UBC Faculty Research and Publications

Impact of research participation on parents of seriously ill children Steele, Rose; Cadell, Susan; Siden, Harold; Andrews, Gail; Smit Quosai, Trudy; Feichtinger, Leanne 2014

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1 Impact of research participation on parents of seriously ill children   Rose Steele, RN, PhD 1, Susan Cadell, RSW, PhD 2, Harold Siden, MD, MHSc, FRCP 3 4, Gail Andrews, MEd 4, Trudy Smit Quosai, PhD 5, and Leanne Feichtinger, BSc 4   1 School of Nursing, Faculty of Health, York University, Toronto, Ontario, Canada. 2 School of Social Work, Renison University College–University of Waterloo, Waterloo, Ontario, Canada. 3 Department of Paediatrics, University of British Columbia, Canuck Place Children’s Hospice, Vancouver, British Columbia, Canada. 4 Developmental Neuroscience and Child Health, Child & Family Research Institute, Vancouver, British Columbia, Canada. 5 Renison University College-University of Waterloo, Waterloo, Ontario, Canada.                                                                                       Final publication is available from Mary Ann Liebert, Inc., publishers: http://dx.doi.org/ 10.1089/jpm.2013.0529. 2 Abstract  Background: There is a paucity of research evidence to guide health care providers’ practice in pediatric palliative care. At the same time, some clinicians and IRBs are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families.  Objective: To obtain parents’ perceptions about their experience of participating in 1 of 2 research studies.  Design: Descriptive, quantitative survey.  Setting/Subjects: Caregivers of children with life-threatening conditions (n=323) who were caring for the child at home.  Measurements: Researcher-designed Impact of Participation questionnaire.  Results: Few differences between the 2 groups were found on Impact responses. Not a single parent reported regretting participating in their study and almost all (96.3%) reported that conducting research about family’s experiences in pediatric palliative care had value. Just over three quarters (76.2%) did not find participation at all painful, and 73.7% reported that participation was about as painful as expected, with 23.2% reporting less painful. About half (50.5%) said that participation had at least some positive effect and only 3 parents reported any negative effect. An overwhelming majority (93.4%) would recommend participation to other parents in a similar situation.  Conclusions: Participation in research for families with children who have a life-threatening condition is not only acceptable to parents, but may in fact have a positive effect. Though clinicians and IRBs may be hesitant to fully support such research, it is clear that conducting research in the field of pediatric palliative care is important.    3 Introduction Palliative care clinicians from all disciplines value evidence-informed practice. However, palliative care is a relatively new field and, particularly in pediatric palliative care, the scarcity of research upon which to base practice is frequently noted.1-3 One reason for this lack of evidence may be the challenges to conducting research that, in turn, limit the development of a strong evidence base.3,4-6 For example, the relatively small number of children with specific conditions often necessitates multi-site studies that are complex and time-consuming.4 Similarly, patient vulnerability and the burden of research on participants are often cited as concerns about research related to palliative care.7-10 Yet, contrary to the frequently expressed concerns by clinicians and Institutional Review Boards (IRBs) that research will be too onerous or troubling for families in palliative situations, there is evidence that participation can have positive effects in altruistic and therapeutic realms.9,11,12 In a critical synthesis of palliative care research, most participants in all studies experienced positive effects; only a small minority reported distress.13 Reported benefits include a sense of helping and improving care for others, increased self-awareness, catharsis and healing, empowerment, and autonomy.13 There also is some indication that writing or talking about traumatic experiences can reduce physical stress responses.14,15 At the same time, it is recognized that many people find it at least somewhat painful to talk about the death of their child.11 In an extensive review of the literature on pediatric palliative care research, Rapoport16 concluded that participation in research during the illness, and after a child’s death, can be a positive experience for participants and that such research should continue. Studies with bereaved parents have highlighted parents’ eagerness to share their child’s illness and death story and to provide input to help other families.14,17 While some parents report that discussions about 4 diagnosis and/or their child’s death may be difficult,11 the majority deny any negative impact or distress from participating in research17,18. Indeed, interviews have been reported as therapeutic and a positive experience.14 