Service user involvement: impact and participation: a survey of service user and staff perspectives

Omeni, Edward; Barnes, Marian; MacDonald, Dee; Crawford, Mike; Rose, Diana

doi:10.1186/s12913-014-0491-7

Cited by 108 publications

(111 citation statements)

References 30 publications

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“…Such participation can lead to more accessible and acceptable health services, enhance service development and improve the responsiveness of mental health services (Crawford et al 2002;Goodwin & Happell, 2008;Tambuyzer et al 2014;Bee et al 2015). Additional reported benefits include better therapeutic relationships, improved self-esteem and confidence, greater empowerment in relation to recovery and increased service satisfaction (Crawford et al 2002;Thornicroft & Tansella, 2005;Henderson et al 2009;Tambuyzer et al 2014;Omeni et al 2014;Whiston et al 2017), compared with traditional models of care.…”

Section: Introductionmentioning

confidence: 99%

Service user and caregiver involvement in mental health system strengthening in low- and middle-income countries: a cross-country qualitative study

Lempp

Abayneh

Gurung³

et al. 2017

Epidemiol Psychiatr Sci

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Aims.The aims of this paper are to: (i) explore the experiences of involvement of mental health service users, their caregivers, mental health centre heads and policy makers in mental health system strengthening in three low- and middle-income countries (LMICs) (Ethiopia, Nepal and Nigeria); (ii) analyse the potential benefits and barriers of such involvement; and (iii) identify strategies required to achieve greater service user and caregiver participation.Methods.A cross-country qualitative study was conducted, interviewing 83 stakeholders of mental health services.Results.Our analysis showed that service user and caregiver involvement in the health system strengthening process was an alien concept for most participants. They reported very limited access to direct participation. Stigma and poverty were described as the main barriers for involvement. Several strategies were identified by participants to overcome existing hurdles to facilitate service user and caregiver involvement in the mental health system strengthening process, such as support to access treatment, mental health promotion and empowerment of service users. This study suggests that capacity building for service users, and strengthening of user groups would equip them to contribute meaningfully to policy development from informed perspectives.Conclusion.Involvement of service users and their caregivers in mental health decision-making is still in its infancy in LMICs. Effective strategies are required to overcome existing barriers, for example making funding more widely available for Ph.D. studies in participatory research with service users and caregivers to develop, implement and evaluate approaches to involvement that are locally and culturally acceptable in LMICs.

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Section: Introductionmentioning

confidence: 99%

Service user and caregiver involvement in mental health system strengthening in low- and middle-income countries: a cross-country qualitative study

Lempp

Abayneh

Gurung³

et al. 2017

Epidemiol Psychiatr Sci

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show abstract

“…This is true regardless of user-involvement being at the heart of the recommendations for a more modern and sustainable mental healthcare system [10] [11] [12] [13] [14], and irrespective of research designating that service user involvement offers a promising pathway towards better quality healthcare, more efficient care and improved population health [15] [16] [17].…”

Section: Introductionmentioning

confidence: 99%

Collaborating with Young Adults Diagnosed with Schizophrenia: A Participatory Design Study to Shape the Healthcare System

Terp¹,

Bjørnes²,

Jørgensen³

et al. 2017

OJN

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Introduction: Disengagement from mental health services in young adults with schizophrenia has been associated with dissatisfaction and unmet needs. Striving to improve engagement, we invited service users recently diagnosed with schizophrenia to be co-designers of a smartphone technology that will be responsive to their needs. Aim: This paper reports the first phase of a threephased participatory design process. The objective was to identify needs of support in young adults recently diagnosed with schizophrenia and to generate ideas of how the needs could be accommodated using smartphone technology. Methods: Participatory design guided the research process and a qualitative approach was used to generate and analyse the data. Data were generated by means of participant observations (n = 45 hours) and interviews (n = 6) with young adults from a first episode psychosis program in Denmark. Findings: Low levels of knowledge and high levels of uncertainties are characteristic of young adults recently diagnosed with schizophrenia, bringing about a vast need of support in order for them to gain power over their new life situation. Our study suggests that the smartphone may be used to foster empowerment by guiding the young adult's actions in situ, providing comprehensive and easily understood information on the go, allowing for recovery tracking, and notification of mental health changes, providing medication overview and giving easy access to healthcare providers. Conclusion: Young adults recently diagnosed with schizophrenia require comprehensive support in order to become empowered to confidently manage their new life situation. The smartphone holds this potential by offering flexible collaboration and timely access to self-management resources.

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“…During the past 35 years, health policies, educational curricula and institutional health organizations in the western world have highlighted active patient participation in healthcare decision-making [2]- [4]. Patient participation in care, treatment and related decision-making is deemed desirable in health policies and forms part of legal rights movements in many western countries [5]. However, there is no consensus on how to define "participation" [6] [7].…”

Section: Introductionmentioning

confidence: 99%

Older Patients’ Involvement in Shared Decision-Making—A Systematic Review

Holm¹,

Berland²,

Severinsson³

2016

OJN

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Shared decision-making has been described as allowing patients to gain more control over their life situation and feel less helpless. The aim of this systematic review was to describe the involvement of older patients in shared decision-making in community settings. In accordance with the systematic review method, a total of 2468 abstracts were read, after which nine quantitative studies were included. A qualitative thematic analysis was performed and two themes emerged; increased understanding of self-management and a desire to strengthen one's position in relationship with professionals, both of which were essential for empowering older patients to participate in shared decision-making. Older patients' shared decision-making was seen as a struggle to maintain their autonomy in different areas of everyday life. Emotional and psychological problems made their position more difficult. In order to empower them in relationships with healthcare professionals, older patients require more knowledge (self-efficacy) and information about their illness, which could strengthen their position in the decision-making process. They also need a greater awareness of decisional conflicts that may arise. Age, gender and health status influence older patients' chance of being respected and taken seriously in relationship with professionals.

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Service user involvement: impact and participation: a survey of service user and staff perspectives

Cited by 108 publications

References 30 publications

Service user and caregiver involvement in mental health system strengthening in low- and middle-income countries: a cross-country qualitative study

Service user and caregiver involvement in mental health system strengthening in low- and middle-income countries: a cross-country qualitative study

Collaborating with Young Adults Diagnosed with Schizophrenia: A Participatory Design Study to Shape the Healthcare System

Older Patients’ Involvement in Shared Decision-Making—A Systematic Review

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