Advancing patient engagement: youth and family participation in health research communities of practice

Woodgate, Roberta L.; Zurba, Melanie; Tennent, Pauline

doi:10.1186/s40900-018-0094-2

Cited by 18 publications

(18 citation statements)

References 25 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…In this design, patients and researchers collaborate to address research priorities from the perspectives of patients (Canadian Institutes of Health Research, 2012). Patient oriented research paradigms can drive effective knowledge dissemination strategies and enhance a subpopulation's ability to address its own support needs, while ensuring that researchers understand community priorities (Woodgate, Zurba, & Tennent, 2018). As such, in the current study, a research team worked in partnership with the Sibling Collaborative for the purpose of a secondary analysis of the needs assessment survey that they designed and administered to describe the challenges Ontario siblings experience and how these differ across ages.…”

Section: Introductionmentioning

confidence: 99%

Support needs of Canadian adult siblings of brothers and sisters with intellectual/developmental disabilities

Redquest¹,

Tint

Ries³

et al. 2020

Policy Practice Intel Disabi

View full text Add to dashboard Cite

Background It is becoming more common for siblings to fulfill a caregiving role for their brother or sister, particularly because people with intellectual/developmental disabilities (IDD) are often living longer and outliving their parents. However, most of what we know about siblings of people with IDD is based on research with children, and limited studies on the adult sibling experiences in Canada have been published. To meet the support needs of Canadian adult siblings, “The Sibling Collaborative”, a grass‐roots initiative, conducted a needs assessment. Specific Aims The purpose of this study was to better understand the current challenges siblings experience and how requested resources may differ across three age groups: adults between the ages of 20 and 29 years, 30 to 49 years, and 50 years of age and older. Method A total of 260 siblings of individuals with IDD from across Ontario completed an online survey. Findings Siblings endorsed a relatively low rating of intensity of support that they provided for their brothers or sisters with IDD at the time of survey completion; however, the majority indicated that they intended to take a greater caregiving role in the future. Ratings of support differed by sibling age groups, as did challenges related to supporting brothers or sisters with IDD. Overall, participants reported a range of desired resources and preferred methods of accessing resources. Discussion Siblings' caregiving relationships with their brothers and sisters with IDD differed across age groups. Results from the current study indicate different supports may be needed for different age groups. As policies around the world continue to encourage continued family involvement in caregiving for adults with IDD, it is important to understand how systems can better support sibling caregivers.

show abstract

Section: Introductionmentioning

confidence: 99%

Support needs of Canadian adult siblings of brothers and sisters with intellectual/developmental disabilities

Redquest¹,

Tint

Ries³

et al. 2020

Policy Practice Intel Disabi

View full text Add to dashboard Cite

show abstract

“…The approved work plans include a structure outlining remuneration for patient partner compensation. Thus, the ACCESS OM network is deliberately engaging patient partners in a meaningful way for sharing their expertise, as well as showing value for the time and effort they dedicate to the project, all of which is consistent with the growing consensus regarding the value of compensating patient partners in health research [18].…”

Section: Power Dynamics and Tokenismmentioning

confidence: 68%

“…The inclusion of and partnership with patient partners at an executive level enables professional relationship building and models the values of the ACCESS OM network. Relationship building is an essential element to youth and family engagement in research; these relationships create collaborative spaces between researchers and patient partners [18]. Youth patient partners and family/carer patient partners are voting members of the ACCESS OM Executive Committee in partnership with directors, clinicians, researchers, Indigenous community leaders, and site representatives (see Fig.…”

Section: Patient Partners As Members Of Decision Making Councils and mentioning

confidence: 99%

Shared Decision Making in a Youth Mental Health Service Design and Research Project: Insights From the Pan-Canadian ACCESS Open Minds Network

