The expression of depression among Javanese patients with major depressive disorder: A concept mapping study

Brintnell, E. Sharon; Sommer, Ryan; Kuncoro, Bambang; Setiawan, G. Pandu; Bailey, Patricia Hill

doi:10.1177/1363461513501709

Cited by 9 publications

(11 citation statements)

References 27 publications

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“…Furthermore, a specialist strongly suggested not using the word ‘depression’ to avoid stigma, with the term ‘mood changes’ being preferable instead. This suggestion is in line with previous findings in which the experience of depression was expressed in many forms and terms by Javanese [ 50 ]. This means that an understanding of the personal and cultural terms should also be considered in choosing or adapting an identification tool.…”

Section: Discussionsupporting

confidence: 93%

The feasibility of a role for community health workers in integrated mental health care for perinatal depression: a qualitative study from Surabaya, Indonesia

Minas¹,

Jorm²,

Kakuma³

2018

Int J Ment Health Syst

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BackgroundIndonesian maternal health policies state that community health workers (CHWs) are responsible for detection and referral of pregnant women and postpartum mothers who might suffer from mental health problems (task-sharing). The documents have been published for a while, however reports on the implementation are hardly found which possibly resulted from feasibility issue within the health system.AimsTo examine the feasibility of task-sharing in integrated mental health care to identify perinatal depression in Surabaya, Indonesia.MethodsSemi-structured interviews were conducted with 62 participants representing four stakeholder groups in primary health care: program managers from the health office and the community, health workers and CHWs, mental health specialists, and service users. Questions on the feasibility were supported by vignettes about perinatal depression. WHO’s health systems framework was applied to analyse the data using framework analysis.ResultsFindings indicated the policy initiative is feasible to the district health system. A strong basis within the health system for task-sharing in maternal mental health rests on health leadership and governance that open an opportunity for training and supervision, financing, and intersectoral collaboration. The infrastructure and resources in the city provide potential for a continuity of care. Nevertheless, feasibility is challenged by gaps between policy and practices, inadequate support system in technologies and information system, assigning the workforce and strategies to be applied, and the lack of practical guidelines to guide the implementation.ConclusionThe health system and resources in Surabaya provide opportunities for task-sharing to detect and refer cases of perinatal depression in an integrated mental health care system. Participation of informal workforce might facilitate in closing the gap in the provision of information on perinatal mental health.

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Section: Discussionsupporting

confidence: 93%

The feasibility of a role for community health workers in integrated mental health care for perinatal depression: a qualitative study from Surabaya, Indonesia

Minas¹,

Jorm²,

Kakuma³

2018

Int J Ment Health Syst

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“…Morevoer, a major criticism of using secondary social media data in this type of research is related to the uncertainty of the characteristics of the online respondents, in particular the lack of clinical confirmation of diagnosis [ 18 ]. Another study has demonstrated comparability in the findings derived from online blogs and face-to-face interviews, however [ 20 ]. It would be important to replicate this study using subjects with a clinically confirmed diagnosis and compare their insights with those collected from social media sources to enable conclusions to be drawn around the “representativeness” and “validity” of secondary online data versus primary, prospective data.…”

Section: Discussionmentioning

confidence: 99%

A comparison of three methods to generate a conceptual understanding of a disease based on the patients’ perspective

Humphrey

Willgoss²,

Trigg

et al. 2017

J Patient Rep Outcomes

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BackgroundThe Food and Drug Administration patient-reported outcome (PRO) guidance provides standards for PRO development, but these standards bring scientific and logistical challenges which can result in a lengthy and expensive instrument development process. Thus, more pragmatic methods are needed alongside traditional approaches.MethodsPartnering with the National Ankylosing Spondylitis (AS) Society, we compared three methods for eliciting patient experiences: 1) concept elicitation (CE) interviews with 12 individuals with AS, 2) “group concept mapping” (GCM) with 16 individuals with AS, 3) a social media review (SMR) of AS online chatrooms. Three conceptual models were developed and compared to explore data breadth/depth, as well as the practicalities and patient-centeredness.ResultsOverlap in concepts was observed between conceptual models; 35% of symptoms were identified by all methods. The SMR approach identified the most concepts (n = 23), followed by CE interviews (n = 18), and GCM (n = 15). Eight symptoms were uniquely identified using GCM and SMR. Eliciting in-depth data was challenging for SMR as detail was not always provided. Insight into the relationships between symptoms was obtained as a “concept map” in GCM, via effective probing within interviews, and through the subject’s descriptions in SMR. Practical investment varied; CE interviews were the most resource intensive, whereas SMR was the least. Individuals in GCM and CE interviews reported high engagement.ConclusionsPrimary CE interviews achieved the greatest depth in conceptual understanding of patient experience; however, novel methods (GCM, SMR) provide complementary approaches for identifying measurement concepts. Each method has strengths and weaknesses and should be selected based on specific research objectives.Electronic supplementary materialThe online version of this article (10.1186/s41687-017-0013-6) contains supplementary material, which is available to authorized users.

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“…Our observations and survey findings about challenges with the sorting phase of GCM is reflected in other GCM studies [8, 11]. One study using GCM to understand barriers to cancer screening in formerly homeless women with serious mental illness excluded 11 of 27 sorts (41%) in their analysis due to sorting statements based on importance, using a “miscellaneous” pile, or only sorting into two piles [8].…”

Section: Discussionmentioning

confidence: 61%

Patient experience and challenges in group concept mapping for clinical research

Mills

LaNoue

Gentsch

et al. 2019

J Patient Rep Outcomes

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Background and objective Group concept mapping (GCM) is a research method that engages stakeholders in generating, structuring and representing ideas around a specific topic or question. GCM has been used with patients to answer questions related to health and disease but little is known about the patient experience as a participant in the process. This paper explores the patient experience participating in GCM as assessed with direct observation and surveys of participants. Methods This is a secondary analysis performed within a larger study in which 3 GCM iterations were performed to engage patients in identifying patient-important outcomes for diabetes care. Researchers tracked the frequency and type of assistance required by each participant to complete the sorting and rating steps of GCM. In addition, a 17-question patient experience survey was administered over the telephone to the participants after they had completed the GCM process. Survey questions asked about the personal impact of participating in GCM and the ease of various steps of the GCM process. Results Researchers helped patients 92 times during the 3 GCM iterations, most commonly to address software and computer literacy issues, but also with the sorting phase itself. Of the 52 GCM participants, 40 completed the post-GCM survey. Respondents averaged 56 years of age, were 50% female and had an average hemoglobin A1c of 9.1%. Ninety-two percent ( n = 37) of respondents felt that they had contributed something important to this research project and 90% ( n = 36) agreed or strongly agreed that their efforts would help others with diabetes. Respondents reported that the brainstorming session was less difficult when compared with sorting and rating of statements. Discussion Our results suggest that patients find value in participating in GCM. Patients reported less comfort with the sorting step of GCM when compared with brainstorming, an observation that correlates with our observations from the GCM sessions. Researchers should consider using paper sorting methods and objective measures of sorting quality when using GCM in patient-engaged research to improve the patient experience and concept map quality.

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The expression of depression among Javanese patients with major depressive disorder: A concept mapping study

Cited by 9 publications

References 27 publications

The feasibility of a role for community health workers in integrated mental health care for perinatal depression: a qualitative study from Surabaya, Indonesia

The feasibility of a role for community health workers in integrated mental health care for perinatal depression: a qualitative study from Surabaya, Indonesia

A comparison of three methods to generate a conceptual understanding of a disease based on the patients’ perspective

Patient experience and challenges in group concept mapping for clinical research

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