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1.	Hagström, Josefin, et al. (författare) Opt-out rates and reasons for non-participation in a single-arm feasibility trial (ENGAGE) of a guided internet-administered CBT-based intervention for parents of children treated for cancer : A nested cross-sectional survey 2022 Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 12:4 Tidskriftsartikel (refereegranskat)abstract Objectives Difficulties with recruitment into clinical trials are common. An opt-out recruitment strategy, whereby potential participants can decline further contact about a study (opt-out), and non-responders are contacted, may facilitate participation. Primary objectives examined opt-out and consent rates, mode and time point of opt-out, and sociodemographic characteristics of those who opted out versus those who chose to participate in a single-arm feasibility trial (ENGAGE) of a guided, internet-administered, cognitive–behavioural therapy-based intervention for parents of children treated for cancer. Secondary objectives examined reasons for non-participation.Design A cross-sectional survey nested within theENGAGE feasibility trial.Setting The intervention was delivered from Uppsala University, with parents located throughout Sweden.Participants Potential participants were recruited 3 months–5 years following their child ending treatment for cancer and were identified via their personal identification number (via the Swedish Childhood Cancer Registry and Swedish Tax Agency) and invited via postal invitation packs and could opt out via post, online, telephone or email. Those who did not opt out or consent, within 4 weeks, received up to five telephone calls and/or one postal reminder.Results Of 509 invited, 164 (32.2%) opted out, 78 (47.6%) via post, 53 (32.3%) via telephone, 24 (14.6%) online, and 6 (3.7%) via email, 88 (53.7%) opted out after at least one telephone call and/or postal reminder. There was a trend for parents with lower educational levels to opt out. No need of psychological support, lack of time, and no interest in internet-administered self-help were frequently reported reasons for non-participation.Conclusions Results emphasise the importance of using different opt-out modes and suggest future research should consider how to widen study participation for parents with lower education levels. Self-identifying a need for psychological support and the acceptability of internet-administered self-help are important factors for participation and should be considered in future research to increase recruitment.
2.	Kamsvåg, Tove, 1986-, et al. (författare) Prevention of oral mucositis with cryotherapy in children undergoing hematopoietic stem cell transplantations-a feasibility study and randomized controlled trial 2020 Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. Tidskriftsartikel (refereegranskat)abstract 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.
3.	Ander, Malin, 1983-, et al. (författare) A preliminary open trial of individualised cognitive behavioural therapy for young survivors of cancer during adolescence: initial findings and conceptualisation of distress Annan publikation (övrigt vetenskapligt/konstnärligt)abstract Objective: A subgroup of adolescent and young adult (AYA) survivors of cancer in adolescence report high levels of psychological distress. Empirically-supported treatments tailored to the concerns experienced by this population are lacking. The aims of this study were to (1) conduct a preliminary evaluation of an individualised cognitive behavioural therapy (CBT) intervention for adolescent and young adult (AYA) survivors of cancer during adolescence and (2) identify and conceptualise cancer-related psychological concerns using cognitive-behavioural theory.Methods: A single-arm trial in which ten AYA (17-25 years) survivors of cancer during adolescence were offered up to 15 sessions of individualised CBT guided by behavioural case formulations was undertaken. Clinical outcomes were assessed at baseline, post-treatment, and three months follow-up. Before commencing treatment, two individual qualitative interviews were conducted with each participant. Analysis of cancer-related concerns was guided by qualitative framework analysis and theoretical thematic analysis, and cognitive-behavioural theory was used to inform identification of themes.Results: Ten of 201 potential participants invited to participate were included resulting in an overall participation rate of 5%. Nine participants completed treatment and eight completed the follow-up assessment. The majority of concerns reported were cancer-related and conceptualised as social avoidance, fear and avoidance of emotions and bodily symptoms, low mood and unbalance in activity, and worry and rumination.Conclusions: Given significant difficulties with recruitment, further research is needed to examine barriers and the impact of mental health literacy and stigma on help seeking in the AYA cancer survivor population. Internet-administered CBT self-help tailored towards the main presenting concerns of AYA cancer survivors may be a promising solution.
4.	Ander, Malin, et al. (författare) Exploration of psychological distress experienced by survivors of adolescent cancer reporting a need for psychological support 2018 Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 13:4 Tidskriftsartikel (refereegranskat)abstract Objective In this qualitative study, we aimed to provide an in-depth exploration of cancer-related psychological distress experienced by young survivors of cancer during adolescence reporting a need for psychological support.MethodsTwo individual interviews were held with ten young survivors of cancer diagnosed in adolescence. The interviews were audio-recorded and transcribed verbatim. Analysis followed the guidelines for inductive qualitative manifest content analysis.ResultsThe survivors described distress experienced during and after the end of treatment. Five categories comprising 14 subcategories were generated. The categories included: A tough treatment, Marked and hindered, Not feeling good enough, Struggling with the fragility of life, and finally, An ongoing battle with emotions.Conclusion Young survivors of adolescent cancer reporting a need for psychological support described feeling physically, socially, and mentally marked by the cancer experience. They struggled with powerlessness, insecurity, social disconnection, loneliness, and feelings of being unimportant and a failure, and had difficulties understanding and managing their experiences. These concerns should be addressed in psychological treatments for the population irrespective of which approach or model is used to understand survivors’ difficulties. A transdiagnostic approach targeting processes that underpin different manifestations of distress may be effective.
5.	Ander, Malin, et al. (författare) Guided Internet-Administered Self-Help to Reduce Symptoms Of Anxiety and Depression Among Adolescents and Young Adults Diagnosed With Cancer During Adolescence (U-CARE: YoungCan) : study protocol for a feasibility trial 2017 Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 7:1 Tidskriftsartikel (refereegranskat)abstract Introduction A subgroup of adolescents and young adults diagnosed with cancer during adolescence reports elevated levels of anxiety and depressive symptoms and unmet needs for psychological support. Evidence-based psychological treatments tailored for this population are lacking. This protocol describes a feasibility study of a guided-internet-administered self-help programme (YoungCan) primarily targeting symptoms of anxiety and depression among young persons diagnosed with cancer during adolescence and of the planned study procedures for a future controlled trial. Methods/analysis The study is an uncontrolled feasibility trial with a pre-post and 3-month follow-up design. Potential participants aged 15-25years, diagnosed with cancer during adolescence, will be identified via the Swedish Childhood Cancer Registry. 30 participants will be included. Participants will receive YoungCan, a 12-week therapist-guided, internet-administered self-help programme consisting primarily of cognitive-behavioural therapy organised into individually assigned modules targeting depressive symptoms, worry and anxiety, body dissatisfaction and post-traumatic stress. Interactive peer support and psychoeducative functions are also available. Feasibility outcomes include: recruitment and eligibility criteria; data collection; attrition; resources needed to complete the study and programme; safety procedures; participants' and therapists' adherence to the programme; and participants' acceptability of the programme and study methodology. Additionally, mechanisms of impact will be explored and data regarding symptoms of anxiety, depression, post-traumatic stress, body dissatisfaction, reactions to social interactions, quality of life, axis I diagnoses according to the Mini International Neuropsychiatric Interview and healthcare service use will be collected. Exploratory analyses of changes in targeted outcomes will be conducted. Ethics/dissemination This feasibility protocol was approved by the Regional Ethical Review Board in Uppsala, Sweden (ref: 2016/210). Findings will be disseminated to relevant research, clinical, health service and patient communities through publications in peer-reviewed and popular science journals and presentations at scientific and clinical conferences.
6.	Ander, Malin, 1983-, et al. (författare) U-CARE: UngaKan : Ett internet-administrerat guidat självhjälsprogram för unga som diagnosticerats med cancer under tonåren 2017 Annan publikation (populärvet., debatt m.m.)
