IDEAS home Printed from https://ideas.repec.org/a/gam/jijerp/v19y2022i4p1927-d745164.html
   My bibliography  Save this article

What Patients Prioritize for Research to Improve Their Lives and How Their Priorities Get Dismissed again

Author

Listed:
  • Barbara Groot

    (Department Public Health and Primary Care, Leiden University Medical Centre, Leiden University, Albinusdreef 2, 2333 ZA Leiden, The Netherlands
    Leyden Academy on Vitality and Ageing, Rijnsburgerweg 10, 2333 AA Leiden, The Netherlands)

  • Annyk Haveman

    (Centrum voor Cliëntervaringen, Jacob Bontiusplaats 9 (INIT-gebouw), 1018 LL Amsterdam, The Netherlands)

  • Mireille Buree

    (Centrum voor Cliëntervaringen, Jacob Bontiusplaats 9 (INIT-gebouw), 1018 LL Amsterdam, The Netherlands)

  • Ruud van Zuijlen

    (Centrum voor Cliëntervaringen, Jacob Bontiusplaats 9 (INIT-gebouw), 1018 LL Amsterdam, The Netherlands)

  • Juliette van Zuijlen

    (Centrum voor Cliëntervaringen, Jacob Bontiusplaats 9 (INIT-gebouw), 1018 LL Amsterdam, The Netherlands)

  • Tineke Abma

    (Department Public Health and Primary Care, Leiden University Medical Centre, Leiden University, Albinusdreef 2, 2333 ZA Leiden, The Netherlands
    Leyden Academy on Vitality and Ageing, Rijnsburgerweg 10, 2333 AA Leiden, The Netherlands)

Abstract

Health researchers increasingly work with patients in a participatory fashion. Active patient involvement throughout the research process can provide epistemic justice to patients who have often only had an informant role in traditional health research. This study aims to conduct participatory research on patient experiences to create a solid research agenda with patients and discuss it with relevant stakeholders. We followed a participatory research design in 18 sub-studies, including interviews and group sessions ( n = 404 patients), and dialogue sessions ( n = 367 professionals and directors in healthcare and social work, municipality civil servants, and funding agencies) on patient experiences with psychiatric care, community care, daycare, public health, and social work. Findings from the eight-year study show that four priorities stood out: attention for misuse of power and abuse; meaningful participation; non-human assistance, and peer support. Moreover, that: (1) patients, based on their experiences, prioritize different topics than experts; (2) most topics are trans-diagnostic and point to the value of a cross-disability approach; and (3) the priorities of patients are all too easily dismissed and require ethics work to prevent epistemic injustice. Long-term investment in a transdisciplinary community of practice offers a solid basis for addressing patient-centered topics and may impact the quality of life of people living with chronic illness, disability, or vulnerability.

Suggested Citation

  • Barbara Groot & Annyk Haveman & Mireille Buree & Ruud van Zuijlen & Juliette van Zuijlen & Tineke Abma, 2022. "What Patients Prioritize for Research to Improve Their Lives and How Their Priorities Get Dismissed again," IJERPH, MDPI, vol. 19(4), pages 1-15, February.
    • Handle: RePEc:gam:jijerp:v:19:y:2022:i:4:p:1927-:d:745164
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/1660-4601/19/4/1927/pdf
    Download Restriction: no
    File URL: https://www.mdpi.com/1660-4601/19/4/1927/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. Kristin Margrethe Heggen & Henrik Berg, 2021. "Epistemic injustice in the age of evidence-based practice: The case of fibromyalgia," Palgrave Communications, Palgrave Macmillan, vol. 8(1), pages 1-6, December.
    2. Elizabeth Manafò & Lisa Petermann & Virginia Vandall-Walker & Ping Mason-Lai, 2018. "Patient and public engagement in priority setting: A systematic rapid review of the literature," PLOS ONE, Public Library of Science, vol. 13(3), pages 1-18, March.
    3. Rosana E Norman & Munkhtsetseg Byambaa & Rumna De & Alexander Butchart & James Scott & Theo Vos, 2012. "The Long-Term Health Consequences of Child Physical Abuse, Emotional Abuse, and Neglect: A Systematic Review and Meta-Analysis," PLOS Medicine, Public Library of Science, vol. 9(11), pages 1-31, November.
    4. Caron-Flinterman, J. Francisca & Broerse, Jacqueline E.W. & Bunders, Joske F.G., 2005. "The experiential knowledge of patients: a new resource for biomedical research?," Social Science & Medicine, Elsevier, vol. 60(11), pages 2575-2584, June.
    5. Barbara Groot & Tineke Abma, 2021. "Boundary Objects: Engaging and Bridging Needs of People in Participatory Research by Arts-Based Methods," IJERPH, MDPI, vol. 18(15), pages 1-11, July.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Marije Blok & Barbara Groot & Johanna M. Huijg & Alice H. de Boer, 2022. "Older Adults’ Engagement in Residential Care: Pitfalls, Potentials, and the Role of ICTs," IJERPH, MDPI, vol. 19(5), pages 1-14, March.

