Carer Involvement Research Articles

Mortality in schizophrenia and other psychoses: a 10-year follow-up of the ӔSOP first-episode cohort.

The excess mortality in people with psychotic disorders is a major public health concern, but little is known about the clinical and social risk factors which may predict this health inequality and help inform preventative strategies. We aimed to investigate mortality in a large epidemiologically characterized cohort of individuals with first-episode psychosis compared with the general population and to determine clinical and social risk factors for premature death. All 557 individuals with first-episode psychosis initially identified in 2 areas (Southeast London and Nottinghamshire, United Kingdom) were traced over a 10-year period in the ӔSOP-10 study. Compared with the general population, all-cause (standardized mortality ratio [SMR] 3.6, 95% confidence interval [CI] 2.6–4.9), natural-cause (SMR 1.7, 95% CI 1.0–2.7) and unnatural-cause (SMR 13.3, 95% CI 8.7–20.4) mortality was very high. Illicit drug use was associated with an increased risk of all-cause mortality (adj. rate ratio [RR] 2.31, 95% CI 1.06–5.03). Risk of natural-cause mortality increased with a longer time to first remission (adj. RR 6.61, 95% CI 1.33–32.77). Family involvement at first contact strongly reduced risk of unnatural-cause mortality (adj. RR 0.09, 95% CI 0.01–0.69). Our findings suggest that the mortality gap in people with psychotic disorders remains huge and may be wider for unnatural-cause mortality than previously reported. Efforts should now focus on further understanding and targeting these tractable clinical and social risk factors of excess mortality. Early intervention and dual diagnosis services may play a key role in achieving more rapid remission and carer involvement and addressing substance use problems to reduce excess mortality in psychosis.

‘Providing a Link with the Real World’: Learning from the Student Experience of Service User and Carer Involvement in Social Work Education

Social work has long placed an emphasis on involving users and carers in the education of practitioners, an emphasis driven by service users and carers themselves, the value base of social work, and by policy and legislation from successive governments and regulatory bodies. Recent changes in regulation and professional standards in social work suggest a continuing commitment to service user and carer involvement. This paper argues that in order to ensure a sustainable commitment, there needs to be greater evidence of the value and purpose of such involvement. Whilst there is a considerable body of literature on this issue in social work education, little focus is on any impact on current and future practice of social work students. The paper discusses a research project addressing this issue from the perspective of social work students. Findings suggest that the involvement of service users and carers in their training was perceived by students as overwhelmingly positive, should be enhanced and that they believed that these experiences were taken forward in their practice. The paper also identifies key points that could inform best educational practice.

Commentary: Getting fathers into parenting programmes – a reflection on Panter‐Brick et al. (2014)

Research, policy and clinical practice focussed on engaging and working with fathers and their children often seems to oscillate between extremes. Where policy documents relating to children's health and wellbeing do include fathers it is often in a restricted way, and similarly discussions about the role of fathers in the media are often one-dimensional. It is sometimes hard to escape a feeling of despondency at the continuing exchanges, too often made ignoring or misinterpreting years of research regarding the importance of co-parenting and the involvement of fathers and other carers. One of the great contributions of child and adolescent mental health professionals has been the drawing of attention to the importance of family processes and systemic thinking, yet in relation to parenting, this seems to have been increasingly overlooked in recent years with an increased focus on attachment or social learning inspired approaches for a single parent-child dyad. In this issue of the JCPP, in a thorough and timely review, Catherine Panter-Brick and colleagues call for a clear change to the way parenting programmes are considered, studied and implemented. In this commentary, we reflect on this call and look at three challenges for CAMHS professionals.

Service user and carer involvement in pre-registration student selection.

An online questionnaire was undertaken to evaluate the involvement of service users and carers in the student selection process and to identify how the pre-registration process might be enhanced. Respondents comprised 34 students, all of whom had been selected for the pre-registration nursing education programme following this process, and 22 others, including service users and carers, practitioners, and lecturers, who had been involved in the selection process. A positive attitude to the involvement of service users and carers was evident in all groups, although there were some concerns and suggestions about how and when involvement of service users and carers should occur. The main findings were that service users could have an important role in contextualising mental health in people's lives.

