Research With Vulnerable Families Caring for Children With Life-Limiting Conditions

Stevens, Michael; Lord, Bruce; Proctor, Marie-Therese; Nagy, Sue; O'Riordan, Elizabeth

doi:10.1177/1049732309356097

Cited by 48 publications

(52 citation statements)

References 27 publications

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“…Recognising the potentially emotional nature of the interviews, the researcher sought (in a similar manner to Stevens et al (2010)) to facilitate a supportive environment in a number of ways. This included using an age/ability appropriate warm-up exercise with younger participants (under 16 years) and those with LCIs.…”

Section: Some Ethical Issuesmentioning

confidence: 99%

Perspectives of disabled young people with degenerative conditions on making choices with parents and peers

Mitchell

2011

Qualitative Social Work

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Section: Some Ethical Issuesmentioning

confidence: 99%

Perspectives of disabled young people with degenerative conditions on making choices with parents and peers

Mitchell

2011

Qualitative Social Work

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“…Pediatric patients decline study because of not wanting to talk with health care professionals, lack of interest, or other engagements. 6 Web-based methods for capturing and producing video-based interventions and data collection may decrease participant burden and appeal to children and teens. However, few studies have examined parent caregivers’ research preferences regarding web-based data collection or intervention delivery methods or the capabilities of their phones or computers to perform innovative, technologically advanced research activities such as video recording via distance.…”

mentioning

confidence: 99%

Facebook Advertisements Recruit Parents of Children With Cancer for an Online Survey of Web-Based Research Preferences

2015

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Background Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and web-based research methods may help address such challenges yet have not been explored in pediatric cancer populations. Objective This study examined the feasibility of using Facebook ads to recruit parent caregivers of children and teens with cancer. We also explored the feasibility of web-based video recording in pediatric palliative care populations by surveying parents of children with cancer regarding (a) their preferences for research methods and (b) technological capabilities of their computers and phones. Methods Facebook's paid advertising program was used to recruit parent caregivers of children currently living with cancer to complete an electronic survey about research preferences and technological capabilities. Results The advertising campaign generated 3,897,981 impressions which resulted in 1050 clicks at a total cost of $1129.88. Of 284 screened individuals, 106 were eligible. Forty-five caregivers of children with cancer completed the entire electronic survey. Parents preferred and had technological capabilities for web-based and electronic research methods. Participant survey responses are reported. Conclusion Facebook was a useful, cost-effective method to recruit a diverse sample of parent caregivers of children with cancer. Web-based video recording and data collection may be feasible and desirable in samples of children with cancer and their families. Implications for Practice Web-based methods (e.g., Facebook, Skype) may enhance communication and access between nurses and pediatric oncology patients and their families.

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“…This is more likely to occur in emergency situations, with participants in institutional settings or undergoing medical treatments, and with disadvantaged groups, such as the poor or socially excluded (Cain et al, 2003;Rogers). Examples of recent studies in which researchers defined their participants as vulnerable include mental health service users (Tee & Lathlean, 2004), Latino adolescents and their families (Zayas, 2009), Hispanic drug users (Singer et al, 2008), and families of children with life-limiting conditions (Stevens, Lord, Proctor, Nagy, & O'Riordan, 2010).…”

Section: Vulnerable Populations and Sensitive Issues Vulnerable Populmentioning

confidence: 97%

Utilizing Participants’ Strengths to Reduce Risk of Harm in a Study of Family Estrangement

Agllias

2011

Qual Health Res

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In this article I examine some issues involved in researching vulnerable populations and sensitive issues, and the challenges and risks of researching issues of a deeply personal nature. Participants might have complex needs and vulnerabilities, but they also have many resources to ensure their own well-being. I ask researchers to move beyond the minimum standards espoused by human ethics committees, and utilize participant strengths to further reduce the risk of harm. My reflections on a study of older people who were experiencing family estrangement highlight some of the actions that participants used to increase their personal safety. I discuss the usefulness of "strengths" questions in assessing risk and facilitating participant strengths to minimize harm. Finally, I propose a three-way model for reducing risk that involves the "lessons learned" from ethics committees, researchers, and the participants themselves.

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Research With Vulnerable Families Caring for Children With Life-Limiting Conditions

Cited by 48 publications

References 27 publications

Perspectives of disabled young people with degenerative conditions on making choices with parents and peers

Perspectives of disabled young people with degenerative conditions on making choices with parents and peers

Facebook Advertisements Recruit Parents of Children With Cancer for an Online Survey of Web-Based Research Preferences

Utilizing Participants’ Strengths to Reduce Risk of Harm in a Study of Family Estrangement

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