Majority Of Carers Research Articles

Persisting gaps in dementia carer wellbeing and education: A qualitative exploration of dementia carer experiences.

To explore the emotional wellbeing of dementia carers in the lead up to and during transition of a person living with dementia to a residential aged care facility. An interpretative qualitative study. Semi-structured interviews were conducted with informal carers of person living with dementia between February and June 2023. Data were analysed using an inductive thematic approach and resulted in three themes. The majority of carers were adult children (n = 19) and six were wives. Carers lived across metropolitan (n = 20) and regional settings (n = 5) in the most populous state of Australia. Three themes were identified which were attributed to different aspects of the carer role: (1) Carer emotional journey as dementia progresses - impacted by knowledge and lack of support; (2) Questioning decision making-underpinned by knowledge and confidence; and (3) Challenges in re-establishing identity - impacted by ongoing concerns. As dementia progresses carers of person living with dementia consistently reported gaps in knowledge including how to access support. Specifically, this study identified the need for more to be done to help carers to develop the skills needed for their role, including participation in care planning and identifying care preferences for the future. Nurses can play a key role in promoting referral to services that support carers. Findings offer practical solutions to ameliorate carer stress and promote shared decision making. This research was guided by the Consolidated Criteria for Reporting Qualitative Research.

Involving carer advisors in evidence synthesis to improve carers' mental health during end-of-life home care: co-production during COVID-19 remote working.

Family carers play a central role in supporting people at the end of life, but often suffer detrimental impacts on their own mental health as a result. This project conducted evidence synthesis of research into factors that may affect carers' mental health to help identify ways of maintaining their mental health. It worked closely with a carer Review Advisory Panel to help ensure the findings made sense and were communicated meaningfully from the carers' perspective. To present: (1) principles and components that facilitated successful patient and public involvement in an evidence synthesis project to help inform patient and public involvement in similar projects; (2) recommendations for carer support that were instigated and produced by the Review Advisory Panel. Nine Review Advisory Panel meetings including four to five carers, a lay Chair and three researchers were held. Solid 'groundwork' was invested in recruitment and relationship-building prior to meetings, and it was ensured that there was agreement of how to work together and clarification of expectations at the first meeting. Key meeting principles were: having a majority of carers, and a Chair with both carer and patient and public involvement experience, to ensure carer voices remained at the fore substantial researcher representation, including the project lead, to highlight the value placed on Review Advisory Panel meetings flexibility to follow carers' agendas, enabling 'space to talk' and 'space to change' appropriate and prompt carer payment, again emphasising patient and public involvement value to the project. Added general principles were: ongoing training, ample funded time for Review Advisory Panel preparation and ongoing communication outside meetings. COVID moved all meetings online after the first meeting, but the principles were maintained. The project saw an evolution from patient and public involvement consultation to co-production. The main patient and public involvement output was recommendations for supporting carers based on project findings, instigated and produced by the Review Advisory Panel. Five carers (including the Chair) and six researchers responded to questions by e-mail. Analysis by one researcher, aided by two other researchers, was then reviewed by all participants and revised. Both carers and researchers felt the components that made the patient and public involvement work were: (1) a shared sense of purpose of and gains from the Review Advisory Panel; (2) personal gains; (3) mutual commitment and respect; and (4) bridging between academic and lay perspectives, through investment in training, ensuring carers were able to meaningfully comment, and continuous negotiation and compromise. Challenges were that the COVID-induced move from face-to-face to online meetings reduced informality, flexibility, personal connection and non-verbal communication. However, earlier groundwork facilitated group resilience to these challenges. Patient and public involvement representation on the wider Research Management Group proved less successful, flagging the importance of negotiating and defining patient and public involvement roles at all project levels. The patient and public involvement principles employed, including meeting composition and chairing, and flexibility to follow carers' agendas, appeared to facilitate the evolution from consultation to co-production of carer recommendations, but require further testing. Preconditions for successful remote working should be further investigated, as the different advantages of face-to-face and virtual meetings may be combined through hybrid working. The iterative and responsive working required for genuine co-production may require more flexible patient and public involvement funding models. This study is registered as PROSPERO registration 2019 CRD42019130279 at https://www.crd.york.ac.uk/prospero/. This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (grant 18/01/01) and will be published in full in Health and Social Care Delivery Research. See the NIHR Journals Library website for further project information.

