Themes in daily life of adolescents and young adults with congenital bleeding disorders: a qualitative study

Limperg, Perrine F.; Peters, Marjolein; Gibbons, Elizabeth; Coppens, Michiel; Valk, C.; Grootenhuis, Martha A.; Haverman, Lotte

doi:10.1111/hae.12961

Cited by 14 publications

(33 citation statements)

References 10 publications

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

Section: Resultsmentioning

confidence: 99%

“…; Limperg et al. ; von der Lippe et al. ), worries about finding an accepting and understanding life partner or perceiving the medical condition as a limit to other relationships (Vegni et al.…”

Section: Resultsmentioning

confidence: 99%

“…; Limperg et al. ; von der Lippe et al. ) or the perceived experience of growing up as different from others, even within one's own family (Palareti et al.…”

Section: Resultsmentioning

confidence: 99%

“…; Limperg et al. ), and through patient organizations and people with the same condition (Petersen ; Huyard ; Garrino et al. ).…”

Section: Resultsmentioning

confidence: 99%

“…Support from family was described as crucial, yet associated with a complicated process in the transition period from childhood to adolescence, when gaining independence from parents and taking self‐responsibility of treatment (Limperg et al. ). The loss of social support from family members who understood the treatment requirements of some medical conditions was described as challenging to some young adults when reaching adulthood (Diesen 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

231

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

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

“…; Limperg et al. ; von der Lippe et al. ) or the perceived experience of growing up as different from others, even within one's own family (Palareti et al.…”

Section: Resultsmentioning

confidence: 99%

“…; Limperg et al. ), and through patient organizations and people with the same condition (Petersen ; Huyard ; Garrino et al. ).…”

Section: Resultsmentioning

confidence: 99%

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

231

223

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Balance, falls, and exercise: Beliefs and experiences in people with hemophilia: A qualitative study

Flaherty

Schoeppe

Kruse‐Jarres

et al. 2018

Research and Practice in Thrombosis and Haemostasis

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Essentials Exploring exercise beliefs in people with hemophilia may improve efforts at fall prevention.Semi‐structured interviews of adults with hemophilia.Subjects expressed concerns regarding balance, falling, pain, and risks and benefits of exercise.Individualized treatment based on patient beliefs may facilitate exercise and fall prevention. BackgroundPrior research has established that falls are commonplace in adults with hemophilia, and advises that physical therapy and exercise are successful in fall prevention. Recognizing obstacles and catalysts to physical therapy and exercise in people with hemophilia may augment the efficacy of efforts to prevent falls in this population.ObjectivesTo learn about the experiences and ideas of patients with hemophilia, especially associated with balance, falls, and exercise.MethodsSemi‐structured interviews with 14 adult patients with hemophilia were performed. The interviews were coded for themes founded on the study aims.ResultsMost subjects described difficulty with balance, often ascribed to joint problems. They believed that staying strong and fit could positively influence balance, but expressed concerns and fear related to falling. Those who exercised regularly did not view exercise as hazardous, while those who did not dependably exercise articulated worry that dangers of exercise may offset the benefits. The most common obstacle to exercise was pain and having someone to exercise with was often described as an enabler. Barriers to partaking in physical therapy included weak proof of its success and distrust in the therapist. Positive physical therapy experiences in the past and the connection with the therapist were reported as facilitators.ConclusionsPeople with hemophilia describe some attitudes and experiences that are unique to hemophilia while others are found in the general population. Attending to fear, pain, and support for interventions, while encouraging a robust therapeutic alliance and a plan for routine exercise may aid fall prevention behaviors.

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Health-related quality of life, developmental milestones, and self-esteem in young adults with bleeding disorders

et al. 2017

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BackgroundThe treatment of bleeding disorders improved in the last decades. However, the effect of growing up with bleeding disorders on developmental, emotional, and social aspects is understudied. Therefore, this study assesses HRQOL, developmental milestones, and self-esteem in Dutch young adults (YA) with bleeding disorders compared to peers.MethodsNinety-five YA (18–30 years) with bleeding disorders (78 men; mean 24.7 years, SD 3.5) and 17 women (mean 25.1 years, SD 3.8) participated and completed the Pediatric Quality of Life Inventory Young Adult version, the Course of Life Questionnaire, and the Rosenberg Self-Esteem Scale. Differences between patients with bleeding disorders and their peers, and between hemophilia severity groups, were tested using Mann–Whitney U tests.ResultsYA men with bleeding disorders report a slightly lower HRQOL on the total scale, physical functioning, and school/work functioning in comparison to healthy peers (small effect sizes). YA men with severe hemophilia report more problems on the physical functioning scale than non-severe hemophilia. YA men with bleeding disorders achieved more psychosexual developmental milestones than peers, but show a delay in ‘paid jobs, during middle and/or high school.’ A somewhat lower self-esteem was found in YA men with bleeding disorders in comparison to peers (small effect size). For YA women with bleeding disorders, no differences were found on any of the outcomes in comparison to peers.ConclusionThis study demonstrates some impairments in HRQOL and self-esteem in YA men with bleeding disorders. By monitoring HRQOL, problems can be identified early, especially with regard to their physical and professional/school functioning.

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Themes in daily life of adolescents and young adults with congenital bleeding disorders: a qualitative study

Cited by 14 publications

References 10 publications

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

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

Balance, falls, and exercise: Beliefs and experiences in people with hemophilia: A qualitative study

Health-related quality of life, developmental milestones, and self-esteem in young adults with bleeding disorders

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