Information and self-management needs of people living with bleeding disorders: a survey

Julie H. Barlow, Jacqueline Stapley, David R. Ellard, Mollie Gilchrist

    Research output: Contribution to journalArticle

    20 Citations (Scopus)

    Abstract

    .  The aim of the study was to conduct a survey of information and self-management needs among members of the UK Haemophilia Society (HS). Of 1082 members mailed, 307 took part in the survey, the mean age was 52.4 years (SD 14.8), 85% were male, 96% white and 66% were living with haemophilia A. 90% felt that there is a lack of understanding amongst the public regarding bleeding disorders, 76% felt that health professionals understood their health and information needs and 32% had experienced problems managing anxiety and or depression. Results suggest that there was a ‘stigma’ attached to having a bleeding disorder and almost half are very careful about informing others that they have a bleeding disorder. Self-efficacy was relatively high within the sample. Many respondents wanted to be kept informed about current research and the opportunity to participate in research. Women experienced a greater need for more information than men, particularly in the area of the ‘medical management’ and ‘emotional’ topics. Men appeared to need more information and or training on ‘physical’ aspects such as physiotherapy and joint replacement. The study provides an insight into the educational and self-management needs of those affected by bleeding disorders and highlights the importance of providing accessible information
    Original languageEnglish
    Pages (from-to)264-270
    JournalHaemophilia
    Volume13
    Issue number3
    DOIs
    Publication statusPublished - May 2007

    Fingerprint

    Information Management
    Self Care
    Hemorrhage
    Hemophilia A
    Replacement Arthroplasties
    Health
    Self Efficacy
    Research
    Anxiety
    Depression
    Surveys and Questionnaires

    Bibliographical note

    The full text of this item is not available from the repository.
    This is the pre-peer reviewed version of the following article:
    Barlow, J.H. , Stapley, J. , Ellard, D.R. and Gilchrist, M. (2007) Information and self-management needs of people living with bleeding disorders: a survey. Haemophilia, volume 13 (3): 264-270

    which has been published in final form at
    http://dx.doi.org/10.1111/j.1365-2516.2007.01444.x

    Keywords

    • Haemophilia
    • patient education
    • self-efficacy
    • stigma
    • well-being

    Cite this

    Information and self-management needs of people living with bleeding disorders: a survey. / Barlow, Julie H.; Stapley, Jacqueline; Ellard, David R.; Gilchrist, Mollie.

    In: Haemophilia, Vol. 13, No. 3, 05.2007, p. 264-270.

    Research output: Contribution to journalArticle

    Barlow, Julie H. ; Stapley, Jacqueline ; Ellard, David R. ; Gilchrist, Mollie. / Information and self-management needs of people living with bleeding disorders: a survey. In: Haemophilia. 2007 ; Vol. 13, No. 3. pp. 264-270.
    @article{56b05689f59e4fa89472bfb33ad5cdff,
    title = "Information and self-management needs of people living with bleeding disorders: a survey",
    abstract = ".  The aim of the study was to conduct a survey of information and self-management needs among members of the UK Haemophilia Society (HS). Of 1082 members mailed, 307 took part in the survey, the mean age was 52.4 years (SD 14.8), 85{\%} were male, 96{\%} white and 66{\%} were living with haemophilia A. 90{\%} felt that there is a lack of understanding amongst the public regarding bleeding disorders, 76{\%} felt that health professionals understood their health and information needs and 32{\%} had experienced problems managing anxiety and or depression. Results suggest that there was a ‘stigma’ attached to having a bleeding disorder and almost half are very careful about informing others that they have a bleeding disorder. Self-efficacy was relatively high within the sample. Many respondents wanted to be kept informed about current research and the opportunity to participate in research. Women experienced a greater need for more information than men, particularly in the area of the ‘medical management’ and ‘emotional’ topics. Men appeared to need more information and or training on ‘physical’ aspects such as physiotherapy and joint replacement. The study provides an insight into the educational and self-management needs of those affected by bleeding disorders and highlights the importance of providing accessible information",
    keywords = "Haemophilia, patient education, self-efficacy, stigma, well-being",
    author = "Barlow, {Julie H.} and Jacqueline Stapley and Ellard, {David R.} and Mollie Gilchrist",
    note = "The full text of this item is not available from the repository. This is the pre-peer reviewed version of the following article: Barlow, J.H. , Stapley, J. , Ellard, D.R. and Gilchrist, M. (2007) Information and self-management needs of people living with bleeding disorders: a survey. Haemophilia, volume 13 (3): 264-270 which has been published in final form at http://dx.doi.org/10.1111/j.1365-2516.2007.01444.x",
    year = "2007",
    month = "5",
    doi = "10.1111/j.1365-2516.2007.01444.x",
    language = "English",
    volume = "13",
    pages = "264--270",
    journal = "Haemophilia",
    issn = "1351-8216",
    publisher = "Wiley",
    number = "3",