7.	Andriopoulos, Thanos, et al. (författare) Commencement of and Retention in Web-Based Interventions and Response to Prompts and Reminders : Longitudinal Observational Study Based on Two Randomized Controlled Trials 2021 Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 23:3 Tidskriftsartikel (refereegranskat)abstract Background: Web-based interventions are effective for several psychological problems. However, recruitment, adherence, and missing data are challenges when evaluating these interventions. Objective: This study aimed to describe the use patterns during the commencement phase, possible retention patterns (continuation of data provision), and responses to prompts and reminders among participants in 2 randomized controlled trials (RCTs) evaluating web-based interventions. Methods: Data on use patterns logged in 2 RCTs aiming to reduce symptoms of anxiety and depression among adult patients recently diagnosed with cancer (AdultCan RCT) and patients with a recent myocardial infarction (Heart RCT) were analyzed. The web-based intervention in the AdultCan trial consisted of unguided self-help and psychoeducation and that in the Heart trial consisted of therapist-supported cognitive behavioral therapy. In total, 2360 participants' use patterns at first log-in, including data collection at baseline (ie, commencement) and at 2 follow-ups, were analyzed. Both the intervention and comparison groups were analyzed. Results: At commencement, 70.85% (909/1283) and 86.82% (935/1077) of the participants in AdultCan and Heart RCTs, respectively, logged in and completed baseline data collection after receiving a welcome email with log-in credentials. The median duration of the first log-in was 44 minutes and 38 minutes in AdultCan and Heart RCTs, respectively. Slightly less than half of the participants' first log-ins were completed outside standard office hours. More than 80% (92/114 and 103/111) of the participants in both trials explored the intervention within 2 weeks of being randomized to the treatment group, with a median duration of 7 minutes and 47 minutes in AdultCan and Heart RCTs, respectively. There was a significant association between intervention exploration time during the first 2 weeks and retention in the Heart trial but not in the AdultCan trial. However, the control group was most likely to retain and provide complete follow-up data. Across the 3 time points of data collection explored in this study, the proportion of participants responding to all questionnaires within 1 week from the prompt, without a reminder, varied between 35.45% (413/1165) and 66.3% (112/169). After 2 reminders, up to 97.6% (165/169) of the participants responded. Conclusions: Most participants in both RCTs completed the baseline questionnaires within 1 week of receiving the welcome email. Approximately half of them answered questions at baseline data collection outside office hours, suggesting that the time flexibility inherent in web-based interventions contributes to commencement and use. In contrast to what was expected, the intervention groups generally had lower completion rates than the comparison groups. About half of the participants completed the questionnaires without a reminder, but thereafter, reminders contributed to both baseline and follow-up retention, suggesting they were effective. Strategies to increase commencement of and retention in eHealth interventions are important for the future development of effective interventions and relevant research.
8.	Blomberg, Oscar, et al. (författare) Adaptation of a guided low-intensity behavioral activation intervention for people with dementia in Sweden : a qualitative study exploring the needs and preferences of key stakeholders 2024 Ingår i: BMC Geriatrics. - : Springer. - 1471-2318. ; 24:113 Tidskriftsartikel (refereegranskat)abstract BackgroundDespite depression being prevalent in people with dementia, contributing to negative health outcomes and placing increased burden on individuals and family members, access to psychological interventions is limited. A potential solution is guided low-intensity behavioral activation, supported by informal caregivers and guided by healthcare professionals. However, it is necessary to adapt interventions to meet the needs and preferences of key stakeholders to enhance acceptability and relevance. Study objectives were to: (1) explore needs and preferences concerning the content and delivery model of the guided low-intensity behavioral activation intervention; and (2) adapt the intervention to ensure cultural appropriateness, relevancy, and acceptability to people with dementia and their caregivers in Sweden.MethodsSemi-structured interviews and focus group discussions were conducted with key stakeholders, including healthcare professionals (n = 18), community stakeholders (n = 7), people with dementia (n = 8), and informal caregivers (n = 19). A draft of the written low-intensity behavioral activation intervention and a description of the proposed intervention delivery model were provided to participants. Open-ended questions explored the perceived relevance of the intervention, alongside needs and preferences concerning content and delivery. A manifest content analysis approach was adopted.ResultsContent analysis resulted in three categories: Content, Delivery procedures, and Illness trajectory. Results highlighted a need to consider the intervention Content via increased cultural adaptation to the Swedish context, and increasing the inclusiveness of intervention content. Delivery procedures were identified as needing to be flexible given the unpredictable nature of caring for people with dementia, with the provision of additional guidance to informal caregivers supporting the intervention. Illness trajectory was viewed as essential to consider, with the intervention regarded as suitable for those early in the dementia trajectory, alongside a need to reduce workbook text to minimize burden given dementia symptomology.ConclusionsThe intervention and proposed delivery model were generally well received by all stakeholders. We were able to identify key adaptations to enhance cultural appropriateness, relevancy, and acceptability for a currently neglected population. Results will inform a feasibility study to explore the feasibility and acceptability of the intervention and study procedures to inform the design of a future superiority randomized controlled trial.
9.	Blomberg, Oscar, et al. (författare) Development of a self-help behavioural activation intervention INVOLVERA for people with dementia : A qualitative study 2023 Ingår i: Alzheimer's & Dementia. - 1552-5260 .- 1552-5279. ; 19:S19 Konferensbidrag (refereegranskat)
10.	Bockgård, Gustav, docent, et al. (författare) Collaborative Interpretation of Researcher-Generated Photo-Elicitation Findings : Insights From Women With Lived Experience of Homelessness 2024 Ingår i: Qualitative Health Research. - : Sage Publications. - 1049-7323 .- 1552-7557. ; 34:7, s. 676-690 Tidskriftsartikel (refereegranskat)abstract Interviews with individuals experiencing homelessness can be challenging for various reasons, including mental and physical health issues, substance use, and negative experiences with authority figures. Researchers have used photos to facilitate communication and empower participants during data collection. We analyzed data from a previous study to explore the use of researcher-generated photos during interviews about health with 13 women experiencing homelessness. Conversation analysis revealed clear patterns regarding the use of the photos during the interviews. The photos were referred to 118 times over the total interview length, 6 hours and 23 minutes, with the interviewer making 62% of the referrals and the women accounting for 38%. Fifty-nine percent of the referrals occurred within the first 5 minutes of the interviews. The women used the photos to trigger associations and emotions, to describe photo content, or in a minor role during the interview. Interpretations from an advisory board of six women with lived experiences of homelessness suggested that the photos did not engage participants as intended, highlighting the importance of considering participants’ perspectives when designing photo-elicitation methods. The feedback also provided valuable insights into interview locations and incentives in research that may have influenced the women’s willingness to use the photos. This study emphasizes the importance of understanding the complexity of choosing researcher-generated photos in interviews with underserved, hard-to-reach populations.
11.	Boman, Krister K., et al. (författare) Generalizing approaches to surveillance for complex social outcomes in broad‐range patient populations— : The cost in terms of lost information and subgroup utility 2022 Ingår i: Cancer. - : John Wiley & Sons. - 0008-543X .- 1097-0142. ; 128:13, s. 2400-2404 Tidskriftsartikel (refereegranskat)abstract Complex social outcomes, including those related to education and employment, depend on compound combinations of background factors that are significantly different for childhood and adult cancers. Medical and psychosocial prerequisites related to the age at cancer diagnosis and treatment require surveillance for complex social outcomes that meets the particularized needs of corresponding patient subgroups.
12.	Brantnell, Anders, 1983-, et al. (författare) Barriers to and Facilitators of the Implementation of Digital Mental Health Interventions as Perceived by Primary Care Decision Makers : Content Analysis of Structured Open-Ended Survey Data 2023 Ingår i: JMIR Human Factors. - : JMIR Publications. - 2292-9495. ; 10 Tidskriftsartikel (refereegranskat)abstract Background: Digital mental health represents a way to increase access to evidence-based psychological support. However, the implementation of digital mental health in routine health care practice is limited, with few studies focusing on implementation. Accordingly, there is a need to better understand the barriers to and facilitators of implementing digital mental health. Existing studies have mainly focused on the viewpoints of patients and health professionals. Currently, there are few studies about barriers and facilitators from the perspective of primary care decision makers, that is, the persons responsible for deciding whether a given digital mental health intervention should be implemented in a primary care organization.Objective: The objectives were to identify and describe barriers to and facilitators of the implementation of digital mental health as perceived by primary care decision makers, evaluate the relative importance of different barriers and facilitators, and compare barriers and facilitators reported by primary care decision makers who have versus have not implemented digital mental health interventions.Methods: A web-based self-report survey was conducted with primary care decision makers responsible for the implementation of digital mental health in primary care organizations in Sweden. Answers to 2 open-ended questions about barriers and facilitators were analyzed through summative and deductive content analysis.Results: The survey was completed by 284 primary care decision makers—59 (20.8%) decision makers representing implementers (ie, organizations that offered digital mental health interventions) and 225 (79.2%) respondents representing nonimplementers (ie, organizations that did not offer digital mental health interventions). Overall, 90% (53/59) of the implementers and 98.7% (222/225) of the nonimplementers identified barriers, and 97% (57/59) of the implementers and 93.3% (210/225) of the nonimplementers identified facilitators. Altogether, 29 barriers and 20 facilitators of implementation were identified related to guidelines; patients; health professionals; incentives and resources; capacity for organizational change; and social, political, and legal factors. The most prevalent barriers were related to incentives and resources, whereas the most prevalent facilitators were related to the capacity for organizational change.Conclusions: A number of barriers and facilitators were identified that could influence the implementation of digital mental health from the perspective of primary care decision makers. Implementers and nonimplementers identified many common barriers and facilitators, but they differ in terms of certain barriers and facilitators. Common and differing barriers and facilitators identified by implementers and nonimplementers may be important to address when planning for the implementation of digital mental health interventions. For instance, financial incentives and disincentives (eg, increased costs) are the most frequently mentioned barrier and facilitator, respectively, by nonimplementers, but not by implementers. One way to facilitate implementation could be to provide more information to nonimplementers about the actual costs related to the implementation of digital mental health.
