scholarly journals An exploration of the experiences of informal carers supporting a relative living with dementia during and after the move to technology-enriched supported accommodation

2019 ◽  
Vol 41 (1) ◽  
pp. 1-28 ◽  
Author(s):  
Janeet Rondon-Sulbaran ◽  
Jean Daly-Lynn ◽  
Brendan McCormack ◽  
Assumpta Ryan ◽  
Suzanne Martin
Keyword(s):  
Lived Experience ◽  
Smart Home ◽  
Community Settings ◽  
Structured Interviews ◽  
Policy Makers ◽  
Supported Accommodation ◽  
Care Giving ◽  
The People ◽  
Informal Carers ◽  
Provision Of Care

AbstractThe aim of this study was to explore the experiences of family carers supporting a relative living with dementia during and after the move to technology-enriched supported accommodation (TESA). The paper explores the informal carers (ICs) roles, the factors prompting the move to TESA, alongside their perceptions of their relatives’ experience of the move and of life in a technology-enriched environment. Within a qualitative study 25 semi-structured interviews were conducted with ICs and data were analysed following a thematic approach. Four themes were identified, reflecting the shift in roles and identity of both ICs and persons living with dementia. The move to TESA was linked to a perceived reduction in care-giving pressures, with positive outcomes reported for both the ICs and the people living with dementia. Smart home technologies in the facilities did not appear to impact on the decision-making during transition, however, they were valued as part of the lived experience for the people living with dementia within the TESA facilities. These findings are relevant to policy makers, commissioners and providers of services to highlight the engagement of all stakeholders in the provision of care for people living with dementia and their families early from diagnosis in order to facilitate person-centred practices in community settings.

scholarly journals The transition to technology-enriched supported accommodation (TESA) for people living with dementia: the experience of formal carers

2019 ◽  
Vol 40 (10) ◽  
pp. 2287-2308
Author(s):  
Janeet Rondon-Sulbaran ◽  
Jean Daly Lynn ◽  
Brendan McCormack ◽  
Assumpta Ryan ◽  
Suzanne Martin
Keyword(s):  
Job Satisfaction ◽  
Service Providers ◽  
Assistive Technologies ◽  
Small Scale ◽  
Structured Interviews ◽  
Policy Makers ◽  
Supported Accommodation ◽  
Care Giving ◽  
Practice Framework

AbstractThis paper presents the experiences of formal carers working in technology-enriched supported accommodation for people living with dementia, examining their care-giving role from a person-centred care perspective. Within a qualitative study, 21 semi-structured interviews were conducted with formal carers and data were analysed following a thematic approach. Four main themes were identified that mapped to the attributes of the person-centred practice framework (PCPF): promoting choice and autonomy, staffing model, using assistive technology and feeling that ‘you're doing a good job’. Central to person-centred practice in these settings was the promotion of choice, autonomy and independence. The dichotomy between safety and independence was evident, curtailing the opportunities within the environmental enablers and associated embedded assistive technologies. Formal carers reported considerable job satisfaction working in these settings. The small-scale, home-like facilities seemed to have a positive effect on job satisfaction. These findings are relevant to policy makers, commissioners and service providers, highlighting the facilitators of person-centred care in community dwellings for people living with dementia and the role of formal carers in promoting this approach.

scholarly journals Emerging Model Villages in India

2019 ◽  
Vol 19 (2) ◽  
pp. 237-258
Author(s):  
Sanhita Rahul Joshi
Keyword(s):  
Rural Areas ◽  
Analytical Framework ◽  
Rural Landscape ◽  
Government Support ◽  
Constitutional Amendment ◽  
Structured Interviews ◽  
Policy Makers ◽  
Grass Roots ◽  
The People ◽  
Community People

