Primary Informal Carers Research Articles

Health literacy and eHealth literacy and their association with other caring concepts among carers of people with dementia: A descriptive correlational study.

Health literacy (HL) and eHealth literacy (eHL) can facilitate carers of people with dementia (PwD) to search, find, assess and apply information related to dementia-specific issues from different resources. There is a lack of research with regard to HL and eHL among carers of PwD. The aim of this study is to identify the levels of HL and eHL among carers of PwD in Greece and Cyprus and to search for the associations with other caring concepts. This study followed a descriptive correlational design. In total, 174 primary informal carers of PwD, mostly women, over 45years old and with more than 12years of education and 67 secondary carers (family, friends or neighbours) participated in the study. Primary informal carers completed a face-to-face survey on the level of HL and eHL, internet use, dementia-specific internet use, care-giving self-efficacy, coping strategies, care-giving perceptions and social support. Primary informal carers reported a high level of eHL and HL. Carers with higher HL were more likely to report higher score of eHL, care-giving self-efficacy and lower score of problematic/dysfunctional coping. Higher score of eHeals-Carer "information seeking" was related with higher use of emotion-focused strategies. From this study, a positive message was received with regard to the role of HL and eHL in the everyday caring life. Non-for-profit organisations and healthcare professionals could integrate in their practice assessment tools and develop tailored training courses for carers enhancing low level of HL and eHL.

The influence of attachment style and relationship quality on quality of life and psychological distress in carers of people with epileptic and nonepileptic seizures

BackgroundSeizure disorders affect not only the individual living with seizures, but also those caring for them. Carer–patient relationships may be influenced by, and have an influence on, some aspects of living with seizure disorders — with potentially different interactions seen in epilepsy and psychogenic nonepileptic seizures (PNES). ObjectivesWe studied the influence of patient and carer attachment style and relationship quality on carer wellbeing and psychological distress, and explored whether these associations differ between carers for people with epilepsy and for those with PNES. MethodsConsecutive adult patients with epilepsy (N = 66) and PNES (N = 16) and their primary informal carers completed questionnaires about relationship quality, attachment style, and psychopathological symptom burden. We used correlation analysis to identify associations between relationship quality, attachment style, and carer depression, anxiety, and wellbeing; and to explore differences in these associations between carers for people with epilepsy and for those with PNES. ResultsOverall, 25.3% of carers for people with epilepsy or PNES had scores above the clinical cutoff for depression and 39.6% for anxiety; significantly more carers for people with PNES reported clinically significant depression (47.1% vs. 20.0%), but there was no difference in anxiety rates likely to be of clinical relevance. Correlations differed significantly between carers for people with epilepsy and for those with PNES in terms of patient quality of life and carer anxiety (rE = −0.577, rPNES = −0.025); seizure severity and carer depression (rE = 0.248, rPNES = −0.333) and mental wellbeing (rE = −0.356, rPNES = 0.264); patient depression and carer anxiety (rE = 0.387, rPNES = −0.266); and patient anxious attachment and carer anxiety (rE = 0.382, rPNES = 0.155). SignificanceClinically evident levels of psychological distress are prevalent among carers for people with epilepsy and PNES. Clinical and relationship variables affect carer quality of life differently depending on whether care is provided for individuals with epilepsy or PNES.

Prevalence and predictors of carer burden and depression in carers of patients referred to an old age psychiatric service

