View Of Care Research Articles

Evaluation of the ACE employment programme: helping employers to make tailored adjustments for their autistic employees

PurposeThe purpose of this study was to explore the views of autistic people, carers and practitioners regarding the barriers autistic employees face at work (Study 1) and to use these views to inform the design of an employment programme for autistic employees without learning disabilities (Study 2).Design/methodology/approachIn Study 1, 16 (20%) carers, 17 (21%) practitioners and 47 (59%) autistic adults who had been or were currently employed, answered a survey regarding barriers at work. Study 2 evaluates the efficacy of a set of profiling assessment tools (PA) developed to help employers make individually-tailored adjustments for their autistic employees by delivering an employment programme consisting of 15, 8-week work placements.FindingsIn Study 1, only 25% of autistic adults reported having had adjustments in the workplace and all groups reported this as the main barrier – alongside employers’ lack of understanding. Two sets of results demonstrate the efficacy of the PA tools in addressing this barrier. First, a comparative cost simulation revealed a cost-saving in terms of on-job support of £6.67 per participant per hour worked relative to published data from another programme. Second, 83% of autistic employees reported having had the right adjustments at work.Research limitations/implicationsThis is an exploratory study that did not include a comparison group. Hence, it was not possible to evaluate the efficacy of the PA tools relative to a standard employment programme intervention, nor to assess cost reduction, which currently is only estimated from already available published data.Practical implicationsOverall the findings from these studies demonstrate that the time invested in the high-quality assessment of the profile of autistic employees results in saving costs over time and better outcomes.Originality/valueThe originality of the Autism Centre for Employment programme resides in that, unlike other programmes, it shifts the focus from helping autistic employees to helping their employers.

A Systematic Mapping Review of Family Perspectives About Received Mental Health Interventions

Purpose: Families experience their own journey in adjusting to the role of carer. The purpose of this review was to understand from the perspective of families and carers which practices, and health system responses meet their needs in supporting people who experience mental health challenges. Methods: A systematic evidence mapping review was conducted, through searching five electronic databases to identify peer-reviewed studies, written in English and published between the years 2010 and 2020, that prioritized the perspectives of families. Results: Fifty-five studies met the inclusion criteria and were mapped according to the country of author, year, methodology, who delivered, and intervention mode and format. Discussion: The review demonstrated a diversity of interventions with growing numbers of studies considering the view and experiences of carers. There is evidence of increasingly active participation of carers in designing, leading, or facilitating interventions, recognizing the importance of coproduction in tailoring family and carer support.

Genetic counselors, patients', and carers' views on an Australian clinical genetics service information system.

The Genetic Information System (GIS) is an Australian database of family genetic information. This health information technology system has been used by all 31 publicly operated clinical genetics services across New South Wales (NSW) and the Australian Capital Territory (ACT) for over a decade. As these services are separated geographically, the linkage engendered by the GIS facilitates the services to operate as a virtual state-wide service. This study aimed to explore the views of genetic counselors, patients, and carers on the use and storage of family genetic information in the GIS. Data were collected using audio-recorded semi-structured telephone interviews with genetic counselors experienced with using the GIS and focus groups with past patients/carers of the services. Using thematic analysis, four themes were identified from genetic counselor participant interviews (n=12): (a) Shared information is valuable; (b) inconsistent data entry provides a challenge; (c) perceived need for the GIS to be current and integrated with other health systems; and (d) future challenges and strategies for the GIS. Three themes were identified following three focus groups with consumer participants (n=14): (a) access to family genetic information provides a 'clearer picture'; (b) support, but caution, concerning use of information for relatives' health care; and (c) stewardship of family information. Genetic counselors and consumers identified similar advantages and privacy concerns regarding the sharing of family genetic information and all participants wanted patients/carers to be better informed about the GIS early in the genetic counseling process. Consumers were reassured by genetics health professionals' stewardship of their information, but surprised the GIS was not available nationally or for private geneticists or certain non-genetic specialists. These findings may inform further development of the GIS and other clinical genetic databases and lead to increased patient/carer knowledge through education and resource development.

