The following resources examine the psychological impact of caring; and psychological interventions aimed at improving well-being.
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Dementia rates are growing (WHO, 2017) and as dementia is associated with a loss of independence, carers are required. Caring for a dementia patient places great demands on the carer’s resources (WHO, 2017). Previous research has indicated that whilst carers are at increased risk of poor mental and physical health (Diener & Chan, 2011; Mahoney, Regan, Katona, & Livingston, 2005; Mausbach, Patterson, Rabinowitz, Grant, & Schulz, 2007), there are some effective protective measures against these increased risks (Cooper et al., 2012; Elvish, Lever, Johnstone, Cawley, & Keady, 2013; Kaufman, Kosberg, Leeper, & Tang, 2010). Aims: This study aimed to evaluate a dementia support group, in relation to protective measures including social and emotional support, in a real-life rural setting from a carers’ perspective. Method: Fourteen informal carers of dementia patients were interviewed about their experiences of attending dementia support groups. The interviews were transcribed verbatim and subject to thematic analysis. Findings: The analysis showed that attendance to the support group was associated with subjective well-being and that social support provided by the group was both stimulating and supportive for the carers. Participants valued the opportunity to share their experiences of being a carer with fellow group members and finding out about resources. Frequently, participants reported that the time period surrounding their loved one receiving a diagnosis of dementia was traumatic and they needed time to adjust to their new circumstances before attending a support group. Conclusions: Implications for wider employment of support groups as a format of support for carers are discussed.
Objectives Recently, research has focused on understanding the needs of persons with early‐onset dementia and their family caregivers who often experience stigmatic beliefs. However, to date, research has not provided a thorough and deep understanding of the stigma formation process and its implications for this population. Thus, the aim of the present study was to explore the stigma formation process as experienced by family members as informal caregivers of persons with early‐onset dementia, and professionals as formal caregivers who are involved in the development, management and provision of services. Method We conducted three focus groups with 16 participants, including spouses of a person with early‐onset dementia and professionals. The focus groups’ transcripts were analysed following a thematic analysis procedure. Results Results indicated that both family members and professionals encounter stigmatic experiences because of their association with younger persons with dementia. Lack of knowledge emerged as the main antecedent and emotional burden as the main consequence of stigma. Conclusion Stigmatic experiences emerged as a pervasive and complex phenomenon among formal and informal caregivers of persons with early‐onset dementia, suggesting the need to developing a comprehensive and integrated approach to reduce them at the individual, professional and societal levels.
Effective and accessible interventions for indicated prevention of depression are necessary and lacking, especially for informal caregivers. Although telephone-based interventions could increase the accessibility for caregivers, randomized controlled trials are scarce, with no examination of prevention to date. Moreover, the efficacy of specific therapeutic components in preventive cognitive-behavioral programs is unknown. The main objective of this study was to evaluate the efficacy of a telephone-administered psychological preventive intervention in informal caregivers with high depressive symptoms. A total of 219 caregivers were randomized to a cognitive-behavioral conference call intervention (CBCC, n = 69), a behavioral-activation conference call intervention (BACC, n = 70), or a usual care control group (CG, n = 80). Both interventions consisted of five 90-minute group sessions. At the post-intervention, incidence of depression was lower in CBCC and BACC compared to CG (1.5% and 1.4% vs. 8.8%). Relative risk was 0.17 for the CBCC and 0.16 for the BACC, and the number-needed-to-treat was 14 in both groups. Depressive symptoms were significantly lower in BACC and BACC groups compared to CG (d = 1.16 and 1.29), with no significant differences between CBCC and BACC groups. The conference call intervention was effective in preventing depression and the behavioral-activation component (BACC) was comparable to the CBCC intervention.
Background: Patients' negative illness perceptions and beliefs about cardiac rehabilitation (CR) can influence uptake and adherence to CR. Little is known about the interpartner influence of these antecedent variables on quality of life of patients with coronary artery disease (CAD) and their family caregivers. The aims of the study were: 1) to assess differences in illness perceptions, beliefs about CR and quality of life between patients with CAD and their family caregivers upon entry to a CR programme and at 6 months follow-up; and 2) to examine whether patients' and caregivers' perceptions of the patient's illness and beliefs about CR at baseline predict their own and their partner's quality of life at 6 months. Methods: In this longitudinal study of 40 patient-caregiver dyads from one CR service, patients completed the Brief Illness Perception Questionnaire and Beliefs about Cardiac Rehabilitation Questionnaire at baseline and 6 months; and caregivers completed these questionnaires based on their views about the patient's illness and CR. The Short-Form 12 Health Survey was used to assess patients' and caregivers' perceived health status. Dyadic data were analysed using the Actor-Partner Interdependence Model. Results: Most patients (70%) were men, mean age 62.45 years; and most caregivers (70%) were women, mean age 59.55 years. Caregivers were more concerned about the patient's illness than the patients themselves; although they had similar scores for beliefs about CR. Patients had poorer physical health than caregivers, but their level of mental health was similar. Caregivers' poorer mental health at 6 months was predicted by the patient's perceptions of timeline and illness concern (i.e. partner effects). Patient's and caregiver's illness perceptions and beliefs about CR were associated with their own physical and mental health at 6 months (i.e. actor effects). Conclusions: Overall, the patients and caregivers had similar scores for illness perceptions and beliefs about CR. The actor and partner effect results indicate a need to focus on specific illness perceptions and beliefs about CR, targeting both the individual and the dyad, early in the rehabilitation process to help improve patients and caregivers physical and mental health (outcomes).
Family caregivers of people with dementia (PWD) have a heavy care burden. Affiliate stigma is the stigma internalized by individuals associated with PWD. Limited research has addressed the affiliate stigma among caregivers of PWD and its influence on caregiver burden. Thus, our study investigated the burden of caregivers of PWD and its relationship with affiliate stigma. In addition, we examined the factors related to affiliate stigma. This cross-sectional study was conducted in a general hospital in Taiwan. We recruited 270 PWD and their family caregivers from the outpatient department. Relevant demographic and clinical assessment data of the patients and caregivers were evaluated. Regression analysis was performed to examine the factors associated with affiliate stigma. In total, 23.7% of the family caregivers had depression and 37.4% had anxiety. Male caregivers had higher levels of anxiety and heavier care burdens related to affiliate stigma compared with female caregivers. Moreover, characteristics such as younger age and low levels of dependence in daily activities among PWD were associated with increased affiliate stigma. A higher family caregiver burden was related to more severe affiliate stigma. Interventions for decreasing the family caregiver burden might reduce the effect of affiliate stigma.
The role of informal caregiver of cancer patients is considered a situation of chronic stress that could have impact on cognitive functioning. Our aim was to evaluate differences in perceived stress, subjective memory complaints, self-esteem, and resilience between caregivers and non-caregivers, as well as the possible mediational role of burden in caregivers. The sample was composed of 60 participants divided into two groups: (1) Primary informal caregivers of a relative with cancer (CCG) (n = 34); and (2) non-caregiver control subjects (Non-CG) (n = 26). All participants were evaluated through a battery of tests: Socio-demographic questionnaire, subjective memory complaints questionnaire (MFE-30), Rosenberg Self-Esteem Scale, resilience (CD-RISC-10), and perceived stress scale (PSS). The CCG group also completed the Zarit burden interview. Results indicated that CCG displayed higher scores than Non-CG in MFE-30 (p = 0.000) and PSS (p = 0.005). In the CCG group, Pearson correlations indicated that PSS showed a negative relationship with resilience (p = 0.000) and self-esteem (p = 0.002) and positive correlation with caregiver’s burden (p = 0.015). In conclusion, CCG displayed higher number of subjective memory complaints and higher perceived stress than Non-CG, whereas no significant differences were obtained on self-esteem and resilience. These results could aid in designing new intervention strategies aimed to diminish stress, burden, or cognitive effects in informal caregivers of cancer patients.
Objective Cancer diagnosis affects patients, their families, and their caregivers in particular. This study focused on the validation of the CareGiver Oncology Quality of Life (CarGOQoL) questionnaire in Portuguese caregivers of patients with multiple myeloma, from the caregiver's point of view. Method This was a cross-sectional study with 146 caregivers of patients with multiple myeloma from outpatient medical oncology and clinical hematology consultations from five hospitals in north and central Portugal. Participants were assessed on quality of life (QoL), psychological morbidity and social support. Result The Portuguese version maintains 17 of the original 29 items version, maintaining general coherence and a dimensional structure that is clinically interpretable. Reliability findings indicated good internal consistency for the total scale (0.86) and respective subscales (0.75 to 0.88), which is in agreement with the alpha values from the previous CarGOQoL validation study for the corresponding subscales (0.74 to 0.89) and total scale (0.90). Significance of results The CarGOQoL is a reliable and valid tool for clinical trials and intervention programs to assess QoL in caregivers of myeloma patients. Future studies should validate the adapted version in caregivers of other types of cancer patients including other chronic diseases.
Objective: To identify barriers and facilitators to help seeking for a dementia diagnosis from the perspective of carers and people with dementia.Design: A systematic review of the literature was conducted according to the PRISMA guidelines (PROSPERO protocol registration CRD42018092524). Nine electronic databases were searched for qualitative, quantitative, and mixed methods primary research studies. Two independent reviewers screened titles and abstracts, full texts of eligible studies, and conducted quality appraisal of included articles. A convergent qualitative synthesis approach was used. Results: From 7496 articles, 35 papers representing 32 studies from 1986 to 2017 were included. Studies originated from 13 countries across 4 continents. Barriers and facilitators were reported predominantly by carers. A small number of studies included people with dementia. Barriers included denial, stigma and fear, lack of knowledge, normalization of symptoms, preserving autonomy, lack of perceived need, unaware of changes, lack of informal network support, carer difficulties, and problems accessing help. Facilitators included recognition of symptoms as a problem, prior knowledge and contacts, and support from informal network. Conclusions: Studies from a 30-year period demonstrated that barriers to help seeking persist globally, despite increasing numbers of national dementia policies. Barriers and facilitators rarely existed independently demonstrating the complexity of help seeking for a diagnosis of dementia. Multiple barriers compounded the decision-making process and more than one facilitator was often required to overcome them. Multi-faceted interventions to reduce barriers are needed, one approach would be a focus on the development of dementia friendly communities to reduce stigma and empower people with dementia and carers.
Background: Previous cognitive behavioral therapies for informal caregivers (ICs) have produced negligible effects. The purpose of this study was to evaluate, in a randomized controlled trial, the efficacy of Emotion Regulation Therapy adapted for caregivers (ERT-C) on psychological and inflammatory outcomes in psychologically distressed ICs and the cancer patients cared for. Methods: A total of 81 ICs with elevated psychological distress were randomly assigned to ERT-C or a waitlist condition and assessed pre-, mid-, and post-treatment. In 52 cases, the patient cared for by the IC was included. Patients did not receive ERT-C. Both the ERT-C and waitlist groups were followed 3 and 6 months post-treatment. Data were analyzed with multilevel models, and P values were two-sided. Results: Compared with ICs in the waitlist condition, ICs in the ERT-C condition experienced medium to large statistically significant reductions in psychological distress (Hedge's g = 0.86, 95% confidence interval [CI] = 0.40 to 1.32, P < .001), worry (g = 0.96, 95% CI = 0.50 to 1.42, P < .001), and caregiver burden (g = 0.53, 95% CI = 0.10 to 1.99, P = .007) post-treatment. No statistically significant effects were found for rumination (g = 0.24, 95% CI = -0.20 to 0.68, P = .220). Results concerning caregiver burden were maintained through 6 months follow-up. Although the effects on psychological distress and worry diminished, their end-point effects remained medium to large. No statistically significant effects on systemic inflammation were detected (C-reactive protein: g = .17, 95% CI = 0.27 to 0.61, P = .570; interleukin-6: g = .35, 95% CI = -0.09 to 0.79, P = .205; tumor necrosis factor-alpha: g = .11, 95% CI = 0.33 to 0.55, P = .686). Patients whose ICs attended ERT-C experienced a large increase in quality of life post-treatment (g = 0.88, 95% CI = 0.18 to 1.58, P = .017). Conclusions: To our knowledge, this is the first randomized controlled trial evaluating the efficacy of ERT-C for ICs. Given the previous disappointing effects of other cognitive behavioral therapies for this population, the present findings are very encouraging. Identifying ICs with elevated psychological distress and providing them with relevant psychotherapy appears an important element of comprehensive cancer care.
Extract: Caring for an older family member can be a challenging and stressful experience, and there is a need to better support family carers in their role.(1) Drawing on a rapidly growing body of research conducted with various population groups, (2) there is reason to suggest that psychological interventions that target self‐compassion could be particularly relevant in supporting family carers of older adults. Yet, research exploring self‐compassion within this population is currently very limited, (3) and the potential theoretical underpinnings of self‐compassion as an intervention and/or form of support for this group have not been explored. Within this paper we outline, for the first time, a conceptual rationale for why self‐compassion is an applicable intervention target for family carers of older adults. In doing so, we situate the discussion within current understanding and evidence about family caregiving stress and use an emotion regulation framework to explore the mechanism of change though which self‐compassion may positively influence carer health outcomes. This conceptual commentary is intended to encourage and guide research in a new and rapidly developing area and, to this end, we provide a series of considerations for future research to extend current understanding....
Informal caregivers of persons with dementia often report high levels of anxiety, depression and burden. Nonetheless, other less evaluated psychological symptoms might also influence their health-related quality of life (HRQoL). The aim of this study was to comprehensively analyse other psychological symptoms and their influence on the health-related quality of life of informal caregivers. Fifty-four informal women caregivers and fifty-six women non-caregivers were recruited to participate in the study. Psychological symptoms were assessed using the Symptom Check-List-90-Revised (SCL-90-R) questionnaire and the HRQoL with the EuroQoL-Five Dimensions and Three Levels (EurQoL-5D-3L) questionnaire. Significant between-group differences were found in the majority of scales in the SCL-90-R questionnaire (p < 0.01) and caregivers also reported a worse HRQoL than non-caregivers (p < 0.05). Several psychological symptoms such as obsession-compulsive (beta = 0.47), hostility (beta = 0.59), and somatization (beta = 0.49) had a significant impact on caregivers' HRQoL (R-2 explained between 0.17 and 0.30 of the variance). Caregivers are at a higher risk of suffering other psychological symptoms and show a moderate-high level of psychiatric morbidity, which therefore explains the poorer HRQoL outcomes. Supporting interventions should be provided to mitigate these psychological symptoms in order to improve their general distress and HRQoL.
Introduction Cognitive behavioural family intervention (CBFI) may be an effective brief psychosocial intervention for people diagnosed with severe mental illness (SMI) and their families. No systematic review has summarized the effectiveness of CBFI. Aim This review aimed to systematically examine the trial evidence of the effectiveness of CBFI versus treatment as usual (TAU) on improving the outcomes of people diagnosed with SMI and their families. Method Eligible randomized controlled trials were identified from nine databases. Three investigators independently took part in selection of articles, data extraction and risk assessment. Pooled treatment effects were computed using random-effects models. Results Four studies consisting of 524 participants were included. The risk of bias was low–unclear in most areas. The pooled CBFI effect on four service user outcomes including overall positive symptoms, delusions, overall negative symptoms and general psychopathology was significantly improved at post-treatment, compared with TAU, whereas effects on hallucinations and insight were equivocal. Discussion The findings reveal that CBFI is superior to TAU in treating positive and negative symptoms immediately following the intervention. Implications for Practice Mental health nurses may practise CBFI to enrich the psychiatric nursing service and promote nurse-led intervention. However, there is currently no substantial evidence that the intervention is effective over the longer term.
Background: Given the importance of ethnic culture in family caregiving and recent Chinese immigrant population growth, this study explored effects of multiple filial piety traits-filial expectation, self-rated filial performance, and filial discrepancy-on psychological well-being of Chinese immigrants who care for older parents (adult-child caregivers) in the United States. Methods: This study used cross-sectional data from 393 Chinese immigrant adult-child caregivers in the Greater Chicago area from the 2012-2014 Piety study. Multivariate negative binomial and linear regression analyses tested effects of filial expectation, self-rated filial performance, overall filial discrepancy, and discrepancies in six filial domains (respect, bringing happiness, care, greeting, obedience, and financial support) on psychological well-being indicators: depressive symptoms and stress. Results: Adult-child caregivers reported high filial expectation and self-rated performance, and expectation was higher than performance. High filial expectation and self-rated performance were significantly associated with better psychological well-being; Overall filial discrepancy and two emotional-support domain discrepancies (respect, greeting) were associated with poor psychological well-being. Conclusions: Findings suggest that filial expectation, self-rated filial performance, and filial discrepancy are important in shaping Chinese adult-child caregivers' psychological well-being. Researchers and practitioners should incorporate these aspects of filial piety in future research and intervention development for this population.
Background: Informal caregivers of palliative patients show higher levels of depression and distress compared with the general population. Fegg’s (2013) existential behavioural therapy was shortened to two individual 1-h sessions (short-term existential behavioural therapy). Aim: Testing the effectiveness of sEBT on psychological symptoms of informal caregivers in comparison with active control. Design: Randomised controlled trial. Setting/participants: Informal caregivers of palliative in-patients. Methods: The primary outcome was depression; secondary outcomes were anxiety, subjective distress and minor mental disorders, positive and negative affect, satisfaction with life, quality of life and direct health care costs. General linear mixed models allow several measurements per participant and change over time. Reasons for declining the intervention were investigated by Rosenstock’s Health Belief Model. Results: Overall inclusion rate was 41.0%. Data of 157 caregivers were available (63.1% females; mean age: 54.6 years, standard deviation (SD): 14.1); 127 participants were included in the main analysis. Participation in sEBT or active control was not significantly associated with post-treatment depression. Outcomes showed prevailingly significant association with time of investigation. Self-efficacy, scepticism of benefit of the intervention, belief of better coping alone and support by family and friends were significant factors in declining participation in the randomised controlled trial. Conclusion: Inclusion rate was tripled compared with a previously evaluated longer EBT group intervention. By shortening the intervention, inclusion rate was traded for effectiveness and the intervention could not impact caregivers’ psychological state. Early integration of sEBT and combination of individual and group setting and further study of the optimal length for caregiver interventions are suggested.
Introduction Internalized stigma is prevalent among patients diagnosed with schizophrenia. Their family caregivers (FGs) also suffer from internalized stigma, but limited studies have addressed the issue. Aim The aim of this study was to determine the severity of internalized stigma and its correlates among FGs of patients diagnosed with schizophrenia in Changsha, Hunan, China. Methods A consecutive sample of 299 FGs was recruited at the psychiatric outpatient department of a tertiary hospital in Changsha. This study explored the relationships between internalized stigma and potential factors. Results Nearly 50% of the FGs perceived mild internalized stigma, 24% of the FGs reported moderate level, and 6% had a severe level. Internalized stigma was associated with patients’ characteristics (severity of illness) and FGs’ characteristics (hope, social support, passive coping, age, education background, residence with the patient, caring for a male or a young patient and difficulty in supervising medication). Discussion and implications for practice Informative and psychosocial interventions based on education and contact for FGs such as enhancing mental health literacy programs, cognitive therapies and group psychoeducation can provide FGs with a better understanding of schizophrenia and to promote hope, active coping and social support.
Background Family education programs (FEPs) target caregiving-related psychological distress for carers of relatives/friends diagnosed with serious mental health conditions. While FEPs are efficacious in reducing distress, the mechanisms are not fully known. Peer group support and greater mental health knowledge are proposed to reduce carers' psychological distress by reducing stigmatising attitudes and self-blame, and strengthening carers' relationship with their relative. Methods Adult carers (n = 1016) who participated in Wellways Australia's FEP from 2009 to 2016 completed self-report questionnaires at the core program's start and end, during the consolidation period, and at a 6-month follow-up. Those who enrolled early completed questionnaires prior to a wait-list period. We used linear mixed-effects modelling to assess the program's effectiveness using a naturalistic wait-list control longitudinal design, and multivariate latent growth modelling to test a theory-based process change model. Results While there was no significant change over the wait-list period, psychological distress, self-blame and stigmatising attitudes significantly decreased, and communication and relationship quality/feelings increased from the core program's start to its end. Changes were maintained throughout the consolidation period and follow-up. Peer group support significantly predicted the declining trajectory of distress. Peer group support and greater knowledge significantly predicted declining levels of self-blame and stigmatising attitudes, and increasing levels of communication. Conclusions This is the first study to quantitatively validate the mechanisms underlying the effect of FEPs on carers' psychological distress. Peer group support is key in modifying carers' appraisals of their friend/relatives' condition. Continued implementation of FEPs within mental health service systems is warranted.
OBJECTIVES: Hepatic encephalopathy (HE) is common in advanced cirrhosis and is characterized by marked neuropsychiatric abnormalities. However, despite its severity and effects on brain function, the impact of HE on psychological status of patients has not been adequately assessed. The aim of this study was to evaluate the effect of HE on psychological status of patients and their informal caregivers. METHODS: Fifteen patients with cirrhosis and episodic or persistent HE and their corresponding informal caregivers were included. Semistructured interviews were performed in patients and caregivers. Quality of life (QoL) was assessed by the short-form 36 in both patients and caregivers, and the Zarit burden score was measured in caregivers. The analysis of interviews was performed using qualitative methodology. RESULTS: HE causes a major psychological impact on patients with HE. The first episode of HE caused a very significant impact that was reported with deep feelings, mainly of fear, anger, misery, anxiety, and sorrow, which persisted with time. Symptoms causing more psychological impact on patients were impaired ability to walk and speak. All effects were associated with a marked impairment in QoL. The psychological impact was also marked in caregivers who had a major burden, as assessed by the Zarit score. Moreover, QoL, particularly the mental component score, was markedly impaired in caregivers in intensity similar to that of patients. DISCUSSION: HE has a profound psychological impact on patients and their informal caregivers, associated with a marked negative influence on QoL. The psychological effects of HE on patients and caregivers should be evaluated and treated.
Neurodegenerative diseases such as Parkinson's and dementia are highly prevalent worldwide. People who suffer from these disorders often receive in-home care and assistance from family members, who must dedicate a considerable amount of time to the care recipient. The study of family caregivers' psychosocial adjustment to the degenerative processes of both conditions is of interest due to the implications for the quality of life of both the care receiver and the caregiver, as well as other family members. This study compares the psychosocial adjustment of family members who care for people with dementia and Parkinson's disease and identifies the main sociodemographic variables that affect the processes of adjustment to both conditions. To this end, the Psychosocial Adjustment to Illness Scale (PAIS-SR) and a sociodemographic form were administered to 157 family caregivers in Navarre, Spain. The results show that adjustment to the disease in family caregivers of people with Parkinson's disease and dementia is, in general, satisfactory and related to variables such as place of residence, income, and employment status. The illness itself (Parkinson's or dementia), however, is found to be the most influential variable in the level of psychosocial adjustment.
Objective: to identify factors associated with the presence of suicidal ideation in caregivers of stroke survivors. Methods: cross-sectional survey conducted with 151 primary informal caregivers. The Depression Anxiety and Stress Scale-21 and a questionnaire were used to evaluate the presence of thoughts of suicidal ideation, whose data were analyzed by descriptive and inferential statistics. Results: most caregivers had normal levels of depression (76.8%), anxiety (76.2%) and stress (79.5%), and showed no thoughts of suicidal ideation (70.9%). The correlation between scales showed that thoughts of suicidal ideation rise proportionally to the increase of anxiety, depression and stress levels. Conclusion: it was observed that high levels of depression, anxiety and stress favored the increased frequency of suicidal thoughts among caregivers of stroke survivors.
Background: Informal caregivers of people suffering from depressive disorders go through a psychological recovery process. This process is dynamic, deep, catalyzed by hope and optimism and characterized by stages from which specific needs ensue. This study aimed to describe the stages of the psychological recovery process and the level of optimism among informal caregivers of psychiatric inpatients suffering from depressive disorders in order to provide adapted nursing support and psychoeducation and facilitate a patient's own recovery. Methods: A descriptive exploratory study was conducted using a convenience sample of 29 informal caregivers. Participants filled out a sociodemographic questionnaire, a specially adapted Stages of Recovery Instrument (STORI) and the Life Orientation Test-Revised (LOT-R). Results: A mean optimism score of 16.41 showed that informal caregivers are close to the level of the general European population. The sample included all the stages of the recovery process, with 34.5% of participants being in the growth stage. Informal caregivers' stages in the recovery process were negatively associated with the patient's length of illness (Rho = -.683, p = .000) and positively associated with the caregivers' level of optimism (Rho = .564, p = .001). Conclusion: During the inpatient treatment of a close relative suffering from a depressive disorder, informal caregivers go through an individual psychological recovery process involving several stages. In addition to caring for inpatients, nurses are encouraged to meet and support caregivers as soon as possible in their individual recovery process. Furthermore, the development of a suitably adapted clinical tool would facilitate the assessment of the informal caregiver's stage in the recovery process within care units. A multidisciplinary approach is needed in this domain.
Introduction: Since the incorporation of women into the world of work, together with the progressive ageing of the population and the increase of chronic diseases, there is an alteration in the role of the caregiver, due to the physical, work and family burden it bears, emotional conflicts and with other family members. Mutual aid can be an effective alternative to promoting the well-being of caregivers, as well as their families and dependents. Objective: To know the characteristics of self-help groups for family caregivers and their influence on caregivers, the dependent and family health. Methodology: Systematic review. The search strategy included the Pubmed, Scopus, Psycinfo, Eric, Cochrane plus and CSIC databases; selecting scientific articles in either Spanish, Catalan, English, Portuguese or French, for the last 10 years. Results: 12 articles related to the study topic were selected. All studies show that participation in these groups can improve the physical-psychological well-being, the health of caregivers and, at the same time, reinforce their sense of social support, although there is a lack of studies in our environment, with a size higher quality sample. Conclusions: Caregivers benefit from participating in self-help groups. Therefore, they should become a routine component of the family caregiver.
Purpose: Patients with pancreatic cancer have extremely high unmet psychological and physical needs. Family carers of these patients have even higher levels of distress than patients. Our purpose was to assess the feasibility and acceptability of a counselling intervention in patients diagnosed with pancreatic cancer and their carers. Methods: We conducted a single-arm feasibility study of the PREPARES (Patients and RElatives affected by PAncreatic cancer: Referral, Education and Support) pilot intervention. Patient and carer participants received up to nine counselling sessions delivered by a trained nurse via telephone and/or telehealth technology. The intervention, informed by self-efficacy theory, involved components to assess and address care needs, and provide feedback to clinicians. Feasibility was measured using participation and retention rates. Participants completed semi-structured interviews at the end of the intervention about acceptability. These were analysed using thematic analysis. Results: Twelve people participated: five patients and seven carers (38% and 50% participation rates respectively). Most participants (eight) completed all nine counselling sessions; two chose to receive fewer sessions and two were discontinued requiring more intensive psychiatric support. The intervention was highly acceptable. Participants unanimously preferred the telephone over video-conferencing and to receive counselling separately from their carer/patient. The main perceived benefits were emotional support, the nurse-counsellors’ knowledge, care coordination and personalised care. Suggested improvements included a welcome pack about their nurse-counsellor and that sessions should continue beyond nine sessions if required. Conclusions: The PREPARES intervention was feasible and highly acceptable. This low-cost intervention provided much-needed support to people affected by this devastating disease.
Informal caregivers (ICs) are integral to care provided to patients facing life-threatening or incurable illnesses. This responsibility causes considerable burden, as approximately one half of ICs report clinically significant symptoms of depression and/or anxiety that persist when left untreated. Psychosocial interventions containing efficacious treatment principles (e.g., cognitive behavior therapy [CBT]) show disappointing results in reducing anxiety and depression in ICs. This may reflect failure of these interventions to specifically target crucial mechanisms underlying the central feature of distress caused by the patient's illness-notably, perseverative negative thinking (PNT). Emotion Regulation Therapy (ERT) is an efficacious CBT developed to explicitly target mechanisms underlying PNT and the emotional concomitants that arise in response to stressful situations. This open trial was conducted to evaluate the acceptability and initial efficacy of ERT adapted to the experience of cancer ICs (ERT-C). Thirty-one ICs provided informed consent and completed eight weekly individual sessions of ERT-C. Participants completed self-report measures of depression and anxiety symptoms, PNT, emotion regulation deficits, and caregiver burden before and after treatment. ERT-C was well tolerated as indicated by 22 treatment completers and feedback provided in exit interviews. ICs demonstrated reduced depression and anxiety symptoms, PNT, and emotion regulation deficits with moderate to large effect sizes (Hedge's g range: 0.36-0.92). Notably, caregiver burden was not reduced but ICs expressed more ability to confront caregiving-related challenges. Findings offer promising but preliminary support for ERT-C as a conceptual model and treatment modality for distressed cancer ICs.
Background: Patients with heart valve disease need to receive long-term care from their family members after surgical valve replacement. Thus, family caregivers should have adequate self-efficacy for patient care. Objectives: This study examined the effects of the family-centered empowerment model (FCEM) on self-efficacy and self-esteem among the family caregivers of patients with prosthetic heart valve. Methods: In this quasi-experimental study, forty patients together with one of their family caregivers were consecutively recruited and allocated to an intervention or a control group. The FCEM was used in three to five sessions for patients in the intervention group. Besides, we sent their family caregivers educational cards containing the same educations provided to their patients. Finally, an educational session was held for family caregivers in which their questions were answered and each of them was provided with an educational booklet containing the same materials as the educational cards. Patients and their family members in the control group received routine care. Self-efficacy and self-esteem of family caregivers were assessed before, 1 week, and 1.5 months after the intervention. Data analysis was performed through the independent-samples t-test and the repeated measures analysis of variance. Results: Before the intervention, the mean scores of self-efficacy in the control and the intervention groups were 26.68 ± 4.79 and 26.79 ± 5.49, whereas the mean scores of self-esteem in these groups were 33.74 ± 4.55 and 33.84 ± 4.72, respectively. None of the between-group differences were significant. After the intervention, the mean scores of self-efficacy and self-esteem in the intervention group were significantly greater than the control group (37.32 ± 2.68 versus. 29.89 ± 2.20 and 36.26 ± 3.66 versus. 29.26 ± 5.84; P < 0.05). Conclusion: The use of the FCEM promotes self-efficacy and self-esteem among the family caregivers of patients with prosthetic heart valve.