Too little is currently known about the prevalence of and risk factors for depression and carer strain among informal carers of community-dwelling elderly mentally ill. This study seeks to assess the prevalence of depression, using the Geriatric Depression Scale-15 (GDS-15), the degree of carer burden/strain, and their risk factors among the primary informal carers of patients referred to our community-based old age psychiatry service. A cross-sectional study design was used, with the subjects comprising 100 primary informal carers of patients who live at home and were referred to our service. The main carer measures were the GDS-15 and an adapted version of Gilleard's Strain Scale. Patients were assessed the Clifton Assessment Procedure for the Elderly-Survey version, the GDS-15 and the Mini-mental State Examination. Depression was found in 21% of the carers (a score of 5 or more on the GDS-15). The more problem behaviors identified and the greater the functional impairment of the patient, the higher the strain score deciles and the more likely the carer was to be depressed. Spouses were associated with lower carer strain scores. Patient diagnoses did not affect carer depression or carer strain. We found high levels of depression in the primary carers of community-dwelling patients attending an old age psychiatric service. The patients' behavior and their cognitive and functional ability conferred greater risk of carer depression or strain than their diagnosis. These risk factors may help identify carers at risk of strain and depression.

Negative Impact and Positive Value in Caregiving: Validation of the COPE Index in a Six-Country Sample of Carers

The present study attempts to further validate the COPE Index on a large sample of carers drawn from six European countries. We used a cross-sectional survey, with approximately 1,000 carers recruited in each of six countries by means of a common standard evaluation protocol. Our saturation recruitment of a designated quota of carers occurred by means of several channels, in identified geographical zones within countries. Interviews were carried out with primary informal carers by use of a common assessment tool. We subjected items of the COPE Index to principal component analysis and we assessed emergent components through the use of Cronbach's alpha reliability procedures. We examined factor components as summative scales for confirmatory correlations with caregiving and psychological variables. Three components emerged, which we identified as the negative impact of caregiving, the positive value of caregiving, and the quality of support for caregiving. Internal consistency was good for negative impact and satisfactory for positive value and quality of support. Negative value was most consistently and strongly correlated with caregiving and psychological variables, although we did find diverse associations between these variables and the COPE Index subscales. The COPE Index is a brief, first-stage assessment of some sophistication that can enable health and social care professionals to develop appropriately targeted interventions to enhance the positive aspects of the caregiving experience and quality of support, as well as reduce the negative impacts of caregiving.

Understanding the use of respite services among informal carers

To examine the use of respite services among carers of non-institutionalised individuals aged 15 and over with either profound or severe disabilities. Based on data collected from the Australian Survey of Disability, Ageing and Carers in 2003, the investigation evaluated the statistical significance of a number of carer and recipient characteristics on the likelihood of the use of respite services. Further analysis assisted in identifying the support most desired by the majority of carers (88.6%, n = 243 690) who have never used respite. The results revealed that social and cultural factors played a critical role in the receipt of respite services. Family relationships were important. Just under one-fifth of all primary carers most preferred more financial assistance in their role as caregiver. After controlling for confounding variables it was found that, compared with other forms of assistance, the desire for an improvement in the primary carers' own health was more likely among non-respite users. This may reflect the carers' preference to improve their own capacity to service the recipient rather than rely on others outside the household. Since the recipients under investigation typically possess core communication restrictions and highly individualised needs, it is speculated that carers perceive family members as better able to interpret and meet the sporadic and individualised care demands of recipients. Given the low usage of respite services among primary informal carers, policy makers and health organisations need to dispel the "one size fits all" approach to support services for households.

A longitudinal study of home care clients and their informal carers

The objective of the longitudinal study was to monitor physical and cognitive changes in a population of 330 older people being supported at home by health services. The participants were 75 years and older and classified as having moderate-to-high needs. A total of 210 primary informal carers were recruited to determine their specific needs and how they coped as dependency levels of their care-recipients changed. Data were collected using six different tools. Two questionnaires were mailed out to participating carers. Assessments of care recipients were carried out at three sampling points over the study period. The clients showed a significant increase in physical dependency and an overall increase in cognitive impairment over time. Only 32% of carers lived with care recipients, and changes in dependency, cognitive changes, lack of respite and performing activities of daily living were all major stressors for informal carers. The needs of informal carers are reported and discussed in the context of recommendations of the Commission on the Future of Health Care in Canada.

