adolescents
por: Suárez-Relinque, Cristian, et al.
Publicado: (2020)

Explanatory model of the psychosocial variables related to the social acceptance of a uranium mine project in northwest Spain
por: Sánchez-Tabernero, Gonzalo, et al.
Publicado: (2023)

Patient experience and satisfaction with symptomatic faecal immunochemical testing: an explanatory sequential mixed-methods evaluation
por: Gil, Natalie, et al.
Publicado: (2023)

The Role of Spirituality in Pain Experiences among Adults with Cancer: An Explanatory Sequential Mixed Methods Study
por: Miller, Megan, et al.
Publicado: (2023)

Netherton syndrome; neuropsychological and psychosocial functioning of child and adult patients and their parents
por: Versteegh, Josette JWM, et al.
Publicado: (2018)

PROTOCOL: Parenting interventions to support parent/child attachment and psychosocial adjustment in foster and adoptive parents and children: A systematic review
por: Dalgaard, Nina Thorup, et al.
Publicado: (2020)

When do parents and child health professionals agree on child’s psychosocial problems? Cross-sectional study on parent–child health professional dyads
por: Crone, Mathilde R., et al.
Publicado: (2016)

Involving members of vulnerable populations in the development of patient decision aids: a mixed methods sequential explanatory study
por: Dugas, Michèle, et al.
Publicado: (2017)

Cannot write session to /tmp/vufind_sessions/sess_hpkuoggi033f1f3gvfb79iu8cf