Another concern noted about palliative care research is that it takes time that could be spent in other ways, such as being with family.19 However, given the potential benefits of participating in research and the practice of family-centred care that is prevalent in pediatrics, it seems somewhat paradoxical that clinicians and IRBs might prevent families from choosing how they wish to spend their time. If this population is consistently denied access to research then not only may the potential benefits of such research be lost, but the autonomy of patients and families may be subverted.7,8 Undoubtedly, parents caring for a child with a life-threatening condition (LTC) have a significant burden of care,20 and they deal with ambiguity about treatments, trajectories, and outcomes.21 Often the parent’s role in caregiving intensifies as the child’s condition progresses and the need to navigate support systems for their child increases. Parents’ needs and distress may be high in palliative situations and so interventions to address those needs and reduce distress are warranted.19 Developing such interventions necessitates undertaking research with families to provide a suitable evidence base.22 But given the demands on these parents, there is often reluctance from clinicians and IRBs to perhaps further burden them with research participation. There is a need to resolve this quandary; direction from parents might lead to a resolution. However, little is known about participants’ perceptions regarding the burdens of research,23 and parents’ views around research participation when a child is receiving palliative care are unclear.3 The purpose of this paper is to describe the impact of participating in a 5 research study for parents who were concurrently caring for a child with a LTC. We recognize that the terms ‘life-limiting’ and ‘life-threatening’ may be used interchangeably by clinicians and in the literature, but there is often controversy over which term should be used; we use ‘life-threatening’ within this paper. Methods Data on impact of participation were obtained from family caregivers in two separate longitudinal, multisite research projects concerning families where a child had a LTC. Description of studies The first study, Stress and growth over time: Caregiving and bereaved parents of children with life-limiting illnesses (PCG), was conducted with adult family members who were caring or had cared for a child with a LTC; more than one family member could participate. Participants were recruited through clinics and parent support organizations in Canada and the USA. Eligibility included caregivers whose child (0 to 19 years of age at baseline) had any of the physiologically diverse conditions that may pose a threat to the child’s life, regardless of the variability in life expectancy or the possibility of cure. Eligibility, therefore, included such conditions as cancer, irreversible organ failure, cystic fibrosis, neurodegenerative diseases, genetic and metabolic disorders, anoxic brain injury, and severe cerebral palsy. At their convenience, caregivers completed 3 sets of 16-page questionnaire packages, sent and returned by mail at 1-year intervals. Each package included demographic information, short answer questions about caring for their child, and the following scales: 12-item Meaning in Caregiving Scale;24 10-item Life Orientation Test - Revised (LOT-R)25 to measure optimism; 6-item Self Esteem Scale;26 22-item Spiritual Involvement and Beliefs Scale - Revised (SIBS-R);27 6 20-item Center for Epidemiologic Studies Depression Scale (CES-D);28 4-item Caregiver Burden scale;24 21-item Posttraumatic Growth Inventory (PTGI).29 The second study, Charting the Territory: Determining and documenting trajectories for families where a child has a life-threatening condition (CTT), was a 5-year project involving children 0-19 years diagnosed with progressive neurological, metabolic, or chromosomal conditions; their siblings aged 7-18 years; and at least one, but both parents if possible. Families were followed for a minimum of 18 months and through bereavement if a child died during the study and the family agreed to continue. Recruitment occurred in clinics and hospitals across Canada (n=7) and in the USA (n=2). Eligibility required the child to have a progressive and incurable condition that manifests in neurological (CNS) impairment and is known/likely to have a genetic or metabolic cause. There could be no effective treatment available or treatment was failing, and there had to be a good probability that children with this condition would die before their 20s. Data collection included monthly parental assessment of the child’s symptoms and an annual functional assessment; and completion of established instruments every 6 months for siblings and their parents, including from 6 months after bereavement if appropriate. Similar to PCG, parents in CTT completed the SIBS-R,27 CES-D,28 Caregiver Burden,24 and PTGI.29 Additional questionnaires included: 20-item Family Adaptability and Cohesion Evaluation Scale;30 6-item Norton’s Quality of Marriage Index;31 