Determinants of the need for respite according to the characteristics of informal carers of elderly people at home: results from the 2015 French national survey

BackgroundThe demographic and social changes associated with population aging and the increasing incidence of chronic diseases underscore the importance of the role of informal carers. The number of informal carers is increasing and negative consequences associated with providing care, such as burnout, are known. However the influence of socioeconomic and psychological factors on the need for respite have not been well characterized to date. Informal care represents an essential component of health care systems and long-term care. The purpose of this study was to shed light on how the characteristics of informal carers affect the need for respite.MethodsWe used data from a nationally representative survey, Capacités Aides et Resources des Seniors (CARE - ménage), collected in 2015 by the National Institute for Statistics and Economic Studies (INSEE) and the Directorate for Research, Studies, Assessment and Statistics (DREES). The determinants of the need for respite among the characteristics of informal caregivers were explored using a probit model. To handle missing data, sensitivity analyses were performed using multiple imputations.ResultsOur study included N = 4033 dyads of informal carers and care recipients. The mean age was 61 for carers. The majority of carers were female, married, the child of the care recipient. Almost 27% reported a need for respite. A worse health status, feeling of loneliness, having a lack of time for oneself and needing to provide more than 30 h of care per month very significantly increased the need for respite irrespective of whether or not the carer lived with the care recipient (p < 0.01). Providing care to other persons was likely to induce a greater need for respite (p < 0.01). Cohabitation of the informal carer and the care recipient was likely to increase the need for respite (p < 0.05). Conversely, however, being closely acquainted with the care recipient showed a reduced need for respite in comparison with that of carers who are married to their care recipient (p < 0.05).ConclusionsThese findings provide useful information for policymakers, physicians and other health professionals for reducing carers’ risk of exhaustion and burnout and for referring carers to the relevant service, e.g. psychological intervention, respite care support, training support and education support.

The monetary valuation of informal care to cancer decedents at end-of-life: Evidence from a national census survey

Background: Carers’ end-of-life caregiving greatly benefits society but little is known about the monetary value of this care. Aim: Within an end-of-life cancer setting: (1) to assess the feasibility and content validity of a post-bereavement measure of hours of care; and (2) to obtain a monetary value of this informal care and identify variation in this value among sub-groups. Design and setting: A census based cross-sectional survey of all cancer deaths from a 2-week period in England collected detailed data on caregiving activity (10 caregiving tasks and the time spent on each). We descriptively analyse the information carers provided in ‘other’ tasks to inform content validity. We assigned a monetary value of caregiving via the proxy good method and examined variation in the value via regression analysis. Results: The majority of carers (89.9%) were able to complete the detailed questions about hours and tasks. Only 153 carers reported engaging in ‘other’ tasks. The monetary value of caregiving at end-of-life was £948.86 per week with social and emotional support and symptom management tasks representing the largest proportion of this monetary valuation. Time of recall did not substantially relate to variation in the monetary value, whereas there was a stronger association for the relationship between the carer and recipient, carer gender and recipient daily living restrictions. Conclusion: The monetary valuation we produce for carers’ work is substantial, for example the weekly UK Carers’ Allowance only amounts to 7% of our estimated value of £948.86 per week. Our research provides further information on subgroup variation, and a valid carer time instrument and method to inform economic evaluation and policy.

A survey of the prevalence of modifiable health risk behaviours among carers of people with a mental illness

