A qualitative study identifying the knowledge, attitudes and behaviours of young men with mild haemophilia

Nilson, JoAnn; Schachter, Candice L.; Mulder, Kathy; Hahn, Matthew; Steele, Marlee R.; Hilliard, Pam; Jarock, C.

doi:10.1111/j.1365-2516.2011.02714.x

Cited by 30 publications

(47 citation statements)

References 10 publications

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“…Listening attentively to understand patient and family perspectives was strongly emphasised as valuable, facilitating communication and enhancing treatment effectiveness [223235434449545869]. Understanding the patient’s experience of disease severity could also help to ensure that therapeutic messages were not seen as catastrophizing or exaggerated [55]. …”

Section: Resultsmentioning

confidence: 99%

“…Conversely, practitioners who did not listen to or consider the concerns and opinions of patients and families could discourage them from attending appointments [225562]. Particularly effective were practitioners who created a relaxed and safe atmosphere, in which both parties could share personal stories, concerns, and experiences [21224952].…”

Section: Resultsmentioning

confidence: 99%

“…This could lead to denial of the disease and its effects [5562], to re-establish a personal sense of being “normal” [55]. Practitioners’ failures to engage with these emotions could get in the way of the patient engaging with them [2458].…”

Section: Resultsmentioning

confidence: 99%

“…Young people developed expertise in their own care that sometimes superseded that of the medical team [5558]. Peers who had the same health conditions, and therefore similar expertise, could be valuable emotional supports [2124425862] or mentors [5867], and could act as guides in ways that practitioners could not.…”

Section: Resultsmentioning

confidence: 99%

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The Nature of Patient- and Family-Centred Care for Young Adults Living with Chronic Disease and their Family Members: A Systematic Review

Allen

Scarinci

Hickson

2018

International Journal of Integrated Care

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Background and Aim:The published literature addressing the nature of patient- and family-centred care (PFCC) among young adults (16–25 years old) living with chronic disease and their family members is diverse. The aim of this systematic review was to collect and interpretatively synthesise this literature to generate a conceptual understanding of PFCC in this age group.Method:From an initial pool of 10,615 papers, 51 were systematically identified as relevant to the research question and appraised using the Critical Appraisal Skills Programme tools. A total of 24 papers passed the quality appraisal and proceeded to a qualitative meta-synthesis.Results:The qualitative meta-synthesis revealed three major elements of PFCC relevant to young adults living with chronic disease and their family members: (1) patients and practitioners felt able to engage with each other on an emotional and social level; (2) patients and families felt empowered to be part of the care process; and (3) patients and families experienced care as effective at addressing their individual needs.Conclusion:There is agreement among young adult patients and families about what constitutes PFCC in a chronic disease setting, independent of the aetiology of the pathological process. Patients and families also have strong feelings about how practitioners can achieve PFCC in practice. These findings have implications for the delivery of health services to young adults living with chronic disease and their family members.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

The Nature of Patient- and Family-Centred Care for Young Adults Living with Chronic Disease and their Family Members: A Systematic Review

Allen

Scarinci

Hickson

2018

International Journal of Integrated Care

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“…Our research included young men 18-30(5) years old; therefore, the evidence on these knowledge gaps included this group [1,2]. The App addresses the issues specifically for this age group.…”

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confidence: 99%

Mobile Aid for Haemophilia Injury Recognition

Lomotey¹,

Mulder²,

Nilson³

et al. 2014

BER

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Abstract-Haemophilia is a bleeding condition that prevents blood clot during injuries. Previous studies suggest that some persons with the condition often do not report the problem and in some cases, there is the need to take certain critical actions when injuries occur. This has created the need to investigate best approaches that can encourage people with the condition to seek medical help or in the case where the injury is minor, users can assess the injury themselves by following some guidelines. To this effect, our ongoing project seeks to explore the issue through the adoption of mobile computing technology. Thus, an App is developed called, Haemophilia Injury Recognition Tool (HIRT?), which provides the users (especially young men) with a set of instructions on how to assess minor injuries. In cases where the injury is severe, the user is asked to go to the emergency room or contact the nearest Haemophilia Treatment Center which is provided in the App. The paper discusses the architectural flow of the App as well as the user feedback. Overall, the initial group of people who tested the App found it very useful in terms of its content, reminders, and clarity of steps.

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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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A qualitative study identifying the knowledge, attitudes and behaviours of young men with mild haemophilia

Cited by 30 publications

References 10 publications

The Nature of Patient- and Family-Centred Care for Young Adults Living with Chronic Disease and their Family Members: A Systematic Review

The Nature of Patient- and Family-Centred Care for Young Adults Living with Chronic Disease and their Family Members: A Systematic Review

Mobile Aid for Haemophilia Injury Recognition

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

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