Improving Care for Cancer-Related and Other Forms of Lymphoedema in Low- and Middle-Income Countries: A Qualitative Study

Background: Lymphoedema is a common, distressing and debilitating condition that can be related to cancer and its treatment or other conditions. Little is known about current practices in the diagnosis, assessment and management of lymphoedema in low- and middle-income countries (LMIC). Aim: To describe current practices in diagnosing, assessing and managing cancer-related and other forms of lymphoedema in LMIC, and related barriers and facilitators.Methods: An exploratory-descriptive qualitative study. Participants were lymphoedema experts or health care professionals identified via published lymphoedema papers and professional organizations respectively. Sampling was purposive to ensure a diversity of perspectives and experience. Data collection was via semi-structured telephone/video interviews, and questions canvassed participants’ experiences and perceptions of lymphoedema care in LMIC. Interviews were audio-recorded and transcribed verbatim. Analysis proceeded via inductive coding before mapping codes to the World Health Organization’s (WHO) Innovative Care for Chronic Conditions Framework. Results:Nineteen participants were interviewed, most of whom were physiotherapists (n = 11). Ten participants worked permanently in a LMIC, while the remainder were based in a high-income country (HIC) and had been involved in initiatives to improve lymphoedema care across multiple LMIC. Participants indicated that management of cancer versus non-cancer related lymphoedema was similar, but that pathways to care were more straight-forward for those receiving cancer care, leading to earlier diagnosis. Key facilitators to optimizing lymphoedema care in LMIC included: 1) joining forces to overcome lymphoedema-related stigma; 2) building workforce capabilities; and 3) partnering with patients and families to support self-management. Ideas for building workforce included developing health professional knowledge, supporting a commitment to multidisciplinary team care, and adapting HIC guidelines for lymphoedema care to LMIC. Partnering with patients and families to support self-management involved following the person-centred approach, establishing clear communication, promoting adherence to management, adapting management to available resources, and involving patient family and friends in lymphoedema care.Conclusion: Raising community and health professional awareness regarding lymphoedema and its management is a key first step to improving care outcomes. Resources for clinicians and patients/families developed for lymphoedema care in HIC need to be adapted for low resource settings.

Towards Zero Suicide for older adults: implications of healthcare service use for implementation

Objective: Implementing the Towards Zero Suicide (TZS) approach to suicide prevention in older adults requires evidence-based adaptation. This paper aims to highlight important differences and opportunities in healthcare service use by older adults relevant to implementation. Conclusion: The TZS approach may prevent suicide in older adults, but only if implementation aligns with systemic differences in healthcare utilisation by older people. Of greatest importance in older adults are (1) most mental healthcare is delivered outside of specialist mental health services; (2) physical conditions and disability are major modifiable contributors to suicide that must be addressed within TZS; and (3) older people have very low use of Medicare-funded psychological services. Primary healthcare providers, who may be seeing older people at risk of suicide, are often neither equipped to provide expert assessment and care planning for often complex needs, nor may see this as their role. However, they are essential in providing pathways to care, which may prevent suicide. Leaders must recognise TZS for older people will usually involve multiple transitions. This requires engagement of key services with clear roles, targeted training, rapid access to specialist older persons mental health support and development of a new TZS element: the navigator.

Pathways to mental health care in Nepal: a 14-center nationwide study

Background Pathways to care studies are feasible and tested means of finding the actual routes taken by patients before reaching proper care. In view of the predominance of nonprofessional service providers and the lack of previous large studies on pathways in Nepal, this multicenter study is needed. The aim of the study was to trace the various pathways and carers involved in mental health care; assess clinical variables such as the duration of untreated illness, clinical presentation and treatment; and compare geographically and culturally diverse landscapes. Methods This was a cross-sectional, convenience sampling study performed at 14 centers where new cases were being taken. The World Health Organization Study of the Pathways-to-Care Schedule was applied. The Nepali version of the encounter form was used. The data were collected between 17 September and 16 October 2020 and were analyzed using the Statistical Package for the Social Sciences (SPSS). Additionally, perspectives from local investigators were collected and discussed. Results Most of the first carers were native/religious faith healers (28.2%), followed by psychiatrists (26%). The median duration for the first psychiatric consultation was 3 weeks. The duration of untreated illness was 30.72 ± 80.34 (median: 4) weeks, and the time taken for this journey was 94.99 ± 274.58 (median: 30) min. The longest delay from the onset of illness to psychiatric care was for epilepsy {90.0 ± 199.0 (median: 25.5)} weeks, followed by neurotic illness {22.89 ± 73.45 (median: 2)} and psychotic illness {10.54 ± 18.28 (median: 2)} weeks. Overall, most patients with severe mental illnesses (SMIs) had their first contact with faithhealers (49%), then met with medical doctors (13%) or psychiatrists (28%). Marked differences in clinical presentation surfaced when hilly centers were compared with the Terai belt. Conclusions Faith healers, general practitioners and hospital doctors are major carers, and the means of educating them for proper referral can be considered. The investigators see several hindrances and opportunities in the studied pathways. The employment of more mental health professionals and better mental health advocacy, public awareness programs and school education are suggested strategies to improve proper mental health care.

