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Hedén, L., von Essen, L. & Ljungman, G. (2020). Children’s self-reports of fear and pain levels during needle procedures. Nursing Open, 7(1), 376-382
Open this publication in new window or tab >>Children’s self-reports of fear and pain levels during needle procedures
2020 (English)In: Nursing Open, E-ISSN 2054-1058, Vol. 7, no 1, p. 376-382Article in journal (Refereed) Published
Abstract [en]

Aim

The objective was to determine the levels of and potential relationships between, procedure‐related fear and pain in children.

Design

Clinical based cross‐sectional.

Methods

Ninety children aged between 7–18 years were included consecutively and self‐reported levels of pain and fear on a 0–100 mm visual analogue scales (VAS) when undergoing routine needle insertion into a subcutaneously implanted intravenous port following topical anaesthesia.

Results

The needle‐related fear level was reported to be as high as the needle‐related pain level (mean VAS: 14 mm and 12 mm, respectively, N = 90). With fear as the dependent variable, age and pain were significantly associated and explained 16% of the variance. With pain as the dependent variable, fear was significantly associated and explained 11% of the variance. A post hoc analysis indicated that younger children reported their fear levels to be higher than their pain levels.

Keywords
Cancer, children, fear, needle, nurses, pain, self-report
National Category
Clinical Medicine Cancer and Oncology Pediatrics
Research subject
Pediatrics; Psychology; Oncology
Identifiers
urn:nbn:se:uu:diva-399074 (URN)10.1002/nop2.399 (DOI)31871722 (PubMedID)
Funder
Swedish Childhood Cancer FoundationSwedish Cancer Society
Available from: 2019-12-12 Created: 2019-12-12 Last updated: 2020-01-31Bibliographically approved
Hagström, J., Ander, M., Cernvall, M., Ljótsson, B., Wiman, H. W., von Essen, L. & Woodford, J. (2020). Heeding the psychological concerns of young cancer survivors: A single-arm feasibility trial of CBT and a cognitive behavioral conceptualization of distress. PeerJ, 8, Article ID e8714.
Open this publication in new window or tab >>Heeding the psychological concerns of young cancer survivors: A single-arm feasibility trial of CBT and a cognitive behavioral conceptualization of distress
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2020 (English)In: PeerJ, ISSN 2167-8359, E-ISSN 2167-8359, Vol. 8, article id e8714Article in journal (Refereed) Published
Abstract [en]

Background

A subgroup of adolescent and young adult (AYA) survivors of cancer during adolescence report high levels of psychological distress. To date, evidence-based psychological interventions tailored to the cancer-related concerns experienced by this population are lacking. The present study aimed to (1) examine the feasibility and preliminary efficacy of an individualized cognitive behavioral therapy (CBT) intervention for AYA survivors of cancer during adolescence; and (2) identify and conceptualize cancer-related concerns as well as maintaining factors using cognitive-behavioral theory.

Methods

A single-arm trial, whereby AYA survivors of cancer during adolescence (aged 17–25 years) were provided individualized face-to-face CBT at a maximum of 15 sessions. Clinical outcomes were assessed at baseline, post-intervention, and three-month follow-up. Intervention uptake, retention, intervention delivery, and reliable change index scores were examined. An embedded qualitative study consisted of two unstructured interviews with each participant pre-intervention. Along with individual behavioral case formulations developed to guide the intervention, interview data was analyzed to identify and conceptualize cancer-related concerns and potential maintaining factors.

Results

Ten out of 213 potential participants invited into the study were included, resulting in an overall participation rate of 4.7%. Nine participants completed the intervention, with respectively seven and eight participants completing the post-intervention and three month follow-up assessment. The majority of reported cancer-related concerns and maintaining factors were conceptualized into four themes: social avoidance, fear of emotions and bodily symptoms, imbalance in activity, and worry and rumination.

Conclusions

Given significant recruitment difficulties, further research is required to examine barriers to help-seeking in the AYA cancer survivor population. However, the conceptualization of cancer-related concerns and maintaining factors experienced by the population may represent an important first step in the development of psychological support tailored toward AYA cancer survivors’ unique needs.

