Carers Face Research Articles

Enabling better carer involvement: A qualitative evaluation of the involvement service belonging to a carers organisation in the United Kingdom

Background: Globally, unpaid carers face economic and societal pressures. Unpaid carers’ support is valued at £132 billion a year in the United Kingdom (UK) alone. However, this care comes at a high cost for the carers themselves. Carers providing round the clock care are more than twice as likely to be in bad health than non-carers. These carers are therefore proportionately more likely to need statutory services such as health care provision. It is critical that carers are better supported to be involved in the shaping, delivery and evaluation of the services they receive. Unfortunately, qualitative evidence on how carer organisations can do this better is scarce. Methods: Working collaboratively with a community-based carers organization, we undertook a qualitative study. Purposive sampling was used to recruit 23 participants. Online, semi-structured, one-to-one interviews were conducted with carers, community organization staff and stakeholders to ascertain their experience and views on the involvement service. Results: Firstly, there are a range of benefits resulting from the involvement service. The carers see the service as an opportunity to connect with other carers and share their views and ideas. Secondly, staff and service providers also reported how involvement gave a platform for carers and was of value in helping them shape needs-led services. Thirdly, we found that barriers to good involvement include the lack of a clearly understood, shared definition of involvement as well as the lack of a diverse pool of carer representatives available for involvement activities. Conclusion: The findings from our study provide important insights into how carers, staff and service stakeholders view barriers and enablers to good involvement. The findings will be of interest to a range of community-based organizations interested in further involving members of their community in shaping the services they receive.

The development, feasibility and acceptability of Empower-Autism: A new psychoeducational and psychotherapeutic programme for caregivers of children recently diagnosed with autism.

What is already known about the topic?Parents and carers face many challenges following their child's autism diagnosis. They often look for information, and social and emotional support. There has been relatively little research into how best to provide this support and this means that there is no evidence to guide the delivery of services. Studies have suggested that an approach called Acceptance and Commitment Therapy can help parents and carers with their adjustment and emotional wellbeing.What does this article add?This article describes the development of a new group-based programme to address the diverse needs of caregivers after their child's autism diagnosis. The new programme was developed with caregivers, autistic people and professionals. It was called Empower-Autism and contained lots of information about autism and strategies to support autistic children, alongside therapeutic aspects based on Acceptance and Commitment Therapy. The programme was delivered to 29 parents/carers in three groups. Attendance at the groups was satisfactory. Both parents/carers and facilitators liked and valued the programme and found it accessible. They made suggestions for improvements. After the programme, parents and carers described improved wellbeing. They felt more positive and more connected to other people. They also described parenting their child in a more informed and sensitive way.Implications for practice, research or policyThe new programme is being tested within a large clinical trial. If there are positive results, the programme could be recommended for delivery and this would address an important gap in evidence-based practice.

Culturally adaptive healthcare for people with a learning disability from an ethnic minority background: A qualitative synthesis

AbstractBackgroundPeople with a learning disability face health inequality. Those from ethnic minority backgrounds with a learning disability face ‘double discrimination’ as members of two marginalised groups.MethodsThis codesigned review consolidated the evidence on the healthcare experiences of individuals and their carers from ethnic minority backgrounds with a learning disability. Three electronic databases were searched for UK studies from January 1990 to June 2022. Qualitative data from 28 studies were analysed using thematic framework analysis.FindingsThere was an overarching theme of ‘culture, choice and conflicts of control’, which related to the variable preferences for involvement in healthcare decisions. Cultural and individual factors impacted upon experience, with themes relating to ‘misunderstanding and mistrust’, ‘discrimination and stigma’, ‘isolation’, ‘feelings of shame and blame’, ‘burdens of care’ and ‘carer wellbeing’. Factors associated with healthcare‐seeking and care provision are described in the themes ‘triangles of care’, ‘community networks’ and ‘adaptive communication’.ConclusionsPeople from ethnic minority backgrounds with learning disability experience complex barriers which influence their healthcare experiences. Recognising and understanding discrimination can be difficult for people with a learning disability. Carers face challenges which influence their own wellbeing. Services need to be responsive to individual cultural contexts, while addressing potential conflicts of control.