Background: Several studies show the effectiveness of face-to-face interventions with families in improving the prognosis of patients with severe psychiatric disorders and their relatives; however, the effectiveness of online interventions is poorly understood. The current study aims to provide an overview of evidence for the effectiveness of online treatments (web/app) for patients with severe psychiatric disorders and their families.; Method: We performed a systematic review of online treatments for informal family caregivers of patients with a severe psychiatric disorder. The study psychological interventions had to have been administered in an exclusively online format (app, internet) and aimed at families of patients with severe mental disorder (at least one of first episode psychosis, schizophrenia, schizoaffective, bipolar disorder, and psychotic disorder).; Results: Of a total of 1331 articles, we identified 9 viable studies; 4 randomized clinical trials, and 5 nonrandomized clinical studies. The present study is the first systematic review in this area. Online interventions were well accepted, with good adherence and satisfaction among the caregivers and patients and improved the symptoms of both caregivers and patients.; Limitations: Clinical and methodological diversity of the studies.; Conclusions: Burden improved, and perceived stress decreased in families. Moreover, the severity of positive symptoms decreased and fewer hospitalizations were recorded in patients than in the control group. Therefore, online interventions are a promising therapeutic approach for patients with severe mental disorder and their families. However, more studies-particularly randomized clinical trials-are needed in this area.
Introduction: Dementia is considered as a serious threat for over 65years old population, because of its high prevalence rates. Dementia with a complex and multifaceted nature has negative effects on patients, family members, and their caregivers' psychological health and socioeconomic status. The current qualitative study is designed to investigate the stigma phenomenon to dementia in Iranian population. Methods: This qualitative research was conducted by the descriptive phenomenological method. In order to analyze the data, the Colaizzi's descriptive phenomenological method was used. The target population consisted of all patients with dementia and their family members in neurological clinics of Tehran. We interviewed with patients and one of the main family members until data saturation. Participants included the main family members (spouse and children) of people with dementia (nine women and six men) who were selected by a nonrandom purposeful sampling method. Results: Two main themes emerged from data analysis: dysfunctional beliefs and negative social attitudes. Each main theme integrates the classes and clusters which are constituted by formulated meanings. Conclusion: Dimensions of stigma, such as dysfunctional beliefs and negative social attitudes, in addition to undesirable effects on patients and caregivers lives, is considered as a serious obstacle to effective caring and providing a good quality of life. It can be concluded that, higher levels of awareness, management, and coping with this powerful phenomenon are capable of preventing, rehabilitation, and improving the psychosocial health in elderly population.
Background: Providing care often causes negative reactions and psychological distress in family caregivers of patients with heart failure. How these 2 constructs are related has not been fully explored.; Objective: The aims of this study were to describe caregiver reactions to caregiving and psychological distress and to determine the associations between caregiver reactions to caregiving and psychological distress in family caregivers of patients with heart failure.; Methods: In this secondary analysis of a cross-sectional study, the sample included 231 patients and their family caregivers. The Chinese version of the Hospital Anxiety and Depression Scale was used to assess psychological distress (ie, symptoms of anxiety and depression), and the Caregiver Reaction Assessment was used to measure both negative and positive caregiver reactions to caregiving, including financial problems, impact on schedule, health problems, lack of family support, and self-esteem.; Results: Of the participants, 15.2% and 25.5% of caregivers reported symptoms of depression and anxiety, respectively. Impact on schedule was the most common caregiver reaction, followed by financial problems. Impact on schedule was related to both the caregivers' symptoms of depression (odds ratio [OR], 1.705; P = .001) and anxiety (OR, 1.306; P = .035), whereas financial problems were only related to symptoms of anxiety (OR, 1.273; P = .011).; Conclusions: The findings suggest that interventions for reducing the negative impact on schedule of caregiving and helping to solve the caregivers' financial concerns might help to relieve their symptoms of depression and anxiety.
Objective: We aimed to clarify the content of different types of regrets or lack of regret, and the frequency of feeling regret among family caregivers who assisted their relatives during their end of life stage. Method: Seventy primary informal caregivers in Israel were interviewed (17 spouses, 52 children, and 1 cousin) concerning their regret about the end of life of their deceased relative, including a general question about regret and questions about regret concerning life-sustaining treatments. After calculating the frequency of regrets and lack of regret, we conducted a qualitative analysis, using a thematic approach to identify themes and interpret data. Results: A majority of caregivers (63%) expressed regret and about 20% expressed ambivalence involving both regret and denial of regret. Regrets pertained to care given, suffering experienced, and the caregiver's behavior towards, and relationship with the deceased, including missing opportunities to express love and caring toward relatives. Caregivers viewed almost 30% of 75 administered life-sustaining procedures as misguided. Most regrets involved inaction, such as not communicating sufficiently, or not fighting for better care. Conclusion: This article provides a comprehensive description of EoL regrets, and helps clarify the complexity of regrets, lack of regrets, and ambivalence concerning regrets, though the study is limited to one country. Analysis suggests the need for public education concerning the EoL process, and for changes within the health care system to improve communication, to improve understanding of the needs of the terminally ill, and to provide more instruction to family caregivers to help them understand EoL.
Objective: The purpose of this study was to test two 2-month psychosocial interventions (Telephone Interpersonal Counseling [TIPC] and Supportive Health Education [SHE]) to improve quality of life (QOL) outcomes for Latinas with breast cancer and their informal caregivers. Methods: Two hundred and forty-one Latinas with breast cancer and their caregivers were assessed at baseline, immediately after the 2-month intervention, at 4 and 6 months after baseline. QOL outcomes were psychological distress, symptoms and social support. Results: Linear mixed effects models showed that for cancer survivors at 2 months, TIPC produced lower adjusted mean depression scores compared to SHE. At 4 months, SHE had reduced total number of symptoms, global symptom distress, and social isolation compared to TIPC. Only total number of symptoms was lower in SHE than in TIPC at 6 months. Among caregivers at 2 months, total number of symptoms, global symptom distress, and anxiety were lower, and self-efficacy for symptom management was higher in SHE compared to TIPC. Caregiver depression was lower in TIPC compared to SHE at 4 months. Conclusions: These telephone delivered interventions improved different outcomes. TIPC demonstrated superior benefits for depression management and SHE was more successful in anxiety and cancer-related symptom management.
Persons living with dementia and their carers experience stigma. Stigma intensifies social exclusion and threatens health and well-being. Decreasing stigma associated with dementia is a public health priority across national and international settings and is a key component of National Dementia Strategies. Research-based drama is an effective public health strategy for reducing stigma and enhancing well-being. In this article we focus on survey data from an evaluation of a research-based drama called Cracked: new light on dementia. Our analysis illustrates the effectiveness of Cracked in reducing stigma by: decreasing health care practitioners' and family carers' prejudice, fostering critical reflection about relational practices, and fostering a commitment to individual and collective action to address stigma. Cracked is well-positioned to respond to urgent calls for culture change, which include reducing societal misconceptions and stereotypes around dementia and promoting inclusive and meaningful engagement of persons living with dementia across all levels of society.
Objective:This study aimed to review and synthesize findings of the effectiveness of psychosocial interventions aimed at improving outcomes for family carers of people with dementia. Method: A systematic review and meta-analysis were conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We systematically searched the following databases: Cochrane, PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycInfo, Excerpta Medica Database (EMBASE), and Applied Social Sciences Index and Abstracts (ASSIA). RevMan 5 software was used to conduct meta-analysis and subgroup analysis using a random-effects model. Results: The search yielded 22 high-quality intervention articles that were suitable for further meta-analysis. Meta-analysis revealed that psychosocial interventions have a small to moderate significant effect on carer burden (standardized mean difference [SMD] = -0.34, confidence interval [CI] = [-0.59, -0.09]), depression (SMD = -0.36, CI = [-0.60, -0.13]), and general health (SMD = 0.34, CI = [0.18, 0.51]). Discussion: Psychosocial interventions had a positive impact on carer outcomes; however, these results should be interpreted with caution, given the significant level of heterogeneity in study designs. Future research could examine contextual and implementation mechanisms underlying psychosocial interventions to develop effective support systems for family carers of people with dementia.
Objective: To measure the psychological distress among the informal caregivers of disabled young adults with traumatic brain injuries (TBI) and to identify its associated factors.; Methods: An analytical cross sectional study was conducted with 76 informal caregivers of young adults (19 - 50 years) with TBI, using admission records of one of the tertiary care hospitals in Karachi, Pakistan from 2015 to 2016. Data were collected using a structured questionnaire comprising a general demographic questionnaire and the General Health Questionnaire- 28. The effect of the predictors on the psychological distress was determined by applying multiple linear regression analysis.; Results: The mean score of the psychological distress was found to be 23.5±14.28. The findings indicated that anxiety and insomnia, and social dysfunction were the most affected domains of psychological distress; whereas, depression was the least affected. Factors including the management of finances, number of children, patient's gender, and patient's level of disability and lack of socialization were positively associated with the level of distress. As reported by participants, religious beliefs served as a coping mechanism for most of them.; Conclusions: The study showed a high level of distress among informal caregivers of young adults with TBI. For recognizing the psychological effects of TBI in patients and their informal caregivers, it is important to initiate and ensure the provision of psychological support to the patients and their families.
Caring for an older family member with dementia can be extremely challenging, often resulting in diminished psychological well-being. A wide range of both internally and externally directed behavioral strategies may serve to protect well-being among caregivers. Specifically, primary control strategies involve direct attempts to change one's current situation, while secondary control strategies are attempts to inwardly adjust cognitions to align with the current situation. This study examined the use of multiple primary and secondary control strategies among familial caregivers (n = 110), as well as their associations with several indices of psychological well-being. Results showed that the most common primary and secondary control strategies, namely task persistence and positive reappraisal, were used with approximately equal frequency. Furthermore, the specific strategy of positive reappraisal seemed to bolster psychological well-being among caregivers. Findings indicate that primary control strategies might be less effective than secondary control strategies within the context of caregiving for a person with dementia.
While informal caregivers often feel burdened by the care for a person with dementia, they can also experience positive consequences due to caregiving; caregiver gains. One of these, relatively overlooked, caregiver gains is heightened self-esteem. We assessed the predictive ability of non-modifiable (caregiver sociodemographic- and dementia related-) and modifiable (psychological-) factors for caregiver self-esteem). A cross-sectional study in which 201 caregivers, who spent at least eight hours a week on caring for a community-residing person with dementia, completed a semi-structured interview and five questionnaires. One two-block (1: non-modifiable-; 2: modifiable variables) hierarchic multiple regression analysis was used to assess which variables predicted self-esteem. None of the non-modifiable variables significantly predicted self-esteem. Regarding the modifiable variables, depression and relationship quality with the person with dementia significantly predicted self-esteem (adjusted R2 = .460, β = -.207, p = .015 and β = .632, p < .001 respectively). Caregivers who experience a better relationship quality with the person with dementia, and fewer depression symptoms, experience a higher level of self-esteem. Interventions focused on heightening self-esteem should strive to optimize these factors to enhance the lives of informal dementia caregivers.
Aim: Chinese family members always take care of older adults because of obligations stemming from the culture of filial piety and the paucity of a long-term care system. These caregivers usually perceive high levels of stress that could compromise their psychological health and consequently result in anxiety impairments. This study aimed to assess the anxiety symptoms of Chinese family caregivers of older adults, explore factors associated with these symptoms, and provide theoretical evidence on improving their mental health.; Methods: A questionnaire survey was conducted face-to-face with caregivers of community-dwelling older adults. The survey asked about the demographic characteristics of the caregivers and older adults, objective caregiving loads, and social support and included the Zung Self-Rating Anxiety Scale and the Perceived Stress Scale.; Results: Anxiety symptoms were present in 43.1% of caregivers. The R2 changes indicated that the incremental variance explained by each block of variables was 9.8%, 5.0%, 0.7%, 17.6%, and 2.1% for demographic characteristics of caregivers, demographic characteristics of older adults, objective caregiving loads, perceived stress, and social support, respectively. Perceived stress was the strongest predictor of anxiety symptoms, and social support was positively associated with anxiety symptoms. Factors associated with caregivers' anxiety symptoms were having a chronic disease and living with older adults, as well as older adults' weight, hours of sleep, and education level.; Conclusion: Chinese family caregivers of older adults experienced higher levels of anxiety symptoms. Perceived stress could aggravate these symptoms, but social support might assist in alleviating anxiety symptoms from the stress of caregiving.
Objective: The aim of the present work was to study the serial multiple mediating role of optimism, perceived social support and subjective burden in the relationship between objective burden and psychological distress in caregivers of people with Alzheimer´s Disease (AD). Method: One hundred and forty family caregivers of people living with AD were recruited from randomly selected Alzheimer Association Centres. They answered the General Health Questionnaire (GHQ), the Life Orientation Test-Revised (LOT-R), the Functional Social Support Questionnaire (DUKE.UNC), the Zarit Burden Interview (ZBI) and questions relating to gender, age and the amount of time spent on daily caregiving. Results: Results indicated that objective burden and subjective burden were both high in these caregivers. Optimism mediated on psychological distress through social support and through subjective burden with a full mediation role. When comparisons between indirect effects were performed, optimism was the mediator with the greatest effect between objective burden and psychological distress. Conclusion: This study highlights the indirect role of optimism and the advantages that interventions in optimism training in the early stages of the person with AD could produce. Thus, alleviating subjective burden and increasing perceived social support, which would lead to an improvement in the mental health of family caregivers of people with AD.
Caregiving burden significantly effects the physical and mental health of family dementia caregivers. While the association between objective caregiving burden (OCB) and subjective caregiving burden (SCB) of family dementia caregivers is well documented, little is known as with how the association is moderated by the configuration of intrapersonal resource (e.g., immanent justice reasoning) and interpersonal resource (e.g., social support). The present study collected cross-sectional data on 157 major family caregivers of non-institutionalized persons with dementia in an urbanizing region of Western China's Sichuan Province. They responded to questions on daily time spent on caregiving, the short version of Zarit Burden Interview (ZBI), a sub-scale of a caregiver meaning scale, Social Support Rating Scale (SSRS), and demographic questions. Controlling for the demographic variables of the caregivers, this study found that the objective and subjective dementia caregiving burden were significantly associated (p < 0.001), and immanent justice reasoning was positively correlated with subjective burden (p < 0.01). Moreover, the association between OCB and SCB was significantly positive when social support and immanent justice reasoning were both high (p < 0.001), but neutral when social support was high and immanent justice reasoning was low. The association between OCB and SCB was significantly positive when social support and immanent justice reasoning were both low (p < 0.05), but neutral when social support was low and immanent justice reasoning was high. This research suggests the importance of developing intervention programs that consider the configuration of the external supporting resources and internal meaning-making of caregiving of the family dementia caregivers.
Background: Genetic and environmental interactions predispose certain groups to lung cancer, including families. Families or caregiving units experience the disease interdependently. We have previously evaluated the concerns and preferences of patients in addressing the lung cancer experience and cancer risks in their families. This qualitative study evaluates the concerns and preferences of family members and caregivers of patients with lung cancer in the lung cancer experience and familial cancer risks.; Methods: We held focus groups to discuss the format and timing of addressing these preferences and concerns. Qualitative data generated was analyzed using a grounded theory approach.; Results: Five focus groups totaling 19 participants were conducted. Seven themes were identified: (1) journey to lung cancer diagnosis has core dimensions for patient and family, (2) importance of communication between patients, families, and providers, (3) challenges for caregivers and family, (4) mixed perceptions of lung cancer causation among relatives, (5) discussion of cancer risk with relatives has complex dynamics, (6) impact of diagnosis on family health behaviors and screening, (7) role of genetic counseling.; Conclusions: Family members of patients with lung cancer are interested in discussing risk factors, prevention, and diagnoses and also would like access to other supportive services do learn about and cope with some of the stresses and barriers they experience in the family lung cancer journey. The diagnosis represents a potential teachable moment with the opportunity to reduce the risk of LC development or improve early detection in LC patient's family members.
This study explores experiences of mothers in Sweden who care for their adult children suffering from severe mental illness. Using 15 interviews with mothers from 40 to 80 years old, the article examines how predominant professional knowledge and sanism constructs the mothers and their children as deviant and what counterstrategies the mothers develop as a response to these experiences of discrimination. The findings show that the mothers’ experiences are characterized by endless confrontations with negative attitudes and comments that have forced them to go through painful and prolonged processes of self-accusations for not having given enough love, care, support and help in different stages of their children's life. But the mothers’ experiences also reveal important aspects of changes over the life span. As the mothers are ageing, the relationship between them and their children becomes more reciprocal and the ill child may even take the role as family carer.
Objective: This randomized controlled trial was conducted to determine whether a 12-week home-based aerobic and resistance exercise program would improve physical function and caregiving perceptions among family caregivers (FCGs) of persons with heart failure. Method: Overall, 127 FCGs were randomized to one of three groups: usual care attention control (UCAC), psychoeducation only (PE), and psychoeducation plus exercise (PE + EX). Physical function measures (6-min walk test, handgrip, and upper and lower strength) and caregiving perceptions (Bakas Caregiving Outcomes Scale) were obtained at baseline and at 6 months. Results: FCGs in the PE + EX showed significant improvement in 6-min walk distance (p = .012), handgrip, and lower extremity strength compared with the PE and UCAC groups. The combined group had the greatest improvement in caregiver perceptions (p < .001). Conclusion: FCGs in the PE + EX group improved the most in physical function and caregiver perception outcomes. Directions for future research are provided.
Objectives The burden often associated with informal caregiving for patients with dementia is associated with negative effects on health, both physiologically and in terms of caregiver cognition. There is wide variation in the level of burden experienced by dementia caregivers. To better understand caregiver burden, it is thus important to understand the factors associated with level of burden. Methods In the current study, we collected carer burden and putative associated factors at baseline, 6 and 12 months. Hierarchical regression was used to assess the impact of these factors on caregiver burden. We assessed self-reported carer burden, patient behavioural and safety issues, and level of difficulty associated with providing assistance with activities of daily living (ADL). Patients' age was also recorded, and trained nurses assessed patient cognitive performance using the quick mild cognitive impairment screen. Results At baseline, patients' age, cognition and ADLs were associated with burden, and safety and challenging behaviour were both significantly associated with burden independent of the other factors. Change in burden was associated with change in carer-reported safety at 6-month follow-up, and with change in safety and change in carer-reported challenging behaviours at 12-month follow-up. Conclusions Safety issues and challenging behaviours are associated with carer burden, even after accounting for cognitive and functional impairment in the person with dementia. As dementia progresses, monitoring these factors may help to inform stress-management strategies for caregivers.
Introduction: Living with a person with dementia (PWD) causes physical and psychological problems in family caregivers (FCGs), as well as a reduction in their Quality of Life (QOL). The purpose of this study was to examine the possible effectiveness of the therapeutic songwriting method for improving the QOL and well-being of FCGs of PWD. Methods: The sample of caregivers (n = 21) was divided into three homogeneous groups that received 12 intervention sessions. A non-randomized, quasi-experimental design with repeated measures (pre-post intervention) was employed to determine a possible therapeutic effect. The State-Trait Anxiety Inventory (STAI), Short-Form Health Survey (SF-36v2), Beck Depression Inventory, and Rosenberg Self- Esteem Scale were administered before and after the intervention. Results: The results showed a decrease in anxiety and depression scores and an increase in scores of self-esteem after the intervention. Regarding QOL, post-intervention scores in the Mental Component Summary and Mental Health were significantly higher. In contrast, a small effect size was observed for difference between pre-test and post-test on the subscales of QOL: General Health, Social functioning, Role Emotional and Bodily Pain. Discussion: This exploratory study concludes that therapeutic songwriting can help to reduce caregivers' symptoms of depression and anxiety and improve their perceived self-esteem and QOL. This work reinforces the progress made to date and provides new results that highlight the benefits of music therapy for FCGs of PWD.
Background/objective: Anxiety is common in patients experiencing neurocritical illness and their family caregivers. Resilience factors like mindfulness and coping skills may be protective against symptoms of emotional distress, including anxiety. Less is known about the interplay of anxiety symptoms and resilience factors between patients and caregivers. The purpose of this study is to examine the trajectory of anxiety symptoms among dyads of neurocritical care patients without major cognitive impairment and their family caregivers and to elucidate the relationship between resiliency (e.g., mindfulness and coping) and anxiety in these dyads.; Methods: Prospective, longitudinal study of adults admitted to the neurological intensive care unit (Neuro-ICU) and their caregivers. Dyads of patients (N = 102) and family caregivers (N = 103) completed self-report measures of mindfulness (Cognitive Affective Mindfulness Scale-Revised) and coping (Measure of Current Status-Part A) during Neuro-ICU hospitalization and anxiety symptoms (anxiety subscale of the Hospital Anxiety and Depression Scale) during hospitalization and at 3- and 6-month follow-up. We used actor-partner interdependence modeling to predict the effect of one's own baseline characteristics on one's own and one's partner's future anxiety symptoms.; Results: Rates of clinically significant anxiety symptoms were 40% for patients and 42% for caregivers at baseline. Of these, 20% of patients and 23% of caregivers showed moderate and severe symptoms. Approximately, one-third of patients and caregivers reported clinically significant anxiety symptoms at 3- and 6-month follow-ups, with more than 20% endorsing moderate or severe symptoms. Patients' own baseline mindfulness, coping, and anxiety symptoms were associated with lower anxiety symptoms at all time points (ps < 0.001)-this was also true for caregivers. For both patients and caregivers, one's own baseline mindfulness predicted their partner's anxiety symptoms 3 months later (p = 0.008), but not at 6-month follow-up.; Conclusions: Anxiety symptoms in Neuro-ICU patient-caregiver dyads are high through 6 months following admission. Mindfulness is interdependent and protective against anxiety in dyads at 3-month but not 6-month follow-up. Early, dyad-based interventions may prevent the development of chronic anxiety in patients without major cognitive impairment and caregivers.
Introduction: Oral cancer is now a major public health problem in India. It does not only affect the patient, but also has a deep psychosocial impact on the family caregivers who are deeply involved with the cancer patient for nursing, timely medication, and consulting the doctor. Studies have found that the caregivers often suffer from depression, anxiety, and fear of losing their near and dear ones. This study aims to capture the psychosocial impact of oral cancer on the family caregivers.; Materials and Methods: This was a cross-sectional study carried out in a tertiary care hospital with the primary caregivers of those oral cancer patients who completed their treatment and came for follow-up after 2-3 months of treatment completion. The study participants were recruited till a sample size of 100 was reached. This was adequate to report proportions with an error of 10%. We have used "The Caregiver Quality of Life Index - Cancer" scale to capture the psychosocial impact of oral cancer on primary caregiver of the patient. The study was initiated after obtaining approval from the Institutional Ethics Committee. Informed written consents were obtained from all the study participants before beginning the interviews.; Results: Caregivers played an important role in the recovery of the patients. However, the strain of caregiving resulted in increased emotional stress among them. We found 56% of the family caregivers were female and 41% were male. Majority of the caregivers who accompanied the patients to hospital were the spouses. For the caregivers, the mean score for burden of the disease was found to be 60.0 (±20.2), that for disruption was 50.4 (±21.7), and for positive adaptation was 61.4 (±20.7).; Conclusion: Caregivers, who are usually invisible to the health-care team, should be recognized and their mental and physical well-being should also be given attention.
Background: Cancer care is physically and psychologically challenging both for care recipients and caregivers. Caregiving in cancer is an area that needs urgent attention in India. Much of caregiving literature in India is limited to mental illnesses. This study thus examines the perceptions and practices of psychological caregiving among caregivers and care recipients of breast cancer in India.; Methods: Participants were interviewed with the aid of a semi-structured qualitative interview guide. Participants included 39 caregivers and 35 care recipients in different breast cancer stages. Interviews were transcribed, translated to English, coded and themes were derived for further analysis. Informed consent from participants, and ethical clearance and permission from a tertiary hospital was obtained prior to data collection.; Results: Psychological caregiving as perceived by the participants included actions such as encouraging, convincing care recipients, companionship, and maintaining a stress free environment. Caregivers in particular felt that psychological caregiving meant, reacting calmly to sensitive queries of non-family members, providing emotional support to other family members and involvement in religious activities. Taking on such diverse responsibilities gave rise to several unmet psychological needs such as motivation and support in decision-making from other family members.; Conclusion: Irrespective of the status (caregiver or care recipient), participants in this study felt the need for structured counselling services to be incorporated into the standard care protocol. This is an area that needs to be further explored in the context of the breast cancer caregiver and care recipient dyad.
Objective: To investigate the relationship of 2 health-related quality-of-life (QOL) item banks (Emotional Suppression and Caregiver Vigilance), developed for caregivers of service members/veterans with traumatic brain injury (TBI), to caregivers' positive and negative affect.; Setting: Community.; Participants: One hundred sixty-five caregivers of service members/veterans with TBI.; Design: Retrospective database analysis.; Main Measures: TBI-CareQOL Emotional Suppression; TBI-CareQOL Caregiver Vigilance; measures of negative (Patient-Reported Outcomes Measurement Information System [PROMIS] Depression, PROMIS Anger, TBI-CareQOL Caregiver-Specific Anxiety, National Institutes of Health Toolbox [NIHTB] Perceived Stress, GAD-7) and positive affect (Neuro-QOL Positive Affect and Well-being, NIHTB Self-efficacy, NIHTB General Life Satisfaction, Family Resilience Scale for Veterans, TBI-QOL Resilience).; Results: When considered separately, linear regression showed that higher levels of Emotional Suppression and greater Caregiver Vigilance were individually associated with more negative affect and less positive affect. When considered together, the pattern of findings was generally consistent for both Emotional Suppression and Caregiver Vigilance with regard to negative affect and for Emotional Suppression with regard to positive affect. However, when considered together, Caregiver Vigilance was no longer related to positive affect.; Conclusions: Caregivers with high emotional suppression and/or vigilance are more likely to show emotional distress and less likely to have positive affect than caregivers with lower levels of emotional suppression and vigilance. A combination of education and individual counseling targeting coping with negative emotions and TBI-related problems may be beneficial.
The role of caregivers is very important in the management of person with dementia, where it is not uncommon for them to experience psychological distress. However, the level of distress can be managed and reduced through strategic educational intervention. A systematic review has been conducted through searching Medline, Science direct, Cochrane library and EMBASE databases to provide a narrative synthesis that elaborate on methods and outcomes of the educational intervention among informal caregiver of person with dementia. From a total of 5125 records, eight studies were selected and included in this review, where the results show that educational intervention can be implemented either as individual or group intervention. Group intervention methods mainly focus on training programs such as workshops and lectures, and also group-based discussions. While for individual intervention, most of the activities were implemented through self-learning using technology or computer-based systems. In conclusion, based on the outcome of the studies, both methods of implementations are found to be useful in reducing psychological distress of the informal caregiver.
This study was designed to promote enhanced self-efficacy and decreased stress levels for family caregivers at a hospice care hospital, thus increasing their quality of life. This is achieved through group flower arranging sessions. The objectives are to (a) enhance self-efficacy scores for family caregivers of Calvary patients, (b) decrease stress levels for family caregivers of Calvary patients, and (c) disseminate results to other hospices. The results show that the flower arranging sessions resulted in significantly increased self-efficacy and decreased stress and associated problems for the caregiver participants. Implications and suggestions for future research are discussed.
Purpose: The study adopted a randomized controlled trial to compare the effect of culturally compatible psychosocial interventions on multiple aspects of quality of life (QoL) for family caregivers of lung cancer patients. Methods: 157 Chinese informal caregivers of lung cancer patients were recruited together with the family members for whom they were providing care, and randomly assigned to either integrative body-mind-spirit intervention (I-BMS) or cognitive behavioral therapy (CBT). Patient-caregiver dyads attended the same arm of intervention in separate groups for 8 weeks. Assessments of generic QoL, anxiety, depression, perceived stress, insomnia, and caregiving burden were measured before intervention (T0), within 1-week (T1), 8-week (T2), and 16-week (T3) post-intervention. Results: Adopting the intention-to-treat analysis, family caregivers in receipt of both I-BMS and CBT exhibited a statistically significant improvement in generic QoL immediately following intervention and at follow-up assessments, with moderate effect size. Improvement of insomnia was found at T1 for both modes, which deteriorated at follow-up; both modes reduced anxiety and perceived stress at follow-up. No intervention effect was observed in depression and domains of caregiving burden. There was no significant interaction effect between intervention type and time. No main or interaction effect between sample background variables and intervention type was found to predict symptomatic changes at T1 and T3. Conclusions: Culturally attuned I-BMS and CBT exhibited equivalent effectiveness in improving psychological distress and generic QoL for family caregivers of lung cancer patients. To improve the evaluation of outcomes, future study could benefit from incorporating a usual care control.