    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. Simone Harmsen & Carina A C M Pittens & Eva Vroonland & Annemiek J M L van Rensen & Jacqueline E W Broerse, 2022. "Supporting health researchers to realize meaningful patient involvement in research: Exploring researchers’ experiences and needs [New Requirements for Patient and Public Involvement Statements in ," Science and Public Policy, Oxford University Press, vol. 49(5), pages 751-764.
    2. Sánchez-Sandoval, Yolanda & Aragón, Claudia & Verdugo, Laura, 2022. "Future expectations of adolescents in Residential Care: The role of self-perceptions," Children and Youth Services Review, Elsevier, vol. 143(C).
    3. Anke Hoeffler, 2017. "Violence Against Children: A Critical Issue for Development," The European Journal of Development Research, Palgrave Macmillan;European Association of Development Research and Training Institutes (EADI), vol. 29(5), pages 945-963, November.
    4. Xuening Chang & Xueyan Jiang & Tamara Mkandarwire & Min Shen, 2019. "Associations between adverse childhood experiences and health outcomes in adults aged 18–59 years," PLOS ONE, Public Library of Science, vol. 14(2), pages 1-11, February.
    5. Chen, Xiaoxiao & Shao, Jingjin & Pu, Xin & Wang, Zhi, 2023. "Childhood maltreatment and adolescents’ peer victimization: The effect of security, school connectedness and gender," Children and Youth Services Review, Elsevier, vol. 148(C).
    6. Ziewitz, Malte, 2017. "Experience in action: Moderating care in web-based patient feedback," Social Science & Medicine, Elsevier, vol. 175(C), pages 99-108.
    7. Carolien Christ & Marleen M de Waal & Jack J M Dekker & Iris van Kuijk & Digna J F van Schaik & Martijn J Kikkert & Anna E Goudriaan & Aartjan T F Beekman & Terri L Messman-Moore, 2019. "Linking childhood emotional abuse and depressive symptoms: The role of emotion dysregulation and interpersonal problems," PLOS ONE, Public Library of Science, vol. 14(2), pages 1-18, February.
    8. Katie Pybus & Jean McEwan & Kayleigh Garthwaite & Maddy Power & Ruth Patrick & Sydnie Corley, 2022. "It’s Our Story: Parents and Carers’ Experiences during the Pandemic," Sociological Research Online, , vol. 27(3), pages 604-674, September.
    9. Stockl, Andrea, 2007. "Complex syndromes, ambivalent diagnosis, and existential uncertainty: The case of Systemic Lupus Erythematosus (SLE)," Social Science & Medicine, Elsevier, vol. 65(7), pages 1549-1559, October.
    10. Amy van Grieken & Esther M.B. Horrevorts & Cathelijne L. Mieloo & Rienke Bannink & Merian B.R. Bouwmeester-Landweer & Esther Hafkamp-de Groen & Suzanne Broeren & Hein Raat, 2019. "A Controlled Trial in Community Pediatrics to Empower Parents Who Are at Risk for Parenting Stress: The Supportive Parenting Intervention," IJERPH, MDPI, vol. 16(22), pages 1-14, November.
    11. Burnson, Cynthia & Covington, Sarah & Arvizo, Bertha & Qiao, Jun & Harris, Elizabeth, 2021. "The impact of parents anonymous on child safety and permanency," Children and Youth Services Review, Elsevier, vol. 124(C).
    12. Janaína C. N. Carvalho & Júlia C. Donat & Alice E. Brunnet & Thiago G. Silva & Gustavo R. Silva & Christian H. Kristensen, 2016. "Cognitive, Neurobiological and Psychopathological Alterations Associated with Child Maltreatment: A Review of Systematic Reviews," Child Indicators Research, Springer;The International Society of Child Indicators (ISCI), vol. 9(2), pages 389-406, June.
    13. Wolf, Jennifer Price & Freisthler, Bridget & McCarthy, Karla Shockley, 2021. "Parenting in poor health: Examining associations between parental health, prescription drug use, and child maltreatment," Social Science & Medicine, Elsevier, vol. 277(C).
    14. Rachel Langevin & Audrey Kern & Tonino Esposito & Sonia Hélie, 2023. "Homotypical and Heterotypical Intergenerational Continuity of Child Maltreatment: Evidence from a Cohort of Families Involved with Child Protection Services," IJERPH, MDPI, vol. 20(5), pages 1-15, February.
    15. Ran Wu & Hong Zhu & Meng-Yang Wu & Guang-Hai Wang & Chun-Lei Jiang, 2022. "Childhood Trauma and Suicide: The Mediating Effect of Stress and Sleep," IJERPH, MDPI, vol. 19(14), pages 1-11, July.
    16. Mariëlle E. Abrahamse & Vionna M. W. Tsang & Ramón J. L. Lindauer, 2021. "Home-Based Parent–Child Interaction Therapy to Prevent Child Maltreatment: A Randomized Controlled Trial," IJERPH, MDPI, vol. 18(16), pages 1-15, August.
    17. Miguel García-Martín & Carmen Amezcua-Prieto & Bassel H Al Wattar & Jan Stener Jørgensen & Aurora Bueno-Cavanillas & Khalid Saeed Khan, 2020. "Patient and Public Involvement in Sexual and Reproductive Health: Time to Properly Integrate Citizen’s Input into Science," IJERPH, MDPI, vol. 17(21), pages 1-12, October.
    18. Pellowski, Jennifer A. & Barnett, Whitney & Kuo, Caroline C. & Koen, Nastassja & Zar, Heather J. & Stein, Dan J., 2017. "Investigating tangible and mental resources as predictors of perceived household food insecurity during pregnancy among women in a South African birth cohort study," Social Science & Medicine, Elsevier, vol. 187(C), pages 76-84.
    19. Emma Ashworth & Ian Jarman & Philippa McCabe & Molly McCarthy & Serena Provazza & Vivienne Crosbie & Zara Quigg & Pooja Saini, 2023. "Suicidal Crisis among Children and Young People: Associations with Adverse Childhood Experiences and Socio-Demographic Factors," IJERPH, MDPI, vol. 20(2), pages 1-13, January.
    20. Ma, Julie & Han, Yoonsun, 2023. "Heterogeneous effects of spanking on child protective services involvement in early childhood: A propensity score stratification analysis," Children and Youth Services Review, Elsevier, vol. 148(C).

    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:gam:jijerp:v:19:y:2022:i:4:p:1927-:d:745164. 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: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    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.