The crisis in psychiatry: A public health perspective

The role and responsibilities of psychiatry and psychiatrists have changed significantly in recent decades as a consequence of changes in society. The target of psychiatrists has moved from the treatment of specific mental disorders to the management of a wide range of psychological conditions. Following these changes, a public health approach has been claimed as necessary for psychiatric practice and research, given the current ongoing crisis in mental health. If we want to promote a public health approach, the following actions should be responsibly taken by modern mental health professionals: (1) the identification of causes of mental disorders, (2) the refinement of diagnoses, (3) the social inclusion of patients, (4) the involvement of users and carers in mental health research and practice, and (5) the improvement of psychiatric treatments and services. This crisis should represent a stimulus for all psychiatrists and a reconceptualization of psychiatry as public health is not in question.

A qualitative exploration of service users' information needs and preferences when receiving a serious mental health diagnosis.

Helpful strategies for communicating news of a serious mental health diagnosis are poorly understood. This study explored service users' preferences for how they would like clinicians to deliver such news when a diagnosis of mental illness is made. Qualitative interviews were conducted with forty-five individuals identifying with serious mental illness in eleven community based mental health facilities. Inductive thematic analysis resulted in eight primary themes. Five themes related to the structure and content of the discussion; including a focus on information exchange, using an individualized collaborative partnership paradigm, addressing stigma, balancing hope with realism, and recognizing the dynamic nature of diagnosis. The remaining themes related to the involvement of others; including the importance of clinicians' communication and relationship skills, involvement and education of carers, and offering an opportunity for peer support. The product of the synthesis of themes is a step-wise model for communicating news of mental health diagnosis.

Mental health professionals and information sharing: carer perspectives.

The important role played by carers of those with mental health problems is frequently undervalued among healthcare professionals. To identify the difficulties encountered by carers in relation to obtaining information from mental health teams. Participants in the study included carers or family members of persons with mental illness who were affiliated with a support group in Ireland. Information was gathered using an 18-item self-report questionnaire. This is an amended version of the Carer Well-Being and Support Questionnaire for carers of people with a mental health problem or dementia. One-hundred and fifty-nine carers complete the questionnaire. On average respondents stated that they have been in the role of a carer for someone with a mental health problem for 14.4 years, spending a median of 20-h caring each week. Despite most carers maintaining that they are generally satisfied with the support offered to them from medical and/or care staff, the majority (56.3%) of respondents stated that they have specifically encountered difficulties accessing information from the treating mental health team. The main reasons given to them by the mental health team for withholding information include: lack of patient consent (46.2%) and unavailability of a team member (46.2%). From a carer perspective, respondents stated that the main reason they feel there is difficulty in accessing information is a lack of concern for their role as a carer in the patient's management (60.5%). More than 75% of all respondents are afraid of negative consequences for them or for the person in their care as a result of information being withheld by the treating team. Carer involvement is essential for the complete and effective management of individuals with mental illness. Confidentiality should not be used as a reason for completely excluding carers.

Research essentials. Patient-public-engagement involving children and young people.

Central to the modernisation agenda in the UK, patient-public involvement (PPI) emphasises the involvement of service users and carers in all aspects of health care, from commissioning of services and service design to contributing to research agendas. This involvement is grounded in a desire to make health care more responsive to the needs of the patient and enhance the quality of care and treatments.

Patient, psychiatrist and family carer experiences of community treatment orders: qualitative study.

Current literature on personal experiences of community treatment orders (CTO) is limited. This paper examines participants' experiences of the mechanisms via which the CTO was designed to work: the conditions that form part of the order and the power of recall. We also report an emergent dimension, legal clout and participants' impressions of CTO effectiveness. This paper will contribute to a fuller picture of how the law is implemented and how CTOs operate in practice. In-depth qualitative interviews were conducted with a purposive sample of 26 patients, 25 psychiatrists and 24 family carers about their experiences and views of CTOs. Data were analysed using the constant comparative method. All three sample groups perceived the chief purpose of CTOs to be medication enforcement and that its legal clout was central to achieving medication adherence. Understanding of how the inbuilt mechanisms of the CTO work varied considerably: participants expressed uncertainty regarding the enforceability of discretionary conditions and the criteria for recall. We found mixed evidence regarding whether recall simplified responses to relapse or risk. The range of experiences and views identified within each group suggests that there is no single definitive experience or view of CTOs. The (perceived) focus of the CTO on medication adherence combined with the variations in understanding within and across groups might not only have consequences for how CTOs are viewed and subsequently experienced, but also for broader goals in patient care and patient and carer involvement.