Informal caregivers play a crucial role in supporting persons with multiple sclerosis (MS), a neurodegenerative disease resulting in progressive worsening of physical and cognitive functioning. While research extensively showed that caregiving workload can be perceived as burdensome, little attention was devoted to the relation connecting workload and caregivers' well‐being. Building on previous literature on stress and coping, the aim of this study was to test the mediational role of coping between caregivers' tasks and well‐being. A group of 680 caregivers of persons with MS (M age = 46.45; 51.2% women) was recruited in eight Italian MS centres between June 2015 and December 2016. Caregiving tasks related to basic activities of daily living (ADL), instrumental ADL, psycho‐emotional and social‐practical care were assessed through the Caregiving Tasks in MS Scale; coping strategies (avoidance, criticism and coercion, practical assistance, supportive engagement, positive reframing) were investigated through the Coping with MS Caregiving Inventory; well‐being was evaluated through the Psychological Well‐Being Scales. Analyses substantiated a multi‐mediation model including tasks in basic ADL, psycho‐emotional and social‐practical care, and the coping strategies avoidance, criticism/coercion, supportive engagement, positive reframing. Basic ADL care was negatively related to psychological well‐being through lower use of supportive engagement and positive reframing. By contrast, psycho‐emotional and social‐practical tasks were both negatively and positively related to psychological well‐being, through higher use of avoidance and criticism/coercion as well as supportive engagement and positive reframing. Findings suggest that caregiving tasks are not solely detrimental to well‐being, but they may also provide a positive contribution through the adaptive coping strategies supportive engagement and positive reframing. Findings also highlighted task‐specific areas that could be targeted in intervention in order to effectively lighten burden and promote well‐being among caregivers.
Objectives: Forecasting survival in cancer is a particularly challenging facet of oncological work and can involve complex interactions with patients and their families. While there is considerable research on patient experiences of being provided with, or becoming aware of, their prognosis, there has been much less emphasis placed on the experiences of caregivers. The aim of this paper was to examine caregivers' experiences of prognosis.; Design: This study used semistructured interviews; transcripts were analysed thematically using the framework approach. These data are part of a larger research project focused on experiences of cancer survivorship.; Setting: Recruitment was from two metropolitan hospitals in Queensland, Australia.; Participants: 50 caregivers of patients living with cancer and receiving treatment at two metropolitan hospitals (32% male, 68% female) participated in this study.; Results: Four main themes were identified: (1) caregivers' uncertainty around the meaning and implications of prognosis, (2) caregivers' sense of exclusion in prognostic conversations, (3) the practice of situating prognosis within a context of hope and (4) the precarious balance between realism, optimism and strategic 'ignorance'.; Conclusions: Caregivers are in many respects the unseen third party of prognostic communication. Developing a better understanding of caregivers' perceptions of prognosis, including how this may be challenged, accepted or otherwise, is important in engaging caregivers in the process of communicating prognostic information. Facilitating greater participation by caregivers in prognostic conversations could potentially address evident complexities and even improve the experiences of all stakeholders in cancer care settings.
Purpose: To explore the psychological experiences of the family caregivers of inpatients with gastric cancer or colorectal cancer, and to identify the relationships among insecure attachment, social support, and psychological experiences. Methods: The study design is a cross-sectional quantitative study collecting data through the use of four questionnaires, including the Hospital Anxiety & Depression Scale, the Self-esteem subscale of the Caregiver Reaction Assessment Scale, the Experience in Close Relationship Scale and the Social Support Rating Scale. Hierarchical regression analysis and path analysis were used to analyze the collected data. Results: Data from 207 participants was used. Family caregivers had experienced both depression and high self-esteem. Social support has significant direct effects on both depression and self-esteem. Attachment anxiety had direct effects on depression and social support, attachment avoidance had direct effects on self-esteem and social support. Social support has mediated the relationship between adult attachment and psychological experiences. Conclusions: Caregivers had experienced both negative and positive psychological outcomes. There were differences in the effects of insecure attachment on psychological experiences. Social support plays an important role in the relationships among insecure attachment, depression, and self-esteem. Insecure attachment styles and social support should be considered in tailored interventions for family caregivers to reduce their depression and enhance their self-esteem.
Background: Family caregivers of patients in the intensive care unit (ICU) experience impairments in the quality of life. Previous studies report that psychological quality of life improves over time, but there has been limited longitudinal research, and measurement points have differed. Factors such as age, gender, and posttraumatic stress symptoms have been found to be associated with the quality of life, but level of hope and its associations with the quality of life have not been investigated.; Objectives: The objective of this study was (1) to evaluate changes in the quality of life in family caregivers during the first year after a patient's admission to the ICU and (2) to identify associations between patients' and family caregivers' background characteristics, posttraumatic stress symptoms, hope, and quality of life.; Methods: A longitudinal study design with five measurement points was used. Family caregivers completed study questionnaires at enrolment into the study and at 1, 3, 6, and 12 months after the patient's admission to the ICU. The quality of life was measured with the 12-Item Short Form Health Survey.; Results: Family caregivers (N = 211) reported improved psychological quality of life during the first year after the patient's admission to the ICU, but it was still lower than the psychological quality of life reported in norm-based data. Being on sick leave, consulting healthcare professionals (e.g., general practitioner), and increased level of posttraumatic stress symptoms were significantly associated with psychological quality of life, whereas hope was not. Reported physical quality of life was comparable to norm-based data.; Conclusion: Family caregivers of patients in the ICU reported impairments in quality of life during the first year after the patient's admission to the ICU. Being on sick leave, consulting healthcare professionals, and reduced posttraumatic stress symptoms may improve mental quality of life.
Objective: Caregivers of patients with lung cancer often face physical, emotional, and financial distress, which not only negatively affects the caregivers' mental health and quality of life but may also impact patients' well-being. The purpose of this systematic review is to examine the content, delivery, and efficacy of psychosocial interventions targeting caregivers of lung cancer patients.; Methods: Studies included in this systematic review assessed psychosocial interventions for caregivers of lung cancer patients that were published in English between January 2009 and December 2017. These interventions focused on burden, mental health, quality of life, self-efficacy, and/or coping as outcome measures. CINAHL, PubMed, PsycInfo, Science Direct, and Web of Science databases were searched using the terms (lung cancer OR lung neoplasms OR thoracic cancer) AND (caregiver OR caregiving) AND (intervention OR program) to systematically review the relevant literature on this topic.; Results: From the 22 studies included in this systematic review, interventions were classified into four categories: communication-based interventions, coping skills training interventions, multicomponent interventions, and stress reduction interventions. The majority of the interventions (especially communication-based and multicomponent) led to improvement, albeit not always statistically significant, in one or more outcomes; however, the most frequently reported improvements included, burden, distress, anxiety, depression, overall quality of life, self-efficacy, and coping abilities.; Conclusions: The unmet needs of informal caregivers of lung cancer patients have a significant impact on their mental health and quality of life, but this burden can be alleviated by psychosocial interventions that offer appropriate support, education, and resources.
Background: This study prospectively evaluated distress, depressive and anxiety symptoms as well as associated factors in family caregivers (FC) of advanced cancer patients at initiation of specialist inpatient palliative care.; Methods: Within 72 h after the patient's first admission, FCs were asked to complete German versions of the Distress Thermometer, Generalized Anxiety Disorder 7-item scale (GAD-7), Patient Health Questionnaire depression module 9-item scale (PHQ-9) for outcome measure. Multivariate logistic regression analyses were used to identify associated factors.; Results: In 232 FCs (62% spouses/partners), mean level of distress was 7.9 (SD 1.8; range, 2-10) with 95% presenting clinically relevant distress levels. Most frequent problems were sadness (91%), sorrows (90%), anxiety (78%), exhaustion (77%) and sleep disturbances (73%). Prevalence rates of moderate to severe anxiety and depressive symptoms were 47 and 39%, respectively. Only 25% of FCs had used at least one source of support previously. In multivariate regression analysis, being female (OR 2.525), spouse/partner (OR 2.714), exhaustion (OR 10.267), and worse palliative care outcome ratings (OR 1.084) increased the likelihood for moderate to severe anxiety symptom levels. Being female (OR 3.302), low socio-economic status (OR 6.772), prior patient care other than home-based care (OR 0.399), exhaustion (OR 3.068), sleep disturbances (OR 4.183), and worse palliative care outcome ratings (OR 1.100) were associated with moderate to severe depressive symptom levels.; Conclusions: FCs of patients presenting with indication for specialist palliative care suffer from high distress and relevant depressive and anxiety symptoms, indicating the high need of psychological support not only for patients, but also their FCs. Several socio-demographic and care-related risk-factors influence mental burden of FCs and should be in professional caregivers' focus in daily clinical practice.
Objective: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer.; Methods: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient's discharge or death at specialist inpatient palliative care ward.; Results: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of "bodily pain" and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms.; Conclusion: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.
Purpose: Caring for cancer patients can be highly stressful for both family caregivers and oncology professionals. These high levels of stress can lead to poorer patient outcomes and increased risk of health problems for the caregivers themselves. Art therapy may help these caregivers as art-making can be a relaxing and enjoyable form of self-expression and art therapists can support individuals in expressing and processing challenging emotions. Research on art-making or art therapy with caregivers of cancer patients has shown some positive results, but its interpretation is limited by the use of multifaceted interventions.; Method: In this mixed-methods study we compared two brief arts-based approaches for both professional and informal caregivers: single sessions of coloring or open-studio art therapy, with a 45-minute session each. Assessments included self-reports of affect, stress, self-efficacy, anxiety, burnout arnd creative agency alongside salivary biomarkers before and after the session. Open-ended questions, field notes and observations formed the qualitative part of the study.; Results: Thirty-four professional (n=25) and informal (n=9) caregivers participated. Participants in both conditions showed increases in positive affect, creative agency, and self-efficacy and decreases in negative affect, anxiety, perceived stress, and burnout. Participants in both conditions expressed enjoyment, relaxation, appreciation of time away from stressors, creative problem solving, a sense of flow, and personal and existential insight. The two approaches also elicited distinct experiences with participants reporting that they found improved focus in coloring and appreciated the support and freedom of expression in open studio art therapy.; Conclusions: These findings suggest that even brief art-making interventions can be beneficial for stressed caregivers of cancer patients. As experience with art-making increased the impact, repeated sessions may be even more useful. We recommend that oncology units have dedicated studio spaces with therapeutic support and different forms of art-making available to meet individual caregiver needs.
Background: About three-quarters of people with dementia live in their own homes, with help from family members and/or other unpaid carers, such as friends or neighbors. Often, unpaid carers themselves experience negative consequences, such as stress, burden, and symptoms of depression or anxiety. Research has shown that these consequences can be alleviated by psychosocial and psychological interventions. Moreover, there are indications that those interventions can be effective when offered online.; Objective: This paper describes the protocol of a randomized controlled trial (RCT) that will take place in the Netherlands to evaluate the effectiveness of iSupport, a minimally guided, internet-based intervention to improve carers' mental health and coping resources.; Methods: A superiority two-arm RCT comparing the effects of the online support program with a waiting list control condition will be carried out in the Netherlands. The iSupport intervention was developed by the World Health Organization and is based on cognitive behavioral therapy principles. It has five main themes divided into 23 lessons. Carers can pick and choose which lessons they want to complete. We aim to recruit 200 unpaid carers. The experimental group (n=100) will be provided with access to the intervention for 3 months following randomization; those in the waiting list control group (n=100) will be granted access to the intervention after 3 months. Assessments will be conducted at baseline (T0), 3 months after baseline (post intervention, T1), and 6 months after baseline (follow-up, T2). The primary outcome is perceived stress, measured by the Perceived Stress Scale. Secondary outcomes are symptoms of depression and anxiety, caregiver burden, sense of competence, self-efficacy, mastery, and carers' attitudes toward dementia and their person-centered approach (ie, to what extent carers tailor the provided care to the interest, needs, and history of the person with dementia).; Results: Recruitment for the trial started in January 2019. As of July 2019, we have enrolled 120 participants. Data collection is expected to be completed by March 2020. Once all the data have been collected, we will conduct the data analyses between April and May 2020. We aim to publish our results in a manuscript by June 2020.; Conclusions: Online interventions have shown promising results in improving the mental health of carers of people with dementia. Additionally, online interventions may overcome accessibility barriers. If successful, this intervention will have important potential for implementation as a public health intervention, since costs and support by trained staff are minimal.; Trial Registration: Netherlands Trial Register (NTL) NL6417; https://www.trialregister.nl/trial/6417.; International Registered Report Identifier (irrid): DERR1-10.2196/14106.; ©Ángel C Pinto-Bruno, Anne Margriet Pot, Annet Kleiboer, Rose-Marie Droes, Annemieke van Straten. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 10.10.2019.
This policy briefing is designed for professionals to share some initial insight from our work with Sport England. Further research on carers and inactivity including best practice examples and recommendations will be released in a report later in 2020.
Purpose: Cancer diagnosis and treatment can generate substantial distress for both survivors and their family caregivers. The primary aim of this investigation is to test a model of dyadic interdependence in distress experienced by cancer survivors and their caregivers to determine if each influences the other.; Methods: To test this prediction, 209 Latinas with breast cancer and their family caregivers (dyads) were followed for 4 waves of assessment over the course of 6 months. Both psychological (depression, anxiety, perceived stress) and physical (number of symptoms, symptom distress) indicators of distress were assessed. Longitudinal analyses of dyadic data were performed in accordance with the actor-partner interdependence model.; Results: Findings indicated that psychological distress was interdependent between cancer survivors and their caregivers over the 6 months of observation. However, there was no such evidence of interdependence on indicators of physical distress.; Conclusions: These findings are consistent with emotional contagion processes and point to the potential importance of caregiver well-being for the welfare of Latina breast cancer survivors.
Background: If collectivistic-oriented family carers choose professional care for dependents with dementia, they risk being stigmatised as failing their obligation. This may influence dementia care choices. Research question: How may individualistic and collectivistic values influence choices in dementia care? Method: Qualitative design with in-depth interviews with a total of 29 nurses, 13 family members in Norway and the Balkans and 3 Norwegian dementia care coordinators. A hermeneutic content-focused analysis was used. Ethical considerations: Ethical approval was obtained from the Regional Ethics Committee for Research, South-Eastern Norway, and the nursing homes' leadership. Findings: Family domain reasons why institutionalisation of dependents with dementia was seen as a last resort: obligation towards family members, particularly parents; worry about other family members' reactions and inability to cope with the care for the person with dementia. Social domain reasons: feelings of shame and stigma regarding dementia, particularly in connection with institutionalisation of family members. Discussion: Children's obligation towards their parents is an important aspect of the morality of collectivistic societies. Institutionalising parents with dementia may cause feelings of guilt and shame and worry about being stigmatised and ostracised. To avoid blame and rejection, caregiver(s) try to keep the fact that family members have dementia 'in the family'. The decision to accept professional healthcare for dependents with severe dementia or have them admitted to a geriatric institution was postponed as long as possible. Conclusion: Family care morality may constitute a significant barrier against seeking professional help for persons with dementia, a barrier based on the expectation that the family will care for their old, even when suffering from severe dementia. Hence, stigma and shame may significantly affect the provision of care. Culturally tailored information may encourage family carers to seek professional help before the disruptive influence of the disease makes institutionalisation the only feasible option.
Objectives: This systematic review and meta-analysis assesses the effectiveness of psychological interventions that involve people with dementia or mild cognitive impairment (MCI) and their informal caregivers, and target improvements in the management of the behavioral and psychological symptoms of dementia (BPSD); quality of life; and/or burden reduction for people with either dementia or MCI and their informal caregivers. Methods: Studies were identified through database searches (Cochrane Library, CENTRAL, CINAHL, EMBASE, MEDLINE and PsychINFO) and clinical trials registers (ClinicalTrials.gov and ). Data were pooled for meta-analysis. Results: Database and reference list searches identified 1,878 references, of which fourteen studies were included. Positive effects were found on the anxiety symptoms of people with dementia on the RAID scale; on the quality of life of people with dementia on the self-rated QoL-AD scale; and on informal caregiver burden on the Zarit Burden Interview. Conclusions: Psychological interventions involving whole dyads have some promise for both people with dementia and informal caregivers, but are still far from uniformly effective across BPSD, quality of life, and caregiver burden. Further research directions are discussed.
Purpose: Cancer patients' intimate partners often experience levels of psychological burden that are comparable to or even exceed that of the patients, making it imperative that they too be provided with appropriate psychological support. This review aimed to present the content and the effects of interventions delivered to caregiving partners of cancer patients on both partners and patients. Furthermore, we provide information about the acceptability of the interventions and study quality. Methods: An initial search in Web of Science, PsycINFO, and PubMed databases was conducted. We included RCTs as well as pre-post studies that focused on enhancing partners' wellbeing or diminishing partners' distress. To be included, interventions had to have been offered to partners either only or predominantly. We included studies published until December 2017. The methodological quality of the trials was assessed with the EPHPP assessment tool. Results: Nine studies met the inclusion criteria. Intervention topics included social support, short-term problem solving, the marital relationship quality, role expectations, emotional resilience, and coping strategies. Positive intervention effects were found with regard to social support, emotional distress, improved communication, posttraumatic growth, self-efficacy, and coping. Despite considerably low response rates, the interventions were generally well accepted. Most of the studies suffer limitations because of methodological flaws, the lack of randomization, and small sample sizes. Conclusion: Interventions delivered to partners of cancer patients may have positive effects on both partners and patients. We derive several implications for future research: Intervention programs should be tailored to the specific needs of caregiving partners with regard to the cancer trajectory and gender. Effort has to be made to increase sample sizes as well as to include particularly burdened individuals. Selected measurement instruments should be sensitive to specific intervention effects. Finally, information on both statistical as well as clinical relevance of research findings should be provided.
Informal caregiving is a rewarding but demanding role. The present theoretical framework proposes to adapt the tridimensional concept of burnout to informal caregiving as a way to address the potential consequences of caregiving. This adaptation reflects caregivers' reported difficulties, as well as empirical findings on emotional exhaustion, depersonalization, and personal accomplishment as caregiving outcomes. But to understand burnout in informal caregiving contexts, it is also necessary to find ways to model it. The Informal Caregiving Integrative Model (ICIM) is thus proposed. This model is based on the integration of elements from literature on both informal caregiving stress and professional burnout. The goal of the ICIM is to emphasize the importance of every category of determinants of informal caregiver burnout (i.e., relating to the caregiver, the caregiving setting, and the sociocultural context), with a key mediating role for the caregivers' appraisal of their situation and their relationship with the care-recipient. This article is a first integrative step in the consideration of a form of burnout specific to informal caregivers and supports the design of empirical and interventional studies based on the theoretical foundation that the ICIM proposes.
Purpose: Art interventions have demonstrated holistic benefits for persons living with dementia and their caregivers. In this article, we describe the results of a pilot photojournalism program for 10 unpaid caregivers of persons living with dementia, with respect to caregivers’ experience in the program and their psychological well-being. Design: Caregivers participated in four sessions led by a professional photojournalist who taught principles of photography. Between the sessions, caregivers took photographs that represented what caregiving meant to them using digital cameras provided in the program. During the sessions, instruction was interspersed with discussion of caregivers’ photographs. Method: Caregiver burden and depressive symptoms were measured pre- and postprogram. Qualitative exploration included sessions’ observations, viewing caregivers’ photographs, and recording caregivers’ accompanying comments. Findings: For participants with pre- and postprogram data, caregiver burden decreased significantly (p =.037). For caregivers with pre- and postprogram data, depressive symptoms decreased nonsignificantly (p =.066). Clinically meaningful reductions in caregiver burden and depressive symptoms were attained. Qualitative findings highlighted caregivers’ strong engagement with the project, the facilitator, and other participants, and reflection on multiple aspects of their experience. Conclusions: This intervention helped caregivers creatively communicate their experience and demonstrated efficacy in the improvement of caregivers’ psychological well-being.
Background Gynecologic cancer can create hopelessness and death anxiety and alter the lifestyle of the affected women and their caregivers. Perceived social support may facilitate coping with this illness. Objective The aim of this study was to determine whether hospitalized patients with gynecologic cancer and their caregivers differ in feelings of hopelessness and death anxiety and how those conditions may be related to their social support. Methods Two hundred patients with gynecologic cancer and their 200 caregivers from 1 university hospital were enrolled in this descriptive correlational study. Study measures included a demographic form, the Perceived Social Support Scale, the Beck Hopelessness Scale, and the Thorson-Powell's Death Anxiety Scale. Data were analyzed using Student t test, Pearson correlation test, and linear regression analyses. Results Patients had higher hopelessness and death anxiety compared with caregivers (P < .001). Patients' perceived social support explained 35% of the total variance in hopelessness and 28% of the variance in death anxiety; caregivers' perceived social support explained 40% of the total variance in hopelessness and 12% of the variance in death anxiety. Conclusion Patients felt hopelessness and death anxiety in greater rates than caregivers. Social support had a significant effect on hopelessness and death anxiety of patients and their caregivers. Implications for Practice Nurses, who are the healthcare professionals spending time with patients and families from diagnosis forward, need to evaluate patients and their caregivers for hopelessness and death anxiety and consider their social support systems during this evaluation.
The purpose of this research was to explore the association between state and trait anxiety experienced by patients who had undergone traumatic amputation and their family caregivers. The sample studied consisted of 50 hospitalized patients who had undergone traumatic amputation and 50 family caregivers. The collected data included patients’ and caregivers’ characteristics and the State Trait Anxiety Inventory scores. Fifty percent of patients and caregivers scored below 50 and 47, respectively (median), in trait anxiety. In terms of state anxiety, at least 50% of patients and caregivers scored below 56 and 50.5, respectively. These values indicate moderate to high levels of the impact of amputation on the trait and state anxiety of amputees and their caregivers. A positive linear correlation was found between the trait and state anxiety of the patients as well as between the trait and state anxiety of caregivers, as expected (ρ = 0.915, P <.001, and ρ = 0.920, P <.001, respectively). A statistically significant positive correlation was also observed between state patient anxiety and state anxiety of caregivers (ρ = 0.239 and P =.039) and between trait patient anxiety and trait anxiety of caregivers (ρ = 0.322 and P =.030). More specifically, as the patient’s anxiety score (either trait temporary) increases, the score of the caregivers’ anxiety increases and vice versa. Nurses should be aware of the association between anxiety of amputees and caregivers and, therefore, work in multidisciplinary teams to maximize clinical outcomes for patients after amputation and their families.
Purpose The purpose of this paper is to evaluate the effect of the planned pre-electroconvulsive therapy (ECT) family teaching on depression, anxiety and stress of caregivers of patients with mental disorders receiving ECT. Design/methodology/approach In this quasi-experimental study, 130 participants were randomized allocated into intervention or control groups. The planned family teaching program consisted of four 90 min sessions held during four weeks. Assessments occurred at pre-intervention (one week before the first session), and post-intervention (one months after the four session). Data were collected using demographic questionnaire and Depression, Anxiety and Stress Scale (DASS-21). Mean comparisons were performed using Student’s t-test while effect sizes were estimated by Cohen’s d coefficient. The significance level was considered less than 0.05. Findings The mean scores of the depression, anxiety and stress levels in the intervention group were significantly reduced compared to the control group (p=0.001). Originality/value The family pre-ECT teaching intervention and counseling decreased the depression, anxiety and stress level of family caregivers of patients with mental disorders receiving ECT and the maintenance of other favorable conditions at baseline. These results suggest that even a short-term educational intervention for family members of patients received ECT can improve emotional outcomes of treatment in the family.
Objectives: Informal caregivers of veterans are providing care for a population whose specialized care needs require increased investments on the part of caregivers and for longer durations. Empirical evidence shows negative mental health effects on these caregivers at rates that outpace those seen in caregivers in the general population. With a growing need and limited resources, effective interventions are needed to improve mental health outcomes in this special population of caregivers. Methods: This pilot, randomized control trial tested the effectiveness of a mindfulness-based intervention at improving perceived stress, depressive symptoms, anxiety, and worry compared to waitlist controls in a sample of 23 caregivers of veterans. Results: The Mann-Whitney U tests used to determine whether groups differed in change scores (post minus pre) indicated that there were significant differences between the mindfulness and waitlist control group in perceived stress (U = 21.5, p =.006, r = .57), anxiety (U = 24.0, p =.009, r = .54), and worry (U = 29.5, p =.024, r = .47). Results from the Wilcoxon signed-rank tests indicated that caregivers in the mindfulness group reported a significant reduction in perceived stress (Z = − 2.50, p =.013, r =.75) and anxiety (Z = − 2.81, p =.005, r =.85), whereas the waitlist control group reported higher mean symptoms at the end of the intervention period. Conclusions: Given these promising results, policymakers, health practitioners, and veteran-related programs should increase efforts to provide caregivers of veterans with mindfulness-based interventions to improve mental health outcomes.
Background: Caring for people with dementia (PWD) is stressful and poses many life challenges for the family caregivers. Interventions targeting the stress and psychological well-being of the caregivers have been proposed but the sustainable effects and efficacies of these interventions vary considerably. Mindfulness-based cognitive therapy (MBCT) has been shown to be effective at reducing stress in several populations. However, limited research on the effects of MBCT in family caregivers of PWD has been conducted. This study protocol aims to examine the effects on stress reduction of a modified MBCT for family caregivers of PWD. Methods: A prospective, single-blind, parallel-group, randomized controlled trial will be adopted. A convenience sample of 100 community-dwelling family caregivers of PWD will be randomized to either the modified MBCT or the control groups. The modified MBCT group will receive a 10-week, seven-session, group-based modified MBCT whereas the control group will receive a social interaction and routine education (SIRE) on dementia care program at a frequency and timing similar to those in the intervention group. The primary outcomes (stress) and secondary outcomes (depression, anxiety, burden, health-related quality of life, and the behavioral and psychological symptoms of the care recipient) will be measured immediately post-intervention (T1) and at 6-month follow-up (T2), which will be compared with the baseline (T0). Discussion: Reducing the stress of caregiving can promote the well-being of the family caregivers and maintain their sustainability in providing daily care for their family members with dementia. MBCT is found to be effective for stress reduction in other populations, and the results of this study are able to provide us with evidence for using MBCT as a standard supportive intervention for the family caregivers of PWD. Trial registration: ClinicalTrials.gov, NCT03354819. Registered on 28 November 2017.
Background: Caregivers of people with dementia experience high stress levels. Mindfulness-based cognitive therapy has been found to be effective in reducing stress and improving the psychological well-being of several populations. Objective: To explore the feasibility and preliminary effects of a modified mindfulness-based cognitive therapy for family caregivers of people with dementia. Methods: In a single-blinded, parallel-group, randomized controlled trial, 36 caregivers of people with dementia were randomized to either the intervention group, receiving the 7-session modified mindfulness-based cognitive therapy in 10 weeks; or the control group, receiving the usual family care and brief education on dementia care. The brief education sessions were similar in frequency and duration to the intervention group. Various psychological outcomes of caregivers were assessed and compared at baseline, immediately post-intervention, and at the 3-month follow-up. A focus group with eight participants from the intervention group was conducted to identify the strengths, limitations, and difficulties of the intervention. Results: Intervention feasibility was established with a high completion rate of 83% (completing ≥5 out of the 7 sessions) and a low attrition rate of 11.1%. The duration of the average weekly home-based mindfulness practice of the caregivers was 180 minutes (S.D. = 283.8). The intervention group experienced a statistically significant decrease in stress levels (Z = -1.98, p = 0.05, Cohen's d = 0.7) and depressive symptoms (Z = -2.25, p = 0.02, Cohen's d = 0.8) at the post-test; and a decrease in stress (Z = -2.58, p = 0.01, Cohen's d = 0.9), depressive symptoms (Z = -2.20, p = 0.03, Cohen's d = 0.7), and burden (Z = - 2.74, p = 0.006, Cohen's d = 1.0), and improved quality of life (physical) (Z = -1.68, p = 0.09, Cohen's d = 0.6) at the 3-month follow-up compared to the controls. A focus group conducted immediately after the intervention revealed three major themes: Impacts on the family caregivers, Impacts on the people with dementia, and Difficulty in practicing mindfulness. Conclusion: The findings support the feasibility and preliminary effects of the modified mindfulness-based cognitive therapy on reducing the stress of caregivers and improving their psychological well-being. Some potential effects on people with dementia (e.g., improvements in behavioral problems) were reported by the caregivers. A future study with a larger and more diverse sample is proposed to evaluate the longer-term effects and generalizability of the modified mindfulness-based cognitive therapy and the impacts on people with dementia.
Objectives: This study aimed to review the effectiveness of low-intensity cognitive behavioral therapy (CBT)-based interventions for informal dementia caregivers when compared to non-active control conditions. Design: Literature searches were conducted in databases of published (PsycINFO, MEDLINE, CINAHL, Scopus) and unpublished (Open Grey, ISRCTN registry, ClinicalTrials.gov, ProQuest) literature. Individual meta-analyses were conducted for each outcome variable. Pooled intervention effect estimates were calculated as Hedge's g using a random-effects model.Included studies: Studies examining the effect of low-intensity CBT-based interventions for informal caregivers for people with any progressive dementia were included. Randomized controlled trials and controlled clinical trials were included. Measurements: Outcomes included the psychological variables of anxiety, depression, burden, and distress (defined as stress or strain). Results: A total of five studies reported anxiety outcomes, 12 reported on depression, three reported on burden, and six reported distress outcomes. Results demonstrated a significant effect of low-intensity CBT-based interventions in reducing all examined psychological difficulties. Small effect sizes were found for anxiety (g = 0.35), depression (g = 0.27), and distress (g = 0.33). A medium effect was found for burden (g = 0.53). Conclusions: The results provide initial support for low-intensity CBT-based interventions for dementia caregivers. Clinical implications and research recommendations are explored. Strengths and limitations of the study are discussed.
