Service users and care providers’ experiences of tertiary combined fetal medicine clinics

For adults with learning disabilities, touch is a necessary element of their everyday care. Yet touch delivered by care providers is a contentious and marginal practice, which is often avoided due to fears of abuse allegations, and the effects of touch avoidance can be significantly detrimental to the quality of care provided. The Safe Touch pilot project, developed with a London-based organization providing care to adults with learning disabilities, including those with profound and multiple learning disabilities (PMLD), used performing arts practices and massage to help the staff develop and utilize ‘positive’ touch – touch for communication, interaction and well-being – when working with service users. Fifteen service users with learning disabilities and PMLD along with the organization’s staff participated in the project. Drawing on the project’s processes and findings, some successes and limitations in employing performing arts activities with care staff to increase the use of positive touch with people with PMLD were identified.

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Providing gender-affirming hormone therapy through primary care: Service users' and health professionals' experiences of a pilot clinic

10.26686/wgtn.12693110.v1 ◽

2020 ◽

Author(s):

A Ker ◽

Gloria Fraser ◽

Antonia Lyons ◽

C Stephenson ◽

T Fleming

Keyword(s):

Primary Care ◽

Health Care ◽

New Zealand ◽

Hormone Therapy ◽

Health Care Providers ◽

Health Professionals ◽

Care Service ◽

Gender Diversity ◽

Service Users ◽

Care Providers

© 2020 CSIRO Publishing Journal Compilation © Royal New Zealand College of General Practitioners 2020 This is an open access article licensed under a. INTRODUCTION: Primary health care providers are playing an increasingly important role in providing gender-affirming health care for gender diverse people. This article explores the experiences of a primary care-based pilot clinic providing gender-affirming hormone therapy in Wellington, New Zealand. AIM: To evaluate service users' and health professionals' experiences of a pilot clinic at Mauri Ora (Victoria University of Wellington's Student Health and Counselling Service) that provided gender-affirming hormones through primary care. METHODS: In-depth interviews were conducted with four (out of six) service users and four health professionals about their perspectives on the clinic. Interviews were transcribed verbatim and analysed using thematic analysis. RESULTS: Three themes were identified in service users' interviews, who discussed receiving affirming care due to the clinic's accessibility, relationship-centred care and timeliness. Three themes were identified in the health professionals' interviews, who described how the clinic involves partnership, affirms users' gender and agency, and is adaptable to other primary care settings. Both service users and health professionals discussed concerns about the lack of adequate funding for primary care services and the tensions between addressing mental health needs and accessing timely care. DISCUSSION: The experiences of service users and health professionals confirm the value of providing gender-affirming hormone therapy in primary care. Models based in primary care are likely to increase accessibility, depathologise gender diversity and reduce wait times.

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Fortunate and fearful: emotions evoked by home-care policies for older people in Ireland

Emotions and Society ◽

10.1332/263169020x15843025702815 ◽

2020 ◽

Vol 2 (1) ◽

pp. 61-78

Author(s):

Luciana Lolich ◽

Virpi Timonen

Keyword(s):

Home Care ◽

Home Care Services ◽

System Level ◽

Service Users ◽

Care Providers ◽

Term Care ◽

Care Services ◽

Care Workers ◽

Care Policies ◽

Care Package

This article examines the emotions of fear and feeling fortunate experienced by key actors in home-care services in Ireland. We take a relational approach to emotions; that is to say, an understanding that emotions are produced in social interactions and play an essential part in how people engage with, and respond to, long-term care policies. The study involved focus groups and in-depth interviews with 104 participants. Our findings show that the most vulnerable participants – service users and care workers on precarious contracts – feel fortunate or fearful about outcomes that had, or would have, a direct impact on them: respectively, having a good carer and obtaining job satisfaction, or losing a home-care package and not having enough work. Professionals were more likely to speak about luck and fear, not in relation to what could happen to them directly but in relation to the fate of service users and care workers. The unregulated home-care services in Ireland have influenced actors to construe their own and others’ participation in the system as increasingly individualised, where desired outcomes depend on one’s good luck or strong personal relationships. For the system to work properly trust needs to be present not only at the micro level of individual relationships but also at a system level. This could lead to a decline in emotions that centre on feeling fortunate and fearful, and an increase in expressions of trust and a sense of control by both care providers and care recipients.