Development of a Psychological Intervention to Promote Meaningful Activity in People Living With Mild Dementia: An Intervention Mapping Approach.

Background and ObjectivesDespite the importance of meaningful activity in mild dementia, only limited data are available on the development of interventions supporting people with mild dementia to engage in meaningful activity. In this article, we describe the development of an intervention that responds to this need.Research Design and MethodsIntervention mapping (IM), an evidence-based approach, was used to develop STAYING ACTIVE (STAYing well and active—schedulINg meaninGful and enjoyAble aCTIvities to promote Vitality and wEll-being in mild dementia). The first step, a needs assessment, comprised a literature review, focus groups, and individual interviews with service users. Performance objectives of the intervention were formulated in Step 2, followed by the development of theory-based methods in Step 3. In Step 4, the new intervention was developed based on data collected in previous steps, existing interventions, and pilot testing. Qualitative data were analyzed using framework analysis.ResultsThe needs assessment indicated that people with dementia and their carers view “staying active” as an important part of “enjoying life.” Adapting to loss through compensation and receiving support were key facilitators of engaging in meaningful activity. Ecological, psychosocial, and activity-oriented theories guided the development of theory-based intervention strategies, which were based on awareness, skills, and addressing barriers of meaningful activity.Discussion and ImplicationsSTAYING ACTIVE is grounded on theory, and service user experiences and aims at promoting meaningful activity in mild dementia. The IM framework may be useful in the development of future psychosocial interventions for people with dementia, facilitating transparency when efficacy is evaluated.

How to prevent and avoid barriers in co-production with family carers living in rural and remote area: an Italian case study

BackgroundCo-production has been widely recognised as a potential means to reduce the dissatisfaction of citizens, the inefficacy of service providers, and conflicts in relations between the former and the latter. However, the benefits of co-production has begun to be questioned: co-production has often been taken for granted, and its effects may not be effective. To understand and prevent unsuccessful citizen and provider collaboration, the recent literature has begun to focus on the causes of co-destruction. This paper investigates how the barriers that may arise during the co-production of a new social service with family carers can be identified and interpreted.MethodsTo investigate this topic, we undertook a single case study - a longitudinal project (Place4Carers (Graffigna et al., BMJ Open 10:e037570, 2020)) intended to co-produce a new social care service with and for the family carers of elderly patients living in rural and remote areas. We organised collaborative co-assessment workshops and semi-structured interviews to collect the views of family carers and service providers on the co-production process. A reflexive approach was used in the analysis for collecting the opinions of the research team that participated in the co-production process.ResultsThe analysis revealed four main co-production barriers: lack of trust, lack of effectiveness of engagement, participants’ inability (or impossibility) to change and the lack of a cohesive partnership among partners. Despite these findings, the project increases carers’ satisfaction, competence and trust in service providers by demonstrating the positive effects of co-production.ConclusionsOur article confirms that co-creation and co-destruction processes may coexist. The role of researchers and service providers is to prevent or remedy co-destruction effects. To this end, we suggest that in co-production projects, more time should be spent co-assessing the project before, during and after the co-production process. This approach would facilitate the adoption of adjustment actions such as creating mutual trust through conviviality among participants and fostering collaborative research between academia and organisations that are not used to working together.

Patient and carer experiences of nutrition in cancer care: a mixed-methods study.

Evidence-based guidelines exist to guide health professionals and services about cancer nutrition care; however, the views of cancer patients and carers are not well understood. This study aimed to understand the experience and needs of cancer patients and carers regarding nutrition care across the care continuum. Using a mixed-methods approach, cancer patients and carers completed a cross-sectional online survey and focus groups. Participants were recruited through health services and cancer organisation consumer networks via email distribution lists, e-newsletters, and social media. Focus groups were audio-recorded, transcribed, and analysed using content analysis. Of 165 survey respondents, only 51% (n=84) reported they talked to a health professional about their nutrition care at any time-point, and only 32% with a dietitian. The majority (84%) of patients and carers felt nutrition was important at one or more time-points in their cancer path, indicating during and after cancer treatment the most important. However, perceived support from health professionals for nutrition care was deemed low at all time-points. Five focus groups were held (n=20; 16 patients, 2 carers, 2 both patients/carers) and five themes emerged: nutrition information, experiences and need; control over diet and nutrition; importance and value of nutrition; access to support; what optimal nutrition care looks like. Patients and carers felt nutrition was important during their cancer path, but perceived support from health professionals for nutrition care was low. This study has highlighted patient and carer nutrition experiences that will inform development of a co-designed optimal cancer nutrition care pathway.