Systematic review of pathways to care in the U.S. for Black individuals with early psychosis

The pathway to receiving specialty care for first episode psychosis (FEP) among Black youth in the US has received little attention despite documented challenges that negatively impact engagement in care and clinical outcomes. We conducted a systematic review of US-based research, reporting findings related to the pathway experiences of Black individuals with FEP and their family members. A systematic search of PubMed, PsycInfo, and Embase/Medline was performed with no date restrictions up to April 2021. Included studies had samples with at least 75% Black individuals and/or their family members or explicitly examined racial differences. Of the 80 abstracts screened, 28 peer-reviewed articles met the inclusion criteria. Studies were categorized into three categories: premordid and prodromal phase, help-seeking experiences, and the duration of untreated psychosis (DUP). Compounding factors such as trauma, substance use, and structural barriers that occur during the premorbid and prodromal contribute to delays in treatment initiation and highlight the limited use of services for traumatic childhood experiences (e.g., sexual abuse). Studies focused on help-seeking experiences demonstrated the limited use of mental health services and the potentially traumatic entry to services (e.g., law enforcement), which is associated with a longer DUP. Although the majority of studies focused on help-seeking experiences and predictors of DUP, findings suggests that for Black populations, there is a link between trauma and substance use in the pathway to care that impacts the severity of symptoms, initiation of treatment, and DUP. The present review also identifies the need for more representative studies of Black individuals with FEP.

A qualitative study of perspectives on access to tuberculosis health services in Xigaze, China

Background Tuberculosis (TB) is a major global health threat and the leading infectious disease cause of death worldwide. Access to and retention in TB care remains a challenge for patients, particularly those living in rural and remote settings. This qualitative study explored barriers and facilitators to accessing and maintaining contact with TB care services in communities in Xigaze (Shigatse) prefecture, Xizang Autonomous Region (Tibet Autonomous Region), China from the perspective of persons impacted by TB. Methods We conduced in-depth interviews with 23 participants impacted by TB in four rural districts in Xigaze prefecture, Xizang Autonomous Region, China between April 2019 and November 2020. Interviews were conducted in Tibetan and Mandarin, transcribed in Mandarin and translated into English. Transcripts were checked against recordings by native Tibetan and Mandarin speakers. QSR NVivo12 software was used for framework analysis guided by an access to care conceptual framework by Levesque et al. Results Overall patients reported low awareness of and an indifferent attitude towards TB, although all reported understanding the need to adhere to treatment. Participants reported complex pathways to care, often requiring visits to multiple healthcare facilities. Some participants reported visiting traditional Tibetan medicine (TTM) providers. Participants reported various barriers to accessing care including challenges physically reaching care, out-of-pocket payments for tests, diagnostics and transport. Barriers to maintaining care included medication side effects and worry about treatment effectiveness. Enablers to accessing care identified included knowledge or past experience with TB, integrated models of TTM and western care, supportive village doctors who conducted home visits, free TB treatment and other subsidies, as well as having family support with care and social support as barriers and facilitators to maintaining treatment. Conclusions We identified barriers and facilitators to accessing services in rural communities in Xigaze from the perspective of persons impacted by TB. Challenges include complex pathways to care, travel distances, wait times and low awareness. Tuberculosis care in the region could be strengthened by ongoing culturally tailored educational campaigns to increase awareness, partnerships with TTM providers, providing comprehensive treatment subsidies and strengthening the role of family members in comprehensive TB care. Graphic abstract

Qualitative findings of a randomized control trial of OnTrack the Game for young people with psychosis (Preprint)