BackgroundFamily carers provide significant support to people with a mental illness; yet may experience poor mental and physical health themselves. Among limited research addressing the physical health of carers, studies of carers of people with dementia and young people with psychosis suggest increased risk of chronic diseases in conjunction with higher levels of potentially modifiable lifestyle risk behaviours. This exploratory study, conducted with carers of people with various mental illnesses, aimed to determine: carer prevalence of health risk behaviours (inadequate fruit and vegetable consumption, inadequate physical activity, harmful alcohol consumption, and tobacco smoking); interest in changing ‘at risk’ behaviours; and potential associations of socio-demographic characteristics with risk status and interest in change.MethodsA cross-sectional survey was conducted among family carers of people with a mental illness (N = 144) residing in New South Wales, Australia. Analyses explored risk behaviour prevalence and interest in change, and associations with socio-demographic variables.ResultsInadequate fruit and vegetable consumption was most prevalent (74.8%), followed by engaging in inadequate amounts of physical activity (57.6%); harmful alcohol consumption (36.3%) and smoking (11.8%). The majority of carers were interested in improving ‘at risk’ behaviours (56.3–89.2%), with the exception of alcohol consumption (41.5%). Previously or never married participants were more likely to consume inadequate amounts of fruits and/or vegetables compared to those married or cohabiting (Odds Ratio [OR]: 4.1, 95% Confidence Interval [CI]: 1.3–12.9, p = .02). Carers in the workforce were more likely to be engaging in inadequate physical activity (OR: 2.6, 95% CI: 1.2–5.7, p = .02); and male participants were more likely to engage in harmful alcohol consumption (OR: 2.9, 95% CI: 1.1–7.9, p = .03). Working carers were approximately five times more likely to report interest in improving their alcohol consumption (OR: 5.1, 95% CI: 1.3–20.5, p = .02) compared to those not currently in the workforce.ConclusionsResults suggest high engagement in health risk behaviours among carers of people with a mental illness, particularly with regards to harmful alcohol consumption. Findings suggest a need to develop and implement chronic disease prevention strategies. Further research with larger representative samples is needed to confirm findings.

Development of a Smartphone App for Informal Carers of People With Cancer: Processes and Learnings.

BackgroundThere are few support systems available to informal carers who provide care to cancer patients. Smartphone apps have the capacity to reach large audiences and can provide information and support at a time convenient to carers.ObjectiveThe aim of this study was to design a smartphone app prototype for carers of adults with cancer.MethodsA multiple-method design was used to develop a smartphone app. Current and past carers of people with any type of cancer were recruited from a public hospital, a private hospital, and a carer organization, who participated in either a focus group or phone interview. Carers answered questions about items to include in an app to address supportive care needs identified. Using carers’ feedback, a smartphone app was designed and tested.Beta testing was conducted using a convenience sample of participants who completed scenarios to inform the app’s design, functionality, and usability. Scenarios were timed and marked as complete or incomplete. Participants completed a questionnaire about the usability of the app. Beta testing occurred in 2 stages—a paper-based version of the app and an app-based test using the participants’ preferred device. Alpha testing was completed internally to ensure the functionality of the app. Data were collected between May 2016 and August 2017.ResultsA total of 33 carers participated in phone interviews and 12 in focus groups; their average age was 55 (SD 14) years, and 60% (27/45) were female. The majority of carers (76%, 25/33) had a positive attitude toward using smartphone apps. Carers noted that smartphone technology might improve their ability to seek information and support in managing their own health as well as the care needs of the person with cancer. Carers requested a variety of information and resources to be included in the app. Paper-based testing included the following: participants (N=10) were aged above 30 years (30%, 3/10), 30 to 49 years (30%, 3/10), and 50 years or above (40%, 4/10), and 60% (6/10) were male. Participants found the app user-friendly and pleasing in appearance.App-based testing included the following: participants (N=10) were aged above 30 years (20%, 2/10), 30 to 49 years (30%, 3/10), and 50 years or above (50%, 5/10), and 50% (5/10) were male. Participants reported the app to be user-friendly and easy to navigate. The majority (60%, 6/10) of participants were unable to create a shortcut icon to add the app to the home screen of their phone.ConclusionsCarers highlighted the needed information and support to assist them during the caring period; they also reported having a positive attitude toward smartphone apps. The Carer Guide App is currently undergoing a pilot study to further test usability among carers of people with 1 cancer type.

