| 1. |
- Akram, AJ, et al.
(författare)
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Development of a condition-specific measure to assess quality of life in patients with hypodontia
- 2011
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Ingår i: Orthodontics & craniofacial research. - : John Wiley & Sons. - 1601-6335 .- 1601-6343. ; 14:3, s. 160-167
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To develop a measure to assess quality of life in patients with hypodontia.Setting and sample population: Royal Devon and Exeter NHS Foundation Trust.Materials and methods: The study was divided into two parts. The first phase involved developing a patient-specific questionnaire using 22 patients with hypodontia in five focus groups. The transcripts from these groups were analysed thematically, and emerging themes used to direct the remaining focus groups. When no new themes were identified, it was assumed that data saturation was reached and no further focus groups were organised. In the second phase of the study, a health-related quality of life questionnaire was developed.Results: Analysis of transcripts revealed four themes: treatment, effect on daily activities, appearance and other peoples' reactions. These themes were incorporated into a questionnaire. The readability, ease of administration, face and content validity of the questionnaire were tested.Conclusions: A new measure for assessment of quality of life in patients with hypodontia is presented.
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| 2. |
- Ander, Malin, 1983-, et al.
(författare)
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A preliminary open trial of individualised cognitive behavioural therapy for young survivors of cancer during adolescence: initial findings and conceptualisation of distress
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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.
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| 3. |
- Ander, Malin, et al.
(författare)
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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
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 7:1
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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.
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| 4. |
- Awortwe, Victoria, et al.
(författare)
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Prevalence and social determinants of anxiety and depression among adults in Ghana : a systematic review and meta-analysis protocol
- 2024
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Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 14:4, s. e081927-e081927
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Forskningsöversikt (refereegranskat)abstract
- 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.
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| 5. |
- Blomberg, Oscar, et al.
(författare)
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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
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Ingår i: BMC Geriatrics. - : Springer. - 1471-2318. ; 24:113
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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.
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| 6. |
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| 7. |
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| 8. |
- Brantnell, Anders, 1983-, et al.
(författare)
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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
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Ingår i: JMIR Human Factors. - : JMIR Publications. - 2292-9495. ; 10
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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.
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| 9. |
- Brantnell, Anders, 1983-, et al.
(författare)
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Views of Implementers and Nonimplementers of Internet-Administered Cognitive Behavioral Therapy for Depression and Anxiety : Survey of Primary Care Decision Makers in Sweden
- 2020
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 22:8
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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.
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| 10. |
- Chiwanga, Faraja S., et al.
(författare)
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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
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Ingår i: JMIR Research Protocols. - : JMIR Publications. - 1929-0748. ; 12
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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.
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| 11. |
- Coumoundouros, Chelsea, et al.
(författare)
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Barriers and facilitators to implementing e-mental health interventions – a systematic review focusing in on interventions for informal cancer and dementia caregivers
- 2021
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Konferensbidrag (refereegranskat)abstract
- ObjectivesThis systematic review aimed to identify barriers and facilitators to implementing e-mental health interventions for informal caregivers.Methods Electronic databases were searched for studies published since 2007 reporting on implementation of e-mental health interventions for caregivers of adults with chronic diseases. A thematic synthesis using the Consolidated Framework for Implementation Research (CFIR) was used to identify implementation barriers and facilitators.ResultsImplementation barriers and facilitators were reported for 15 unique interventions designed for cancer (n=8) or dementia (n=7) caregivers. Intervention and individual characteristics were the most commonly addressed CFIR domains. Facilitators related to intervention’s easy-to-use design and presentation of tailored materials. Barriers included a lack of intervention support and difficulty identifying with materials due to low diversity in caregiver demographics and dyad types presented. Perspectives from stakeholders other than caregivers were infrequently reported, however challenges finding resources and financing interventions posed a barrier to real-world implementation. Themes for cancer and dementia caregiver interventions were similar, however a specific dimension related to cancer caregiver interventions was the (un)desirability of dyadic interventions. Conclusion and clinical implicationsE-mental health interventions for caregivers tend to be well-designed, however many dimensions of implementing these interventions remain largely unexplored. Future intervention development and evaluations should include feedback from stakeholders such as clinicians and care organizations to create a more complete picture of important factors for real-world intervention implementation. Review findings are part of a programme of research aiming to develop an implementation ready e-mental health intervention for cancer caregivers which will also be briefly discussed.