Basic Conditions for Support of Young Carers in School: A Secondary Analysis of the Perspectives of Young Carers, Parents, Teachers, and Counselors.

Young carers face a variety of challenges at school. While schools can be vital places of support, the assistance they receive at school often seems selective and fails to consider the unique life situations of individual students. This paper examines the perspective of multiple actors in the student's school environment and explores how schools can develop comprehensive, sustainable support systems for young carers-systems that consider and involve as many actors as possible in the student's school environment. In a secondary analysis of two interview studies, we analyzed how young carers as well as their parents, teachers, and school counsellors perceived the school support the carers received. We then developed an integrated model that incorporates these differing perspectives. The model offers an approach for implementing low-threshold support for young carers within existing school structures in relation to their family situation and outlines conditions that can support both recognized and "invisible" young carers, as well as other students.

The landscape of inequalities in dementia across Europe: First insights from the INTERDEM taskforce.

Getting a diagnosis of dementia does not equate to equitable access to care. People with dementia and unpaid carers face many barriers to care, which can vary within, and across, different countries and cultures. With little evidence across different countries, the aim of this scoping exercise was to identify the different and similar types of inequalities in dementia across Europe, and provide recommendations for addressing these. We conducted a brief online survey with INTERDEM and INTERDEM Academy members across Europe, and with members of Alzheimer Europe's European Working Group of People with Dementia and Carers in February and March 2023. Members were asked about whether inequalities in dementia care existed within their country; if yes, to highlight three key inequalities. Responses on barriers were coded into groups, and frequencies of inequalities were calculated. Highlighted inequalities were discussed and prioritised at face-to-face and virtual consensus meetings in England, Ireland, Italy, and Poland, involving people with dementia, unpaid carers, health and social care providers, and non-profit organisations. Forty-nine academics, PhD students, people with dementia and unpaid carers from 10 countries (Belgium, Denmark, Germany, Greece, Ireland, Italy, Poland, Malta, Netherlands, UK) completed the survey. The most frequently identified inequalities focused on unawareness and lack of information, higher level system issues (i.e. lack of communication among care professionals), lack of service suitability, and stigma. Other barriers included workforce training and knowledge, financial costs, culture and language, lack of single-point-of-contact person, age, and living location/postcode lottery. There was general consensus among people living dementia and care providers of unawareness as a key barrier in different European countries, with varied priorities in Ireland depending on geographical location. These findings provide a first insight on dementia inequalities across Europe, generate cross-country learnings on how to address these inequalities in dementia, and can underpin further solution-focused research that informs policy and key decision makers to implement changes.

Craftivism as Inquiry: Holding Life’s Threads

In this article, we share insights regarding an arts-based research project where carers of people with dementia conveyed their experiences in cloth. Carers face high rates of mental ill health and burnout, while forming a largely undervalued and unrecognised workforce. Through this project, carers’ knowledge was valued and amplified using an innovative methodology – craftivism. During a series of five workshops in 2021, a small group of carers, researchers and artists gathered online to develop an exhibition of craftivist textile works. They evoked the complexity of their makers’ journeys supporting loved ones at the end of life, finding joy and meaning despite grief and isolation. Making and crafting, together, we built community and highlighted the importance of the relationships at the heart of care: holding life’s threads. This article contributes to a growing literature surrounding arts-based methods in qualitative research, advocacy, and community life, while providing another platform to share and celebrate the stories of all those involved in the project.

Designing new musical technologies for wellbeing – exploring the needs and preferences of those living with dementia