Care‐giving by people with psychotic disorders in the second Australian prevalence study of psychosis

Increasing numbers of people living with psychosis are providing care for others, although the associated benefits and impacts are poorly understood. This innovative quantitative study investigated this life role using a population-based framework aiming to compare the mental health and functioning of those providing care to and/or receiving care from others. Care-giving provided by people with psychosis was examined using data from the second Australian prevalence survey of psychosis. This epidemiologically based sample (n=1,822) was divided into four subgroups based on providing and/or receiving care from others. Independent functioning, cognitive functioning, social functioning, social connection and mental health were compared between the four subgroups. One in seven participants were providing care to others. The majority of carers were female and half were living with the care recipients. Caregivers were more likely to experience better illness course and were more commonly diagnosed with bipolar disorder. Almost one-third of caregivers reported that caring adversely affected their lives a great deal. Functioning and social connection were better in caregivers compared to non-caregivers, although cognitive functioning did not differ. People with psychosis who were neither providing nor receiving care were more likely to be single and perceive less warmth in their relationships. As expected, those only in receipt of care were living with greater disability and poorer illness course. It is relatively common to encounter people with psychosis who provide care to others in clinical settings, and women in particular combine care-giving with multiple other roles. Despite most experiencing some negative emotional impact, care-giving is associated with enhanced social relationships which may provide meaning and purpose for recovery. Care-giving roles should be addressed in recovery and care planning so as to provide people with psychosis with adequate information and support to fulfil these potentially important life roles.

Caregiving, Employment and Social Isolation: Challenges for Rural Carers in Australia.

Australia has one of the world’s highest life expectancy rates, and there is a rapidly growing need for informal caregivers to support individuals who are ageing, have chronic illness or a lifelong disability. These informal carers themselves face numerous physical and psychological stressors in attempting to balance the provision of care with their personal life, their work commitments and family responsibilities. However, little is known about the specific challenges facing rural carers and the barriers that limit their capacity to provide ongoing support. A cross-sectional survey composed of open-ended responses and demographic/socioeconomic measures used routinely by the Australian Bureau of Statistics (ABS) and the Australian Institute of Health & Welfare (AIHW) was used with a cohort of 225 rurally-based carers within New South Wales, Australia. Demographic questions specified the respondents’ age, gender, employment, caregiving status, condition of and relationship to the care recipient, postcode, residency status, and distance and frequency travelled to provide care. Open-ended comments sections were provided to allow participants to describe any issues and problems associated with caregiving including employment, travel, residency, carer support groups and any other general information. The results show that most rural carers were middle-aged women supporting a spouse or a child. Unpredictability associated with providing care exacerbated demands on carers’ time, with many reporting significant employment consequences associated with inflexibility and limited job options in rural locations. Specific issues associated with travel requirements to assist with care were reported, as were the impacts of care provision on the respondents’ own personal health. The majority of carers were aware of the social supports available in their local rural community, but did not access them, leaving the carers vulnerable to marginalisation. Problems associated with employment were noted as resulting in financial pressures and associated personal stress and anxiety for the caregivers. While this issue is not necessarily limited to rural areas, it would appear that the lack of opportunity and flexibility evident in rural areas would exacerbate this problem for non-metropolitan residents. The participants also identified specific barriers to the provision of care in rural areas, including the significant impact of travel. Access to support services, such as carer groups, were rarely accessed due to a mix of factors including inaccessibility, poor timing and a lack of anonymity. Financially, there was considerable evidence of hardship, and there is an urgent need for a comprehensive review of government and community-based support to better meet the needs of rural carers.

Establishing an informal mutual support group for carers of mentally Ill Patients: An exploratory survey from Nigeria

Background/Objectives: There are few, if any, support groups in Nigeria serving the needs of carers of mentally ill persons. The purpose of this study was to assess the need for a support group among carers of outpatients at a neuropsychiatric hospital in southern Nigeria. Materials and Methods: This study was a cross-sectional one involving 120 respondents who had been primary carers for at least 6 months. Carers completed a sociodemographic questionnaire and a 25-item carer survey questionnaire. Results: Responses from 106 participants were analyzed. The majority of carers were female (n = 60, 56%) and 60.3% were aged 31–60 years. Ninety-four (88.6%) participants reported some degree of stress in caring for the care recipient. Eighty-five participants (80.2%) reported a need for a support service, whereas 84 (79.2%) were interested in joining a group that would enhance their caring role. A carer being female and a subjective need for some form of support were significantly associated with interest in joining a carer group (P

The BREATHE Project, a mobile application, video-monitoring system in family homes as an aid to the caring role: Needs, acceptability and concerns of informal carers.