Keywords
AYA survivor, Feasibility, Cancer, CBT, Behavioral conceptualization, Psychological concerns, Internet-based intervention
National Category
Cancer and Oncology Pediatrics Psychiatry Psychology
Research subject
Pediatrics; Oncology; Psychiatry; Psychology
Identifiers
urn:nbn:se:uu:diva-407159 (URN)10.7717/peerj.8714 (DOI)
Funder
Swedish Childhood Cancer Foundation, PR2013-0039; PR2016-0004Swedish Childhood Cancer Foundation, PR2017-0005Swedish Cancer Society, 13 0457
Available from: 2020-03-20 Created: 2020-03-20 Last updated: 2020-03-30Bibliographically approved
Kamsvåg Magnusson, T., Svanberg, A., Garming Legert, K., Arvidson, J., von Essen, L., Mellgren, K., . . . Ljungman, G. (2020). Prevention of oral mucositis with cryotherapy in children undergoing hematopoietic stem cell transplantations: A feasibility study and randomized controlled trial feasibility study and randomized controlled trial. Supportive Care in Cancer
Open this publication in new window or tab >>Prevention of oral mucositis with cryotherapy in children undergoing hematopoietic stem cell transplantations: A feasibility study and randomized controlled trial feasibility study and randomized controlled trial
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2020 (English)In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339Article in journal (Refereed) Published
Abstract [en]

Purpose

To evaluate the feasibility of oral cryotherapy (OC) in children and to investigate if OC reduces the incidence of severe oral mucositis (OM), oral pain, and opioid use in children undergoing hematopoietic stem cell transplantation (HSCT).

Methods

Fifty-three children, 4–17 years old, scheduled for HSCT in Sweden were included and randomized to OC or control using a computer-generated list. OC instructions were to cool the mouth with ice for as long as possible during chemotherapy infusions with an intended time of ≥ 30 min. Feasibility criteria in the OC group were as follows: (1) compliance ≥ 70%; (2) considerable discomfort during OC < 20%; (3) no serious adverse events; and (4) ice administered to all children. Grade of OM and oral pain was recorded daily using the WHO-Oral Toxicity Scale (WHO-OTS), Children’s International Oral Mucositis Evaluation Scale, and Numerical Rating Scale. Use of opioids was collected from the medical records.

Results

Forty-nine children (mean age 10.5 years) were included in analysis (OC = 26, control = 23). The feasibility criteria were not met. Compliance was poor, especially for the younger children, and only 15 children (58%) used OC as instructed. Severe OM (WHO-OTS ≥ 3) was recorded in 26 children (OC = 15, control = 11). OC did not reduce the incidence of severe OM, oral pain, or opioid use.

Conclusion

The feasibility criteria were not met, and the RCT could not show that OC reduces the incidence of severe OM, oral pain, or opioid use in pediatric patients treated with a variety of conditioning regimens for HSCT.

Keywords
Oral mucositis, Children, Hematopoietic stem cell transplantation, Oral cryotherapy, Feasibility
National Category
Pediatrics Cancer and Oncology
Research subject
Pediatrics; Oncology
Identifiers
urn:nbn:se:uu:diva-404273 (URN)10.1007/s00520-019-05258-2 (DOI)
Funder
Swedish Childhood Cancer FoundationSwedish Cancer Society
Available from: 2020-02-17 Created: 2020-02-17 Last updated: 2020-02-18Bibliographically approved
Kohi, T. W., von Essen, L., Masika, G. M., Gottvall, M. & Dol, J. (2019). Cancer-related concerns and needs among young adults and children on cancer treatment in Tanzania: A qualitative study. BMC Cancer, 19(82)
Open this publication in new window or tab >>Cancer-related concerns and needs among young adults and children on cancer treatment in Tanzania: A qualitative study
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2019 (English)In: BMC Cancer, ISSN 1471-2407, E-ISSN 1471-2407, Vol. 19, no 82Article in journal (Refereed) Published
Abstract [en]

Background: Cancer is one of the leading causes of morbidity and mortality worldwide. Seventy percent of deaths of cancer occur in low or middle-income countries, where the resources to provide cancer treatment and care are minimal. Tanzania currently has very inadequate facilities for cancer treatment as there are only five sites, some with limited services; two are in Dar es Salaam and one each in Mwanza, Kilimanjaro and Mbeya that offer cancer treatment. Despite cancer being a prevalent problem in Tanzania, there is a significant shortage of information on the experiences of young people who receive cancer treatment and care. The aim of this study was to explore cancer-related concerns and needs of care and support among young adults and children who are receiving cancer treatment in Dar es Salaam, Tanzania.

Methods: Using an explorative, qualitative design, two focus group discussions (FGDs) with young adults (18 to 25 years) and four FGDs with children (9 to 17 years) were held. Data were transcribed into English and analyzed using content analysis.

