ESCCIP: A Psychosocial eHealth Intervention for Parents of Children with Cancer.
Ontology highlight
ABSTRACT: Objective
eHealth interventions may facilitate the dissemination of evidence-based psychosocial interventions to families of children with chronic illnesses, including cancer. This article describes a four-phase, mixed-methods, user-centered approach to the design and evaluation of a novel psychosocial intervention for parents of children with cancer (Electronic Surviving Cancer Competently Intervention Program [eSCCIP]), adapted from an in-person intervention (Surviving Cancer Competently Intervention Program).Methods
Development of eSCCIP involved a multidisciplinary design team of content and eHealth experts. Iterative Think Aloud testing and beta testing with parents of children with cancer was also completed.Results
An intensive, user-centered development and evaluation process was utilized to develop an eHealth intervention for parents of children with cancer. Initial testers rated eSCCIP favorably on questionnaires evaluating user experience and perceptions, and provided positive feedback and suggestions for additional improvement through qualitative interviews.Conclusions
Initial results suggest that eSCCIP may be an acceptable, feasible, and usable intervention for parents of children with cancer. eSCCIP is now ready for a larger pilot evaluation of usability, feasibility, and impact on target outcomes, including the reduction of anxiety and PTSS and improvements in family functioning.
SUBMITTER: Canter KS
PROVIDER: S-EPMC10852099 | biostudies-literature | 2019 Mar
REPOSITORIES: biostudies-literature
Publications
eSCCIP: A Psychosocial eHealth Intervention for Parents of Children with Cancer.
Canter Kimberly S KS Deatrick Janet A JA Hilgart Michelle M MM Myers Jeffrey J Vega Gabriela G Ritterband Lee M LM Kazak Anne E AE
Clinical practice in pediatric psychology 20190301 1
<h4>Objective</h4>eHealth interventions may facilitate the dissemination of evidence-based psychosocial interventions to families of children with chronic illnesses, including cancer. This article describes a four-phase, mixed-methods, user-centered approach to the design and evaluation of a novel psychosocial intervention for parents of children with cancer (Electronic Surviving Cancer Competently Intervention Program [eSCCIP]), adapted from an in-person intervention (Surviving Cancer Competent ...[more]
Similar Datasets
Project description:Parents and caregivers of children with cancer are both resilient and deeply affected by the child's cancer. A systematic review of published research since 1995 identified 138 studies of moderate quality indicating that parent distress increases around diagnosis, then returns to normal levels. Post-traumatic symptoms are common. Distress may be impairing for vulnerable parents and may impact a child's coping and adjustment. Moderate quality evidence and expert consensus informed a strong recommendation for parents and caregivers to receive early and ongoing assessment of their mental health needs with access to appropriate interventions facilitated to optimize parent, child, and family well being.
| S-EPMC5066591 | biostudies-literature
Project description:PurposeResearch has shown that parents of children with cancer exhibit an altered immune profile compared to parents of healthy children, reflective of increased susceptibility to illness. These parents are also at risk for poorer psychosocial outcomes and quality of life. The current study compares peripheral blood cell analyses and psychosocial self-reports from parents of children being treated for cancer (n = 21) to parents of healthy children (n = 30).MethodsA blood sample was drawn from parents to analyze immune profiles. Parents also completed the Perceived Stress Scale (PSS), Medical Outcomes Study Short Form-36 (MOS), and Patient-Reported Outcomes Measurement Information System Short Form v1.0 Emotional Distress-Anxiety 8a, and Emotional Distress-Depression 8a (PROMIS). Mann-Whitney U tests and independent samples t-tests were conducted to examine differences in outcomes between parent groups.ResultsParents of children with cancer exhibited higher monocyte percentages in their peripheral blood compared to peers with healthy children. Parents of children with cancer also reported poorer psychosocial outcomes: higher perceived stress, higher anxiety and depression symptoms, more role disability resulting from emotional problems, poorer general and mental health, and poorer social functioning.ConclusionThese findings support research that has shown a direct effect of chronic stress on the immune system. Symptoms reported by parents of children with cancer indicate unmet psychosocial needs that could potentially affect long-term health. Given the central role of parents in their children's cancer care, it is compelling to address and work to improve parent immunological and psychosocial well-being.