IntroductionFamily carers provide 80% of care to older people in Europe. Our aim was to explore the needs and acceptability among informal carers, of a live video home monitoring system.MethodsA descriptive qualitative design was implemented with nine interviewees and a focus group of five informal carers in Ireland in 2014. A thematic analysis of the data was conducted.ResultsTen hours of data were recorded. Three themes emerged: routine, risk, and acceptance. Although all assisted persons had a routine, carers not living in the home stated that cameras would assist with less tangible concerns such as nutrition and loneliness. Carers were interested in monitoring risks in specific situations rather than general monitoring. The majority of carers, while expressing concerns about privacy, accepted camera technology for monitoring emergencies and, in-spite of concerns, favoured a real video view. Acceptance in non-emergencies was mixed and concerns about the privacy of the assisted person were expressed.DiscussionWhile video monitoring is contentious, informal carers did express a willingness for real video-footage monitoring under strict conditions that addressed specific needs.ConclusionThe challenge for technology is to address these needs while maintaining personal dignity.

Carer perception of palliative care service at Provincial General Hospital, Ratnapura

Introduction: Palliative care improves quality of care for patients with life threatening illnesses and their families. It is common for families and, less often, friends to willingly take on the role of informal carer, even though this is often at considerable psychological, physical, social, and financial cost to themselves. Objectives: To describe carer perception towards the Palliative Care Service in Provincial General Hospital, Ratnapura. Methods: Palliative care services were provided at the Hospital for 172 patients from June 2014 to August 2016. We conducted a qualitative study to understand carer perceptions towards this new service. Semi-structured telephone interviews were conducted using qualitative research methods among 22 carers of patients who have obtained this service for over 3 months. These interviews were conducted with the aid of a preformed interviewer guide based on themes, satisfaction towards palliative care services, benefits received through the service and difficulties faced in caring for the ill person. All interviews were transcribed and analysed qualitatively using open explorative thematic coding. Results: Mean age of the carers was 44.9 years (SD 11.1), 63.6% (n=14) were females, majority (50%) were educated up to O/L, duration of care giving in the majority (50%) was 6-12 months, majority of the care givers were a child of the patient (50%). Mean age of patients was 63 years (SD 11), majority had malignancies (68.1%, n=15), and approximately half had 1-2 comorbidities. Majority stated that the palliative care service listened to and understood the needs of the patients, that adequate information and education was Opportunity was provided to share our views and worries, and talk about our roles as carers, and support was provided. Majority were highly satisfied with the service. Benefits obtained through the service were, patients could be cared for in their own homes with family members, and patients had comfortable and peaceful death. Special advice and guidance provided was beneficial to improve the physical and psychological state of patients and carers, such as pain relief, improved sleep, appetite and feeding. Carers were able to understand the disease prognosis and pre-plan to fulfil patient expectations. Some patients also received assistive devices through the service which greatly benefitted them. The service was also able to avoid frequent hospital admissions, arrange hospice care when needed, and arranged financial assistance. Difficulties faced in caring for the patient included loss of job and occupation, financial difficulties, hardships in transporting patients from home to hospital, having to travel long distances, poor support from some family members in caring for the patient which increased carer burden, and children’s schooling and education being adversely affected. Conclusions: The majority of carers were satisfied with the service provided and perceived benefit from the Palliative Care Service provided by Provincial General Hospital, Ratnapura.

Smoking Cessation Care for People with a Mental Illness: Family Carer Expectations of Health and Community Services

Introduction: Smoking prevalence remains high among people with a mental illness, contributing to higher levels of morbidity and mortality. Health and community services are an opportune setting for the provision of smoking cessation care. Although family carers are acknowledged to play a critical role in supporting the care and assistance provided by such services to people with a mental illness, their expectations regarding the delivery of smoking cessation care have not been examined.Aims: To explore family carer expectations of smoking cessation care provision by four types of health services, to clients with a mental illness, and factors associated with expectations.Methods: A cross-sectional survey was conducted with carers of a person with a mental illness residing in New South Wales, Australia. Carers were surveyed regarding their expectations of smoking cessation care provision from four types of health services. Possible associations between carer expectation of smoking cessation care provision and socio-demographic and attitudinal variables were explored.Results: Of 144 carers, the majority of carers considered that smoking cessation care should be provided by: mental health hospitals (71.4%), community mental health services (78.0%), general practice (82.7%), and non-government organisations (56.6%). The factor most consistently related to expectation of care was a belief that smoking cessation could positively impact mental health.Conclusions: The majority of carers expected smoking cessation treatment to be provided by all services catering for people with a mental illness, reinforcing the appropriateness for such services to provide smoking cessation care for clients in an effective and systematic manner.

