IDEAS home Printed from https://ideas.repec.org/a/sae/clnure/v15y2006i2p86-104.html
   My bibliography  Save this article

Being the Next of Kin of an Adult Person With Muscular Dystrophy

Author

Listed:
  • Katrin Boström

    (Swedish Institute for Disability Research, Örebro and Linköping Universities; Center for Rehabilitation Research, Örebro County Council)

  • Gerd Ahlström

    (Helena Sunvisson Örebro University, Sweden)

  • Helena Sunvisson

Abstract

A chronic disorder affects all members of the family in various ways. The aim of this study is to elucidate the next of kin's ( N = 36) experiences when an adult family member has muscular dystrophy. The relationships were partner (36%, n = 14), parent (18%, n = 7), child (21%, n = 8), sibling (15%, n = 6), and other relative (3%, n = 1). Latent content analysis is employed and involves an interpretation of the interviewtext. The results showthe meaning of being close to a person with muscular dystrophy through the themes that emerged: exposure of the family; the span between obligation and love; being vigilant, protective, and supportive; and striving for an ordinary life. This study reveals a need for healthcare staff to understand the next of kin's narrated meaning of changes when a family member has a progressive disease.

Suggested Citation

  • Katrin Boström & Gerd Ahlström & Helena Sunvisson, 2006. "Being the Next of Kin of an Adult Person With Muscular Dystrophy," Clinical Nursing Research, , vol. 15(2), pages 86-104, May.
  • Handle: RePEc:sae:clnure:v:15:y:2006:i:2:p:86-104
    DOI: 10.1177/1054773805285706
    as

    Download full text from publisher

    File URL: https://journals.sagepub.com/doi/10.1177/1054773805285706
    Download Restriction: no

    File URL: https://libkey.io/10.1177/1054773805285706?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    References listed on IDEAS