13.	Brantnell, Anders, 1983-, et al. (författare) Views of Implementers and Nonimplementers of Internet-Administered Cognitive Behavioral Therapy for Depression and Anxiety : Survey of Primary Care Decision Makers in Sweden 2020 Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 22:8 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Internet-administered cognitive behavioral therapy (ICBT) has been demonstrated to be an effective intervention for adults with depression and/or anxiety and is recommended in national guidelines for provision within Swedish primary care. However, the number and type of organizations that have implemented ICBT within primary care in Sweden is currently unclear. Further, there is a lack of knowledge concerning barriers and facilitators to ICBT implementation.OBJECTIVE: The two primary objectives were to identify and describe primary care organizations providing ICBT in Sweden and compare decision makers' (ie, directors of primary care organizations) views on barriers and facilitators to implementation of ICBT among ICBT implementers (ie, organizations that offered ICBT) and nonimplementers (ie, organizations that did not offer ICBT).METHODS: An online survey based on a checklist for identifying barriers and facilitators to implementation was developed and made accessible to decision makers from all primary care organizations in Sweden. The survey consisted of background questions (eg, provision of ICBT and number of persons working with ICBT) and barriers and facilitators relating to the following categories: users, therapists, ICBT programs, organizations, and wider society.RESULTS: The participation rate was 35.75% (404/1130). The majority (250/404, 61.8%) of participants were health care center directors and had backgrounds in nursing. Altogether, 89.8% (363/404) of the participating organizations provided CBT. A minority (83/404, 20.5%) of organizations offered ICBT. Most professionals delivering ICBT were psychologists (67/83, 80%) and social workers (31/83, 37%). The majority (61/83, 73%) of organizations had 1 to 2 persons delivering ICBT interventions. The number of patients treated with ICBT during the last 12 months was 1 to 10 in 65% (54/83) of the organizations, ranging between 1 and 400 treated patients across the whole sample. There were 9 significant (P<.05) differences out of 37 possible between implementers and nonimplementers. For example, more implementers (48/51, 94%) than nonimplementers (107/139, 76.9%) perceived few technical problems (P<.001), and more implementers (53/77, 68%) than nonimplementers (103/215, 47.9%) considered that their organization has resources to offer ICBT programs (P<.001).CONCLUSIONS: Despite research demonstrating the effectiveness of ICBT for depression and anxiety and national guidelines recommending its use, ICBT is implemented in few primary care organizations in Sweden. Several interesting differences between implementers and nonimplementers were identified, which may help inform interventions focusing on facilitating the implementation of ICBT.
14.	Carlsson, Tommy, et al. (författare) Psychological distress in parents of children treated for cancer : An explorative study 2019 Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 14:6 Tidskriftsartikel (refereegranskat)abstract ObjectiveTo explore psychological distress experienced by parents who express a need for psychotherapy after curative treatment for their child's cancer.Methods15 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.ResultsTwo 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.ConclusionsParents 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.
15.	Cernvall, Martin, 1980-, et al. (författare) Posttraumatic stress and attentional bias towards cancer-related stimuli in parents of children recently diagnosed with cancer 2016 Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 11:4 Tidskriftsartikel (refereegranskat)abstract Objectives: To investigate whether posttraumatic stress symptoms (PTSS) are related to attentional bias towards cancer-related stimuli among parents of children recently diagnosed with cancer.Methods: Sixty-two parents completed questionnaires measuring PTSS, depression, and anxiety and the emotional Stroop task via the Internet. The emotional Stroop task included cancer-related words, cardiovascular disease-related words, and neutral words.Results: Participants were split in two groups based on the median of PTSS: High-PTSS and Low-PTSS. There was a significant interaction between word-type and group and a planned contrast test of this interaction indicated that the High-PTSS group had longer response latencies on cancer-related words compared to the other word-type and group combinations.Conclusions: Findings suggest that PTSS are related to attentional bias towards cancer-related stimuli among parents of children recently diagnosed with cancer. Implications of this finding for the understanding of PTSS in this population, future research, and clinical practice are discussed.
16.	Cernvall, Martin, 1980-, et al. (författare) Twelve-Month Follow-Up of a Randomized Controlled Trial of Internet-Based Guided Self-Help for Parents of Children on Cancer Treatment 2017 Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 19:7 Tidskriftsartikel (refereegranskat)abstract Background: A substantial proportion of parents of children on cancer treatment report psychological distress such as symptoms of post-traumatic stress (PTSS), depression, and anxiety. During their child’s treatment many parents also experience an economic burden.Objective: The aim of this study was to evaluate the long-term efficacy of Internet-based guided self-help for parents of children on cancer treatment.Methods: This study was a parallel randomized controlled trial comparing a 10-week Internet-based guided self-help program, including weekly support from a therapist via encrypted email, with a wait-list control condition. The intervention was based on cognitive behavior therapy (CBT) and focused on psychoeducation and skills to cope with difficult thoughts and feelings. Primary outcome was self-reported PTSS. Secondary outcomes were self-reported symptoms of depression, anxiety, health care consumption, and sick leave during the past month. Outcomes were assessed pre- and postintervention and at 12-month follow-up. Parents of children on cancer treatment were invited by health care personnel at pediatric oncology centers, and parents meeting the modified symptom criteria on the PCL-C were included in the study. Self-report assessments were provided on the Web.Results: A total of 58 parents of children on cancer treatment (median months since diagnosis=3) were included in the study (intervention n=31 and control n=27). A total of 18 participants completed the intervention, and 16 participants in each group participated in the 12-month follow-up. Intention-to-treat analyses revealed significant effects in favor of the intervention on the primary outcome PTSS, with large between-group effect sizes at postassessment (d=0.89; 95% CI 0.35-1.43) and at 12-month follow-up (d=0.78; 95% CI 0.25-1.32). Significant effects in favor of the intervention on the secondary outcomes depression and anxiety were also observed. However, there was no evidence for intervention efficacy on health care consumption or sick leave.Conclusions: Using the Internet to provide psychological interventions shows promise as an effective mode of delivery for parents reporting an increased level of PTSS and who consider Internet-based interventions as a viable option. Future research should corroborate these findings and also develop and evaluate interventions and policies that may help ameliorate the economic burden that parents may face during their child’s treatment for cancer.
17.	Chiwanga, Faraja, et al. (författare) Examining the involvement of guardians of children with acute lymphoblastic leukemia in Tanzania as public contributors to inform the design and conduct of the GuardiansCan project: A mixed‐methods study protocol 2024 Ingår i: Cancer Medicine. - 2045-7634. ; 13:14 Tidskriftsartikel (refereegranskat)
18.	Chiwanga, Faraja S., et al. (författare) An mHealth Intervention to Improve Guardians' Adherence to Children's Follow-Up Care for Acute Lymphoblastic Leukemia in Tanzania (GuardiansCan Project) : Protocol for a Development and Feasibility Study 2023 Ingår i: JMIR Research Protocols. - : JMIR Publications. - 1929-0748. ; 12 Tidskriftsartikel (refereegranskat)abstract Background: Cancer is a leading cause of death during childhood and in low- and middle-income countries survival rates can be as low as 20%. A leading reason for low childhood cancer survival rates in low- and middle-income countries such as Tanzania is treatment abandonment. Contributing factors include poor communication between health care providers and children's guardians, insufficient cancer knowledge, and psychological distress.Objective: Our aim is to respond to Tanzanian guardians' poor adherence to children's follow-up care after treatment for acute lymphoblastic leukemia with the help of mobile health (mHealth) technology. Our goal is to increase guardians' adherence to children's medications and follow-up visits and to decrease their psychological distress.Methods: Following the Medical Research Council framework for developing and evaluating complex interventions, we will undertake the GuardiansCan project in an iterative phased approach to develop an mHealth intervention for subsequent testing. Public contribution activities will be implemented throughout via the establishment of a Guardians Advisory Board consisting of guardians of children with acute lymphoblastic leukemia. We will examine the acceptability, feasibility, and perceived impact of Guardians Advisory Board activities via an impact log and semistructured interviews (study I). In phase 1 (intervention development) we will explore guardians' needs and preferences for the provision of follow-up care reminders, information, and emotional support using focus group discussions and photovoice (study II). We will then co-design the mHealth intervention with guardians, health care professionals, and technology experts using participatory action research (study III). In phase 2 (feasibility), we will examine clinical, methodological, and procedural uncertainties associated with the intervention and study procedures to prepare for the design and conduct of a future definitive randomized controlled trial using a single-arm pre-post mixed methods feasibility study (study IV).Results: Data collection for the GuardiansCan project is anticipated to take 3 years. We plan to commence study I by recruiting Guardians Advisory Board members in the autumn of 2023.Conclusions: By systematically following the intervention development and feasibility phases of the Medical Research Council Framework, and working alongside an advisory board of guardians, we intend to develop an acceptable, culturally appropriate, feasible, and relevant mHealth intervention with the potential to increase guardians' adherence to children's follow-up care after treatment of acute lymphoblastic leukemia, leading to a positive impact on children's health and chances to survive, and reducing distress for guardians.