Factors influencing post-stroke rehabilitation participation after discharge from hospital

Aim: To explore what the obstacles are that deter patients from continuing stroke rehabilitation after discharge from hospital in Singapore. Methods: In this qualitative study, individual semi-structured telephone interviews were undertaken and analysed using inductive thematic analysis. Thirty one stroke patients, who had been discharged from the hospital after inpatient rehabilitation (mean age=66.46 years, mean duration post-discharge=95.82 days), were interviewed. Results: Five themes were identified as obstacles to post-discharge stroke rehabilitation including: the means to access rehabilitative services; lapse in discharge coordination; family members’ views and actions; discrepancies in expectation; and the perception that rehabilitation is simple. Participants indicated a need for timely and appropriate information, delivered according to their individualised needs. Conclusion: Study findings revealed that the absence of a smooth transition through the continuum of stroke care and not having a common understanding of rehabilitation accounts for the lack of adherence to therapy recommendations. The results suggest that clinicians need to be more aware of their role in providing well-coordinated information about therapy. The study also highlighted the need to review the goal-setting processes that guide the course of rehabilitation. Goals should be more patient-centred to reduce the discrepancies in expectations of rehabilitation. There needs to be a greater involvement of carers in discharge planning to minimise the dissatisfaction in care arrangements and information delivery.

Promoting family-focused approaches within adult drug services: The potential of the ‘Senses Framework’

BackgroundPolicies across countries promote family-focused engagement with adult drugs services however this is rarely offered routinely and relationships with carers are often poor. Research in mental health and older people's services suggests that improving the relationships between carers and service providers is fundamental to enhancing the quality of services. One example is the Senses Framework which assesses the extent to which services are relationship-centred and provides deeper insight into the areas that require further improvement. The aim of this paper is to establish the extent to which relationship-centred care, as defined by the Senses Framework, is expressed in the interactions between carers, services providers and policy makers in adult drug service settings. MethodsA qualitative study, involving 8 focus groups and 32 individual interviews, was undertaken to explore carers’, service providers’ and policy makers’ experiences and understandings of family and carer involvement with drug services in Scotland, United Kingdom. ResultsTensions exist between carers, service providers and policy makers however there are also areas of commonality in which participants shared experiences and understandings of family and carer involvement with services. Our findings go beyond existing research which focuses largely on describing of the poor quality of relationships between carers, service providers and policy makers by providing a deeper theoretical insight into the nature of these relationships. In so doing, by focusing on the senses of belonging, continuity, security, achievement, purpose and significance, we present the possibility of resolving such tensions. ConclusionsWe think that implementing relationship-centred approaches to care, such as that in the Senses Framework, would provide a greater sense of therapeutic and strategic direction for those delivering and commissioning adult drug services in many countries.

Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease

BackgroundDignity therapy is a brief psychotherapy that has been shown to enhance the end of life experience. Dignity therapy often involves family carers to support patients weakened by illness and family carers are also the usual recipients of the legacy documents created. No research to date has examined the impact of dignity therapy on family carers at the time of the intervention. This study examined the effects of dignity therapy on family carers of people with motor neurone disease (MND).MethodsThis is a cross-sectional study utilizing a one-group pre-test post-test design with 18 family carers of people diagnosed with MND. Outcomes measured caregiver burden, anxiety, depression, and hopefulness. Acceptability was measured with a questionnaire. Feasibility was assessed by examining family carers’ involvement in the therapy sessions, time taken to conduct sessions, and any special accommodations or deviations from the dignity therapy protocol.ResultsThere were no significant pre-test post-test changes on the group level, but there were decreases in anxiety and depression on the individual level. Baseline measures indicate that 50% of family carers had moderate to severe scores for anxiety prior to dignity therapy. MND family carers saw benefits to the person with MND and to themselves after bereavement, but acceptability of dignity therapy at the time of the intervention was mixed with some family carers indicating it was helpful, some indicating it was harmful, and many expressing ambivalence. Dignity therapy involving MND family carers is feasible and the involvement of family carers has minimal impact on the therapy.ConclusionDignity therapy is not likely to alleviate caregiver burden in MND family carers, but it may have the ability to decrease or moderate anxiety and depression in distressed MND family carers. Dignity therapy is feasible and generally acceptable to MND family carers. Dignity therapists may provide a better experience for family carers when they are aware of acceptance levels and the quality of partner relationships.Trial registrationANZCTR Trial Number: ACTRN12611000410954