Results: Identified concerns included physical effects, emotional effects, financial impacts, poor early care, and poor treatment. Identified needs included the need for improved care in hospital by the staff, need for community support, financial needs, needs for improved cancer care and treatment in the hospitals, and the need for increased education about cancer. Resilience was identified, particularly around hope or faith, having hope to be healed, and receiving good care from staff.

Conclusion: Young adults and children receiving cancer treatment in Tanzania have many needs and concerns. Improvements with regard to the care provided in hospital by the staff, the cancer care and treatment in the hospital, and population-wide education about cancer are necessary to address the identified needs and concerns. Further studies on specific approaches to address the concerns and needs are also warranted.

Keywords
Cancer, children, young adults, cancer treatment, Tanzania
National Category
Pediatrics Cancer and Oncology
Research subject
Pediatrics
Identifiers
urn:nbn:se:uu:diva-371465 (URN)10.1186/s12885-019-5279-z (DOI)000455986800003 ()30654794 (PubMedID)
Available from: 2018-12-20 Created: 2018-12-20 Last updated: 2019-02-05Bibliographically approved
Masika, G. M., Gottvall, M., Kohi, T. W., von Essen, L. & Dol, J. S. (2019). Concerns and Needs of Support Among Guardians of Children on Cancer Treatment in Dar es Salaam: A Qualitative Study. Cancer Nursing
Open this publication in new window or tab >>Concerns and Needs of Support Among Guardians of Children on Cancer Treatment in Dar es Salaam: A Qualitative Study
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2019 (English)In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804Article in journal (Refereed) Epub ahead of print
Abstract [en]

BACKGROUND: Cancer in children in Tanzania is a concerning health issue, yet there is a shortage of information about the experiences of the guardians of children who receive cancer treatment.

OBJECTIVE: To explore concerns and needs of support among guardians of children on cancer treatment in Dar es Salaam, Tanzania.

METHOD: Using a qualitative design, 3 focus group discussions were held with 22 guardians of children aged 9 to 17 years. Guardians were recruited from Muhimbili National Hospital, Dar es Salaam, where their children were receiving cancer treatment. Data were analyzed using thematic content analysis.

RESULTS: Guardians experienced several issues during the initial stages of their child's cancer treatment, including the process of seeking a diagnosis, and experiences with care at the peripheral (regional) hospitals and national hospital. They also shared what they felt would lessen their difficult experiences. Seven themes emerged in this study: financial concerns, emotional concerns, barriers to cancer care, need for improved cancer care, need for information, need for tangible support, and gratitude and hope.

CONCLUSION: Guardians of children with cancer experience challenges during initial stages when seeking a diagnosis and have concerns and needs related to cancer care and treatment.

IMPLICATIONS FOR PRACTICE: Improvements are needed regarding care at regional hospitals, the cancer diagnosis, and the recognition of early signs of cancer and quick referral to diagnostic centers, compassionate caring behaviors by healthcare workers, budgetary support from the government to meet the medication supply demands, and meeting stakeholders' support needs.

Keywords
Concerns, guardians, needs, pediatric cancer, Tanzania
National Category
Nursing
Research subject
Oncology; Pediatrics; Caring Sciences
Identifiers
urn:nbn:se:uu:diva-390727 (URN)10.1097/NCC.0000000000000722 (DOI)31107702 (PubMedID)
Available from: 2019-08-14 Created: 2019-08-14 Last updated: 2020-01-31Bibliographically approved
Pettman, D., O'Mahen, H., Skoog Svanberg, A., von Essen, L., Axfors, C., Blomberg, O. & Woodford, J. (2019). Effectiveness and acceptability of cognitive behavioural therapy based interventions for maternal peripartum depression: A systematic review, meta-analysis and thematic synthesis protocol. BMJ Open, 9(12), Article ID e032659.
Open this publication in new window or tab >>Effectiveness and acceptability of cognitive behavioural therapy based interventions for maternal peripartum depression: A systematic review, meta-analysis and thematic synthesis protocol
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2019 (English)In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 9, no 12, article id e032659Article in journal (Refereed) Published
Abstract [en]

INTRODUCTION:

Peripartum depression is a common mental health difficulty associated with a range of negative impacts for the mother, infant and wider family. This review will examine the effectiveness of cognitive-behavioural therapy (CBT) based interventions for peripartum depression. Secondary aims are to explore the effect of CBT-based interventions targeted at peripartum depression on novel secondary outcomes and moderators potentially associated with effectiveness. To date, there has been little examination of effect on important secondary outcomes (eg, anxiety, stress and parenting), nor clinical and methodological moderators. Further, this review aims to explore the acceptability of CBT-based interventions for women with peripartum depression and examine important adaptations for this population.