| S-EPMC9833860 | biostudies-literature
Project description:BackgroundThe psychosocial needs and risks of children with cancer and their families are well-documented including increased risk of parental distress, posttraumatic stress, and anxiety. There is a critical need to provide evidence-based psychosocial care to parents and caregivers of children with cancer. Digital health interventions are important to address many barriers to in-person intervention delivery but are not widely used in pediatric psychosocial cancer care. The COVID-19 pandemic has reinforced the need for flexible, acceptable, and accessible psychosocial digital health interventions. The Electronic Surviving Cancer Competently Intervention Program (eSCCIP) is an innovative digital health intervention for parents and caregivers of children with cancer, delivered through a combination of self-guided web-based content and supplemented by 3 telehealth follow-up sessions with a trained telehealth guide. A Spanish language adaptation of eSCCIP, El Programa Electronico de Intervencion para Superar Cancer Competentemente (eSCCIP-SP), has been developed. The self-guided web-based cores of eSCCIP/eSCCIP-SP are a mix of didactic video content, multifamily video discussion groups featuring parents of children with cancer, and hands-on web-based activities.ObjectiveThe objective of this study is to test eSCCIP/eSCCIP-SP in a multisite randomized controlled trial, compared to an internet-based education control condition consisting of information specifically focused on concerns relevant to parents and caregivers of children with cancer.MethodsUsing a randomized controlled clinical trial design, 350 eligible parents and caregivers of children with cancer will be randomly assigned to the intervention (eSCCIP/eSCCIP-SP) or an education control condition. Data will be collected at 3 time points: preintervention (prior to randomization), immediately post intervention (after 6 weeks), and at a 3-month follow-up (from baseline). Participants randomized to either condition will receive study material (eSCCIP/eSCCIP-SP intervention or education control website) in English or Spanish, based on the primary language spoken in the home and participant preference.ResultsThe primary study end point is a reduction in acute distress from baseline to postintervention, with secondary end points focused on reductions in symptoms of posttraumatic stress and anxiety, and improvements in coping self-efficacy and cognitive coping. An additional exploratory aim will be focused on implementation strategies and potential costs and cost-savings of eSCCIP/eSCCIP-SP, laying the groundwork for future trials focused on dissemination and implementation, stepped-care models, and intervention refinement.ConclusionsThis trial will provide necessary data to evaluate the efficacy of eSCCIP/eSCCIP-SP. This intervention has the potential to be an easily scalable and highly impactful psychosocial treatment option for parents and caregivers of children with cancer.Trial registrationClinicalTrials.gov NCT05294302; https://clinicaltrials.gov/ct2/show/NCT05294302.International registered report identifier (irrid)PRR1-10.2196/46339.
| S-EPMC10276316 | biostudies-literature
Project description:The aim of this paper is to investigate the impact of an extended lifespan of parents on middle-aged women and men from a demographic, sociological and psychological perspective. Based on Swiss data, three main research questions are investigated and discussed in three different sections: (a) How far has the common lifespan of children and parents been extended and how does it affect kinship structures? (b) How accurate is the term of "sandwich generation" in this context? (c) Which are the psychological concomitants-in terms of filial maturity-of being reinvolved with one's old parents in mid-life? The demographic analyses illustrate a considerable extension of common lifespan of children and parents. Combined with low fertility rates this results in rapidly increasing parent-support ratios. A sociological approach analysing the concept of "sandwich generation" indicates that, for women, a new kind of double burden (professional work and family care) is more widespread than being 'sandwiched' between the youngest and the oldest generation. Finally, in the third section, results are reported from a longitudinal study of middle-aged persons living in different social contexts (such as living or not living with a partner and/or children) on the intrapsychic concomitants of becoming reinvolved with one's parents. The response patterns reveal a considerable intergenerational ambivalence. Although the possibility to help old parents depends heavily on living context and is a question of available resources, the willingness to help is also closely related to psychological variables such as attachment.
| S-EPMC5546344 | biostudies-other
Project description:PurposeAlthough parents with cancer report that talking with their children about cancer and dying is distressing, accessible support is rare. We assessed the feasibility, acceptability, and preliminary effects of Families Addressing Cancer Together (FACT), a web-based, tailored psychosocial intervention to help parents talk about their cancer with their children.MethodsThis pilot study used a pre-posttest design. Eligible participants were parents with new or metastatic solid tumors who had minor (ages 3-18) children. Participants who completed baseline assessments received online access to FACT. We assessed feasibility through enrollment and retention rates and reasons for study refusal. Acceptability was evaluated by satisfaction ratings. We examined participants' selection of intervention content and preliminary effects on communication self-efficacy and other psychosocial outcomes (depression and anxiety symptoms, health-related quality of life, family functioning) at 2- and 12-week post-intervention.ResultsOf 68 parents we approached, 53 (78%) agreed to participate. Forty-six parents completed baseline assessments and received the FACT intervention. Of the 46 participants, 35 (76%) completed 2-week assessments, and 25 (54%) completed 12-week assessments. Parents reported that FACT was helpful (90%), relevant (95%), and easy to understand (100%). Parents' psychosocial outcomes did not significantly improve post-intervention, but parents endorsed less worry about talking with their child (46% vs. 37%) and reductions in the number of communication concerns (3.4 to 1.8).ConclusionThe FACT intervention was feasible, acceptable, and has potential to address communication concerns of parents with cancer. A randomized trial is needed to test its efficacy in improving psychological and parenting outcomes.Trial registrationThis study was IRB-approved and registered with clinicaltrials.gov (NCT04342871).