12-item SF-12v2™ Health Survey;32 20-item State-Trait Anxiety Inventory (State)33; 10-item Perceived Stress Scale34; 5-item researcher-adapted Grief questionnaire. Both studies also included an Impact of Participation questionnaire designed within our team for use in our research projects. This questionnaire was completed at Time 3 for both 7 studies, i.e., as parents completed their third questionnaire package, which was one year post-baseline for CTT and at the final time point for PCG (Table 1). Questions related to perceived value of the research, reasons for participating, expectations about and actual painfulness of participation, and positive and negative effects of participating. Though both studies included bereaved parents, this paper reports on results from non-bereaved participants only, because the low number of bereaved parents was insufficient for a comparison analysis. Both projects received approval from the IRBs at participating institutions; parents provided written consent for CTT and return of the questionnaires provided assumed consent for PCG. Analyses were conducted using IBM® SPSS® Version 20; P values <.05, two-sided tests, were considered to be statistically significant. Effect sizes were calculated as Cohen’s d for continuous variables and Phi coefficient for categorical variables. Descriptive statistics were used to summarize the demographics and Impact results. Two-sample t-tests and χ² tests were used to compare: CTT and PCG on demographics and Impact; responders and non-responders on demographics; and child’s condition (PCG only), time since diagnosis, and age on Impact for both male and female caregivers. Bonferroni corrections were made for the comparisons between child and Impact. Results Sample characteristics In PCG, 123 caregivers responded from 104 families; CTT included 200 parents from 138 families, 8 of whom had 2 affected children. Some differences between PCG and CTT on parental and child demographics were evident. For example, PCG parents were older than those in CTT (P = <.001) and the male/female ratio was different, with the percentage of males higher 8 in CTT (P = .004) (Table 2); children in CTT were younger than those in PCG (P = <.001) and had been diagnosed more recently (P = <.001) (Table 3). No statistically significant differences were found between those who completed the Impact questionnaire, the responders, and those who did not, the non-responders, based on parental (Table 2) or child demographic variables (Table 3). Impact of participation Most responses were similar between CTT and PCG parents (Table 4). The vast majority of participants (96.3%, n = 310/322) thought that conducting research about their families’ experiences had at least some value. A total of 261 out of 322 parents (81.1%) stated that it was very valuable to conduct research about their affected child’s symptoms. Reasons for participating in the research study varied, but the most frequent were for altruistic (to help others; 96.3%, n = 311/323) or therapeutic reasons (to talk about their experiences; 36.8%, n = 119/323). Slightly over three quarters (76.2%, n = 246/323) did not find participation at all painful, and most reported that participation was about as painful as they expected (73.7%, n = 235/319), with 23.2% (n = 74/319) reporting participation being less painful than expected. About half (50.5%, n = 163/323) said that the study had at least some positive effect on them, and almost all the rest (48.6%, n = 157/323) reported neither a positive or negative effect. Only three parents (0.9%) experienced any negative effect. Not a single one of 323 parents reported regretting participating in the research, and 93.4% (n = 300/321) would recommend participation in a similar study to another parent in a similar situation. Comparisons between the Impact results from male and female responders with the selected child characteristics of condition (PCG only), time since diagnosis, and age were not statistically significant (Table 5). 9 Discussion Our findings closely mirror the literature related to research in palliative care.9,11-13,17,18,35 Similar to parents of children with cancer36 and to results from a synthesis of palliative care research,13 the most frequently reported reason for parents in this study to participate in research was to help others. It may be that participation in research helps parents make meaning of their circumstances. Dyregrov11 found that parents who were bereaved as a result of suicide, SIDS, or accidents felt that interviews facilitated meaning reconstruction and awareness of the bereavement process, even though it was painful to talk about the loss. This meaning making, in turn, may help facilitate growth,37 growth that can occur in the midst of parents struggling with their loss.38 Further research needs to be conducted on how clinicians can facilitate meaning making in a variety of ways when parents are caring for a child with a LTC and, thus, assist parents to experience growth despite the challenging circumstances. Parents also reported that they chose to participate in the research so they