Reduced vision in older adults with age related macular degeneration interferes with ability to care for self and impairs role as carer

Aim: To study the relation between visual impairment and ability to care for oneself or a dependant in older people with age related macular degeneration (AMD). Method: Cross sectional study of older people with visual impairment due to AMD in a specialised retinal service clinic. 199 subjects who underwent visual function assessment (fully corrected distance and near acuity and contrast sensitivity in both eyes), followed by completion of a package of questionnaires dealing with general health status (SF36), visual functioning (Daily Living Tasks Dependent on Vision, DLTV) and ability to care for self or provide care to others. The outcome measure was self reported ability to care for self and others. Three levels of self reported ability to care were identified—inability to care for self (level 1), ability to care for self but not others (level 2), and ability to care for self and others (level 3). Results: People who reported good general health status and visual functioning (that is, had high scores on SF36 and DLTV) were more likely to state that they were able to care for self and others. Similarly people with good vision in the better seeing eye were more likely to report ability to care for self and others. People with a distance visual acuity (DVA) worse than 0.4 logMAR (Snellen 6/15) had less than 50% probability of assigning themselves to care level 3 and those with DVA worse than 1.0 logMAR (Snellen 6/60) had a probability of greater than 50% or for assigning themselves to care level 1. Regression analyses with level of care as the dependent variable and demographic factors, DLTV subscales, and SF36 dimensions as the explanatory variables confirmed that the DLTV subscale 1 was the most important variable in the transition from care level 3 to care level 2. The regression analyses also confirmed that the DLTV subscale 2 was the most important in the transition from care level 3 to care level 1. Conclusions: Ability to care for self and dependants has a strong relation with self reported visual functioning and quality of life and is adversely influenced by visual impairment. The acuity at which the balance of probability shifts in the direction of diminished ability to care for self or others is lower than the level set by social care agencies for provision of support. These findings have implications for those involved with visual rehabilitation and for studies of the cost effectiveness of interventions in AMD.

Illness perceptions among carer - survivor dyads are related to psychological distress among Oesophageal cancer survivors

Objective

To examine the extent to which the illness perceptions of Oesophageal cancer survivors and the illness perceptions of their carers explain the survivors' levels of psychological distress (in terms of anxiety and depression symptoms) relative to demographic and biomedical variables and patients' coping strategies.

Method

Everyone registered with the Oesophageal Patients' Association in the UK was mailed a questionnaire booklet containing questions about medical and demographic variables, the Illness Perception Questionnaire-Revised, the Cancer Coping Questionnaire, and the Hospital Anxiety and Depression Scale. Patients were asked to pass a modified version of the Illness Perception Questionnaire-Revised to someone they identified as a carer. Complete responses were received from 317 dyads.

Results

Regression models indicated that the variables measured could explain 56% of the variance in anxiety and 54% of the variance in depression. Patients' illness perceptions explained the majority of this variance. Positive focus coping strategies were also found to be important in explaining psychological well-being. Some of the carers' illness perceptions made a significant contribution to the explanation of the patients' levels of psychological distress, and in some instances, carer perceptions were found to moderate the relationship between patients' perceptions and psychological distress.

Conclusion

The findings suggest that cognition-based interventions could potentially be most effective in minimizing emotional distress among survivors of Oesophageal cancer. This study also shows that these interventions could usefully be delivered at the level of the patient–carer dyad.

Service User and Carer Involvement in Role-Plays to Assess Readiness for Practice

Service user and carer involvement in social work education is now well established since its inception as a compulsory requirement in the social work curriculum in the United Kingdom in 2003. Since then, there have been many examples of how such involvement has been approached by education providers. Nevertheless, one of the key obstacles and challenges in this field continues to centre on the need to achieve non-tokenistic user involvement which cements the engagement of service users and carers at the heart of social work education. This paper describes one such initiative where service user and carer colleagues in a university in Northern Ireland have been actively involved in the assessment of first year social work students’ preparation for their first period of practice learning. The paper presents the background to this initiative explaining how the project unfolded; the detailed preparations that were involved and the evidence gathered from evaluations undertaken with the students, service users and carers, and academic colleagues who were all involved. We believe that the findings from this project can contribute to the advancement of existing knowledge in the field in exploring and recommending creative methodologies for user involvement in social work education.

Hospice at Home service:The carer's perspective

Goals of the work: The aim of this study was to explore the bereaved caregivers' experience of the Hospice at Home service delivered in one region of the UK. Materials and methods: Three hundred and ten bereaved caregivers identified by the Community Specialist Palliative Care Team or Hospice at Home nurse, who met inclusion criteria, were sent a postal questionnaire to explore their views and experiences of the Hospice at Home service. Data were collected during 2002. Main results: In total, 128 caregivers responded, providing a 41% response rate. Most caregivers believed that the Hospice at Home service enabled their loved one's wish to be cared for and to die at home to be fulfilled. A number of suggestions were made relating to increased awareness of the service, training for staff, coordination of service delivery and bereavement support. Conclusions: The bereaved caregivers were thankful for the Hospice at Home service; however, the need for practical support, increased awareness of the Hospice at Home service and bereavement support were also identified. Although the bereaved caregivers provided a valuable insight in evaluating service provision, it is acknowledged that some caregivers are often so grateful for the treatment and care received that they tend to forget or ignore their less pleasant experiences. Further research is therefore required using an in-depth qualitative approach investigating on the carers' views and experiences of accessing the Hospice at Home service. © 2006 Springer-Verlag.

