Impact of the carer on length of hospital stay for mental health: Results from two Australian surveys

Informal carers play a vital role in supporting Australians living with a mental illness, including during the acute phases of illness; however, little is known about their impact on length of hospital stay. We aimed to investigate the impact of having a carer and of carer burden on length of hospital stay for mental health. Two Australian datasets were used. Data from the 2010 National Survey of High Impact Psychosis (n = 1825) were used to investigate the impact of having versus not having a carer on length of hospital stay for mental health. Data from the UQ Carer Survey 2016 (n = 105), a convenience sample of mental health carers, were used to investigate the impact of weekly hours of care (a measure of objective carer burden) on length of stay. Multiple logistic regression and correlation analyses were performed to investigate the association between carer status/burden and length of stay. Having a carer was associated with a significantly longer length of hospital stay; however, this relationship was no longer significant after adjusting for diagnosis, global functioning, depressive symptoms, deliberate self‐harm, mental health outpatient contacts and type of admission. Weekly hours of care did not significantly impact on length of stay. Patients with carers had poorer functioning which may be related to longer stays. Our analysis was not able to look at subgroups of carers with different needs. Future work is required to determine other components of the admission and discharge process where having a carer is influential.     

Predicting psychological distress of informal carers of individuals with major depression or bipolar disorder

Caring for someone with a mental illness is associated with high levels of burden and psychological distress. Understanding these factors could be important to prevent the development of physical and mental health problems in carers. The purpose of the present study was to determine the contribution of coping styles and social support in predicting the psychological distress reported by informal carers (IC) of individuals with major depression or bipolar disorder. IC (n = 72) of adults with a diagnosed depressive illness were recruited from mental health organizations within the community setting. Carers completed the General Health Questionnaire, Brief COPE, and Social Support Questionnaire. Multiple linear regression analysis revealed that 63% of the variance in psychological distress could be accounted for by adaptive and maladaptive coping styles and perceived quantity and satisfaction with social support. Satisfaction with social support (β = ?0.508, P < 0.001) and maladaptive coping (β = 0.369; P < 0.001) were significant predictors of psychological distress. These findings suggest that interventions should consider coping styles, specifically the interaction between maladaptive behaviours and enhancement of quality of support, to assist carers to manage psychological distress, especially earlier in the caring role.     

Informal carers of stroke survivors–factors influencing carers: A systematic review of quantitative studies

Purpose. Despite increasing evidence of adverse effects on informal carers of caring for stroke survivors, little is known about the characteristics of carers and survivors that influence carer outcomes. The purpose of this review is to summarize factors influencing outcomes in carers of stroke survivors.

Methods. A systematic review of studies identified from English language medicine, nursing and psychology databases from 1996 – 2006 was carried out.

Results. Thirty-nine studies were identified. Studies from Europe and the USA investigating negative carer outcomes dominated. Carer psychological characteristics and survivor disability were shown to influence carer outcomes. However, the diversity of carers and outcomes investigated and differences in study timing post-stroke make generalizations difficult.

Conclusions. Despite improvements in study design over the last two decades, atheoretical studies employing overlapping concepts and poorly defined participants still dominate. Future studies should have theoretical underpinning and should acknowledge the diversity of carers, survivors and their situations. In addition, future emphasis on positive carer outcomes may improve understanding of protective carer factors.     

Clinical notes for informal carers in palliative care: recommendations from a random patient file audit

Although palliative care aims to support family members and informal carers, current evidence suggests that high levels of unmet need persist, and that this population is challenging to work with. This study aimed to 1) measure the proportion of patients that have an informal carer, 2) describe the clinical notes data on existing needs and coping, 3) measure the completeness of assessment data recording, 4) appraise the utility of existing informal carers' sections in the patient files, and 5) make recommendations for improvement. An audit was conducted reviewing 145 closed patient files. Of these, 100 had identifiable informal carers (69.9%). Although patient data was complete, data was severely lacking on their informal carer. Diverse coping strategies were described, and the primary need was for finance and advice about state welfare payments (n=64). The findings suggest a need for files to identify and record informal carers as potentially distinct from family members, promote assessment data completion for informal carers on a par with that of patients, and to develop systematic approaches to systems that maximize utility and incorporate multiprofessional input into the development of clinical notes.     