could talk about their experiences, a finding that supports previous studies.3,13 Further, parents may have reported high levels of positive responses to study participation because it helped them with their own physical responses.14,15 Comparable to what is reported in the literature,16-18,39,40 parents not only supported the research, but made it clear that participating in this type of research was important. Although parenting a child with a LTC creates distress for parents and places high demands on their time,20 the vast majority of parents reported that the research was valuable to them and, for about half, it had at least some positive effect. Some situations might increase distress or decrease positive aspects of research, e.g., repeated research involvement has been associated with less positive reports compared to the first participation.35 However, participants 10 in this study had completed measures at three time points when they reported on the impact of participation and their assessments were mostly positive. It will be informative to track the impact of participation over time as the CTT project continues, and ideally through an extension for another 5-year period. Another indication of positive impact is willingness to continue to participate.15 In addition to participants reporting few negative and some positive effects, both CTT and PCG showed good response and retention rates. Overall, the results reinforce the notion that palliative care research should be available to this population. While some parents in palliative research report that discussions of their child’s condition or death may be difficult, the majority deny any negative impact or distress caused by participation in this type of research.5,11,12,14,17,18 Somewhat consistent with Dyregrov11, some of the parents reported that it was ‘a little painful’ to participate in the current study. However, most did not find it painful at all. Further, for the majority, the pain they expected to feel because of participation in the study matched their expectations. Moreover, most of the others found participation to be less painful than expected. These findings suggest that parents of children with LTCs who choose to participate in studies consider their own tolerance and burden before they agree to participate. Therefore, the decision to participate or not, and to continue or not, may be made only after thoughtful reflection by parents. Given that parents of children with LTCs seem to enter studies with some knowledge of the potential impact, it seems that rather than viewing these parents as vulnerable and in need of protection it is incumbent on clinicians and IRBs to recognize parents’ autonomy and find ways to support them if they choose to participate in studies. In addition, clinicians and IRBs need to be aware that it is acceptable for a study in pediatric palliative care to potentially cause some psychosocial pain for parents; but it should be left up to the parents to decide for themselves if 11 the benefits of participating outweigh the risks and to determine if they are willing to tolerate possible pain in order to gain some benefits for themselves and for others. Familiarity with these findings among members of review boards may affect the way that protocols are perceived and reviewed. It seems clear from this study that while IRBs still need to consider the vulnerability of this population, they also need to respect the autonomy of parents and families and not prevent ethically-sound studies from being made available to families in palliative situations because they are worried that a study may be too onerous for these families. Overall, this study addresses two research gaps by providing new information about research with families of children with LTCs who were mostly from Canada: (1) Research about the impact of participation has tended to focus on palliative patients, carers of adults, or bereaved carers;13 our population was caregivers of children with LTCs; (2) Most palliative research emerges from the USA, U.K., or Australia;13 our findings provide evidence from yet another country. This study supports previous contentions that research with these families can be reviewed using the same principles and protocols as other research studies10,19 and provides guidance for clinicians and IRBs who are deciding about whether or not to support research in this area. This study has some limitations, though the large sample size for this population lends credence to the results. All the participants self-selected and we do not know how parents who did not participate might react to research participation. However, psychosocial research in palliative care is generally conducted with volunteers; therefore, the self-selection in this study is reflective of most sample selection in palliative research. We do not know much about the experiences of people who withdrew from the study, so it is possible that some participants 12 withdrew because they found the process too painful. Further examination of the impact of participation is needed with this population. We have little