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Woodford, J., Reuther, C., Asberg Dun, L., Farrand, P., Johansen, K., Richards, D. A., . . . von Essen, L. (2026). A workbook- and audio-administered, telephone-guided, low-intensity cognitive behavioural therapy intervention (EJDeR) for parents of persons treated for cancer during childhood: protocol for the CHANGE-pilot randomised controlled trial. BMJ Open, 16(9), Article ID e124267.
Open this publication in new window or tab >>A workbook- and audio-administered, telephone-guided, low-intensity cognitive behavioural therapy intervention (EJDeR) for parents of persons treated for cancer during childhood: protocol for the CHANGE-pilot randomised controlled trial
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2026 (English)In: BMJ Open, E-ISSN 2044-6055, Vol. 16, no 9, article id e124267Article in journal (Refereed) Published
Abstract [en]

Introduction Childhood cancer and its treatment place substantial demands on parents, causing significant disruptions in multiple areas of life. Parents report psychological, psychosocial, and economic consequences related to their child’s illness. In Sweden, psychosocial support is available to parents via paediatric oncology care during cancer treatment; however, only a minority of parents have access to psychological support after treatment completion. Increasing and improving access to such support could enhance parental mental well-being and help prevent or alleviate negative consequences. One potential solution to provide support is the EJDeR intervention, a co-created workbook- and audio-administered, telephone-guided, low-intensity cognitive behavioural therapy (LICBT) intervention for parents of persons treated for cancer during childhood. Objectives are to examine the feasibility of (1) EJDeR delivered via workbooks, audio files and video case vignettes with telephone guidance from a parent guide, and (2) planned study procedures for a future superiority randomised controlled trial of EJDeR.

Methods and analysis This is a parallel-group, two-arm, pilot randomised controlled trial with a 1:1 allocation ratio. A Parent Advisory Board (PAB) contributes to the research. We aim to recruit 60 parents of persons diagnosed with cancer at age 0–18 years whose treatment was completed 3 months to 5 years earlier. Participants will be randomly allocated to EJDeR plus usual care or usual care alone. EJDeR is delivered over 12 weeks via workbooks, audio files and video case vignettes, with telephone guidance from a parent guide. We will examine feasibility outcomes related to procedural, intervention, and methodological uncertainties using a priori progression criteria following a GO-AMEND-STOP progression framework. We will measure clinical (mental well-being, symptoms of depression, anxiety, and post-traumatic stress) and health economic (health-related quality of life and societal resource use) outcomes at baseline, post-treatment (12 weeks), and follow-up (6 months post-treatment). Data analysis is primarily descriptive.

Ethics and dissemination This trial was approved by the Swedish Ethical Review Authority (Dnr 2025–09024-01, approval date: 2 February 2026). We will obtain written informed consent from all participants and disseminate findings in collaboration with the PAB through peer-reviewed publications, conference presentations, and non-academic dissemination activities such as co-writing plain language summaries and dissemination via childhood cancer organisations.

Trial registration number ISRCTN51549508.

Place, publisher, year, edition, pages
BMJ Publishing Group Ltd, 2026
Keywords
Cancer Survivors, Family, Informal Caregivers, Paediatric oncology, Psychosocial Intervention, MENTAL HEALTH
National Category
Cancer and Oncology Applied Psychology Nursing
Identifiers
urn:nbn:se:uu:diva-601014 (URN)10.1136/bmjopen-2026-124267 (DOI)001884885000001 ()42772887 (PubMedID)2-s2.0-105051249256 (Scopus ID)
Funder
Swedish Childhood Cancer Foundation, PR2017-0005Swedish Childhood Cancer Foundation, PR2023-0025Swedish Cancer Society, 222234Pj01H
Available from: 2026-10-05 Created: 2026-10-05 Last updated: 2026-10-05Bibliographically approved
Rajabzadeh, V., Sami, A., Harila, A. H., Richards, D. A., Woodford, J. & von Essen, L. (2026). Cancer survival and its social determinants among children with a migrant background: systematic review protocol. BMJ Open, 16(5), Article ID e116611.
Open this publication in new window or tab >>Cancer survival and its social determinants among children with a migrant background: systematic review protocol
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2026 (English)In: BMJ Open, E-ISSN 2044-6055, Vol. 16, no 5, article id e116611Article in journal (Refereed) Published
Abstract [en]

Introduction Childhood cancer survival rates are not equal for all, with disparities existing both between and within low- and middle-income countries and high-income countries, particularly among ethnic minorities and children with migrant backgrounds. Factors such as cultural misunderstandings, language barriers and limited support networks can lead to delays in diagnosis and treatment challenges, which can result in poor health outcomes. Social determinants of health (SDoH), such as housing insecurity and poverty, may worsen these disparities. This protocol outlines a systematic review to examine childhood cancer survival in children with migrant backgrounds compared with non-migrants and to explore the SDoH associated with these survival outcomes.

Methods and analysis We will search MEDLINE (PubMed), Scopus, Web of Science, and Embase for relevant studies, with secondary searches of grey literature. Two reviewers will screen for observational studies, including longitudinal cohort, case–control, cross-sectional and registry-based studies, that report childhood cancer survival outcomes (eg, survival rates, HRs) for both migrant and non-migrant populations. A narrative synthesis will explore SDoH and their association with survival outcomes. If data allow, we will perform random-effects meta-analyses to estimate pooled survival outcomes. Subgroup analyses will examine factors such as geographic region, migration status and type of cancer.

Discussion Understanding factors contributing to childhood cancer survival disparities in migrant populations is critical for informing the development of targeted strategies to address them, ensuring all children, regardless of their migration status, have an equitable opportunity for effective care and improved outcomes.

Ethics and dissemination Ethical approval is not required for this study as it is based on previously published data and does not involve primary data collection. We will publish the results in peer-reviewed journals and present at academic conferences.