Balancing satisfaction and stress: carer burden among White and British Asian Indian carers of stroke survivors

ABSTRACTObjectives: This paper presents the findings of a qualitative study exploring White and British Indian informal stroke carers’ experiences of caring, factors contributing to their stress, and strategies used to overcome stress.Design: A qualitative approach involving in-depth interviews was used to explore informal carers’ experiences of caring for stroke survivors and the stress of caring at one and three to six months from the onset of stroke. Interviewers bilingual in English and Gujarati or Punjabi conducted interviews with carers. Socio-demographic data of carers and stroke survivors were collected at one, and three to six months by dedicated stroke research nurses.Results: A total of 37 interviews with carers caring for stroke survivors with a wide range of physical and mental impairments were completed. A majority of carers had assumed the task of caring within a few weeks of the stroke. Irrespective of ethnicity, carers’ emotional and physical well-being was undermined by the uncertainty and unpredictability of caring for stroke survivors, and meeting their expectations and needs. The strain of managing social obligations to care was common to all carers irrespective of gender and ethnicity, but the higher levels of anxiety and depression reported by Indian British female carers appeared to stem from the carers’ pre-existing physical ailments, their cultural and religious beliefs, and household arrangements. Carers’ strain in extended households was exacerbated by the additional responsibility of caring for other dependent relatives.Conclusion: Since the role of carers is clearly indispensable in the successful rehabilitation of survivors, it is vital to ensure that their well-being is not undermined by a lack of information and training, and that their need for professional support is prioritised.

SERVICE EVALUATION OF A CYSTIC FIBROSIS HOME INTRAVENOUS ANTIBIOTIC SERVICE PROVIDED BY A NHS FOUNDATION TRUST

AimTo evaluate carers' satisfaction with the current service for home reconstitution and administration of intravenous (IV) antibiotics to cystic fibrosis (CF) patients and identify ways of improving this service to...

Looking after the mouth – Evaluation of a pilot for a new approach to training care home carers in Kent, Surrey and Sussex

Objective This pilot study aimed to produce and evaluate training resources and training in oral health care, including oral hygiene, for carers in care homes in Surrey and Medway.Methods During two training days, for carers from these homes, short, interactive presentations were given on a range of topics relevant to oral health care and oral hygiene of older people, followed by practical training. Prior to any training all attendees completed a 39 question questionnaire to establish their baseline knowledge of oral health and hygiene. At the end of the training day they completed an evaluation form. Fourteen weeks later, they were visited at their place of work and completed the same questionnaire again. Differences in responses between baseline and after 14 weeks were statistically tested using the chi-squared test.Results Sixty-six carers attended the training sessions and 44 were followed up 14 weeks later. The results showed an improvement in carer knowledge at follow up. The majority of carers (36/44) spoke English as their first language. They had a mean age of 41 years, 37 were female and 7 male. They had worked as carers for a mean of 10.9 years (range 4 months-34 years). Over 90% stated that the training day fully met or exceeded their requirements and expectations.Conclusions The results indicated improvements in carer knowledge. However, the carers were atypical of carers in general, as they were self-selected and well-motivated. Nevertheless the content of the training day and the questionnaire should inform future work in this area.

Assessing the impact of a Carer Support Needs Assessment Tool (CSNAT) intervention in palliative home care: a stepped wedge cluster trial

ObjectivesTo test the impact on family carers of a Carer Support Needs Assessment Tool (CSNAT) intervention to facilitate carer-led assessment and support during end of life care.MethodMixed method, part-randomised, stepped...

Does Resilience Mediate Carer Distress After Head and Neck Cancer?