19.	Coumoundouros, Chelsea, et al. (författare) Cognitive behavioural therapy self-help intervention preferences among informal caregivers of adults with chronic kidney disease : an online cross-sectional survey 2023 Ingår i: BMC Nephrology. - : BioMed Central (BMC). - 1471-2369. ; 24:1 Tidskriftsartikel (refereegranskat)abstract Background: Informal caregivers (i.e. family and friends) provide essential support to people with chronic kidney disease (CKD). Many informal caregivers experience mental health problems such as anxiety and depression due to the caregiving role, and commonly have unmet psychological support needs. One potential solution is cognitive behavioural therapy (CBT) self-help interventions that are less reliant on extensive involvement of healthcare professionals, which may increase access. Within the intervention development phase of the MRC framework, the study's primary objective was to examine informal caregivers' self-help intervention preferences (e.g. delivery format, content). Secondary objectives were to describe the informal caregiver's situation (e.g. type of care activities) and mental health (symptoms of depression, anxiety, and stress).Methods: An online cross-sectional survey conducted in the United Kingdom. Informal caregivers of adults living with CKD were recruited via social media, websites, newsletters, magazine articles, a podcast episode, and paid Facebook advertisements. The survey examined: informal caregiver characteristics; care recipient characteristics; self-help intervention preferences; and informal caregiver's mental health using the DASS-21. Data were analysed using descriptive statistics.Results: Sixty-five informal caregivers participated. The majority (85%) were female, caring for a male (77%) spouse/partner (74%). Responses indicated 58% of informal caregivers were experiencing at least mild depression. In total, 48% indicated they were likely to use a CBT self-help intervention, preferring an intervention provided via internet (e.g. website) (64%), workbook (56%), or individually in-person (54%). Regarding content, interventions should cover a wide range of topics including living with CKD, support services, informal caregiver's physical health, and diet. Overall, 48% reported a preference for a supported intervention, with support delivered in-person or via email by a trained professional at a community organisation.Conclusions: Results suggest CBT self-help interventions may be an acceptable way to provide psychological support to informal caregivers, however the study is limited by the small sample size. A wide range of intervention preferences were identified indicating a need to tailor intervention content and delivery to enhance acceptability and engagement. Results will inform development of a CBT self-help intervention for informal caregivers of people with CKD.
20.	Coumoundouros, Chelsea (författare) E-mental health interventions for informal caregivers : Development with a focus on implementation 2023 Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract The four studies within this thesis contributed to the identification of key factors to be considered when designing and implementing e-mental health (e-MH) interventions for informal caregivers. Study I was a mixed-methods systematic review to examine factors related to the effectiveness and implementation of e-MH interventions for informal caregivers of adults with chronic diseases. A thematic synthesis with deductive coding using the Consolidated Framework for Implementation Research (CFIR) identified 152 implementation barriers and facilitators. Barriers and facilitators primarily related to intervention and user characteristics. Exploration of barriers and facilitators related to the implementation setting or wider context was limited.Study II was a cross-sectional survey to examine contextual factors related to informal caregivers (e.g. intervention preferences, caregiving situation) to inform the development of a cognitive behavioural therapy (CBT) self-help intervention to support the mental health of informal caregivers of people living with chronic kidney disease (CKD). The majority of participants were caring for a male spouse or partner living with CKD, and over half were experiencing at least mild depressive symptoms. Informal caregivers reported preferences for CBT self-help interventions to be delivered via the internet, a workbook, or individually in-person, with additional support provided in-person or via email by a trained professional at a non-profit organisation.Study III was a qualitative study to explore the perspectives of professionals (i.e. potential implementers) anticipated to play key roles in the future implementation of an e-MH intervention for informal caregivers of people living with CKD regarding the intervention’s design, delivery, and implementation. Manifest content analysis with primarily deductive coding using the CFIR led to identification of 29 generic categories representing implementation determinants. Potential implementers considered an e-MH intervention as fitting within some existing healthcare delivery models and work routines, however, capacity to be involved with intervention delivery was low. Equitable support access was important to ensure intervention acceptability.Study IV was a qualitative study to explore informal caregivers’ experiences of accessing and receiving support while caring for someone living with CKD. Reflexive thematic analysis generated three themes: (1) “Systems seem to get in the way” – challenges within support systems, describing challenges encountered when navigating complex systems; (2) Relying on yourself, describing how informal caregivers relied on their own skills and networks to find support; and (3) Support systems can “take the pressure off”, describing how support systems were perceived as supportive when empathetic and reliable.
21.	Coumoundouros, Chelsea, et al. (författare) Implementation of e-mental health interventions for informal caregivers of adults with chronic diseases : a protocol for a mixed-methods systematic review with a qualitative comparative analysis 2020 Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 10:6 Forskningsöversikt (refereegranskat)abstract INTRODUCTION: Informal caregivers provide the majority of care to individuals with chronic health conditions, benefiting the care recipient and reducing use of formal care services. However, providing informal care negatively impacts the mental health of many caregivers. E-mental health interventions have emerged as a way to provide accessible mental healthcare to caregivers. Much attention has been given to reviewing the effectiveness and efficacy of such interventions, however, factors related to implementation have received less consideration. Therefore, this mixed-methods systematic review will aim to examine factors associated with the effectiveness and implementation of e-mental health interventions for caregivers.METHODS AND ANALYSIS: Eligible studies published since 1 January 2007 will be searched for in several electronic databases (CINAHL Plus with Full Text, the Cochrane Library, EMBASE, PsycINFO, PubMed and Web of Science), clinical trial registries and OpenGrey, with all screening steps conducted by two independent reviewers. Studies will be included if they focus on the implementation or effectiveness of e-mental health interventions designed for informal adult caregivers of adults with cancer, heart disease, stroke, diabetes, dementia or chronic obstructive pulmonary disease. Pragmatic randomised controlled trials quantitatively reporting on caregiver anxiety, depression, psychological distress or stress will be used for a qualitative comparative analysis to identify combinations of conditions that result in effective interventions. Qualitative and quantitative data on implementation of e-mental health interventions for caregivers will be integrated in a thematic synthesis to identify barriers and facilitators to implementation. These results will inform future development and implementation planning of e-mental health interventions for caregivers.ETHICS AND DISSEMINATION: Ethical approval is not required for this study as no primary data will be collected. Results will be disseminated in the form of a scientific publication and presentations at academic conferences and plain language summaries for various stakeholders.PROSPERO REGISTRATION NUMBER: CRD42020155727.
22.	Coumoundouros, Chelsea, et al. (författare) Implementation of e-mental health interventions for informal caregivers of adults with chronic diseases : a systematic review 2020 Ingår i: Implementation Science. - : Springer Science and Business Media LLC. - 1748-5908. ; 15, s. P10-P10 Tidskriftsartikel (refereegranskat)abstract Background:Many informal caregivers experience mental health difficulties. E-mental health interventions offer effective and accessible mental health support; however, these interventions are often not implemented. To explore implementation of e-mental health interventions for informal caregivers, a systematic review was conducted to (1) examine implementation barriers and facilitators, and (2) identify implementation and intervention features associated with intervention effectiveness.Method:Multiple electronic databases were searched for studies published since 2007 reporting on the implementation and/or effectiveness of e-mental health interventions for informal caregivers of adults with chronic diseases. A thematic synthesis of data related to implementation will be used to identify implementation barriers and facilitators. A qualitative comparative analysis, using data from pragmatic randomized controlled trials, will be used to determine combinations of conditions related to an intervention’s implementation or program features, sufficient for intervention effectiveness.Results:Electronic database searches yielded 9248 unique records to undergo title/abstract screening. The literature screening process is currently underway to identify full-texts eligible for inclusion in the analysis. Preliminary findings will be presented. Implementation barriers and facilitators identified in the thematic synthesis will be presented. These barriers and facilitators will be linked to initial results from the qualitative comparative analysis, as barriers and facilitators may relate to conditions important for intervention effectiveness. Practical applications of these findings will be discussed. If a qualitative comparative analysis cannot be completed prior to the conference, pragmatic trials reporting on intervention effectiveness will be descriptively summarized and analysis plans discussed.Conclusions:This review will identify key factors to consider during implementation of e-mental health interventions for informal caregivers and present potential solutions to overcome implementation barriers. These findings can be used to inform intervention design and implementation strategies to facilitate the implementation of e-mental health services for informal caregivers.Acknowledgements:This work was supported by the European Union’s Horizon 2020 research and innovation program under the Marie-Sklodowska Curie grant agreement No 814072.
