A total of 26 articles (research, review, or opinion) were included in our review. Carers of people with RIDs report higher burden/higher unmet needs than the general population and have a multitude of unmet needs. The burden/supportive care needs identified include: physical symptoms/burden, social/interpersonal, and psychological. Themes unique to caring for a person with RIDs include: non-disclosure of diagnosis, stigma/embarrassment, lack of support, and sacrifice of personal needs. Themes also exist within the three domains, including: negative impact on work and finances, burden-related strain, and impact on personal relationships.
Carers of people living with RIDs have higher burden/unmet needs than the general population and have unmet needs in a multitude of areas. These needs present a barrier to carers seeking help in accessing services for themselves, resulting in greater burden and isolation for these carers. Current models of care for carers of people with RIDs identify the needs of parents of children with rare diseases. However, this review indicates that these models are lacking and that there is a need to develop models specific to carers of people living with RIDs. This review also identified unique supportive care needs of carers of people with RIDs that can be used to inform interventions aimed at supporting this population.
Our systematic review found 26 articles that met our inclusion criteria. Articles were excluded if they were published between 2000 and 2015 (n = 12), did not include a stakeholder perspective (n = 3), did not focus on an RID (n = 3), did not involve a comparison group (n = 1), or were not written in English (n = 3). Our thematic analysis revealed five main themes unique to RID carers: genetics, diagnosis, impact of diagnosis, psychological impact, and medical impact. The underlying structure of these themes related to the overarching conceptual model, the RID Caregiver's Experience/Conceptual Model.
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One of the drawbacks to this approach was that we needed to recompile every time we made even a small change to the code. This slowed everything else we were doing down and because we couldn't always have someone waiting for the application to finish building. 827ec27edc