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| 12. |
- Coumoundouros, Chelsea, et al.
(författare)
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Cognitive behavioural therapy self-help intervention preferences among informal caregivers of adults with chronic kidney disease : an online cross-sectional survey
- 2023
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Ingår i: BMC Nephrology. - : BioMed Central (BMC). - 1471-2369. ; 24:1
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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.
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| 13. |
- Coumoundouros, Chelsea
(författare)
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E-mental health interventions for informal caregivers : Development with a focus on implementation
- 2023
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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.
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| 14. |
- Coumoundouros, Chelsea, et al.
(författare)
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Implementation of e-mental health interventions for informal caregivers: a systematic review
- 2021
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Konferensbidrag (refereegranskat)abstract
- Background:Informal caregivers of people with chronic health conditions can experience anxiety, distress, depression, and other mental health difficulties as a result of their caregiving role. E-mental health interventions present a way to provide effective and accessible mental health support to informal caregivers, however implementation of e-mental health interventions can be challenging. A systematic review was conducted aiming to (1) examine implementation barriers and facilitators, and (2) identify implementation and intervention features associated with intervention effectiveness, to inform the design and implementation of e-mental health interventions for informal caregivers of adults with chronic diseases. Methods:Studies published since 2007 were searched for in six electronic databases, clinical trial registries and OpenGrey. Eligible studies reported on the implementation and/or effectiveness of e-mental health interventions for informal caregivers of adults with chronic diseases. Studies reporting on implementation were included in a thematic synthesis using the Consolidated Framework for Implementation Research (CFIR) to identify implementation barriers and facilitators. Randomized controlled trials reporting on intervention effectiveness were included in a qualitative comparative analysis to determine conditions related to implementation (e.g. interventionist training) and intervention characteristics (e.g. presence of support) sufficient for an intervention to be effective. Findings: A total of 34 studies have been included, representing 18 unique interventions for informal cancer (n=8), dementia (n=9) or stroke (n=1) caregivers. The majority of interventions were self-administered, and were either based on cognitive behavioral therapy or stress and coping frameworks. Aim 1: Implementation data were identified in 27 studies, representing 15 interventions. Intervention and individual (primarily informal caregiver) characteristics were the domains of the CFIR most commonly addressed. A barrier to implementation was lack of diversity among the informal care situations presented in interventions (e.g. not showing informal caregivers of different ages, ethnicities and care dyad types). Lack of support provided to informal caregivers was an additional barrier to implementation, however not all types of support are equally desirable (e.g. peer discussion forums). Implementation facilitators included intervention’s user-friendly designs and use of materials that informal caregivers could apply to their daily lives and routines. Perspectives from stakeholders at implementing organizations were not often explored, however, resource constraints (e.g. time) was one barrier to implementing e-mental health programs for informal caregivers.Aim 2: The qualitative comparative analysis included 8 randomized controlled trials and explored conditions such as the presence of peer support, professional support and the type of intervention theory. However, the analysis could not be conducted as the consistency level across the included studies was too low. Discussion: A variety of implementation barriers and facilitators were identified that can be used to inform future intervention development and implementation planning. Few studies were included in the qualitative comparative analysis, however there was low consistency in conditions sufficient for intervention effectiveness. Future research about e-mental health interventions for informal caregivers should seek out perspectives from a broader group of stakeholders, such as clinicians and care organizations, to gain further insight into implementation barriers and facilitators at different organizational levels.
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| 15. |
- Coumoundouros, Chelsea, et al.
(författare)
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Implementation of e-mental health interventions for informal caregivers – a systematic review of what we know and where to go next
- 2023
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Konferensbidrag (refereegranskat)abstract
- Introduction: E-mental health interventions have the potential to provide accessible mental health support to informal caregivers who commonly experience mental health problems. However, e-mental health interventions for informal caregivers are frequently not implemented. Methods: A mixed-methods systematic review was undertaken to explore what factors impact the implementation of e-mental health interventions for informal caregivers. Within the review, a thematic synthesis utilizing primarily deductive coding based on the Consolidated Framework for Implementation Research was used to identify implementation barriers and facilitators.Results: The thematic synthesis included 44 reports resulting in identification of 152 barriers and facilitators. Barriers and facilitators were commonly related to the intervention and individual characteristic domains of the framework, including barriers such as lack of diversity in informal care scenarios included in the intervention and lack of support, and facilitators such as user-friendly design and providing benefits to informal caregivers (e.g. improved wellbeing). Barriers and facilitators related to the outer and inner setting, and the implementation process were less commonly explored but included lack of resources as a barrier, and alignment between the intervention and organizational goals as a facilitator. Conclusions: Implementation barriers and facilitators identified in this review can be used to inform future intervention development and implementation strategy development and planning. Future research should focus on exploring the perspectives of professionals who may be involved in implementation of e-mental health interventions for informal caregivers to improve our understanding of factors that influence e-mental health implementation within implementing organisations.