    }

    TY - JOUR

    T1 - Information and self-management needs of people living with bleeding disorders: a survey

    AU - Barlow, Julie H.

    AU - Stapley, Jacqueline

    AU - Ellard, David R.

    AU - Gilchrist, Mollie

    N1 - The full text of this item is not available from the repository. This is the pre-peer reviewed version of the following article: Barlow, J.H. , Stapley, J. , Ellard, D.R. and Gilchrist, M. (2007) Information and self-management needs of people living with bleeding disorders: a survey. Haemophilia, volume 13 (3): 264-270 which has been published in final form at http://dx.doi.org/10.1111/j.1365-2516.2007.01444.x

    PY - 2007/5

    Y1 - 2007/5

    N2 - .  The aim of the study was to conduct a survey of information and self-management needs among members of the UK Haemophilia Society (HS). Of 1082 members mailed, 307 took part in the survey, the mean age was 52.4 years (SD 14.8), 85% were male, 96% white and 66% were living with haemophilia A. 90% felt that there is a lack of understanding amongst the public regarding bleeding disorders, 76% felt that health professionals understood their health and information needs and 32% had experienced problems managing anxiety and or depression. Results suggest that there was a ‘stigma’ attached to having a bleeding disorder and almost half are very careful about informing others that they have a bleeding disorder. Self-efficacy was relatively high within the sample. Many respondents wanted to be kept informed about current research and the opportunity to participate in research. Women experienced a greater need for more information than men, particularly in the area of the ‘medical management’ and ‘emotional’ topics. Men appeared to need more information and or training on ‘physical’ aspects such as physiotherapy and joint replacement. The study provides an insight into the educational and self-management needs of those affected by bleeding disorders and highlights the importance of providing accessible information

    AB - .  The aim of the study was to conduct a survey of information and self-management needs among members of the UK Haemophilia Society (HS). Of 1082 members mailed, 307 took part in the survey, the mean age was 52.4 years (SD 14.8), 85% were male, 96% white and 66% were living with haemophilia A. 90% felt that there is a lack of understanding amongst the public regarding bleeding disorders, 76% felt that health professionals understood their health and information needs and 32% had experienced problems managing anxiety and or depression. Results suggest that there was a ‘stigma’ attached to having a bleeding disorder and almost half are very careful about informing others that they have a bleeding disorder. Self-efficacy was relatively high within the sample. Many respondents wanted to be kept informed about current research and the opportunity to participate in research. Women experienced a greater need for more information than men, particularly in the area of the ‘medical management’ and ‘emotional’ topics. Men appeared to need more information and or training on ‘physical’ aspects such as physiotherapy and joint replacement. The study provides an insight into the educational and self-management needs of those affected by bleeding disorders and highlights the importance of providing accessible information

    KW - Haemophilia

    KW - patient education

    KW - self-efficacy

    KW - stigma

    KW - well-being

    U2 - 10.1111/j.1365-2516.2007.01444.x

    DO - 10.1111/j.1365-2516.2007.01444.x

    M3 - Article

    VL - 13

    SP - 264

    EP - 270

    JO - Haemophilia

    JF - Haemophilia

    SN - 1351-8216

    IS - 3

    ER -