    as
    1. Northouse, Laurel L. & Mood, Darlene & Templin, Thomas & Mellon, Suzanne & George, Tamara, 2000. "Couples' patterns of adjustment to colon cancer," Social Science & Medicine, Elsevier, vol. 50(2), pages 271-284, January.
    2. Sprangers, Mirjam A. G. & Schwartz, Carolyn E., 1999. "Integrating response shift into health-related quality of life research: a theoretical model," Social Science & Medicine, Elsevier, vol. 48(11), pages 1507-1515, June.
    3. Gibbons, F. X., 1999. "Social comparison as a mediator of response shift," Social Science & Medicine, Elsevier, vol. 48(11), pages 1517-1530, June.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Damschroder, Laura J. & Zikmund-Fisher, Brian J. & Ubel, Peter A., 2005. "The impact of considering adaptation in health state valuation," Social Science & Medicine, Elsevier, vol. 61(2), pages 267-277, July.
    2. Kaiser, Caspar, 2022. "Using memories to assess the intrapersonal comparability of wellbeing reports," Journal of Economic Behavior & Organization, Elsevier, vol. 193(C), pages 410-442.
    3. Peter A. Ubel & George Loewenstein & John Hershey & Jonathan Baron & Tara Mohr & David A. Asch & Christopher Jepson, 2001. "Do Nonpatients Underestimate the Quality of Life Associated with Chronic Health Conditions because of a Focusing Illusion?," Medical Decision Making, , vol. 21(3), pages 190-199, May.
    4. Valentina Piwowar & Felicitas Thiel, 2014. "Evaluating Response Shift in Training Evaluation," Evaluation Review, , vol. 38(5), pages 420-448, October.
    5. Dibb, Bridget & Yardley, Lucy, 2006. "How does social comparison within a self-help group influence adjustment to chronic illness? A longitudinal study," Social Science & Medicine, Elsevier, vol. 63(6), pages 1602-1613, September.
    6. Wim Groot, 2003. "Scale of reference bias and the evolution of health," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 4(3), pages 176-183, September.
    7. Maes, Kenneth C. & Hadley, Craig & Tesfaye, Fikru & Shifferaw, Selamawit, 2010. "Food insecurity and mental health: Surprising trends among community health volunteers in Addis Ababa, Ethiopia during the 2008 food crisis," Social Science & Medicine, Elsevier, vol. 70(9), pages 1450-1457, May.
    8. Winter, Laraine & Parker, Barbara, 2007. "Current health and preferences for life-prolonging treatments: An application of prospect theory to end-of-life decision making," Social Science & Medicine, Elsevier, vol. 65(8), pages 1695-1707, October.
    9. Svenja M. Spuling & Oliver Huxhold & Susanne Wurm, 2017. "Predictors of Self-Rated Health: Does Education Play a Role Above and Beyond Age?," The Journals of Gerontology: Series B, The Gerontological Society of America, vol. 72(3), pages 415-424.
    10. Julie Yun Chen & Eric Yuk Fai Wan & Edmond Pui Hang Choi & Anca Ka Chun Chan & Karina Hiu Yen Chan & Joyce Pui Yan Tsang & Cindy Lo Kuen Lam, 2017. "The Health-Related Quality of Life of Chinese Patients on Hemodialysis and Peritoneal Dialysis," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 10(6), pages 799-808, December.
    11. Markus Wettstein & Hans-Werner Wahl & Anna Schlomann, 2022. "The Impact of the COVID-19 Pandemic on Trajectories of Well-Being of Middle-Aged and older Adults: A Multidimensional and Multidirectional Perspective," Journal of Happiness Studies, Springer, vol. 23(7), pages 3577-3604, October.
    12. Joseph T. King Jr. & Joel Tsevat & Judith R. Lave & Mark S. Roberts, 2005. "Willingness to Pay for a Quality-Adjusted Life Year: Implications for Societal Health Care Resource Allocation," Medical Decision Making, , vol. 25(6), pages 667-677, November.
    13. Mohamed Boucekine & Laurent Boyer & Karine Baumstarck & Aurelie Millier & Badih Ghattas & Pascal Auquier & Mondher Toumi, 2015. "Exploring the Response Shift Effect on the Quality of Life of Patients with Schizophrenia," Medical Decision Making, , vol. 35(3), pages 388-397, April.
    14. Emslie, Carol & Browne, Susan & MacLeod, Una & Rozmovits, Linda & Mitchell, Elizabeth & Ziebland, Sue, 2009. "'Getting through' not 'going under': A qualitative study of gender and spousal support after diagnosis with colorectal cancer," Social Science & Medicine, Elsevier, vol. 68(6), pages 1169-1175, March.
    15. de Hond, Anne & Bakx, Pieter & Versteegh, Matthijs, 2019. "Can time heal all wounds? An empirical assessment of adaptation to functional limitations in an older population," Social Science & Medicine, Elsevier, vol. 222(C), pages 180-187.
    16. Chia-Huei Wu, 2009. "Enhancing quality of life by shifting importance perception among life domains," Journal of Happiness Studies, Springer, vol. 10(1), pages 37-47, March.
    17. Fereshteh Ghahramani & Jingguo Wang, 2020. "Impact of Smartphones on Quality of Life: A Health Information Behavior Perspective," Information Systems Frontiers, Springer, vol. 22(6), pages 1275-1290, December.
    18. Giorgio Eduardo Montanari & Marco Doretti & Maria Francesca Marino, 2022. "Model-based two-way clustering of second-level units in ordinal multilevel latent Markov models," Advances in Data Analysis and Classification, Springer;German Classification Society - Gesellschaft für Klassifikation (GfKl);Japanese Classification Society (JCS);Classification and Data Analysis Group of the Italian Statistical Society (CLADAG);International Federation of Classification Societies (IFCS), vol. 16(2), pages 457-485, June.
    19. Astrid Wahl & Tone Rustøen & Berit Hanestad & Eva Gjengedal & Torbjørn Moum, 2005. "Self-Efficacy, Pulmonary Function, Perceived Health and Global Quality of Life of Cystic Fibrosis Patients," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 72(2), pages 239-261, June.
    20. Bar-Tal, Yoram & Barnoy, Sivia & Zisser, Bracha, 2005. "Whose informational needs are considered? A comparison between cancer patients and their spouses' perceptions of their own and their partners' knowledge and informational needs," Social Science & Medicine, Elsevier, vol. 60(7), pages 1459-1465, April.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:sae:clnure:v:15:y:2006:i:2:p:86-104. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: SAGE Publications (email available below). General contact details of provider: .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.