Home care in dementia: The views of informal carers from a co-designed consultation.

BackgroundIn the United Kingdom, there is a current priority for high-quality dementia care provided at home. However, home care or domiciliary care is an area where problems have been reported, in terms of a lack of consistency, coordination and appropriate responses to the specific needs of those with dementia. The views of informal carers, who often must respond to these problems when supporting relatives, are crucial in shedding light on the issues and in seeking to promote solutions.MethodsThis study explored the views of informal carers of those with dementia concerning home care, through a consultation using an electronic survey. The survey questions were designed by informal carers, through a public involvement group within an existing programme of dementia research. The survey elicited responses from 52 informal carers in 2017/18. The data were analysed qualitatively using framework analysis.FindingsCarers’ views focused on the need for investment into meaningful personalisation, recognising the value of providing care and valuing formal carers, systemic failings of care coordination and provision and the importance of ongoing collaboration and care planning.ConclusionBased on a framework drawn from the views of informal carers themselves, this study articulated issues of concern for home care and its delivery for people with dementia. Attempts should be made to make dementia home care more consistently personalised, inclusive and collaborative with informal carers and key others involved. Further areas to explore include working conditions of formal carers and current models utilised in homecare provision.

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The Australian Journal of Primary Health is published by CSIRO PUBLISHING on behalf of the Australian Institute for Primary Care and School of Public Health, La Trobe University in association with the Primary and Community Health Network. The Journal is a refereed, international journal designed to publish articles on a range of issues influencing community health services and primary health care. The focus of the Australian Journal of Primary Health is on the integration of theory and practice in primary health utilising perspectives from a range of disciplines. The Journal publishes research articles, policy reports and analyses, book reviews, case reports, the views of practitioners, consumers, carers, students, and special interest groups, and descriptions of professional practice initiatives in the field of primary health care

Patient, family and carer experiences of nutritional screening: a systematic review.

BackgroundDespite recommendations for nutritional risk screening of all inpatients, outpatients and care home residents, as well as work to assess clinician's experiences and the validity of tools, little attention has been paid to the experiences of patients undergoing nutritional screening. This review aims to synthesise systematically the current evidence regarding nutritional risk screening with respect to the experiences and views of patients, their families and carers.MethodsA systematic search was performed in MEDLINE, Embase, PsychINFO, CINAHL, Web of Science and British Nursing Database (inception – July 2019); with screening terms related to malnutrition, screening tools and experience. Titles, abstracts and full‐text papers were independently reviewed by two reviewers and then quality‐appraised. Qualitative papers and quantitative surveys were included. A narrative review of surveys and a thematic framework synthesis of interviews were used to identify themes.ResultsNine studies, including five qualitative interview papers, were included. Qualitative and quantitative study results were combined using a matrix chart to allow comparison. Surveyed participants reported processes of nutritional screening as acceptable. Three key themes emerged from qualitative data: (i) experience of nutritional screening; (ii) misunderstanding of malnutrition: of causes, role of screening and poor self‐perception of risk; and (iii) barriers to and opportunities for change.ConclusionsAlthough the screening process is acceptable, patients’ misunderstanding and poor knowledge regarding causes and consequences of malnutrition result in reduced risk perception and disbelief or disregard of nutritional screening results. Findings should inform policy and clinical practice, as well as highlight the known paucity of data regarding the effectiveness of screening on clinical outcomes.

