Dataset Information

Service user and carer experiences of seeking help for a first episode of psychosis: a UK qualitative study.

ABSTRACT:

Background

Long duration of untreated psychosis (DUP) is associated with poor outcomes and low quality of life at first contact with mental health services. However, long DUP is common. In order to inform initiatives to reduce DUP, we investigated service users' and carers' experiences of the onset of psychosis and help-seeking in two multicultural, inner London boroughs and the roles of participants' social networks in their pathways to care.

Method

In-depth interviews were conducted with service users and carers from an early intervention service in North London, purposively sampled to achieve diversity in sociodemographic characteristics and DUP and to include service users in contact with community organisations during illness onset. Interviews covered respondents' understanding of and reaction to the onset of psychosis, their help-seeking attempts and the reactions of social networks and health services. Thematic analysis of interview transcripts was conducted.

Results

Multiple barriers to prompt treatment included not attributing problems to psychosis, worries about the stigma of mental illness and service contact, not knowing where to get help and unhelpful service responses. Help was often not sought until crisis point, despite considerable prior distress. The person experiencing symptoms was often the last to recognise them as mental illness. In an urban UK setting, where involved, workers in non-health community organisations were frequently willing to assist help-seeking but often lacked skills, time or knowledge to do so.

Conclusion

Even modest periods of untreated psychosis cause distress and disruption to individuals and their families. Early intervention services should prioritise early detection. Initiatives aimed at reducing DUP may succeed not by promoting swift service response alone, but also by targeting delays in initial help-seeking. Our study suggests that strategies for doing this may include addressing the stigma associated with psychosis and community education regarding symptoms and services, targeting not only young people developing illness but also a range of people in their networks, including staff in educational and community organisations. Initiatives to enhance the effective involvement of staff in community organisations working with young people in promoting help-seeking merit research.

SUBMITTER: Tanskanen S

PROVIDER: S-EPMC3193166 | biostudies-literature | 2011 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Service user and carer experiences of seeking help for a first episode of psychosis: a UK qualitative study.

Tanskanen Sanna S Morant Nicola N Hinton Mark M Lloyd-Evans Brynmor B Crosby Michelle M Killaspy Helen H Raine Rosalind R Pilling Stephen S Johnson Sonia S

BMC psychiatry 20110930

<h4>Background</h4>Long duration of untreated psychosis (DUP) is associated with poor outcomes and low quality of life at first contact with mental health services. However, long DUP is common. In order to inform initiatives to reduce DUP, we investigated service users' and carers' experiences of the onset of psychosis and help-seeking in two multicultural, inner London boroughs and the roles of participants' social networks in their pathways to care.<h4>Method</h4>In-depth interviews were condu ...[more]

PMID: 21961829

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Project description:BACKGROUND:Digital interventions offer an innovative way to make the experiences of people living with mental illness available to others. As part of the Self-Management And Recovery Technology (SMART) research program on the use of digital resources in mental health services, an interactive website was developed including videos of people with lived experience of mental illness discussing their recovery. These peer videos were designed to be watched on a tablet device with a mental health worker, or independently. OBJECTIVE:Our aim was to explore how service users experienced viewing the lived experience videos on this interactive website, as well as its influence on their recovery journey. METHODS:In total, 36 service users with experience of using the website participated in individual semistructured qualitative interviews. All participants had experience of psychosis. Data analysis occurred alongside data collection, following principles of constructivist grounded theory methodology. RESULTS:According to participants, engaging with lived experience videos was a pivotal experience of using the website. Participants engaged with peers through choosing and watching the videos and reflecting on their own experience in discussions that opened up with a mental health worker. Benefits of seeing others talking about their experience included "being inspired," "knowing I'm not alone," and "believing recovery is possible." Experiences of watching the videos were influenced by the participants' intrapersonal context, particularly their ways of coping with life and use of technology. The interpersonal context of watching the videos with a worker, who guided website use and facilitated reflection, enriched the experience. CONCLUSIONS:Engaging with lived experience videos was powerful for participants, contributing to their feeling connected and hopeful. Making websites with lived experience video content available to service users and mental health workers demonstrates strong potential to support service users' recovery.

Project description:BackgroundIntervening at an early stage of psychosis improves the chances of recovery from first-episode psychosis. However, people who are experiencing distress and early psychotic symptoms generally seem to delay seeking help. Therefore, multifaced information campaigns targeting help-seeking behavior of potential patients and their network are considered important tools within early detection and intervention strategies. In this study, we aimed to explore which discursive meaning content, including roles and actors, such information campaigns build on and construct. Our intention was not to provide objective answers, but to contribute to a discursive debate about potential conflicts in messages conveyed in such campaigns.MethodsA broad sample of information material utilized by TIPS Stavanger University Hospital (Norway) was examined. The material consisted of posters, booklets and brochures, newspaper ads, Facebook ads, and TIPS Info's website, representing various campaigns from 1996 to April 2018. A narrative discursive approach was applied at an epistemological level. At a practical level, a team-based thematic analysis was utilized to identify patterns across data.ResultsDiversity and several changes in strategy were recognized throughout the information material. Furthermore, three main themes and four subthemes were found to constitute the meaning content built in the information campaigns: knowledge is key; (almost) an illness among illnesses; and we all have a responsibility (comprising of the subthemes; to respond quickly; to step in; to provide an answer; and to tag along).ConclusionOur findings pointed to common dilemmas in mental health services: How to combine professional expert knowledge with collaborative practices that emphasize shared decision-making and active roles on behalf of patients? How to combine a focus on symptoms and illness and simultaneously express the importance of addressing patients' recourses? And how can we ask for societal responsibility in help-seeking when professionals are placed in expert positions which may not be optimal for dialogue with potential patients or their network? We discuss whether highlighting practices with more weight on resources and active roles for patients and their surroundings in information campaigns could promote earlier help-seeking.

