A Network for Accessible, Sustainable, and Collaborative Research in Pediatric Palliative Care PedPalASCNET

Research Tips and Advice

Our researchers use a number of different methods to investigate our thematic areas of research and have established some techniques that have been useful in addressing some of the key challenges that are present in the field of PEOLC research. A summary of some of our techniques is presented here in the hope that these tips might be useful to other researchers who are interested in designing similar studies.

First and foremost, we believe that children and families are the heart and soul of our research; we therefore do our best to facilitate their participation in our research studies.

1. ENROLLMENT

Go online

In order to maximize the scope of your enrollment, an online recruitment method may be proposed. Firstly, clinicians can give out information about your study website. Secondly, disease-specific organizations such as the MPS Society, and other organizations such as the Rare Diseases Foundation (RDF) and the Canadian Organization for Rare Disorders (CORD), are able to aid in recruitment of eligible families by distributing information about the study on their website and in organizational newsletters¹. Thirdly, take advantage of social media tools such as Facebook to communicate the study to families.

2. ETHICAL CONSIDERATIONS

Start early

Ethical requirements for a study may differ within provinces and across institutions. For instance, one institution may require that only the local contact be identified on all study materials for that site; others may ask that all team members are acknowledged. Our last large study took well over 6 months to complete ethics approvals at multiple sites. Start applications early to avoid delay in your study, and review guidelines at each site carefully².

Vulnerable population

The ethics approval process can be slow and time-consuming. Children with progressive life-threatening diseases are often non-verbal, making it difficult to ascertain if they are willing to consent to the research. Many ethics boards are eager to protect these children, some of whom are the most vulnerable patients in the hospital. Care should be taken to ensure that the child in all instances where capable, is given the opportunity to provide input and consent to participating in the research. Furthermore, cognitive ability may fluctuate in the child, so consent that is obtained verbally or written at any point during the study should be revisited at different time points throughout the study.

Provide incentives

A decision was made to provide non-conditional incentives to participants in the CTT study based on evidence provided by a review of the literature on recruitment and retention in longitudinal studies3-6. The literature indicated that non-conditional incentives are associated with increased response rates to postal questionnaires. In the CTT study, incentives are provided to participants prior to the completion of questionnaires – cheques are mailed out to the family members along with the blank study questionnaires. This means that incentives are not conditional on response. This strategy has also been used in the Parent Caregiver study.  In our experience, only approximately 1% of families have cashed a cheque without completing questionnaires.

3. COMMUNICATION WITH FAMILIES

Obtaining demographics & baseline information  

Whenever possible, complete paper questionnaires in-person in hospital or with a family at a home visit in order to help them with the questions. Provide parents options as to whether they complete surveys by telephone or online (with email reminders) where possible. Complete paper questionnaires by mail but continue to update demographics by phone. The process of regular telephone contact with the family establishes a personal connection with the family.

4. ADVISORY COMMITTEES

Get feedback and advice on your research

A family advisory committee is a good way to learn what families want from research. Our family advisory committees help decide how many questions to ask, and to advise on what is an appropriate amount of time to spend with the family. Feedback at every stage of the research method is essential.

If healthcare professionals are participants in a study, a clinician advisory committee is helpful in developing procedures that are clinically feasible.

5. IMPACT OF PARTICIPATION

Ask the parents

In our studies, we started asking participants to complete an Impact of Participation questionnaire. For example, in the CTT study, parents complete this questionnaire one year after enrolment and again at the conclusion of the study. Preliminary analysis of the CTT study’s Impact of Participation questionnaire shows that participating parents report that the value of research outweighs the burden of participating and that they think research is beneficial. Similarly, the preliminary results of the impact of participation on our population of parent caregivers suggest that pediatric palliative care research is not only valued by parents, but it may also have a positive impact on participants. This is a strong indicator that research in this field is important and valued.


References

  1. Siden, H., Steele, R., Brant, R., Cadell, S., Davies, B., Straatman, L., Widger, K., & Andrews, G. (2010). Designing and Implementing a Longitudinal Study of Children with Neurological, Genetic or Metabolic Conditions: Charting the Territory. BMC Pediatrics, 10:67, 12pp.
  2. Cadell, S., Ho, G., Jacques, L., Wilson, K., Davies, B., & Steele, R., (Letter to the editor) (2009). Considerations for Ethics in Multisite Research in Pediatric Palliative Care. Palliative Medicine, 23 (3), 274-5.
  3. Given, B. A., Keilman, L.J., Collins, C., Given, C. W., (1990) Strategies to minimize attrition in longitudinal studies. Nursing Research, 39(3),184-6.
  4. ShermanDW, McSherry CB, Parkas V, Ye XY, Calabrese M, Gatto M., (2005). Recruitment and retention in a longitudinal palliative care study. Applied Nursing Research,18(3):167-77.
  5. Steinhauser KE, Clipp EC, Hays JC, Olsen M, ArnoldR, Christakis NA, et al. (2006). Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research. Palliative Medicine, 20:745-54.
  6. Janus M, Goldberg S., (1997). Factors influencing family participation in a longitudinal study: Comparison of pediatric and healthy samples. Journal of Pediatric Psychology, 22(2):245-62.



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