The nature of sense making in caregiving for persons with multiple sclerosis

Objective. Sense making refers to the development of explanations for adversity. This study investigated the nature of sense making in multiple sclerosis (MS) carers and relations between it and care recipient illness, caregiving context, carer religious-spiritual beliefs and carer and care recipient adjustment.

Subjects. A total of 232 MS carers and their care recipients completed questionnaires.

Method. A questionnaire survey methodology was used to collect qualitative and quantitative data. Variables included: Demographics, caregiving context (caregiving duration, co-residency, carer-care recipient relationship, outside employment), care recipient illness (activities of daily living, number of symptoms, illness duration, course), sense making (anticipated sense making, number of sense making categories), carer and care recipient adjustment (positive states of mind, life satisfaction, anxiety, depression).

Results. Half the carers generated sense making explanations for their caregiving situation and 12 sense making themes emerged from this qualitative data. Over a third of those carers who could not make sense of their situation were able to anticipate comprehending it and the strength of this anticipation was related to greater life satisfaction. Carer sense making was related to having a religious-spiritual belief, fewer care recipient symptoms, marital status and it predicted life satisfaction after controlling for relevant covariates. Carer and care recipient sense making was positively correlated, and the sense making of one partner was positively related to life satisfaction of the other partner.

Conclusions. Findings chart the nature of sense making in MS caregiving and support the notion of collective sense making within dyads and the proposed beneficial links between sense making and adjustment.     

The positive impact of multiple sclerosis (MS) on carers: Associations between carer benefit finding and positive and negative adjustment domains

Purpose.?This study examined benefit finding in MS carers including the dimensionality of benefit finding, relations between carer and care recipient benefit finding, and the effects of carer benefit finding on carer positive and negative adjustment domains.

Method.?A total of 267 carers and their care recipients completed questionnaires at Time 1 and 3 months later, Time 2 (n?=?155). Illness data were collected at Time 1, and number of problems, stress appraisal, benefit finding, negative (global distress, negative affect) and positive (life satisfaction, positive affect, dyadic adjustment) adjustment domains were measured at Time 2.

Results.?Qualitative data revealed seven benefit finding themes, two of which were adequately represented by the Benefit Finding Scale (BFS) [1] (Mohr et al. Health Psychology 1999; 18: 376). Factor analyses indicated two factors (Personal Growth, Family Relations Growth) which were psychometrically sound and showed differential relations with illness and adjustment domains. Although care recipients reported higher levels of benefit finding than carers, their benefit finding reports regarding personal growth were correlated. The carer BFS factors were positively related to carer and care recipient dyadic adjustment. Care recipient benefit finding was unrelated to carer adjustment domains. After controlling for the effects of demographics, care recipient characteristics, problems and appraisal, carer benefit finding was related to carer positive adjustment domains and unrelated to carer negative adjustment domains.

Conclusion.?Findings support the role of benefit finding in sustaining positive psychological states and the communal search for meaning within carer?–?care recipient dyads.     

Carer experience of back pain is associated with adolescent back pain experience even when controlling for other carer and family factors

OBJECTIVES: The study objectives were (1) to determine if adolescent back pain is related to carer back pain; and (2) to examine whether other carer and family factors accounted for any such relationship. METHODS: Back pain experience was collected independently from 1608 fourteen-year-old adolescents and their care givers by questionnaire. Measures of back pain impact on carers were also collected (modified activities, missed work, sought professional help, took medication). Other carer factors examined were age, sex, smoking habits, depression, anxiety, and stress. Familial factors examined included income, stressful events, and family functioning. Odds ratios were calculated to describe familial associations with multivariate modeling used to examine the influence of other carer and family factors. RESULTS: Lifetime prevalence of back pain was 46.5% for adolescents and 72% for their carers. Having a carer with back pain increased the risk of back pain for adolescents, and this was magnified if both carers had back pain (odds ratio 1.61). Adolescent back pain was not associated with primary carer age, sex, depression, anxiety, or stress but was related to family stressful events. However, these other factors did not diminish the association between carer back pain and adolescent back pain. DISCUSSION: Carer experience of back pain is clearly associated with adolescent experience of back pain. Although other carer and family factors are also associated, the carer's back pain experience is not a surrogate measure of these other factors suggesting other genetic and behavioral mechanisms may be important for adolescent back pain development.     