An evaluation of the domiciliary occupational therapy service in palliative cancer care in a community trust: a patient and carers perspective

In the past 20 years there has been considerable growth in the provision of palliative care services. The shift in emphasis from hospice and hospital care to the development of community services has been significant. This enables people to be cared for at home and is in keeping with Government agenda. While this may be beneficial for the patient and fit in with the wishes of the family, it is likely to put heavy demands on the coping resources of individual carers. The views of service users are of paramount importance when discussing service evaluation and patient, family and carer empowerment. This research presents the findings of an evaluation of the domiciliary occupational therapy service provided for patients in the palliative stage of cancer care in North and West Belfast from the perspective of the patients and carers. For the purpose of this study, the palliative stage of cancer care is defined as the point from which the patient is no longer responsive to curative treatment, until death. A sample of 30 patients and their primary informal carers were selected using purposive sampling. A structured interview was carried out with both the patients and their carers to obtain views. Results suggest that although both patients and their carers value the service provided and report high levels of satisfaction, there are gaps identified in service provision and a lack of clear information among patients and their carers about the role of the occupational therapist and the range of services they can provide. There is a need to build upon the good work being done by domiciliary occupational therapists in the area of palliative cancer care and increase education and resources to ensure that a patient-centred, holistic, approach to care is used, addressing both the needs of the patient and their carers.

A qualitative study of stroke patients' and carers' perceptions of the stroke family support organizer service.

To investigate stroke patients' and carers' perceptions of the family support organizer (FSO) service in order to highlight its value for potential purchasers and to help shed light on findings from randomized controlled trials. Twenty semi-structured interviews were undertaken with a subsample of stroke patients and their primary informal carers after completion of nine-month outcome assessments as part of a randomized controlled trial. Community stroke services in North Nottinghamshire, UK. Interviewees who received the service reported that the presence of an FSO was valuable in many respects, including helping to claim benefits, as a source of information on stroke, and providing continuity between stroke services. Emotional support was only described by a few. Interviewees who did not receive the service described feelings of isolation and being let down by other stroke services after discharge. They also reported problems accessing information. Help needed to address the practical problems after stroke was commonly reported. For those who did not receive the FSO service, access to support appeared to be found through other channels. The FSO service appeared to be an information service. In order to evaluate community stroke services, a mixture of qualitative and quantitative outcome measures are necessary.

The social construction of risk by community psychiatric nurses and family carers for people with dementia

This paper examines the conversational and discursive processes through which situations are constructed as a risk by informal carers and community psychiatric nurses working with people who have dementia. The data were taken from 24 tape recordings of domiciliary meetings between primary informal carers for people with dementia and their community psychiatric nurse (CPN). Data were analysed using techniques developed from conversation analysis and discourse analysis. The analysis identifies four stages associated with the construction of risk by informal carers and CPNs. These stages are fully discussed in relation to the provision of care.

The conversational and discursive construction of community psychiatric nursing for chronically confused people and their families.

The paper examines the conversational and discursive processes that occur within domiciliary visits between community psychiatric nurses (CPNs) and relatives of chronically confused people. Three conversation formats are identified, through which talk between CPNs and carers is organised. In addition, various discursive practices are also identified within domiciliary meetings. The contribution of these conversational and discursive features to the work of CPNs is fully discussed in relation to what they accomplish within the visit. The data comprised 48 paired tape recordings. Of these recordings, 24 were unstructured interviews between CPNs and informal carers to people who had been diagnosed as having dementia by a medical practitioner. In addition, 24 domiciliary meetings between primary informal carers and their CPNs were tape recorded and fully transcribed. The transcripts were analysed using techniques drawn from conversation analysis and discourse analysis. The implications of the findings upon CPN practice are examined.

Predictors of carer distress following stroke

Whilst there is a considerable literature surrounding predictors of depressed mood in stroke survivors, much less research has been directed towards identifying the impact of a stroke on primary informal carers and the nature of the relationship between patient and carer characteristics, stroke consequences and carer distress. This review attempts to elucidate such relationships so that implications for health and social care provision can be drawn.