information about the longer-term effects of participation in research, though one could argue that given parents answered the Impact of Participation questionnaire after completing data collection three times over a period of at least 1 year then the results might hold true for longer-term effects. In CTT, parents will complete the questionnaire again at the end of the study, so at 2-4 years post-baseline. Comparisons of parents’ reports over time will add to the evidence about longer-term effects of participation in research. In some cases, parents might have been inclined to provide more positive responses about research than they actually felt; however, this inclination may have been ameliorated by providing a written, mailed questionnaire rather than face-to-face discussion. The consistency in responses across participants and between the two samples, even though there were some demographic differences, and the wide variety of conditions affecting the children suggest that bias towards answering positively is unlikely. Finally, though there was space for parents to provide some qualitative data, most questions were close-ended and so the tool provided a limited window into the experiences of parents who participate in research. Dyregrov11 noted the potential for research to help reconstruct meaning and increase awareness of the bereavement process; further investigation of the experiences of caregiving parents might include qualitative interviews to explore the impact of research participation in these areas. Conclusions The results of this study suggest that not only is pediatric palliative care research valued by parents, but it also may have a positive impact on participants. Though some clinicians and IRBs may be hesitant to fully support such research, findings from parents is a strong indicator 13 that research in this field is important to families and these results should be consciously considered when evaluating study applications. Acknowledgments  The authors would like to thank all the families who participated in the study. We also thank the research assistants in each study setting for their contribution to data collection.  Finally, we thank our site lead clinician collaborators who enabled access to families and acted as lead investigators in the various settings:  Sharron Spicer - Calgary, AB, Canada (Alberta Children’s Hospital) Helly Goez/Dawn Davies - Edmonton, AB, Canada (Stollery Children’s Hospital) Adam Rapoport - Toronto, ON, Canada (Hospital for Sick Children) Christina Vadeboncoeur - Ottawa, ON, Canada (Children’s Hospital of Eastern Ontario) Stephen Liben - Montreal, QC, Canada (Montreal Children’s Hospital) Marie-Claude Gregoire - Halifax, NS, Canada (IWK Health Centre) Scott Schwantes - St. Paul’s, MN, USA (Gillette’s Children’s Specialty Healthcare) Stefan J. Friedrichsdorf - Minneapolis, MN, USA (Children’s Hospitals and Clinics of Minnesota)  Author Disclosure Statement All authors declare that there is no conflict of interest and no competing financial interests exist. 14 References 1. American Academy of Pediatrics: Palliative care for children. Pediatrics 2000;106:351-357. 2. Steele R, Derman S, Cadell S, Davies B, Siden H, Straatman L: Families’ transition to a Canadian paediatric hospice. Part one: Planning a pilot study. Int J Palliat Nurs 2008;14:248-256. 3. Tomlinson D, Bartels U, Hendershot E, Constantin J, Wrathall G, Sung, L: Challenges to participation in paediatric palliative care research: A review of the literature. Palliat Med 2007;21:435-440. 4. Cadell S, Ho G, Jacques L, Wilson K, Davies B, Steele R: Considerations for ethics in multisite research in pediatric palliative care. Palliat Med 2009;23:274-275. 5. Hinds PS, Burghen EA, Pritchard M: Conducting end-of-life studies in pediatric oncology. West J Nurs Res 2007;29:448-465. 6. Jubb AM: Palliative care research: Trading ethics for an evidence base. J Med Ethics 2002;28:342-346. 7. Berry SR: For purposes of research, palliative care patients should not be considered a vulnerable population. Clin Oncol (R Coll Radiol) 2004;16:223-224. 8. Fine PG: Maximizing benefits and minimizing risks in palliative care research that involves patients near the end of life. J Pain Symptom Manage 2003;25:S53-S62. 9. Lee S, Kristjanson L: Human research ethics committees: Issues in palliative care research. Int J Palliat Nurs 2003;9:13-18. 10. Stevens T, Wilde D, Paz S, Ahmedzai SH, Rawson A, Wragg D: Palliative care research protocols: A special case for ethical review? Palliat Med 2003;7:482-490. 15 11. Dyregrov K: Bereaved parents’ experience of research participation. Soc Sci Med 2004;58:391-400. 12. Scott DA, Valery PC, Boyle FM, Bain CJ: Does research into sensitive areas do harm? Experiences of research participation after a child’s diagnosis with Ewing’s sarcoma. Med J Aust 2002;177:507-510. 13. Gysels MH, Evans C, Higginson, IJ: Patient, caregiver, health professional and researcher views and experiences of participating in research at the end of life: A critical interpretive synthesis of the literature. BMC Med Res Methodol 2012;12:123. 