Psychosocial and socio-demographic factors associated with outcomes for patients undergoing rehabilitation for chronic whiplash associated disorders: A pilot study

Purpose. Identify psychosocial and socio-demographic factors (measured prior to treatment) that were associated with post-treatment self-perceived pain and disability and two secondary outcomes: psychological distress, and return to work in patients undergoing multidisciplinary rehabilitation for chronic whiplash associated disorders (WAD).

Method. Interviews were conducted with 28 patients with chronic WAD at entry to and completion of an intensive rehabilitation program, and a telephone interview was carried out three months later. Participants completed pain and disability, and psychological distress questionnaires, at baseline and at both follow-ups. They also completed psychosocial questionnaires and provided socio-demographic information. The effect of each of the independent variables on the outcomes was first evaluated by simple regressions, and then subsequently by multiple regression analysis.

Results. Higher baseline pain and disability predicted higher pain and disability at both follow-ups (p < 0.001), and higher psychological distress at program completion (p = 0.003). Younger age (p = 0.028) and higher baseline psychological distress (p = 0.002) were associated with higher psychological distress three months post-rehabilitation. Greater social support at work was prognostic of return to work at program completion (p = 0.04).

Conclusions. Baseline pain and disability was the only factor that affected pain and disability post-rehabilitation. Psychosocial factors played a role in the prognosis of psychological distress and return to work.     

Stress and depression in family carers following traumatic brain injury: the influence of beliefs about difficult behaviours

OBJECTIVE: Difficult behaviours are significant contributors to the distress experienced by carers of people with a traumatic brain injury. This study investigated whether the beliefs carers hold about such behaviours also contribute to the distress. DESIGN: Questionnaire survey. PARTICIPANTS: Forty family carers recruited from Headway, a traumatic brain injury support organization. MAIN MEASURES: Zung's Self-Rating Depression Scale, Perceived Stress Scale, Social Support Questionnaire, a measure of the severity of difficult behaviours shown by the person cared for and two measures of carer beliefs about the behaviour (including the Controlling Beliefs Scale). RESULTS: Higher depression and stress scores were associated with more severe behaviours and less social support. Carer belief in their own ability to control the behaviours was associated with less stress. Belief that the behaviour was under the control of the person with traumatic brain injury and/or was motivated by hostile intentions was associated with more depression but less stress. Taken together, severity of behaviour and social support accounted for about 19% of the variance in both depression and stress scores. Carer beliefs accounted for another 5% of the depression scores, and another 11% of the stress scores. CONCLUSIONS: The results were consistent with the idea that carer beliefs about difficult behaviour contribute to carer distress, but longitudinal and treatment studies are needed to establish causality.     

Recovery from disability after stroke as a target for a behavioural intervention: Results of a randomized controlled trial

Purpose. Disability following stroke is highly prevalent and is predicted by psychological variables such as control cognitions and emotions, in addition to clinical variables. This study evaluated the effectiveness of a workbook-based intervention, designed to change cognitions about control, in improving outcomes for patients and their carers.

Method. At discharge, stroke patients were randomly allocated (with their carers) to a 5-week intervention (n = 103) or control (normal care: n = 100). The main outcome (at 6 months) was recovery from disability using a performance measure, with distress and satisfaction as additional outcomes.

Results. The intervention group showed significantly better disability recovery, allowing for initial levels of disability, than those in the control group, F(1,201) = 5.61, p = 0.019. Groups did not differ in distress or satisfaction with care for patients or carers. The only psychological process variable improved by the intervention was Confidence in Recovery but this did not mediate the effects on recovery.