Background: Carers of dependent older people experience high levels of psychological distress. However, little is known about the effects of coping on carer distress over time. In this one year longitudinal study we investigated the relationship between distress, and coping strategies in a representative sample of family carers living in Spain. Methods: Primary carers of older people were recruited (N = 200). We used probability sampling and collected data via individual interviews from 2013 to 2015. Variables investigated included psychological distress, coping, and levels of objective and subjective burden. Panel data analysis was used to test a model of association of psychological distress, and coping strategies controlling for key confounders. Results: Acceptance and emotional support were the most frequently used strategies, whereas behavioural disengagement and humour were the least used. In the panel data regressions, positive reframing (B = -0.79, p < 0.001), self-distraction (B = -0.46, p = 0.034), substance use (B = 0.57, p < 0.001) and denial (B = 0.57, p = 0,049) were significantly related to psychological distress at one year follow-up. Limitations: Limitations include participant drop out and assessing substance use coping via a brief measure. Conclusions: Positive reframing and self-distraction were longitudinally associated with lower levels of carer psychological distress. Using denial and substance use coping increased distress long-term. Our results suggest that interventions that focus on positive reframing and assisting carers in decreasing dysfunctional coping may be useful therapeutic targets mitigating carer psychological morbidity.
Objectives: To examine the effects of the group benefit-finding therapeutic intervention (BFT) for Alzheimer family caregivers up to 10-month follow-up. Methods: This was a cluster-randomized double-blind controlled trial in social centers and clinics. Participants included 129 caregivers. Inclusion criteria were 1) primary caregiver aged 18 years and older and without cognitive impairment, 2) providing 14 or more care hours per week to a relative with mild-to-moderate Alzheimer disease, and 3) scoring 3 or more on the Hamilton Depression Rating Scale. Exclusion criterion was care-recipient having parkinsonism or other forms of dementia. BFT (using cognitive reappraisal to find positive meanings) was evaluated against two forms of psychoeducation as controls—standard and simplified (lectures only) psychoeducation. All interventions had eight weekly sessions of 2 hours each. Primary outcome was depressive symptoms, whereas secondary outcomes were global burden, role overload, and psychological well-being. Measures were collected at baseline, postintervention, and 4- and 10-month follow-up. Results: Mixed-effects regression showed that BFT's effect on depressive symptoms conformed to a curvilinear pattern, in which the strong initial effect leveled out after postintervention and was maintained up to 10-month follow-up; this was true when compared against either control group. The effect on global burden was less impressive but moderate effect sizes were found at the two follow-ups. For psychological well-being, there was an increase in the BFT group at 4-month follow-up and a return to baseline afterward. No effect on role overload was found. Conclusion: Benefit-finding reduces depressive symptoms as well as global burden in the long-term and increases psychological well-being in the medium-term.
Informal caring at the end of life is often a fraught experience that extends well beyond the death of the person receiving care. However, analyses of informal carers' experiences are frequently demarcated relative to death, for example in relation to anticipatory grief (pre-death) or grief in bereavement (post-death). In contrast to this tendency to epistemologically split pre- and post-death experiences, we analyse informal caring across two separate qualitative interviews with 15 informal carers in one metropolitan city in Australia—one before and one after the death of the person for whom they cared. In doing so, we focus on accounts of care across dying and bereavement including: the evolving ambivalence of carers’ social relations at the end of life and beyond; dying and death as a challenge to the ideal of authenticity; and, the potential for misrecognition and social estrangement in caring relations at the end of life. We draw on social theory addressing the themes of ambivalence, authenticity and recognition to enhance our understanding of caring as a social practice that occurs across dying and bereavement, rather than as structured primarily by the context of one or the other.
Aim Increasing demands for care provision to older adults require good physical and mental health among caregivers. Few studies have examined the health status and correlates of quality of life among caregivers of older adults. The present study therefore sought to examine the prevalence of chronic physical conditions, psychological distress, and correlates of physical and mental quality of life among caregivers of older adults (≥60 years) in Singapore. Methods Participants were 285 informal caregivers who were providing care to an older relative. Participants were recruited at the Institute of Mental Health, Singapore, and they completed self-report measures on chronic physical morbidity, psychological distress, and physical and mental quality of life. Multiple regression models were constructed to examine correlates of physical and mental quality of life. Results More than half of the caregivers had at least one chronic physical condition (58.6%) and psychological distress (52.6%). Chronic physical morbidity, psychological distress, and secondary education status were associated with lower physical quality of life. Psychological distress, younger age, primary education status, and more time spent caregiving were associated with lower mental quality of life. Conclusion Poor physical and mental health among caregivers may impair their ability to provide adequate care to older adults with progressive medical needs. It is important for medical practitioners not to neglect the physical and mental health of caregivers through continued assessment of chronic physical morbidity, psychological distress, and quality of life.
Purpose: We aimed to assess the influence of anxiety and depression on the physical and mental quality of life (QoL) in patient with chronic obstructive pulmonary disease (COPD) and caregiver dyads, detect the simultaneous effect of anxiety and depression of each partner on the other’s QoL and determine the dyadic patterns. Methods: A cross-sectional descriptive design was used. The actor–partner interdependence model estimated by structural equation modeling was used for the dyadic analysis. Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7) and 12-Item Short-Form Health Survey (SF-12) were used to measure depression, anxiety and QoL, respectively. Results: Eighty COPD dyads were enrolled in the study. Patients presented higher depression symptoms and poorer physical and mental QoL than their caregivers, whereas comparable levels of anxiety were found in patients and caregivers. The model exploring the effects of depression and anxiety on mental QoL found that patients’ depressive symptoms negatively influence their mental QoL, and caregivers’ anxiety and depression symptoms negatively impact their mental QoL. The model exploring the effects of anxiety and depression on physical QoL detected one statistically significant actor effect with patients’ depressive symptoms negatively influencing their physical QoL, and two partner effects with caregivers’ anxiety worsening patients’ physical QoL and caregivers’ depression improving patients’ physical QoL. Conclusions: The results suggest that caregivers’ psychological distress influences caregivers’ mental QoL and patients’ physical QoL. Therefore, health-care professionals should assess and treat anxiety and depression in both members of the COPD dyad to improve their QoL.
Objectives: To explore and compare levels of mental health, care burden, and relationship satisfaction among caregiving spouses of people with mild cognitive impairment or dementia in Parkinson disease (PD-MCI or PDD) or dementia with Lewy bodies (DLB). Methods: Spouses (n = 136) completed measures of mood, stress, resilience, general health, quality of life, care burden, and relationship satisfaction, as well as sociodemographic factors. Additionally, data on motor and neuropsychiatric symptom severity of people with PD-MCI, PDD, or DLB were obtained in a subsample. Results: Most spouses were married women (>85%) who provided a median of 4 years of care and 84 hours of weekly care. Among these, relationship dissatisfaction, stress, anxiety, care burden, and feelings of resentment were common. Spouses of people with PDD and DLB had significantly higher rates of burden, resentment, and depression compared to spouses of people with PD-MCI. Furthermore, unique group differences emerged whereby spouses of people with PDD had significantly longer duration of care provision, higher stress, more relationship dissatisfaction, and fewer positive interactions, compared to PD-MCI group, whereas anxiety and lower levels of mental health were prominent in spouses of people with DLB, compared to PD-MCI group. Despite this, the majority of spouses reported good quality of life, resilience, and satisfaction with the caring role. Conclusion: Both PDD and DLB significantly contribute to poorer mental health and higher levels of care burden in spouses. Clinicians should actively screen the risk of burden, stress, depression, and anxiety among caregiving spouses of people with these conditions.
Caregiving can be experienced as a stressful process, which can cause psychological and physical consequences. The combination of prolonged stress and the physical demands of caregiving may impair the physiological functioning of caregivers and increase the risk of health problems creating considerable stress in the life of caregivers regarding emotional, physical, social and financial areas. This literature review explored studies that used measures of the autonomic nervous system in caregivers of oncology patients such as electrodermal and cardiovascular (re)activity. The results revealed that caregivers had elevated stress levels and a serious autonomic imbalance that may, in the long term, trigger negative health consequences such as infectious diseases, cancer progression, cardiovascular disease and even premature death. The results showed the need to carry out preventive strategies in this population, in order to improve the autonomic profile of caregivers of cancer patients.
The objectives of this study were to (1) analyze the circumstances of caregivers of elderly individuals with disabilities; (2) present their levels of care stress; (3) examine family, market, and government factors that help reduce this care stress; and (4) identify the most effective method of alleviating stress for these individuals. Face-to-face interviews were conducted using standardized questionnaires. Caregivers experienced a moderate level of stress, which increased with time. Spouse caregivers experienced highest care stress, with psychological stress being greatest. All caregiver groups received different levels of care assistance from family, market, and government. Most received support from family, few paid for professional care market services, and most were unsatisfied with government care services. Stress was associated differently with care time, care assistance, and sociodemographic characteristics. Spouse caregivers, psychological counseling, and quality of public care services require further attention, with an integrated care system required to help alleviate care stress among caregivers.
Background: Informal caregivers provide a large amount of day-to-day assistance and are crucial for the ability of survivors to recover and adapt to life after stroke.; Aim: The development of caregiver support programs is limited by lack of large long-term follow-up studies. We present a comprehensive study of Swedish stroke caregivers' life situation in relation to degree of functional dependency of the survivor.; Patients and Methods: In 2016, the Swedish Stroke Register, Riksstroke, conducted a long-term follow-up survey on caregivers to patients with stroke three and five years earlier. Items on psychological well-being were adapted from the 36-item short-form health survey and poor outcome was defined using the 36-item short-form health survey reference material. Survivor degree of dependency was indicated by the caregiver as independent, partially dependent, or completely dependent.; Results: A total of 5063 community dwelling dyads were included: 56.5% of survivors were independent, 33.4% partially dependent, and 10.1% completely dependent. Caregiver life impact, need of support, and proportion of poor psychological well-being increased incrementally with survivor degree of dependency. In the completely dependent group where 41.1% of survivors could not be left unattended for more than 1 h, 23.7% of caregivers expressed unmet need of caregiver support; 51.4% reported poor psychological well-being compared to 19.3% in the independent group.; Conclusion: The caregiver situation varies greatly with degree of survivor dependency which makes generalizations of caregiver needs difficult. Our results emphasize the need for integrating support aimed specifically at caregivers to survivors of stroke with a large degree of dependency.
Extended longevity among adults with Intellectual Disabilities (ID) and increasing rates of diagnosis of Autism Spectrum Disorders (ASD) mean that parents are unlikely to remain primary carers throughout the lifecourse of adults with ID and ASD. In the context of decreased funding for disability services and policy moves toward de-congregated living, non-disabled (ND) siblings of people with ID/ASD are increasingly likely to be drawn into support and care roles for their siblings. Drawing on literature on moral emotions and the ethics of care, and on narratives collected from 25 ND siblings in Ireland in 2015/6, this paper explores the emotional dynamics entwined in the care and support roles ND siblings engage in. Findings indicate that relationships forged in childhood underpinned the moral ethic to care exhibited by many participants and that their caregiving was experienced as moral practice and emotional engagement, shaped by and constitutive of biography and moral identity. When making care choices, siblings undertook evaluative judgement of their own behaviours, which was informed by perceptions about obligations to care and about what constitutes good care. Decisions about care had emotional resonance, with guilt, other-oriented empathy and righteous-anger emerging as the key emotions in the narratives. Dilemmas between autonomy and relatedness caused siblings to grapple with feelings of resentment and guilt, and many struggled to exercise self-compassion in the face of perceived moral failings. Others experienced conflict characterised by a struggle to reconcile competing care and nurturing expectations within their intimate relationships. Through ongoing self-evaluation of their care behaviours siblings' moral identities were continually reconstituted. It is imperative that service providers and professionals understand and acknowledge such moral and emotional dynamics when working with people with ID/ASD and their families.
Background: Approximately seven million people in the UK are engaged in informal caregiving. Informal caregivers are at risk of poorer mental and physical health. However, less is known about how the relationship between the informal caregiving and psychological distress changes over time. The aim of this study was to investigate longitudinal associations between the informal caregiving and psychological distress amongst UK men and women aged 16+. Methods: Data were analysed from the UK Household Longitudinal Study (UKHLS, n = 9368), a nationally representative study of UK households. Longitudinal linear mixed modelling was used to estimate associations between the longitudinal patterns of informal caregiving (non-caregiver/one episode of 1–2 years/intermittent caregiving/3+ years caregiving) and trajectories of psychological distress across seven waves of UKHLS data. Results: Informal caregiving was not associated with psychological distress for men. Women engaged in long-term (⩾3 years) or intermittent caregiving had higher levels of psychological distress at the point of initiation, compared with women who were not caregivers throughout the study period (3+ years caregiver: regression coefficient 0.48, 95% confidence interval (CI) 0.07–0.89; intermittent caregiver: regression coefficient 0.47, 95% CI 0.02–0.92). Trajectories of psychological distress changed little over time, suggesting a plateau effect for these caregiving women. Conclusions: Women engaged in long-term or repeated shorter episodes of informal caregiving reported more symptoms of psychological distress than non-caregiving women. Given the increased risk of reporting psychological distress and the increasing importance of the informal care sector, the risk of poorer mental health of informal caregivers should be a priority for public health.
Objective: Cancer and its treatment are highly stressful events that may significantly affect the daily emotional well-being of patients and their informal caregivers. Patient- and caregiver-reported received and provided support may contribute to both dyad members' fluctuation in daily affect, but few studies have examined these associations from a dyadic perspective so far. The current study examined predictions derived from 3 theories on patterns of relations between subjectively assessed dyadic provided and received support and daily affect within dyad members: (a) invisible support theory, (b) the suggestion that providing support may be better than receiving it, and (c) beneficial supportive equity. Method: Actor-partner interdependence models were tested using 28-day diary data from 200 patient-caregiver dyads. Diary assessments started on the first day following patients' discharge from the hospital, that is, about 3 weeks following patients' hematopoietic stem ceil transplantation (HSCT). Results: Daily invisible support was not related to more positive indicators of patients' or caregivers' daily affect. For patients' affect, findings generally supported the hypothesis of psychological benefits of support provision over receipt, in both concurrent and lagged analyses. For caregivers, visible received support from patients and supportive equity (i.e., both provided and received support relatively high), both concurrently and lagged, were related with better emotional state. Conclusions: The findings highlight the costs, benefits, and complexities of daily support transactions in dyads following HSCT, thus indicating the practical implications of the study: the importance of screening for support needs and abilities in both patients and caregivers.
Informal dementia caregivers are thought to experience high levels of depression and burden, which can contribute to worse cognitive functioning. However, poorer cognitive functioning in caregivers is not always found. The current study explored whether caregivers perform better, worse, or similar to non-caregivers on tasks for executive functioning and memory. Whether sociodemographic and psychosocial characteristics are associated with caregivers' performance was also assessed. One hundred forty-five caregivers completed the Letter Fluency and Category Fluency, the Logical Memory test from the WMS-III, and five questionnaires assessing psychological characteristics. Standardized -scores (based on age, education, and sex) were calculated using data from a matched control group (187 non-caregivers). One sample -tests were executed to examine if the caregivers' standardized mean -score significantly deviated from the population mean of = 0. The -scores were used as dependent variables in multivariable regression analyses. The caregivers performed significantly better on Logical Memory - Immediate Recall than non-caregivers ( = 2.92, = .004). The obtained -scores on the other tasks did not deviate significantly from 0. Male sex and social reliance predicted higher scores on Category Fluency, but the -test was non-significant, and the explained variance was low (adjusted = .068). We found no evidence for poorer cognitive performance among informal caregivers compared to non-caregivers. Our results suggest that caregiving for a loved one with dementia does not impair the caregivers' episodic memory or executive functioning when measured cross-sectionally.
Objective: The family caregivers of patients receiving palliative care experience high levels of anxiety and depression. The aim of the present study was to investigate the factors associated with family caregivers' anxiety and depression when caring for patients with advanced cancer in Greece.; Methods: The sample consisted of 100 patients undergoing palliative radiotherapy and their respective caregivers. Patients completed the Hospital Anxiety and Depression Scale (HADS) and the MD Anderson Symptom Inventory. Their respective caregivers completed the Oberst Caregiving Burden Scale, the Bakas Caregiving Outcomes Scale, and the HADS. Correlational and multiple regression analyses were conducted to identify potential predictors of anxiety and depression.; Results: The majority of patients were male (63.0%), whereas the majority of their caregivers were female (76.0%). The mean ages of patients and caregivers were 63.9 ± 10.8 and 53.3 ± 12.6 years, respectively. Caregiving anxiety and depression were associated with patients' variables, such as gender (P < 0.0005), primary cancer (P = 0.008), and past surgery (P = 0.002), and caregiver's variables, such as gender (P = 0.001), co-residence (P = 0.05), previous care experience (P = 0.04), and means of transport (P = 0.038). In multiple regression analyses, caregiving anxiety and depression were significantly predicted by caregivers' and patients' characteristics, in a model that accounted for 48% of the anxiety variance (P < 0.0005) and 39% of the depression variance (P < 0.0005).; Conclusion: The caregivers who experienced more anxiety and depression shared the following traits: they were women, cared for men with lung cancer, cared for patients not undergoing surgery, lived together, were younger, went to the hospital by private means of transport, had previous care experience, and perceived an increased degree of general burden. Further investigation of the factors that may affect caregivers' psychological state is required to better identify parameters that may predict it.
Aims and Objectives: This study aimed to analyse the prevalence and factors associated with suicidal ideation among family caregivers of people with mental disorders.; Background: Studies conducted with family caregivers of people with dementia and cancer point out a high prevalence of suicidal ideation among these subjects; however, this aspect has not yet been investigated among family caregivers of people with mental disorders.; Design: This is a cross-sectional study, conducted with 537 family caregivers of patients from 16 Psychosocial Care Centers (CAPS) of the 21st Health Region of the state of Rio Grande do Sul, Brazil.; Methods: Question 17 of the Self-Reporting Questionnaire (SRQ-20) was used for suicidal ideation screening. The prevalence of suicidal ideation was calculated according to sociodemographic and care variables, with confidence interval estimate (95% CI). Crude and adjusted odds ratios were calculated by logistic regression. The Guidelines to Reporting of Observational Studies in Epidemiology (STROBE Statement) was adhered in this study (See File S1).; Results: The prevalence of suicidal ideation found in this study for the 30 days preceding the interview was 12.5% (95% CI: 10-15). The factors associated with the outcome were lower age, lower schooling, feeling of burden, self-report of stress problem and dissatisfaction with family relationships.; Conclusion: The prevalence of suicidal ideation among the studied family caregivers was high and strongly associated with issues regarding care, showing the need for interventions that provide support.; Relevance For Clinical Practice: Nurses are a large part of the workforce of the community mental health services. The careful characterisation of the subjects who show suicidal ideation, as performed in this study, may reveal specificities capable of refining the diagnostic potential for establishment of action plans in a timely manner, avoiding possible attempts or even the consummation of suicide.
Background: This paper describes the Co-Care-KIT, a reflective toolkit designed to provide insights into the diverse experiences of home-based informal caregivers during the delivery of care to a relative or loved one. Objective: The aim of this study was to evaluate the toolkit, including a custom-designed journal, tools for photography-based experience sampling, and heart rate tracking, which enables caregivers to collect and reflect on their positive and negative daily experiences in situ. Methods: A 2-week field study with informal caregivers (N=7) was conducted to evaluate the Co-Care-KIT and to capture their daily personal emotional experiences. The collected data samples were analyzed and used for collaborative dialogue between the researcher and caregiver. Results: The results suggest that the toolkit (1) increased caregivers’ awareness of their own well-being through in situ reflection on their experiences; (2) empowered caregivers to share their identities and experiences as a caregiver within their social networks; (3) enabled the capturing of particularly positive experiences; and (4) provided caregivers reassurance with regards to their own mental health. Conclusion: By enabling capturing and collaborative reflection, the kit helped to gain a new understanding of caregivers’ day-to-day needs and emotional experiences.
Objective: The issues surrounding a patient's terminal phase of cancer and the imminent death of the individual represent a major family crisis affecting all its members. The goal of this study was to assess the prevalence of psychological morbidity in family caregivers of persons with terminal cancer in terms of psychological distress, depression, anxiety, somatization, and complicated anticipatory grief, and to determine which factors may influence these responses. Method: One hundred and twelve family caregivers of individuals with terminal cancer completed an assessment protocol comprising the Brief Symptom Inventory (depression, anxiety, somatization, and a computed score for global distress), the Marwit-Meuser Caregiver Grief Inventory - Short Form (anticipatory grief), the Family Inventory of Needs (importance and satisfaction of needs), and the Systemic Clinical Outcome Routine Evaluation -15 (family functioning). Prevalence of psychological morbidity was determined through descriptive and frequency statistics. Predictors of psychological morbidity were ascertained through structural equation modelling methods. Result Regarding the prevalence of psychological morbidity in family caregivers, 66.1% reported high levels of distress, 68.8% showed high risk of depression, 72.3% showed high risk of anxiety, 50.9% reported high levels of somatization, and 25.9% showed high risk of complicated anticipatory grief. It was found that the predictors of age, gender, relationship to the family member with terminal cancer, the caregiving role played (i.e., primary vs. nonprimary), the satisfaction of needs by healthcare professionals, and family functioning play an important role in terms of one's risk of developing psychological morbidity. Significance of results This study revealed an alarming prevalence of psychological morbidity in family caregivers of individuals living with terminal cancer, making it crucial to move forward from a patient-centered approach to a family-centrad approach to reduce the risk of family maladjustment when facing the imminent death of a family member and to prevent postdeath unadjusted responses.
Objectives: The expected rise in the number of persons with dementia is accompanied by an increasing interest in understanding and reducing the stigmatic beliefs experienced by family caregivers of persons with the disease. While researchers have recently distinguished between family caregivers' perceptions of public stereotypes (i.e., courtesy stigma) and the internalization of these perceptions (i.e., affiliate stigma), no study has yet assessed the characteristics of dementia caregivers who internalize courtesy stigma and how they do so. The aim of this study was to examine the characteristics of family caregivers of persons with dementia who internalize courtesy stigma, and to investigate this internalization process.; Method: Structured face-to-face interviews were conducted with 175 Israeli Arab family caregivers (87.4% female; 71.4% adult children; mean age = 54.28) for persons with Alzheimer's disease.; Results: Overall, half of the participants reported experiencing affiliate stigma as a result of taking care of a relative with dementia. Regression analyses showed that lower educational level, increased courtesy stigma and lower levels of social support were the main predictors of affiliate stigma. Social support partially mediated the association between courtesy and affiliate stigma.; Conclusion: Our findings provide important insights for the conceptual understanding and the development of interventions to reduce stigma among family caregivers of persons with dementia.;
Seizure 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). We 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. Consecutive 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. Overall, 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 (r E = − 0.577, r PNES = − 0.025); seizure severity and carer depression (r E = 0.248, r PNES = − 0.333) and mental wellbeing (r E = − 0.356, r PNES = 0.264); patient depression and carer anxiety (r E = 0.387, r PNES = − 0.266); and patient anxious attachment and carer anxiety (r E = 0.382, r PNES = 0.155). Clinically 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. • Carers for people with seizure disorders experience high levels of depression and anxiety. • Mental wellbeing in this group correlates with relationship conflict, and patient and carer attachment styles. • These associations differ between carers for people with epilepsy and for those with psychogenic non-epileptic seizures.
Background: Sleep disturbance is common and can have harmful psychological and physical effects. While sleep problems in children with Down syndrome (DS) have received a reasonable amount of attention, very little has been written about this topic in adults with DS.; Method: The present study consisted of an online survey completed by 100 family carers of adults with DS.; Results: High rates of sleep problems of different types were reported in the adults with DS comparable to those found in children with DS in previous research. Significant associations were found between sleep problems and body mass index, excessive daytime sleepiness and a range of health and psychological problems. Low rates of treatments for sleep problems were reported. The majority of family caregivers felt their own sleep was affected.; Conclusions: Sleep problems in adults with DS are common and varied. Assessment and treatment of such problems are likely to improve quality of life.
Aims and objectives: To explore the impact of early‐stage dementia on care recipient/carer dyads' confidence or belief in their capacity to manage the behavioural and functional changes associated with dementia and to access appropriate support networks. Background: Living with dementia has predominantly been explored from the carer perspective and focused on the stress and burden of supporting a person with dementia. There has been a shift towards a more positive discourse to accommodate the role of self‐efficacy in supporting self‐management by people living with dementia. However, little has been reported on the dyadic experience of self‐efficacy in managing life with dementia. Design: A qualitative study using an interpretive descriptive approach. Semi‐structured interviews were conducted with 13 dyads in the early stages of dementia. The collected data underwent a process of thematic analysis. The study followed the COnsolidated criteria for REporting Qualitative research (COREQ) checklist. Results: Dyadic adjustment to dementia was dynamic, involving shifts between loss and adaptation. Threats to self‐efficacy, declining autonomy and stigma, were significant causes of concern for both members of the dyad. Dyadic self‐efficacy was demonstrated through recognition of and adaptation to dementia‐related changes and development of coping strategies to integrate impairment into everyday life. Conclusions: Solution‐focused approaches that improve knowledge and skills enable the dyad to adjust. The considerable impact of stigma on self‐efficacy indicates that supportive disclosure strategies developed in mental health may also have a role to play in dementia interventions. Relevance to clinical practice: Nurses play a significant role in advising and supporting care recipient/carer dyads with dementia, and a better understanding of the dyadic perspective provides them with essential information to support self‐management. A proactive approach including information and support, offered at the beginning of the condition/care trajectory, may have the potential to delay progression into more dependent stages.
Introduction: Many studies have investigated the correlates of affiliate stigma among family caregivers of people with mental illness (PWMI). Thus far, no systematic review or meta‐analysis has been conducted to synthesize these results. Aims/Question: This review aims to identify the correlates of affiliate stigma among family caregivers of PWMI. Method: We searched four databases including PubMed, PsycINFO, EMBASE and Web of Science for studies that investigated the association of affiliate sigma with socio‐demographic, psychosocial and disease‐related factors. Results: Twenty‐two studies including 3,381 participants met the inclusion criteria. Eighteen variables were included for the meta‐analysis. For disease‐related characteristics, only "disease attribution" and "care time/day" were associated with affiliate stigma. For psychosocial characteristics, "support from others," "burden," "depression," "stress," "distress" and "face concern" were related to affiliate stigma. Discussion: This review is the first to assess the association of affiliate stigma with other characteristics of interest. However, the findings are limited due to a very small number of studies. Researchers should conduct in‐depth study in this area and improve the quality of the literature. Implications for practice: Health‐focused interventions for family caregivers such as respite care, self‐help groups, online support program and psychosocial education can mediate the impact of affiliated stigma.
Background: Dementia is prevalent among older adults and frequently causes dependence on family caregivers. Caregivers may experience a form of stigmatization called affiliate stigma that negatively affects their mental health. The current study sought to establish the psychometric properties of a tool to measure affiliate stigma among Iranian caregivers. Methods: Overall, 541 caregivers of older people with dementia were included in this cross sectional study. Several measures were used to assess the psychometric properties of the Affiliate Stigma Scale (ASS) including the Zarit Burden Interview (ZBI), Hospital Anxiety and Depression Scale (HADS), Short Form 12 (SF-12), Rosenberg Self-Esteem Scale (RSES), and Multidimensional Scale of Perceived Social Support (MSPSS). Convergent and discriminate validity were examined.Exploratory and confirmatory factor analyses were utilized to assess the factor structure of the Ass and a Rasch model was used to evaluate the measurement functioning of the scale. Results: Factor loadings ranged from 0.69 to 0.83 and test-retest reliability from 0.72 to 0.89.Item difficulty ranged widely from -0.66 to 0.89. No considerable differential item functioning (DIF) was found across gender. Confirmatory factor analysis confirmed the three cognitive,effective, and behavioral dimensions of the scale (comparative fit index [CFI]=0.931 to 0.995,root mean square error of approximation [RMSEA]=0.046 to 0.068). Internal consistency was acceptable (Cronbach's α: 0.88 to 0.94). Significant and positive relationships were found between affiliate stigma and depression, anxiety, and care giving burden (β =0.35 to 0.46). Conclusion: The ASS is a psychometrically valid measure for assessing affiliate stigma in Iranian caregivers of people with dementia. Application of this tool among other caregivers, language sand cultures deserves further study.
Background: Family members frequently provide long-term care for stroke survivors, which can lead to psychological strain, particularly in the presence of cognitive decline.; Objectives: To profile anxious and depressive symptoms of family caregivers at 5 years post-stroke, and to explore associations with stroke survivor cognitive decline.; Methods: As part of a 5-year follow-up of the Action on Secondary Prevention Interventions and Rehabilitation in Stroke (ASPIRE-S) cohort of stroke survivors, family members completed a self-report questionnaire. Symptoms of anxiety and depression were assessed using the HADS-A and CES-D. Cognitive decline in stroke survivors was assessed from the caregiver's perspective using the IQCODE, with cognitive performance assessed by the MoCA. Data were analyzed using logistic regression models.; Results: 78 family members participated; 25.5% exhibited depressive symptoms, 19.4% had symptoms of anxiety. Eleven stroke survivors (16.7%) had evidence of cognitive decline according to both the IQCODE and MoCA. Family members of stroke survivors with cognitive decline were significantly more likely to report symptoms of depression [age-adjusted OR (95% CI): 5.94 (1.14, 30.89)] or anxiety [age-adjusted OR (95% CI): 5.64 (1.24, 25.54)] than family members of stroke survivors without cognitive decline.; Conclusions: One-fifth of family caregivers exhibited symptoms of anxiety and one-quarter symptoms of depression at 5 years post-stroke. Stroke survivor cognitive decline was significantly associated with both depressive and anxious symptoms of family caregivers. Family members play a key role in the care and rehabilitation of stroke patients; enhancing their psychological wellbeing and identifying unmet needs are essential to improving outcomes for stroke survivors and families.