PROSPERO registration number CRD42024547239.

Place, publisher, year, edition, pages
BMJ Publishing Group Ltd, 2026
Keywords
Childhood cancer, Cancer outcomes, Pediatric oncology, Health of migrants, Health inequities
National Category
Cancer and Oncology Pediatrics Public Health, Global Health and Social Medicine
Identifiers
urn:nbn:se:uu:diva-586387 (URN)10.1136/bmjopen-2026-116611 (DOI)001755955100001 ()42082221 (PubMedID)2-s2.0-105037850120 (Scopus ID)
Funder
Swedish Research Council, 2009-1093
Available from: 2026-05-18 Created: 2026-05-18 Last updated: 2026-06-02Bibliographically approved
Coumoundouros, C., Sami, A., Farrand, P., Sanderman, R., von Essen, L. & Woodford, J. (2026). e-Mental Health Intervention Preferences Among Informal Caregivers of Adults Living with Chronic Kidney Disease: Semistructured Interview Study. JMIR Human Factors, 13, Article ID e80962.
Open this publication in new window or tab >>e-Mental Health Intervention Preferences Among Informal Caregivers of Adults Living with Chronic Kidney Disease: Semistructured Interview Study
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2026 (English)In: JMIR Human Factors, E-ISSN 2292-9495, Vol. 13, article id e80962Article in journal (Refereed) Published
Abstract [en]

Background: Informal caregivers of people living with chronic kidney disease commonly experience mental health difficulties. However, there is currently limited access to scalable psychological interventions such as those using e-mental health platforms. Furthermore, there is an absence of such interventions tailored for this group of caregivers, which may limit acceptability.

Objective: To inform future e-mental health intervention development, this study aimed to explore preferences for e-mental health interventions among informal caregivers of people living with chronic kidney disease.

Methods: A total of 13 informal caregivers of people living with chronic kidney disease participated in semistructured interviews. Eligible informal caregivers lived in the United Kingdom and were recruited via nonprofit organizations and social media advertisements. Semistructured interviews followed a topic guide exploring caregivers’ e-mental health intervention preferences. Data were analyzed using manifest content analysis.

Results: A total of 4 categories and 13 subcategories were generated. “Design preferences” illustrates key intervention design features that were important to caregivers, such as involving caregivers and other interest-holders in the design process. “Content preferences” describes the information caregivers valued in an intervention, such as information about chronic kidney disease and resources to support caregivers. “Support preferences” reflects the characteristics of support caregivers preferred if support was available as part of the intervention, such as peer support and providing support that accommodates individual preferences. Lastly, “Dissemination preferences” describes methods caregivers recommended to promote intervention uptake, such as engaging communication strategies and trusted and accessible sources of information.

Conclusions: Caregivers identified a number of e-mental health intervention design and delivery preferences that should be considered when developing e-mental health interventions for caregivers of people living with chronic kidney disease. To ensure such interventions are acceptable, feasible, and relevant, co-design approaches should be adopted during the intervention development process.

Place, publisher, year, edition, pages
JMIR Publications, 2026
Keywords
Chronic Kidney disease, E-mental health, Informal caregiver, Intervention development
National Category
Nephrology Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:uu:diva-584026 (URN)10.2196/80962 (DOI)001741879200001 ()41945902 (PubMedID)2-s2.0-105035241427 (Scopus ID)
Available from: 2026-04-08 Created: 2026-04-08 Last updated: 2026-05-05Bibliographically approved
Blomberg, O., Sami, A., Farrand, P., Sörensdotter, R., Svedin, F., Brantnell, A., . . . Woodford, J. (2026). Experiences of formal and informal support among adult-daughter caregivers of people with dementia in Sweden: A qualitative study. Dementia, 25(4), 801-823
Open this publication in new window or tab >>Experiences of formal and informal support among adult-daughter caregivers of people with dementia in Sweden: A qualitative study
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2026 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 25, no 4, p. 801-823Article in journal (Refereed) Published
Abstract [en]

People with dementia are living longer in the community and reliance on informal caregivers is increasing. Few studies have focused on the experiences of adult-daughter caregivers (daughter caregivers), who may have increased risk of depression and lack of support compared with spousal caregivers. We aimed to explore the experiences of accessing and receiving formal and informal support among daughter caregivers of people living with dementia in Sweden. We conducted semi-structured interviews with 23 daughter caregivers. A topic guide was used to explore experiences of accessing and receiving formal and informal support in their caregiving role. We analyzed the interviews using reflexive thematic analysis. We generated two themes: Types of support, and Mismatched support. The first theme, with subthemes Sharing experiences, Professional support, and Getting some relief, captured the caregiver support context with different types of support accessed and received by daughter caregivers, with peer support and informational support identified as important components of caregiver support. The second theme, with subthemes Lack of tailoring to daughter caregivers’ needs and Difficulties navigating support, captured how daughter caregivers perceived existing support to be inadequate to meet their specific needs and the complex structure of available support limited their opportunities to access support. Daughter caregivers experience a mismatch between the type of support accessed and received and their specific support needs. Support better tailored to the needs and situation of daughter caregivers of people with dementia in Sweden is required. The potential of utilizing peer support for caregivers warrants further research.