Conclusions. A large proportion of intervention participants did not complete the workbook tasks. This was perhaps associated with the fairly low level of personal contact with workbook providers. The modest success of this intervention suggests that it may be possible to develop effective behavioural interventions to enhance recovery from disability in stroke patients.     

Carer mentoring: A mixed methods investigation of a carer mentoring service

Background

Worldwide with ageing populations, the numbers of informal carers are likely to increase. Although being a carer is often satisfying, it can be challenging and require support. Volunteer-provided carer mentoring services where carers are supported by volunteer mentors are one such intervention. However, little is known about the impact of mentoring, carers’ experiences or the mechanisms by which these schemes may work. Previous quantitative findings have been inconsistent suggesting a different, mixed methods approach using qualitative and quantitative methods may be valuable.

Objectives

Objectives were to explore two main questions: whether mentoring had a significant positive effect on carer mentees in terms of mental health, quality of life and confidence in caring and to explore how carers experience and perceive the process and benefits of mentoring. In addition, the study aimed to suggest possible mechanisms to understand how mentoring may benefit carers.

Methods and setting

Mixed methods (quantitative questionnaires and depth interviews) investigated an established mentoring service provided by volunteer mentors. During the study period, 28 carers received mentoring. Of these, 25 carers completed structured questionnaires both before and after mentoring, to determine whether mentoring had an impact on carer wellbeing and confidence in caring. Depth interviews were also undertaken with 11 purposively sampled carers to explore how carers experience and perceive the process and benefits of mentoring.

Results

Statistically significant improvements in carer anxiety (p < 0.001), depression (p < 0.001), quality of life (p = 0.02) and confidence in caring (p < 0.05 on all dimensions except one) were found. Depth interviews revealed that carers were very positive about mentoring and highlighted many benefits. Findings suggested emotional support, information provision, problem solving facilitation and gaining new perspectives may be mechanisms by which mentoring achieves positive outcomes. Mentor personal characteristics, experiences and training are possible facilitators of the process.

Conclusions

Carer mentoring services can be a valuable form of carer support that falls somewhere between formal and informal support. Adopting mixed methods permitted greater understanding of how mentoring may benefit carers and has implications for mentor recruitment and training. The fact that mentoring can be provided by volunteer mentors makes it an attractive, potentially cost-effective means of supporting carers.     

Factors associated with carer strain in carers of people with multiple sclerosis.

PURPOSE: To examine the factors associated with strain in carers of people with multiple sclerosis (MS). METHOD: People with MS were recruited from an MS management clinic. Demographic information, memory, executive function, attention/concentration, mood, disability and health of the person with MS, the carer's opinion of the care-recipient's memory and disability, and the carer's mood were recorded. A postal questionnaire to identify factors associated with carer strain was sent to carers. A further questionnaire was sent to carers to examine the association between memory problems in people with MS and carer strain. RESULTS: Problems with everyday memory and activities of daily living were found to be associated with carer strain. Strained carers perceived strain to be a consequence of the memory problems (p < 0.01). Aspects of the memory problems related to carer strain were the amount of time a carer could spend alone (p = 0.01), the carer's mood and less sympathetic feelings towards the person with MS (p < 0.05). Strained carers had more desire for other people to help the person with MS deal with the memory problems by themselves than carers who were not under strain (p = 0.03). CONCLUSION: Carer strain was associated with memory problems experienced by people with MS.     

Caring for a loved one with a malignant fungating wound

Purpose

Caring for a loved one with a malignant fungating wound is very challenging and causes extreme physical and psychological distress. The aim of this study was to explore the experiences of carers who care for a loved one with a fungating breast wound.

Method

To explore the lived experiences of carers, a methodological framework using Heideggerian hermeneutic phenomenology and semi-structured interviews was used. Seven carers were interviewed from January until November 2009.