This review systematically reviewed the therapeutic effects for people with LTCs and their family caregivers learning MBIs [Mindfulness-based interventions] together in a partnership. The review asked what changes in psychological wellbeing or interpersonal factors do people with LTC and their family caregivers experience when learning MBI together in a partnership.
Families play a crucial role in determining the mental health of the autistic individual(s) they are caring for. However, the stigma associated with autism can impair caregiver health. To investigate this, empirical evidence pertaining to stigma's impact on informal caregivers' mental health was systematically reviewed. All twelve included studies (n = 1442 informal caregivers) consistently reported the impact of autism related stigma upon caregiver mental health to be significant, meaningful and complex. A new theoretical framework describing the relationship between stigma and caregiver mental health is constructed. Moderating variables include those both changeable through intervention (e.g. hopelessness, self-esteem, self-compassion) and not changeable (gender, culture, financial burden and time since diagnosis). Implications and recommendations for professionals, interventions and future research are proposed.
Palliative and hospice care aims to improve quality of life of patients' relatives, but still little is known about their specific problems and needs. We present a comprehensive literature update. Narrative review to present an expert overview of peer-reviewed, English-written original research publications and reviews on psychosocial and existential problems, supportive needs as well as interventions for relatives during the patients' disease trajectory published between January 2017 and November 2018. A total of 64 publications were included. Relatives report high rates of psychological and existential distress, burden and psychological morbidity during the total disease trajectory of the patient. In addition, relatives report an alarmingly high number of unmet needs with information being the central issue. Relatives' problems and needs are part of complex systems influenced by various socio-demographic factors and patient⁻relatives-interactions and dependency between different psychological phenomena. First support interventions for relatives during disease trajectory have proven feasible and secondary data from randomized studies suggest beneficial effects of providing early palliative care also for relatives. Relatives should be addressed to a still larger extent in the daily practice of palliative and hospice care, thus further research to reveal more detailed systematic information is needed to improve relatives' psychological burden and quality of life.
A cross-sectional descriptive correlation study was performed to investigate the risk of posttraumatic stress disorder (PTSD) among 300 family caregivers of individuals with schizophrenia or bipolar disorder and examine the relationship between perceived social support and risk of PTSD. The Arabic version of the PTSD Checklist for DSM-5 (APCL-5) was used to investigate risk of PTSD; the Arabic version of the Multidimensional Scale of Perceived Social Support was used to measure perceived social support. Mean score of the APCL-5 was 46.1, indicating risk of PTSD among family caregivers. A negative moderate correlation was found between risk of PTSD and perceived social support. The caring process is demanding and highly stressful, putting family caregivers at risk for PTSD. Social support is crucial in decreasing this risk. [Journal of Psychosocial Nursing and Mental Health Services, xx(x), xx-xx.].; Copyright 2019, SLACK Incorporated.
Purpose: The burden of caring for a family member or friend can have a negative impact on caregiver health and well-being, yet caring can also have positive consequences. Understanding the factors that may enhance caregiver well-being is merited.; Methods: We used data gathered from the European Quality of Life Survey (EQLS). Using complete case analysis followed by multiple imputation analysis, a series of multilevel regression models were developed to systematically explore the role of three distinct blocks of factors in predicting caregiver well-being as measured by the WHO-5 well-being index: (1) sociodemographic and health factors, (2) care and burden-related factors, and (3) psychological and social appraisals. Differences between frequent caregivers and the general population were also compared on all measures.; Results: 36,908 respondents took part in EQLS, with 4171 (11%) identifying as frequent carers. While frequent caregivers reported lower well-being compared to the remaining population, most were happy with the amount of time spent caring. Our model explained approximately 32% of variance in well-being scores. After examining the role of known risk factors, all positive psychological appraisals were associated with higher well-being (p < .001). In order of magnitude these were optimism, perceived autonomy, sense of purpose, resilience, and perceived levels of social inclusion. Self-rated health was the strongest predictor of well-being while female carers and those with high levels of various burden measures reported lower well-being.; Conclusions: Findings suggest that caregiver well-being is influenced by more than simply the burden of care. As well as attempting to reduce burden, interventions aimed at supporting caregivers could focus on fostering more positive appraisals to enhance well-being in this group.
Background: Alzheimer's disease and related dementias are irreversible, progressive brain disorders that slowly destroy memory, language, problem solving, and cognition. In the United States, dementia is the fifth leading cause of death for people age 65 years and older. Early diagnosis could have important benefits stigma related to dementia remains a significant impediment to diagnosis, treatment, and accessing services. While a growing body of research documents the existence and negative outcomes of stigma, less is known about how dementia-related stigma produces ill effects.; Aims: The purpose of this study was to use qualitative methods to explore how stigma manifests within families from the perspective of family caregivers of people with dementia.; Method: Using a grounded theory approach, we interviewed 13 family caregivers of people with dementia.; Results: Shame emerged as the central theme experienced by family caregivers of people with dementia. Attempting to manage shame, produced three categories of responses: (1) silencing and not calling attention to the symptoms, (2) concealing the diagnosis, and (3) shunning and avoiding contact.; Conclusions: Shame may be an underlying mechanism by which stigma is enacted and perpetuated, resulting in caregivers' isolation and delay in access to diagnostic and supportive services. Efforts to dispel the misconception that dementia is a shameful disease may be one way to diminish stigma.
This editorial discusses the availability of resources to support carers and recommends a better focus on family-centred care.
Rationale: Family members of critically-ill patients hospitalized in the intensive care unit (ICU) often become caregivers and they are at risk to develop adverse psychological outcomes. There is a need to understand the psychological impact of critical illness on family caregivers.; Objectives: The aim of this systematic review is to document the prevalence of depression, anxiety, and posttraumatic stress disorder (PTSD) in family caregivers of critically-ill patients and identify potential risk factors for psychological outcomes to inform clinical and future research recommendations.; Methods: A literature search for psychological outcomes for family caregivers of critically-ill patients was conducted. A total of 1,148 studies from PsycINFO, CINAHL, Web of Science, SCOPUS and Medline were identified.; Results: Forty studies met inclusion criteria and were included in the review. The prevalence of psychological outcomes in family caregivers ranged from 4% to 94% for depression, 2% to 80% for anxiety, and 3% to 62% for PTSD. Caregiver depression, anxiety, and PTSD decreased in most studies that assessed longitudinal outcomes. Common risk factors identified for adverse psychological outcomes included younger caregiver age, caregiver relationship to the patient, lower socioeconomic status, and female sex.; Conclusions: The prevalence of depression, anxiety, and PTSD varies greatly across studies of family caregivers of critically-ill patients. This finding highlights the need for more systematic investigations of psychological outcomes and the implementation of clinical interventions to prevent or reduce depression, anxiety, and PTSD in family caregivers of critically-ill patients.
Children who have parents with any kind of illness may become young carers who take a responsibility not expected of children for household tasks, or personal or emotional care for parents and siblings. So far, little is known about children in Sweden who are at risk of becoming young carers. The aim of this article is therefore to explore the extent and impact of children's caring activities as reported in a pilot study by a sample of children in Sweden. A number of international questionnaires measuring the amount of caring activities, impact of caring, quality of life, and psychological well‐being were translated and combined into a survey. The pilot survey was completed by 30 children 10–18 years of age. Also, when completing the survey, the children were interviewed concerning their experiences of caregiving. The participants report on a group level emotional symptoms such as fear and nervousness above the clinical cut‐off value. They also rate a lower level of caring compared with findings from the United Kingdom, but they report a higher degree of negative impact of caring than young carers in the United Kingdom.
Family caregivers (FCs) of people with mental illness (PMI) experience caregiving-related distress. These challenges tend to be greater for Asian American families due to acculturative stress and structural barriers to services. However, little is known about caregiving-related experiences among FCs of PMI within a cultural context. By using an exploratory approach, we examined the experience of caregiver distress and the influence of cultural values on caregiving in European American and Chinese American FCs. In collaboration with community-based agencies, a combination of convenience and snowball sampling methods were used to recruit Chinese American and European American caregivers who co-reside with PMIs. Two focus groups with each ethnic group with 57 participants (30 Chinese and 27 European American) were conducted. Thematic analysis indicates that FCs experience intense emotions, health/mental health problems, and a negative impact on their personal/social lives. Whereas Chinese American FCs reported shame, lack of knowledge, and over-protectiveness of PMIs, European American FCs reported the need for advocacy on behalf of the PMI. Findings indicate a need for: 1) greater awareness of the caregiving experience on wellbeing of FCs; 2) an understanding of how cultural values may influence caregiver experience; and 3) developing culturally relevant prevention and intervention services that can support FCs from diverse cultural contexts.
Objective: Delirium superimposed on dementia (DSD) is common and associated with adverse outcomes. Current evidence indicates that some patients with dementia may recall delirium with distress for them and their caregivers. The aim of this study is to identify predictors of distress in informal caregivers of older patient with DSD.; Methods: A total of 33 caregivers of 33 patients with DSD were interviewed 3 days after the resolution of delirium (T0) and at 1-month follow-up (T1) to describe their level of distress related to the delirium episode. A linear regression was used to identify predictors of caregivers' distress at T0 and T1 defined a priori: age, sex, level of education, employment status, delirium subtypes, delirium severity, type and severity of dementia, and the time spent with the patient during the delirium episode.; Results: Caregivers were mostly female (81%), 59 (± 13.0) years old on average. The predictors of distress at T0 were the patient's severity of both dementia and delirium. Moderate dementia was associated with lower distress, whereas higher delirium severity was associated with greater distress. At 1-month follow-up, the predictors of distress were the age of caregiver and time spent in care; the distress level was higher when caregivers were older, and they spent less time with their loved one.; Conclusions: These preliminary findings underline the importance of providing continuous training and support for the caregivers, especially in coping strategies, in order to improve the care of DSD patients and prevent the caregivers' distress in long time period.
Background: Informal caregiving is associated with a number of negative effects on carers' physical and psychological well-being. The salutogenic theory argues that sense of coherence (SOC) is an important factor in psychological adjustment to stress. The main aim of this study was to systematically review current evidence on the association between SOC, burden and mental health outcomes in informal carers. Method: A systematic search was carried out up to September 2017 in the following databases: PubMed, CINAHL (EBSCO), PsychInfo (OVID) and Scopus. Studies were included if they evaluated the relationship between sense of coherence and subjective caregiver burden and/or mental health outcomes, specifically symptoms of depression and anxiety. Meta-analyses were performed and subgroup analyses were carried out to explore if methodological factors influenced findings. Results: Thirty-five studies were included in the meta-analysis, which provided 40 independent samples with 22 independent comparisons for subjective caregiver burden, 26 for symptoms of depression and 7 for symptoms of anxiety. Higher levels of SOC were associated with lower levels of subjective caregiver burden and better mental health outcomes. Publication bias did not change the estimate of the effect. Limitations: Most of the studies included in this review were cross-sectional. Conclusions: Findings suggest that SOC is an important determinant of carer well-being and may protect carers from high levels of psychological distress and caregiver burden.
Purpose: Pain is a multifactorial and subjective experience. Psychological and social factors can modulate it. This study analyzed whether and how prolonged cancer pain is related to the social-relational environment's characteristics. Specifically, we investigated whether the caregiver's emotional support, his/her compassion ability or, on the contrary, his/her personal distress, associates with the patient's pain level. Methods: The sample consisted of 38 cancer patients suffering from pain and 38 family caregivers. The patients completed the McGill Pain Questionnaire (MPQ), the Balanced Emotional Empathy Scale (BEES) referred to caregiver, and an interview concerning the patient's perception of the caregiver's compassion level. Caregivers completed the distress thermometer (DT), the BEES, and an interview assessment of their compassion level. Results: Caregiver's distress level correlated with patient's pain intensity (r = .389; p = .028). Exploratory linear regression confirmed this association (R2 = .151; F (1, 30) = 5.33; p = .028; β = 0.389). The number of problems reported by caregivers correlated with the patients' pain level (r = .375; p = .020), which was verified in a regression analysis (R2 = .140; F (1, 36) = 5.88; p = .020; β = 0.375). In particular, the caregiver's amount of emotional problems was related to patient's pain level (r = .427; p = .007); this result was reaffirmed in a regression (R2 = .182; F (1, 36) = 8.03; p = .007; β = 0.427). Conclusions: Our results show an association between social suffering, as indicated by the caregiver's emotional distress and the patient's physical pain. The results also highlight high distress levels and emotional problems among caregivers. The work emphasizes the need of a bio-psychosocial approach in managing cancer pain, along with the necessity to find effective interventions to fight emotional distress in family caregivers. The recovery of the caregivers' emotional resources could have beneficial implications on the patients' pain.
Using data from the China Health and Nutrition Survey (CHNS), this study investigated the impact of informal care on female caregivers' subjective well-being in China. We found that informal care significantly reduced the subjective well-being of female caregivers using the instrumental variable (IV) ordered probit model. Our results revealed that the care effect on subjective well-being was more significant for rural caregivers than for urban caregivers. The more hours or more recipients care was provided for, the greater the negative impact on subjective well-being. Based on these findings, we further identified the two channels of 'wealth' and 'health' through which informal care lowered subjective well-being. These results have implications for policy makers in overcoming the challenges involved in constructing and developing a supportive system of informal care in China. Highlights • Informal care significantly reduced the subjective well-being of female caregivers. • Care effects on subjective well-being were more significant for rural caregivers. • The more care given, the larger the negative impact on subjective well-being. • Caregiving reduced subjective well-being through lower wealth and worse health.
People with mental illness and their family caregivers often perceive public stigma, which may lead to stigma-related stress (or stigma stress). However, no instruments have been developed to measure this stress for family caregivers of people with mental illness. We modified an instrument that measures the stigma stress of people with mental illness (i.e., the cognitive appraisal of stigma as a stressor) and examined the psychometric properties of the scores of the newly developed instrument: the Family Stigma Stress Scale (FSSS). Primary family caregivers of people with mental illness in Southern Taiwan ( n = 300; mean age = 53.08 ± 13.80; 136 males) completed the FSSS. An exploratory factor analysis showed that the FSSS score had two factors; both factor scores had excellent internal consistency (α = .913 and .814) and adequate test-retest reliability ( r = .627 and .533; n = 197). Significant correlations between FSSS factor scores and other instruments supported its concurrent validity and the ability of the FSSS to differentiate between clinical characteristics, for example, having been previously hospitalized or not. The FSSS is a brief and effective measure of the stigma stress of family caregivers of people with mental illness.
Objective To develop new patient-reported outcome (PRO) measures to better understand feelings of loss in caregivers of individuals with traumatic brain injury (TBI). Design Cross-sectional survey study. Setting Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants Caregivers (N=560) of civilians with TBI (n=344) or service members/veterans (SMVs) with TBI (n=216). Interventions Not applicable. Main Outcome Measures Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) Feelings of Loss-Self and TBI-CareQOL Feelings of Loss-Person with Traumatic Brain Injury item banks. Results While the initial exploratory and confirmatory factor analyses of the feelings of loss item pool (98 items) potentially supported a unidimensional set of items, further analysis indicated 2 different factors: Feelings of Loss-Self (43 items) and Feelings of Loss-Person with TBI (20 items). For Feelings of Loss-Self, an additional 13 items were deleted due to item-response theory-based item misfit; the remaining 30 items had good overall model fit (comparative fit index [CFI]=0.96, Tucker-Lewis index [TLI]=.96, root mean squared error of approximation [RMSEA]=.10). For Feelings of Loss-Other, 1 additional item was deleted due to an associated high correlated error modification index value; the final 19 items evidenced good overall model fit (CFI=0.97, TLI=.97, RMSEA=.095). The final item banks were developed to be administered as either a Computer Adaptive Test (CAT) or a short-form (SF). Clinical experts approved the content of the 6-item SFs of the 2 measures (3-week test-retest was r =.87 for Feelings of Loss-Self and r =.85 for Feelings of Loss-Person with TBI). Conclusions The findings from this study resulted in the development of 2 new PROs to assess feelings of loss in caregivers of individuals with TBI; TBI-CareQOL Feelings of Loss-Self and TBI-CareQOL Feelings of Loss-Person with TBI. Good psychometric properties were established and an SF was developed for ease of use in clinical situations. Additional research is needed to determine concurrent and predictive validity of these measures in the psychological treatment of those caring for persons with TBI. Highlights • Feelings of loss are common in caregivers of persons with traumatic brain injury. • Two new self-report measures of caregiver feelings of loss were developed. • These self-report measures can help identify feelings of entrapment in caregivers.
To a large extent caregivers perceive stigma through their social and community interactions by virtue of their association with persons with mental health problems. Meanwhile, evidence on their strategies for coping with potentially undesirable experiences linked with stigma is limited. Using a descriptive qualitative approach, the present study explored affiliate stigma among mental health professionals and family caregivers of persons with mental illness. Data, collected through one-on-one interviews with 10 mental health professionals and 10 family caregivers, were examined with content analysis. Findings revealed that, although stigma attached to mental illness was largely directed at sufferers and family caregivers, professionals sometimes had their fair share. To manage the negative impact of stigma, caregivers adopted various strategies including the use of realisation, tactical or planned ignoring, self-motivation, acceptance and religion. Implications of the findings necessitate the intensification of mental health education among the general populace, which must be targeted at demystifying mental illness.
Background: The literature describes the obstacles to sufficient care faced by people with dementia and their informal caregivers. Although factors influencing access and utilisation are frequently studied, the body of knowledge lacks an overview of aspects related to influence. The frequently used Behavioural Model of Health Care Use (BM) could be used to structure and explain these aspects. An adaptation of the BM emphasises psychosocial influences and appears to enrich the understanding of the use of long-term care for dementia. Methods: We conducted a scoping review with the aim of providing an overview of the aspects influencing the access to and utilisation of formal community care in dementia. Our search covered the PubMed, CINAHL, Social Science Citation Index and PsychInfo databases, as well as grey literature. Two researchers assessed the full texts for eligibility. A data extraction form was developed and tested. We analysed the main topics investigated by the studies and mapped and described the investigated psychosocial aspects according to the BM after narratively summarising the findings. We used the Mixed Method Appraisal Tool (MMAT) to critically appraise the included studies. Results: A total of 94 studies were included: n = 55 with quantitative designs, 35 with qualitative designs and four with mixed methods. The studies investigated different services, mainly focusing on health care services. One third of the studies provided information regarding the severity of dementia. The most frequently investigated main topics were ethnicity and attitudes towards services. Psychosocial aspects were frequently investigated, although few studies considered the perspectives of people with dementia. Approximately half of the studies reported a theoretical framework. The adapted BM facilitated the structuring and description of psychosocial aspects. However, this instrument did not address topics beyond the scope of psychosocial aspects, such as sociodemographic characteristics. Conclusions: The access to and utilisation of formal community care for dementia can only be partly explained by individual influencing aspects. Therefore, a theoretical framework would likely help to describe this complex subject. Our findings indicate that the psychosocial categories of the adapted BM enriched the original BM, and that people with dementia should more often be included in healthcare service research to ensure a better understanding of the barriers to accessing formal community care.
Background: The challenges of providing care for someone with Alzheimer's disease and related dementias (ADRD) have been associated with increased stress, poor mental and physical health, social isolation, and financial distress. More recently, caregiving has been associated with high rates of suicidal and homicidal ideation, but the research on these phenomena is limited. The present study analyzed a sample of blogs written by family caregivers of people with ADRD to explore thoughts of suicide and homicide expressed by these caregivers. Methods: Blogs written by self-identified informal caregivers of people with ADRD were identified using a systematic search method and data were analyzed using a qualitative thematic analysis. Results: Five themes related to thoughts of suicide and homicide by caregivers and people with ADRD were derived from the analysis: (1) end-of-life care; (2) thoughts of death and euthanasia by the person with ADRD; (3) surrogate decision making; (4) thoughts of suicide by the caregiver; and (5) thoughts of homicide and euthanasia by the caregiver. Conclusions: The results capture the reality of suicidal and homicidal thoughts among family caregivers of people with ADRD, supporting calls for more research on these complex topics and highlighting the need for changes to clinical practice to prevent thoughts from becoming behaviors or actions.
Objectives To describe the prevalence and trajectory of family caregivers' post-traumatic stress symptoms during the first year after a patient's admission to the intensive care unit and identify associations between family caregivers' background characteristics, hope and post-traumatic stress symptoms. Research methodology/designs Family caregivers of intensive care unit patients (n = 211) completed questionnaires at patient admission to the intensive care unit and thereafter at 1, 3, 6, and 12 months. Mixed-model analyses were performed. Setting Four intensive care units in a university hospital in Norway. Main outcome measures Impact of Event Scale—Revised and Herth Hope Index. Results On admission, 54% of family caregivers reported high post-traumatic stress symptom levels, which decreased during the first six months after patient discharge. Lower levels of hope, being younger, having more comorbidities and being on sick leave were associated with higher post-traumatic stress symptom levels. Being the parent of the patient was associated with decreased post-traumatic stress symptom levels. Conclusions Family caregivers of intensive care unit patients report high levels of post-traumatic stress symptoms. Higher levels of hope were associated with fewer post-traumatic stress symptoms.
Background The use of eCare technologies could address some of the challenges related to demographic changes and decreased care potential. However, little is known about eCare technologies' potential in relation to the psychological outcomes for informal carers. Research aim This study aims to provide an overview of the psychological outcomes of eCare technologies use for informal carers. Methodology A scoping study was done, where peer reviewed papers, written in English, investigating the use of eCare technologies in informal care and their psychological outcomes on informal carers, were included. Non-scientific studies, and studies which focused on psychological counselling or training through the Internet or phone, were excluded. The data search was conducted in Academic search complete, Scopus, ProQuest and Science Direct databases, from 12 October 2017 to 17 October 2017 and included 16 studies published since 2013. Results Six psychological outcomes were identified (peace of mind, reassurance, anxiety, depression, stress and burden). Out of those psychological outcomes, positive outcomes of eCare technologies use for informal carers were counted 37 times and negative outcomes only eight, suggesting a positive prevalent pattern of eCare technologies use for informal carers. Conclusion The outlined interplay between the positive and negative psychological outcomes suggest that the use of eCare technologies in informal care warrants further research, for instance whether the eCare technologies actually fulfil older people and informal carers' needs.
Family caregivers of individuals with Alzheimer's disease and related dementias (ADRD) experience long-term mental health effects. Although caregivers who place relatives in long-term care (LTC) experience increased depression, anxiety, and chronic grief post-placement, interventions to improve caregivers' mental health have focused mainly on in-home care. Current researchers previously tested a group-based Chronic Grief Management Intervention (CGMI) with ADRD caregivers of individuals in LTC, with significant effects on caregiver mental health outcomes. In the current study, researchers adapted the CGMI for synchronous online video using Adobe® ConnectTM and iPads® (Chronic Grief Management—A Live-Streaming, Online Intervention [CGMI-V]). Specific aims were to test feasibility of digital delivery of the CGMI-V and explore caregivers' online group experience. Researchers assessed participants at baseline for sociodemographic information and at the end of the program with a four-item satisfaction survey and focus group. Digital delivery of the CGMI-V was feasible and caregiver satisfaction was high.
The physical and emotional toll of caring for someone who requires assistance moving, bathing, eating, grooming, and using the restroom increases if he or she is exhibiting signs of confusion or aggression. The literature is abundant with evidence that family caregivers are prone to anxiety and depression related to their duties. Additionally, burdened caregivers can put their patients at risk, as anxiety and depression can impact judgment. Caught in temporary situations that can seem endless, many caregivers experience mental health issues related to social isolation, financial concerns, and physical exhaustion. Here, Mathias explores the psychological impact of providing end-of-life care for a loved one and offers tools to assess and alleviate caregiver burden.
Background: Caregivers play a crucial role in the clinical evolution of patients with schizophrenia. In order to optimize their support, it is necessary to adjust it according to the phase and severity of the patient's illness. However, little interest has been given in the experience of family caregivers as a function on disease progression. Objectives: The objective of this study was to explore the experiences of family caregivers of patients with schizophrenia at different stages of the disease. Materials and methods: Twelve family caregivers of schizophrenia patients at different stages of the disease e.g. First Psychotic Episode (n = 4), Relapse (n = 4), and Remission (n = 4) participated in the study. Each caregiver was interviewed for about an hour by a psychologist (the same for all) using an interview guide. This interview guide included key themes highlighted in the literature: family burden, stigma, potential gains in caregiving, and ways to cope with the disease. After retranscription, the research interviews were analyzed with the Alceste method in order to help reading and systematizing the data. Results: The qualitative analysis allowed to emerge representations, emotions and practices characteristic of each group. Thus, the interviews with the caregivers of the group First Psychotic Episode were marked by the confrontation with the psychiatric institution. This world was frightening for them: firstly because it was foreign, but also because the representations they associated with schizophrenia were often marked by stigmatization. Hence the shock of the diagnostic announcement, the pain related to the awareness of the disorder of their close relative and the worry about a future that has just darkened. In the Relapse group, caregivers expressed despair and disappointment about the new hospitalization of their relative. Some also expressed anger, often directed against the mental health care system, especially when the subjects didn't feel heard in their request. Finally, the speech of the caregivers of the Remission group showed a reconstruction process: the family go back to its daily life, not “despite” but “with” the patient's disease and its consequences. A new balance had been established, including better relations with their close relative with schizophrenia. The caregivers’ speech in the latter group also included some key components of the recovery process, such as accepting the mental illness, seeing it positively, perceiving gains related to illness and caregiving, and hope for the future. The clinical implications of these results are discussed. In particular, ideas for improving the caregivers’ support in psychiatric emergency units are proposed. Conclusions: The data collected in this study provide valuable insights into the experiences of those who “live with” a close relative with schizophrenia. Moreover, these data indicate that families would also experience a subjective recovery process comparable to that described in the literature on schizophrenia. In addition to its exploratory aspect, the results of this study suggest supportive strategies adapted to the concerns of families at different stages of the evolution of the patient's illness.
Objective In response to the well‐documented need for evidence‐based cancer caregiver support, we examined the feasibility of problem‐solving therapy for family caregivers of cancer patients receiving outpatient palliative care and investigated the impact of problem‐solving therapy on family caregivers' anxiety, depression, and quality of life. Methods We conducted a feasibility study of a structured problem‐solving therapy intervention delivered to family caregivers of cancer patients receiving outpatient palliative care from an academic health center in the Midwestern United States. Participants (N = 83) were randomly assigned to receive usual care or usual care plus a problem‐solving therapy intervention, which was delivered over three sessions via web‐based videoconferencing or telephone. Descriptive statistics were used to determine feasibility relative to recruitment, retention, and fidelity to core intervention components. Outcome data were analyzed using ordinary least squares multiple regression. Results Problem‐solving therapy for family caregivers of patients with cancer was found to be highly feasible in the outpatient palliative care setting. Caregivers who received problem‐solving therapy reported less anxiety than those who received only usual care (P = 0.03). No statistically significant differences were observed for caregiver depression (P = 0.07) or quality of life (P = 0.06). Conclusions Problem‐solving therapy is a feasible and promising approach to reducing cancer family caregivers' anxiety in the outpatient palliative care setting. Further testing in multiple sites is recommended.
Aims: Informal care, which is unpaid and often provided by family and friends, is the primary source of aged care in New Zealand. In addition to financial costs there are known psychological costs of being a carer, including poor mental health.; Methods: This research aimed to interview a group of New Zealand carers and describe their rates of depression and anxiety, their motivations for providing care, costs of care and their experience of aggression. Interviews used standardised questions and were conducted over the phone.; Results: Results are reported from interviews of 48 carers and suggest this group have elevated symptoms of depression and anxiety. Most of the carers are partners or children of the carees and likely do the caring out of love. Unpaid family carers experience low levels of aggression. Carers reported personal and social restriction, and physical and emotional health the most burdensome aspect of being a carer.; Conclusions: Carers of the elderly in New Zealand show elevated levels of distress. Higher levels of emotional support are needed for New Zealand carers. If the health system continues to rely on unpaid carers more should be done to support them.
Introduction: Caring for a family member with a long-term illness is a significant source of chronic stress that might significantly accelerate the cognitive ageing of informal caregivers. Nevertheless, the absence of a defined theoretical body of literature on the neuropsychology of this population makes it difficult to understand what the characteristic neuropsychological deficits of these caregivers are.; Aims: The main aim of this study is to carry out a systematic review of studies of cognitive deficits present in informal caregivers of people with several chronic pathologies, and analyse the effects of cognitive-behavioural interventions on caregivers' cognition.; Methods: The scientific literature was reviewed following the PRISMA quality criteria for reviews using the following digital databases: PubMEd, PsycINFO, and Dialnet.; Results: Identification of 2046 abstracts and retrieval of 211 full texts led to the inclusion of 38 papers. The studies showed heterogeneous results, but most of the cross-sectional studies reviewed that employed neuropsychological assessments concluded that informal caregivers reported a generalized cognitive deterioration, especially memory dysfunctions (i.e. learning verbal, visuospatial, and digit information). Moreover, they also presented low selective attention and capacity for inhibition, along with slow processing speed. Longitudinal studies confirmed that caregivers whose care situation was more prolonged showed a marked deterioration in their overall cognitive state, memory, processing speed, and vocabulary richness. However, although the patient's death does not seem to reverse the neuropsychological alterations in caregivers, cognitive-behavioural interventions that employ techniques to reduce stress levels, cognitive biases, and inadequate adaptation schemas seem to improve some of the aforementioned cognitive abilities.; Conclusions: Results from this synthesis and critical analysis of neuropsychological deficits in informal caregivers offer guidelines for diagnosing caregivers' cognitive status by including a test battery covering all the domains considered relevant. Finally, given the ability of cognitive behavioural interventions to improve cognition in caregivers, further studies on their long-term effects on caregivers are warranted. Chronic stress entails an acceleration of the cognitive ageing Cross-sectional studies concluded that informal caregivers reported a generalized cognitive deterioration Cognitive-behavioural interventions seem to improve cognitive abilities of caregivers.
