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  1. Article ; Online: Advocating for a patient- and family centered care approach to management of short bowel syndrome.

    Kumpf, Vanessa J / Neumann, Marie L / Kakani, Swapna R

    Nutrition in clinical practice : official publication of the American Society for Parenteral and Enteral Nutrition

    2023  Volume 38 Suppl 1, Page(s) S35–S45

    Abstract: Patient- and family centered care (PFCC) is a model of providing healthcare that incorporates the preferences, needs, and values of the patient and their family and is built on a solid partnership between the healthcare team and patient/family. This ... ...

    Abstract Patient- and family centered care (PFCC) is a model of providing healthcare that incorporates the preferences, needs, and values of the patient and their family and is built on a solid partnership between the healthcare team and patient/family. This partnership is critical in short bowel syndrome (SBS) management since the condition is rare, chronic, involves a heterogenous population, and calls for a personalized approach to care. Institutions can facilitate the practice of PFCC by supporting a teamwork approach to care, which, in the case of SBS, ideally involves a comprehensive intestinal rehabilitation program consisting of qualified healthcare practitioners who are supported with the necessary resources and budget. Clinicians can engage in a range of processes to center patients and families in the management of SBS, including fostering whole-person care, building partnerships with patients and families, cultivating communication, and providing information effectively. Empowering patients to self-manage important aspects of their condition is an important component of PFCC and can enhance coping to chronic disease. Therapy nonadherence represents a breakdown in the PFCC approach to care, especially when nonadherence is sustained, and the healthcare provider is intentionally misled. An individualized approach to care that incorporates patient/family priorities should ultimately enhance therapy adherence. Lastly, patients/families should play a central role in determining meaningful outcomes as it relates to PFCC and shaping the research that affects them. This review highlights needs and priorities of patients with SBS and their families and suggests ways to address gaps in existing care to improve outcomes.
    MeSH term(s) Humans ; Short Bowel Syndrome/therapy ; Delivery of Health Care ; Patient-Centered Care ; Health Facilities ; Health Personnel ; Family
    Language English
    Publishing date 2023-04-17
    Publishing country United States
    Document type Journal Article ; Review
    ZDB-ID 645074-x
    ISSN 1941-2452 ; 0884-5336
    ISSN (online) 1941-2452
    ISSN 0884-5336
    DOI 10.1002/ncp.10966
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    In stock of ZB MED Cologne/Königswinter

    Zs.A 2451: Show issues Location:
    Je nach Verfügbarkeit (siehe Angabe bei Bestand)
    bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular
    Jg. 1995 - 2021: Lesesall (2.OG)
    ab Jg. 2022: Lesesaal (EG)

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    This service is chargeable due to the Delivery terms set by subito. Orders including an article and supplementary material will be classified as separate orders. In these cases, fees will be demanded for each order.

  2. Article ; Online: Advocating for a patient‐ and family centered care approach to management of short bowel syndrome

    Kumpf, Vanessa J. / Neumann, Marie L. / Kakani, Swapna R.

    Nutrition in Clinical Practice. 2023 May, v. 38 Suppl S1 p.S35-S45

    2023  

    Abstract: Patient‐ and family centered care (PFCC) is a model of providing healthcare that incorporates the preferences, needs, and values of the patient and their family and is built on a solid partnership between the healthcare team and patient/family. This ... ...