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| 16. |
- Coumoundouros, Chelsea, et al.
(författare)
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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
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 10:6
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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.
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| 17. |
- Coumoundouros, Chelsea, et al.
(författare)
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Implementation of e-mental health interventions for informal caregivers of adults with chronic diseases : a systematic review
- 2020
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Ingår i: Implementation Science. - : Springer Science and Business Media LLC. - 1748-5908. ; 15, s. P10-P10
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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.
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| 18. |
- Coumoundouros, Chelsea, et al.
(författare)
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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
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Ingår i: JMIR Mental Health. - : JMIR Publications Inc.. - 2368-7959. ; 9:11
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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
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| 19. |
- Coumoundouros, Chelsea, et al.
(författare)
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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
- 2023
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Ingår i: JMIR Human Factors. - : JMIR Publications. - 2292-9495. ; 10
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Tidskriftsartikel (refereegranskat)abstract
- Background: e–Mental health interventions can improve access to mental health support for caregivers of people living with chronic kidney disease (CKD). However, implementation challenges often prevent effective interventions from being put into practice. To develop an e–mental health intervention for caregivers of people living with CKD that is optimized for future implementation, it is important to engage professionals that may endorse or deliver the intervention (ie, potential implementers) during intervention development.Objective: This study aims to explore the perspectives of potential implementers working in kidney care, in mental health care, or at nonprofit organizations regarding the design and implementation of an e–mental health intervention for caregivers of people living with CKD.Methods: Potential implementers (N=18) were recruited via National Health Service Trusts, email, and social media advertisements to participate in semistructured video interviews. Interview questions were informed by the Consolidated Framework for Implementation Research (CFIR). Data were analyzed using a deductive analysis approach using the CFIR, with inductive coding applied to relevant data not captured by the framework.Results: A total of 29 generic categories, related to 17 CFIR constructs, were identified. The perceived fit between the intervention and implementation context (ie, existing service delivery models and work routines) and existing social networks among potential implementers were perceived as important factors in enhancing implementation potential. However, a need for capacity building among potential implementers to create systems to support the identification and referral of caregivers to an e–mental health intervention was identified. Equity concerns were raised regarding the intervention, highlighting the importance of incorporating an equity lens during intervention design to enhance accessibility and adoption.Conclusions: Potential implementers provided valuable insights into key design and implementation factors to help inform the development of an e–mental health intervention for caregivers of people living with CKD. Incorporating their feedback can help ensure the intervention is acceptable and inform the selection of future implementation strategies to enhance the implementation potential of the intervention. Potential implementers should continue to be engaged throughout intervention development.
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| 20. |
- Coumoundouros, Chelsea, et al.