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Rationale and design of a complex intervention measuring the impact and processes of social accountability applied to contraceptive programming: CaPSAI Project

Gates Open Research ◽

10.12688/gatesopenres.13075.1 ◽

2020 ◽

Vol 4 ◽

pp. 26 ◽

Cited By ~ 2

Author(s):

Petrus S Steyn ◽

Victoria Boydell ◽

Joanna Paula Cordero ◽

Heather McMullen ◽

Ndema Habib ◽

...

Keyword(s):

Reproductive Health ◽

Health Services ◽

Health Care Providers ◽

Contextual Factors ◽

Social Accountability ◽

Control Group ◽

Service Users ◽

Care Providers ◽

The Impact

Background: There are numerous barriers leading to a high unmet need for family planning and contraceptives (FP/C). These include limited knowledge and information, poor access to quality services, structural inefficiencies in service provision and inadequately trained and supervised health professionals. Recently, social accountability programs have shown promising results in addressing barriers to accessing sexual and reproductive health services. As a highly complex participatory process with multiple and interrelated components, steps and actors, studying social accountability poses methodological challenges. The Community and Provider driven Social Accountability Intervention (CaPSAI) Project study protocol was developed to measure the impact of a social accountability process on contraceptive uptake and use and to understand the mechanisms and contextual factors that influence and generate these effects (with emphasis on health services actors and community members). Methods: CaPSAI Project is implementing a social accountability intervention where service users and providers assess the quality of local FP/C services and jointly identify ways to improve the delivery and quality of such services. In the project, a quasi-experimental study utilizing an interrupted time series design with a control group is conducted in eight intervention and eight control facilities in each study country, which are Ghana and Tanzania. A cross-sectional survey of service users and health care providers is used to measure social accountability outcomes, and a cohort of women who are new users of FP/C is followed up after the completion of the intervention to measure contraceptive use and continuation. The process evaluation utilizes a range of methods and data sources to enable a fuller description of how the findings were produced. Conclusion: This complex study design could provide researchers and implementers with the means to better measure and understand the mechanisms and contextual factors that influence social accountability processes in reproductive health, adding important findings to the evidence base.

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Implementing a Digital Tool to Support Shared Care Planning in Community-Based Mental Health Services: Qualitative Evaluation

Journal of Medical Internet Research ◽

10.2196/14868 ◽

2020 ◽

Vol 22 (3) ◽

pp. e14868 ◽

Cited By ~ 1

Author(s):

Christalla Pithara ◽

Michelle Farr ◽

Sarah A Sullivan ◽

Hannah B Edwards ◽

William Hall ◽

...

Keyword(s):

Mental Health ◽

Mental Health Services ◽

Health Services ◽

Health Care Providers ◽

Care Pathway ◽

Service Users ◽

Care Planning ◽

Care Providers ◽

Digital Tool ◽

Implementation Phase

Background Mental health services aim to provide recovery-focused care and facilitate coproduced care planning. In practice, mental health providers can find supporting individualized coproduced care with service users difficult while balancing administrative and performance demands. To help meet this aim and using principles of coproduction, an innovative mobile digital care pathway tool (CPT) was developed to be used on a tablet computer and piloted in the West of England. Objective The aim of this study was to examine mental health care providers’ views of and experiences with the CPT during the pilot implementation phase and identify factors influencing its implementation. Methods A total of 20 in-depth telephone interviews were conducted with providers participating in the pilot and managers in the host organization. Interviews were audio recorded, transcribed, anonymized, and thematically analyzed guided by the Consolidated Framework for Implementation Research. Results The tool was thought to facilitate coproduced recovery-focused care planning, a policy and organizational as well as professional priority. Internet connectivity issues, system interoperability, and access to service users’ health records affected use of the tool during mobile working. The organization’s resources, such as information technology (IT) infrastructure and staff time and IT culture, influenced implementation. Participants’ levels of use of the tool were dependent on knowledge of the tool and self-efficacy; perceived service-user needs and characteristics; and perceptions of impact on the therapeutic relationship. Training and preparation time influenced participants’ confidence in using the tool. Conclusions Findings highlight the importance of congruence between staff, organization, and external policy priorities and digital technologies in aiding intervention engagement, and the need for ongoing training and support of those intended to use the technology during and after the end of implementation interventions.