23.	Coumoundouros, Chelsea, et al. (författare) Implementation of e–Mental Health Interventions for Informal Caregivers of Adults With Chronic Diseases : Mixed Methods Systematic Review With a Qualitative Comparative Analysis and Thematic Synthesis 2022 Ingår i: JMIR Mental Health. - : JMIR Publications Inc.. - 2368-7959. ; 9:11 Forskningsöversikt (refereegranskat)abstract Background: Informal caregivers commonly experience mental health difficulties related to their caregiving role. e–Mental health interventions provide mental health support in a format that may be more accessible to informal caregivers. However, e–mental health interventions are seldom implemented in real-world practice.Objective: This mixed methods systematic review aimed to examine factors associated with the effectiveness and implementation of e–mental health interventions for informal caregivers of adults with chronic diseases. To achieve this aim, two approaches were adopted: combinations of implementation and intervention characteristics sufficient for intervention effectiveness were explored using qualitative comparative analysis, and barriers to and facilitators of implementation of e–mental health interventions for informal caregivers were explored using thematic synthesis.Methods: We identified relevant studies published from January 1, 2007, to July 6, 2022, by systematically searching 6 electronic databases and various secondary search strategies. Included studies reported on the effectiveness or implementation of e–mental health interventions for informal caregivers of adults with cancer, chronic obstructive pulmonary disease, dementia, diabetes, heart disease, or stroke. Randomized controlled trials reporting on caregivers’ mental health outcomes were included in a crisp-set qualitative comparative analysis. We assessed randomized controlled trials for bias using the Risk of Bias 2.0 tool, and we assessed how pragmatic or explanatory their trial design was using the Pragmatic Explanatory Continuum Indicator Summary 2 tool. Studies of any design reporting on implementation were included in a thematic synthesis using the Consolidated Framework for Implementation Research to identify barriers to and facilitators of implementation.Results: Overall, 53 reports, representing 29 interventions, were included in the review. Most interventions (27/29, 93%) focused on informal cancer or dementia caregivers. In total, 14 reports were included in the qualitative comparative analysis, exploring conditions including the presence of peer or professional support and key persuasive design features. Low consistency and coverage prevented the determination of condition sets sufficient for intervention effectiveness. Overall, 44 reports were included in the thematic synthesis, and 152 barriers and facilitators were identified, with the majority related to the intervention and individual characteristic domains of the Consolidated Framework for Implementation Research. Implementation barriers and facilitators in the inner setting (eg, organizational culture) and outer setting (eg, external policies and resources) domains were largely unexplored.Conclusions: e–Mental health interventions for informal caregivers tend to be well-designed, with several barriers to and facilitators of implementation identified related to the intervention and individual user characteristics. Future work should focus on exploring the views of stakeholders involved in implementation to determine barriers to and facilitators of implementing e–mental health interventions for informal caregivers, focusing on inner and outer setting barriers and facilitators.Trial Registration: PROSPERO (International Prospective Register of Systematic Reviews) CRD42020155727; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020155727
24.	Enö Persson, Johanna, et al. (författare) Experiences of nurses and coordinators in a childhood obesity prevention trial based on motivational interviewing within Swedish child health services 2022 Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 17:1 Tidskriftsartikel (refereegranskat)abstract Purpose: To explore the experiences of nurses and coordinators in the PRIMROSE childhood obesity prevention trial, and to understand the factors that might help to improve the outcome of future primary prevention of obesity.Methods: Using a qualitative approach, data were obtained by interviewing nine intervention nurses and three regional study coordinators. All participants were female. The interviews were transcribed and analysed using content analysis.Results: Two themes emerged: The nurses experienced that it was rewarding to participate in the trial, but challenging to combine the intervention with regular work; and The study coordinators experienced that they were in a difficult position handling the conflicting needs of the research group and the nurses' commitment to usual child health care services. The importance of support, encouragement, briefer and simpler intervention, and adaptation of the training in motivational interviewing to the setting was emphasized. Stress and lack of time were major barriers to deliver the intervention as intended.Conclusions: Although the PRIMROSE intervention was developed in collaboration with representatives from the child health services, and additional research funding was provided to compensate for time spent working with the trial, nurses experienced stress and time constraints.
25.	Grönqvist, Helena, 1975-, et al. (författare) Fifteen Challenges in Establishing a Multidisciplinary Research Program on eHealth Research in a University Setting : A Case Study 2017 Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 19:5 Tidskriftsartikel (refereegranskat)abstract BACKGROUND:U-CARE is a multidisciplinary eHealth research program that involves the disciplines of caring science, clinical psychology, health economics, information systems, and medical science. It was set up from scratch in a university setting in 2010, funded by a governmental initiative. While establishing the research program, many challenges were faced. Systematic documentation of experiences from establishing new research environments is scarce.OBJECTIVE:The aim of this paper was to describe the challenges of establishing a publicly funded multidisciplinary eHealth research environment.METHODS:Researchers involved in developing the research program U-CARE identified challenges in the formal documentation and by reflecting on their experience of developing the program. The authors discussed the content and organization of challenges into themes until consensus was reached.RESULTS:The authors identified 15 major challenges, some general to establishing a new research environment and some specific for multidisciplinary eHealth programs. The challenges were organized into 6 themes: Organization, Communication, Implementation, Legislation, Software development, and Multidisciplinarity.CONCLUSIONS:Several challenges were faced during the development of the program and several accomplishments were made. By sharing our experience, we hope to help other research groups embarking on a similar journey to be prepared for some of the challenges they are likely to face on their way.
26.	Grönqvist, Helena, 1975-, et al. (författare) Swedish parents’ need and opportunity to talk to a psychologist after end of their child’s cancer treatment: a longitudinal study 2015 Konferensbidrag (refereegranskat)
27.	Hagström, Josefin, et al. (författare) Heeding the psychological concerns of young cancer survivors : A single-arm feasibility trial of CBT and a cognitive behavioral conceptualization of distress 2020 Ingår i: PeerJ. - : PeerJ. - 2167-8359. ; 8 Tidskriftsartikel (refereegranskat)abstract BackgroundA 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.MethodsA 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.ResultsTen 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.ConclusionsGiven 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.
28.	Hauffman, Anna, et al. (författare) Cocreated internet-based stepped care for individuals with cancer and concurrent symptoms of anxiety and depression : Results from the U-CARE AdultCan randomized controlled trial 2020 Ingår i: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 29:12, s. 2012-2018 Tidskriftsartikel (refereegranskat)abstract Objective The aim was to evaluate the effects of cocreated internet-based stepped care (iCAN-DO) on anxiety, depression, posttraumatic stress, and health-related quality of life (HRQoL) in individuals with cancer and self-reported anxiety and/or depression symptoms, compared with standard care.Methods Clinically recruited individuals with breast, colorectal, or prostate cancer underwent online screening with the Hospital Anxiety and Depression Scale (HADS). Those with anxiety and/or depression symptoms (>7 on any of the HADS subscales) were randomized to iCAN-DO or standard care. iCAN-DO comprised psychoeducation and self-care strategies (step 1) and internet-based cognitive behavioral therapy (iCBT, step 2). Data were collected before randomization and at 1, 4, 7, and 10 months and analyzed with intention-to-treat regression analysis and randomization tests.Results Online screening identified 245 (27%) of 909 individuals who reported anxiety and/or depression symptoms. They were randomized to iCAN-DO (n = 124) or standard care (n = 121). Of them 49% completed the 10-month assessment, and in the iCAN-DO group 85% accessed step 1 and 13% underwent iCBT. iCAN-DO decreased the levels of symptoms of depression (−0.54, 95% confidence interval: −1.08 to −0.01, P < .05) and the proportion of individuals with symptoms of depression (P < .01) at 10 months, compared with standard care, according to HADS. There were no significant effects on anxiety, posttraumatic stress, or HRQoL.Conclusion Internet-based stepped care improves symptoms of depression in individuals with cancer. Further studies are needed to gain knowledge on how to optimize and implement internet-based support in oncology care.
29.	Hedén, Lena E, et al. (författare) Children's self-reports of fear and pain levels during needle procedures 2020 Ingår i: Nursing Open. - : Wiley. - 2054-1058. ; 7:1, s. 376-382 Tidskriftsartikel (refereegranskat)abstract AimThe objective was to determine the levels of and potential relationships between, procedure‐related fear and pain in children.DesignClinical based cross‐sectional.MethodsNinety 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.ResultsThe 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.
30.	Hovén, Emma, et al. (författare) Impact of a child’s cancer disease on parents’ everyday life : A longitudinal study from Sweden 2017 Ingår i: Acta Oncologica. - 0284-186X .- 1651-226X. ; 56:1, s. 93-100 Tidskriftsartikel (refereegranskat)abstract Background: A child's cancer disease may disrupt the daily life of the affected family for a long period. The aim was to describe restrictions on parents' leisure activities and work/studies during and after the child's treatment. Methods: This study used data from a cohort of mothers and fathers (n = 246) of children diagnosed with cancer. Data was collected five times from two months after diagnosis to one year after end of treatment. Reports of restrictions were evaluated over time, between mothers and fathers, and in relation to parent-reported child symptom burden (The Memorial Symptom Assessment Scale) and partial post-traumatic stress disorder (PTSD) (The PTSD Checklist-Civilian Version). Results: Two (51%) and four (45%) months after diagnosis, about half reported that their leisure activities were restricted at least some of the time. Corresponding percentages for restrictions on work/ studies were 84% and 77%. One year after end of treatment, the great majority reported that their leisure activities (91%) and/or work/studies (76%) were never/seldom restricted. During treatment, more mothers than fathers reported restrictions on work/studies all/most of the time. After end of treatment, gender was only related to reports of restrictions among parents not reporting partial PTSD. More parents who reported being restricted all/most of the time also reported partial PTSD and/or a greater symptom burden for the child. Conclusion: Parents report frequent restrictions on everyday life during treatment. One year after end of treatment, parents report only a limited impact of the child's cancer on their leisure activities and work/studies. More parents who report restrictions also report partial PTSD and/or a greater child symptom burden. The effect of gender on restrictions varies depending on reports of partial PTSD. Future studies of gender differences regarding the impact of a child's cancer on parents' everyday life should thus consider mothers' and fathers' level of psychological distress.