Although India no more lives in its villages, the rural population is still sizeable and, more importantly, it reels under the pressure of extreme poverty, pitiable basic amenities, and dearth of livelihood opportunities. Urbanisation and urban growth has captured the attention of government and policy makers especially in the post liberalisation period. However, much needs to be done to improve the conditions of the people living in rural areas. Strengthening of village democracy was considered as a possible solution to resolving issues at the grass-roots level. This paved way for the historic 73rd Constitutional Amendment Act (CAA) in 1993 which sought to empower people at the base of India’s federal polity. Encouraging people’s participation in the process of development, policy making and its implementation was the fundamental objective of this legislation. Twenty- five years have passed since the adoption of the 73rd CAA in 1993 but still much needs to be done. There is an urgent need to transform the rural landscape of India and bring it on a par with its urban counterparts while retaining the soul of rural life. The case of village Punsari from the Sabharkantha District of the state of Gujarat (India) is unique as it stands out as a smart and model village. All the modern amenities found in an urban area are available in this village. Using descriptive analytical framework, the paper aims to argue that such smart villages are a ray of hope for the rural revitalisation in Indian countryside. Semi-structured interviews with the local leaders, officers, and stakeholders form an important part of the research used to generate insights and conclusions. The paper argues that grass-roots leadership, community participation, decentralisation of powers to local bodies in rural areas, and financial support in the form of various government schemes can bring far-reaching changes in the rural landscape of India. Punsari represents a classic example as well as an exemplar of concerted efforts of elected leaders, community people, and government support to bring about transformation and make villages smart as well as sustainable.

The making of a cornerstone

2018 ◽  
pp. 31-59
Author(s):  
Julian M. Simpson
Keyword(s):  
Primary Care ◽  
General Practice ◽  
Medical Specialty ◽  
Professional Autonomy ◽  
Combined Effect ◽  
Community Settings ◽  
Policy Makers ◽  
Industrial Areas ◽  
Provision Of Care

Chapter 1 describes the evolution of British general practice between the 1940s and the 1980s, a period during which it took on a role as the ‘cornerstone’ of the NHS. In the years that immediately followed the inception of the NHS in 1948, the field’s status was low and the Collings report of 1950 offered a damning assessment of the care it offered. Gradually however, policy makers placed an increasing focus on the provision of care in community settings rather than the more costly environment of hospitals. In parallel, general practice went through a process of professionalisation and was recognised as a medical specialty. The combined effect of these developments was to consolidate the position of primary care at the heart of the British healthcare system. General practice nevertheless remained a fragmented field, with practitioners enjoying a great deal of professional autonomy. South Asian migrant doctors were key to these developments. General practice remained unpopular with British-trained doctors, so the presence of migrant doctors masked a recruitment crisis which was particularly acute in industrial areas. The fragmented nature of general practice also resulted in them having a significant impact on the nature of care on a day-to-day basis.

Feeding the Australian family: challenges for mothers, nutrition and equity

2019 ◽  
Vol 35 (4) ◽  
pp. 771-778 ◽  
Author(s):  
Kaye Mehta ◽  
Sue Booth ◽  
John Coveney ◽  
Lyndall Strazdins
Keyword(s):  
Lived Experience ◽  
South Australia ◽  
Social Determinant ◽  
Food Provisioning ◽  
Structured Interviews ◽  
Policy Makers ◽  
Nutrition Guidelines ◽  
Nutritional Guidelines ◽  
Australian Family ◽  
Employed Mothers

Abstract Australian women shoulder the bulk of household duties including family food provisioning, despite increasing participation in the workforce. This research aimed to understand employed mothers’ daily-lived experience of family food provisioning, in particular, the intersection between family food provisioning, gender inequality and nutritional guidelines as they impact women’s time and health. Semi-structured interviews were conducted with 22 employed mothers in South Australia. Participants had at least one child aged less than 13 years. Qualitative data was analysed using a thematic content approach. Time-scarcity was common and associated with stress in relation to family food provisioning; this relationship was particularly apparent among employed mothers who were also studying. Most mothers valued nutrition and strove to provide nutritious meals, although they tended to work from their own nutritional understandings, not the national nutrition guidelines; they saw the nutrition guidelines as unhelpful because of the time demands that were implied. The study invites policy makers, practitioners and researchers to consider time for family food provisioning as a social determinant of family as well as women’s health, and structural strategies to address this health inequity for women.

scholarly journals “He Just Doesn’t Want to Get Out of the Chair and Do It”: The Impact of Apathy in People with Dementia on Their Carers

2021 ◽  
Vol 18 (12) ◽  
pp. 6317
Author(s):  
Chern Yi Marybeth Chang ◽  
Waqaar Baber ◽  
Tom Dening ◽  
Jennifer Yates
Keyword(s):  
Lived Experience ◽  
Interpretative Phenomenological Analysis ◽  
Psychological Symptom ◽  
Subjective Experiences ◽  
Structured Interviews ◽  
The People ◽  
People With Dementia ◽  
Societal Level ◽  
Person With Dementia ◽  
The Impact