14. Hynson JL, Aroni R, Bauld C, Sawyer SM: Research with bereaved parents: A question of how not why. Palliat Med 2006;20:805-811. 15. Jorm AF, Kelly CM, Morgan AJ: Participant distress in psychiatric research: A systematic review, Psychol Med 2007;37:917-926. 16. Rapoport A: Addressing ethical concerns regarding pediatric palliative care research. Arch Pediatr Adolesc Med 2009;163:688-691. 17. Kreicbergs U, Valdimarsdóttir U, Steineck G, Henter JIH: A population-based nationwide study of parents’ perception of a questionnaire on their child’s death due to cancer. Lancet 2004;364:787-789. 18. Olcese ME, Mack JW: Research participation experiences of parents of children with cancer who were asked about their child’s prognosis. J Palliat Med 2012;15:269-273. 19. Casarett D, Karlawish J: Are special ethical guidelines needed for palliative care research? J Pain Symptom Manage 2000;20:130-139. 16 20. Cadell S, Kennedy K, Hemsworth D: Informing social work practice through research with parent caregivers of a child with a life-limiting illness. J Soc Work End Life Palliat Care 2012;8:356-381. 21. Bluebond-Langner M, Belasco J, Goldman A, Belasco C: Understanding parents’ approaches to care and treatment of children with cancer when standard therapy has failed. J Clin Oncol 2007;25:2414-2419. 22. Steele R, Bosma H, Fletcher Johnston M, et al: Research priorities in pediatric palliative care: A Delphi study. J Pall Care 2008;24:229-239. 23. Ulrich CM, Wallen GR, Feister A, Grady C: Respondent burden in clinical research: When are we asking too much of subjects? IRB 2005;27:17-20. 24. Noonan AE, Tennstedt SL: Meaning in caregiving and its contribution to caregiver well-being. Gerontologist 1997;37:785-794. 25. Scheier MF, Carver CS, Bridges MW: Distinguishing optimism from neurotiscism (and trait anxiety, self-mastery, and selfesteem): A reevaluation of the life orientation test. J Pers Soc Psychol 1994;67:1063-1078. 26. Society and the Adolescent Self-Image. Rosenberg M. Princeton University Press, Princeton, NJ, 1965. 27. Hatch RL, Burg MA, Naberhaus DS, Hellmich LK: The Spiritual Involvement and Beliefs Scale. Development and testing of a new instrument. J Fam Pract 1998;46:476-486. 28. Radloff LS: The CES-D scale: A self-report depression scale for research in the general population. Appl Psych Meas 1977;1:385-401. 29. Tedeschi RG, Calhoun LG: The posttraumatic growth inventory: Measuring the positive legacy of trauma. J Trauma Stress 1996;9:455-471. 17 30. Olson DH: Circumplex model VII: Validation studies and FACES III. Fam Process 1986;25:337-351. 31. Norton R: Measuring marital quality: A critical look at the dependent variable. Marriage Fam 1983;45:141-151. 32. SF-12: How to Score the SF-12 Physical and Mental Health Summary Scales, 2e. Ware J, Kosinski M, Keller SD. Health Institute, New England Medical Centre, Boston, MA, 1995. 33. STAI Manual for S-T-A-I (Self-Evaluation Questionnaire). Spielberger C, Gorsuch F, Lushene R. Consulting Psychologist Press, Palo Alto, CA, 1971. 34. Cohen S, Kamarck T, Mermelstein R: A global measure of perceived stress. J Health Soc Behav 1983;24:385-396. 35. Emanuel EJ, Fairclough DL, Wolfe P, Emanuel LL: Talking with terminally ill patients and their caregivers about death, dying, and bereavement: Is it stressful? Is it helpful? Arch Intern Med 2004,164:1999-2004. 36. Read K, Fernandez CV, Gao J, et al: Decision-making by adolescents and parents of children with cancer regarding health research participation. Pediatrics 2009;124:959-965. 37. Tedeschi RG, Calhoun LG: Posttraumatic growth: Conceptual foundations and empirical evidence. Psychol Inq 2004;15:1-18. 38. Cadell S, Hemsworth D, Davies B, et al: Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model. Am J Orthopsychiatry (revision submitted). 39. Contro N, Larson J, Scofield S, Sourkes B: Family perspectives on the quality of pediatric palliative care. Arch Pediatr & Adolesc Med 2002;156:14-19. 18 40. Woodgate RL: Living in a world without closure: Reality for parents who have experienced the death of a child. J Palliat Care 2006;22:75-82. 19 TABLE 1. RETENTION RATES FOR NON-BEREAVED CAREGIVERS, SEPARATELY BY THE TWO STUDIES  Time-point CTTa PCGb Time 1    Invited     Participated (Baseline) 385 families: 93 ineligible/declined unable to contact 34 390 parents in 258 families (67%)  (Baseline) 367 contacted phoneline 341 eligible 273 usable questionnaires returned (80.1%) Time 2    Packages sent    Packages returned (6 months) 338 (227 families) 305/338 (203 families) (90.2%) (1 year) 163 145/163 (89%) Time 3 (Impact)    Packages sent    Packages returned    Impact returned  (1 year) 285 (190 families) 218/285 (148 families) (76.5%) 200/285 parents (70.2%) (2 years) 145 123/141 (87.2%) 123/141 (87.2%)  a Families were recruited into the CTT study over a period of approximately 3 years. Not everyone had yet reached the Time 3 mark; therefore, only those non-bereaved caregivers who had done so by the time of analysis for this report were included in the numbers for Times 2 and 3. Also, it should be noted that sometimes families missed a time-point, e.g., because their child’s condition needed their attention, they were too busy, or they were away on vacation, but then continued at the next one; numbers at T3 are lower than numbers of families continuing in the study.  