31.	Hovén, Emma, 1983-, et al. (författare) Parents' needs of support following the loss of a child to cancer : a Swedish, prospective, longitudinal, multi-centre study 2019 Ingår i: Acta Oncologica. - : TAYLOR & FRANCIS LTD. - 0284-186X .- 1651-226X. Tidskriftsartikel (refereegranskat)abstract 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.
32.	Hovén, Emma, et al. (författare) Posttraumatic Stress in Parents of Children Diagnosed with Cancer : Hyperarousal and Avoidance as Mediators of the Relationship between Re-Experiencing and Dysphoria 2016 Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 11:5 Tidskriftsartikel (refereegranskat)abstract Background Increased understanding of the relationships between different symptom clusters involved in posttraumatic stress symptoms (PTSS) could guide empirical research and clinical practice. The objective of the present study was to investigate whether hyperarousal and avoidance mediated the relationship between re-experiencing and dysphoria in parents of children diagnosed with cancer. Methods Longitudinal data from parents of children receiving cancer therapy were used. PTSS were assessed using the PTSD Checklist Civilian Version at one week (T1), two (T2) and four months (T3) after diagnosis. Mediation analyses for multiple mediators were conducted for mothers (n = 122) and fathers (n = 121), respectively. The mediation model tested the assumption that the PTSS symptom clusters hyperarousal and avoidance mediated the relationship between re-experiencing and dysphoria. Results For fathers, none of the hypothesized mediators were significant. For mothers, hyperarousal mediated the relationship between re-experiencing and dysphoria, but avoidance did not. Conclusions Results suggest that hyperarousal is important for the development of dysphoria in mothers, supporting use of interventions targeting such symptoms in the early and ongoing period following the child's diagnosis.
33.	Humphries, Sophia, et al. (författare) Internet-Based Cognitive Behavioral Therapy for Patients Reporting Symptoms of Anxiety and Depression After Myocardial Infarction : U-CARE Heart Randomized Controlled Trial Twelve-Month Follow-up 2021 Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 23:5 Tidskriftsartikel (refereegranskat)abstract Background: The U-CARE Heart trial was one of the first randomized controlled trials to evaluate the effect of internet-based cognitive behavioral therapy on self-reported symptoms of anxiety or depression for patients with a recent myocardial infarction. While the effects of internet-based cognitive behavioral therapy on Hospital Anxiety and Depression Scale (HADS) scores at 14 weeks postbaseline were not significant, in this study, we investigated possible long-term effects of treatment.Objective: The aim of this study was to evaluate the long-term effectiveness of internet-based cognitive behavioral therapy on self-reported symptoms of anxiety and depression in patients 12 months after a myocardial infarction and to explore subsequent occurrences of cardiovascular disease events.Methods: Shortly after acute myocardial infarction, 239 patients (33% female, mean age 59.6 years) reporting mild-to-moderate symptoms of anxiety or depression were randomized to 14 weeks of therapist-guided internet-based cognitive behavioral therapy (n=117) or treatment as usual (n=122). Data from national registries were used to explore group differences in clinical outcomes such as cardiovascular disease and cardiovascular-related mortality for a follow-up period of up to 5 years: group differences in HADS total score 1 year post-myocardial infarction, the primary outcome, was analyzed using multiple linear regression. Secondary outcomes, such as HADS anxiety and depression subscales and the Cardiac Anxiety Questionnaire total score (CAQ), which measures heart-focused anxiety, were analyzed in the same way. Multiple imputation was used to account for missing data, and a pooled treatment effect was estimated. Adjusted Cox proportional hazards models were used to estimate hazard ratios (HRs) for data pertaining to registry outcomes.Results: Both groups reported lower HADS total scores 1 year after myocardial infarction than those at baseline. HADS total scores were not significantly different between the treatment and control groups 1 year after myocardial infarction (beta=-1.14, 95% CI -2.73 to 0.45, P=.16). CAQ was the only measure improved significantly by internet-based cognitive behavioral therapy when compared with treatment as usual ( beta=-2.58, 95% CI -4.75 to -0.42, P=.02) before adjusting for multiple comparisons. The composite outcome of nonfatal cardiovascular events and cardiovascular-related mortality did not differ between groups but was numerically higher in the internet-based cognitive behavioral therapy group, who were at slightly greater risk (HR 1.8, 95% CI 0.96 to 3.4, P=.07). Adjusting for previous myocardial infarction and diabetes attenuated this estimate (HR 1.5, 95% CI 0.8 to 2.8, P=.25).Conclusions: Internet-based cognitive behavioral therapy was not superior in reducing self-reported symptoms of depression or anxiety compared to treatment as usual at the 1-year follow-up after myocardial infarction. A reduction in cardiac-related anxiety was observed but was not significant after adjusting for multiple comparisons. There was no difference in risk of cardiovascular events between the treatment groups. Low treatment adherence, which might have affected treatment engagement and outcomes, should be considered when interpreting these results.
34.	Igelström, Helena, 1976-, et al. (författare) Long-term effects on depression and anxiety of an internet-based stepped care intervention for patients with cancer and symptoms of depression and anxiety : The U-CARE AdultCan trial 2023 Ingår i: Internet Interventions. - : Elsevier. - 2214-7829. ; 32 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Cancer is a serious disease that commonly causes significant psychological distress. The internet-based intervention (iCAN-DO), utilizing a stepped care approach for the treatment of anxiety and depression in individuals with cancer, has been shown to have favorable results for symptoms of depression at the primary endpoint, 10 months after randomization compared to standard care (SC). The aim of the present study was to evaluate the long-term effects of the intervention 18 and 24 months after randomization.METHODS: Patients with breast, colorectal, or prostate cancer and a score > 7 on either of the Hospital Anxiety and Depression Scale (HADS) subscales (n = 245) were recruited to the study in conjunction with a regular hospital visit. They were randomized to access to the stepwise iCAN-DO intervention for 24 months or to SC. Step 1 of the intervention comprised psycho-educative online material. In Step 2, internet-based cognitive-behavioral therapy with individual online support from a therapist was added. Step 2 was offered to those who reported persistent anxiety or depression symptoms (>7 on HADS), also at 1, 4, and/or 7 months after randomization. Missing data were imputed using the last rank carried forward method and used for the main analyses according to the intention-to-treat approach. Effects sizes (Cohen's d), and minimally clinically important difference (MCID) were calculated. Linear mixed models were used to analyze intervention effects over time.RESULTS: Symptoms of depression decreased significantly (p < 0.05) in the iCAN-DO group compared with the SC group from baseline to 18 months (d = 0.29), but not to 24 months (d = 0.27). Even though the average iCAN-DO group participant surpassed a MCID in symptoms of anxiety (>2 p) at both long-term follow-ups, the differences did not reach statistical significance, either at 18 months (p = 0.10) or 24 months (p = 0.09). Positive effects of iCAN-DO compared with the SC were also shown for some secondary HRQoL-outcomes; social functioning at 18 months (p = 0.02) and 24 months (p = 0.001), and sleep problems at 24 months (p = 0.01).CONCLUSION: A stepped-care internet-based intervention that has previously shown positive results for symptoms of depression at 10 months did show similar positive long-term effects also at 18 months. For symptoms of anxiety, no effect could be shown. The internet may provide an effective format for interventions to reduce symptoms of depression after cancer at patients' own choice of time, regardless of distance to a psycho-oncology clinic.
35.	Johansson, Birgitta, 1959-, et al. (författare) The effect of internet-administered support (carer eSupport) on preparedness for caregiving in informal caregivers of patients with head and neck cancer compared with support as usual: a study protocol for a randomized controlled trial. 2024 Ingår i: BMC cancer. - 1471-2407. ; 24:1 Tidskriftsartikel (refereegranskat)abstract Informal caregivers (ICs) of patients with cancer provide essential and mainly uncompensated care. A self-perceived preparedness to care for the patient is associated with a lower caregiver burden, described as the extent to which caregiving is perceived as having adverse effects on IC functioning and well-being. ICs' well-being is associated with patient-perceived quality of care, suggesting that interventions to optimize ICs' health are essential in order to improve patient care. Head and neck cancer (HNC) is the seventh most common malignant disease in the world. The disease and its treatment have a significant negative impact on the patient's health and quality of life. Symptoms usually interfere with swallowing, food and fluid intake, breathing, speaking, and communication. ICs frequently manage patients' symptoms and side effects, especially problems related to nutrition and oral pain, without being properly prepared. Carer eSupport is an Internet-administered intervention, based on focus group discussions with ICs, developed in collaboration with ICs and healthcare professionals, tested for feasibility, and deemed feasible. This study protocol outlines the methods of investigating the effects of Carer eSupport plus support as usual (SAU) on self-reported preparedness for caregiving, caregiver burden, and well-being in the ICs of patients with HNC, compared with ICs receiving SAU only.In this randomized controlled trial, 110 ICs of patients with HNC, undergoing radiotherapy combined with surgery and/or medical oncological treatment, will be randomized (1:1) to Carer eSupport plus SAU or SAU only. Data will be collected at baseline (before randomization), post-intervention (after 18 weeks), and 3 months after post-intervention. The primary outcome is self-reported preparedness for caregiving. Secondary outcomes are self-reported caregiver burden, anxiety, depression, and health-related quality of life. The effect of Carer eSupport plus SAU on preparedness for caregiving and secondary outcomes, compared with SAU only, will be evaluated by intention to treat analyses using linear regression models, mixed-model regression, or analysis of covariance.If proven effective, Carer eSupport has the potential to significantly improve ICs' preparedness for caregiving and their wellbeing, thereby improving patient-perceived quality of care and patient wellbeing.ClinicalTrials.gov; NCT06307418, registered 12.03.2024 (https://clinicaltrials.gov/search? term=NCT06307418).