Objective: To assess the association between perceived stigma and discrimination and caregiver strain, caregiver well-being, and patient community reintegration.; Design: A cross-sectional survey study of 564 informal caregivers of U.S. military service veterans of wars in Iraq and Afghanistan who experienced traumatic brain injuries or polytrauma (TBI/PT).; Setting: Care settings of community-dwelling former inpatients of U.S. Department of Veterans Affairs Polytrauma Rehabilitation Centers.; Participants: Caregivers of former inpatients (N=564), identified through next-of-kin records and subsequent nominations.; Interventions: Not applicable.; Main Outcome Measures: Caregiver strain, depression, anxiety, loneliness, and self-esteem; as well as care recipient community reintegration, a key aspect of TBI/PT rehabilitation.; Results: Family stigma was associated with strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration. Caregiver stigma-by-association was associated with strain, depression, anxiety, loneliness, and lower self-esteem. Care recipient stigma was associated with caregiver strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration.; Conclusions: Perceived stigma may be a substantial source of stress for caregivers of U.S. military veterans with TBI/PT, and may contribute to poor outcomes for the health of caregivers and for the community reintegration of the veterans for whom they provide care.
Background: Cancer and its treatment can result in psychological distress in both adults with cancer and in their family caregivers. This psychological distress acts as a significant adverse factor in patient-caregiver dyads. The study purposes included: (i) to assess anxiety and depression in adults with cancer and their family caregivers, and examine the dyadic relationship of anxiety and depression in patient-caregiver dyads; (ii) to investigate factors that may modify these relationships; and (iii) to explore the impact of anxiety and depression on patient-caregiver dyad quality of life (QOL).; Methods: This was a secondary analysis of a cross-sectional study. Participants consisted of 641 patient-caregiver dyads. Participants completed a survey assessing adults with cancer-related, family caregiver-related, and family-related variables using a demographic/clinical information sheet. In addition, anxiety/depression and QOL were assessed by using the Chinese version of the Hospital Anxiety and Depression Scale and SF-12 respectively. Data were analyzed by using descriptive statistics, Pearson correlations, subgroup analysis, and the Actor-Partner Interdependence Model.; Results: Nearly one-third of participants had experienced anxiety and depression. Adults with cancer and family caregivers experienced a similar degree of anxiety and depression. Correlations (r) of anxiety and depression between patient-caregiver dyads ranged from 0.25 to 0.32. Various factors influencing the anxiety and depression relationship between patient-caregiver dyads were identified, including adults with cancer-related (e.g., age, gender, marital status, level of being informed about the disease, different types of cancer and treatment), family caregiver-related (e.g., being the spouse of a patient, duration in their role as a family caregiver, and amount of time spent on caregiving each day), and family-related (family relationship pre- and post-cancer, financial burden on the family due to cancer treatment) variables. To some extent, both actor and partner effects were identified for anxiety and depression on the QOL of patient-caregiver dyads.; Conclusions: Study findings call attention to anxiety and depression, as well as related factors, in patient-caregiver dyads. The underlined essential components and focus of intervention, which will be developed to decrease psychological distress and improve QOL in patient-caregiver dyads, included individual characteristics of patient-caregiver dyads, family relationship, and anxiety and depression in their counterparts.;
During later life, older adults may be caregiving for people with late-onset mental health issues. The situation can alter family relationships and cause role transitions. This article offers three late-life mental health scenarios that require spouses or partners, adult children, and-or others to deal with an older adult family member's mood and behavior changes. Through case examples, the author explores geriatric depression, complicated grief, and provision of extended care for persons with severe mental illness, and highlights support for older care providers.
In this study, 16 family caregivers of patients with lymphoma were interviewed on their changing perceptions of hope. The changing process starts from diagnosis to the present treatment state. We found that the changing perception of hope can be divided into three stages: the stage of generalized hope focusing merely on treatment and passive hope focusing on harm-avoidance, the stage of specified hope and active hope aiming at comfort-seeking, and the stage of multifaceted hope. Family caregivers’ understanding of the past experience of and new information on the disease are the foundation of the perception of hope. The perception of hope in cancer patients’ family caregivers develops from “therapeutic hope” to “psychosocial hope,” shifting from “consequential hope” to “procedural hope.”
Objectives: To compare depression and psychological well-being between caregivers of schizophrenic patients and non-caregivers and to study the burden of caregiving as a relative risk for depression and psychological well-being.; Methods: This cross sectional comparative study was conducted at International Islamic university Islamabad from January to September 2017. Fifty informal caregivers of schizophrenic patients from 19 to 55 years of age were included in the study. The control group consisted of age and socio-economic status matched healthy volunteers who did not have any psychological or medical patient at home needing care and assistance. For measurement of study variables i.e., burden of caregiving, depression and psychological well-being, instruments used were Zarit Burden Interview (ZBI), The Beck Depression Inventory (BDI) and Warwick-Edinburgh Mental Well-Being Scale (WEMWBS) respectively.; Results: Results were analyzed using MANOVA followed by One-Way ANOVA. Findings indicated that informal caregivers of schizophrenia have greater depression and poor psychological well-being in comparison to the non-caregiver controls. Association of caregiving burden with psychological well-being and depression was calculated using Chi Square test and relative risk.; Conclusion: Caregiving adversely affects informal caregivers' mental health and wellbeing. Informal caregiving is a burden for the caregivers; health status of family members involved in caregiving should be routinely assessed to enhance their health-related quality of life.
Purpose: To explore the perspectives of people anticipated to be in their last year of life, family carers, volunteers and staff on the impacts of receiving a volunteer-provided befriending service. Patient participants received up to 12 weeks of a volunteer-provided befriending intervention. Typically, this involved one visit per week from a trained volunteer. Such services complement usual care and are hoped to enhance quality of life. Methods: Multiple case study design (n = 8). Cases were end-of-life befriending services in home and community settings including UK-based hospices (n = 6), an acute hospital (n = 1) and a charity providing support to those with substance abuse issues (n = 1). Data collection incorporated qualitative thematic interviews, observation and documentary analysis. Framework analysis facilitated within and across case pattern matching. Results: Eighty-four people participated across eight sites (cases), including patients (n = 23), carers (n = 3), volunteers (n = 24) and staff (n = 34). Interview data are reported here. Two main forms of input were described-'being there' and 'doing for'. 'Being there' encapsulated the importance of companionship and the relational dynamic between volunteer and patient. 'Doing for' described the process of meeting social needs such as being able to leave the house with the volunteer. These had impacts on wellbeing with people describing feeling less lonely, isolated, depressed and/or anxious. Conclusion: Impacts from volunteer befriending or neighbour services may be achieved through volunteers taking a more practical/goal-based orientation to their role and/or taking a more relational and emotional orientation. Training of volunteers must equip them to be aware of these differing elements of the role and sensitive to when they may create most impact.Trial Registration: ISRCTN12929812.
While involvement of family caregivers can play an important role in the recovery process of persons with serious mental illness (SMI), family caregivers often endure poor health and mental health issues due to caregiving-related distress. These challenges may be exacerbated for Vietnamese American families due to cultural values (e.g., familism and stigma). This qualitative exploratory study examined how Vietnamese American family caregivers of persons with SMI describe their caregiving experience. Using convenience and snowball sampling, the study recruited 21 participants who took part in two Vietnamese-language focus groups. Key findings of the study addressed three themes: (1) the influence of cultural and religious values on caregiving and mental health; (2) the negative impact of caregiving on caregivers’ wellbeing; and (3) the stigma attached to mental illness. The study offers useful insights to assist mental health practitioners in tailoring culturally appropriate and effective services for Vietnamese caregivers.
Background: Traumatic brain injury (TBI) will be the third largest killer by the year 2020 in the world. It creates the great amount of morbidity, disability, mortality, and reduces the psychosocial well-being of the patients and their caregivers. Hence, the current paper aimed to explore the psychosocial distress and caregivers' concerns in emergency and trauma care (ETC) setting. Methodology: This study adopted qualitative research design. All caregivers of TBI survivors were considered as a universe of the study. A total of 50 caregivers were recruited, and the predesigned questionnaire was administered. Depression, anxiety, stress scale was used to identify the caregivers' depression, stress, and anxiety. The simple thematic analysis was used to derive the themes from the verbatim data. Data were analyzed using SPSS version 21.0 (SPSS South Asia Pvt.Ltd, Bengaluru, Karnataka, India). Results: In the quantitative analysis, caregivers' mean age was found to be 45 (mean = 45.00 ± 13.83) years. Caregivers had experienced mild depression (13.36 ± 3.07), moderate anxiety (13.70 ± 3.03), and minimum stress (13.66 ± 2.98) levels. Qualitative results identified the following themes: difficulty in accessing timely care, uncertainty about the prognosis and future, family concerns and financial constraints, personal feelings and personal needs, and supportive care. Chi-square test revealed that there was no significant association between gender and depression (χ2 = 2.381 P < 0.12), anxiety (χ2 = 0.01 P < 0.92), and stress (χ2 = 0.235 P < 0.61) levels of caregivers. Conclusion: To accomplish, providing psychosocial care in ETC setting, the role of psychiatric social workers is pivotal.
Background Family carers of people living and dying with dementia experience grief. The prevalence, predictors and associated factors of grief in this population have been identified, and psychosocial interventions to decrease grief symptoms have been implemented. However, the effect of psychosocial interventions on family carers’ grief, loss or bereavement has not been examined. Objective To synthesize the existing evidence regarding the impact of psychosocial interventions to assist adjustment to grief, pre- and post-bereavement, for family carers of people with dementia. Inclusion criteria Types of participants Family carers of older persons with dementia (>65 years). Types of interventions Psychosocial interventions in health and social care facilities, and community settings designed to assist family carers adjust to grief during the dementia trajectory and/or following death. Comparisons No treatment, standard care or treatment as usual, or an alternative intervention. Types of studies Experimental and epidemiological study designs. Outcomes Grief in family carers including anticipatory, complicated and prolonged grief disorder measured with validated instruments. Search strategy A three-step strategy sought to identify both published and unpublished studies from 1995. Methodological quality Assessed by two independent reviewers using standardized critical appraisal tools from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). Data extraction The standardized data extraction tool from JBI-MAStARI was used by two reviewers independently. Data synthesis Statistical pooling of results was not possible due to the heterogeneity of the interventions and the outcome measures. Results Data were extracted from three studies. Study designs were a randomized controlled trial; a pre-test, multiple posttest quasi-experimental; and a single group, repeated measures. The interventions were multi-component, had durations of nine to 26 weeks and were delivered while care recipients were alive. All studies were undertaken in the United States. There were 327 family carers, of which 197 received a psychosocial intervention. Family carers were predominantly female (84.7%), Caucasian (73.4%) and caring for their spouse (44.3%). All care recipients had dementia; 68.5% had Alzheimer’s disease. Two studies measured anticipatory grief, and the third study reported normal and complicated grief. Moderate benefits to anticipatory grief were evident upon completion of the “Easing the Way” intervention (effect size -0.43, P = 0.03). After controlling for research design and control variables, for every hour increase in the interventions focusing on family carers’ cognitive skills, there were associated decreases in carers’ normal grief (parameter estimate [PE]= -0.81, P = 0.02) and complicated grief (PE=-0.87, P = 0.03). For every hour increase in the interventions focusing on carer behavior, there was an associated decrease in carers’ complicated grief (PE = -1.32, P = 0.04). For every hour increase in the interventions focusing on care recipient behavior, there was an associated decrease in carers’ complicated grief (PE = -2.91, P = 0.04). Conclusion There is little evidence upon which to base practice with regard to interventions to reduce any aspects of grief. Findings suggest that different pre-death interventions might be warranted depending upon a family carer’s unique clinical presentation and combination of risk factors. Cognitive skills training provided while the care recipient is alive may positively impact normal and complicated grief following the death of the care recipient. When the cognitive skills training is provided in conjunction with behaviorally oriented interventions that improve the wellbeing of the carer and care recipient, carers’ complicated grief symptoms may be reduced.
Background Intensive care nurses may have an important role in empowering families by providing psychological support and fulfilling the family's pivotal need for information. Aim To determine whether ‘education of families by tab’ about the patient’s condition was more associated with improved anxiety, stress, and depression levels than the ‘education of families by routine’. Research design A randomized control trial of 74 main family caregivers (intervention: 39; control: 35). Setting An adult intensive care unit. Main outcome measures Depression Anxiety Stress Scale, and Communication and Physical Comfort Scale. Results Although information need satisfaction was not significantly different between intervention and control groups, the former reported significantly better depression score on Depression Anxiety Stress Scale comparing to the control group (p<0.01;η2=0.09) with a medium effect size. Reduction of anxiety in the intervention group were clinically significant. Conclusion The results suggest that use of ‘education of family by tab’ is promising for intensive care nurses to provide psychological support for family members. More studies are needed to investigate this aspect of family care for better psychological support and information need satisfaction that contributes to the evidence-based practice of intensive care nursing.
Purpose/Objectives: To describe and examine the relationship between caregiver burden and the affective disorders anxiety and depression in caregivers of patients with brain metastases. Design: Cross-sectional, descriptive, correlational. Setting: Moores Cancer Center at the University of California, San Diego.Sample: 56 family caregivers of patients with brain metastases from solid tumors at other primary sites. Methods: Self-administered survey. Main Research Variables: Caregiver burden, anxiety, and depression. Findings: With the exception of caregiver esteem, no statistically significant relationships were noted between impact on schedule, a dimension of caregiver burden, and screening positive for affective disorders. Conclusions: Findings from this study support previous reports indicating that the odds of having anxiety and depressive symptoms are greater in family caregivers who report higher levels of caregiver burden. Implications for Nursing: The identification and management of caregiver burden are important considerations for a comprehensive cancer care program. Addressing the needs of the cancer caregiver, who is at heightened risk for various psychological, physical, financial, and social problems, is increasingly vital.
Background There is a lack of good-quality instruments measuring stigma experienced by family members of stigmatised people. Aims To develop a self-report measure of stigma among families of people with intellectual and developmental disabilities and examine associations between family stigma and other variables. Method The new Family Stigma Instrument (FAMSI) was tested with 407 family carers, 53% of whose offspring had an autism spectrum disorder in addition to intellectual disability. They also completed measures of subjective well-being, caregiver burden, self-esteem and social support. Results The FAMSI yielded a five-factor structure and had good reliability. Perceived family stigma, caregiver burden and subjective well-being were the strongest predictors of family stigma. Conclusions This instrument can advance our understanding of the impact of stigma on family members. It can also help us understand sociodemographic, psychosocial and contextual variables of both the carer and cared for person that may influence family members' experiences.
Backgrounds Breast cancer is a global threat to all women, especially those having close relatives with breast cancer. Women who were caregivers to relatives with breast cancer are more vulnerable to stress caused by the perception of heightened risk of cancer. Because health measures and breast health are affected by cultural beliefs and social status, information about breast cancer should consider the cultural beliefs and values of the society. Objectives This study explored the experiences of Iranian women who were caregivers to relatives with breast cancer. Methods In this qualitative content analysis study, 21 female caregivers of breast cancer patients were chosen by purposive sampling. Data were collected through interviews and analyzed using content analysis. Results Data analysis developed 3 categories: perception of the concept of risk, changing views about femininity, and management of perceived threat. Perception of the risk of breast cancer increased in caregivers, and they tried to manage the perceived threat. They considered the breast to be an important part of women's lives, and breast cancer in relatives changed their view of femininity. Conclusion Understanding the experiences of breast cancer family caregivers in different cultures can help in planning, counseling, and effective intervention.
With an ageing population, there are increasing numbers of experienced family carers (FCs) who could provide peer support to newer carers in a similar care situation. The aims of this paper are to: (i) use a cross-sectional study design to compare characteristics of volunteers and recipients of a peer support programme for FCs of people with dementia, in terms of demographic background, social networks and psychological well-being; and (ii) use a longitudinal study design to explore the overall impact of the programme on the volunteers in terms of psychological well-being. Data were collected from programmes run in Norfolk, Northamptonshire, Berkshire and four London boroughs between October 2009 and March 2013. The volunteer role entailed empathic listening and encouragement over a 10-month period. Both carer support volunteers (N = 87) and recipient FCs (N = 109) provided baseline demographic information. Data on social networks, personal growth, self-efficacy, service use and well-being (SF-12; EuroQol Visual Analogue Scale; Hospital Anxiety and Depression Scale; Control, Autonomy, Self-Realisation, Pleasure-19) were collected prior to the start of the intervention (N = 43) and at either 3- to 5 month or 10 month follow-up (N = 21). Volunteers were more likely than recipients of support to be female and to have cared for a parent/grandparent rather than spouse. Volunteers were also more psychologically well than support recipients in terms of personal growth, depression and perceived well-being. The longitudinal analysis identified small but significant declines in personal growth and autonomy and a positive correlation between the volunteers' duration of involvement and perceived well-being. These findings suggest that carers who volunteer for emotional support roles are resilient and are at little psychological risk from volunteering.
Background: The rapid increase in the number of elderly family caregivers underlines the need for new support systems. Internet-delivered psychological interventions are a potential approach, as they are easy to access for family caregivers who are often homebound with their care recipient. This study examines the relative effectiveness of an internet-based acceptance and commitment therapy (ACT) intervention or a standardized institutional rehabilitation program, first, in reducing depressive symptoms, and second, in improving the well-being and quality of life of elderly family caregivers compared to a control group receiving support from voluntary family caregiver associations. Methods: 156 family caregivers aged 60 or more are studied in a quasi-experimental study design that compares three groups of family caregivers (Group 1; n = 65: a guided 12-week web-based intervention; Group 2, n = 52: a standardized institutional rehabilitation program in a rehabilitation center; Group 3, n = 39: support provided by voluntary caregiver associations). Data collection is performed at three time-points: pre-measurement and at 4 months and 10 months thereafter. Caregivers’ depressive symptoms as a primary outcome, and perceived burden, anxiety, quality of life, sense of coherence, psychological flexibility, thought suppression, and personality as secondary outcomes are measured using validated self-report questionnaires. Physical performance and user experiences are also investigated. Between-group differences in the effects of the interventions are examined using multiple-group modeling techniques, and effect-size calculations. Discussion: The study will compare the effectiveness of a novel web-based program in reducing depressive symptoms and improving the psychological well-being of elderly family caregivers, or a standardized institutional rehabilitation program representing usual care and a control group receiving support offered by voluntary caregiver associations. The results will expand the knowledge base of clinicians and provide evidence on effective strategies to improve the mental health and overall quality of life of elderly family caregivers. Trial registration: The study was retrospectively registered in www.clinicaltrials.gov (ClinicalTrials.gov Identifier: NCT03391596 on January 4, 2018.
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Approximately 42.1 million family caregivers provided care to an adult with limitations in daily activities at any given point in time in the US in 2009 (Feinberg et al., 2011). ... Tailored online interventions that incorporate behavior change techniques such as stress management can have positive effects on caregivers' psychological well-being (Guay et al., 2017). Web-based mindfulness interventions (MBI)2 show promising results with beneficial health effects for healthy and clinical samples (de Vibe et al., 2012). A feasibility study and randomized controlled trial of the current online MBI showed positive significant results for families living with MI with enhanced levels of mindfulness and self-compassion, and decreased levels of caregiver burden and perceived stress (Stjernswärd and Hansson, 2016a; Stjernswärd and Hansson, 2017), combined with good usability and subjective value when using the program (Stjernswärd and Hansson, 2016b). Usability refers to the extent to which a specific user can use a specific product to reach specific goals, with purposefulness, effectiveness, and satisfaction, in a given context (ISO, 1998). Ease of access and flexibility of use were strong motivators for use (Stjernswärd and Hansson, 2016b). More studies are called for to verify the intervention's effectiveness for extended groups of caregivers. ...The current effectiveness study was designed as a randomized controlled trial with an experimental group and a wait-list control group (WLC), with measurements at baseline (T1), post intervention (T2) and at a 3-month follow-up (T3) on primary and secondary outcomes, and usability, in order to explore the effectiveness of the web-based mindfulness program in supporting caregivers to cope with their situation.
Objective: Informal caregivers often experience psychological distress due to the changing functioning of the person with dementia they care for. Improved understanding of the person with dementia reduces psychological distress. To enhance understanding and empathy in caregivers, an innovative technology virtual reality intervention Through the D'mentia Lens (TDL) was developed to experience dementia, consisting of a virtual reality simulation movie and e-course. A pilot study of TDL was conducted. Methods: A pre-test–post-test design was used. Informal caregivers filled out questionnaires assessing person-centeredness, empathy, perceived pressure from informal care, perceived competence and quality of the relationship. At post-test, additional questions about TDL's feasibility were asked. Results: Thirty-five caregivers completed the pre-test and post-test. Most participants were satisfied with TDL and stated that TDL gave more insight in the perception of the person with dementia. The simulation movie was graded 8.03 out of 10 and the e-course 7.66. Participants significantly improved in empathy, confidence in caring for the person with dementia, and positive interactions with the person with dementia. Conclusion: TDL is feasible for informal caregivers and seems to lead to understanding of and insight in the experience of people with dementia. Therefore, TDL could support informal caregivers in their caregiving role.
Objectives: Qualitative research has suggested that spousal experiences of discontinuity in their relationship with a person who has dementia (i.e. the relationship is experienced as radically changed) may contribute to heightened feelings of burden, entrapment, isolation, guilt and intolerance of behaviours that challenge. By contrast, continuity in the relationship may contribute to a greater sense of achievement and gratification from providing care. The present study served as a quantitative test of these suggestions. Method: A convenience sample of 71 spouses of people with dementia completed three questionnaires - the Zarit Burden Interview (ZBI), the Positive Aspects of Caregiving measure (PAC) and the Birmingham Relationship Continuity Measure (BRCM). Results: In accordance with the hypotheses, the experience of greater relationship continuity (higher BRCM scores) was correlated with fewer negative emotional reactions to caregiving (lower ZBI scores; rho = −.795) and more positive emotional reactions (higher PAC scores; rho = .764). Conclusions: The study provided some quantitative support for suggestions arising from qualitative research about how perceptions of continuity/discontinuity in the relationship may impact on the caregiving spouse's emotional well-being. Helping couples to maintain a sense of continuity and couplehood may assist their emotional adjustment to dementia.
Objectives: To quantitatively review the literature comparing depressed mood, anxiety and psychological distress in caregivers (CGs) of older adults with Alzheimer's disease (AD) with non-caregivers (NCGs) Methods: Eighteen independent studies comparing AD CGs (N = 2378) with NCGs (N = 70,035) were evaluated in accordance with the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines. Standardised mean differences (Hedges’ g) with associated 95% confidence intervals and p-values were calculated using a random-effects model. Results: Studies generally conformed to STROBE criteria in terms of their methodological and procedural detail, although data management issues that may contribute to methodological bias were identified. Pooled effect estimates revealed medium to large group differences in depression (gw = 1.01 [CI: 0.73, 1.29] p < 0.01) and anxiety (gw = 0.64 [CI: 0.39, 0.89] p < 0.01): AD caregivers reported higher symptom severity. Gender was a significant moderator: female caregivers experienced poor self-reported mood (gw = 1.58 [CI: 1.11, 2.05], p< 0.01), although this analysis was limited in power given the small number of contributing studies. Discussion: Caregivers of patients with AD experience poor mental health in comparison to the general population, with female caregivers being disproportionately affected. Further exploration of the psychosocial variables that contribute to these group differences is needed to inform effective support services and, in turn, help caregivers manage the emotional demands of AD.
Objective: The aim of this study was to update the literature on interventions for carers of people with dementia published between 2006 and 2016 and evaluate the efficacy of psychoeducational programs and psychotherapeutic interventions on key mental health outcomes (depression, anxiety, burden, and quality of life). Methods: A meta-analysis was carried out of randomized controlled trials of carer interventions using MEDLINE, PsycINFO, Scopus, and Cochrane Central Register of Controlled Trials. Results: The majority of studies were conducted in Western and Southern Europe or the United States and recruited carers of people with Alzheimer's disease or dementia grouped as a whole. The most commonly used outcome measures were depression and burden across studies. The updated evidence suggested that psychoeducation-skill building interventions delivered face-to-face can better impact on burden. Psychotherapeutic interventions underpinned by Cognitive Behavior Therapy (CBT) models demonstrated strong empirical support for treating anxiety and depression and these effects were not affected by the mode of delivery (i.e. face-to-face vs. technology). A modern CBT approach, Acceptance and Commitment Therapy (ACT), seemed to be particularly beneficial for carers experiencing high levels of anxiety. Conclusions: Future research needs to explore the efficacy of interventions on multiple clinical outcomes and which combination of interventions (components) would have the most significant effects when using CBT. The generalization of treatment effects in different countries and carers of different types of dementia also need to be addressed. More research is needed to test the efficacy of modern forms of CBT, such as ACT.
A caregiver’s attachment history with their parents may affect the thoughts, feelings, and behaviour they now have as they care for a parent with dementia. Participants were 77 daughters of a parent with dementia. The nature of participant conscious episodic memories of their parental figures and unconscious procedural knowledge of caregiving processes (secure base script knowledge) were identified as two aspects of the caregiver’s relationship history that may impact their involvement in care, relationship conflict, critical attitudes, and strain. The authors findings indicated that the nature of episodic memories of the caregiver relationship history with parental figures were significantly associated with stress and criticism of their parent. Greater unconscious procedural knowledge of the secure base script was associated with caregiver report of less conflict and less involvement in the caregiving tasks. Potential clinical implications of this pattern are also discussed.
Objectives: Little is known regarding the effect that caring for an individual with Mild Cognitive Impairment (MCI) has on health-related quality of life (HRQOL). The authors sought to identify the most important aspects of HRQOL related to caring for an individual with MCI. Methods: Six focus groups were conducted with caregivers of individuals with MCI (n = 32). Qualitative frequency analysis was used to analyze the data. Results: Findings indicated that caregivers most frequently discussed social health, including changes in social roles and an increased need for social support (51.2% of the total discussion). This was followed by mental health concerns (37.9%) which centred on anger/frustration, and a need for patience in the caregiving role, as well as caregiver-specific anxiety. Other topics included physical health (10.0%; including the impact that stress and burden have on medical heath), and caregivers’ cognitive health (0.9%; including memory problems in relation to caregiver strain, sleep disruption, and cognitive fatigue). Conclusions: Findings illustrate the multiple domains of HRQOL that are affected in individuals providing care for someone with MCI. Moreover, the findings highlight the need for extending support services to MCI caregivers, a group that is typically not offered support services due to the ‘less severe’ nature of an MCI diagnosis.
Family carers are a crucial resource in the care and support of people with dementia, but their motivations for caring can make the difference between success and failure. The author discusses his study of support workers' views on the way motivations can change and undermine carers' health.
Purpose: The aim of this study was to explore the impact of extended cancer survival on broader aspects of life and wellbeing such as occupational, financial and family life for patients with advanced cancer and their nominated informal caregivers. Methods: In-depth qualitative interviews were transcribed verbatim. A thematic framework was developed from an initial process of open coding and tested iteratively as new data were collected. Results: Twenty-four patient-caregiver dyads with advanced ovarian (9), melanoma (9) or lung cancer (6). Patients were aged 39–84 (median 62 years) and caregivers 19–85 (median 54 years). Caregivers were the partners/spouses (15), children (5), siblings (2) and friends (2) of patients. One particular theme, ‘uncertainty’, encompassed many issues such as planning for the future, providing for one’s family, employment and finances. Uncertainties were related to the timescale and trajectory of the disease and lack of control or ability to make plans. There were marked age effects. Accounts from within the same dyad often differed and patients and caregivers rarely discussed concerns with each other. Conclusions: Both patients and their informal caregivers were challenged by the uncertainties around living with advanced cancer and the lack of a defined trajectory. This impacted many diverse areas of life. Although distressing, dyads seldom discussed these concerns with each other. Implications for Cancer Survivors: Uncertainty is a recurrent issue for cancer survivors and their families impacting broad aspects of their lives and their ability to move forward; however, patients and caregivers in this study rarely discussed these concerns together. Uncertainty should be discussed periodically, together, and healthcare professionals could facilitate these discussions. The use of one or more ‘trigger questions’ in clinic appointments may provide an opportunity to start these dialogues.
Objective: The present study investigated subjective wellbeing amongst informal caregivers of people with wounds. Although under-investigated in the wound care literature, prior research indicates that informal caregiving results in a series of poorer outcomes for the caregiver. Methods: A convenience sample of 57 caregivers (16 male, 41 female, 19-84 years old), was recruited from public outpatient facilities. Participants completed measures of caregiving satisfaction, and subjective wellbeing, in addition to characteristics about themselves and the care provided. Results: The informal caregivers of people with wounds scored significantly lower on a measure of subjective wellbeing than the Australian population to a large effect (d = 1.11). Negative associations were identified between sleep and subjective wellbeing, while positive associations were found between caregiving satisfaction, and relationship quality with subjective wellbeing. Discussion: Caregivers displayed lower subjective wellbeing than the general population. Subjective wellbeing was related to sleep, satisfaction, and relationship quality. Future research should compare outcomes of the caregivers of people with different forms of wounds, and should determine if correlating stressors and mediators are causal to wellbeing.