| S-EPMC9530016 | biostudies-literature
Project description:ObjectiveTo evaluate the efficacy of an online psychosocial group intervention for parents of children with a chronic illness, in terms of anxiety and depression, and disease-related coping skills.MethodsParents (N = 73) participated in a parallel multicenter randomized controlled trial comparing an intervention group to a waitlist control group. In the group intervention Op Koers Online (English: On Track Online) parents learned how to use adaptive coping strategies taught with cognitive behavioral therapy and acceptance and commitment therapy techniques. Assessments (online questionnaires) took place at baseline (T0), 6-months (T1), and 12-months (T2) follow-up. Mixed-model analyses were performed to test the difference in change in outcomes between intervention (N = 34) and waitlist control group (N = 33).ResultsWhen compared with the waitlist control group, the intervention had a significant positive effect (p < .05) on changes in anxiety, depression, and total score T1 versus T0 (β = -.47 to -.51) and T2 versus T0 (β = -.39 to -.46), the coping skills open communication, relaxation, social support, acceptance, predictive control (β = .42-.88) and helplessness (β = -.47) T1 versus T0 and relaxation and positive thinking T2 versus T0 (β = .42-.53).ConclusionsParental anxiety and depression decreased, and use of adaptive coping skills improved after the intervention. The online character, the focus on parents themselves instead of on their child and the possibility for parents of children with rare illnesses to participate, are innovative and unique aspects of Op Koers Online for parents. The next step is to implement the intervention in clinical practice.
| S-EPMC7896276 | biostudies-literature
Project description:PurposeThis study aimed to (1) develop TOGETHER-YA, an e-Health-delivered and group-based health-related quality of life (HRQOL) intervention for young adult (YA) cancer survivors aged 18-39 (Part 1), and (2) determine its initial feasibility and acceptability in a single-arm pilot trial (Part 2).MethodsTOGETHER-YA is a manualized, 10-week intervention for YA survivors that includes elements of relaxation training, cognitive-behavioral therapy, and health education. In Part 1, content was adapted from existing evidence-based interventions with feedback from YAs (N = 22) in four iterative focus groups. In Part 2, YA survivors (N = 11) participated in a single-arm pilot trial of TOGETHER-YA. Intervention groups were led by a trained facilitator over videoconference. Primary outcomes were feasibility (i.e., recruitment, session attendance, retention) and acceptability (i.e., participant satisfaction).ResultsFocus groups reacted positively to TOGETHER-YA and provided actionable recommendations for enhancing its relevance and acceptability, which were implemented. In initial testing, all feasibility and acceptability benchmarks were met; 58% of eligible YAs were recruited, participants attended M = 6 intervention sessions (SD = 3), and 82% of participants were retained post-intervention. On average, participants "agreed" to "strongly agreed" with positive statements about the weekly sessions and the overall program.ConclusionTOGETHER-YA was developed in collaboration with YA cancer survivors and found to be feasible and acceptable in initial testing. TOGETHER-YA is the first HRQOL intervention for a broad range of YA survivors that is eHealth-delivered for convenience and group-based for peer support. Future large-scale trials should test its efficacy for improving HRQOL.Trial registrationNCT05048316, September 17, 2021; NCT05054569, September 23, 2021.
| S-EPMC9722531 | biostudies-literature
Project description:UnlabelledTherapist-guided eHealth interventions have been shown to engage users more effectively and achieve better outcomes than self-guided interventions when addressing psychological symptoms. Building on this evidence, this viewpoint aimed to describe the adaptation of iConquerFear, a self-guided eHealth intervention targeting fear of cancer recurrence, into a therapist-guided version (TG-iConquerFear) tailored specifically for survivors of colorectal cancer (CRC). The goal was to optimize patient outcomes while minimizing the need for extensive resources. The adaptation process followed the Information System research framework, which facilitated a systematic integration of knowledge and iterative testing. Drawing on insights from the original iConquerFear development, as well as feedback from end users, oncologists, and therapists, we began by identifying areas for improvement. These insights formed the foundation for the first design cycle. Initial internal testing revealed the need for several adjustments to enhance the intervention. While the core concept of iConquerFear remained unchanged, we made significant modifications to improve access by optimizing the platform for mobile devices, to support adherence by expanding the exercises, and to equip therapists with tools such as reflective questions and a monitoring control panel. External field testing with 5 survivors of CRC provided further validation. Participants reported a high level of acceptability, and their feedback guided additional minor points to consider incorporating in future versions. This study illustrates how a self-guided eHealth intervention can be successfully adapted into a therapist-guided format for fear of cancer recurrence, tailored to meet the needs of survivors of CRC. The described approach serves as a valuable framework for integrating therapist guidance into similar interventions, ensuring their relevance and effectiveness for targeted populations.