Place, publisher, year, edition, pages
Sage Publications, 2026
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-568313 (URN)10.1177/14713012251376774 (DOI)001566513000001 ()40921072 (PubMedID)2-s2.0-105016878468 (Scopus ID)
Funder
Swedish Research Council, 2009-1093Uppsala University, MEDFARM 2017/836
Available from: 2025-10-01 Created: 2025-10-01 Last updated: 2026-07-29Bibliographically approved
Svedin, F., Österman Menander, I., Blomberg, O., Brantnell, A., von Essen, L., Farrand, P., . . . Woodford, J. (2026). Impact and experiences of co-developing complex interventions with public contributors. In: : . Paper presented at International Clinical Trials Methodology Conference, 14-17 September, 2026, Birmingham, United Kingdom.
Open this publication in new window or tab >>Impact and experiences of co-developing complex interventions with public contributors
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2026 (English)Conference paper, Oral presentation only (Other academic)
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:uu:diva-600632 (URN)
Conference
International Clinical Trials Methodology Conference, 14-17 September, 2026, Birmingham, United Kingdom
Funder
Swedish Research Council
Available from: 2026-09-30 Created: 2026-09-30 Last updated: 2026-10-05Bibliographically approved
Chiwanga, F., Philbert, R., Richards, D., Sami, A., Sugg, H. V., Österman Menander, I., . . . von Essen, L. (2026). "Nothing for Us Without Us": A Mixed Methods Study Examining the Acceptability, Feasibility, and Impact of Involving Guardians of Children With Acute Lymphoblastic Leukemia in Tanzania as Public Contributors. Cancer Medicine, 15(3), Article ID e71685.
Open this publication in new window or tab >>"Nothing for Us Without Us": A Mixed Methods Study Examining the Acceptability, Feasibility, and Impact of Involving Guardians of Children With Acute Lymphoblastic Leukemia in Tanzania as Public Contributors
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2026 (English)In: Cancer Medicine, E-ISSN 2045-7634, Vol. 15, no 3, article id e71685Article in journal (Refereed) Published
Abstract [en]

Introduction: In low- and middle-income countries (LMICs) such as Tanzania, non-adherence and treatment abandonment are major factors contributing to low childhood cancer survival rates. Providing guardians with reminders and information via an SMS intervention may increase adherence and reduce treatment abandonment. The purpose of the GuardiansCan project is to reduce guardians' abandonment of children's maintenance therapy for acute lymphoblastic lymphoma (ALL) in Tanzania, thereby increasing ALL survival rates in the country by developing and evaluating an SMS intervention. We report initial results from phase one of a mixed-method examination of public contribution activities in the GuardiansCan project. We aimed to: recruit guardians of children treated for ALL to a Guardian Advisory Board (GAB) to contribute to the design and conduct of Study II within the GuardiansCan project (Study II) and the wider GuardiansCan project; and examine the acceptability, feasibility, and impact of GAB members' contribution from the perspective of GAB members and public contribution coordinators (coordinators).

Methods: We adopted a convergent parallel mixed-methods design, using impact logs and semi-structured interviews, with data integrated at the point of analysis. During four workshops, GAB members provided suggestions and recommendations, which were recorded in impact logs. GAB members and coordinators were interviewed about the acceptability, feasibility, and impact of GAB members' contributions.

Results: Nine guardians were recruited. GAB members made 63 suggestions and recommendations, of which 50 (79%) were implemented. Semi-structured interviews resulted in seven categories: Meaning and value, Motivation and willingness to volunteer, Suggestions and areas for improvement, Barriers and challenges, Facilitators, Personal impact, and Research impact.

Conclusion: Findings suggest GAB members' contribution was acceptable and feasible, and had an impact on both the research and GAB members themselves. Findings can inform how to meaningfully involve public contributors in LMICs.

Place, publisher, year, edition, pages
John Wiley & Sons, 2026
Keywords
acute lymphoblastic leukemia, childhood cancer, guardians, mixed methods, public contribution, treatment adherence
National Category
Cancer and Oncology Public Health, Global Health and Social Medicine
Identifiers
urn:nbn:se:uu:diva-582475 (URN)10.1002/cam4.71685 (DOI)001705488900001 ()41772304 (PubMedID)2-s2.0-105031873491 (Scopus ID)
Funder
Swedish Research Council, 2009-1093
Available from: 2026-03-17 Created: 2026-03-17 Last updated: 2026-03-17Bibliographically approved
Awortwe, V., Maharani, F., Daivadanam, M., Adjorlolo, S., Olsson, E. M., von Essen, L., . . . Woodford, J. (2026). Prevalence and social determinants of anxiety and depressive disorders and symptoms among adults in Ghana: A systematic review and meta-analysis. Global Mental Health, 13, Article ID e5.
Open this publication in new window or tab >>Prevalence and social determinants of anxiety and depressive disorders and symptoms among adults in Ghana: A systematic review and meta-analysis
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2026 (English)In: Global Mental Health, E-ISSN 2054-4251, Vol. 13, article id e5Article in journal (Refereed) Published
Abstract [en]

Anxiety and depressive disorders are global health challenges, placing a significant burden on adults and healthcare systems in low- and middle-income countries (LMICs), such as Ghana. Social determinants of mental health, including poor healthcare access and poverty, may be associated with their prevalence. However, a paucity of prevalence data poses challenges for intervention planning and resource allocation. This review aimed to (1) examine the prevalence of anxiety and depressive disorders and symptoms among adults in Ghana, and (2) explore social determinants of mental health potentially associated with anxiety and depressive disorders and symptoms. We searched electronic databases and secondary sources from inception until September 30, 2024. Meta-analyses were performed to estimate the pooled prevalence. Narrative synthesis explored social determinants potentially associated with anxiety and depressive disorders and symptoms. We included 38 studies (22,587 adults). Pooled point prevalence of anxiety and depressive disorders and symptoms was 40.3% (95% confidence interval [CI]: 31.8-49.4%) and 33.0% (95% CI: 27.7-38.8%), respectively. Most studies (37 studies) reported the prevalence of symptoms and not disorders. Social determinants of mental health, including educational attainment and urban environment, were associated with higher levels of anxiety symptoms, while ethnicity and traumatic experiences were associated with higher levels of depressive symptoms. There was a high degree of heterogeneity, and the majority of studies used self-report screening tools, which may have skewed prevalence estimates. More than a third of adults in Ghana were found to experience anxiety and depressive symptoms, and social determinants of mental health may be associated with prevalence. High-quality research and contextually appropriate interventions targeting the identified social determinants of mental health associated with anxiety and depressive symptoms are needed to reduce disparities and improve the mental well-being of adults in Ghana.