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Patient support groups: A survey of United Kingdom practice, purpose and performance

Journal of the Intensive Care Society ◽

10.1177/1751143720952017 ◽

2020 ◽

pp. 175114372095201

Author(s):

Jeremy Groves ◽

Julie Cahill ◽

Gordon Sturmey ◽

Mo Peskett ◽

Dorothy Wade ◽

...

Keyword(s):

Critical Care ◽

Peer Support ◽

Support Groups ◽

Health Care Providers ◽

Stressful Event ◽

Service Users ◽

Care Providers ◽

Patient Support ◽

And Performance ◽

The Uk

Background Critical care survivors face physical, psychological and socio-economic burdens. Peer support is acknowledged as a way individuals can face, accept and overcome the challenges arising from a stressful event. We sought to examine the provision and benefits of peer support to critical care survivors in the UK. Method We distributed a survey, devised by the patients and relatives committee of the Intensive Care Society and ICUsteps, to contacts in 163 UK Trusts/hospitals with critical care departments. The benefit to individuals was assessed by seeking the views of attendees of two support groups. Results A response was received from 91 (56%) of the critical care departments. Of these, 46 (48% of respondents) have patient support groups. Our analysis of comments from 30 people is that support groups greatly benefit service users and staff. Conclusions Attendees of patient support groups gave highly positive comments about the service yet provision of patient support groups in the UK is not universal. Recommendations We make a series of recommendations for consideration by UK health care providers.

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Rationale and design of a complex intervention measuring the impact and processes of social accountability applied to contraceptive programming: CaPSAI Project

Gates Open Research ◽

10.12688/gatesopenres.13075.2 ◽

2020 ◽

Vol 4 ◽

pp. 26

Author(s):

Petrus S Steyn ◽

Victoria Boydell ◽

Joanna Paula Cordero ◽

Heather McMullen ◽

Ndema Habib ◽

...

Keyword(s):

Reproductive Health ◽

Health Services ◽

Health Care Providers ◽

Contextual Factors ◽

Social Accountability ◽

Control Group ◽

Service Users ◽

Care Providers ◽

The Impact

Background: There are numerous barriers leading to a high unmet need for family planning and contraceptives (FP/C). These include limited knowledge and information, poor access to quality services, structural inefficiencies in service provision and inadequately trained and supervised health professionals. Recently, social accountability programs have shown promising results in addressing barriers to accessing sexual and reproductive health services. As a highly complex participatory process with multiple and interrelated components, steps and actors, studying social accountability poses methodological challenges. The Community and Provider driven Social Accountability Intervention (CaPSAI) Project study protocol was developed to measure the impact of a social accountability intervention on contraceptive uptake and use and to understand the mechanisms and contextual factors that influence and generate these effects (with emphasis on health services actors and community members). Methods: CaPSAI Project is implementing a social accountability intervention where service users and providers assess the quality of local FP/C services and jointly identify ways to improve the delivery and quality of such services. In the project, a quasi-experimental study utilizing an interrupted time series design with a control group is conducted in eight intervention and eight control facilities in each study country, which are Ghana and Tanzania. A cross-sectional survey of service users and health care providers is used to measure social accountability outcomes, and a cohort of women who are new users of FP/C is followed up after the completion of the intervention to measure contraceptive use and continuation. The process evaluation utilizes a range of methods and data sources to enable a fuller description of how the findings were produced. Conclusion: This complex study design could provide researchers and implementers with the means to better measure and understand the mechanisms and contextual factors that influence social accountability processes in reproductive health, adding important findings to the evidence base.

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“I fought my entire way”: Experiences of declining maternity care services in British Columbia

PLoS ONE ◽

10.1371/journal.pone.0252645 ◽

2021 ◽

Vol 16 (6) ◽

pp. e0252645

Author(s):

P. Mimi Niles ◽

Kathrin Stoll ◽

Jessie J. Wang ◽

Stéphanie Black ◽

Saraswathi Vedam

Keyword(s):

