Active involvement of the end-user when developing web-based mental health interventions.

BACKGROUND: Although many web-based mental health interventions are being released, the actual uptake by end users is limited. The marginal level of engagement of end users when developing these interventions is recognized as an important cause for uptake problems. In this paper, we offer our perceptive on how to improve user engagement. By doing so, we aim to stimulate a discourse on user involvement within the field of online mental health interventions. METHODS: We shortly describe three different methods (the expert-driven method, intervention mapping, and scrum) that were currently used to develop web-based health interventions. We will focus to what extent the end user was involved in the developmental phase, and what the additional challenges were. In the final paragraph, lessons learned are summarized, and recommendations provided. RESULTS: Every method seems to have its trade-off: if end users are highly involved, availability of end users and means become problematic. If end users are less actively involved, the product may be less appropriate for the end user. Other challenges to consider are the funding of the more active role of technological companies, and the time it takes to process the results of shorter development cycles. CONCLUSION: Thinking about user-centered design and carefully planning, the involvement of end users should become standard in the field of web-based (mental) health. When deciding on the level of user involvement, one should balance the need for input from users with the availability of resources such as time and funding

LEFT BEHIND: MONITORING THE SOCIAL INCLUSION OF YOUNG AUSTRALIANS WITH SELF- REPORTED LONG TERM HEALTH CONDITIONS, IMPAIRMENTS OR DISABILITIES 2001 - 2009

Adolescents and young adults with disabilities are at heightened risk of social exclusion. Exclusion leads to poor outcomes in adulthood which in turn affects individuals’ health and wellbeing and that of their families and society through loss of productive engagement in their communities. Australia’s Social Inclusion Indicators Framework provides indices in domains of participation, resources and multiple and entrenched disadvantage to monitor and report on social inclusion. The Household Income and Labour Dynamics in Australia survey provides data over time on households in Australia. Using these tools we report here on the extent of social inclusion/exclusion of young disabled Australians over the past decade. Relative to their non-disabled peers, young disabled Australians are significantly less likely to do well on participation indicators.Centre for Disability Research and Polic

Development of a standard set of outcome measures for non-specific low back pain in Dutch primary care physiotherapy practices: a Delphi study

Item does not contain fulltextPURPOSE: To develop a clinical standard set of outcome measures that are accepted for relevance and feasibility by stakeholders and useful for (a) interaction between patient and the professional, e.g. shared decision-making in goal-setting, monitoring and feedback based on outcomes, (b) internal quality improvement, and (c) external transparency in patients with non-specific low back pain (NSLBP) in primary care physical therapy. METHODS: We used a consensus-driven modified RAND-UCLA Delphi method in seven steps with panellists (patients, representatives of patient and physiotherapy associations, researchers, policy makers, health insurers): (1) literature search, (2) first online survey, (3) patient interviews, (4) an experts meeting, (5) a consensus meeting, (6) second online survey, and (7) final approval of an advisory board. Steps 1-4 resulted in potential outcome measures. In the consensus meeting after discussion panellists voted for inclusion per measure. In the second online survey the final standard set was rated on relevance and feasibility on a 9-point Likert scale; when the median score was >/= 7, the standard set was accepted and finally approved. RESULTS: Thirteen draft outcome measures were rated and discussed, and finally, six outcome measures were accepted. The standard set includes the Quebec Back Pain Disability Scale, Oswestry Disability Index, Patient-Specific Functional Scale, Numeric Pain Rating Scale, Global Perceived Effect (GPE-DV), and the STarT Back Screening Tool (SBT). CONCLUSION: This study presents a standard set of outcome measures for patients with NSLBP in primary care physiotherapy accepted for relevance and feasibility by stakeholders. The standard set is currently used in daily practice and tested on validity and reliability in a pilot study. These slides can be retrieved under Electronic Supplementary Material

Furthering patient adherence: A position paper of the international expert forum on patient adherence based on an internet forum discussion

<p>Abstract</p> <p>Background</p> <p>As the problem of patient non-adherence persists and a solution appears hard to be found, it continues to be important to look for new ways to further the issue. We recently conducted a meta-review of adherence intervention studies which yielded a preliminary agenda for future research, practice and theory development in patient adherence. The objective of the present project was to find out to what extent adherence experts consider this agenda relevant and feasible.</p> <p>Methods</p> <p>The thirty-five corresponding authors of the review studies included in the meta-review were invited to join the International Expert Forum on Patient Adherence and to participate in a four-week web-based focus group discussion. The discussion was triggered by the points on the preliminary agenda presented as propositions to which forum members could react. Two researchers analysed the transcripts and selected relevant phrases.</p> <p>Results</p> <p>Twenty adherence experts participated. Various ideas and viewpoints were raised. After the closure of the web-site, the expert forum was asked to authorize the synthesis of the discussion, to list the propositions in order of priority and to answer a few questions on the use of the web-based focus group as a tool to obtain expert opinions. Their ranking showed that the development of simple interventions is the most promising step to take in fostering patient adherence, preferably within a multidisciplinary setting of medical, pharmaceutical, social and technical science and, not in the least, by incorporating patients' perspectives.</p> <p>Conclusion</p> <p>For enhancing adherence, the development of simple interventions originating from a multidisciplinary perspective including patients' input, appears most promising. Disclosing patients' perspectives requires open communication about patients' expectations, needs and experiences in taking medication and about what might help them to become and remain adherent.</p

Doing referring in Murriny Patha conversation

Successful communication hinges on keeping track of who and what we are talking about. For this reason, person reference sits at the heart of the social sciences. Referring to persons is an interactional process where information is transferred from current speakers to the recipients of their talk. This dissertation concerns itself with the work that is achieved through this transfer of information. The interactional approach adopted is one that combines the “micro” of conversation analysis with the “macro” of genealogically grounded anthropological linguistics. Murriny Patha, a non-Pama-Nyungan language spoken in the north of Australia, is a highly complex polysynthetic language with kinship categories that are grammaticalized as verbal inflections. For referring to persons, as well as names, nicknames, kinterms, minimal descriptions and free pronouns, Murriny Patha speakers make extensive use of pronominal reference markers embedded within polysynthetic verbs. Murriny Patha does not have a formal “mother-in-law” register. There are however numerous taboos on naming kin in avoidance relationships, and on naming and their namesakes. Similarly, there are also taboos on naming the deceased and on naming their namesakes. As a result, for every speaker there is a multitude of people whose names should be avoided. At any one time, speakers of the language have a range of referential options. Speakers’ decisions about which category of reference forms to choose (names, kinterms etc.) are governed by conversational preferences that shape “referential design”. Six preferences – a preference for associating the referent to the co-present conversationalists, a preference for avoiding personal names, a preference for using recognitionals, a preference for being succinct, and a pair of opposed preferences relating to referential specificity – guide speakers towards choosing a name on one occasion, a kinterm on the next occasion and verbal cross-reference on yet another occasion. Different classes of expressions better satisfy particular conversational preferences. There is a systematicity to the referential choices that speakers make. The interactional objectives of interlocutors are enacted through the regular placement of particular forms in particular sequential environments. These objectives are then revealed through the turn-by-turn unfolding of conversational interaction