b Caregivers in the PCG study were initially in a cross-sectional study that had 273 participants. When funding was obtained for a renewal, caregivers who had indicated an interest in other research (n = 268), but then excluding the 9 who had become bereaved, were contacted for the Times 2 and 3 follow-up study. From the total attempted contacts (n = 259), some could not be contacted (n = 88) and 11 others did not want to participate in the new study, e.g., because ‘child now grown’, ‘not a good time’, or no reason given. A further 3 new relatives joined the study. The final sample size for Time 2 non-bereaved, therefore, was 163. A total of 4 parents became bereaved between Times 2 and 3; % for participation at Time 3 reflects the number of non-bereaved rather than the total number of packages sent.   20 TABLE 2. DEMOGRAPHIC CHARACTERISTICS FOR PARENTS FROM BOTH CTT AND PCG, AND COMPARISONS BETWEEN THE TWO STUDIES   Characteristic CTT (N = 200) PCG (N = 123)  P valuesa,b,c Gender    Female    Male  133 (66.5) 67 (33.5)  101 (82.1) 22 (17.9) .002 [.17] (.26 [.06]/.75 [.02]) Age (years)    20 to 35    36 to 45    46 to 55    Over 55 39.5 + 8.1d 59 (29.5) 94 (47) 40 (20) 7 (3.5) 45.5 + 6.7d 11 (8.9) 44 (35.8) 57 (46.3) 11 (8.9) <.001 [.81] (.36 [.09]/.52 [.08]) Marital status    Married/Living as married    Divorced or separated    Never married    Widowed  181 (90.5) 12 (6) 6 (3) 1 (0.5)  98 (79.7) 18 (14.6) 6 (4.9) 1 (0.8) .04 [.16] (.81 [.05]/.24 [.14]) Employment status    Full-time    Not employed    Part-time    Paid leave    Self-employed    Retired    Unpaid leave  79 (39.5) 74 (37) 30 (15) 9 (4.5) 5 (2.5) 2 (19) 1 (0.5) (n=122) 58 (47.5) 24 (19.7) 27 (22.1) 2 (1.6) 8 (6.6) 2 (1.6) 1 (0.8) .01 [.22] (.57 [.12]/.18 [.18]) Level of education completed    High school or less    Post-secondary  40 (20) 160 (80)  20 (17.1) 102 (82.9) .51 [.04] (.8 [.01]/.05 [.12]) Family household income    Under $40,000    $40,000 to < $80,000    $80,000 to < 120,000    $120,000 and over (n=196) 48 (24.5) 74 (37.87) 42 (21.4) 32 (16.3) (n=120) 20 (16.7) 37 (30.8) 31 (25.8) 32 (26.7) .05 [.16] (.19 [.11]/.64 [.08])  Numbers are frequency (%) unless otherwise indicated.  a χ2 was used for categorical variables and two-sample t-test was used for the continuous variable to test by study (CTT vs. PCG). b χ2 was used for categorical variables and two-sample t-test was used for continuous variables to compare parents who completed the Impact questionnaire with those who did not. Comparisons between variables were made using baseline data from all parents at Time 1, and tests were run separately by study (CTT: n = 390 except for income where n = 377; PCG: n = 273 except for income where n = 264). P values are reported as (CTT/PCG). c Effect size reported in [], Cohen’s d for continuous variables, Phi coefficient for categorical variables. 21 d Plus-minus values are means + SD.   22 TABLE 3. DEMOGRAPHIC CHARACTERISTICS FOR CHILDREN FROM BOTH CTT AND PCG, AND COMPARISONS BETWEEN THE TWO STUDIES   Characteristic CTT (N = 146) PCG (N = 104)  P valuesa,b,c Gender    Female    Male  75 (51.4) 71 (48.6)  54 (51.9) 50 (48.1) .93 [.01] (.77 [.02]/.89 [.01]) Age (at Time 3; years)    0 to 5    6 to 10    11 to 15    16 to 20    Over 20 8.1 + 5.3d 60 (41.1) 37 (25.3) 31 (21.2) 17 (11.6) 1 (0.7) 12.8 + 5d 5 (4.8) 29 (27.9) 35 (33.7) 25 (24) 10 (9.6) <.001 [.92] (.96 [.01]/.64 [.06]) Condition    Group 1 (e.g., cystic fibrosis)    Group 2 (e.g., cancer)    Group 3 total number          Neurodegenerative diseases/Severe epilepsy          Multi-organ congenital abnormalities    Severe neurological impairment (NYD)    Lysosomal/Peroxisomal leukodystrophy    Mitochondrial encephalomyopathy    Structural CNS abnormalities    Neuromuscular diseases    Small molecules disorders    Other metabolic diseases    Other conditions (NOS)    Group 4 (e.g., cerebral palsy)  N/Ae N/Ae 146 (100) 31 (21.2) 28 (19.2) 28 (19.2) 21 (14.4) 16 (11) 10 (6.8) 5 (3.3) 3 (2.1) 3 (2.1) 1 (0.7) N/Ad (n=102) 10 (9.8) 3 (2.9) 84 (80.8) 3 (3.6) 3 (2.9) 1 (1.2) 3 (3.6) 0 1 (1.2) 72 (85.7) 0 1 (1.2) 0 5(4.9)  (.16 [.23]/.81 [.06]) Time since diagnosis (at Time 3; years)    0 to 5    6 to 10    11 to 15    16 to 20    Over 20    Missing/not yet diagnosed 6.2 + 4.6d 54 (37) 30 (20.5) 15 (10.3) 7 (4.8) 0 40 (27.4) 10.3 + 4.8d 15 (14.4) 40 (38.5) 26 (25) 20 (19.2) 2 (1.9) 1 (1) <.001 [.88] (.84 [.03]/.39 [.12])  Numbers are frequency (%) unless otherwise indicated.  