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Table 2 Themes and subthemes presented in the included studies

From: Children with a rare congenital genetic disorder: a systematic review of parent experiences

Theme

Parents’ experiences with health care

Responsibilities and challenges

Factors promoting positive experiences in parents

Subtheme/

reference

Health care professio-nals’ lack of knowledge and experience with rare conditions

Lack of coordi-nated

health care

The many unknowns

Socity’s

lack of infor-mation and knowledge

Changes and adjust-ments in everyday life

(work, parent-hood,

social life)

Parents as coordinator, advocates and experts

Emotional reactions

Engaged and under-standing health care

professionals

Benefits of social support

Protective factors and coping mechanism

Baumbusch et al. [27]

x

x

x

 

x

x

x

 

x

 

Brewer et al. [28]

x

 

x

x

x

x

x

 

x

x

Bruns & Foerster [58]

    

x

 

x

 

x

 

Bruns & Schrey [59]

    

x

 

x

 

x

x

Cardinali et al. [29]

x

x

x

 

x

x

x

 

x

 

Currie & Szabo [30]

x

x

x

x

x

x

x

x

  

Currie & Szabo [31]

x

x

x

x

x

x

x

x

  

Currie & Szabo [49]

x

x

x

x

x

x

x

   

Feragen et al. [32]

x

 

x

 

x

x

x

  

x

Germeni et al. [50]

x

x

x

x

x

x

x

 

x

x

Gerstein et al. [33]

x

x

x

 

x

 

x

 

x

x

Gilmore et al. [34]

x

 

x

x

 

x

x

x

x

 

Glenn [35]

x

  

x

 

x

x

x

x

x

Gómez-Zúñiga et al. [36]

x

x

x

x

x

x

x

x

x

 

Griffith et al. [37]

x

x

x

x

x

x

x

x

 

x

Güeita-Rodriguez et al. [55]

x

x

 

x

x

x

x

 

x

 

Kleinendorst et al. [39]

x

x

x

x

x

x

x

 

x

 

Lim et al. [40]

x

x

x

  

x

x

 

x

 

Pousette Lundgren et al. [41]

x

 

x

x

x

x

x

x

x

x

Myrin-Westesson et al. [38]

x

 

x

x

x

x

x

  

x

Nag et al. [42]

x

 

x

x

 

x

x

x

x

x

Purcell et al. [56]

  

x

 

x

 

x

 

x

x

Ragusa et al. [54]

x

 

x

 

x

 

x

x

x

 

Smith et al. [43]

x

 

x

x

x

 

x

   

Somanadhan & Larkin [44]

x

x

x

x

x

x

x

x

x

x

Tikkanen, Peterson & Parsloe [57]

   

x

x

   

x

x

Trulsson & Klingberg [53]

x

x

x

x

x

x

x

x

 

x

Vitale [45]

x

x

 

x

x

x

x

 

x

x

von der Lippe et al. [51]

x

   

x

x

x

x

  

Weng et al. [46]

x

 

x

x

x

x

x

   

Wu et al. [47]

x

 

x

x

x

x

x

 

x

x

Yang et al. [52]

x

x

x

x

x

x

x

 

x

x

Zelihić et al. [48]

x

x

x

x

x

x

x

x

x

x

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Orphanet Journal of Rare Diseases

ISSN: 1750-1172