Suicide risk assessment in UK mental health services: a national mixed-methods study

Risk assessments are a central component of mental health care. Few national studies have been done in the UK on risk assessment tools used in mental health services. We aimed to examine which suicide risk assessment tools are in use in the UK; establish the views of clinicians, carers, and service users on the use of these tools; and identify how risk assessment tools have been used with mental health patients before suicide. We did a mixed-methods study involving three components: collection and content analysis of risk assessment tools used by UK mental health services; an online survey of clinicians, service-users, and carers; and qualitative telephone interviews with clinicians on their use of risk assessment tools before a suicide death and their views of these tools. The online survey was advertised through the National Confidential Inquiry into Suicide and Safety in Mental Health's (NCISH) website and social media, and it included both quantitative and open-ended qualitative questions, and respondents were recruited through convenience sampling. For the telephone interviews, we examined the NCISH database to identify clinicians who had been responsible for the care of a patient who died by suicide and who had been viewed as being at low or no immediate risk of suicide. We obtained 156 risk assessment tools from all 85 National Health Service mental health organisations in the UK, and 85 (one per each organisation) were included in the analysis. We found little consistency in use of these instruments, with 33 (39%) of 85 organisations using locally developed tools. Most tools aimed to predict self-harm or suicidal behaviour (84 [99%] of 85), and scores were used to determine management decisions (80 [94%]). Clinicians described positive aspects of risk tools (facilitating communication and enhancing therapeutic relationships) but also expressed negative views (inadequate training in the use of tools and their time-consuming nature). Both patients and carers reported some positive views, but also emphasised little involvement during risk assessment, and a lack of clarity on what to do in a crisis. Assessment processes need to be consistent across mental health services and include adequate training on how to assess, formulate, and manage suicide risk. An emphasis on patient and carer involvement is needed. In line with national guidance, risk assessment should not be seen as a way to predict future behaviour and should not be used as a means of allocating treatment. Management plans should be personalised and collaboratively developed with patients and their families and carers. The Healthcare Quality Improvement Partnership.

Person‐centred respite supports: The perspectives of adults with intellectual disabilities in Ireland

Accessible SummaryThis study looks at the experiences of adults with intellectual disabilities using respite services in Ireland. Some adults stayed overnight in a respite house, and others were part of evening and weekend groups.Overall, the adults were happy with their respite supports.They suggested nine important ways that respite services can meet a person's needs and support them to do the things they want to do.The adults said it was important to have fun, time and space, choice, and to be independent at respite. They should have a chance to build friendships and be in groups that work well together. It is important to get on well with staff too. Respite supports must meet different needs. Persons with disabilities should take part in the design and management of respite supports.A national policy for respite in disability services is needed in Ireland. The views and suggestions of persons with disabilities should be considered if a policy is developed.AbstractBackgroundRespite supports are highly valued by persons with disabilities and their families/carers. In Ireland, there has been regular commentary in relation to a lack of respite services, with users and other stakeholders reporting limited access, inequity of provision, and long waiting lists for support.Materials and MethodsMuch of the research on respite focuses on the views of carers, with little account of the experiences of persons with disabilities. This study examines the perspectives of twenty‐eight adults with intellectual disabilities; most are regular users of traditional and/or alternative respite services. Information was gathered through individual interviews and focus groups.FindingsParticipants identified nine key elements of a person‐centred respite service; fun, time and space, choice, independence, friendships, compatible groupings, positive relationships with staff, flexible supports, and user involvement in service design and delivery.ConclusionsPerson‐centred supports should enable individuals to achieve maximum well‐being and flourish in all aspects of their lives. This study found that at a personal level, respite services and the interactions that occur within them are person‐centred in that they support the individual to do the things they want to do, make everyday choices, try new activities, develop positive relationships, and have a good quality of life. However, at the level of service planning and decision‐making, there is less evidence of a person‐centred approach. Participants reported having little involvement in the design and delivery of respite services at local or national level. The development of a respite policy in Ireland, that considers the views of respite service users, would be welcome.