36.	Kamsvåg-Magnusson, Tove, 1986-, et al. (författare) Pain in pediatric oncology : A Swedish nationwide follow-up study among nurses and physicians 2023 Ingår i: Acta Paediatrica. - 0803-5253 .- 1651-2227. Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
37.	Kamsvåg, Tove, 1986-, et al. (författare) Ibuprofen in needle procedures in children with cancer : A feasibility and pilot study 2021 Ingår i: Acta Paediatrica. - : John Wiley & Sons. - 0803-5253 .- 1651-2227. ; 110:2, s. 704-710 Tidskriftsartikel (refereegranskat)abstract AIM: To investigate the feasibility, and perform a pilot study, of a randomised clinical trial, investigating whether children experience less pain, fear and/or distress when they receive oral ibuprofen vs placebo before a needle is inserted in a subcutaneously implanted intravenous port.METHODS: Twenty-three children were included consecutively and randomised to either oral ibuprofen (n = 12) 7.5 mg/kg body weight or placebo (n = 11). The child's pain, fear and distress were reported by parents, nurses and the children (if ≥7 years of age). Feasibility criteria were defined as (a) ≥4 children included/month, (b) ≥80% of eligible patients agreed to participate, (c) >90% treated according to protocol, (d) <5% missing data, (e) s-cortisol samples analysed in ≥90% of the children.RESULTS: All feasibility criteria were met except recruitment and consent. Parents, nurses and children reported no trend of benefit of oral ibuprofen with regard to pain, fear and distress compared with placebo.CONCLUSION: The study failed to meet important feasibility criteria and was closed due to low recruitment rate and absence of trend of effect. From this data, we cannot state that ibuprofen is not helpful in needle procedures but that it seems unlikely.
38.	Kamsvåg, Tove, 1986- (författare) Pain in pediatric oncology : Explorative and interventional studies focusing on oral mucositis 2023 Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract The aim of this thesis was to examine the prevalence of pain in children treated for cancer with a special focus oral mucositis. In addition, we wanted to examine if oral cryotherapy (OC) could reduce the incidence of severe oral mucositis in children undergoing hematopoietic stem cell transplantation (HSCT), and explore new methods to implement OC. In Study I, a retrospective questionnaire study including 71 parents and 38 children that had undergone HSCT in Sweden in the past three years, we found that 47% of the parents and 42 % of the children reported that the child experienced oral pain during the treatment. According to the parents, 52% of the children had needed medication for oral pain. Study II was a randomized clinical trial including 49 children randomized OC or standard oral care during HSCT. The prevalence of severe oral mucositis was 52% in the whole group with no differences between the two groups. However, compliance to OC was low, especially in younger children. In Study III a new intra oral cooling device (IOCD) was tested in 12 healthy adults. The temperature reduction in the oral cavity, after 60 minutes of OC with the IOCD, was similar to the temperature reduction seen after OC with ice, with few side effects reported. In Study IV, a questionnaire study including 120 nurses and 65 physicians, 57% of the healthcare professionals reported pain to be present often/very often in the children they treated for cancer. Treatment-related pain was perceived to be the most troublesome type of pain. In conclusion, this thesis demonstrates that pain is present in many children treated for cancer and that more than half of the children undergoing HSCT develop sever oral mucositis. Oral cryotherapy did not reduce the incidence of OM in children undergoing HSCT but compliance to the intervention was low. An IOCD has the potential benefit of less discomfort, improving compliance, but needs to be evaluated in children.
39.	Kohi, Thecla W., et al. (författare) Cancer-related concerns and needs among young adults and children on cancer treatment in Tanzania : A qualitative study 2019 Ingår i: BMC Cancer. - : Springer Science and Business Media LLC. - 1471-2407. ; 19:82 Tidskriftsartikel (refereegranskat)abstract 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.
40.	Kukkola, Laura, et al. (författare) Perceptions of support among Swedish parents of children after end of successful cancer treatment : A prospective, longitudinal study 2017 Ingår i: Acta Oncologica. - 0284-186X .- 1651-226X. ; 56:12, s. 1705-1711 Tidskriftsartikel (refereegranskat)abstract Introduction: Most children survive childhood cancer, however parenting a child diagnosed with cancer is a major challenge. The main aim of the current study was to describe Swedish parents’ need, opportunity and benefit of support from healthcare professionals and significant others after end of a child’s successful cancer treatment.Material and methods: Data was collected from approximately one week after end of successful treatment/six months after transplantation (T4, n ¼ 212) up to five years thereafter (T7, n ¼ 137). Parents answered questions via telephone about need, opportunity and benefit of talking to psychologists, social workers, partners and friends.Results: The proportion reporting need of support from healthcare professionals varied between 73% (mothers’ need of support from social workers, T4) and 7% (fathers’ need of support from psychologists/social workers, T7). Need of support from significant others varied between 99% (mothers’ and fathers’ need of support from partners, T4) and 27% (fathers’ need of support from friends, T7). The proportion reporting need of support decreased over time (p < .001), no decrease occurred from three months after end of treatment/nine months after transplantation (T5) to one year after end of treatment/18 months after transplantation (T6). More mothers than fathers reported need of support from friends at T5 (p < .001) and T7 (p < .05) and from psychologists at T7 (p < .05). Opportunities for support from healthcare professionals varied, most reported opportunity for support from significant others. Almost all reported benefit from received support.Conclusion: A declining number reports a need of support over time, however subgroups report an unmet need and almost every parent perceive support from healthcare professionals as beneficial. More parents should get access to psychosocial support services after end of a child’s cancer treatment/transplantation.
41.	Langegård, Ulrica, et al. (författare) Internet-based support for informal caregivers to individuals with head and neck cancer (Carer eSupport) : a study protocol for the development and feasibility testing of a complex online intervention 2022 Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 12:5 Tidskriftsartikel (refereegranskat)abstract It is strongly recommended that randomised controlled trials are preceded with an exploration of the needs of the target population and feasibility testing of the intervention. The present study protocol is set out to describe these steps in the development of a complex intervention.The past decades’ transition of care from inpatient to outpatient settings has increased the complexity of caregivers’ responsibilities, which they may not be prepared for. There is a need to support informal caregivers (ICs) to prepare them for caregiving and decrease the caregiver burden. The main aim of this study is to describe the development of an internet-based intervention (Carer eSupport) to improve ICs’ ability to support individuals with head and neck cancer and to describe the testing of the feasibility and acceptability of Carer eSupport.Methods and analysisThis is a multicentre study involving the ear, nose and throat clinics and the oncology and radiotherapy clinics at three university hospitals. The study protocol comprises two phases, development and feasibility testing, using the Medical Research Council framework for developing a complex intervention. Carer eSupport will be based on the results from focus group discussions with ICs and healthcare professionals (planned for n=6–8 in respective groups) and scientific evidence, the Social Cognitive Theory and the Theory of Acceptance and Use of Technology. The feasibility testing will include 30 ICs who will have access to Carer eSupport for 1 month. The feasibility testing will be evaluated with a mixed-method design.Ethics and disseminationAll procedures have been approved by the Ethics Committee at Uppsala University (Dnr: 2020-04650). Informed consent will be obtained before enrolment of patients, their ICs and healthcare staff. The feasibility testing is registered at Clinicaltrials.gov (Identifier: NCT05028452). Findings will be disseminated in peer-reviewed journal publications.
42.	Ljungman, Lisa, 1981-, et al. (författare) A cognitive behavioral conceptualization of cancer-related psychological distress in parents of childhood cancer survivors Annan publikation (övrigt vetenskapligt/konstnärligt)
43.	Ljungman, Lisa, 1981-, et al. (författare) 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 2018 Ingår i: PeerJ. - : PeerJ. - 2167-8359. ; 6 Tidskriftsartikel (refereegranskat)abstract ObjectiveA 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.MethodsAn 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.ResultsA 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.ConclusionThe 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.