Place, publisher, year, edition, pages
Cambridge University Press, 2026
Keywords
prevalence and social determinants of mental health, anxiety disorders and symptoms, depressive disorders and symptoms, sustainable development goals
National Category
Psychiatry Public Health, Global Health and Social Medicine
Identifiers
urn:nbn:se:uu:diva-577420 (URN)10.1017/gmh.2025.10122 (DOI)001660542900001 ()41608302 (PubMedID)2-s2.0-105026040321 (Scopus ID)
Available from: 2026-01-26 Created: 2026-01-26 Last updated: 2026-09-07Bibliographically approved
Thiblin, E., Reuther, C., Bergqvist, M., Huynh, T., Lundgren, J., Rösler, S., . . . von Essen, L. (2026). Public contribution in qualitative research with parents of children treated for cancer: Description of and reflections on a collaborative data analysis approach. Health Expectations, 29(1), Article ID e70586.
Open this publication in new window or tab >>Public contribution in qualitative research with parents of children treated for cancer: Description of and reflections on a collaborative data analysis approach
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2026 (English)In: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 29, no 1, article id e70586Article in journal (Refereed) Published
Abstract [en]

  Background

Collaborative data analysis (CDA) in qualitative research is an approach for working with public contributors as co-researchers in analysing data. Different approaches have been outlined in a Best Practice Framework for CDA: (1) consultation; (2) development; (3) application; and (4) development and application. Four characteristics of successful CDA are also presented; that the CDA process is: (1) co-produced; (2) realistic within available time and resources; (3) manageable for public contributors; and (4) effective in handling group dynamics and expectations. We adopted a development and application approach to CDA to analyse data from a qualitative study embedded within the single-arm feasibility trial ENGAGE, exploring the acceptability and feasibility of a cognitive behavioural therapy intervention (EJDeR) for parents of children treated for cancer, and study procedures.

Objectives

Overall aim: to describe and reflect on the CDA approach used. Specific objectives: to (1) describe the CDA approach used; (2) reflect on the CDA approach used and map reflections onto characteristics of successful CDA; (3) summarise the potential impact of the CDA approach used on findings; and (4) report the costs of the public contribution activities.

Methods

Three public contributors collaborated with three research team members to analyse 36 qualitative interviews using the Framework Method. Public contributors received training and supervision, completed all analysis steps, independently developed coding frameworks, applied them to the data and interpreted findings. Together with research team members, they took part in a workshop to reflect on the CDA approach used, with reflections mapped onto four characteristics of successful CDA.

Findings

In the reflection workshop, the CDA approach was described as including the characteristics of successful CDA, for example, that public contributors handled demands of the process well, and that relationships and power dynamics were well managed. Potential impact on findings included public contributors bringing in nuances to the analysis overlooked by research team members, for example, their analysis highlighted that participants in ENGAGE experienced difficulties differentiating between EJDeR and ENGAGE study procedures. Public contributors and research team members categorised data in slightly different ways. The total cost for public contribution activities was ≈21,963 EUR.

Conclusion

The CDA approach used extends the Best Practice Framework for CDA by providing an example of CDA adopting a development and application approach. Our description of the CDA approach used may inform other researchers interested in CDA, and contributes to ongoing conversations about embedding ethical and equitable public contribution throughout the research lifecycle.

Patient or Public Contribution

Public contributors and research team members contributed to the reflections described and writing, editing, and reviewing the manuscript.

Place, publisher, year, edition, pages
John Wiley & Sons, 2026
National Category
Other Health Sciences
Identifiers
urn:nbn:se:uu:diva-569835 (URN)10.1111/hex.70586 (DOI)001681108700001 ()41620850 (PubMedID)2-s2.0-105029069751 (Scopus ID)
Available from: 2025-10-17 Created: 2025-10-17 Last updated: 2026-05-18Bibliographically approved
Blomberg, O., Sami, A., Farrand, P., Sörensdotter, R., Svedin, F., von Essen, L., . . . Woodford, J. (2026). “We are daughters, we are not lovable slaves”: Challenges experienced by adult daughters caring for a parent with dementia – a qualitative study. Aging & Mental Health, 30(6), 1251-1262
Open this publication in new window or tab >>“We are daughters, we are not lovable slaves”: Challenges experienced by adult daughters caring for a parent with dementia – a qualitative study
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2026 (English)In: Aging & Mental Health, ISSN 1360-7863, E-ISSN 1364-6915, Vol. 30, no 6, p. 1251-1262Article in journal (Refereed) Published
Abstract [en]

Objectives

Experiences of daughter caregivers are underrepresented in the broader caregiving literature, with studies commonly focusing on spousal caregivers. We aimed to explore challenges experienced by daughter caregivers, reporting varying severity of depressive symptoms, of a parent with dementia in Sweden. This study is situated within a wider research program to inform the development of psychological support for this underserved caregiver group.

Method

Following a semi-structured topic guide, we interviewed 23 daughter caregivers. We used reflexive thematic analysis to analyze the interviews. We did not compare and contrast challenges expressed by daughter caregivers experiencing different levels of depression severity; however, symptom severity is reported to contextualize findings.

Results

We generated one overarching theme, Changing Roles and Expectations Over Time, and four themes: Caregiver Role – Expectations; Puzzle of Life – Balancing Roles; Relationship with the Parent – Reciprocity, and Anticipating the Inevitable – Loss and Grief. Daughter caregivers reported challenges balancing multiple roles, difficulties prioritizing their own well-being, relationship difficulties with their parent, and anticipatory grief, with challenges changing over the dementia trajectory.

Conclusion

Future research should explore support needs across specific phases of the dementia trajectory to inform the development of tailored psychological support.

Place, publisher, year, edition, pages
Routledge, 2026
National Category
Health Sciences Psychology
Identifiers
urn:nbn:se:uu:diva-570441 (URN)10.1080/13607863.2025.2612173 (DOI)001664996800001 ()2-s2.0-105028097955 (Scopus ID)
Available from: 2025-10-24 Created: 2025-10-24 Last updated: 2026-06-22Bibliographically approved
Carlsson, T., Kissiti, R., Jirwe, M., Mattsson, E., von Essen, L. & Gottvall, M. (2025). Addressing the Health Needs of Underserved Populations Through Public Contribution: Prioritisation and Development of a Peer Support Intervention for Sexual and Gender Minority Forced Migrants. Health Expectations, 28(3), Article ID e70277.
Open this publication in new window or tab >>Addressing the Health Needs of Underserved Populations Through Public Contribution: Prioritisation and Development of a Peer Support Intervention for Sexual and Gender Minority Forced Migrants
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2025 (English)In: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 28, no 3, article id e70277Article in journal (Refereed) Published
Abstract [en]

Introduction

The health of underserved populations, including sexual and gender minority forced migrants, is a pressing global concern. Public contribution in research has the potential to enhance prioritisation and aid in intervention development, but has been criticised due to a lack of sufficient diversity and engagement with underserved populations.

Methods

The core research team conducted eight workshops together with eight experts by lived experience to prioritise and guide future peer support intervention research. Activities included brainstorming, pathway mappings, ranking procedures, storytelling exercises, photovoice sessions and individual open-ended writing sessions. Open-ended reflective meetings and manifest content analysis of material, as well as documentation, guided the progress towards final results.

Results

Peer support was identified as an intervention with the potential to reduce mental health burdens, enhance the capacity to integrate into society and provide access to basic needs. Peer support interventions aiming to reduce health inequities by promoting language proficiency and employment attainment were identified as prioritised areas. A range of considerations and barriers regarding the modality of interventions, the training of peer supporters and recruitment strategies needs further examination in research.

Conclusions

Our findings illustrate the importance of public contribution when planning research addressing support for underserved and marginalised populations. Public contribution efforts targeting underserved populations such as ours will help researchers gain an in-depth understanding of prioritised research questions and pragmatic study procedures. In regard to research for sexual and gender minority forced migrants, we recommend prioritisation of intervention development that promotes mental health and reduces loneliness through support from peers in group settings and from peer mentors, informational support and capacity-building.

Patient or Public Contribution

Representatives acting as experts by lived experience contributed as research partners throughout the procedures and workshops.

Place, publisher, year, edition, pages
John Wiley & Sons, 2025
Keywords
forced migrants, patient and public involvement, priority setting, sexual and gender minorities
National Category
Public Health, Global Health and Social Medicine Gender Studies
Identifiers
urn:nbn:se:uu:diva-556663 (URN)10.1111/hex.70277 (DOI)001481540300001 ()40326496 (PubMedID)2-s2.0-105004461669 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, GD-2022/0031
Available from: 2025-05-16 Created: 2025-05-16 Last updated: 2025-05-16Bibliographically approved
Projects
ParentsCan; Uppsala University; Publications
Thiblin, E., Reuther, C., Bergqvist, M., Huynh, T., Lundgren, J., Rösler, S., . . . von Essen, L. (2026). Public contribution in qualitative research with parents of children treated for cancer: Description of and reflections on a collaborative data analysis approach. Health Expectations, 29(1), Article ID e70586. Thiblin, E. (2025). After Childhood Cancer: The Feasibility and Acceptability of Guided Internet-Administered CBT for Parents. (Doctoral dissertation). Uppsala: Acta Universitatis UpsaliensisReuther, C., von Essen, L., Mustafa, M. I., Saarijärvi, M. & Woodford, J. (2025). Engagement With an Internet-Administered, Guided, Low-Intensity Cognitive Behavioral Therapy Intervention for Parents of Children Treated for Cancer: Analysis of Log-Data From the ENGAGE Feasibility Trial. JMIR Formative Research, 9, Article ID e67171. Thiblin, E., Lundgren, J., Bergqvist, M., Huynh, T., Reuther, C., Rösler, S., . . . von Essen, L. (2025). The acceptability and feasibility of an internet-administered, guided, low-intensity cognitive behavioural therapy intervention for parents of children treated for cancer: findings from a qualitative study involving public contributors. BMC Psychiatry, 25(1), Article ID 499. Reuther, C., Lundgren, J., Gottvall, M., Ljungberg, J., Woodford, J. & von Essen, L. (2024). E-therapists' views on the acceptability and feasibility of an internet-administered, guided, low-intensity cognitive behavioural therapy intervention for parents of children treated for cancer: A qualitative study. Digital Health, 10, Article ID 20552076241260513. Woodford, J., Reuther, C., Ljungberg, J. L. & von Essen, L. (2024). Involving parents of children treated for cancer in Sweden as public contributors to inform the design and conduct of an evaluation of internet-administered self-help for parents of children treated for cancer: a protocol. Research Involvement and Engagement, 10(1), Article ID 2. Lundgren, J., Thiblin, E., Lutvica, N., Reuther, C., Farrand, P., Woodford, J. & von Essen, L. (2023). 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. Psycho-Oncology, 32(2), 237-246Thiblin, E., Woodford, J., Reuther, C., Lundgren, J., Lutvica, N. & von Essen, L. (2023). Internet‐administered, low‐intensity cognitive behavioral therapy for parents of children treated for cancer: A feasibility trial (ENGAGE). Cancer Medicine, 12(5), 6225-6243Hagström, J., Woodford, J., von Essen, A., Lähteenmäki, P. & von Essen, L. (2022). 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. BMJ Open, 12(4), Article ID e056758. Thiblin, E., Woodford, J., Öhman, M. & von Essen, L. (2022). The effect of personalised versus non-personalised study invitations on recruitment within the ENGAGE feasibility trial: an embedded randomised controlled recruitment trial. BMC Medical Research Methodology, 22(1), Article ID 65.
GuardiansCan; Uppsala University; Publications
Chiwanga, F., Woodford, J., Masika, G., Richards, D. A., Savi, V. & von Essen, L. (2024). 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. Cancer Medicine, 13(14), Article ID e70034. Chiwanga, F. S., Woodford, J., Masika, G. M., Richards, D. A., Savi, V. & von Essen, L. (2023). 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. JMIR Research Protocols, 12, Article ID 48799. Chiwanga, F., Woodford, J., Masika, G. M., Richards, D., Savi, V. & von Essen, L. (2023). Development and feasibility of a mhealth intervention to improve guardians’ adherence to children’s leukemia treatment in tanzania (guardianscan project protocol). In: : . Paper presented at 14th AORTIC International Conference on Cancer in Africa. Chiwanga, F., Woodford, J., Masika, G. M., Richards, D., Savi, V. & von Essen, L. (2023). Informing the design and conduct of the guardianscan project by involving guardians of children with leukemia as public contributors (protocol). In: : . Paper presented at The 14th AORTIC International Conference on Cancer in Africa. Masika, G. M., Gottvall, M., Kohi, T. W., von Essen, L. & Dol, J. S. (2020). Concerns and Needs of Support Among Guardians of Children on Cancer Treatment in Dar es Salaam: A Qualitative Study. Cancer Nursing, 43(6), E342-E348Kohi, T. W., von Essen, L., Masika, G. M., Gottvall, M. & Dol, J. (2019). Cancer-related concerns and needs among young adults and children on cancer treatment in Tanzania: A qualitative study. BMC Cancer, 19(82)
Treatment of traumatic stress among parents of children with cancer with cognitive behavioural therapy over the Internet [2010-03042_VR]; Uppsala UniversityDevelopment, testing, and evaluation of an online, guided, cognitive behavioral-based intervention for parents of children previously treated for cancer [2014-03337_VR]; Uppsala UniversityTesting and evaluation of an internet-administered, guided, cognitive-behavioural therapy based, self-help intervention, ENGAGE for parents of children treated for cancer [2018-02578_VR]; Uppsala University; Publications
Woodford, J., Reuther, C., Asberg Dun, L., Farrand, P., Johansen, K., Richards, D. A., . . . von Essen, L. (2026). A workbook- and audio-administered, telephone-guided, low-intensity cognitive behavioural therapy intervention (EJDeR) for parents of persons treated for cancer during childhood: protocol for the CHANGE-pilot randomised controlled trial. BMJ Open, 16(9), Article ID e124267. Thiblin, E., Reuther, C., Bergqvist, M., Huynh, T., Lundgren, J., Rösler, S., . . . von Essen, L. (2026). Public contribution in qualitative research with parents of children treated for cancer: Description of and reflections on a collaborative data analysis approach. Health Expectations, 29(1), Article ID e70586. Lundgren, J., Reuther, C., Farrand, P., Lutvica, N., Thiblin, E., von Essen, L. & Woodford, J. (2025). "It is today that counts, and today everything is fine": coping strategies utilized by parents of children treated for cancer who seek psychological support - a qualitative study. BMC Psychology, 13(1), Article ID 565. Woodford, J., Reuther, C., Ljungberg, J. L. & von Essen, L. (2024). Involving parents of children treated for cancer in Sweden as public contributors to inform the design and conduct of an evaluation of internet-administered self-help for parents of children treated for cancer: a protocol. Research Involvement and Engagement, 10(1), Article ID 2.
