scholarly journals A Community-Based Approach to Biospecimen Collection Among Pacific Islanders

2018 ◽  
Vol 21 (1) ◽  
pp. 97-105
Author(s):  
Patchareeya Pumpuang Kwan ◽  
Melanie Sabado-Liwag ◽  
Nasya Tan ◽  
James Russell Pike ◽  
Harold Custodio ◽  
...  
Keyword(s):  
Community Based Participatory Research ◽  
Pacific Islanders ◽  
Community Leaders ◽  
Research Approach ◽  
Community Based ◽  
Biospecimen Collection ◽  
Donation Process ◽  
Hair Samples ◽  
Community Input ◽  
Participatory Research Approach

This study tested the feasibility of collecting saliva samples from Pacific Islanders (PIs) via a community-based participatory research approach. Collection of saliva samples were conducted by trained and trusted PI community leaders at various partner sites. A total of 214 saliva samples were donated by PIs living in Southern California, more than half of whom were females between the ages of 18 and 35 years. Donors indicated that they donated because they wanted to help science and their community. A majority of donors reported a very positive experience with the donation process and were willing to donate saliva and hair samples in the future. The positive findings of this article highlight the importance of community input and participation.

scholarly journals Reservations to Participate in Biospecimen Research among Pacific Islanders

2015 ◽  
Vol 13 (3) ◽  
pp. 27-33 ◽  
Author(s):  
Patchareeya Kwan ◽  
Greta Briand ◽  
Cevadne Lee ◽  
Jonathan Lepule ◽  
Karen Llave ◽  
...  
Keyword(s):  
Qualitative Data ◽  
Community Based Participatory Research ◽  
Genetic Data ◽  
Pacific Islanders ◽  
Research Approach ◽  
Attitudes And Beliefs ◽  
Community Based ◽  
Genetic Studies ◽  
Lack Of Information ◽  
Participatory Research Approach

Background and Significance: Despite high rates of chronic diseases like cancer, diabetes and cardiovascular disease, Pacific Islanders (PIs) are underrepresented in clinical and genetic studies designed to identify the physiological causes of poor health outcomes. There are limited genetic data and biospecimen samples from PIs under study. This paper described why PIs have reservations about donating their biospecimen samples for research. Methods: Data were drawn from a pilot study designed to assess the knowledge, attitudes and beliefs surrounding biospecimen research among PIs in southern California. Utilizing a community-based participatory research approach, community and academic partners collected quantitative and qualitative data from a total of 60 PI adults with a mean age of 61 years (SD 13 years). Results: “Fear”, “God or Spirituality” and “Lack of Information or Knowledge” were the most cited reasons for not participating in biospecimen research. Respondents younger than age 65 years expressed more concerns about donating their biospecimen samples than those older than age 65 years (p

A Community-Engaged Project Discovering the Sexuality Questions of Adults With Intellectual and Developmental Disabilities

Inclusion ◽  
2021 ◽  
Vol 9 (1) ◽  
pp. 2-16
Author(s):  
Rebecca R. Kammes ◽  
Rhonda S. Black ◽  
Trisha Easley
Keyword(s):  
Developmental Disabilities ◽  
Sexuality Education ◽  
Developmentally Appropriate ◽  
Community Based Participatory Research ◽  
Research Approach ◽  
Intellectual And Developmental Disabilities ◽  
Community Based ◽  
Sexual Health Information ◽  
Education Group ◽  
Participatory Research Approach

Abstract This study used a community-based participatory research approach to examine what adults with intellectual and developmental disabilities (IDD) view as important topics in sexuality education. A thematic analysis was conducted on questions written by adults with IDD regarding sexuality after attending a sexuality education group. Results were checked for accuracy using a community focus group. Findings provide direct implications for community-based sexuality education programs for adults with IDD, demonstrating the need for mentoring regarding authentic relationship experiences as well as developmentally appropriate sexual health information. Programs need to focus on helping adults with IDD navigate these interpersonal experiences. This study also demonstrates the importance of including the voices of adults with IDD in research in order to ensure its applicability and acceptability.

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