BACKGROUND Several studies have shown the benefits of coordinated specialty care (CSC) for individuals with first episode psychosis (FEP), yet pathways to care are marred by lack of knowledge, stigma, and difficulties with treatment engagement. Serious games or video interventions may provide a way to address these factors. OBJECTIVE This study focuses on qualitative results of a randomized control trial (RCT) comparing OnTrack>An Online Role-Playing Game (OTG) to recovery videos (RV) on engagement, stigma, empowerment, hope, recovery, and understanding of psychosis in clients receiving CSC. Clinicians were also interviewed regarding their perceptions of the interventions and suggestions for improvement. METHODS 16 clients ages 16-30 with FEP attending a CSC program in New York State and 9 clinicians participated in the qualitative interviews. Interviews were analyzed using the rapid identification of themes from audio recordings (RITA) method. RESULTS For clients, themes included relatability of game content, an increased sense of hope and the possibility of recovery, decreased self and public stigma, increased understanding of the importance of social support, and increased empowerment in the OTG group. Clinicians had a preference for RV and provided suggestions for dissemination and implementation. CONCLUSIONS Themes emerged which may help inform future research in this area particularly regarding dissemination and implementation of OTG/RV. CLINICALTRIAL ClinicalTrials.gov ID # NCT03390491

Intra-household Variation in Pathways to Care for Epilepsy and Mental Disorders in Eastern Uganda

Integrating mental, neurological, and substance use (MNS) health care into the public health system has become a global priority, with mental health, and well-being now being part of the Sustainable Development Goals. In the aim to provide good quality care for MNS disorders, understanding patients' pathways to care is key. This qualitative study explores the pathways to care of patients attending an outpatient mental health clinic of a district hospital in eastern rural Uganda, from the perspectives of their caregivers. Twenty seven in-depth interviews were conducted with caregivers of MNS patients visiting the clinic, with a focus on four case-presentations. Data analysis consisted of thematic and emergent content analyses using NVivo 11. Results across all interviews highlight that chosen help-seeking itineraries were largely pluralistic, combining and alternating between traditional healing practices, and biomedical care, regardless of the specific MNS disorder. Intra-household differences in care seeking pathways—e.g., where one patient received traditional help or no care at all, while the other received biomedical care—depended on caregivers' perceived contextual illness narrative for each patient, in combination with a variety of other factors. If interpreted as a form of bewitchment, traditional medicine and healing was often the first form of care sought, while the mental health clinic was seen as a recourse to “free” care. Patients, especially younger children, who showed visible improvements once stabilized on psychotropic medication was a source of motivation for caregivers to continue with biomedical care at the mental health clinic. However, stock-outs of the free psychotropic medication at the clinic led to dissatisfaction with services due to out-of-pocket expenses and precipitated returning to alternative therapy choices. This article showcases the importance of understanding the complex and varied combinations of individual, cultural, socioeconomic and structural factors that may affect caregivers' choices of pathways to care for patients with MNS disorders in eastern rural Uganda. These cumulative complex processes and context-specific help-seeking behaviors, which ultimately impact patient treatment and MNS health outcomes, need to be first acknowledged, understood and taken into account if we are to promote more inclusive, effective and integrated public mental health systems globally.

Where will it end? Pathways to care and catastrophic costs following negative TB evaluation in Uganda

Introduction Catastrophic costs incurred by tuberculosis (TB) patients have received considerable attention, however little is known about costs and pathways to care after a negative TB evaluation. Materials and methods We conducted a cross-sectional study of 70 patients with a negative TB evaluation at four community health centres in rural and peri-urban Uganda. Patients were traced 9 months post-evaluation using contact information from TB registers. We collected information on healthcare visits and implemented locally-validated costing questionnaires to assess the financial impact of their symptoms post-evaluation. Results Of 70 participants, 57 (81%) were traced and 53 completed the survey. 31/53 (58%) surveyed participants returned to healthcare facilities post-evaluation, making a median of 2 visits each (interquartile range [IQR] 1–3). 11.3% (95%CI 4.3–23.0%) of surveyed patients and 16.1% (95%CI 5.5–33.7%) of those returning to healthcare facilities incurred catastrophic costs (i.e., spent >20% annual household income). Indirect costs related to lost work represented 80% (IQR 32–100%) of total participant costs. Conclusions Patients with TB symptoms who experience financial catastrophe after negative TB evaluation may represent a larger absolute number of patients than those suffering from costs due to TB. They may not be captured by existing definitions of non-TB catastrophic health expenditure.