Exploring the psychological impact of life‐limiting illness using the Attitude to Health Change scales: A qualitative focus group study in a hospice palliative care setting

Practitioners are often reluctant to engage in conversations that acknowledge patient's health concerns. This can affect patient and family carer psychological well-being. The Attitude to Health Change scales, adapted from the validated Adult Attitude to Grief scale, may have potential to address the psychological impact of illness and facilitate conversations in palliative care. To explore how health and social care professionals experience using the Attitude to Health Change Scales within hospice settings. Qualitative focus groups with practitioners currently using the Attitude to Health Change scales in three UK hospices. Two researchers conducted the interviews, developed the thematic framework and independently coded the transcripts using a framework analysis approach. Three focus groups (n=21 practitioners). The scale was used to assess and reassess levels of vulnerability and resilience to identify the need for support and to facilitate structured in-depth conversations. Factors that influenced scale implementation included the following: practitioner personal comfort and training; patient and family carer willingness to engage with the scales and having a practitioner "champion" within the organisation. This exploratory work has identified the potential value of the scales for assessment and to facilitate conversations. Further research needs to incorporate the views of patients and family carers.

Benefits and risks of sharing genetic data for research purposes: the views of patients and carers

Abstract Background Public health genomics research has the potential to predict, prevent, diagnose and treat a large number of diseases. This demands access to large genomic datasets. Understanding people's motivations for and concerns with sharing genetic data is essential to promote engagement and to develop ethical, legal and social frameworks for genomic research. This study aims to assess patients' and carers' views about the benefits and risks associated with genetic data sharing for research purposes. Methods A cross-sectional study was performed with 157 patients and 487 carers (participation rate=89.3%) followed at two rare genetic diseases reference centres in Portugal (June 2019-January 2020). Participants selected, from five options, the two most important benefits and risks associated with sharing genetic data for research. Data were analysed using descriptive and inferential statistics. Results Potential to discover a cure for untreatable diseases was viewed as the most relevant benefit by patients and carers (87%), followed by the possibility to develop new drugs and treatments (46%). Lack of security and control regarding access to information was the most reported risk (63%), particularly by patients, younger participants, students and those less willing to share their data (p < 0.05). The possibility of extracting information that exceeds the research objectives was the second most reported risk (58%), specifically by carers, participants with high education, employed, with upper white-collar occupations and who were involved in patient organizations (p < 0.05). Conclusions Young patients' concerns about data security and control may reduce their willingness to share genetic data. Socially advantaged carers worry about their data being used for purposes other than research. Assessing patients' and carers' views about genetic data sharing is important to meet their expectations for data protection and use and to guarantee respect for their rights. Key messages Patients and carers expect genetic research to contribute for discovering a cure for untreatable diseases and for developing new drugs and treatments. Patients are concerned about genetic data security and control and carers are worried about their genetic data being used for purposes other than research.

Using participatory methods to evaluate the impacts of an early intervention programme on children and young people (CYP)

The child’s voice is often excluded in child and family service programme evaluations, with research traditionally favouring the views of parents, carers and other adults. Evaluations that do not provide adequate opportunities for children and young people (CYP) to be involved potentially risk misunderstanding wider programme impacts and minimising CYP-specific outcomes. CareSouth has piloted an evaluation utilising body-mapping to collect programme feedback from CYP to provide valuable insights into perceived outcomes in areas of social connection, cognitive skills and development of positive personal identity. This article will share insights and lessons CareSouth encountered during the evaluation, the methods used to ensure ethical evaluation and the lessons for other child and family service practitioners looking to extend meaningful consultation with CYP to ensure greater understanding of holistic programme impacts.

The views of carers, people living with dementia and healthcare practitioners about the value of online information and peer support

This article reports on research into the development of a website (Caregiverspro-MMD) intended for carers and people living with dementia. Carers, people living with dementia and healthcare practitioners were invited to explore a prototype of the website. Information was sought about: whether they thought the website would be useful; the functions and resources they would require; and their views about using an online resource. Interviews and focus groups identified support for engaging with peers online and accessing information. Concerns about online safety and the tone of websites were also indicated. Support for learning was also highlighted as a need for some.

Re: 'I've Never Drunk Very Much Water and I Still Don't, and I See no Reason to do so': A Qualitative Study of the Views of Community-Dwelling Older People and Carers on Hydration in Later Life.