a χ2 was used for categorical variables and two-sample t-test was used for continuous variables to test by study (CTT vs. PCG), though children’s condition was excluded because CTT only included one group. b χ2 was used for categorical variables and two-sample t-test was used for continuous variables to compare child characteristics for parents who completed the Impact questionnaire with those 23 who did not. Comparisons between variables were made using baseline data from all children at Time 1, and tests were run separately by study (CTT: n = 275 except for time since diagnosis where n = 206; PCG: n = 228 for gender, n = 235 for age, n = 232 for condition and for time since diagnosis). P values are reported as (CTT/PCG). c Effect size reported in [], Cohen’s d for continuous variables, Phi coefficient for categorical variables. d Plus-minus values are means + SD. e Only children with group 3 conditions were included in CTT.    24 TABLE 4. IMPACT OF PARTICIPATION RESULTS  Impact Question CTT (N=200) PCG (N=123) P valuesa How valuable is it to conduct research about your affected child’s symptoms?    Not valuable    A little valuable    Very valuable (n=199)  9 (4.5) 38 (19.1) 152 (76.4)   2 (1.6) 12 (9.8) 109 (88.6) .02 [.15] How valuable is it to conduct research about you and your family’s experiences?    Not valuable    A little valuable    Very valuable (n=199)  10 (5) 46 (23.1) 143 (71.9)   2 (1.6) 20 (16.3) 101 (82.1) .77 [.13] Why did you agree to participate in this research study?b    To help others in a similar situation    So I could talk about the experience I had    Other (e.g., because research/science in general is beneficial and crucial to overall advancements; to learn something about oneself)    Felt pressured by my family/friend    Felt pressured by the researcher    Felt pressured by the clinic physician  193 (96.5) 78 (39) 27 (13.5)   8 (4) 1 (0.5) 1 (0.5)  118 (95.9) 41 (33.3) 12 (9.8)   2 (1.6) 0 (0) 0 (0)  .79 [.02] .3 [.06] .32 [.06]   .23 [.07] .43 [.04] .43 [.04] How painful was it to participate in this study?    Very painful    A little painful    Not painful at all  1 (0.5) 47 (23.5) 152 (76)  2 (1.6) 27 (22) 94 (76.4) .57 [.06] Compared to what you might have been expecting, were the questions?    More painful than expected    About what I expected    Less painful than expected (n=198)  5 (2.5) 144 (72.7) 49 (24.7) (n=121)  5 (4.1) 91 (75.2) 25 (20.7) .54 [.06] Overall would you say participating in this study had a positive or a negative effect on you?    Very positive    A little positive    Neither positive or negative    A little negative    Very negative   36 (18) 60 (30) 102 (51) 2 (1) 0 (0)   24 (19.5) 43 (35) 55 (44.7) 1 (0.8) 0 (0) .72 [.06] Do you regret participating in this study No (n=199) 199 (100)  123 (100)  Would you recommend to another parent in a similar situation that they participate in a similar study?    Yes    No (n=198)  180 (90.9) 18 (9.1)   120 (97.6) 3 (2.4) .02 [.13]  25 Numbers are frequency (%).  a χ2 was used for categorical variables to test by study (CTT vs. PCG), except for if parents regretted participating as no-one had responded ‘Yes’; Phi coefficient calculated for effect size, reported in []. b Numbers total more than sample size for relevant study group (CTT & PCG) because parent could select multiple options; % is out of total sample size for relevant study group.   26 TABLE 5. COMPARISONS BETWEEN SELECTED CHILD CHARACTERISTICS AND SELECTED PARENTAL IMPACT OF PARTICIPATION RESULTS BY PARENT GENDER  Impact Question P values Agea P values Timeb P values Conditionc How valuable is it to conduct research about your affected child’s symptoms? .76 [.2]/.89 [.19]; .52 [.33]/.84 [.43] .22 [.29]/.86 [.23]; .64 [.3]/.58 [.45] .98 [.1]/.49 [.26] How valuable is it to conduct research about you and your family’s experiences? .52 [.24]/.77 [.22]; .8 [.26]/.23 [.68] .04d [.36]/.99 [.16]; .81 [.26]/.32 [.55] .61 [.14]/.89 [.1] How painful was it to participate in this study? .78 [.19]/.42 [.29]; .98 [.08]/69 [.5] .88 [.17]/.4 [.32]; .43 [.24]/.33 [.55] .43 [.25]/.68 [.19] Compared to what you might have been expecting, were the questions? .89 [.17]/.79 [.22]; .91 [.23]/.47 [.4] .8 [.19]/.75 [.26]; .94 [.21]/.28 [.42] .42 [.25]/.24 [.26] Overall would you say participating in this study had a positive or a negative effect on you? .21 [.35]/.18 [.4]; .63 [.38]/.6 [.53] .72 [.26]/.17 [.45]; .96 [.27]/.74 [.39] .71 [.25]/.76 [.16] Would you recommend to another parent in a similar situation that they participate in a similar study? .39 [.18]/.97 [.07]; .89 [.13]/N/Ae .58 [.15]/.97 [.1]; .14 [.33]/N/Ae .88 [.08]/N/Ae  Phi coefficient calculated for effect size, reported in [].  a χ2 was used to compare child’s age in 5 categories with parental responses on selected Impact questions, by gender of parent. Tests were run separately by study and P values are reported as CTT female/PCG female; CTT male/PCG male. b χ2 was used to compare child’s time since diagnosis in categories with parental responses on Impact questions, by gender of parent. Tests were run separately by study and P values are reported as CTT female/PCG female; CTT male/PCG male. c χ2 was used to compare child’s conditions in 4 groups with parental responses on Impact questions, by gender of parent. Tests were run only for PCG because CTT included only 1 group and P values are reported as PCG female/PCG male. d Not statistically significant at Bonferroni-corrected P < .0008. e No males in PCG cohort responded ‘No’, so test could not be run.   

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