Participation in Online Research Examining End-of-Life Experiences: Is It Beneficial, Burdensome, or Both for Parents Bereaved by Childhood Cancer?

Tager, Julia; Battles, Haven; Bedoya, Sima Zadeh; Gerhardt, Cynthia A.; Young‐Saleme, Tammi; Wiener, Lori

doi:10.1177/1043454219836963

Cited by 13 publications

(10 citation statements)

References 21 publications

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“…Children receiving palliative care, their family caregivers, and their providers have together documented the overwhelmingly positive impact of not only their participation but their actual partnership in PPC research. 2,[4][5][6] Family caregiver partnerships have brought underrecognized and underexplored topics (hospice transitions, support for bereaved siblings, and symptom management) to the forefront of research and intervention priorities; have reviewed and refined data collection materials to foster understandability; have expanded research participation to underrepresented communities through established and trusted peer relationships; and have creatively disseminated research results to foster family access.…”

Section: Discussionmentioning

confidence: 99%

“…Although families are diverse in cultural, ethnic, educational, gender, and spiritual backgrounds, family caregivers emphasize the benefits and nonharms of participation in PPC research. 2,[4][5][6] Research is best informed by learning from us about the ways that our backgrounds may influence our readiness for research or even our trust in the research process. Just as the research team has insight into methodology and study design, we do have a complementary perspective on when and how our experiences should be shared.…”

Section: Parent Perspective Dr Moonmentioning

confidence: 99%

“…Bereaved family caregivers or those facing serious illness in a loved child often experience themselves being on the outside of research or having research done to them rather than with them. 2,3 Given the benefits of partnering as part of care delivery, it follows that the child's family caregivers would also be partners in research aimed at expanding the knowledge base to guide clinical care. PPC aligns well with the tenets of patient-and family-centered research: trust, reciprocal relationships, honesty, transparency, respectful partnerships, cultural competency, and shared decisionmaking.…”

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confidence: 99%

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Family Caregiver Partnerships in Palliative Care Research Design and Implementation

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Section: Discussionmentioning

confidence: 99%

Section: Parent Perspective Dr Moonmentioning

confidence: 99%

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“…There are important ethical considerations in conducting research at sensitive time points such as acute trauma, end‐of‐life, and at initial diagnosis of a life‐threatening or life‐altering condition . Potential concerns are heightened when conducting research on minors, where special efforts must be made to obtain both informed consent and assent .…”

Section: Discussionmentioning

confidence: 99%

Perceptions of participating in family‐centered fertility research among adolescent and young adult males newly diagnosed with cancer: A qualitative study

Nahata

Dattilo

Lipak

et al. 2019

Pediatric Blood & Cancer

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Background: Over half of male childhood cancer survivors experience infertility after treatment, which is known to cause distress and impact future quality of life. Sperm banking rates remain low, and little is known about how adolescent and young adult (AYA) males and their families make fertility preservation (FP) decisions. This study examined AYA and parent perceptions of participating in a research study focused on testing a new FP decision tool at the time of cancer diagnosis.Methods: Forty-four participants (19 mothers, 11 fathers, 14 male AYAs 12-25 years old) from 20 families completed brief assessments at diagnosis and approximately one month later, including a qualitative interview exploring the impact of study participation. Verbatim transcripts were coded through thematic content analysis using the constant comparison method. Results: Two major themes emerged: (1) a positive effect of participating in the study and (2) a neutral effect (no positive/negative effect of participation). Subthemes that emerged for participants who noted a positive effect included (a) participation prompted deeper thinking, (b) participation influenced family conversations, and (c) participation resulted in altruism/helping others. No participant reported a negative effect. Conclusions:This study demonstrates that participation in family-centered research focused on FP among AYA males, before treatment begins, is perceived as beneficial or neutral at the time of a new cancer diagnosis. These findings provide support for future family-centered FP interventions for this population. K E Y W O R D Sadolescents and young adult males, cancer, fertility Childhood cancer survival rates exceed 80%, 1 but more than half of males experience infertility as a late effect of treatment. [2][3][4] Survivors often want biological children, and infertility may cause psychosocial distress and have a negative effect on intimate relationships and quality of life. 5-8 Thus, it is paramount to proactively address infertility risk and offer fertility preservation (FP) options before treatment. 9,10 Sperm banking is a safe and effective FP method available to pubertal males. 11 Although the increasing number of fertility programs Abbreviations: AYA, adolescent and young adult; FP, fertility preservation. has expanded FP access, 12-14 sperm banking rates remain under 40% at many pediatric cancer centers. 6,15 Older age, sexual experience, and provider recommendation increase the likelihood of sperm banking. 16,17 However, many adolescents and young adults (AYAs) advised to bank by their healthcare team still ultimately decline FP. 16 Fertility and sexual/reproductive health are sensitive topics, often difficult to discuss within families. 18,19 A recent study conducted immediately after the initiation of cancer treatment highlighted the importance of parent involvement in sperm banking decisions. 20However, AYAs and their parents may have discordant reproductive

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“…Participants were also asked about which types of support provided by the child's health-care team would best help facilitate these conversations (i.e., provide resources to parents to help talk to the child, have a provider talk to the child, be in the room while parents talk to the child, or other). Published work pertaining to other aspects and questions involved in the survey can be found in the references section (Tager et al, 2019; Wiener et al, 2020).…”

Section: Methodsmentioning

confidence: 99%

End of life communication among caregivers of children with cancer: A qualitative approach to understanding support desired by families

et al. 2021

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Objectives Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer. Methods Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; n = 102) with an average age of 49.15 (SD = 8.03) years. Deceased children were of an average age of 12.42 years (SD = 6.01) and nearly 90% of children died within 5 years of diagnosis. Results Most caregivers spoke with their child about their prognosis (61.8%; n = 131) and death (66.7%; n = 99). Half of children (48%; n = 125) asked about death, particularly older children (51.9% ≥12 years; p = 0.03). Asking about dying was related to having conversations about prognosis (p ≤ 0.001) and death (p ≤ 0.001). Most caregivers (71.8%; n = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; n = 16) or to be present while caregivers spoke to the child (19.8%; n = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support. Significance of results Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.

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Participation in Online Research Examining End-of-Life Experiences: Is It Beneficial, Burdensome, or Both for Parents Bereaved by Childhood Cancer?

Cited by 13 publications

References 21 publications

Family Caregiver Partnerships in Palliative Care Research Design and Implementation

Family Caregiver Partnerships in Palliative Care Research Design and Implementation

Perceptions of participating in family‐centered fertility research among adolescent and young adult males newly diagnosed with cancer: A qualitative study

End of life communication among caregivers of children with cancer: A qualitative approach to understanding support desired by families

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