Table 2.
Living with a rare disorder: Themes and subthemes presented in the included studies
| Reference | Consequences | Social aspects | Health care experiences | |||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Constraints and limitations | Psychol. impact | Coping strategies | What, how, and when to tell others | Stigma | Sameness and difference | Social support | Lack of knowledge | Contact with health prof. | Expert patients | |
| Barlow et al. (2007) | X | X | X | X | X | |||||
| Brodin et al. (2015) | X | X | X | X | X | X | X | |||
| Budych et al. (2012) | X | X | X | |||||||
| Caputo (2014) | X | X | X | |||||||
| Diesen (2016) | X | X | X | X | ||||||
| Diesen et al. (2015) | X | X | X | X | X | X | X | X | ||
| Dures et al. (2011) | X | X | X | X | X | X | X | X | X | |
| Frank et al. (2007) | X | X | X | X | X | X | ||||
| Garrino et al. (2015) | X | X | X | X | X | X | X | |||
| Gibas et al. (2008) | X | X | X | X | X | |||||
| Grut and Kvam (2013) | X | X | X | X | X | X | ||||
| Huyard 2009; | X | X | X | |||||||
| Jaeger et al. (2015) | X | X | X | X | X | X | X | |||
| Kesselheim et al. (2015) | X | X | X | X | X | |||||
| Limperg et al. (2016) | X | X | X | X | X | |||||
| Nilson et al. (2012) | X | X | ||||||||
| Palareti et al. (2015) | X | X | X | X | X | X | ||||
| Petersen (2006) | X | X | X | X | X | X | X | X | ||
| Smith et al. (2014) | X | X | X | X | X | |||||
| Vegni et al. (2010) | X | X | X | X | X | X | ||||
| von der Lippe et al. (2016) | X | X | X | X | X | X | X | |||