44.	Ljungman, Lisa, 1981-, et al. (författare) Development and preliminary evaluation of individualized face-to-face cognitive behavior therapy for psychological distress in parents of childhood cancer survivors Annan publikation (övrigt vetenskapligt/konstnärligt)
45.	Lundgren, Johan, 1977-, et al. (författare) Concerns experienced by parents of children treated for cancer : A qualitative study to inform adaptations to an internet-administered, low-intensity cognitive behavioral therapy intervention 2023 Ingår i: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 32:2, s. 237-246 Tidskriftsartikel (refereegranskat)abstract Abstract Objective Childhood cancer treatment completion is associated with mental health difficulties and negative socioeconomic consequences for parents. However, psychological support needs are often unmet. We developed an internet-administered, guided, low-intensity cognitive behavioral therapy-based self-help intervention (EJDeR) and examined feasibility and acceptability with a single-arm feasibility trial (ENGAGE). Results suggest EJDeR is acceptable, however, adherence, especially for fathers, could be improved. Following the Medical Research Council complex interventions framework, this study explores concerns experienced by parents actively seeking support related to their child's cancer who were recruited into ENGAGE to inform further adaptation of EJDeR. Method Seventy-three semi-structured interviews (26 fathers, 47 mothers) were conducted, with data analyzed using manifest content analysis. Results Analysis resulted in seven categories: (1) Feeling lost and lonely in life; (2) Low mood; (3) Parenting difficulties; (4) Productivity difficulties; (5) Relationship challenges; (6) Stress reactions; and (7) Worry. With the exception of subcategories Afraid of not being a good parent, Cancer recurrence, and Child's development and future a somewhat higher percentage of mothers than fathers mentioned all identified concerns. Conclusion Parents described experiencing a range of concerns after their child had completed cancer treatment. EJDeR will be adapted to address these concerns and include indirect intervention modules targeting concerns such as stress. Information to support parenting, relationships, finance, and employment difficulties, alongside signposting to inform help-seeking, will be included. Findings also suggest a need to improve the gender-sensitivity of EJDeR.
46.	Masika, Golden M., et al. (författare) Concerns and Needs of Support Among Guardians of Children on Cancer Treatment in Dar es Salaam : A Qualitative Study 2020 Ingår i: Cancer Nursing. - : Wolters Kluwer. - 0162-220X .- 1538-9804. ; 43:6, s. E342-E348 Tidskriftsartikel (refereegranskat)abstract 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.
47.	Mårtensson, Erika, et al. (författare) Psychological interventions for depression among informal caregivers of older adult populations : protocol of a systematic review and meta-analysis of randomised controlled trials. 2020 Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 10:9 Forskningsöversikt (refereegranskat)abstract Introduction: Increased life expectancy has led to an increased demand for family members to provide informal care for their older relatives in the home. Many studies suggest informal caregivers are at greater risk of experiencing symptoms of depression. However, there is a lack of research examining the effectiveness of psychological interventions targeting these symptoms alongside clinical and methodological moderators potentially associated with intervention effectiveness. This review aims to address this gap and will inform the development of a psychological intervention targeting depression among adult-child caregivers of older parents, given many studies show that among informal caregivers of older adults, adult children experience specific difficulties and needs for psychological support. Further, the lack of studies targeting adult children specifically necessitates conducting this review targeting caregivers of older adults in general.Methods and analysis: Randomised controlled trials of psychological interventions targeting symptoms of depression among informal caregivers will be identified via a systematic search of electronic databases (PubMed, Cumulative Index to Nursing and Allied Health Literature, Excerpta Medica DataBase, PsycINFO, Cochrane Library and Web of Science) and supplemented by handsearching of previous systematic reviews, reference and forward citation checking, and expert contact. If possible, a meta-analysis will be conducted to examine the: (1) effectiveness of psychological interventions for depression among informal caregivers of older adults, (2) effectiveness of psychological interventions for secondary outcomes such as anxiety, stress, caregiver burden, psychological distress, quality of life, well-being and self-efficacy and (3) moderating effects of clinical and methodological factors on effectiveness.Ethics and dissemination: Ethical approval will not be necessary for this study given primary data will not be collected. Results will inform the development of a psychological intervention for adult-child caregivers of older parents and will be disseminated through publication in peer-reviewed journals and conference presentations.PROSPERO registration number: CRD42020157763.
48.	Mårtensson, Erika, et al. (författare) Psychological interventions for symptoms of depression among informal caregivers of older adult populations : A systematic review and meta-analysis of randomized controlled trials 2023 Ingår i: Journal of Affective Disorders. - : Elsevier. - 0165-0327 .- 1573-2517. ; 320, s. 474-498 Tidskriftsartikel (refereegranskat)abstract Background: Symptoms of depression are commonly experienced by informal caregivers of older adults, howeverthere is uncertainty concerning effectiveness of psychological interventions targeting symptoms of depression inthis population. Further, there is uncertainty concerning important clinical moderators, including interventiontype and care recipient health condition. This review examined the effectiveness of psychological interventionstargeting symptoms of depression in informal caregivers of older adults.Methods: PubMed, CINAHL, Embase, PsycINFO, Cochrane Library and Web of Science were searched. Risk of biaswas assessed using the Cochrane Risk of Bias tool version 2.Results: Fifteen studies were identified and twelve (1270 participants) provided data for the meta-analysis. Interventionsincluded cognitive behavioral therapy (4 studies), problem-solving therapy (4 studies); non-directivesupportive therapy (4 studies) and behavioral activation (3 studies). A small effect size favouring the interventionwas found for symptoms of depression (g = - 0.49, CI = - 0.79, - 0.19, I2 = 83.42 %) and interventions wereeffective in reducing incidence of major depression (OR = 0.177, CI = 0.08, 0.38), caregiver burden (g = - 0.35,CI = - 0.55, - 0.15) and psychological distress (g = - 0.49, CI = - 0.70, - 0.28). Given high heterogeneity,findings should be interpreted with caution. Overall risk of bias was high.Limitations: Studies were limited to those in English or Swedish.Conclusion: Psychological interventions may be effective in reducing symptoms of depression among informalcaregivers of older adults. However, evidence is inconclusive due to heterogeneity, high risk of bias, and indirectnessof evidence.
49.	Norlund, Fredrika, et al. (författare) Internet-based Cognitive Behavior Therapy for Symptoms of Depression and Anxiety among Patients with a Recent Myocardial Infarction : The U-CARE Heart Randomized Trial 2018 Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 20:3 Tidskriftsartikel (refereegranskat)abstract Background: Symptoms of depression and anxiety are common after a myocardial infarction (MI). Internet-based cognitivebehavioral therapy (iCBT) has shown good results in other patient groups.Objective: The aim of this study was to evaluate the effectiveness of an iCBT treatment to reduce self-reported symptoms ofdepression and anxiety among patients with a recent MI.Methods: In total, 3928 patients were screened for eligibility in 25 Swedish hospitals. Of these, 239 patients (33.5%, 80/239women, mean age 60 years) with a recent MI and symptoms of depression or anxiety were randomly allocated to a therapist-guided,14-week iCBT treatment (n=117), or treatment as usual (TAU; n=122). The iCBT treatment was designed for post-MI patients.The primary outcome was the total score of the Hospital Anxiety and Depression Scale (HADS) 14 weeks post baseline, assessedover the internet. Treatment effect was evaluated according to the intention-to-treat principle, with multiple imputations. For themain analysis, a pooled treatment effect was estimated, controlling for age, sex, and baseline HADS.Results: There was a reduction in HADS scores over time in the total study sample (mean delta=−5.1, P<.001) but no differencebetween the study groups at follow-up (beta=−0.47, 95% CI −1.95 to 1.00, P=.53). Treatment adherence was low. A total of46.2% (54/117) of the iCBT group did not complete the introductory module.Conclusions: iCBT treatment for an MI population did not result in lower levels of symptoms of depression or anxiety comparedwith TAU. Low treatment adherence might have influenced the result.Trial Registration: ClinicalTrials.gov NCT01504191; https://clinicaltrials.gov/ct2/show/NCT01504191 (Archived at Webciteat http://www.webcitation.org/6xWWSEQ22)
50.	Pettman, Danelle, et al. (författare) Development of an integrated behavioural activation and parenting internet-administered intervention for postpartum depression parenting sensitivity : Protocol for a participatory action research study 2020 Konferensbidrag (övrigt vetenskapligt/konstnärligt)

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Lärosäte: Uppsala universitet (75); Karolinska Institutet (13); Högskolan Dalarna (4); Göteborgs universitet (3); Röda Korsets Högskola (3); Stockholms universitet (2); visa fler...; Högskolan i Borås (2); Marie Cederschiöld högskola (2); Umeå universitet (1); Örebro universitet (1); Linköpings universitet (1); Lunds universitet (1); Sophiahemmet Högskola (1); visa färre...

Språk: Engelska (74); Svenska (1)

Forskningsämne (UKÄ/SCB): Medicin och hälsovetenskap (69); Samhällsvetenskap (40); Lantbruksvetenskap (1)

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