Objectives: Illness representations shape responses to illness experienced by the self or by others. The illness representations held by family members of those with long-term conditions such as dementia influence their understanding of what is happening to the person and how they respond and provide support. The aim of this study is to explore components of illness representations (label, cause, control and timeline) in caregivers of people with dementia. Method: This was an exploratory study; the data reported came from the Memory Impairment and Dementia Awareness Study (MIDAS). Data from semi-structured interviews with 50 caregivers of people with dementia were analysed using content analysis. Results: The majority of caregivers gave accounts that appeared to endorse a medical/diagnostic label, although many used different terms interchangeably. Caregivers differentiated between direct causes and contributory factors, but the predominant explanation was that dementia had a biological cause. Other perceived causes were hereditary factors, ageing, lifestyle, life events and environmental factors. A limited number of caregivers were able to identify things that people with dementia could do to help manage the condition, while others thought nothing could be done. There were varying views about the efficacy of medication. In terms of timeline, there was considerable uncertainty about how dementia would progress over time. Conclusion: The extent of uncertainty about the cause, timeline and controllability of dementia indicated that caregivers need information on these areas. Tailored information and support taking account of caregivers' existing representations may be most beneficial.
Objectives: Gratitude is widely perceived as a key factor to psychological well-being by different cultures and religions. The relationship between gratitude and coping in the context of familial dementia caregiving has yet to be investigated. Design: This study is the first to examine the associations among gratitude, coping strategies, psychological resources and psychological distress using a structural equation modelling approach. Results: Findings with 101 Chinese familial caregivers of persons with dementia (mean age = 57.6, range = 40–76; 82% women) showed that gratitude was related to the greater use of emotion-focused coping (positive reframing, acceptance, humour, emotional social support seeking, religious coping) and psychological resources (caregiving competence and social support). Psychological resources and emotion-focused coping in turn explained the association between gratitude and lower levels of psychological distress (caregiving burden and depressive symptoms). Conclusion: The present results indicate the beneficial role of gratitude on coping with caregiving distress and provide empirical foundation for incorporating gratitude in future psychological interventions for caregivers.
As the population ages, there is a growing need for families and friends to support frail older adults in their home. Although many family caregivers report feeling satisfied with their caring role, a growing number of caregivers also feel physically, emotionally, and financially drained by the experience. The purpose of this literature review is to explore the experience of compassion fatigue (CF) among family caregivers, and to suggest strategies to combat this possible consequence of caregiving. A literature search was conducted using the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, and ProQuest databases. In total, six English peer reviewed articles related to CF and family caregiving were identified for review. Although there are few studies available on this topic, the literature suggests that CF is a concern for this group of caregivers. Caregivers were found to be consumed by a sense of responsibility to support their relatives, and they showed signs of hopelessness, guilt, resentment, and social isolation. To combat CF, we advocate implementing a systems management approach, which would bring together all healthcare stakeholders to support family caregivers and those they care for.
Background: Family carers provide vital support for patients towards end-of-life, but caregiving has considerable impact on carers’ own health. The scale of this problem is unknown, as previous research has involved unrepresentative samples or failed to fully capture caregiving close to death. Aim: To quantify level of psychological morbidity and general health among a census sample of carers of people with cancer at end-of-life, compared to population reference data. Design: National 4-month post-bereavement postal census survey of family carers of people who died from cancer, retrospectively measuring carers’ psychological health (General Health Questionnaire-12) and general health (EuroQoL EQ-Visual Analogue Scale) during the patient’s last 3 months of life. Participants: N = 1504 (28.5%) of all 5271 people who registered the death of a relative from cancer in England during 2 weeks in 2015 compared with data from the Health Survey for England 2014 (N = 6477–6790). Results: Psychological morbidity at clinically significant levels (General Health Questionnaire-12 ⩾4) was substantially higher among carers than the general population (83% vs 15%), with prevalence five to seven times higher across all age groups. Overall, carers’ general health scores were lower than population scores, median 75 (interquartile range, 50–80) versus 80 (interquartile range, 70–90), but differences were more marked at younger ages. Female carers had worse psychological morbidity and general health than male carers. Conclusion: Levels of psychological morbidity among family carers during end-of-life caregiving are far higher than indicated by previous research, indicating a substantial public health problem. Consistent assessment and support for carers to prevent breakdown in caregiving may produce cost savings in long term.
Aim To longitudinally describe stroke caregivers’ quality of life, anxiety, depression and burden and to identify predictors of stroke caregivers’ quality of life, anxiety, depression and burden. Background Caregivers have a key role in stroke survivor care and the first year of caregiving is the most challenging. To give tailored interventions, it is important to capture changes and identify predictors of caregiver quality of life, anxiety, depression and burden during the first year. Design A 12‐month longitudinal study. Data were collected between June 2013–May 2016. Methods Changes in stroke caregiver quality of life, anxiety and depression and burden and their predictors were identified using linear mixed‐effects models. Results The caregivers (N = 244) were 53 years old and mostly female. Caregiver quality of life did not change significantly over the 12 months, anxiety and depression decreased up to 9 months and caregiver burden decreased from baseline to 3 months, then increased up to 9 months. Higher caregiver quality of life was predicted by caregiver younger age, higher education, living with a stroke survivor, survivor older age and higher physical functioning; higher anxiety and depression were predicted by older caregiver age and younger survivor age; higher burden was predicted by caregiver male gender, the caregiver not living with survivor and survivor lower physical functioning. Conclusion The first 9 months of caregiving are particularly problematic for caregivers. The trajectories of the above variables and their predictors may be useful for policy makers, clinicians, investigators and educators to give better care to stroke caregivers and their survivors.
Background Parkinson’s disease progressively limits patients at different levels and as a result family members play a key role in their care. However, studies show lack of an integrative approach in Primary Care to respond to the difficulties and psychosocial changes experienced by them. The aim of this study is to evaluate the effects of a multidisciplinary psychoeducational intervention focusing on improving coping skills, the psychosocial adjustment to Parkinson’s disease and the quality of life in patients and family carers in a Primary Care setting. Methods This quasi-experimental study with control group and mixed methods was designed to evaluate a multidisciplinary psychoeducational intervention. Based on the study power calculations, 100 people with Parkinson’s disease and 100 family carers will be recruited and assigned to two groups. The intervention group will receive the ReNACE psychoeducational intervention. The control group will be given a general educational programme. The study will be carried out in six community-based health centres. The results obtained from the two groups will be collected for evaluation at three time points: at baseline, immediately after the intervention and at 6 months post-intervention. The results will be measured with these instruments: the Quality of Life Scale PDQ-39 for patients and the Scale of Quality of Life of Care-givers SQLC for family carers, and for all participants the Psychosocial Adjustment to Illness scale and the Brief COPE Inventory. Focus groups will be organised with some patients and family carers who will have received the ReNACE psychoeducational intervention and also with the healthcare professionals involved in its development. Discussion An important gap exists in the knowledge and application of interventions with a psychosocial approach for people with PD and family carers as a whole. This study will promote this comprehensive approach in Primary Care, which will clearly contribute in the existing knowledge and could reduce the burden of PD for patients and family carers, and also in other long-term conditions. Trial registration NCT03129425 (ClinicalTrials.gov). Retrospectively registered on April 26, 2017.
Aims: To identify affected family members' (AFMs) experiences of barriers and facilitators to informal and formal help-seeking for themselves and on behalf of a close relative with alcohol and other drug (AOD) misuse. Methods: Qualitative study, informed by interpretative phenomenological analysis. Semi-structured, audio-recorded, telephone interviews were used to collect data from 31 AFMs. Results: AFMs experienced several overlapping and at times competing help-seeking obstacles and enablers in accessing informal and formal support for themselves and on behalf of their relative with AOD misuse, and these are reflected in two themes and associated sub-themes: barriers to help-seeking and facilitators to help-seeking. Five help-seeking barriers were abstracted from the data: Stigma discourages help-seeking, Difficulty locating informal and formal support services, Previous negative AOD service help-seeking experiences deter subsequent help-seeking, Hopelessness inhibits help-seeking, and Feeling undervalued as an AFM. Three help-seeking facilitators were abstracted from the data: Previous positive help-seeking experiences increase future help-seeking, Overcoming shame and isolation and being open with trusted significant others, and Persevering in help-seeking. Conclusions: AFMs who access informal and formal help sources for themselves, and on behalf of their relative, are more likely to sustain their important support-giving role. Measures to strengthen AFMs' capacity and willingness to support their relative should be founded on an understanding of factors that affect their own help-seeking in addition to those encountered when help-seeking on behalf of their relative. Our findings have implications for the visibility of AOD services and informal support groups on the Internet, organisational culture of some AOD services, valuing the contributions of AFMs, and protecting AFMs and their relatives' privacy. Our findings also have implications for reducing public stigma of AOD misuse, changing some AFMs' scepticism about treatment outcomes, and reinforcing and enhancing AFMs' skills in persevering with help-seeking.
Aims: To identify affected family members' (AFMs) experiences of barriers and facilitators to informal and formal help-seeking for themselves and on behalf of a close relative with alcohol and other drug (AOD) misuse. Methods: Qualitative study, informed by interpretative phenomenological analysis. Semi-structured, audio-recorded, telephone interviews were used to collect data from 31 AFMs. Results: AFMs experienced several overlapping and at times competing help-seeking obstacles and enablers in accessing informal and formal support for themselves and on behalf of their relative with AOD misuse, and these are reflected in two themes and associated sub-themes: barriers to help-seeking and facilitators to help-seeking. Five help-seeking barriers were abstracted from the data: Stigma discourages help-seeking, Difficulty locating informal and formal support services, Previous negative AOD service help-seeking experiences deter subsequent help-seeking, Hopelessness inhibits help-seeking, and Feeling undervalued as an AFM. Three help-seeking facilitators were abstracted from the data: Previous positive help-seeking experiences increase future help-seeking, Overcoming shame and isolation and being open with trusted significant others, and Persevering in help-seeking. Conclusions: AFMs who access informal and formal help sources for themselves, and on behalf of their relative, are more likely to sustain their important support-giving role. Measures to strengthen AFMs' capacity and willingness to support their relative should be founded on an understanding of factors that affect their own help-seeking in addition to those encountered when help-seeking on behalf of their relative. Our findings have implications for the visibility of AOD services and informal support groups on the Internet, organisational culture of some AOD services, valuing the contributions of AFMs, and protecting AFMs and their relatives' privacy. Our findings also have implications for reducing public stigma of AOD misuse, changing some AFMs' scepticism about treatment outcomes, and reinforcing and enhancing AFMs' skills in persevering with help-seeking.
Background While it is known that informal caregiving is associated with care‐derived self‐esteem cross‐sectionally, little is known about the impact of informal caregiving on general self‐esteem longitudinally. Thus, we aimed at examining whether informal caregiving affects general self‐esteem using a longitudinal approach. Methods Data were gathered from a population‐based sample of community‐dwelling individuals aged 40 and over in Germany from 2002 to 2014 (n = 21 271). General self‐esteem was quantified using the Rosenberg scale. Individuals were asked whether they provide informal care regularly. Results Fixed effects regressions showed no significant effect of informal caregiving on general self‐esteem longitudinally. General self‐esteem decreased with increasing morbidity, increasing age, decreasing social ties, whereas it was not associated with changes in employment status, marital status and body mass index. Additional models showed that decreases in self‐esteem were associated with decreases in functional health and increases in depressive symptoms. Conclusion Our longitudinal study emphasises that the occurrence of informal caregiving did not affect general self‐esteem longitudinally. Further research is needed in other cultural settings using panel data methods.
Objectives: Although dementia typically occurs in older people, it can also emerge in people aged younger than 65 years in the form of young‐onset dementia, the most common type of which is Alzheimer's disease (AD). However, few studies have examined the needs of persons with young‐onset AD (YO‐AD) and their families, and cross‐cultural research on the topic is even scarcer. In response, we investigated the situations, experiences and needs for assistance of carers of persons with YO‐AD in Brazil and Norway. Methods: As part of our qualitative study, we formed a convenience sample of Brazilian (n = 9; 7 women) and Norwegian carers (n = 11; 6 women) in 2014 and 2015, respectively, and analysed data in light of a modified version of grounded theory. Results: Carers' narratives from both countries revealed five common themes in terms of how YO‐AD affected carers' psychological and emotional well‐being, physical well‐being, professional and financial well‐being, social lives and need for support services. Conclusions: The infrequent differences between carers of persons with YO‐AD in Brazil and Norway indicate that carers' problems are highly similar regardless of cultural differences and public services provided.
Purpose :The aim of the article is to explore the chronic sorrow experiences of the caregivers of clients with schizophrenia in Taiwan. Design and Methods: Descriptive, phenomenological, and purposive sampling and one‐to‐one, in‐depth, and unstructured interviews were used. Data saturation was achieved after interviewing 12 participants. Narratives were analyzed using Colaizzi's (1978) method. Findings: Three themes and eight subthemes emerged, including encountering sorrow (disordered life, disintegrated self‐esteem, little prospect for hope, and collapsed sense of security), talking with sorrow (cognitive change and transformation of action), and living with sorrow (living with defects and living with responsibilities). Practice Implications: Advanced practice psychiatric nurses should take the emotional stability of caregivers into consideration. Caregivers should be encouraged and taught effective culture‐oriented strategies for living with sorrow.
The purpose of this article is to generate meaningful understanding of the mental health informal carers’ experience and to identify a possible approach to social work intervention. A mixed method of quantitative and qualitative analysis was used for data collection. The findings reveal that most of the informal carers are female adult. They experience stress, domestic violence, social exclusion as a result of the caring role, and fear of stigma. Cultural and religious factors must be considered when translating the caring role. The findings suggest implications for social work practice at a community level, utilizing a familial and support-group approach, with a practice that is sensitive to gender and religion.
Rationale: Given the high number of young adults caring for a family member, and the potential for adverse psychosocial outcomes, there is a need for a screening tool, with clinical utility, to identify those most vulnerable to poor outcomes and to aid targeted interventions. Objectives: (i) To determine whether current knowledge from cancer literature regarding young carers is generalisable to chronic conditions and, therefore, whether an existing screening tool could be adapted for this population. (ii) To develop a measure of unmet needs in this population and conduct initial psychometric analysis. Design: This was mixed method interviews in study one informed measure development in study two. Inclusion criteria were as follows: having a parent with a chronic condition and being aged 16-24 years. In study 1, an interpretative phenomenological analysis was conducted on interviews from seven young adults (age range 17-19 years). Study 2 explored factor structure, reliability and validity of the Offspring Chronic Illness Needs Inventory (OCINI). Participants were 73 females and 34 males (mean ages 18.22, SD = 1.16 18.65, SD = 1.25). Main outcome measures OCINI, Depression Anxiety and Stress Scale, and the Adult Carers Quality of Life Scale. Results: Interviews communicated that the impact of their parent's condition went unacknowledged and resulted in psychosocial, support and informational needs. An exploratory principal axis analysis of the OCINI yielded five factors. Significant and positive correlations were found between unmet needs and stress, anxiety, and depression, and inversely with quality of life. Conclusions: The scale has applications in clinical settings where these young people, who are at risk of negative psychological outcomes, may be assessed and unmet needs targeted appropriately. References
Background The impairments that affect survivors of TBI impact the person’s independence, and family members frequently have to take on a caregiver role. This study examined the experience of caregiving for individuals with TBI in Botswana and its impact on psychological distress in caregivers. Methods Using a mixed methods study design, qualitative data from semi-structured interviews were thematically analyzed and triangulated with data regarding functional status from the Structured Head Injury Outcome Questionnaire and the Hospital Anxiety and Depression Scale (HADS). Results The study included 26 participants with moderate to severe TBI, and a total of 18 caregivers were recruited. Caregivers commonly reported receiving limited information regarding their relatives’ injuries and management methods. Heavy caregiving demands were placed on them, with little support from the healthcare system. A significant proportion of caregivers experienced anxiety and depression, which was associated with lower functional independence in their injured relative. Somewhat more spouses than parents reported clinically significant anxiety levels. Other consequences of caregiving included social isolation and limited support from the wider community as well as financial difficulties. Despite these stresses caregivers tended to accept their caregiving role. Cultural factors such devotion to their families and faith and belief in God moderated burden and distress. Conclusions Carers of individuals with TBI in Botswana face significant challenges. Rehabilitation efforts need to take these into account. Specifically, more information and support needs to be provided to survivors and their families. Psychological, economic and health needs of the care providers also should be addressed in the planning of rehabilitation interventions.
Implications for Rehabilitation
Older adults cared for at home by family members at the end of life are at risk for care transitions to residential and institutional care settings. These transitions are emotionally distressing and fraught with suffering for both families and the older adult. A theoretical model titled "The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life" was developed using the method of grounded theory. When a dying parent cannot remain at home to die, family members experience guilt throughout the transition process. Findings indicated that guilt surrounding transfers escalated during the initial stages of the transfer but was mitigated by achieving what family members deemed as a "good" death when relatives were receiving hospice care. The findings of this interpretative approach provide new insights into family-focused perspectives in care transfers of the dying.
Purpose: This study aimed to determine how carer distress and psychological morbidity change over time following a patient’s diagnosis of high-grade glioma (HGG) and identify factors associated with changes in carers’ psychological status. Methods: Carers of patients with HGG planned for chemoradiotherapy were recruited to this longitudinal cohort study. Carers completed questionnaires during patients’ chemoradiotherapy and 3 and 6 months later including the following: the Distress Thermometer (DT); General Health Questionnaire-12 (GHQ-12); and three single-item questions about understanding of information presented by health professionals, confidence to care and preparedness to care for their relative/friend. Linear latent growth models were applied. Results: The time 1 questionnaire was completed by 118 carers, of these 70 carers provided responses to the third time point. Carer distress and psychological morbidity were most prominent proximal to diagnosis, but remained high over time. Sixty-two percent of participants had moderate or high distress on the DT at time 1, 61% at time 2 and 58% at time 3. Scores on the DT and the GHQ-12 correlated significantly at all time points as did changes in scores over time (p < .001). However, for individual carers, the DT or GHQ-12 scores at one time point did not strongly predict scores at subsequent time points. Conclusion: In carers of patients with HGG, distress levels are consistently high and cannot be predicted at any time point. Carers should be monitored over time to identify evolving psychological morbidity. The single-item DT correlates highly with GHQ-12 scores and is a suitable tool for rapid repeated screening.
Background Family carers provide substantial support for patients at end-of-life. It is important to understand how caregiving impacts on carers to guide appropriate interventions to improve carer wellbeing. The aims of this study were to investigate levels of psychological distress and predictors of distress during end of life care giving in a national sample of family carers of people with cancer. Methods Four-month post-bereavement postal survey of a national census sample of relatives reporting a death from cancer 1–16th May 2015. Retrospective data collected included carer demographics, carers’ psychological distress (GHQ-12), care giving hours and tasks, out of pocket expenses, support from informal and formal care, other demands on carers’ time (work, other caregiving responsibilities, voluntary work), opportunities for respite, patient symptoms and activities of daily living (ADL). Exploratory univariate analyses were used to describe the data and inform multivariate analysis. Results Surveys were completed by 1504 (28.5%) of 5271 carers. Carers’ median GHQ distress score was 7 (IQR 4–9), where a score>=4 indicates ‘caseness’ for psychological distress. Univariate analysis results at p<0.05 indicate that increased hours of caregiving, other caring responsibilities and the patient‘s worsening symptoms and reduced ADL increased distress. Formal support, hours of volunteering and respite were associated with reduced distress. Carer age, sex, work situation and level of deprivation also related to distress. Multivariate analysis indicates that the total hours of care giving, patients’ psychological symptoms and the carer being female was related to increased distress, whilst formal service provision was related to reduced distress. The final model explained 19% of variance in distress. Conclusion A considerable majority of family carers suffer clinically significant levels of psychological distress during end of life care giving. Objective care burden in the form of total hours of caregiving is associated with increased distress. Being female and caring for a patient with psychological symptoms appears to increase distress, whereas support from formal care services can ameliorate distress. Whilst the final model explains a modest amount of variance in carer distress, it indicates that reduction in objective care burden and support from services can have an important, positive impact.
Background: Dementia is one of the most challenging age-related illnesses for family caregivers, whose care-related burden is well known. Research indicates that day care centres (DCCs) can reduce the caregiver burden and help family caregivers to cope with demands; however, the current body of knowledge is still tentative and inconsistent, and more research is recommended. The aim of this study is to provide an extended understanding of the situation of family caregivers and to examine to what extent DCCs can meet their need for support and respite. Methods: This study has a qualitative descriptive design using in-depth interviews with 17 family caregivers of people with dementia attending DCCs. The data analysis was undertaken using systematic text condensation. Results: Caregivers experience a complex role, with added responsibilities, new tasks, and emotional and relational challenges that are expressed through distressing emotions and demands for interaction. Additionally, the caregiving role leads to positive experiences, such as acceptance and adaptation, support and help, and positive changes in the relationship. Day care relieves family caregivers by meeting the person with dementia’s needs for social community, nutrition, physical activity, and structure and variety in everyday life. Using a DCC led to a higher quality of time spent together and easier cooperation, but it also produced some hard feelings and challenging situations. DCCs gave the caregivers a feeling of freedom and increased the time available to be spent on their own needs, to be social and to work or do practical tasks undisturbed. Conclusions: DCCs for people with dementia can give family caregivers support and relief and have a positive impact on the relationship between the family caregiver and the person with dementia. A more individualized program, in addition to flexible opening hours, would make DCCs even more effective as a respite service, positively influencing the family caregiver’s motivation and ability to care and postponing the need for nursing home placement.
Psychoeducational interventions for family carers of people with psychosis are effective for improving compliance and preventing relapse. Whether carers benefit from these interventions has been little explored. This systematic review investigated the effectiveness of psychoeducation for improving carers' outcomes, and potential treatment moderators. We searched for randomised controlled trials (RCTs) published in English or Chinese in eight databases. Carers' outcomes included wellbeing, quality of life, global morbidities, burden, and expressed emotion. Thirty-two RCTs were included, examining 2858 carers. Intervention duration ranged from 4 to 52weeks, and contact times ranged from 6 to 42hours. At post intervention, findings were equivocal for carers' wellbeing (SMD 0.103, 95% CI −0.186 to 0.392). Conversely, psychoeducation was superior in reducing carers' global morbidities (SMD −0.230, 95% CI −0.386 to −0.075), perceived burden (SMD −0.434, 95% CI −0.567 to −0.31), negative caregiving experiences (SMD −0.210, 95% CI −0.396 to −0.025) and expressed emotion (SMD −0.161, 95% CI −0.367 to −0.045). The lack of available data precluded meta-analysis of outcomes beyond short-term follow-up. Meta-regression revealed no significant associations between intervention modality, duration, or contact time and outcomes. Further research should focus on improving carers' outcomes in the longer-term and identifying factors to optimise intervention design.
Background: Anxiety and depression are common among patients with acute illness and their families. In oncology, psychosocial services addressing these symptoms are increasingly part of regular practice. Less is known about psychiatric distress among patients with acute neurological injury (ANI) and their family caregivers. To highlight this inequity in psychosocial intervention across medical services, we compared anxiety and depressive symptomatology shortly following diagnosis among patients facing incurable cancer or ANI and their family caregivers. Methods: Recruited from the same hospital, participants were patients within 8 weeks of receiving a diagnosis of incurable cancer (N = 350) and their family caregivers (N = 275; total patient/caregiver dyads = 275) and patients hospitalized in the Neuroscience ICU in the past 2 weeks (N = 81) and their family caregivers (N = 95; total dyads = 75). Participants reported anxiety and depressive symptoms using the Hospital Anxiety and Depression Scale. Symptomatology was compared across illnesses using independent samples t-tests and multiple regressions controlling for differences in sample demographics. Results: Patients with ANI (M = 6.90) reported greater anxiety symptoms than those with cancer (M = 5.31, p < .001), while caregivers for patients with ANI (M = 5.45) reported greater depressive symptoms than caregivers for patients with cancer (M = 3.81, p < .001). Results remained when controlling for demographic differences between samples. Conclusion: This is the first cross-comparison of psychiatric distress in patients and family caregivers affected by two distinct, life-threatening illnesses early in the illness trajectory. Findings support the priority of addressing psychiatric distress among patients with ANI and their family caregivers, as has been emphasized in the psychosocial oncology field.
Objectives: This study hypothesized that higher caregiving demands are related to higher perceived injustice. Furthermore, this study investigated the mediating role of perceived injustice in the link between caregiving demands and caregivers’ psychological well-being. Design: A cross-sectional design. Setting: The Pain Centre of the university medical centre. Subjects: Participants were 184 family caregivers of patients with chronic musculoskeletal pain. Main measures: Participants completed questionnaires that assessed caregiving demands (i.e. The Dutch Objective Burden Inventory), perceived injustice (i.e. The Injustice Experience Questionnaire), how much they considered different sources responsible for the injustice they experienced (i.e. A newly developed inventory), perceived burden (i.e. The Zarit Burden Interview), distress (i.e. The Depression, Anxiety, and Stress Scale), and anger (i.e. The Hostility subscale of the Symptom Checklist-90-Revised). Results: The findings showed that caregiving demands are significantly related to perceived injustice in family caregivers (r = .44; P < .001). Only a small group of family caregivers considered the patient or themselves responsible, but more than half of the caregivers considered healthcare providers at least somewhat responsible for the unjust situation. Finally, perceived injustice mediated the association between caregiving demands and burden (b = .11, CI: .04-.23) and distress (b = .05, CI: .006-.12), but not anger (b = .008, CI: -.01-.06). Conclusion: The findings suggest that perceived injustice plays an important role in the well-being of family caregivers and caregivers’ well-being may be improved by changing their perceptions about their caregiving tasks and their condition.
Background: Despite its popularity, the latent structure of 22-item Zarit Burden Interview (ZBI) remains unclear. There has been no study exploring how caregiver multidimensional burden changed. Objective: The aim of the work was to validate the latent structure of ZBI and to investigate how multidimensional burden evolves with increasing global burden. Methods: We studied 1,132 dyads of dementia patients and their informal caregivers. The caregivers completed the ZBI and a questionnaire regarding caregiving. The total sample was randomly split into two equal subsamples. Exploratory factor analysis (EFA) was performed in the first subsample. In the second subsample, confirmatory factor analysis (CFA) was conducted to validate models generated from EFA. The mean of weighted factor score was calculated to assess the change of dimension burden against the increasing ZBI total score. Results: The result of EFA and CFA supported that a five-factor structure, including role strain, personal strain, incompetency, dependency, and guilt, had the best goodness-of-fit. The trajectories of multidimensional burden suggested that three different dimensions (guilt, role strain and personal strain) became the main subtype of burden in sequence as the ZBI total score increased from mild to moderate. Factor dependency contributed prominently to the total burden in severe stage. Conclusion: The five-factor ZBI is a psychometrically robust measure for assessing multidimensional burden in Chinese caregivers. The changes of multidimensional burden have deepened our understanding of the psychological characteristics of caregiving beyond a single total score and may be useful for developing interventions to reduce caregiver burden.
Due to an expected increase of people in need of care, sound knowledge about health effects of informal care provision is becoming more and more important. Theoretically, there might be positive as well as negative health effects due to caregiving to relatives. Moreover, we suppose that such health effects differ by national context – since care is differently organized in Europe – and depend on the social setting in which the care relationship takes place. Using data from the Survey of Health, Ageing and Retirement (SHARE, waves 1, 2, 3, and 5) and from the English Longitudinal Study of Ageing (ELSA, waves 2–5) we examined the connection between informal caregiving and self-perceived as well as mental health in a country comparative perspective. Taking advantage of the longitudinal structure of the data, pooled ordinary least squares (OLS) and fixed-effects models (FEM) were estimated. Our results show distinct differences in the relationship between reported health and the provision of informal care depending on whether individuals give care to someone inside or outside the household. Caregivers inside the household reported worse health, caregivers from outside the household reported better health than non-caregivers. We find that this correlation is largely due to selection into caregiving: people in worse health took up care inside while people in better health took up care outside the household. However, in most countries people who started caregiving inside the household experienced a decline in their mental health. This suggests that caregiving inside the household results in psychological stress irrespective of the type of welfare state. The results regarding self-perceived health and caregiving outside the household are less distinct. All in all our results show that health consequences of caregiving vary not only between different welfare regimes but also between countries of similar welfare state types.
Objectives : Although a sizable body of research supports negative psychological consequences of caregiving, less is known about potential psychological benefits. This study aimed to examine whether caregiving was associated with enhanced generativity, or feeling like one makes important contributions to others. An additional aim was to examine the buffering potential of perceived generativity on adverse health outcomes associated with caregiving. Methods : Analyses utilized a subsample of participants (n = 3,815, ages 30–84 years) from the second wave of the National Survey of Midlife Development in the United States (MIDUS). Results : Regression analyses adjusting for sociodemographic factors indicated greater negative affect and depression (p .001) and lower levels of positive affect (p <.01), but higher self-perceptions of generativity (p < .001), in caregivers compared with non-caregivers. This association remained after adjusting for varying caregiving intensities and negative psychological outcomes. Additionally, generativity interacted with depression and negative affect (p values < .05) to lessen the likelihood of health-related cutbacks in work/household productivity among caregivers. Conclusions : Results suggest that greater feelings of generativity may be a positive aspect of caregiving that might help mitigate some of the adverse health and well-being consequences of care. Clinical Implications : Self-perceptions of generativity may help alleviate caregiver burden and explain why some caregivers fare better than others.