Results

Having to deal with a situation of a loved one with a visible cancer was hard for all the carers. The visibility of the cancer was one of the most shocking aspects to deal with from the perspective of the patient and the carer. The presence of the visible wound and a cancer at an advanced stage contributed to a change in the relationship and extreme suffering for both the patient and the carer. Despite many problems such as wound odour and copious discharge from the wound, which was difficult to control, carers did their best to help their loved one with the wound. Gradually, the wound became the centre of the patient and carer’s life, and a great deal of time was spent trying to control the wound symptoms. All carers managed the wound on their own without help and advice from health care practitioners. For all of them, it was a major burden and they felt isolated.

Conclusion

This study contributes to an understanding that the care of women and their carers needs strategies that are integrated in palliative wound care that takes a holistic and empathic approach that responds to patients’ and carers’ psychosocial and emotional needs and a practical need for information to help carers assist in managing the wound-related symptoms.     

Patient mood and carer strain during stroke rehabilitation in the community following early hospital discharge

PURPOSE: Patient mood and carer stress were assessed for stroke patients in the community following early hospital discharge. METHOD: Patients had low Barthel Indices (13.0 (mean) +/- 4.9 (SD)) with high anxiety and depression scores, and carers had high stress scores, on starting rehabilitation. On starting rehabilitation, patient Barthel Indices correlated inversely with patient depression (r = -0.33, p < 0.02) and carer stress scores (r = -0.48, p < 0.001). RESULTS: During rehabilitation improvements occurred in patient Barthel Indices, patient anxiety scores and carer stress scores, but not in patient depression scores. Incremental increases in patient Barthel Indices during rehabilitation correlated with reductions in carer stress scores (r = -0.55, R2 = 29.4%, p < 0.001). Following early hospital discharge stroke patients display mood abnormalities which do not resolve during rehabilitation. CONCLUSION: Carer stress and patients depression scores are related to the severity of stroke-related disability. Strategies to address patient mood and carer stress should be present in community services providing early stroke rehabilitation.     

Risk Factors for Developing Prolonged Grief During Bereavement in Family Carers of Cancer Patients in Palliative Care: A Longitudinal Study

ContextFamily carers of palliative care patients report high levels of psychological distress throughout the caregiving phase and during bereavement. Palliative care providers are required to provide psychosocial support to family carers; however, determining which carers are more likely to develop prolonged grief (PG) is currently unclear.ObjectivesTo ascertain whether family carers reporting high levels of PG symptoms and those who develop PG disorder (PGD) by six and 13 months postdeath can be predicted from predeath information.MethodsA longitudinal study of 301 carers of patients receiving palliative care was conducted across three palliative care services. Data were collected on entry to palliative care (T1) on a variety of sociodemographic variables, carer-related factors, and psychological distress measures. The measures of psychological distress were then readministered at six (T2; n = 167) and 13 months postdeath (T3; n = 143).ResultsThe PG symptoms at T1 were a strong predictor of both PG symptoms and PGD at T2 and T3. Greater bereavement dependency, a spousal relationship to the patient, greater impact of caring on schedule, poor family functioning, and low levels of optimism also were risk factors for PG symptoms.ConclusionScreening family carers on entry to palliative care seems to be the most effective way of identifying who has a higher risk of developing PG. We recommend screening carers six months after the death of their relative to identify most carers with PG.     

Evaluation of a short-term group intervention for informal carers of patients attending a home palliative care service

Despite evidence of high psychological distress and unmet needs, evaluated interventions for informal caregivers in palliative care are few. This study involved an observational outcome evaluation of attendees, and a comparison group, in specialist home palliative care. The measures included carer psychological status and patient physical status at baseline, 8 weeks, and 20 weeks. Qualitative data were collected regarding content, satisfaction with, and impact of intervention. Process data described the uptake, resources, and group activity. The intervention combined informal multiprofessional teaching with facilitated peer exchange and support, and was delivered over 6 sessions of 90 minutes per week. The uptake rate was 25%; carers were less likely to accept if they were in paid employment (OR=0.26, P=0.06), and more likely to accept if they utilized avoidance coping (OR=1.13, P=0.04) or their patient had worse physical status (OR=2.1, P=0.03). Attendees described significant support and knowledge gains from the multiprofessional input and peer group. Most relied on social comparison processes to appraise their situation. Potential detection of significant effects on global psychological scores (i.e. anxiety, depression, and burden) using multivariate analysis was disallowed due to attrition. This acceptable and accessible intervention provided information and support; further outcome studies are needed for a range of interventions. Short-term interventions are unlikely to affect global psychological scores, and future evaluations should include additional time points of data collection to demonstrate support during attendance.     