    Abstract Patient‐ and family centered care (PFCC) is a model of providing healthcare that incorporates the preferences, needs, and values of the patient and their family and is built on a solid partnership between the healthcare team and patient/family. This partnership is critical in short bowel syndrome (SBS) management since the condition is rare, chronic, involves a heterogenous population, and calls for a personalized approach to care. Institutions can facilitate the practice of PFCC by supporting a teamwork approach to care, which, in the case of SBS, ideally involves a comprehensive intestinal rehabilitation program consisting of qualified healthcare practitioners who are supported with the necessary resources and budget. Clinicians can engage in a range of processes to center patients and families in the management of SBS, including fostering whole‐person care, building partnerships with patients and families, cultivating communication, and providing information effectively. Empowering patients to self‐manage important aspects of their condition is an important component of PFCC and can enhance coping to chronic disease. Therapy nonadherence represents a breakdown in the PFCC approach to care, especially when nonadherence is sustained, and the healthcare provider is intentionally misled. An individualized approach to care that incorporates patient/family priorities should ultimately enhance therapy adherence. Lastly, patients/families should play a central role in determining meaningful outcomes as it relates to PFCC and shaping the research that affects them. This review highlights needs and priorities of patients with SBS and their families and suggests ways to address gaps in existing care to improve outcomes.
    Keywords chronic diseases ; digestive system diseases ; health care workers ; health services ; intestines ; models ; nutrition ; patients ; teams ; therapeutics
    Language English
    Dates of publication 2023-05
    Size p. S35-S45.
    Publishing place John Wiley & Sons, Ltd
    Document type Article ; Online
    Note REVIEW
    ZDB-ID 645074-x
    ISSN 1941-2452 ; 0884-5336
    ISSN (online) 1941-2452
    ISSN 0884-5336
    DOI 10.1002/ncp.10966
    Database NAL-Catalogue (AGRICOLA)

    Full text online

    More links

    Kategorien

    In stock of ZB MED Cologne/Königswinter

    Zs.A 2451: Show issues Location:
    Je nach Verfügbarkeit (siehe Angabe bei Bestand)
    bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular
    Jg. 1995 - 2021: Lesesall (2.OG)
    ab Jg. 2022: Lesesaal (EG)

    Order via subito

    This service is chargeable due to the Delivery terms set by subito. Orders including an article and supplementary material will be classified as separate orders. In these cases, fees will be demanded for each order.

  3. Article ; Online: Exploring the impact of pediatric short bowel syndrome on parent well-being using a disease-specific pilot survey.

    Neumann, Marie L / Allen, Jessica Y / Ladner, Amy / Kakani, Swapna / Weaver, Meaghann S / Mercer, David F

    Nutrition in clinical practice : official publication of the American Society for Parenteral and Enteral Nutrition

    2023  Volume 39, Issue 1, Page(s) 154–167

    Abstract: Background: Children with short bowel syndrome (SBS) have complex care needs, most of which are met in the home by family caregivers who may experience a range of stressors unique to this experience. Prior research suggests that parents of children with ...

    Abstract Background: Children with short bowel syndrome (SBS) have complex care needs, most of which are met in the home by family caregivers who may experience a range of stressors unique to this experience. Prior research suggests that parents of children with SBS have poorer health-related quality of life than peers parenting children without health needs, but the mechanisms shaping parent outcomes are understudied.
    Methods: A pilot survey was developed using a community-driven research design to measure the impact of disease-specific items on parent-perceived well-being. The cross-sectional survey, which included both closed-ended and open-ended items, was distributed to a convenience sample of parents of children with SBS. Quantitative and qualitative data were integrated for a mixed-methods analysis of how individual items impacted parent well-being.
    Results: Twenty parents completed the survey. Sleep interruptions, lack of support and resources, and psychological stressors and their mental health implications were more frequently reported as stressors than logistics related to caregiving (e.g., managing therapies and preparing specialized meals).
    Conclusion: The impact of a child's SBS on parent well-being may stem mainly from three interconnected domains: poor sleep and its consequences, lack of access to support and resources, and a range of psychological stressors that affect parent mental health. Understanding the mechanisms through which SBS shapes parent well-being is a necessary first step for developing targeted interventions to support parents and provide family-centered care.
    MeSH term(s) Child ; Humans ; Quality of Life ; Short Bowel Syndrome/therapy ; Cross-Sectional Studies ; Parents ; Parenting/psychology
    Language English
    Publishing date 2023-05-28
    Publishing country United States
    Document type Journal Article
    ZDB-ID 645074-x
    ISSN 1941-2452 ; 0884-5336
    ISSN (online) 1941-2452
    ISSN 0884-5336
    DOI 10.1002/ncp.11008
    Database MEDical Literature Analysis and Retrieval System OnLINE