METHODS AND ANALYSIS:

Electronic databases (e.g., MEDLINE; ISI Web of Science; CINAHL; CENTRAL; Prospero; EMBASE; ASSIA; PsychINFO; SCOPUS; And Swemed+) will be systematically searched. Database searches will be supplemented by expert contact, reference and citation checking, and grey literature. Primary outcomes of interest will be validated measures of symptoms of depression. A proposed meta-analysis will examine: (1) the overall effectiveness of psychological interventions in improving symptoms of depression (both self-reported and diagnosed major depression) in the peripartum period; (2) the impact of interventions on secondary outcomes (eg, anxiety, stress and parenting); (3) clinical and methodological moderators associated with effectiveness. A thematic synthesis will be conducted on qualitative data exploring the acceptability of CBT-based intervention for postpartum depression including participants' experience and perspectives of the interventions, satisfaction, barriers and facilitators to intervention use, intervention relevance to mothers' situations and suggestions for improvements to tailor interventions to the peripartum client group.

ETHICS AND DISSEMINATION:

Formal ethical approval is not required by the National Ethical Review Board in Sweden as primary data will not be collected. The results will be disseminated through a peer-reviewed publication and inform the development of a new psychological intervention for peripartum depression. This study including protocol development will run from March 2019 to March 2020.

Place, publisher, year, edition, pages
BMJ Publishing Group Ltd, 2019
Keywords
Depression and mood disorders, perinatology, psychiatry
National Category
Psychiatry Clinical Medicine
Research subject
Psychiatry
Identifiers
urn:nbn:se:uu:diva-399073 (URN)10.1136/bmjopen-2019-032659 (DOI)000512773400193 ()31871258 (PubMedID)
Funder
Swedish Research Council, 2009-1093
Available from: 2019-12-12 Created: 2019-12-12 Last updated: 2020-03-27Bibliographically approved
Hovén, E., Hagström, J., Pöder, U., Grönqvist, H. & von Essen, L. (2019). Parents' needs of support following the loss of a child to cancer: a Swedish, prospective, longitudinal, multi-centre study. Acta Oncologica
Open this publication in new window or tab >>Parents' needs of support following the loss of a child to cancer: a Swedish, prospective, longitudinal, multi-centre study
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2019 (English)In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226XArticle in journal (Refereed) Published
Abstract [en]

Introduction: Parents' needs of support following the loss of a child to cancer and whether these needs are met are not fully known. This study aimed to describe parents' needs, opportunity, and benefit of support from healthcare professionals and significant others from shortly after, up to five years after bereavement.

Material and methods: Data were collected at nine months (T5, n = 20), eighteen months (T6, n = 37), and five years after the child's death (T7, n = 38). Parents answered questions via telephone about need, opportunity, and benefit of talking to psychologists, social workers, partners, and friends. Needs were examined in relation to parent and child characteristics, including sex, age, and parent posttraumatic stress symptoms (PTSS).

Results: The proportion reporting a need of support from psychologists varied from 56% and 46% at T5 to 20% and 6% at T7 (mothers and fathers, respectively). All mothers and 90% of fathers reported a need of support from social workers at T5. At T7, the corresponding percentages were 30% and 6%. More mothers than fathers reported a need of support from friends at T7 (p = .001). The proportion reporting a need of support from psychologists, social workers, and friends decreased over time (all p <= .050). Parents reporting a higher level of PTSS were more likely to report a need of support from social workers at T6 (p = .040) and from psychologists (p = .011) and social workers (p = .012) at T7. Opportunities for support from healthcare professionals varied, most reported need of and opportunity for support from significant others. Almost all reported benefit from received support.

Conclusion: Bereaved parents need and benefit of support from healthcare professionals and significant others. Results show a need for improved access to psychosocial services, even at five years post bereavement. Large-scale studies are needed to better understand the associations between parent and child characteristics and support needs.

