Oncology Nurses' Perceptions of Participation in Clinical Trials Among Patients With Developmental Disabilities.

Background: Participation in clinical trials among people with disabilities, particularly developmental disabilities (DD), has been limited. Nurses, particularly those providing navigation, can play a key role in educating patients about clinical research. Objective: To explore oncology nurses' repo...

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Publicado en:Journal of Oncology Navigation & Survivorship Vol. 16; no. 11; pp. 302 - 308
Autores principales: Becker, Heather, Phillips, Carolyn, Haack, Irina, Mikan, Sabrina Q.
Formato: research tables/charts Journal Article
Publicado: Amplity Health Nov2025
Acceso en línea:Ver este registro en EBSCOhost
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      jtl: Journal of Oncology Navigation & Survivorship
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      dt: Nov2025
      vid: 16
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      pub: Amplity Health
      place: East Windsor, New Jersey
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        atl: Oncology Nurses' Perceptions of Participation in Clinical Trials Among Patients With Developmental Disabilities.
      aug:
        au:
          Becker, Heather
          Phillips, Carolyn
          Haack, Irina
          Mikan, Sabrina Q.
        affil: The University of Texas at Austin School of Nursing
      sug:
        subj:
          Oncology Nurses Psychosocial Factors
          Nurse Attitudes
          Persons with Disabilities
          Developmental Disabilities
          Research Subject Recruitment
          Patient Participation
          Clinical Trials
          Human
          Texas
          Patient Navigation
          Nursing Role
          Patient Education
          Clinical Research Education
          Outpatients
          Descriptive Statistics
          Referral and Consultation
          Cross Sectional Studies
          Advanced Practice Registered Nurses Psychosocial Factors
          Registered Nurses Psychosocial Factors
          Practical Nurses Psychosocial Factors
          Funding Source
      ab: Background: Participation in clinical trials among people with disabilities, particularly developmental disabilities (DD), has been limited. Nurses, particularly those providing navigation, can play a key role in educating patients about clinical research. Objective: To explore oncology nurses' reports of the inclusion of individuals with DD in clinical trials. Methods: We surveyed the oncology nurses working in a large statewide outpatient provider network that conducts clinical trials about care for their adult patients with DD. The online survey included questions about their professional background and care of patients with DD, as well as items about referral and participation of patients in clinical trials. Results: Nurses in this sample worked as oncology nurses for 12 years on average, and 65% had provided care for between 1 and 6 patients with DD. Seven respondents had not cared for any of these patients. Among the 69 nurses who responded regarding clinical trial referrals, only 16 indicated that, to their knowledge, eligible patients with DD were referred for clinical trials; 7 were aware of patients with DD who did participate. Conclusions: Concerns about patients' ability to voluntarily consent to participate in research must be balanced against the ethical principle of the right of individuals with disabilities to participate fully in healthcare research. This study's results suggest that much work remains to be done to make clinical trials accessible to cancer patients with DD. Nurses, along with other healthcare professionals, must understand how to educate, recruit, and retain patients with DD in clinical research. This includes fostering informed consent for potentially vulnerable groups and overcoming other barriers to clinical trial participation.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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