    Full text online

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    In stock of ZB MED Cologne/Königswinter

    Zs.A 2451: Show issues Location:
    Je nach Verfügbarkeit (siehe Angabe bei Bestand)
    bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular
    Jg. 1995 - 2021: Lesesall (2.OG)
    ab Jg. 2022: Lesesaal (EG)

    Order via subito

    This service is chargeable due to the Delivery terms set by subito. Orders including an article and supplementary material will be classified as separate orders. In these cases, fees will be demanded for each order.

  4. Article ; Online: A beautiful struggle: Parent-perceived impact of short bowel syndrome on child and family wellbeing.

    Neumann, Marie L / Allen, Jessica Y / Kakani, Swapna / Ladner, Amy / Rauen, Meghan Hall / Weaver, Meaghann S / Mercer, David F

    Journal of pediatric surgery

    2021  Volume 57, Issue 9, Page(s) 149–157

    Abstract: Background: Despite considerable improvements in outcomes for children with short bowel syndrome (SBS), many clinicians remain pessimistic about long-term quality of life (QoL) for this population.: Methods: The validated FaMM tool was used to ... ...

    Abstract Background: Despite considerable improvements in outcomes for children with short bowel syndrome (SBS), many clinicians remain pessimistic about long-term quality of life (QoL) for this population.
    Methods: The validated FaMM tool was used to measure parent-perceived impact of the child's condition on child and family life. Partnered disease-specific survey questions relevant to child's overall wellbeing and family function were additionally completed and reported. The cross-sectional surveys were distributed to a convenience sample of parents of children with SBS. Child and family wellbeing were described and compared across child age group and involvement of an intestinal rehabilitation program (IRP). Multivariate regression analyses investigated associations between outcomes and IRP management. Open-ended responses were analyzed to investigate perceived impact of the child's SBS on the parent.
    Results: Seventeen parents completed both surveys; 71% perceived child QoL as higher today than what they had originally been told to expect. Child daily life and family difficulty scores suggest parents perceived both to be fairly "normal". While acknowledging effort invested in condition management, parents perceived high competence in managing their child's condition; 56% perceived personal growth resulting from their child's SBS journey. IRP management was associated with better child daily life (4.11, p = 0.015), family difficulty (-4.85, p = 0.048), and family management ability (4.28, p = 0.014) scores.
    Conclusions: Many parents perceive child and family life with SBS to be fairly "normal", manage their child's care with great competence, and report personal growth because of their child's SBS journey. Additional research inclusive of diverse patient and parent backgrounds is warranted.
    Level of evidence: prognosis study; Level IV.
    MeSH term(s) Child ; Cross-Sectional Studies ; Family ; Humans ; Parents ; Quality of Life ; Short Bowel Syndrome/therapy ; Surveys and Questionnaires
    Language English
    Publishing date 2021-10-01
    Publishing country United States
    Document type Journal Article
    ZDB-ID 80165-3
    ISSN 1531-5037 ; 0022-3468
    ISSN (online) 1531-5037
    ISSN 0022-3468
    DOI 10.1016/j.jpedsurg.2021.09.039
    Database MEDical Literature Analysis and Retrieval System OnLINE

    Full text online

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    In stock of ZB MED Cologne/Königswinter

    Zs.A 607: Show issues Location:
    Je nach Verfügbarkeit (siehe Angabe bei Bestand)
    bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular
    Jg. 1995 - 2021: Lesesall (1.OG)
    ab Jg. 2022: Lesesaal (EG)

    Order via subito

    This service is chargeable due to the Delivery terms set by subito. Orders including an article and supplementary material will be classified as separate orders. In these cases, fees will be demanded for each order.

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