The need for support services for family carers of people with motor neurone disease (MND): views of current and former family caregivers a qualitative study

Purpose: Family carers provide the majority of home-based care for people with motor neurone disease (MND). Carers’ need for, and use of, support services are not fully understood; this study aimed to explore, from a qualitative perspective, the views of current and former family carers of people with MND. Methods: A qualitative study was undertaken in Northwest England, using narrative interviews with current (18) and former (10) carers of a family member with MND. An optional longitudinal element involving diary completion was offered to the current carers. Data were analyzed using a thematic framework approach. Results: Carer’s needs vary, but encompass the provision of information and training, availability of respite care, counselling, and access to trained paid-for carers. Conclusions: There is need for a range of support services to be made available from which carers can select those most appropriate for them. Some support services are not always available for carers of this client group. There is a need for carers to access greater manual handling and training for physical care. Without sufficient support, carer burden can be overwhelming which may impact on the place of care of the patient and ultimately has implications for health and social care services.

Implications for Rehabilitation

• People with motor neurone disease have complex care needs with family carers providing the majority of home-based care.

• This study has shown there is a need for increased training in manual handling and physical care for family carers.

• Failure to properly support family carers increases the burden on them and if left unchecked may ultimately affect where the patient is cared for.

• A range of support services are needed for family carers with clear signposting for them to select those most appropriate for their individual needs.

     

Factors associated with carer strain in carers of people with multiple sclerosis

Purpose : To examine the factors associated with strain in carers of people with multiple sclerosis (MS). Method : People with MS were recruited from an MS management clinic. Demographic information, memory, executive function, attention/concentration, mood, disability and health of the person with MS, the carer's opinion of the care-recipient's memory and disability, and the carer's mood were recorded. A postal questionnaire to identify factors associated with carer strain was sent to carers. A further questionnaire was sent to carers to examine the association between memory problems in people with MS and carer strain. Results : Problems with everyday memory and activities of daily living were found to be associated with carer strain. Strained carers perceived strain to be a consequence of the memory problems (p<0.01). Aspects of the memory problems related to carer strain were the amount of time a carer could spend alone (p = 0.01), the carer's mood and less sympathetic feelings towards the person with MS (p<0.05). Strained carers had more desire for other people to help the person with MS deal with the memory problems by themselves than carers who were not under strain (p = 0.03). Conclusion : Carer strain was associated with memory problems experienced by people with MS.     

Characteristics and views of family carers of older people with heart failure

AIMS: to explore the characteristics and views of the family carers of older people with heart failure. METHOD: 213 family carers of heart failure patients >60 years were recruited from UK general practitioner (GP) practices. Carer strain, quality of life (QOL) and service satisfaction questionnaires were completed every 3 months for 2 years, as well as 16 interviews with patients and carers, and 9 focus groups with health care professionals. RESULTS: 76% of carers were female, 70% were >60 years and 73% were spousal carers. Predictors of carer strain were symptoms of depression, age and patient NYHA. Predictors of lower QOL were: spousal carer; 2+ health conditions and symptoms of depression. Qualitative findings related to the change in circumstances, impact of responsibilities and health conditions of the family carers. CONCLUSION: carers were mainly older women, often experiencing multiple health conditions. Addressing the practical and emotional support required presents a challenge for specialist palliative care in responding to calls for increased involvement in heart failure. A shared care model with liaison between specialist heart failure nurses, cardiologists, primary care teams and hospice services is advocated.