British Columbia ◽

Care Provider ◽

Maternity Care ◽

Online Survey ◽

Qualitative Content Analysis ◽

Medical Knowledge ◽

Newborn Care ◽

Disrespect And Abuse ◽

Service Users ◽

Care Providers

Background The 2016 WHO Standards for improving quality of maternal and newborn care in health facilities established patient experience of care as a core indicator of quality. Global health experts have described loss of autonomy and disrespect as mistreatment. Risk of disrespect and abuse is higher when patient and care provider opinions differ, but little is known about service users experiences when declining aspects of their maternity care. Methods To address this gap, we present a qualitative content analysis of 1540 written accounts from 892 service users declining or refusing care options throughout childbearing with a large, geographically representative sample (2900) of childbearing women in British Columbia who participated in an online survey with open-ended questions eliciting care experiences. Findings Four themes are presented: 1) Contentious interactions: “I fought my entire way”, describing interactions as fraught with tension and recounting stories of “fighting” for the right to refuse a procedure/intervention; 2) Knowledge as control or as power: “like I was a dim girl”, both for providers as keepers of medical knowledge and for clients when they felt knowledgeable about procedures/interventions; 3) Morbid threats: “do you want your baby to die?”, coercion or extreme pressure from providers when clients declined interventions; 4) Compliance as valued: “to be a ‘good client’”, recounting compliance or obedience to medical staff recommendations as valuable social capital but suppressing desire to ask questions or decline care. Conclusion We conclude that in situations where a pregnant person declines recommended treatment, or requests treatment that a care provider does not support, tension and strife may ensue. These situations deprioritize and decenter a woman’s autonomy and preferences, leading care providers and the culture of care away from the principles of respect and person-centred care.

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Micro innovation: what, how and who?

Micro-Enterprise and Personalisation ◽

10.1332/policypress/9781447319221.003.0008 ◽

2016 ◽

Author(s):

Catherine Needham ◽

Kerry Allen ◽

Kelly Hall

Keyword(s):

Older People ◽

Social Care ◽

Models Of Care ◽

Service Users ◽

Care Providers ◽

Personal Care ◽

Specific Context ◽

Flexible Approach ◽

Care For Older People ◽

Micro Enterprises

Chapter eight draws on the interviews undertaken with people running care organisations, to bring out three types of innovation - what innovation, how innovation and who innovation. This chapter identifies the different types of innovation that are displayed within the specific context of care; referred to here as what, how and who innovations. In terms of what innovations, some micro-enterprises are delivering services that deviate from the traditional residential, domiciliary and day models of care through the provision of flexible ‘one-to-one support’. Whilst micro-enterprises were offering more flexible services, larger organisations were also offering a broad range of services, and in day provision especially, larger services were found to offer more choice to service users. Whilst it tends to be the what and who innovations within micro-enterprises that are most widely reported, it may be the how innovations that are most important when it comes to the context of social care for older people. For people receiving personal care in the home, the scope for micro providers to take a more flexible approach gives them an advantage over large care providers.

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Providing gender-affirming hormone therapy through primary care: Service users' and health professionals' experiences of a pilot clinic

10.26686/wgtn.12693110 ◽

2020 ◽

Author(s):

A Ker ◽

Gloria Fraser ◽

Antonia Lyons ◽

C Stephenson ◽

T Fleming

Keyword(s):

Primary Care ◽

Health Care ◽

New Zealand ◽

Hormone Therapy ◽

Health Care Providers ◽

Health Professionals ◽

Care Service ◽

Gender Diversity ◽

Service Users ◽

Care Providers

© 2020 CSIRO Publishing Journal Compilation © Royal New Zealand College of General Practitioners 2020 This is an open access article licensed under a. INTRODUCTION: Primary health care providers are playing an increasingly important role in providing gender-affirming health care for gender diverse people. This article explores the experiences of a primary care-based pilot clinic providing gender-affirming hormone therapy in Wellington, New Zealand. AIM: To evaluate service users' and health professionals' experiences of a pilot clinic at Mauri Ora (Victoria University of Wellington's Student Health and Counselling Service) that provided gender-affirming hormones through primary care. METHODS: In-depth interviews were conducted with four (out of six) service users and four health professionals about their perspectives on the clinic. Interviews were transcribed verbatim and analysed using thematic analysis. RESULTS: Three themes were identified in service users' interviews, who discussed receiving affirming care due to the clinic's accessibility, relationship-centred care and timeliness. Three themes were identified in the health professionals' interviews, who described how the clinic involves partnership, affirms users' gender and agency, and is adaptable to other primary care settings. Both service users and health professionals discussed concerns about the lack of adequate funding for primary care services and the tensions between addressing mental health needs and accessing timely care. DISCUSSION: The experiences of service users and health professionals confirm the value of providing gender-affirming hormone therapy in primary care. Models based in primary care are likely to increase accessibility, depathologise gender diversity and reduce wait times.

Download Full-text