Impact of Research Participation on Parents of Seriously Ill Children

Steele, Rose; Cadell, Susan; Siden, Harold; Andrews, Gavin J.; Quosai, Trudy Smit; Feichtinger, Leanne

doi:10.1089/jpm.2013.0529

Cited by 16 publications

(14 citation statements)

References 39 publications

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“…In agreement with previous studies, our study indicated that improving care for future patients was the main driver for clinical trial participation . Previous studies around participation of children and/or parents at the end of life in research other than clinical trials reported similar motives . Parents may have redefined their goals and find comfort in giving meaning to their child's life .…”

Section: Discussionsupporting

confidence: 90%

“…Previous studies around participation of children and/or parents at the end of life in research other than clinical trials reported similar motives . Parents may have redefined their goals and find comfort in giving meaning to their child's life . Several parents in the current study participated in the trial because they hoped their child might be cured, although a cure was very unlikely in these children.…”

Section: Discussionmentioning

confidence: 55%

“…For instance, parents who choose supportive care alone during the palliative phase focus more often on the fact that the child will not survive and minimising the child's suffering . Healthcare professionals might help parents to strike a balance between the benefits of participation in a clinical trial, but also preserving the child's needs and protecting them from severe suffering .…”

Section: Discussionmentioning

confidence: 99%

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Participation in a clinical trial for a child with cancer is burdensome for a minority of children

et al. 2016

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Section: Discussionsupporting

confidence: 90%

Section: Discussionmentioning

confidence: 55%

Section: Discussionmentioning

confidence: 99%

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Participation in a clinical trial for a child with cancer is burdensome for a minority of children

et al. 2016

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“…Among those who agreed to participate, the low burden scores and comments suggest the opposite: that asking family members to reflect on their experience was helpful and gave them perspective on how they were coping, at least among participating family members. This finding supports other recent research demonstrating that families of critically ill children value research participation despite concerns from funders and institutional review boards that postulate potential harms from the burden of answering sensitive questions [40]. This positive experience was also reflected in a very high retention rate: 92% of all respondents completed questionnaires at all 3 time points.…”

Section: Discussionsupporting

confidence: 85%

“…The recruitment rate of 50% provides important information for other investigators planning supportive intervention trials with family members in the PICU. The recruitment rate is in between previous studies that have reported recruitment rates ranging from 42–90% depending on the nature of the study and its relevance to family members [36–40]. However, the retention of over 90% of the families far exceeded our expectations and what has been reported in this previous research.…”

Section: Discussionsupporting

confidence: 55%

The Family Communication Study: A randomized trial of prospective pediatric palliative care consultation, study methodology and perceptions of participation burden

Starks

Doorenbos

Lindhorst

et al. 2016

Contemporary Clinical Trials

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Background To describe the study methods, baseline characteristics and burden of study procedures of an intervention designed to reduce family stress symptoms through early support from the palliative care team. Length of stay of ≥8 days was the trigger for early palliative care involvement. Methods Cluster-randomized trial with children as the unit of randomization. Up to 3 family members per child were recruited. Family stress symptoms were recorded at baseline, discharge from the ICU, and 3 months post-enrollment. Questionnaire burden was assessed on a 1–10 point scale at each time point and open-ended comments were analyzed to describe the participants’ experience in the study. Results 380 family members of 220 children (control=115 children and 204 family members; intervention=105 children and 176 family members) were recruited, which represented 50% of all eligible families. Most family participants were parents (86% control; 92% intervention) and female (66% both groups). Retention rates were high through the 3-month follow-up: 93% and 90% for the control and intervention groups respectively. Questionnaire burden was very low: mean (sd) scores were 1.1 (1.6), 0.7 (1.5), and 0.9 (1.6) for the baseline, discharge and follow-up questionnaires, respectively. Comments suggest that participation was beneficial by promoting reflection and self-awareness about stress, coping and resilience, and feeling cared for because the intervention and questionnaires focused on their own well-being. Conclusions The participants’ comments regarding the focus on them as the point of intervention reflects the value of conducting research with family members of seriously ill children during ICU stays.

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Factors influencing participation rates in clinical late‐effect studies of childhood cancer survivors

Helligsoe

Henriksen

Kenborg

et al. 2021

Pediatric Blood & Cancer

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To ensure external validation of a study population in clinical late-effect studies of childhood cancer, the participation rate must be high. This study investigated demographic data in Nordic late-effect studies and potential factors impacting participation rates such as cancer type, time since diagnosis, and duration of clinical examinations.We found 80 published studies originating from 16 cohorts, with median follow-up of 6.0 years (range 3-14). The overall participation rates ranged from 27% to 100%. The highest participation rates were seen in studies of survivors with solid tumors (92%) and the lowest in hematologic malignancies (67%) and central nervous system tumors (73%). The clinical examination in 10 studies (62.5%) lasted for more than 3 hours.Neither duration of the clinical examination nor time since diagnosis seemed to affect the participation rate. We encourage future studies to describe the recruitment process more thoroughly to improve understanding of the factors influencing participation rates.

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Impact of Research Participation on Parents of Seriously Ill Children

Cited by 16 publications

References 39 publications

Participation in a clinical trial for a child with cancer is burdensome for a minority of children

Participation in a clinical trial for a child with cancer is burdensome for a minority of children

The Family Communication Study: A randomized trial of prospective pediatric palliative care consultation, study methodology and perceptions of participation burden

Factors influencing participation rates in clinical late‐effect studies of childhood cancer survivors

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