Guinaudie

Mireault

Tan

et al. 2020

Patient

View full text Add to dashboard Cite

Shared decision making (SDM) is the process by which health care providers and patients collaborate to make health care decisions. This collaboration leads to informed decision making and improved outcomes. However, research on SDM specific to the field of youth mental health is scarce. ACCESS Open Minds (ACCESS OM) is a youth mental health research and evaluation project that implemented and evaluated SDM practices within its various activities and operations. The ACCESS OM network spans a diversity of youth mental health settings across Canada, and includes various stakeholders such as youth, family members and carers, clinicians, researchers, and policy makers. The project values all types of knowledge (specifically, experiential, cultural, clinical, and scientific knowledge) as necessary to lead to better health research, care delivery, and outcomes for patients and their communities. Similarly, it acknowledges the lived experience of patients and, family and carers as expertise. Through the integration of SDM practices, ACCESS OM has formulated valuable insights that can be applied to other health problems and settings. This paper, written by youth and family council members, operational staff, and researchers from the project, will share challenges and solutions that arose in the integration of SDM practices within ACCESS OM's knowledge translation strategy, governance structures, clinical contexts, and capacity-building initiatives.

show abstract

“…Secondly the "PPI Hawker" reduces the barriers between experts and the public, attening or reversing the pyramid of hierarchy 47 . Conventionally lay people are reluctant to challenge perceived expertise 48,49 , but the round table discussions appeared to generate mutual trust, and a willingness for the non-expert to comment, critique and challenge the research.…”

Section: Ppi Facilitator's Experiencementioning

confidence: 99%

The “PPI Hawker”: An innovative method for Patient and Public Involvement (PPI) in health research

Puerta¹,

Smith²

2020

Preprint

View full text Add to dashboard Cite

Background: Patient and Public Involvement (PPI) in health research entails doing research ‘with’ the public. Successful PPI requires a diversity of patients’ perspectives and experiences. In Singapore, including the public’s voice in research is still in its infancy and different ways of involving the public have to be explored. Our aims were to describe a PPI initiative that enables members of the public to share their ideas and opinions about health research, and to assess the feasibility, accessibility and utility of the initiative. Methods: Building on the concept of the PPI Café used in the west we designed a “PPI Hawker” for Singapore. Here Hawker Centres rather than cafes are used frequently for eating and socialising, providing a one-stop destination for a wide section of society. The PPI facilitators approached people sitting at tables and joined them to discuss questions of relevance to a local research study. Observations and reflexive field notes were used to evaluate the “PPI Hawker’s” feasibility, acceptability and utility in the Singaporean community. Results: In three “PPI Hawkers” we approached 96 people and 72 (75%) engaged in discussions about the design of a population-based research study. The majority (75%) of participants willingly discussed all of the questions posed to them by the researchers, indicating the feasibility of PPI. The PPI participants came from the three major ethnic groups in Singapore and appeared to be broad in age, suggesting “PPI Hawkers” are easily accessible. Both participants and researchers recognised the utility of the “PPI Hawker”, reflecting on people’s willingness to talk about the research issues, engaging in informative conversations and posing relevant questions. Conclusion: The “PPI Hawkers” succeeded in engaging the public in conversations about a local population-based study. The public brought to the researchers’ attention a variety of previously unheard perspectives about the research. Each event fostered connectivity between professionals and the public, generating among researchers a more positive perception of the power of public involvement. “PPI Hawkers” provide an opportunity for co-informed conduct of research studies with diverse members of the public. They create a focus within a community setting for researchers to engage with the public. The resources needed (costs and preparatory time) are relatively few. Not only do “PPI Hawkers” have potential in Singapore, but also for the rest of Asia.

show abstract

Advancing patient engagement: youth and family participation in health research communities of practice

Cited by 18 publications

References 25 publications

Support needs of Canadian adult siblings of brothers and sisters with intellectual/developmental disabilities

Support needs of Canadian adult siblings of brothers and sisters with intellectual/developmental disabilities

Shared Decision Making in a Youth Mental Health Service Design and Research Project: Insights From the Pan-Canadian ACCESS Open Minds Network

The “PPI Hawker”: An innovative method for Patient and Public Involvement (PPI) in health research

Contact Info

Product

Resources

About