AbstractBackgroundMusic has been found to provide numerous health and wellbeing benefits for people living with dementia. It is also quite open in terms of the forms of engagement it affords, offering numerous different ways to listen, play and create. Although technology has the potential to reduce barriers that people with dementia face when attempting to engage with music, little has been designed with them in mind. This study seeks to understand: i) the needs, rewards, and barriers that people with dementia and their carers face when engaging with music in their daily lives, and ii) how any specifically designed future musical interfaces will look and react.MethodA survey using a mixture of qualitative and quantitative questions was distributed online to people living with mild cognitive impairment or dementia and to those that provide care for them. Questions asked about motivations and contexts for engagement, barriers and enabling factors, the comparative importance of various musical activities, and the technologies people living with dementia currently use and why.ResultThe main tools for listening include smartphone apps, radio, virtual assistants, and YouTube. Most participants listen to music on multiple devices, with its ease of use, accessibility, and convenience for their current listening environment frequently influencing their choice. They also presented a wide range of motivations for engaging with music, but a majority of participants agreed that “feeling like myself” is their most important motivator. Most participants thought it was very important for devices to offer choice. It should also have a simple way for them to turn it off or switch to a safe song if they hear a distressing song or it experiences signal loss.ConclusionThe findings highlight that people living with dementia have diverse individual motivations for music, and they want it to perform different functions at different times (e.g. sometimes aiding in their relaxation and sometimes connecting them with others). The findings point to fruitful future directions for technology development: i) ready‐to‐use tools that can adapt to changing interests, and ii) tools that make it easy to access choice and variety while safeguarding against distress from unwanted or unexpected events.

Designing new musical technologies for wellbeing – exploring the needs and preferences of those living with dementia

AbstractBackgroundMusic has been found to provide numerous health and wellbeing benefits for people living with dementia. It is also quite open in terms of the forms of engagement it affords, offering numerous different ways to listen, play and create. Although technology has the potential to reduce barriers that people with dementia face when attempting to engage with music, little has been designed with them in mind. This study seeks to understand: i) the needs, rewards, and barriers that people with dementia and their carers face when engaging with music in their daily lives, and ii) how any specifically designed future musical interfaces will look and react.MethodA survey using a mixture of qualitative and quantitative questions was distributed online to people living with mild cognitive impairment or dementia and to those that provide care for them. Questions asked about motivations and contexts for engagement, barriers and enabling factors, the comparative importance of various musical activities, and the technologies people living with dementia currently use and why.ResultThe main tools for listening include smartphone apps, radio, virtual assistants, and YouTube. Most participants listen to music on multiple devices, with its ease of use, accessibility, and convenience for their current listening environment frequently influencing their choice. They also presented a wide range of motivations for engaging with music, but a majority of participants agreed that “feeling like myself” is their most important motivator. Most participants thought it was very important for devices to offer choice. It should also have a simple way for them to turn it off or switch to a safe song if they hear a distressing song or it experiences signal loss.ConclusionThe findings highlight that people living with dementia have diverse individual motivations for music, and they want it to perform different functions at different times (e.g. sometimes aiding in their relaxation and sometimes connecting them with others). The findings point to fruitful future directions for technology development: i) ready‐to‐use tools that can adapt to changing interests, and ii) tools that make it easy to access choice and variety while safeguarding against distress from unwanted or unexpected events.

An implementation evaluation of the Driving and Dementia Roadmap (DDR) in Alzheimer Society organizations

AbstractBackgroundIn response to the immense challenges that people with dementia (PWD) and family/friend carers (FCs) face in the driving cessation process, we developed the Driving and Dementia Roadmap (DDR). The DDR is a web‐based resource comprised of information and tools to support PWD, FCs and healthcare providers in the decision‐making and transition to non‐driving. To understand the factors (i.e., barriers and facilitators) that influenced the DDR’s implementation in Alzheimer Society (AS) settings, we conducted an implementation evaluation.MethodThe DDR was implemented by AS staff in six organizations in four Canadian provinces. Nineteen AS staff were interviewed after a three to six month period of delivering the DDR to their clients. Participants also recorded details about each interaction involving the DDR (e.g., setting, mode and rationale). Data were examined using a thematic analysis approach guided by the Consolidated Framework for Implementation Research (CFIR), which is a meta‐theoretical framework comprised of constructs organized into five domains (e.g., user characteristics, intervention characteristics and process).ResultThe DDR was implemented mainly via individual consultations by telephone/email to FCs who expressed concern about driving issues. Main factors that facilitated the DDR’s implementation were related to the characteristics of the DDR, such as its perceived evidence strength (e.g., research‐based) and quality (e.g., variety of tools, association with reputable organizations), superiority to other resources (e.g., more in‐depth, comprehensive and user friendly) and its ease of delivery (e.g., via telephone/email with minimal instruction required by clients). AS staff characteristics’ that facilitated implementation included their enthusiastic and favorable views about the DRR’s potential to be an empowering resource that could facilitate conversations and early planning for driving cessation. Barriers to implementation included clients’ lack of computer skills as well as competing priorities for AS staff such as other projects and tasks, and attending to issues related to the COVID‐19 pandemic (e.g., isolation, caregiver burnout, staying safe).ConclusionThis study highlights how the perceived strengths of the DDR resource itself and AS staff’s favourable beliefs about the DDR facilitated its successful implementation in AS settings. Strategies to address implementation barriers include offering a print‐based version of the DDR.