(författare)
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Self-help intervention preferences among informal caregivers of adults with kidney conditions: an online cross-sectional survey
- 2022
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Konferensbidrag (refereegranskat)abstract
- Introduction: Informal caregivers provide important help and support to people with kidney conditions. However, informal caregivers often experience common mental health difficulties, such as depression and anxiety, while in the caregiving role. Informal caregiver’s mental health negatively impacts their own wellbeing, and can also impact the wellbeing of the person they care for. One potential solution to address informal caregivers’ need for psychological support is the development of cognitive behavioural therapy self-help (CBT-SH) interventions. CBT-SH interventions can increase access to psychological support as they are less reliant on extensive involvement of healthcare professionals, and can be delivered in a variety of formats. However, there is a lack of research exploring CBT-SH intervention preferences among informal caregivers of adults with kidney conditions. Following the development phrase of the Medical Research Council framework for developing and evaluating complex interventions, we aim to explore CBT-SH intervention preferences among informal caregivers of adults with kidney conditions to inform the development of an intervention that is acceptable to users and optimised for implementation into routine practice. Methods: Informal caregivers’ self-help intervention preferences were explored using an online cross-sectional survey. Adults living in the UK who were providing unpaid care to an adult with a kidney condition were eligible to participate. Participants were recruited via social media, websites, newsletters, and/or magazines of non-profit organisations for people with kidney conditions and/or informal caregivers. The survey contained questions related to (1) characteristics of the informal caregiver; (2) characteristics of the person with a kidney condition; (3) self-help intervention preferences (e.g. content, delivery format); and (4) informal caregiver’s mental health. Study materials were reviewed by two public contributors, informing the appearance of recruitment materials, and content of the participant information sheet and survey. Quantitative data analysis using descriptive statistics will be used to analyse survey responses. Results: Participants are currently being recruited, with data collection projected to end in May 2022. We aim to recruit approximately 150 participants, with 15 participants recruited as of mid-February 2022. Preliminary results describing participants’ sociodemographic background, caregiving situation (e.g. condition of the person they care for, relationship to the person they care for), and current mental health status will be presented. Intervention content and delivery (e.g. intervention format; where, when, and by whom the intervention is delivered) preferences identified as most important by informal caregivers will be reported. Findings will be used to guide development of a CBT-SH intervention for informal caregivers of people with kidney conditions and will inform upcoming qualitative research with informal caregivers and health and social care professionals to continue the intervention development process. Discussion: To our knowledge, this is the first study focused on the development of a CBT-SH intervention to support informal caregivers of people with kidney conditions. By incorporating informal caregiver’s intervention preferences during intervention development, we aim to ensure the intervention meets their needs and preferences, and will be acceptable when implemented into practice. Results reflect the first step towards the development of a CBT-SH intervention for informal caregivers of people with kidney conditions.
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| 21. |
- Coumoundouros, Chelsea, et al.
(författare)
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Sources of support and views of e-mental health among caregivers of adults with kidney conditions
- 2023
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Konferensbidrag (refereegranskat)abstract
- Background: Caregivers of adults with kidney conditions often experience mental health difficulties such as anxiety and depression. E-mental health interventions may help improve access to mental health support. To inform intervention development, this study aimed to explore caregivers’ experiences of receiving support and views of e-mental health interventions. Methods: Semi-structured interviews are being conducted with adults providing unpaid care to an adult with a kidney condition in the United Kingdom. Interviews explore topics such as experiences of receiving support, barriers and facilitators to accessing support, and views on the design and implementation of e-mental health interventions. Interviews are being analysed using reflexive thematic analysis.Expected results: Preliminary findings highlight that caregivers’ situations are complex, challenging, and unpredictable. Informal sources of support (i.e., family, friends and community/social media groups) provide valued support. Support from healthcare professionals is minimal and varied across kidney care units. Limited time and competing responsibilities are major barriers to accessing support, and the flexibility of e-mental health interventions can facilitate access. Incorporating practical tools and activities caregivers could apply to their daily lives are important design considerations. Current stage of work: Nine interviews have been conducted, transcribed, and are being analysed. Recruitment and analysis are ongoing. Discussion: By understanding caregivers’ caring contexts, we can enhance our knowledge of caregivers’ needs, and identify factors to consider during intervention development to design e-mental health interventions tailored to caregivers’ needs and inform future implementation planning. Careful consideration of caregivers’ needs may also increase the acceptability and relevancy of the intervention.
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| 22. |
- Coumoundouros, Chelsea, et al.