Caring for patients with head and neck cancer (HNC) can have significant negative psychological and practical impact; however, some carers seem able to cope effectively. Little research has investigated this resilience among carers. The objective of this study was to investigate the resilience levels among carers of patients with HNC. Carers (n = 51) from 2 cancer services in New South Wales completed the Resilience Scale (RS), the Head and Neck Information Needs Questionnaire, and the Hospital Anxiety and Depression Scale. Hospital Anxiety and Depression Scale cutoff scores (>8) were used to classify carers with clinically significant levels of anxiety or depression. The majority of carers (67% [34/51]) reported moderately high to high resilience. Rates of anxiety and depression among carers were 27.4% and 9.8%, respectively. Higher resilience scores were significantly correlated with lower anxiety and depression scores, as well as increasing age. Resilience Scale scores were independent of the severity of the HNC. There were no significant correlations between RS scores and Head and Neck Information Needs Questionnaire scores. Finally, increasing RS scores were associated with a decreasing probability of possible anxiety or depression. These results indicate that higher resilience in carers of HNC patients was associated with lower levels of psychological distress. Further investigation into the relationship between resilience and carer psychological wellbeing is warranted. If further evidence supports the findings of this study, then investigating ways to build resilience will be an important clinical option for reducing carer morbidity associated with anxiety and depression. The RS could be used to assess resilience levels among carers of HNC patients.

174 SYSTEMATIC REVIEW AND META-ANALYSIS OF THE EFFECT OF PRE-TRANSPLANT DIABETES MELLITUS ON 5-YEAR MORTALITY AFTER LIVER TRANSPLANTATION

A total of 307 people completed the questionnaire: 47 patients, 17 carers, 62 clinicians and 181 public respondents. Overall there was a preference for maintaining the status quo: 52.1 stated a preference for the current system, 38.4 for an unrestricted listing policy and 9.4 for a highly restricted policy. However, preferences differed between groups: an less restrictive listing policy was preferred by the majority of carers and also public respondents, whereas a majority of patients and clinicians preferred the current listing policy (figure 1). However, there were differences between patient subgroups, with those who had been listed being more inclined to favour the current process. The results show for the first time that there is general support amongst relevant groups for a process of selection for liver transplantation. There are some differences in opinion between groups. It is important that the views of these groups are considered when formulating transplant policy. The general support for selection of liver transplant candidates mandates a transparent and rational selection policy.

Mindfulness-based CBT for carers of service users

Mindfulness training may be helpful to reduce stress for informal carers of mental health service users. However, this training is intensive and it is not known if carers can commit the time required. This article describes a service evaluation of mindfulness-based cognitive therapy for stress reduction (MBCT-SR) course for eight carers of relatives with mental health problems. The course was feasible and acceptable for the majority of carers who attended and their caring role was not a barrier to engagement with the programme.

Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability

Planning for the future care of adults with an intellectual disability after the main family carer ceases their care, continues to be a sensitive and difficult time posing challenges for service providers internationally. Limited research has been undertaken on this topic because until recently, people with intellectual disability usually pre-deceased their parents. This study examined ageing carers' preferences for future care and the support systems required to make such future plans. The study was conducted in one region of the United Kingdom with a high proportion of family carers. A mixed methods design was employed. In Stage 1, a structured questionnaire was used to collate information on the health, caregiving demands and future planning preferences of 112 parent and sibling carers; aged 60-94 years. In Stage 2, 19 in-depth semistructured interviews were undertaken with a sample of carers to explore a range of issues around future planning. Over half of the carers were lone carers, mainly female, with many reporting a wide range of health problems. A third of these carers reported that their caregiving resulted in high levels of anxiety. The main preference of the carers was for the person to remain in the family home, with either the family and/or paid staff to support them. A minority of parent carers preferred the person to move into the home of a sibling, although some favoured the person moving to a residential facility with other people with intellectual disabilities. The majority of carers did not want their relative to move into an older people's residential/nursing facility. In the qualitative data, four main themes were identified around future planning: unremitting apprehension, the extent of planning, obstacles encountered and solutions for future planning. Avoidance, lack of guidance and a lack of appropriate residential provision were cited as obstacles to making future plans compounded by the emotional upset experienced by carers in thinking about the future. Findings of this study clearly identify the emotional, informational and practical supports required by these ageing family carers. These findings have national and international relevance in influencing how governments and service providers support parent and sibling carers to proactively plan for the future, and in the development of both in-home and out-of-home options when a family carer can no longer provide care. This is more urgent than ever given the growing numbers of older persons with intellectual disabilities in future decades.