Apathy, defined as a lack of motivation, is a prevalent and persistent behavioural and psychological symptom of dementia. Limited research suggests that apathy is associated with increased carer burden, but there are no studies investigating carers’ subjective experiences of apathy. This study aimed to fill this gap and explore the lived experience of apathy in dementia from the perspectives of the people with dementia and their carers. This article reports on the carers’ perspectives. Six dyads of people with dementia and carers participated in semi-structured interviews, which were analysed using interpretative phenomenological analysis. Three superordinate themes were identified: (1) achieving a balance of conflicting emotions—the challenges of apathy led to feelings of guilt, acceptance, and frustration; (2) new roles imposed by caring, which involved taking on new responsibilities and promoting remaining interests of person with dementia; and (3) having a life of one’s own—coping with apathy by talking to others, and spending time away from the caring role. This study highlighted that carers are caught in a struggle between wanting to involve the person with dementia in decisions and finding that they cannot if they want to overcome the hurdle of apathy. Implications of this study suggest that a wider understanding of apathy at a societal level could lead to the provision of a helpful forum for carers to share their experiences.

scholarly journals Psychological well-being of adolescents with physical disabilities in Zimbabwean inclusive community settings: An exploratory study

2017 ◽  
Vol 6 ◽  
Author(s):  
Jabulani Mpofu ◽  
Maximus M. Sefotho ◽  
Jacobus G. Maree
Keyword(s):  
Lived Experience ◽  
Personal Growth ◽  
Physical Disabilities ◽  
Well Being ◽  
Community Settings ◽  
Psychological Well Being ◽  
Policy Makers ◽  
Face To Face ◽  
Multiple Case ◽  
Community Systems

Background: The purpose of this study was to explore the psychological well-being of adolescents with physical disabilities living in inclusive community settings of Makonde Urban in Zimbabwe. An inclusive community is one that aims to remove exclusionary practices within the community and promote community systems that accept all people irrespective of their difference. Inclusive communities on their own are not uniquely designed for people with disabilities, but most developing countries have adopted them as a basic strategy to influence and enhance psychological well-being of people with disabilities.Methods: A constructivist lived experience perspective underpinned this research, in which multiple case studies were used to interact with the participants on inclusion and psychological well-being of adolescents with physical disabilities. Purposive sampling was used to select 14 participants (9 males and 5 females). Data were collected through face-to-face interviews and transcribed verbatim. Four themes emerged from the thematic analysis of data sources.Results: It was found that participants who were adolescents with physical disabilities living in inclusive community settings of Makonde Urban in Zimbabwe were having high levels of autonomy and choice, purpose in life, positive relations with others and good personal growth and self-acceptance.Conclusion: The findings of this study should enable inclusive communities’ policy-makers and researchers to better understand the psychological well-being of adolescents with physical disabilities living in inclusive communities.

scholarly journals The invisible contract: shifting care from the hospital to the home

2007 ◽  
Vol 31 (2) ◽  
pp. 193 ◽  
Author(s):  
Briony Dow ◽  
John McDonald
Keyword(s):  
Hospital Treatment ◽  
Ageing Population ◽  
Structured Interviews ◽  
Policy Makers ◽  
Institutional Settings ◽  
Program Support ◽  
Low Levels ◽  
Informal Carers ◽  
The Impact ◽  
Care Costs

The ageing population and associated burgeoning health care costs have resulted in a shift of care from institutional settings to home and communitybased care. As one example, rehabilitation-in-thehome (RITH) programs are becoming increasingly prevalent. These programs either substitute or supplement in-hospital treatment by providing multidisciplinary rehabilitation and support services in the client?s own home. This paper investigates the impact of RITH programs on informal carers. Semi-structured interviews carried out with caregivers and staff revealed a complex and contradictory interpretation of informal caring. Analysis of carers? interviews revealed: an assumption by themselves and others (including RITH staff) that they would provide care; the intimate, arduous and relentless work of caring; lack of consultation about discharge; lack of recognition and reimbursement; and low levels of program support for them as carers. Carers are integral to the successful rehabilitation of the client, but they occupy a marginal status within the program. An invisible contract consigns to them substantial care-work that was previously provided by the hospital. Informal carers in RITH programs can be seen as disenfranchised care contractors. This has implications for policy makers, program managers and researchers.