(författare)
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Stakeholder perspectives on implementation of e-mental health interventions for caregivers of adults with kidney conditions
- 2023
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Konferensbidrag (refereegranskat)abstract
- Background: E-mental health interventions for caregivers can be effective, but implementation challenges often prevent implementation into real-world practice. To understand these challenges, this study aimed to explore stakeholders’ views on the implementation and design of e-mental health interventions for caregivers of adults with kidney conditions to inform initial intervention development and future implementation planning.Methods: Semi-structured interviews with 18 professional stakeholders working with caregivers and/or people with kidney conditions in healthcare and community settings in the United Kingdom were conducted. Interviews explored topics including the implementation setting, barriers and facilitators to implementation, and intervention design. Interview transcripts were analysed using content analysis with deductive coding using the Consolidated Framework for Implementation Research, and inductive coding.Findings: Stakeholders acknowledged the importance of providing mental health support to caregivers, however, at a societal level (e.g. policy) caregivers tend to be undervalued and are a low priority. Stakeholders expressed equity and safeguarding concerns regarding e-mental health interventions, desiring an intervention accessible to people with different health and digital literacy levels at no cost. Building awareness and knowledge about the intervention among many professionals and having simple intervention referral pathways were important implementation facilitators. Discussion: Provision of mental health support for caregivers is endorsed by stakeholders, however involving stakeholders in implementation beyond promoting and referral of caregivers to the intervention would be challenging without additional resources. Intervention design and implementation factors identified by stakeholders must be considered during intervention development to design e-mental health interventions optimized for implementation into real-world practice.
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| 23. |
- Coumoundouros, Chelsea, et al.
(författare)
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"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
- 2024
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Ingår i: BMC Nephrology. - : BioMed Central (BMC). - 1471-2369. ; 25:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 24. |
- Farrand, Paul, et al.
(författare)
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Behavioural activation self-help to improve depression in people living with dementia: The PROMOTE treatment protocol.
- 2017
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Ingår i: New Zealand Journal of Psychology. ; 46:2, s. 51-62
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Tidskriftsartikel (refereegranskat)abstract
- There is an increasing number of people living with dementia and depression, with support for people to live well with dementia becoming a global healthcare priority and seminal to the New Zealand Framework for Dementia Care (Ministry of Health, 2013). This paper overviews the clinical protocol for the PROMOTE self-help programme to inform the delivery of a written low intensity intervention based on behavioural activation for the treatment of depression and low mood in people with dementia. The primary aim of the programme is to decrease symptoms of depression and improve quality of life in people living with dementia. Support to the person living with dementia in the use of the PROMOTE programme is provided by an informal caregiver, who themselves receive guidance over the telephone by an appropriately trained mental health professional. This model of support and guidance represents a novel feature of the intervention, and one that potentially helps to increase access within the community. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
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| 25. |
- Farrand, Paul, et al.
(författare)
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Behavioural activation written self-help to improve mood, wellbeing and quality of life in people with dementia supported by informal carers (PROMOTE) : a study protocol for a single-arm feasibility study.
- 2016
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Ingår i: Pilot and feasibility studies. - : Springer Science and Business Media LLC. - 2055-5784. ; 2
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Increases in life expectancy have resulted in a global rise in dementia prevalence. Dementia is associated with poor wellbeing, low quality of life and increased incidence of mental health difficulties such as low mood or depression. However, currently, there is limited access to evidence-based psychological interventions for people with dementia experiencing low mood and poor wellbeing. Behavioural activation-based self-help, supported by informal carers and guided by mental health professionals, may represent an effective and acceptable solution.METHODS/DESIGN: The present study is a phase II (feasibility) single-arm trial informed by the Medical Research Council complex interventions research methods framework. Up to 50 dementia participant/informal carer dyads will be recruited from a variety of settings including primary care, dementia-specific health settings and community outreach. People living with dementia will receive behavioural activation-based self-help and be supported by their informal carer who has received training in the skills required to support the self-help approach. In turn, during the use of the intervention, the informal carer will be guided by mental health professionals to help them work through the materials and problem solve any difficulties. Consistent with the objectives of feasibility studies, outcomes relating to recruitment from different settings, employment of different recruitment methods, attrition, data collection procedures, clinical delivery and acceptability of the intervention will be examined. Clinical outcomes for people with dementia (symptoms of depression and quality of life) and informal carers (symptoms of depression and anxiety, carer burden and quality of life) will be measured pre-treatment and at 3 months post-treatment allocation.DISCUSSION: This study will examine the feasibility and acceptability of a novel behavioural activation-based self-help intervention designed to promote wellbeing and improve low mood in people living with dementia, alongside methodological and procedural uncertainties associated with research-related procedures. As determined by pre-specified progression criteria, if research procedures and the new intervention demonstrate feasibility and acceptability, results will then be used to inform the design of a pilot randomised controlled trial (RCT) to specifically examine remaining methodological uncertainties associated with recruitment into a randomised controlled design.TRIAL REGISTRATION: Current Controlled Trials ISRCTN42017211.
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