Place, publisher, year, edition, pages
TAYLOR & FRANCIS LTD, 2019
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:uu:diva-397598 (URN)10.1080/0284186X.2019.1686535 (DOI)000495183800001 ()31702406 (PubMedID)
Funder
Swedish Research Council, K2008-70X-20836-01-3Swedish Research Council, K2011-70X-20836-04-4Swedish Research Council, K2015-99X-20836-08-4Swedish Cancer Society, 2007/1015Swedish Cancer Society, 2010/726Swedish Cancer Society, 2013/580Swedish Cancer Society, 2014/613Swedish Childhood Cancer Foundation, PROJ08/010
Available from: 2019-11-22 Created: 2019-11-22 Last updated: 2020-02-20Bibliographically approved
Carlsson, T., Kukkola, L., Ljungman, L., Hovén, E. & von Essen, L. (2019). Psychological distress in parents of children treated for cancer: An explorative study. PLoS ONE, 14(6), Article ID e0218860.
Open this publication in new window or tab >>Psychological distress in parents of children treated for cancer: An explorative study
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2019 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 14, no 6, article id e0218860Article in journal (Refereed) Published
Abstract [en]

Objective

To explore psychological distress experienced by parents who express a need for psychotherapy after curative treatment for their child's cancer.

Methods

15 parents (eight mothers and seven fathers) of children treated for cancer (median time since end of curative treatment: two years) were recruited via a pediatric oncology center. Each parent was interviewed twice and data was analyzed with inductive latent qualitative content analysis.

Results

Two overarching themes emerged. One theme, An unfamiliar and frightening situation during treatment, portrayed experiences during the treatment period, and included the sub-themes Initial reactions to the uncontrollable situation, Adjustment to the situation, and Focus on supporting the child. Another theme, Emotional struggles after end of curative treatment, portrayed experiences following curative treatment, and included the sub-themes Transitioning back to life as it was before the diagnosis, Emotional scars, Uncontrollable fears and worries of diseases, and New perspectives on life.

Conclusions

Parents of children with cancer experience existential, physical, psychological, and social struggles. They describe an unstable situation after diagnosis and having focused their attention towards protecting their child during treatment. After the end of curative treatment, they experience challenges with transitioning back to life as it was before the diagnosis and dealing with their own emotional scars and fears related to the child's cancer. The findings indicate an unmet need for psychological support among parents of children treated for cancer.

National Category
Psychology Cancer and Oncology
Research subject
Psychology
Identifiers
urn:nbn:se:uu:diva-390743 (URN)10.1371/journal.pone.0218860 (DOI)000484894700047 ()31226159 (PubMedID)
Funder
Swedish Research Council, K2015-99X-20836-08-4Swedish Cancer Society, 140790
Available from: 2019-08-14 Created: 2019-08-14 Last updated: 2019-12-06Bibliographically approved
Ljungman, L., Cernvall, M., Ghaderi, A., Ljungman, G., von Essen, L. & Ljótsson, B. (2018). An open trial of individualized face-to-face cognitive behavior therapy for psychological distress in parents of children after end of treatment for childhood cancer including a cognitive behavioral conceptualization. PeerJ, 6, Article ID e4570.
Open this publication in new window or tab >>An open trial of individualized face-to-face cognitive behavior therapy for psychological distress in parents of children after end of treatment for childhood cancer including a cognitive behavioral conceptualization
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2018 (English)In: PeerJ, ISSN 2167-8359, E-ISSN 2167-8359, Vol. 6, article id e4570Article in journal (Refereed) Published
Abstract [en]

Objective

A subgroup of parents of children who have been treated for childhood cancer report high levels of psychological distress. To date there is no empirically supported psychological treatment targeting cancer-related psychological distress in this population. The aim of the current study was to test the feasibility and preliminarily evaluate the effect of individualized face-to-face cognitive behavior therapy (CBT) for parents of children after the end of treatment for childhood cancer. A secondary aim was to present a cognitive behavioral conceptualization of cancer-related distress for these parents.

Methods

An open trial was conducted where 15 parents of children who had completed successful treatment for cancer three months to five years earlier and who reported psychological distress related to a child’s previous cancer disease were provided CBT at a maximum of 15 sessions. Participants were assessed at baseline, post-intervention, and three-month follow-up using self-reported psychological distress (including posttraumatic stress symptoms (PTSS), depression, and anxiety) and the diagnostic Mini-International Neuropsychiatric Interview. Feasibility outcomes relating to recruitment, data collection, and delivery of the treatment were also examined. Individual case formulations for each participant guided the intervention and these were aggregated and presented in a conceptualization detailing core symptoms and their suggested maintenance mechanisms.