Project description:OBJECTIVES:Vitiligo is a relatively common autoimmune condition causing loss of skin pigment. Around 1 in 100 people in the UK develop vitiligo. It can have a significant impact on quality of life for many of those affected. How people access information and help for vitiligo may influence how they manage such impact. We aimed to explore people's views and experiences of seeking health information and help for vitiligo. DESIGN:Qualitative analysis of free-text responses to four open-ended questions in an online survey. SETTING:Online survey conducted in the UK between February and March 2016. PARTICIPANTS:A survey link was emailed to 675 members of The Vitiligo Society, a UK-based charity providing information and support for people with vitiligo. One hundred and sixty-one members responded to the survey (24%). RESULTS:Many participants wrote extensive free text, often reporting frustration with help-seeking. They perceived general practitioners (GP) as their primary source of advice but felt that GPs had low awareness of available treatments. Where GPs appeared sympathetic or signposted towards further information this was appreciated, even where people felt their GP had not seemed knowledgeable. Many felt that vitiligo was dismissed by health professionals including GPs and dermatologists as 'cosmetic', which upset those who experienced substantial impact. Participants expressed concerns about the credibility of online information on vitiligo and the need for reliable, detailed information, as well as a desire for support with managing its psychosocial impact. CONCLUSIONS:Information and help-seeking needs of people with vitiligo currently appear to be poorly met, even among members of The Vitiligo Society, who are likely to have received more information than others. People with vitiligo would welcome greater health professional awareness of available vitiligo treatments. Acknowledging the psychosocial impacts of vitiligo and signposting towards credible information are also welcomed.

Project description:ObjectivesTo explore what factors shape a service user's decision to call an emergency ambulance for a 'primary care sensitive' condition (PCSC), including contextual factors. Additionally, to understand the function and purpose of ambulance care from the perspective of service users, and the role health professionals may play in influencing demand for ambulances in PCSCs.DesignAn ethnographic study set in one UK ambulance service. Patient cases were recruited upon receipt of ambulance treatment for a situation potentially manageable in primary care, as determined by a primary care clinician accompanying emergency medical services (EMS) crews. Methods used included: structured observations of treatment episodes; in-depth interviews with patients, relatives and carers and their GPs; purposeful conversations with ambulance clinicians; analysis of routine healthcare records; analysis of the original EMS 'emergency' telephone call recording.ResultsWe analysed 170 qualitative data items across 50 cases. Three cross-cutting concepts emerged as central to EMS use for a PCSC: (1) There exists a typology of nine 'triggers', which we categorise as either 'internal' or 'external', depending on how much control the caller feels they have of the situation; (2) Calling an ambulance on behalf of someone else creates a specific anxiety about urgency; (3) Healthcare professionals experience conflict around fuelling demand for ambulances.ConclusionsPrevious work suggests a range of sociodemographic factors that may be associated with choosing ambulance care in preference to alternatives. Building on established sociological models, this work helps understand how candidacy is displayed during the negotiation of eligibility for ambulance care. Seeking urgent assistance on behalf of another often requires specific support and different strategies. Use of EMS for such problems-although inefficient-is often conceptualised as 'rational' by service users. Public health strategies that seek to advise the public about appropriate use of EMS need to consider how individuals conceptualise an 'emergency' situation.

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Project description:BackgroundAcute Day Units (ADUs) provide intensive, non-residential, short-term treatment for adults in mental health crisis. They currently exist in approximately 30% of health localities in England, but there is little research into their functioning or effectiveness, and how this form of crisis care is experienced by service users. This qualitative study explores the views and experiences of stakeholders who use and work in ADUs.MethodsWe conducted 36 semi-structured interviews with service users, staff and carers at four ADUs in England. Data were analysed using thematic analysis. Peer researchers collected data and contributed to analysis, and a Lived Experience Advisory Panel (LEAP) provided perspectives across the whole project.ResultsBoth service users and staff provided generally positive accounts of using or working in ADUs. Valued features were structured programmes that provide routine, meaningful group activities, and opportunities for peer contact and emotional, practical and peer support, within an environment that felt safe. Aspects of ADU care were often described as enabling personal and social connections that contribute to shifting from crisis to recovery. ADUs were compared favourably to other forms of home- and hospital-based acute care, particularly in providing more therapeutic input and social contact. Some service users and staff thought ADU lengths of stay should be extended slightly, and staff described some ADUs being under-utilised or poorly-understood by referrers in local acute care systems.ConclusionsMulti-site qualitative data suggests that ADUs provide a distinctive and valued contribution to acute care systems, and can avoid known problems associated with other forms of acute care, such as low user satisfaction, stressful ward environments, and little therapeutic input or positive peer contact. Findings suggest there may be grounds for recommending further development and more widespread implementation of ADUs to increase choice and effective support within local acute care systems.

Dataset Information

Service user and carer experiences of seeking help for a first episode of psychosis: a UK qualitative study.

Background

Method

Results

Conclusion

Publications

Service user and carer experiences of seeking help for a first episode of psychosis: a UK qualitative study.

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