INITIATING DISCUSSION IN END OF LIFE CARE: CLINICIAN'S PERSPECTIVES

Background and AimsEngaging patients nearing the end of life in discussion about their subsequent treatment is regarded as a vital aspect to the provision of effective and cost-effective palliative care...

THE CHOICE CAMPAIGN

The Choice Campaign Introduction Offering patients and their carers opportunities to have conversations about preferences for care is key to enabling realistic decisions and choices. Feedback from acute trust clinicians...

The Health and Well-being of Service User and Carer Educators: a Narrative Enquiry into the Impact of Involvement in Healthcare Education

Service user and carer involvement is increasing in health and social care educationas a result of UK policy directives and Professional Statutory and Regulatory Body requirements. The study aimed to elicit the accounts of service user and carer educators' experiences in practice-based healthcare education in the UK. The overall aim was to illustrate the impact this has had on their health and well-being. A narrative inquiry approach was adopted in order to give a clearer and stronger voice to service users and carers by making their experience the primary focus of enquiry.Narratives were collected from five service users and carers who had extensive experience of involvement in healthcare education. The individual narrative material obtained was distilled into key points following a naturalistic perspective, ensuring that the findings and final story were a re-presentation of the narrator's experience.Participating in the research enabled the service users and carers to articulate specifically how involvement had positively affected their health and well-being. An additional outcome included the personal artefacts that can be utilised in teaching and learning in order to bring the service user and carer voice to life.This study contributes to the emerging knowledge and understanding that service user and carer involvement in health education can be a truly collaborative, enriching experience,producing profound personal change, with improvements in health and well-being. Effective involvement is dependent upon appropriate support networks whereby service users and carers develop connections with staff and other service users and carers that result in a sense of belonging.

The vital voices that shape our training

Second-year doctoral trainee Sarah Morrison reflects on how much she has learned and gained from service user and carer involvement in teaching.

In Their Own Words: Young Peoples’ Vulnerabilities to Being Groomed and Sexually Abused Online

Little is known about why some children and young people are vulnerable to being groomed online, yet this has important implications for policy, practice and prevention. Therefore, the aim of this study was to identify factors contributing to a young person’s vulnerability towards online grooming. Thematic Analysis was conducted on eight interviews with young people (six females and two males) who had experienced online grooming, resulting in sexual abuse online and/or offline. The reasons why participants engaged with the offenders varied on most levels of the Bron-fenbrenner (1979) ecological model (including individual, family, community and society). The loss of family protection was found to be central in contributing to vulnerability, as is online risk taking behavior. Three victim vulnerability scenarios emerged: 1) multiple long-term risk factors, 2) trigger events and 3) online behavioral risks. In each of these scenarios, parental and family factors were very important. It is suggested that further research is needed to investigate the applicability of these scenarios to other samples. Recommendations include parent and carer communication and involvement with their children’s internet use, as well as consistent, early onset internet safety education.

EPA-0760 - Expressed emotion, life events and level of anxiety in eating disorders in comparison with other psychiatric diagnosis

Eating Disorders (EDs) are chronic illnesses requiring long-term care and significant involvement of carers. Expressed Emotion (EE) is a measure of the ‘emotional temperature’ of a family: an index of the relative's emotional answer in a certain situation. Literature suggests that EE scores are usually low in EDs families and the degree of family EE correlates with patients’ outcome. To compare EE, life events and anxiety between patients with diagnosis of EDs and patients with other psychiatric diagnosis. To measure the level of EE in EDs families in order to improve the quality of health care. We administered the following tests to 20 patients with EDs and 20 patients with other psychiatric diagnosis: the Level of Expressed Emotion Scale (LEE) in two versions, one for patients and one for relatives with the purpose of evaluating intrusiveness, emotional response, attitude toward disease, tolerance and expectation; the Paykel's Interview for recent life events in which the subjects had to point out stressful events; STAI Y1 concerning state anxiety and STAI Y2 concerning trait anxiety. We also recruited co-habiting relatives and compared the relative's EE and the EE perceived by patients. Statistical analyses are still in progress. Our preliminary results suggest that levels of EE are higher among the patients with a diagnosis of EDs, in contrast with results obtained by literature. We expect that our results will help to shed light on the issue of EE correlates to EDs.