| S-EPMC11900901 | biostudies-literature
Project description:Background Parents of autistic children experience increased levels of caregiver strain and adverse mental health outcomes, even in comparison to parents of children with other neurodevelopmental disabilities. Previous studies have largely attributed these increased levels of mental health concerns to their child behavioral concerns and autism symptomatology, but less attention has been given to other potential child factors, such as child adaptive functioning. Additionally, little is known about potential protective factors, such as parents’ emotion regulation (ER) abilities, that may ameliorate the experience of caregiver strain, anxiety, and depression. Objective The current study examined the impact of child characteristics (restricted and repetitive behaviors, adaptive functioning and behavioral concerns) on parent mental health outcomes (caregiver strain, anxiety, depression and wellbeing). Additionally, we explore parents’ ER abilities as a moderator of the impact of child characteristic on parents’ mental health outcomes. Results Results of linear mixed effect models indicated a significant relationship between parents’ ER abilities and all four parent outcomes. Additionally, children’s adaptive functioning abilities and repetitive behaviors (RRBs) were significant predictors of caregiving strain. Parents’ ER abilities were a significant moderator of the effect of children’s repetitive behaviors and adaptive functioning challenges on caregiver strain, such that better ER abilities mitigated the impact of child clinical factors on caregiver strain. Finally, a significant difference was detected for mothers’ and fathers’ mental health, with mothers reporting higher caregiver strain, and more symptoms of anxiety and depression than did fathers. Conclusion This study leveraged a large sample of autistic children and their biological parents to examine the relationship between children’s clinical characteristics and parents’ psychological wellbeing. Results indicate that, although parents of autistic children do experience high rates of internalizing mental health concerns that relate to child adaptive functioning and RRBs, parent ER abilities act as a protective factor against parents’ adverse mental health outcomes. Further, mothers in our sample reported significantly higher rates of depression, anxiety, and caregiver strain, as compared with fathers.
| S-EPMC10226532 | biostudies-literature
Project description:BACKGROUND:Dyadic psychosocial interventions have been found beneficial both for people coping with mental or physical health conditions as well as their family members and friends who provide them with support. Delivering these interventions via electronic health (eHealth) may help increase their scalability. OBJECTIVE:This scoping review aimed to provide the first comprehensive overview of dyadic eHealth interventions for individuals of all ages affected by mental or physical illness and their family members or friends who support them. The goal was to understand how dyadic eHealth interventions have been used and to highlight areas of research needed to advance dyadic eHealth intervention development and dissemination. METHODS:A comprehensive electronic literature search of PubMed, EMBASE, Cochrane, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO was conducted for articles published in the English language through March 2019. Eligible records described a psychosocial eHealth intervention that intervened with both care recipients and their support person. RESULTS:A total of 7113 records were reviewed of which 101 met eligibility criteria. There were 52 unique dyadic eHealth interventions identified, which were tested across 73 different trials. Of the unique interventions, 33 were conducted among dyads of children and their supporting parent, 1 was conducted with an adolescent-young adult care recipient population, and the remaining 18 were conducted among adult dyads. Interventions targeting pediatric dyads most commonly addressed a mental health condition (n=10); interventions targeting adult dyads most commonly addressed cancer (n=9). More than three-fourths of interventions (n=40) required some human support from research staff or clinicians. Most studies (n=64) specified one or more primary outcomes for care recipients, whereas less than one-fourth (n=22) specified primary outcomes for support persons. Where specified, primary outcomes were most commonly self-reported psychosocial or health factors for both care recipients (n=43) and support persons (n=18). Results of the dyadic eHealth intervention tended to be positive for care recipients, but evidence of effects for support persons was limited because of few studies specifying primary outcomes for supporters. Trials of dyadic eHealth interventions were most commonly randomized controlled trials (RCTs; n=44), and RCTs most commonly compared the dyadic eHealth intervention to usual care alone (n=22). CONCLUSIONS:This first comprehensive review of dyadic eHealth interventions demonstrates that there is substantial, diverse, and growing literature supporting this interventional approach. However, several significant gaps were identified. Few studies were designed to evaluate the unique effects of dyadic interventions relative to individual interventions. There was also limited assessment and reporting of outcomes for support persons, and there were no interventions meeting our eligibility criteria specifically targeting the needs of older adult dyads. Findings highlight areas of research opportunities for developing dyadic eHealth interventions for novel populations and for increasing access to dyadic care.
| S-EPMC7081137 | biostudies-literature