Exploring the factors influencing young adult carer students’ engagement with targeted support in Higher Education.

Young adult carers (YACs) face significant barriers to both access and retention in higher education. Accurate data on the number of YACs is unavailable, due in part, to students staying ‘hidden’ because of perceived stigma and/or lack of recognition of the label ‘YAC’. This paper focusses on the premise that universities fail to reach many YACs and explores what factors impact engagement or lack thereof with targeted support. It seeks to understand what factors influence students’ interaction with targeted support and whether this aligns with universities’ approach to promoting services and their reliance on students having awareness and self-agency to seek them. Research was conducted at a metropolitan, medium-sized UK university using a mixed-methods, explanatory, sequential design. Interpretative, phenomenological analysis produced four dominant themes: identity, mental health, processes, and student experience and support. The findings indicate that self-identity plays a pivotal role in how the YAC student and the university interact with each other in relation to support. The salient identity is likely to be ‘student’ unless specific support is required, therefore for universities to identify YAC students, processes will need to be adapted to find the student rather than the student being expected to seek out support. To achieve this, a holistic, horizontal support model across the student lifecycle is recommended. Universities should aim to champion YACs to promote acceptance and understanding, use student-friendly language when promoting services to avoid alienation, and offer flexible administrative processes to ensure an improved experience for YACs at university.

Involving underrepresented groups: How unpaid carers influenced our data analysis

ObjectivesThe recent census found that five million people in England and Wales provide unpaid care. With social services struggling, unpaid carers face increasing pressure. The North West London Networked Data Lab aimed to understand unpaid carers’ needs, health issues, and care pathways through public involvement and analysis of linked datasets.
 MethodsWe used the Discover dataset containing primary, secondary, mental health, and social care data of 2.5 million North West Londoners to explore our aims. To ensure the questions asked of the data mattered locally, we interviewed five unpaid carers to understand the issues they faced. One carer worked more closely with the data analyst to define the questions. The interim results were presented to a diverse group of unpaid carers to see whether anything resonated with them, surprised them, or required further research. The group also helped develop an engaging and accessible infographic to communicate our findings.
 ResultsThe unpaid carer cohort in our dataset were, on average, older females from deprived areas, highlighting gender and socioeconomic inequities in caring responsibilities. Unpaid carers had a higher prevalence of long-term conditions before they were identified as a carer (e.g. hypertension, depression, anxiety and diabetes) and were more likely to use healthcare services than non-carers. Through speaking to unpaid carers, we learned that many hadn’t identified as a carer or mentioned it to their GP for many years. In fact, they had only had their carer status recorded after visiting their GP for an issue linked to their caring responsibilities. Our public involvement helped to highlight a major limitation of the data, particularly as men are less likely to interact with their GPs.
 ConclusionOur analysis found unpaid carers were more likely to have certain conditions and more likely to have multiple long-term conditions. Public involvement was critical in making sense of these findings and identifying policy and practice recommendations. Giving people a meaningful voice in population data research can also build public trust.

Chaplains as hosts: balancing humility and assertiveness in spiritual care

ABSTRACT Interfaith spiritual care (ISC) is a non-sectarian and open-ended spiritual therapy ubiquitously performed by healthcare chaplains. However, these carers face uncertainty in navigating the many epistemological and ethical norms involved. A theological framework is needed that guides ISC practitioners in engaging and provisioning the existential, religious, and ritual needs of diverse populations. This paper recaps the author’s doctoral work (Youngblood 2020), proposing a pastoral hospitality that opens our hearts and minds to a wider range of religious truths, even strange and uncomfortable ones. It also critiques a postcolonial notion that carers in non-Western contexts should identify primarily as humble ‘guests’ rather than ‘hosts’. Instead, the author maintains that chaplains should still sometimes imagine themselves as hosts empowering the patient. Ultimately host–guest is a dynamic relationship, not a static role. Imagining one’s pastoral ministry as alternating between the two allows the chaplain to balance humility and empathy with assertiveness and (sometimes) confrontation.