Facilitating Shared Online Group Learning between Carers, Service Users and Social Work Students

We report on our progress in developing a pilot online group teaching innovation with 14 participants, including five service users and carers, and nine social work students. Enhancing student learning by providing shared educational opportunities between students, service users, and carers can be a challenge to organise but the project demonstrates some success in doing so. The evaluation suggests that even the smallest level of service user and carer involvement can enhance student learning and personal development during social work education and training.

Identifying the factors affecting the implementation of strategies to promote a safer environment for patients with learning disabilities in NHS hospitals: a mixed-methods study

BackgroundThere has been consistent evidence that people with learning disabilities experience health inequalities and poor NHS health-care provision, leading to avoidable harm and premature, avoidable death.ObjectivesTo describe the factors in NHS hospitals that promote or compromise a safe environment for patients with learning disabilities, in the light of national recommendations that hospitals should (1) identify patients with learning disabilities, (2) provide reasonably adjusted services, (3) involve carers as partners in care and (4) include patient and carer views in service development.DesignA 21-month mixed-method study carried out between 2011 and 2013, using questionnaire surveys, interviews, observation and monitoring of safety incidents.SettingSix NHS hospitals in the south of England.MethodsThe study employed mixed methodologies in three stages. Stage I involved mapping the systems and structural changes within each hospital site, with senior strategic managers asked to provide data on relevant policies. Stage II examined the effectiveness of implemented measures. Methods for this stage included an electronic questionnaire survey sent to all clinical staff (n = 990); face-to-face semi-structured interviews with clinical staff and strategic hospital managers (n = 68); semi-structured face-to-face interviews with adults with learning disabilities who had used the hospital in a 12-month period (n = 33); questionnaire survey (n = 88) and semi-structured interviews (n = 37) with carers of patients with learning disabilities who had been a patient during the 12-month period; and participant observation with patients (n = 8). Stage III assessed generalisability to other vulnerable patient groups and involved expert panel discussions with senior managers and senior clinicians at four sites (n = 42).ResultsExamples of good practice were not consistently replicated hospital-wide. The most common safety issues were delays and omissions of treatment and basic care. The main barriers to better and safer hospital care for people with learning disabilities were (1) the invisibility of patients with learning disabilities within hospitals, owing to a lack of effective flagging systems and a lack of staff knowledge and willingness to flag this group; (2) poor staff understanding of the specific vulnerabilities of people with learning disabilities, the reasonable adjustments to services that these patients may need and the Mental Capacity Act (Great Britain.Mental Capacity Act 2005. Chapter 9. London: The Stationery Office; 2005); (3) a lack of consistent and effective carer involvement and misunderstanding by staff of the carer role; and (4) a lack of clear lines of responsibility and accountability for the care of each patient with learning disabilities. The main enablers were the learning disability liaison nurse (LDLN), provided that this role was properly supported by senior management and carried sufficient authority to change practice; and ward managers who facilitated a positive ward culture and ensured consistent implementation of reasonable adjustments.ConclusionsThe vulnerabilities of people with learning disabilities can, and do, lead to compromised patient safety in NHS hospitals. Further research is needed as follows: (1) identifying the most frequently needed reasonable adjustments within the hospital care pathways of people with learning disabilities and their cost implications; (2) identifying the most effective structures for ensuring clear lines of responsibility and accountability for the care of patients with learning disabilities, including support needed by ward managers in order to carry day-to-day accountability; (3) investigating practical and effective ways of flagging patients with learning disabilities across NHS services and within NHS hospitals; (4) investigating, implementing and evaluating protocols for shared care; (5) evaluating LDLN posts nationwide; and (6) extending research recommendations (1) and (3) to patients with dementia and those with mental health problems.Study registrationComprehensive Clinical Research Network Portfolio, 10998; Integrated Research Application System Coordinated System for gaining NHS Permission, 74907.FundingThe National Institute for Health Research Health Services and Delivery Research programme.