Shared topics on the experience of people with haemophilia living in the UK and the USA and the influence of individual and contextual variables: Results from the HERO qualitative study

Palareti, Laura; Potì, Silvia; Cassis, F.; Emiliani, Francesca; Matino, Davide; Iorio, Alfonso

doi:10.3402/qhw.v10.28915

Cited by 20 publications

(51 citation statements)

References 28 publications

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“…; Palareti et al. ; Limperg et al. ) or difficulties with sleep, fatigue, tiredness, and exhaustion (Petersen ; Jaeger et al.…”

Section: Resultsmentioning

confidence: 99%

“…; Palareti et al. ), creating social attention and visibility (Diesen et al. ), restraints in terms of social and physical activities (Petersen ; Frank et al.…”

Section: Resultsmentioning

confidence: 99%

“…; Palareti et al. ), anxiety around planning children (Dures et al. ), and the constant need to manage and tailor the consequences of the rare condition with everyday life (Vegni et al.…”

Section: Resultsmentioning

confidence: 99%

“…; Palareti et al. ), for example, due to loneliness (Dures et al. ), lack of social support (Kesselheim et al.…”

Section: Resultsmentioning

confidence: 99%

“…Other aspects of emotional distress were feelings of fear, anger, blame, and loss (Palareti et al. ).…”

Section: Resultsmentioning

confidence: 99%

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Living with a rare disorder: a systematic review of the qualitative literature

Lippe

Diesen

Feragen

2017

Molec Gen & Gen Med

229

223

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BackgroundIndividuals with rare diseases may face challenges that are different from those experienced in more common medical conditions. A wide range of different rare conditions has resulted in a myriad of studies investigating the specificities of the diagnosis in focus. The shared psychological experiences of individuals with a rare condition, however, have not been reviewed systematically.MethodsWe performed a systematic review, including qualitative studies on adults, published between 2000 and 2016. Papers including more than one rare genetic or nongenetic diagnosis were included. Studies based on single diagnoses were excluded except for four specific conditions: hemophilia (bleeding disorder), phenylketonuria (metabolic disorder), Fabry disease (lysosomal storage disorder), and epidermolysis bullosa (skin disorder).ResultsThe review identified 21 studies. Findings were synthesized and categorized according to three main themes: (1) Consequences of living with a rare disorder, (2) Social aspects of living with a rare disorder, and (3) Experiences with the health care system. Findings point to several unique challenges, such as the psychological, medical, and social consequences of a lack of knowledge about the condition in health care and social settings.ConclusionThe findings highlight the need for more research on the shared psychological and social impact of living with a rare diagnosis across conditions, in order to identify risk factors and inform clinical practice.

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“…; Palareti et al. ; Limperg et al. ) or difficulties with sleep, fatigue, tiredness, and exhaustion (Petersen ; Jaeger et al.…”

Section: Resultsmentioning

confidence: 99%

“…; Palareti et al. ), creating social attention and visibility (Diesen et al. ), restraints in terms of social and physical activities (Petersen ; Frank et al.…”

Section: Resultsmentioning

confidence: 99%

“…; Palareti et al. ), anxiety around planning children (Dures et al. ), and the constant need to manage and tailor the consequences of the rare condition with everyday life (Vegni et al.…”

Section: Resultsmentioning

confidence: 99%

“…; Palareti et al. ), for example, due to loneliness (Dures et al. ), lack of social support (Kesselheim et al.…”

Section: Resultsmentioning

confidence: 99%

“…Other aspects of emotional distress were feelings of fear, anger, blame, and loss (Palareti et al. ).…”

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations