Preferences of support and barriers and facilitators to help-seeking in pregnant women with severe fear of childbirth in Sweden: a mixed-method study.

BACKGROUND: There are few support interventions for women with fear of childbirth tailored towards type of fears and parity. To inform the future development of an acceptable and relevant intervention for women with severe fear of childbirth, primary objectives were to examine: (1) pregnant women's experiences of and preferences for support and (2) barriers and facilitators to help-seeking. Secondary objectives were to examine if there are any differences based on pregnant women's parity. METHODS: Pregnant women with a severe fear of childbirth in Sweden completed an online cross-sectional survey between February and September 2022. Severe fear of childbirth was measured using the fear of childbirth scale. Quantitative data were analysed using descriptive and inferential statistics and free answers were analysed using manifest content analysis. A contiguous approach to integration was adopted with qualitative and quantitative findings reported separately. RESULTS: In total, 609 participants, 364 nulliparous and 245 parous women, had severe fear of childbirth. The main category "A twisting road to walk towards receiving support for fear of childbirth" was explored and described by the generic categories: Longing for support, Struggling to ask for support, and Facilitating aspects of seeking support. Over half (63.5%), of pregnant women without planned or ongoing treatment, wanted support for fear of childbirth. Most (60.2%) pregnant women with ongoing or completed fear of childbirth treatment regarded the treatment as less helpful or not at all helpful. If fear of childbirth treatment was not planned, 35.8% of women would have liked to have received treatment. Barriers to help seeking included stigma surrounding fear of childbirth, previous negative experiences with healthcare contacts, fear of not being believed, fear of not being listened to, and discomfort of having to face their fears. Facilitators to help seeking included receiving respectful professional support that was easily available, flexible, and close to home. CONCLUSIONS: Most pregnant women with severe fear of childbirth felt unsupported during pregnancy. Findings emphasise the need to develop individual and easily accessible psychological support for women with severe fear of childbirth, delivered by trained professionals with an empathetic and respectful attitude.

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.

BACKGROUND: Despite 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. METHODS: Semi-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. RESULTS: Content 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. CONCLUSIONS: The 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. TRIAL REGISTRATION/PROTOCOL: Not applicable.

"Systems seem to get in the way": a qualitative study exploring experiences of accessing and receiving support among informal caregivers of people living with chronic kidney disease.

BACKGROUND: The well-being of informal caregivers of people living with chronic kidney disease is influenced by their experiences with support, however, few studies have focused on exploring these experiences. This study aimed to explore informal caregivers' experiences accessing and receiving support while caring for someone living with chronic kidney disease. METHODS: Informal caregivers of people living with chronic kidney disease (n = 13) in the United Kingdom were primarily recruited via community organisations and social media adverts to participate in semi-structured interviews. Interviews explored support needs, experiences of receiving support from different groups (e.g. healthcare professionals, family/friends), and barriers and facilitators to accessing support. Support was understood as including emotional, practical, and informational support. Data were analysed using reflexive thematic analysis. RESULTS: Three themes were generated: (1) "Systems seem to get in the way" - challenges within support systems, illustrating the challenges informal caregivers encountered when navigating complex support systems; (2) Relying on yourself, describing how informal caregivers leveraged their existing skills and networks to access support independently, while recognising the limitations of having to rely on yourself to find support; and (3) Support systems can "take the pressure off", showing how support systems were able to help informal caregivers cope with the challenges they experienced if certain conditions were met. CONCLUSIONS: In response to the challenges informal caregivers experienced when seeking support, improvements are needed to better consider informal caregiver needs within healthcare systems, and to develop interventions tailored to informal caregiver needs and context. Within the healthcare system, informal caregivers may benefit from system navigation support and better integration within healthcare teams to ensure their informational support needs are met. New interventions developed to support informal caregivers should fit within their existing support systems and incorporate the qualities of support, such as empathy, that were valued. Additionally, use of an equity framework and user-centered design approaches during intervention development could help ensure interventions are accessible and acceptable.

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.

INTRODUCTION: Public contribution in research can facilitate the design and conduct of meaningful research, resulting in feasible and sustainable solutions to healthcare challenges. However, the evidence concerning the acceptability, feasibility, and impact of public contribution in research is limited. We will embed a mixed-method examination of public contribution activities into the CHANGE trial. The overall aim of the CHANGE trial is to evaluate the efficacy and cost-effectiveness of an internet-administered, guided, low-intensity cognitive behavioral therapy-based self-help intervention (EJDeR) plus treatment as usual (TAU) versus TAU for symptoms of depression and/or Generalized Anxiety Disorder in a superiority randomized controlled trial with an internal pilot phase. In this protocol we describe how we aim to: (1) involve parents of children treated for cancer in the managing and undertaking, analysis and interpretation, and dissemination phases of the CHANGE trial; and (2) examine the acceptability, feasibility, and perceived impact of Parent Advisory Board contribution to the trial from the perspective of board members and public contribution coordinators. METHODS: We will recruit around six parents of children treated for cancer to the Parent Advisory Board. Board members will contribute throughout the trial during online workshops and steering group meetings. An impact log will be used during workshops to record activities and examine the perceived impact of activities according to board members and public contribution coordinators, including anticipated and unanticipated changes to the research process and potential benefits and harms. Activities will be reported using the Guidance for Reporting Involvement of Patients and the Public checklist. We will conduct semi-structured interviews with board members and public contribution coordinators 6 months after the board is established and at the end of the trial to examine the acceptability, feasibility, and perceived impact of public contribution activities. We will also conduct interviews with board members and public contribution coordinators who withdraw participation. Findings will be reported in accordance with the Standards for Reporting Qualitative Research checklist. DISCUSSION: We hope adding public contribution to the CHANGE trial will provide guidance on how to embed public contribution in research and add to the evidence base concerning the impact of public contribution.

Involving the public in research can help improve research. However, we do not know so much about what impact it has. Here, we describe how we will involve parents of children treated for cancer in the CHANGE trial and how we will examine the impact of their contribution.Even years after end of treatment parents can experience difficult emotions, such as depression and anxiety. We have therefore developed an internet-administered self-help intervention called EJDeR for parents of children treated for cancer. In the CHANGE trial we will evaluate whether EJDeR reduces parent's depression and anxiety.We will recruit around six parents to a Parent Advisory Board. Board members will help us to: (1) manage and undertake the CHANGE trial including designing trial procedures e.g., participant-facing material and interview guides; and to steer the trial e.g., discuss trial progress and produce research updates; (2) interpret findings; and (3) plan how to communicate findings to parents and the surrounding community.Board members will participate in online workshops. We will record all activities and whether, and if so how, activities are perceived to impact on the CHANGE trial. Board members will also participate in steering meetings with members of our research team. We will interview board members and public contribution coordinators about their experiences working with us and contributing to the CHANGE trial. We hope this approach will help us and other researchers to understand the potential impact of public contribution on research.

Prevalence and social determinants of anxiety and depression among adults in Ghana: a systematic review and meta-analysis protocol.

INTRODUCTION: Anxiety and depression pose a significant global health challenge, especially affecting adults in low-income and middle-income countries. In many low-income and middle-income countries, including those in sub-Saharan Africa, social determinants such as access to affordable health services, conflict, food insecurity, and poverty may be associated with the prevalence of anxiety and depression, further contributing to health disparities. To mitigate the burden of anxiety and depression in sub-Saharan Africa, it is essential to develop country-level tailored mental health policies and strategies. For example, Ghana is working towards improving mental health via its 12 year Mental Health policy launched in 2021. However, the prevalence of anxiety and depression among adults in Ghana, along with associated social determinants remains largely unknown, posing challenges for mental health planning, resource allocation and developing targeted interventions. This systematic review seeks to (1) examine the prevalence of anxiety and depression among adults in Ghana and (2) explore social determinants potentially associated with anxiety and depression. METHODS AND ANALYSIS: Electronic databases (eg, African Index Medicus, CINAHL, EMBASE, MEDLINE, and PsycINFO) will be searched with all screening steps conducted by two independent reviewers. Secondary search strategies, including grey literature searches, will be used. Studies reporting on the prevalence of anxiety, depression and/or a combined symptom measure (ie, psychological distress) among adults in Ghana, using validated instruments will be included. If data allows, random-effects-meta-analyses will be performed to estimate pooled prevalence rates of anxiety and depression. Potential clinical and methodological moderators will be examined using subgroup analyses and meta-regression. A narrative synthesis will explore social determinants potentially associated with anxiety and depression among adults in Ghana. ETHICS AND DISSEMINATION: Ethical approval is not required as no primary data will be collected. Results will be disseminated via a peer-reviewed publication and presentations at academic conferences. Plain language summaries will be provided to relevant non-governmental organisations working in Ghana. PROSPERO REGISTRATION NUMBER: CRD42023463078.

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.

Background: Childhood cancer treatment completion can be a period of vulnerability for parents and is associated with mental health difficulties such as depression and anxiety. We developed an internet-administered, guided, low-intensity cognitive behavioural therapy-based self-help intervention (EJDeR) for parents delivered on the U-CARE-portal (Portal). The acceptability and feasibility of EJDeR and study procedures were examined using a single-arm feasibility trial (ENGAGE). Results indicated that EJDeR and ENGAGE study procedures are acceptable and feasible, however, a need for clinical and technical modifications to EJDeR and refinements to ENGAGE study procedures was identified. Objectives: This study aimed to explore the acceptability and feasibility of EJDeR and ENGAGE study procedures from the perspective of e-therapists to inform clinical and technical modifications to EJDeR and refinements to study procedures prior to progression to a superiority randomised controlled trial. Methods: We conducted semi-structured interviews with 10 e-therapists. Data were analysed using manifest content analysis. Results: We identified three categories relating to the acceptability and feasibility of EJDeR: (a) Support to e-therapists (subcategories: Clinical supervision and Technical difficulties); (b) Guidance to parents (subcategories: Support protocols and Synchronous communication); and (c) Content (subcategories: Relevancy of the intervention and Pacing of the intervention). We identified four categories relating to the acceptability and feasibility of study procedures: (a) Recruitment and training of e-therapists (subcategories: Definition of the role and Training program); (b) Retention of parents (subcategories: Parent suitability and screening and Frequency of weekly Portal assessments); (c) Retention of e-therapists (subcategories: Administrative requirements and Communication with the research team); and (d) The Portal. Conclusions: EJDeR and study procedures were considered acceptable and feasible, however, clinical and technical modifications and refinements to study procedures were suggested to enhance acceptability and feasibility. Results may also inform implementation considerations for both EJDeR and other similar digital psychological interventions. Trial registration number: ISRCTN 57233429.

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.

BACKGROUND: Public contribution in research can lead to the design and conduct of more feasible and relevant research. However, our understanding of the acceptability and feasibility of public contribution and the evidence base regarding its impact in low- and middle-income countries (LMICs) is limited. METHODS: In this study protocol, we describe a mixed-method examination of public contribution activities in the GuardiansCan project. The GuardiansCan project aims to respond to Tanzanian guardians' poor adherence to children's follow-up care after treatment for acute lymphoblastic leukemia (ALL) with the help of Mobile Health technology. We aim to: (1) involve guardians of children treated for ALL as Guardians Advisory Board (GAB) members in the managing and undertaking, analysis and interpretation, and dissemination phases of the GuardiansCan project; and (2) examine the acceptability, feasibility, and perceived impact of GAB members' contribution to the GuardiansCan project from the perspective of the GAB members and public contribution coordinators. We will recruit six to eight guardians of children treated for ALL to the GAB. We will hold workshops where GAB members contribute to all project phases. Using impact logs, we will record GAB workshop activities and the perceived impact of these activities. We will interview GAB members and public contribution coordinators 6 months after establishing the GAB, and at the end of each study within the project, to examine the acceptability, feasibility, and perceived impact of public contribution activities. DISCUSSION: We expect GAB contribution to increase project quality and relevance, and inform how to best embed public contribution in research in LMICs.