STUDENT ESSAY children and young people in a caring role

ABSTRACT The ethical issue of children and young people taking on a caring role is based around caring requiring an inappropriate level of responsibility for their age which affects their current and future wellbeing and education (Dundee Carers Centre, 2018). An ethical dilemma occurs when a choice needs to be made between two unwelcome alternatives with the impact of the dilemma still existing once a choice is made (Banks, 2012). There are multiple sides to the argument surrounding young carers, with one being that there is as much support in place for young carers as possible to ease pressure and enable them to have ‘a childhood similar to their peers’, as intended by the Carers (Scotland) Act 2016 (Dundee Carers Centre, 2021). However, the other side of this argument is that the constraints that young carers face across participation in education, social relationships, and health and wellbeing is too much for a child or young person to take on (Hamilton & Adamson, 2013). Using the reflection-on-action and reflection-in-action model by Schön (1983) I will be analyzing and reflecting on my understanding of this ethical issue after critically analyzing the different sides to this argument.

Exploring the lived experience of renal cachexia for individuals with end-stage renal disease and the interrelated experience of their carers: Study protocol.

Renal cachexia is an important consideration in the person-centred care that is needed in end-stage renal disease (ESRD). However, given that clinical guidelines relating to renal cachexia are largely absent, this is an unmet care need. To inform guidelines and future renal service planning, there is an urgency to understand individuals' experiences of renal cachexia and the interrelated experiences of the carers in their lives. We report here the protocol for an interpretative phenomenological study which will explore this lived experience. A purposive sampling strategy will recruit individuals living with ESRD who have cachexia and their carers. A maximum of 30 participants (15 per group) dependent on saturation will be recruited across two nephrology directorates, within two healthcare trusts in the United Kingdom. Individuals with renal cachexia undergoing haemodialysis will be recruited via clinical gatekeepers and their carers will subsequently be invited to participate in the study. Participants will be offered the opportunity to have a face-to-face, virtual or telephone interview. Interviews will be audio-recorded, transcribed verbatim and analysed using interpretative phenomenological analysis. NVivo, will be used for data management. Ethical approval for this study was granted by the Office for Research Ethics Committees Northern Ireland (REC Reference: 22/NI/0107). Scientific evidence tends to focus on measurable psychological, social and quality of life outcomes but there is limited research providing in-depth meaning and understanding of the views of individuals with renal disease who are experiencing renal cachexia. This information is urgently needed to better prepare healthcare providers and in turn support individuals with ESRD and their carers. This study will help healthcare providers understand what challenges individuals with ESRD, and their carers face in relation to cachexia and aims to inform future clinical practice guidelines and develop supportive interventions which recognise and respond to the needs of this population.

Views and experiences on the use of voice assistants by family and professionals supporting people with cognitive impairments.

The use of voice assistants (e.g., Amazon Alexa, Google Home) is being widely advocated as part of supporting people living with dementia at home. The development of this technology is largely driven by industry, and there is little research to determine how family carers and professionals use voice assistants with people with dementia. This paper presents the findings from further analysis of data from two studies: Study 1-a qualitative study that aimed to explore the views and expectations of family carers and professionals who use voice assistants to support people with a cognitive impairment at home, and Study 2-a qualitative enquiry aiming to identify the views and barriers on using voice assistants by family carers of people with dementia and professionals, together with a pilot case study evaluating a prototype that addresses barriers identified during the enquiry, entitled IntraVox. Based on processing of smart home sensor data, IntraVox uses a personalised human voice to send prompts and reminders to end-users to conduct daily life activities and to activate smart home processes using voice assistants. The results of the qualitative studies indicate that family carers and professionals use voice assistants in their caring role for home automation, skills maintenance and development, prompts and reminders, behaviour and environment monitoring, and for leisure and social interaction support. The findings also show that family carers and professionals have specific challenges that need to be overcome for them to realise the benefits that may be gained through the use of voice assistants within technology enabled care. The pilot case study also provided a useful demonstration that interoperability can be achieved to enable exchanges between IntraVox and voice assistants, with the aim of providing customised and personalised technological solutions that address some of the barriers that people with dementia and their carers face in the use of this technology.