Decompressive hemicraniectomy following malignant middle cerebral artery infarctions:a mixed methods exploration of carer experience and level of burden

Purpose: This study explores the experiences and sense of burden of family carers of survivors of malignant middle cerebral artery infarctions who had undergone decompressive hemicraniectomy. To date, there have been no studies examining carer outcomes among this unique population. This study, taken alongside an already published study of survivor outcomes, provides a more holistic picture with regard to sequelae within the sample. Method: Six family carers completed the Sense of Competence Questionnaire and the Hospital Anxiety and Depression Scale. These results were compared with existing normative data. Carers also consented to a semi-structured interview. Interview data were examined using thematic content analysis. Consistent with the mixed methods design, quantitative and qualitative findings were integrated for further analysis. Results: While carers experienced many losses, their overall sense of burden was not outside 'Average' limits, nor did they experience clinically significant symptoms of depression. All carers identified methods of coping with the demands of caregiving. These included intrapersonal, interpersonal and practical strategies. All carers apart from one were able to identify areas of post-traumatic growth. Conclusion: Carers will benefit from information, support and care. In addition, problem solving skills are essential in managing the myriad difficulties that arise in the aftermath of stroke. [Box: see text].

Service user and carer participation in an endoscopy nursing programme

This article reports an initiative to improve students' insight into service user and carer experience of endoscopy, particularly those with severe disability, such as spinal cord injury. This insight has the potential to improve the information provided and level of person-centred care in an endoscopy service. It was evident in the feedback from the classroom encounter that the teaching and learning strategy had a positive outcome, which will allow us to integrate the approach into future curriculum development and delivery, bringing the lived experience from the service user and carer perspective into the classroom. Students engaged in discussion and used their reflective skills to develop sensitivity to those with physical disability and complex needs requiring endoscopy procedures.

‘Making it real’: evaluating the impact of service user and carer involvement in social work education

Service user and carer involvement (SUCI) in social work education in England is required by the profession’s regulator, the Health and Care Professions Council. However, a recent study of 83 HEIs in England reported that despite considerable progress in SUCI, there is no evidence that the learning derived from it is being transferred to social work practice. In this article we describe a study that examines the question: ‘What impact does SUCI have on the skills, knowledge and values of student social workers at the point of qualification and beyond?’ Students at universities in England and Northern Ireland completed online questionnaires and participated in focus groups, spanning a period immediately pre-qualification and between six to nine months post-qualification. From our findings, we identify four categories that influence the impact of service user involvement on students’ learning: student factors; service user and carer factors; programme factors; and practice factors; each comprises of a number of sub-categories. We propose that the model developed can be used by social work educators, service user and carer contributors and practitioners to maximise the impact of SUCI. We argue that our findings also have implications for employment-based learning routes and post-qualifying education.

Association analysis of apolipoprotein E genotype and risk of depressive symptoms in Alzheimer's disease

OBJECTIVES: Behavioural and psychological symptoms of dementia (BPSD) are potent predictors of carer distress and admission to institutional care. In Alzheimer's disease (AD), depressive symptoms are one of the most common complaints affecting around 50% of all patients. There is speculation these symptoms result from known genetic risk factors for AD, therefore we investigated the role of apolipoprotein E epsilon4 in the aetiology of depression in AD. METHODS: In this well-characterised cohort (n = 404) from the relatively genetically homogeneous Northern Ireland population, we tested the hypothesis that genetic variants of apolipoprotein E influence the risk for depressive symptoms in AD patients using the Neuropsychiatric Inventory (NPI-D) to determine the presence of depressive symptoms during the dementing illness. RESULTS: A total of 55% of patients exhibited a history of depression/dysphoria during the course of the illness as gathered by the NPI-D questionnaire. Forty-six percent were suffering from depression/dysphoria when the analysis was restricted to the month prior to interview. No statistically significant association between genotypes or alleles of apolipoprotein E and depression/dysphoria in AD was observed, nor was any association noted between the presence of severe symptoms and genotypes/alleles of apolipoprotein E. CONCLUSIONS: These results suggest apolipoprotein E genotype creates no additional risk for depressive symptoms in AD.

The Experience and Practice of Approved Social Workers in Northern Ireland

This article reports on the first extensive survey of Approved Social Worker (ASW) activity under the Mental Health (Northern Ireland) Order 1986. The integrated health and social services organizational structure, the adverse effects on individual mental health of the legacy of thirty years of civil conflict and the move from hospital to community care are significant features which have influenced the delivery of mental health social work services locally. The practice and experience of ASWs was surveyed by postal questionnaire and user and carer experience of compulsory hospital admission was investigated by a series of focus groups. The study revealed that two‐thirds of ASWs had experience of acting as an applicant in compulsory hospital admission during the past two years. Nearly half (42 per cent) of these ASWs had reported experience of between one and five admissions and one‐tenth had completed over twenty admissions in the two‐year period. In only a small minority of cases did joint face‐to‐face assessment with the General Practitioner (doctor) take place; nearly half of ASWs reported difficulties in obtaining transport; and only one‐fifth of ASWs had experience of acting as a second approved social worker. Half of ASWs reported experience of guardianship, either as applicant or in making the recommendation. Both service users and carers reported a lack of understanding about the role of the ASW and complained about the lack of alternative resources that ASWs could use to prevent hospital admissions. These findings are discussed and a number of recommendations are proposed for improvements to approved social worker practice.