Results

A total of 93% of the participants completed the treatment and all of them completed the follow-up assessment. From baseline to post-assessment, parents reported significant improvements in PTSS, depression, and anxiety with medium to large effect sizes (Cohen’s d = 0.65–0.92). Results were maintained or improved at a three-month follow-up. At baseline, seven (47%) participants fulfilled the diagnostic criteria for major depressive disorder and four (29%) fulfilled the criteria for posttraumatic stress disorder, compared to none at a post-assessment and a follow-up assessment. The resulting cognitive behavioral conceptualization suggests traumatic stress and depression as the core features of distress, and avoidance and inactivity is suggested as the core maintenance mechanisms.

Conclusion

The treatment was feasible and acceptable to the participants. Significant improvements in distress were observed during the study. Overall, results suggest that the psychological treatment for parents of children after end of treatment for childhood cancer used in the current study is promising and should be tested and evaluated in future studies.

National Category
Cancer and Oncology Psychology
Identifiers
urn:nbn:se:uu:diva-349407 (URN)10.7717/peerj.4570 (DOI)000429852600001 ()29666751 (PubMedID)
Funder
Swedish Research Council, VR521-2010-3042; VR521-2014-3337Swedish Cancer Society, CAN2013/580;CAN2014/613
Available from: 2018-04-26 Created: 2018-04-26 Last updated: 2018-06-19Bibliographically approved
Woodford, J., Wikman, A., Einhorn, K., Cernvall, M., Grönqvist, H., Romppala, A. & von Essen, L. (2018). Attitudes and Preferences Toward a Hypothetical Trial of an Internet-Administered Psychological Intervention for Parents of Children Treated for Cancer: Web-Based Survey. Journal of Medical Internet Research, 5(4), Article ID e10085.
Open this publication in new window or tab >>Attitudes and Preferences Toward a Hypothetical Trial of an Internet-Administered Psychological Intervention for Parents of Children Treated for Cancer: Web-Based Survey
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2018 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 5, no 4, article id e10085Article in journal (Refereed) Published
Abstract [en]

Background:

Clinical trials are often challenged with issues of recruitment and retention. Little is known concerning general attitudes and preferences toward trial design and willingness to participate among parents of children treated for cancer. Furthermore, willingness to participate in internet-administered psychological interventions remains unexplored. In this study, we examined attitudes and preferences of the population regarding study procedures for a hypothetical trial of an internet-administered psychological intervention. In addition, differences in the response rate between modes of study invitation and willingness to engage in internet-administered interventions were examined.

Objective:

The primary objective of this study was to examine attitudes and preferences toward participating in an internet-administrated psychological intervention. The secondary objective was to examine the response rates and help-seeking behavior among parents of children treated for cancer.

Methods:

A cross-sectional, Web-based survey was conducted with parents of children who had completed cancer treatment. This Web-based survey examined self-reported emotional distress, prior help-seeking and receipt of psychological support, past research participation, attitudes toward research, preferences concerning recruitment procedures, and attitudes toward different types of trial design.

Results:

Of all the parents invited, 32.0% (112/350) completed the survey, with no difference in response rate between modes of study invitation (χ21=0.6, P=.45). The majority (80/112, 71.4%) of parents responded that they had experienced past emotional distress. Responses indicated high (56/112, 50.0%) or somewhat high trust in research (51/112, 45.5%), and the majority of parents would accept, or maybe accept, internet-administered psychological support if offered (83/112, 74.1%). In addition, responses showed a preference for postal study invitation letters (86/112, 76.8%), sent by a researcher (84/112, 75.0%) with additional study information provided on the Web via text (81/112, 72.3%) and video (66/112, 58.9%). Overall, parents responded that trials utilizing a waiting list control, active alternative treatment control, or a patient-preference design were acceptable.

Conclusions:

Parents of children treated for cancer appear willing to participate in trials examining internet-administered psychological support. Findings of this study will inform the design of a feasibility trial examining internet-administered psychological support for the population.

Keywords
Cancer, Parents, eHealth, Clinical Trial, Depression, Anxiety
National Category
Health Sciences Clinical Medicine Psychology
Research subject
Psychology; Health Care Research
Identifiers
urn:nbn:se:uu:diva-357971 (URN)10.2196/10085 (DOI)000453827700001 ()
Funder
Swedish Research Council, K2015-99X-20836-08-4Swedish Cancer Society, 140790
Available from: 2018-11-29 Created: 2018-11-29 Last updated: 2019-09-10Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-5816-7231

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