Oral Self-Mutilation in Lesch-Nyhan Patients: A Cross-Sectional Study.

Lesch–Nyhan syndrome (LNS) is a rare genetic condition resulting from an inherited disorder of purine metabolism. It is characterized by the lack of one enzyme, hypoxanthine-guanine phos-phoribosyltransferase (HGPRT), which is responsible for purine salvage. The main manifestations of this syndrome are hyperuricaemia, reduction in cognitive abilities, self-aggressive behavior, choreoathetosis, spasticity, and retarded development. The aim of the study was to investigate the means of treatment and efficacy of prevention of oral self-injury behavior (SIB) in patients with LNS. Information regarding the type and treatment of oral SIB in 19 LSN Italian patients (mean age 23.3 years) was gathered via a structured telephone interview of their parents. A total of 84% of the patients showed some form of self-injury behavior; the first form to manifest itself was finger biting (37%), followed by lip biting (25%), and then tongue biting (18%). Furthermore, 74% of cases featured oral SIB, and tooth extraction was found to be the most frequent form of treatment practiced (71%). This study has revealed the great difficulty parents and carers face in managing forms of oral SIB; dental extraction was the most common choice, despite its invasive nature and far-reaching consequences in regard to the psychosocial status of the patients.

In old people's homes, carers face Covid-19

Many ethical issues were raised by the pandemic crisis. Caregivers were under great pressure and stress in their work in residential care facilities for the dependent elderly (Ehpad), both with residents and their families. The implementation of ethical support tools was only gradual, particularly for the management of residents' deaths. Anxiety has set in among all the people working or living in the Ehpad, blurring interpersonal relations and increasing tensions and professional exhaustion.

What Do Patients and Their Carers Do to Support the Safety of Cancer Treatment and Care? A Scoping Review.

Cancer patients and their carers face a multitude of challenges in the treatment journey; the full scope of how they are involved in promoting safety and supporting resilient healthcare is not known. The study aimed to undertake a scoping review to explore, document, and understand existing research, which explores what cancer patients and their carers do to support the safety of their treatment and care. This scoping review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines. Five online databases were searched from 2000 to 2021 to identify primary literature exploring perspectives on patient and caregiver involvement in maintaining their safety during cancer care. Narrative synthesis was then conducted on the included literature. Of the 1582 results generated from the initial search, 16 studies were included in the review. Most consisted of qualitative semistructured interviews with patients, as well as carers and healthcare professionals (HCP). Four narrative themes were identified: patient perception of safety and their involvement; patients take charge of their own care and well-being; safety as a dynamic collective responsibility; and carers are an undersupported asset. Patients and their carers involve themselves in a variety of behaviors in physical care, well-being, communication, and care coordination to ensure safety and support system resilience. This review adds a novel perspective on cancer patient and caregiver involvement in supporting resilient healthcare. Patients and their carers play an important role in promoting safe cancer care and healthcare system resilience. Further research is recommended to realize the full extent of the system gaps encountered and mediated by patients and their carers.

A qualitative exploration of the physical and psychological wellbeing of family carers of veterans in Australia.

Family carers of veterans have a tendency not to seek support for their own wellbeing concerns. Understanding the barriers and enablers that family carers face in attending to their own wellbeing and in their caring role generally, is key to supporting family carers of veterans. This qualitative study sought to explore family carers’ experiences and perceptions of their caring role, using semi-structured interviews. Questions were designed to capture concepts related to the barriers and enablers family carers face in attending to their own wellbeing. Twenty-two family carers participated in interviews. Thematic analysis facilitated the identification of key themes including the impact of the caring role; a perceived lack of recognition or appreciation of the caring role; expressed preferences for support; and consideration of the family unit. Findings suggest a need for accessible and multi-faceted support services for family carers of veterans, that target the drivers of physical and psychological wellbeing.

Attending to the needs of young carers in a GP consultation

Young carers face many difficulties on a daily basis in areas such as physical health, mental health and education. By being aware of what support is available to them, we can make a positive impact on a child’s life and lessen the burden of responsibility at such a young age. It is our duty as healthcare professionals to recognise these patients, support them and allow them to flourish.