Re: 'I've Never Drunk Very Much Water and I Still Don't, and I See no Reason to do so': A Qualitative Study of the Views of Community-Dwelling Older People and Carers on Hydration in Later Life.

Factors associated with overall satisfaction with care at the end-of-life: Caregiver voices in New Zealand.

In New Zealand, as in other industrialised societies, an ageing population has led to an increased need for palliative care services. A cross-sectional postal survey of bereaved carers was conducted in order to describe both bereaved carer experience of existing services in the last 3 months of life, and to identify factors associated with overall satisfaction with care. A self-complete questionnaire, using a modified version of the Views of Informal Carers - Evaluation of Services (VOICES) instrument was sent to 4,778 bereaved carers for registered deceased adult (>18yrs) patients in one district health board (DHB) for the period between November 2015 and December 2016. Eight hundred and twenty-six completed questionnaires were returned (response rate=21%). The majority of respondents (83.8%) rated their overall satisfaction with care (taking all care during the last 3 months into account), as high. However, satisfaction varied by care setting. Overall satisfaction with care in hospice was significantly higher compared to other settings. Additionally, patients who died in hospice were more likely to be diagnosed with cancer and under 65years of age. The factors associated with overall satisfaction with care in the last 2 days of life were: caregiver perceptions of treatment with dignity and respect; adequate privacy; sufficient pain relief and decisions in line with the patient's wishes. A more in-depth exploration is required to understand the quality of, and satisfaction with, care in different settings as well as the factors that contribute to high/low satisfaction with care at the end-of-life.

Priorities for service improvement in personality disorder in Australia: Perspectives of consumers, carers and clinicians.

Improvements to service provision for personality disorder has been predominately explored through the perspectives of clinicians, with limited understanding of the views of consumers and carers. The aim of the present study was to understand the priorities for service improvement through multiple perspectives. Twelve roundtables, with a total of 53 consumers, clinicians and carers, discussed how organizations could improve service provision for people with personality disorder and completed a questionnaire on current and optimal service provision. Inductive thematic analysis was used to identify the priorities for service improvement, and we aimed to identify differences between what participants currently receive and what they believe to be optimal. Four priorities were identified: (1) increasing consumer, carer and peer involvement in care, (2) re-orienting approaches to service provision, (3) improving access and accessibility of treatment and (4) building the capacity of services. Participants were more likely to receive individual or group treatment alone, yet believed combined individual and group treatment to be optimal. Significantly, more participants believed that long-term treatment was optimal. A shift in focus from establishing a consistent approach to servicing, to focusing on holistic care that involves consumers and carers in care, is required. © 2020 The Authors Personality and Mental Health Published by John Wiley & Sons Ltd.

People with dementia and carers online discussing surveillance

PurposeThis paper aims to interrogate online comments from consumers with dementia and family carers on surveillance technology products used by or for people with dementia.Design/methodology/approachA naturalistic, observational study of qualitative posts (N = 120) by people with dementia (n = 7) and family carers (n = 38) to discussion threads on surveillance technology (ST), hosted by an online dementia support forum in the Netherlands. Kozinet’s (2002) typology was used to describe respondent characteristics, and comments on features of ST products were analysed within a pre-existing framework.FindingsForum users were mainly “tourists” interested in ST, with some “insiders” interested in sharing experiences of ST use. They expressed a lack of trust in information from marketers and providers to the experience of being provided with poor information. Consumer-to-consumer comments on products triangulated with previous face-to-face qualitative studies. Carers prioritised “peace of mind” through location monitoring. In contrast, people with dementia prioritised user-friendliness (simple, with capability and compatible with daily routines).Practical implicationsUsing online discussions of ST products provides a rapid approach to understanding current consumer needs and preferences in the ever-changing world of technology.Originality/valueNo previous study is known to have explored the views of carers and people with dementia in online discussions about ST.

Experiences and views of patients, carers and healthcare professionals on using modems in domiciliary non-invasive ventilation (NIV): a qualitative study

BackgroundAdvances in technology means that domiciliary non-invasive ventilation (NIV) devices can be remotely monitored via modems in patients’ homes. Possible benefits and challenges of modem technology have yet to be...