Serving the People in Long Beach, California: Advancing Justice for Southeast Asian Youth through Community University Research Partnerships

2019 ◽  
Vol 16 (1-2) ◽  
pp. 1-34
Author(s):  
R. Varisa Patraporn
Keyword(s):  
Asian American ◽  
Research Work ◽  
Community Based Participatory Research ◽  
Youth Empowerment ◽  
Long Beach ◽  
Structured Interviews ◽  
Research Partnerships ◽  
Community Needs ◽  
The People ◽  
The Impact

Khmer Girl’s in Action is a nonprofit that successfully utilizes community-based participatory research (CBPR) with university partners to create social change for youth in Long Beach, CA. Based on semi-structured interviews and content analysis of news articles, I explore the impact and sustainability of this research work and the research partnerships. Findings highlight impacts such as youth empowerment, heightened awareness around community needs, policy change, and CBPR curriculum improvements in the field as impacts. Sustainability requires integrating research into program funding, utilizing a tailored training curriculum, building on community members prior relationships, and selecting partners that share common goals, levels of commitment, and flexibility. As funders demand more data to justify community needs, understanding more examples of such work in the Asian American community will be useful for informing future partnerships.

scholarly journals Smart Cities in Turkey: Approaches, Advances and Applications with Greater Consideration for Future Urban Transport Development

Energies ◽  
2019 ◽  
Vol 12 (12) ◽  
pp. 2308 ◽  
Author(s):  
Can Bıyık
Keyword(s):  
Urban Areas ◽  
Planning Process ◽  
Smart Cities ◽  
Radical Change ◽  
Urban Transport ◽  
Transport Systems ◽  
Structured Interviews ◽  
Policy Makers ◽  
Comprehensive Survey ◽  
Future Vision

The smart city transport concept is viewed as a future vision aiming to undertake investigations on the urban planning process and to construct policy-pathways for achieving future targets. Therefore, this paper sets out three visions for the year 2035 which bring about a radical change in the level of green transport systems (often called walking, cycling, and public transport) in Turkish urban areas. A participatory visioning technique was structured according to a three-stage technique: (i) Extensive online comprehensive survey, in which potential transport measures were researched for their relevance in promoting smart transport systems in future Turkish urban areas; (ii) semi-structured interviews, where transport strategy suggestions were developed in the context of the possible imaginary urban areas and their associated contextual description of the imaginary urban areas for each vision; (iii) participatory workshops, where an innovative method was developed to explore various creative future choices and alternatives. Overall, this paper indicates that the content of the future smart transport visions was reasonable, but such visions need a considerable degree of consensus and radical approaches for tackling them. The findings offer invaluable insights to researchers inquiring about the smart transport field, and policy-makers considering applying those into practice in their local urban areas.

scholarly journals User testing a patient information resource about potential complications of vaginally inserted synthetic mesh

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Nikolina Angelova ◽  
Louise Taylor ◽  
Lorna McKee ◽  
Naomi Fearns ◽  
Tracey Mitchell
Keyword(s):  
Lived Experience ◽  
Patient Information ◽  
Pelvic Organ ◽  
Synthetic Mesh ◽  
Information Resource ◽  
User Testing ◽  
Structured Interviews ◽  
Convenience Sample ◽  
Asking Questions ◽  
Direct Guidance

Abstract Background Vaginal mesh implants are medical devices used in a number of operations to treat stress urinary incontinence and pelvic organ prolapse. Although many of these operations have delivered good outcomes, some women have experienced serious complications that have profoundly affected their quality of life. To ensure that evolving patient information is up-to-date, accurate and appropriate, the Transvaginal Mesh Oversight Group ‘user-tested’ a newly developed Scottish patient resource, the first to focus exclusively on the issue of complications. The aim of this research was to gather feedback on usability, content, language and presentation to inform the development of the resource from a user perspective. Methods The experience of using the patient resource was captured through semi-structured interviews that followed a ‘think-aloud’ protocol. The interviewer observed each participant as they went through the resource, asking questions and making field notes. Participants’ comments were then categorised using a validated model of user experience and subsequently analysed thematically. Results Thirteen people participated in the user testing interviews, including women with lived experience of mesh implants (n = 7), a convenience sample of staff working for Healthcare Improvement Scotland (n = 5) and a patient’s carer (n = 1). The majority of participants considered the resource as clear and helpful. Respondents reported that some presentational aspects promoted usability and understandability, including the use of a font that is easy to read, bullet lists, coloured headings and simple language. Barriers included the reliance on some technical language and an explicit anatomical diagram. Participants endorsed the valuable role of health professionals as co-mediators of patient information. Conclusions The findings illustrate the value of undertaking in-depth user-testing for patient information resources before their dissemination. The study highlighted how the direct guidance or navigation of a patient information resource by a health professional could increase its salience and accuracy of interpretation by patients, their families and carers. These insights may also be useful to other developers in improving patient information.

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