Increasing guardians’ adherence to children’s follow-up care after treatment for leukemia in Tanzania: Development and feasibility of a mobile Health intervention [2020-04716_VR]; Uppsala University; Publications
Chiwanga, F., Philbert, R., Richards, D., Sami, A., Sugg, H. V., Österman Menander, I., . . . von Essen, L. (2026). "Nothing for Us Without Us": A Mixed Methods Study Examining the Acceptability, Feasibility, and Impact of Involving Guardians of Children With Acute Lymphoblastic Leukemia in Tanzania as Public Contributors. Cancer Medicine, 15(3), Article ID e71685.
U-CARE publications with interns as co-authors; ; Publications
Awortwe, V., Maharani, F., Daivadanam, M., Adjorlolo, S., Olsson, E. M., von Essen, L., . . . Woodford, J. (2026). Prevalence and social determinants of anxiety and depressive disorders and symptoms among adults in Ghana: A systematic review and meta-analysis. Global Mental Health, 13, Article ID e5. Coumoundouros, C., Mårtensson, E., Ferraris, G., Zuidberg, J. M., von Essen, L., Sanderman, R. & Woodford, J. (2023). Implementation of e-mental health interventions for informal caregivers – a systematic review of what we know and where to go next. In: : . Paper presented at 12th Swedish Congress on Internet Interventions (SweSRII). Uppsala, SwedenCoumoundouros, C., El Arab, R. A., Farrand, P., Hamilton, A., Sanderman, R., von Essen, L. & Woodford, J. (2023). Potential Implementers’ Perspectives on the Development and Implementation of an e–Mental Health Intervention for Caregivers of Adults With Chronic Kidney Disease: Qualitative Interview Study. JMIR Human Factors, 10, Article ID e51461. Coumoundouros, C., El Arab, R. A., Farrand, P., Hamilton, A., Sanderman, R., von Essen, L. & Woodford, J. (2023). Stakeholder perspectives on implementation of e-mental health interventions for caregivers of adults with kidney conditions. In: : . Paper presented at 37th Annual Conference of the European Health Psychology Society (EHPS). Bremen, GermanyFerraris, G., Bei, E., Coumoundouros, C., Woodford, J., Saita, E., Sanderman, R. & Hagedoorn, M. (2023). The interpersonal process model of intimacy, burden and communal motivation to care in a multinational group of informal caregivers. Journal of Social and Personal Relationships, 40(10), 3414-3436Ferraris, G., Dang, S., Woodford, J. & Hagedoorn, M. (2022). Dyadic Interdependence in Non-spousal Caregiving Dyads’ Wellbeing: A Systematic Review. Frontiers in Psychology, 13, Article ID 882389. Coumoundouros, C., Mårtensson, E., Ferraris, G., Zuidberg, J. M., von Essen, L., Sanderman, R. & Woodford, J. (2022). 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. JMIR Mental Health, 9(11), Article ID e41891. Ferraris, G., Bei, E., Coumoundouros, C., Woodford, J., von Essen, L., Saita, E., . . . Hagedoorn, M. (2022). The role of perceived responsiveness in a multinational group of caregivers: a moderated mediation model. In: EHPS 2022 36th Annual Conference of the European Health Psychology Society, 23-27 August, 2022, Bratislava, Slovakia: . Paper presented at EHPS 2022 36th Annual Conference of the European Health Psychology Society, 23-27 August, 2022, Bratislava, Slovakia. Bratislava, SlovakiaCoumoundouros, C., Mårtensson, E., Ferraris, G., von Essen, L., Sanderman, R. & Woodford, J. (2021). Barriers and facilitators to implementing e-mental health interventions – a systematic review focusing in on interventions for informal cancer and dementia caregivers. In: : . Paper presented at The 22nd International Psycho-Oncology Society World Congress (IPOS 2021). OnlineWoodford, J., Månberg, J., Cajander, Å., Enebrink, P., Harila-Saari, A. H., Hagström, J., . . . von Essen, L. (2021). Help-seeking behaviour and attitudes towards internet-administered psychological support among adolescent and young adults previously treated for cancer during childhood: Protocol for a survey and embedded qualitative interview study in Sweden. BMJ Open, 11, Article ID e041350.
Test and evaluation of a co-created, guided, CBT-SH, e-MH intervention for parents of children treated for cancer: pilot RCT and superiority RCT with embedded mixed methods process evaluation [2021-00868_VR]; Uppsala University; Publications
Woodford, J., Reuther, C., Asberg Dun, L., Farrand, P., Johansen, K., Richards, D. A., . . . von Essen, L. (2026). A workbook- and audio-administered, telephone-guided, low-intensity cognitive behavioural therapy intervention (EJDeR) for parents of persons treated for cancer during childhood: protocol for the CHANGE-pilot randomised controlled trial. BMJ Open, 16(9), Article ID e124267. Thiblin, E., Reuther, C., Bergqvist, M., Huynh, T., Lundgren, J., Rösler, S., . . . von Essen, L. (2026). Public contribution in qualitative research with parents of children treated for cancer: Description of and reflections on a collaborative data analysis approach. Health Expectations, 29(1), Article ID e70586. Lundgren, J., Reuther, C., Farrand, P., Lutvica, N., Thiblin, E., von Essen, L. & Woodford, J. (2025). "It is today that counts, and today everything is fine": coping strategies utilized by parents of children treated for cancer who seek psychological support - a qualitative study. BMC Psychology, 13(1), Article ID 565. Woodford, J., Reuther, C., Ljungberg, J. L. & von Essen, L. (2024). Involving parents of children treated for cancer in Sweden as public contributors to inform the design and conduct of an evaluation of internet-administered self-help for parents of children treated for cancer: a protocol. Research Involvement and Engagement, 10(1), Article ID 2.
ParentsCan; Uppsala University; Publications
