Literature DB >> 33799499

An Integrative Review Exploring Psycho-Social Impacts and Therapeutic Interventions for Parent Caregivers of Young People Living with Duchenne's Muscular Dystrophy.

Debra Porteous1, Barbara Davies1, Christine English1, Joanne Atkinson1.   

Abstract

The purpose of this integrative review was to explore psycho-social impacts and therapeutic interventions for parent caregivers of young people living with Duchenne's Muscular Dystrophy (DMD). Electronic databases were searched for research publications between 2010 and 2020. This included Medline, CINAHL, PsycINFO, ERIC, ERC, and AMED. Four central themes emerged: Living with DMD; Knowing and telling; Transitioning; and Building resilience. The impact on parents caring for a child with DMD affected all aspects of their lives, changed over time, and had identifiable peak stress points. Unmet parental information and support needs left parents struggling in their role. Transition required changes to parenting behaviors and required adaptation and resilience. It is proposed that future investment should focus on anticipating family need, targeting intervention cognizant of predictable stress points and building resilience through social community. Parents may then be better positioned to support their child in looking forward.

Entities:  

Keywords:  Duchenne’s muscular dystrophy; age 13–19; family burden/care burden; muscular dystrophy; parents caregivers; psycho-social needs

Year:  2021        PMID: 33799499      PMCID: PMC7999999          DOI: 10.3390/children8030212

Source DB:  PubMed          Journal:  Children (Basel)        ISSN: 2227-9067


  39 in total

1.  Subjective caregiver burden of parents of adults with Duchenne muscular dystrophy.

Authors:  Robert F Pangalila; Geertrudis A M van den Bos; Henk J Stam; N Job A van Exel; Werner B F Brouwer; Marij E Roebroeck
Journal:  Disabil Rehabil       Date:  2011-12-09       Impact factor: 3.033

2.  An exploratory qualitative investigation of psychosocial determinants of parental decisions to support sport participation for youth with a mobility impairment.

Authors:  Celina H Shirazipour; Amy E Latimer-Cheung; Kelly P Arbour-Nicitopoulos
Journal:  Res Dev Disabil       Date:  2015-08-27

3.  A matter of definition--key elements identified in a discourse analysis of definitions of palliative care.

Authors:  T Pastrana; S Jünger; C Ostgathe; F Elsner; L Radbruch
Journal:  Palliat Med       Date:  2008-04       Impact factor: 4.762

4.  Sleep quality of mother-caregivers of Duchenne muscular dystrophy patients.

Authors:  Karen T Nozoe; Daniel N Polesel; Gustavo A Moreira; Gabriel N Pires; Ricardo T Akamine; Sergio Tufik; Monica L Andersen
Journal:  Sleep Breath       Date:  2015-05-24       Impact factor: 2.816

5.  Using the grey literature to enhance research and practice in continuing education for health professionals.

Authors:  Curtis A Olson
Journal:  J Contin Educ Health Prof       Date:  2013       Impact factor: 1.355

6.  Health status of boys with Duchenne muscular dystrophy: a parent's perspective.

Authors:  Paula Bray; Anita C Bundy; Monique M Ryan; Kathryn N North; Joshua Burns
Journal:  J Paediatr Child Health       Date:  2011-03-10       Impact factor: 1.954

7.  Impacts for Children Living with Genetic Muscle Disorders and their Parents - Findings from a Population-Based Study.

Authors:  Kelly M Jones; Gina O'Grady; Miriam J Rodrigues; Anna Ranta; Richard H Roxburgh; Donald R Love; Alice Theadom
Journal:  J Neuromuscul Dis       Date:  2018

8.  Insights from parents of a child with leukaemia and healthcare professionals about sharing illness and treatment information: A qualitative research study.

Authors:  Faith Gibson; Stephanie Kumpunen; Gemma Bryan; Liz Forbat
Journal:  Int J Nurs Stud       Date:  2018-04-13       Impact factor: 5.837

Review 9.  Integrated care of muscular dystrophies in Italy. Part 2. Psychological treatments, social and welfare support, and financial costs.

Authors:  Lorenza Magliano; Marianna Scutifero; Melania Patalano; Alessandra Sagliocchi; Antonella Zaccaro; Federica Civati; Erika Brighina; Gianluca Vita; Sonia Messina; Maria Sframeli; Maria Elena Lombardo; Roberta Scalise; Giulia Colia; Maria Catteruccia; Angela Berardinelli; Maria Chiara Motta; Alessandra Gaiani; Claudio Semplicini; Luca Bello; Guja Astrea; Giulia Ricci; Maria Grazia D'Angelo; Giuseppe Vita; Marika Pane; Adele D'Amico; Umberto Balottin; Corrado Angelini; Roberta Battini; Luisa Politano
Journal:  Acta Myol       Date:  2017-06

10.  Residential immersive life skills programs for youth with disabilities: a case study of youth developmental trajectories of personal growth and caregiver perspectives.

Authors:  Shauna Kingsnorth; Alanna E F Rudzik; Gillian King; Amy C McPherson
Journal:  BMC Pediatr       Date:  2019-11-06       Impact factor: 2.125

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