Thiblin, E., Reuther, C., Bergqvist, M., Huynh, T., Lundgren, J., Rösler, S., . . . von Essen, L. (2026). Public contribution in qualitative research with parents of children treated for cancer: Description of and reflections on a collaborative data analysis approach. Health Expectations, 29(1), Article ID e70586. Thiblin, E. (2025). After Childhood Cancer: The Feasibility and Acceptability of Guided Internet-Administered CBT for Parents. (Doctoral dissertation). Uppsala: Acta Universitatis UpsaliensisReuther, C., von Essen, L., Mustafa, M. I., Saarijärvi, M. & Woodford, J. (2025). Engagement With an Internet-Administered, Guided, Low-Intensity Cognitive Behavioral Therapy Intervention for Parents of Children Treated for Cancer: Analysis of Log-Data From the ENGAGE Feasibility Trial. JMIR Formative Research, 9, Article ID e67171. Thiblin, E., Lundgren, J., Bergqvist, M., Huynh, T., Reuther, C., Rösler, S., . . . von Essen, L. (2025). The acceptability and feasibility of an internet-administered, guided, low-intensity cognitive behavioural therapy intervention for parents of children treated for cancer: findings from a qualitative study involving public contributors. BMC Psychiatry, 25(1), Article ID 499. Reuther, C., Lundgren, J., Gottvall, M., Ljungberg, J., Woodford, J. & von Essen, L. (2024). E-therapists' views on the acceptability and feasibility of an internet-administered, guided, low-intensity cognitive behavioural therapy intervention for parents of children treated for cancer: A qualitative study. Digital Health, 10, Article ID 20552076241260513. Woodford, J., Reuther, C., Ljungberg, J. L. & von Essen, L. (2024). Involving parents of children treated for cancer in Sweden as public contributors to inform the design and conduct of an evaluation of internet-administered self-help for parents of children treated for cancer: a protocol. Research Involvement and Engagement, 10(1), Article ID 2. Lundgren, J., Thiblin, E., Lutvica, N., Reuther, C., Farrand, P., Woodford, J. & von Essen, L. (2023). 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. Psycho-Oncology, 32(2), 237-246Thiblin, E., Woodford, J., Reuther, C., Lundgren, J., Lutvica, N. & von Essen, L. (2023). Internet‐administered, low‐intensity cognitive behavioral therapy for parents of children treated for cancer: A feasibility trial (ENGAGE). Cancer Medicine, 12(5), 6225-6243Hagström, J., Woodford, J., von Essen, A., Lähteenmäki, P. & von Essen, L. (2022). 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. BMJ Open, 12(4), Article ID e056758. Thiblin, E., Woodford, J., Öhman, M. & von Essen, L. (2022). The effect of personalised versus non-personalised study invitations on recruitment within the ENGAGE feasibility trial: an embedded randomised controlled recruitment trial. BMC Medical Research Methodology, 22(1), Article ID 65.
GuardiansCan; Uppsala University; Publications
Chiwanga, F., Woodford, J., Masika, G., Richards, D. A., Savi, V. & von Essen, L. (2024). 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. Cancer Medicine, 13(14), Article ID e70034. Chiwanga, F. S., Woodford, J., Masika, G. M., Richards, D. A., Savi, V. & von Essen, L. (2023). 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. JMIR Research Protocols, 12, Article ID 48799. Chiwanga, F., Woodford, J., Masika, G. M., Richards, D., Savi, V. & von Essen, L. (2023). Development and feasibility of a mhealth intervention to improve guardians’ adherence to children’s leukemia treatment in tanzania (guardianscan project protocol). In: : . Paper presented at 14th AORTIC International Conference on Cancer in Africa. Chiwanga, F., Woodford, J., Masika, G. M., Richards, D., Savi, V. & von Essen, L. (2023). Informing the design and conduct of the guardianscan project by involving guardians of children with leukemia as public contributors (protocol). In: : . Paper presented at The 14th AORTIC International Conference on Cancer in Africa. Masika, G. M., Gottvall, M., Kohi, T. W., von Essen, L. & Dol, J. S. (2020). Concerns and Needs of Support Among Guardians of Children on Cancer Treatment in Dar es Salaam: A Qualitative Study. Cancer Nursing, 43(6), E342-E348Kohi, T. W., von Essen, L., Masika, G. M., Gottvall, M. & Dol, J. (2019). Cancer-related concerns and needs among young adults and children on cancer treatment in Tanzania: A qualitative study. BMC Cancer, 19(82)
Treatment of traumatic stress among parents of children with cancer with cognitive behavioural therapy over the Internet [2010-03042_VR]; Uppsala UniversityAdaptation, testing and evaluation of an internet-based program for reducing cardiac distress in people surviving an MI before the age of fifty-five [2023-02220_VR]; Uppsala UniversityACT-ALL: Reducing Guardians’ Abandonment of Children’s Treatment for Acute Lymphoblastic Leukemia in Tanzania: Development and Evaluation of an SMS Intervention [2025-02402_VR]; Uppsala University; Publications
Chiwanga, F., Philbert, R., Richards, D., Sami, A., Sugg, H. V., Österman Menander, I., . . . von Essen, L. (2026). "Nothing for Us Without Us": A Mixed Methods Study Examining the Acceptability, Feasibility, and Impact of Involving Guardians of Children With Acute Lymphoblastic Leukemia in Tanzania as Public Contributors. Cancer Medicine, 15(3), Article ID e71685.
AIMAIM - Addressing healthcare Inequality through social deteriMinants of health; Uppsala University; Publications
Rajabzadeh, V., Sami, A., Harila, A. H., Richards, D. A., Woodford, J. & von Essen, L. (2026). Cancer survival and its social determinants among children with a migrant background: systematic review protocol. BMJ Open, 16(5), Article ID e116611. Awortwe, V., Maharani, F., Daivadanam, M., Adjorlolo, S., Olsson, E. M., von Essen, L., . . . Woodford, J. (2026). Prevalence and social determinants of anxiety and depressive disorders and symptoms among adults in Ghana: A systematic review and meta-analysis. Global Mental Health, 13, Article ID e5. Awortwe, V., Daivadanam, M., Adjorlolo, S., Olsson, E. M. G., Coumoundouros, C. & Woodford, J. (2024). Prevalence and social determinants of anxiety and depression among adults in Ghana: a systematic review and meta-analysis protocol. BMJ Open, 14(4), e081927-e081927Awortwe, V., Maharani, F., Daivadanam, M., Adjorlolo, S., Olsson, E., Rajabzadeh, V. & Woodford, J. (2024). Prevalence and social determinants of anxiety and depression among adults in Ghana systematic review. Paper presented at 17th European Public Health Conference. European Journal of Public Health, 34(Supplement_3), Article ID ckae144.2220.
ACT-ALL: Reducing Guardians’ Abandonment of Children’s Treatment for Acute Lymphoblastic Leukemia in Tanzania: Development and Evaluation of an SMS Intervention [2025-02402_VR]; Uppsala University; Publications
Chiwanga, F., Philbert, R., Richards, D., Sami, A., Sugg, H. V., Österman Menander, I., . . . von Essen, L. (2026). "Nothing for Us Without Us": A Mixed Methods Study Examining the Acceptability, Feasibility, and Impact of Involving Guardians of Children With Acute Lymphoblastic Leukemia in Tanzania as Public Contributors. Cancer Medicine, 15(3), Article ID e71685.
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