Objective: To systematically review the effect of psychosocial interventions on improving QoL, depression and anxiety of cancer caregivers. Methods: We conducted a systematic review of psychosocial interventions among adult cancer caregivers published from 2011 to 2016. PsycINFO, PubMed, Proquest, Cochrane Library, Embase, Applied Social Sciences Index and Abstracts (ASSIA), Cumulative Index to Nursing and Allied Health Literature, Social Sciences Citation Index (SSCI) and EBSCO, China National Knowledge Infrastructure (CNKI) and WANFANG were searched. Inclusion criteria were: randomized controlled trails (RCTs); psychosocial intervention to cancer caregivers; psychosocial health indicators including quality of life, depression or anxiety. Results: 21 studies out of 4,666 identified abstracts met inclusion criteria, including 19 RCTs. The intervention modes fell into the following nine categories: family connect intervention, self-determination theory-based intervention (SDT), cognitive behavioral therapy (CBT), emotion-focused therapy (EFT), comprehensive health enhancement support system (CHESS), FOCUS programme, existential behavioral therapy (EBT), telephone interpersonal counseling (TIP-C), problem-solving intervention (COPE). Conclusion: paired-intervention targeting self-care and interpersonal connections of caregivers and symptom management of patients is effective in improving quality of life and alleviating depression of cancer caregivers while music therapy is helpful for reducing anxiety of cancer caregivers.
Objective: Stroke does not only affect the physical state of patients but also the emotional state of their relatives, most effectively their caregivers. The study aims to examine the mood of caregivers experienced with care for patients with stroke who are highly dependent on the assistance and also to establish the relationship between the emotional state of caregivers and the severity of disability of the patients.
Methods: This study contained a total of 76 patients with sufficient cognitive functions and severe physical disabilities with hemiplegia caused by a cerebrovascular accident and their caregivers and 94 controls. The functional state of patients was assessed by the Barthel Index (BI). Furthermore, emotional state of the caregivers was assessed by the Hospital Anxiety and Depression Scale (HADS) and their life quality was assessed by the SF36 Health Survey.
Results: The mean anxiety (9.73 ± 4.88) and depression rates (9.81 ± 5.05) in the caregivers were significantly higher than those in controls (p<0.001, respectively). Significant impairments were observed in both their mental and physical health. Regression analysis also showed a significant negative correlation between the BI scores and the HADS scores.
Conclusion: Caregivers had an impaired emotional state and the level of their anxiety was associated with the severity of functional disability of the patients. Therefore, the support provided to the caregiver might be influential on the functional recovery of the patients.
Care work is often feminised and invisible. Intangible components of care, such as emotional labour, are rarely recognised as economically valuable. Men engaging in care work can be stigmatised or simply made invisible for non-conformance to gender norms (Dworzanowski-Venter, 2008). Mburu et al (2014) and Chikovore et al (2016) have studied masculinity from an intersectional perspective, but male caregiving has not enjoyed sufficient intersectional focus. Intersectional analysis of male caregiving has the twin benefits of making 'women's work' visible and finding ways to keep men involved in caring occupations. I foreground the class-gender intersection in this study of black male caregivers as emotional labourers involved in palliative care work in Gauteng (2005-2013). Informal AIDS care and specialist oncology nursing are contrasting cases of male care work presented in this article. Findings suggest that caregiving men interviewed for this study act in gender-disruptive ways and face a stigmatising social backlash in post-colonial South Africa. Oncology nursing has a professional cachet denied to informal sector caregivers. This professional status acts as a class-based insulator against oppressive gender-based stigma, for oncology nursing more closely aligns to an idealised masculinity. The closer to a 'respectable' middle-class identity, or bourgeois civility, the better for these men, who idealise traditionally white male formal sector occupations. However, this insulating effect relies on a denial of emotional aspects of care by male cancer nurses and a lack of activism around breaking down gendered notions of care work. Forming a guild of informal sector AIDs caregivers could add much-needed professional recognition and provide an organisational base for gender norm disruption through activism. This may help to retain more men in informal sector caregiving roles and challenge the norms that are used to stigmatise male caregiving work in general.
Caregivers of people with dementia (PwD) face burden, feelings of loneliness, and social isolation. Previous studies have shown promising effects of online e-health interventions. Using social media may facilitate support for dementia caregiver networks. In an iterative step-wise approach, a social support tool entitled "Inlife" was developed. This paper describes the design of a study evaluating the effects of Inlife and its process characteristics. Methods: A mixed-method, randomised controlled trial with 122 caregivers of PwD will be conducted. Participants will be assigned to either the Inlife social support intervention or a waiting-list control group. After 16 weeks, the control group will obtain access to the Inlife environment. Data will be collected at baseline (T0) and at 8-week (T1), 16-week (T2) and 42-week follow up (T3). The 16-week follow-up assessment (T2) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. The primary outcomes include feelings of caregiver competence and perceived social support. The secondary outcomes include received support, feelings of loneliness, psychological complaints (e.g., anxiety, stress), and quality of life. A process evaluation, including semi-structured interviews, will be conducted to examine the internal and external validity of the intervention. Discussion: Using a mixed-method design, our study will provide valuable insights into the usability, effectiveness, and factors related to implementation of the Inlife intervention. Our study results will indicate whether Inlife could be a valuable social support resource in future routine dementia care. Trial registration: Dutch trial register, NTR6131. Registered on 20 October 2016.
Objective: Every year, millions of Americans become informal caregivers to loved ones admitted to Neuroscience Intensive Care Units (Neuro-ICU), and face challenges to Quality of Life (QoL). This study sought to identify associations between resiliency, distress, and caregiver QoL at time of Neuro-ICU admission.; Methods: Informal caregivers (N = 79, Mage = 53, 64% female) of Neuro-ICU patients were recruited and completed self-report questionnaires during the hospitalization. We used hierarchical regression to test relative contributions of caregiver mindfulness, perceived coping abilities, and preparedness for caregiving to caregiver QoL, above-and-beyond non-modifiable patient and caregiver factors (e.g., gender) and caregiver psychological distress (i.e., anxiety, depression, history of mental health conditions).; Results: Preparedness for caregiving was uniquely and positively associated with Physical Health QoL (sr2 = 0.07, p = 0.001), Social QoL (sr2 = 0.05, p = 0.021), and Environmental QoL (sr2 = 0.14, p < 0.001), even after accounting for psychological distress. Mindfulness was uniquely and positively associated with Physical Health QoL (sr2 = 0.12, p < 0.001) and Psychological QoL (sr2 = 0.07, p = 0.004), above-and-beyond variance accounted for by psychological distress.; Conclusions: Mindfulness and preparedness for caregiving emerged as consistent, unique resiliency factors associated with greater caregiver QoL across QoL dimensions. Results highlight the importance of resiliency factors in QoL among Neuro-ICU caregivers and the need for early interventions to support resiliency.
Objectives: Health and social care services are increasingly reliant on informal caregivers to provide long-term support to stroke survivors. However, caregiving is associated with elevated levels of depression and anxiety in the caregiver that may also negatively impact stroke survivor recovery. This qualitative study aims to understand the specific difficulties experienced by caregivers experiencing elevated symptoms of anxiety and depression.; Methods: Nineteen semi-structured interviews were conducted with caregivers experiencing elevated levels of depression and anxiety, with a thematic analysis approach adopted for analysis.; Results: Analysis revealed three main themes: Difficulties adapting to the caring role; Uncertainty; and Lack of support.; Conclusions: Caregivers experienced significant difficulties adapting to changes and losses associated with becoming a caregiver, such as giving up roles and goals of importance and value. Such difficulties persisted into the long-term and were coupled with feelings of hopelessness and worry. Difficulties were further exacerbated by social isolation, lack of information and poor long-term health and social care support.; Clinical Implications: A greater understanding of difficulties experienced by depressed and anxious caregivers may inform the development of psychological support targeting difficulties unique to the caring role. Improving caregiver mental health may also result in health benefits for stroke survivors themselves.
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.
This prospective study investigates informal care networks and their impact on hospice outcomes. Primary caregivers (N = 47) were the main source of data from 2 time points: within a week of enrollment in hospice and bereavement. Data were also collected from 42 secondary caregivers. Intraclass correlation coefficients (ICCs) determined correspondence between primary and secondary caregivers regarding informal care network size. Correlations were used to test associations between variables. Nonparametric paired sample tests were used to analyze change in anger and guilt. The ICC found poor correspondence (-0.13) between primary and secondary caregivers' network descriptions. Correlational analyses found a strong/moderate negative association between quality of dying (QOD) and grief ( r = -0.605, P < .05). Study participants reported increased anger (0.4, P < .05, range 1-5) and guilt (0.4, P < .05, range 1-5), particularly among caregivers with high levels of support. Findings suggest that improving QOD may facilitate postdeath coping for caregivers.
Background: Population aging places greater demands on the supply of informal carers. The aims of this study were to examine (1) the types of unmet support needs of carers of older Australians and (2) the association of unmet needs with mental health.; Methods: Utilizing new data from the 2015 Australian Bureau of Statistics (ABS) Survey of Disability, Ageing and Carers, we calculated the prevalence of carers experiencing specific and multiple unmet needs for support, using single and multiple item measures. Logistic regression models were fitted to examine the association between unmet needs and psychological distress (using the Kessler psychological distress scale), once demographic and health factors were controlled for.; Results: In 2015, 35% of carers of older Australians cited at least one unmet need for support. Among this group, almost two-thirds cited multiple unmet support needs (64.7%). The most prevalent types of unmet needs included financial (18%), physical (13%), and emotional support (12%), as well as additional respite care and support to improve carer health (12%). After controlling for demographic and health characteristics of the carer, having any unmet need for support increased the odds of psychological distress by twofold (OR = 2.20, 95% CI = 1.65, 2.94). With each successive unmet need for support, the odds of psychological distress increased 1.37 times (OR = 1.36, 95% CI = 1.22, 1.54). Those who had received assistance with care, but required further support were 1.95 times more likely (OR = 1.95, 95% CI = 1.17, 3.24) to be in distress and those who had not received care assistance were about 2.4 times more likely (OR = 2.38 95% OR = 1.56, 3.62) to be in distress relative to those with no unmet need.; Conclusions: Addressing unmet support needs of carers is important, not only for the planning of services for carers in an aging population, but also because of the association between unmet support needs and carers mental health.
Background: Caregivers of people with dementia are likely to have psychological distress that sometimes results in mental health problems, such as depression. The objective of this study was to examine some predictive factors that are thought to be associated with psychological distress of caregivers of people with dementia in Japan.; Methods: Design: A cross-sectional study.; Sample: As part of a study to estimate the cost of dementia in Japan, 1,437 people with dementia-caregiver dyads were enrolled in the current informal care time study. The measurements in the study included were the basic characteristics of the caregivers and the people with dementia, and the informal care time during a week.; Analysis: Factors that predict caregivers' psychological distress, which was measured by Kessler's Psychological Distress scale (K6) score, were evaluated using univariate and multivariate regression analyses.; Results: Approximately 69% of the caregivers recorded a K6 score higher than 4, while 18% scored higher than 12. According to the results of the logistic regression analysis (cut-off 4/5), the K6 score was associated with mental and comorbid diseases of people with dementia, informal care time, its lower number of caregivers, and the level of nursing care. According to the results of logistic regression analysis (cut-off 12/13), the K6 score was associated with mental symptoms and comorbid disease of people with dementia, sex of caregivers, informal care time, and its lower number of caregivers.; Conclusion: Our findings indicated that the psychological distress of the caregivers is quite high and that informal care time and behavioral and psychological symptoms of dementia are associated with it. These results corroborate with previous findings.
Purpose: This qualitative study explored how stroke survivors' spouses described their own self-management, their partner's self-management post-stroke and how they had been supported in developing self-management.; Method: Focus group interviews were conducted with 33 spouses of stroke survivors 34-79 years of age. A constant comparative framework was used for the analysis.; Result: Stroke also affected the spouses, gave changes in their relationships and challenged in being a caregiver beside being partner. They felt burdened, lonely, sad, and guilty. To manage themselves, many participants created time for themselves. For most spouses, self-management was connoted with co-management because they perceived their partners were not able to manage themselves completely post-stroke. They often felt lost after their partners came home and reported that they learned how to coach their partners post-stroke by trial and error, without much professional support. Moreover, many spouses experienced informal peer support as helpful.; Conclusion: Spouses of stroke survivors should be involved as soon as possible in stroke-rehabilitation and continue at home post-discharge. In addition to enhancing the spouses' skills in caregiving and supporting self-management, stroke survivors' spouses also need support in their own emotional and role management. Moreover, peers can play a role in rehabilitation post-stroke. Implications for Rehabilitation Spouses of stroke survivors should be considered as full participants of stroke-self-management programs to enhance their skills in caregiving and supporting self-management. Stroke survivors' spouses need support in their own emotional and role management. Peer support can play a role in rehabilitation post-stroke for stroke survivors as well as their spouses.
Objectives: To identify the distinct quality of life (QOL) trajectories among stroke survivors, and to evaluate the associations with their caregivers' burden, anxiety, and depression.; Design: This was a longitudinal dyadic study.; Settings: Stroke survivors and their informal caregivers were enrolled upon discharge from several rehabilitation hospitals, and they were followed during this multisite longitudinal study.; Participants: The stroke survivors (N=405, mean age=70.7y) included older adult men (52.0%), most of whom (80.9%) had had ischemic strokes. The caregivers (n=244, mean age=52.7y) included mostly women (65.2%), most of whom were the survivors' children (50.0%) or spouses (36.1%).; Interventions: Not applicable.; Main Outcome Measures: Latent growth mixture modeling was used to identify the distinct QOL trajectories among the stroke survivors over the course of 12 months of recovery. The longitudinal associations between the stroke survivor QOL trajectories and the caregivers' burden, anxiety, and depression were evaluated. A multinomial regression was then used to identify the predictors of the various survivor QOL trajectories.; Results: Three distinct survivor QOL trajectories were identified: high and slightly improving QOL, moderate and slightly worsening QOL, and markedly improving QOL. The caregivers' burden, anxiety, and depression mirrored the survivors' QOL trajectories. In the multinomial models, an older survivor age, hemorrhagic stroke, lower education, and coexisting chronic obstructive pulmonary disease or thyroid disease were significantly associated with a moderate and slightly worsening QOL trajectory. Women and blindness were associated with a markedly improving QOL survivor trajectory.; Conclusions: A survivor's QOL trajectory after a stroke was associated with their caregiver's burden, anxiety, and depression. Those survivors belonging to the moderate and slightly worsening QOL trajectory and their caregivers, in particular, need special care, because they are at risk for the worst outcomes.
Background: Despite being a common event in the course of an advanced cancer illness, there is little understanding of patients' perceptions of hospital Emergency Department presentations.; Aim: To explore the experiences and perceptions of Emergency Departments held by patients with advanced cancer and their informal caregivers.; Design: Cross-sectional study involving semi-structured interviews with advanced cancer patients and their informal caregivers. Qualitative data analysis was underpinned by a phenomenological approach utilising a data-driven inductive thematic frame.; Setting/participants: In total, 19 patients with advanced cancer who presented to Emergency Departments in the previous 6 months and 10 informal caregivers from an Australian public hospital and community palliative care service were interviewed.; Results: Patients reported that Emergency Department presentations were largely prompted by worsening symptoms or were a means to expedite hospital admission, with many instructed to attend by their health care provider. The experience in the Emergency Department was described as a time of anxiety and uncertainty with concerns over communication, the general environment and delays in the symptom management highlighted. Long waits were common. Despite this, patients described relief at receiving care. While the Emergency Department was viewed as a safety net for the health system, many believed advanced cancer patients should have alternative options.; Conclusion: Relatively simple changes of regular communication updates and early symptom relief would improve patient experience of Emergency Department care. However, since an Emergency Department presentation is frequently serving as a default to access medical care, a significant re-orientation of the health care system is required to meet patient needs.
Background: Many studies have separately addressed the associations of informal caregiving with coresidence, a caregiver's work status, and health conditions, but not jointly. We examined how their parents' need for care affects middle-aged women's lifestyle and psychological distress, considering the potential simultaneity of decisions on caregiving and living adjustments.; Methods: We used 22,305 observations of 7037 female participants (aged 54-67 years) from a nationwide longitudinal survey in Japan conducted during 2009 and 2013. We considered the occurrence of parents' need for care (OPNC) as an external event and estimated regression models to explain how it affected the probabilities of the participants becoming caregivers, coresiding with parents, and working outside the home. We further conducted the mediation analysis to examine how the impact of OPNC on participants' psychological distress measured by Kessler 6 (K6) scores was mediated by caregiving and living adjustments.; Results: OPNC made 30.9% and 30.3% of middle-aged women begin informal caregiving for parents and parents-in-law, respectively, whereas the impact on residential arrangement with parents or work status was non-significant or rather limited. OPNC raised middle-aged women' K6 scores (range: 0-24) by 0.368 (SE: 0.061) and 0.465 (SE: 0.073) for parents and parents-in-law, respectively, and informal caregiving mediated those impacts by 37.7% (95% CI: 15.6-68.2%) and 44.0% (95% CI: 22.2-75.4%), respectively. By contrast, the mediating effect of residential arrangement with parents or work status was non-significant.; Conclusions: Results underscore the fact that OPNC tends to promote middle-aged women to begin informal caregiving and worsen their psychological distress.
Background and Purpose: The aim of this article was to analyze the likelihood of receiving informal care after a stroke and to study the burden and risk of burnout of primary caregivers in Spain.; Methods: The CONOCES study is an epidemiological, observational, prospective, multicenter study of patients diagnosed with stroke and admitted to a Stroke Unit in the Spanish healthcare system. At 3 and 12 months post-event, we estimated the time spent caring for the patient and the burden borne by primary caregivers. Several multivariate models were applied to estimate the likelihood of receiving informal caregiving, the burden, and the likelihood of caregivers being at a high risk of burnout.; Results: Eighty percent of those still alive at 3 and 12 months poststroke were receiving informal care. More than 40% of those receiving care needed a secondary caregiver at 3 months poststroke. The likelihood of receiving informal care was associated with stroke severity and the individual's health-related quality of life. When informal care was provided, both the burden borne by caregivers and the likelihood of caregivers being at a high risk of burnout was associated with (1) caregiving hours; (2) the patient's health-related quality of life; (3) the severity of the stroke measured at discharge; (4) the patient having atrial fibrillation; and (5) the degree of dependence.; Conclusions: This study reveals the heavy burden borne by the caregivers of stroke survivors. Our analysis also identifies explanatory and predictive variables for the likelihood of receiving informal care, caregiver burden, and high risk of burnout.
Background: With a rise in the aging population and a consequential rise in persons diagnosed with dementia comes an increase in the number of informal caregivers who are caring for a loved one. The objective of the proposed study was to assess the neurocognitive and psychological effects of caring for a person with dementia or a related neurodegenerative disease in a sample of Canadian informal caregivers.; Methods: Fifty-seven informal caregivers of a person with dementia or a related neurodegenerative disease (mean age = 66.26, SD = 7.55) and 97 non-caregivers (mean age = 69.16, SD = 4.84) were recruited. Neuropsychological measures of attention, cognitive flexibility, verbal learning, delayed recall, and verbal fluency were examined, and questionnaires related to perceived stress, quality of life, mood, and self-esteem were administered.; Results: Caregivers made more errors on a measure of cognitive flexibility (p = 0.02), generated fewer words on measures of phonemic fluency (p < 0.01) and semantic fluency (p < 0.001), and learned significantly fewer words on a list-learning task (p < 0.01). Caregivers also reported experiencing significantly more perceived stress (p < 0.001), lower quality of life (p < 0.001), and were more likely to meet the cut-off for clinically significant depressive symptoms on a self-report scale (p < 0.001).; Conclusion: These data contribute to a growing body of literature that consistently points to the need for immediate action to improve the welfare of caregivers.
Objective: The aim was to quantify caregiver distress among informal caregivers of individuals with schizophrenia or schizoaffective disorder and identify its correlates.; Methods: From December 2014 through April 2015, ads posted with mental health advocates and the media recruited informal caregivers, age ≥21 years, to complete an online questionnaire. It included the ten-item Perceived Stress Scale (PSS) (0, no distress; 39, highest) and hypothesized distress correlates in four groups: caregiver and care recipient characteristics; caregiver role demands; caregiver social supports; and caregiver cognitive appraisals of caregiving. Three hypotheses were tested: first, distress is significantly related to variables from each group; second, social supports moderate the effects of role demands on distress; and third, cognitive appraisals mediate the effects of role demands on distress. Hypotheses were tested with multiple linear regression equations and structural equation models (SEMs).; Results: Of 2,338 Web site "hits," 1,708 individuals consented, 1,398 were eligible, and 1,142 had complete data. Most caregivers were women (83%), white (89%), and college educated (59%), with a mean±SD age of 55.6±13.0. Compared with U.S. norms on the PSS (13.4±6.5), mean caregiver distress was high (18.9±7.1). According to SEMs, variables from each group were associated with distress. Contributing most to greater distress were caregiver health problems, providing frequent caregiving assistance, monitoring medication, having limited social support, and appraising caregiving negatively. Cognitive appraisals mediated the effects of demands on distress. Social support had a significant direct effect only.; Conclusions: Caregiver distress was relatively high and related to multiple variables, some of which are potentially modifiable.
Background: Many psychosocial and behavioral interventions have been developed for informal dementia caregivers. Because existing meta-analyses only focused on a limited number of interventions and outcomes, how effective these interventions are overall and which interventions components are associated with larger effects has yet to be explored.; Objective: To provide a comprehensive meta-analysis of the effectiveness of psychosocial and behavioral interventions on burden, depression, anxiety, quality of life, stress, and sense of competence in informal dementia caregivers. In addition, we examined if interventions which utilized more sessions and/or were delivered personally (face-to-face) had larger effect sizes. In exploratory meta-regressions, we examined seven additional moderators.; Methods: The protocol was registered with PROSPERO, number CRD42017062555. We systematically searched the literature to identify controlled trials assessing the effect of psychosocial and behavioral interventions on the six outcome measures, for informal dementia caregivers. We performed six random effects meta-analyses, to assess the pooled effect sizes of the interventions. In addition, we performed separate meta-regressions, for each outcome, for each moderator.; Results: The sample consisted of 60 studies. For all outcomes except anxiety, the pooled effects were small and in favor of the intervention group. No moderator was found to systematically predict these effects. There were no indications for publication bias or selection bias based on significance.; Conclusion: Overall, the interventions yield significant (small) effects, independent of intervention characteristics. Future research should explore options to enhance the effectiveness of interventions aimed at assisting informal caregivers.
This exploratory study considered the role of informal carers and their decision-making regarding various aged care services that supposedly support their ageing relatives. Consideration was given to the stressors and overall well-being of informal carers and the support services they did or did not receive during their time of caregiving. A questionnaire was utilised to gain exploratory quantitative and qualitative data plus basic demographic information from informal carers who connected with a single caregiver association based in Victoria, Australia. Several themes emerged from the analysis of data regarding carer well-being, carer decision-making and carer relationships-particularly with respect to the various authorities and organisations ostensibly responsible for supporting carers. While the majority of participants indicated a religious association, nevertheless spiritual considerations were not stress factors paramount in their decision-making or their criticism of carer support services. Other concerns dominated such as the need of having appropriate practical support, better case management, organisational transparency and greater recognition of the role of informal carers. Although this research was isolated to a particular locality, carers in similar situations globally have indicated comparable stresses and challenges further indicating that greater accountability and improved organisation are required for the support of carers internationally. Recommendations are suggested for how service providers can support carers-most importantly, the need for ongoing government assessment and government service improvement in order to help carers care into the future.
Social exclusion has a negative impact on quality of life. People living with dementia or mental health disorders as well as informal carers have been separately described as socially excluded. The objective of this systematic narrative review was to examine the extent to which social exclusion experienced by adult informal carers of people living with dementia or severe mental health disorders has been identified and described in research literature. It synthesised qualitative and quantitative evidence and included the perspectives of carers themselves and of professionals. Eight electronic databases (1997-2017) were searched. Five relevant studies published between 2010 and 2016 were identified. All were qualitative and used interviews and focus groups. Study quality was variable and most were European. Two focused on carers of people living with dementia and three on carers of people with mental health disorders. Four investigated carers' perspectives and experiences of social exclusion directly (total of 137 carer participants, predominantly parents, spouses and adult children), while the fifth focused on the perceptions of 65 participants working in health and social care. Stigma, financial difficulties and social isolation were highlighted in four studies and the challenges for carers in engaging in leisure activities were described in the fifth. Most conceptualised social exclusion as a form of stigma, or as resulting from stigma. One presented social exclusion as an element of carer burden. Two explicitly discussed the negative effects of social exclusion on carers. The dearth of research and the lack of specificity about social exclusion in carers was surprising. Future research should investigate aspects of social exclusion that may adversely affect carer wellbeing.;
Objective: To verify the association between the level of comfort of the caregiver and socio-demographic variables related to caregiving, and the patient's functional status and symptoms.; Method: Cross-sectional study with non-probabilistic intentional sample. The instruments Palliative Performance Scale (score 0 to 100%), Edmonton Symptom Assessment Scale (symptom scores from zero to ten) and Holistic Comfort Questionnaire (total score ranging from 49 to 294 and mean score from 1 to 6) were used. The relationship between comfort scores and independent variables was calculated by multiple linear regression.; Results: Fifty informal caregivers participated in the study - 80% were female, 32% were 60 years old or older, 36% were children of the patient, 58% had paid work and 60% did not have help in the care. The mean overall comfort was 4.52 points. A better functional status of the patients was associated with higher levels of comfort of the caregivers. Older caregivers who received helped in the care activities presented higher comfort scores.; Conclusion: The level of comfort of caregivers of cancer patients receiving palliative care was associated with socio-demographic variables and patients' functional status and symptoms.
Background: Older people with multi-morbidity are major users of healthcare and are often discharged from hospital with ongoing care needs. This care is frequently provided by informal caregivers and the time immediately after discharge is challenging for caregivers with new and/or additional tasks, resulting in anxiety and stress.; Aim: This study aimed to describe mental health, with particular reference to anxiety and depression and reactions to caregiving, and to investigate any associations between the two, in next of kin of older people with multi-morbidity after hospitalisation. It also aimed to explore the association between the demographic characteristics of the study group and mental health and reactions to caregiving.; Methods: This was a cross-sectional questionnaire study using the Hospital Anxiety and Depression Scale and the Caregiver Reaction Assessment. The study group consisted of 345 next of kin of older people (65+) with multi-morbidity discharged home from 13 medical wards in Sweden. Data were analysed using descriptive and analytical statistics. To identify whether reactions to caregiving and next of kin characteristics were associated with anxiety and depression, a univariate logistic regression analysis was performed.; Results: More than one quarter of respondents showed severe anxiety and nearly one in 10 had severe depressive symptoms. The frequencies of anxiety and depression increased significantly with increased negative reactions to caregiving and decreased significantly with positive reactions to caregiving. Regarding caregiving reactions, the scores were highest for the positive domain Caregiver esteem, followed by the negative domain Impact on health. Women scored significantly higher than men on Impact on health and spouses scored highest for Impact on schedule and Caregiver esteem.; Conclusions: Nurses and other healthcare professionals may need to provide additional support to informal caregivers before and after discharging older people with significant care needs from hospital. This might include person-centred information, education and training.
Background: Dementia can have significant detrimental impacts on the well-being of those with the disease and their carers. A range of computer-based interventions, including touchscreen-based interventions have been researched for use with this population in the hope that they might improve psychological well-being. This article reviews touchscreen-based interventions designed to be used by people with dementia (PWD), with a specific focus in assessing their impact on well-being.; Method: The data bases, PsycInfo, ASSIA, Medline, CINAHL, and Cochrane Reviews were searched for touchscreen-based interventions designed to be used by PWD with reported psychological well-being outcomes. Methodological quality was assessed using Pluye and Hong's (2014) Mixed Methods Appraisal Tool (MMAT) checklist.; Results: Sixteen papers were eligible. They covered 14 methodologically diverse interventions. Interventions were reported to be beneficial in relation to mental health, social interaction, and sense of mastery. Touchscreen interventions also reportedly benefit informal carers in relation to their perceived burden and the quality of their relationships with the people they care for. Key aspects included the user interface, provision of support, learning style, tailored content, appropriate challenge, ergonomics, and users' dementia progression.; Conclusions: Whilst much of the existing research is relatively small-scale, the findings tentatively suggest that touchscreen-based interventions can improve the psychological well-being of PWD, and possibilities for more rigorous future research are suggested.
Aims In occupational settings, burnout is a common response to chronic exposure stressors and has been frequently documented in formal caregivers (i.e. paid psychiatric staff). However, the literature is limited on reports of burnout among informal caregivers and particularly within early psychosis groups. The current study sought to investigate reports of burnout in carers of young adults treated within a specialist early psychosis service and links with key appraisals reported about the illness and coping. Methods Seventy-two carers completed the Maslach Burnout Inventory along with self-report measures of coping styles and illness beliefs. Results Seventy-eight per cent of carers reported high burnout in at least one of the three key burnout markers (i.e. emotional exhaustion, depersonalization or low personal accomplishment). Seven per cent of carers met full criteria for high burnout across all the three domains. A carer's belief about the negative consequences of the illness for themselves was a significant predictor of emotional exhaustion and depersonalization. Low personal accomplishment was linked to a carer's less optimistic beliefs about the illness timeline and fewer reports of adaptive coping. Conclusions The results provide preliminary support for the importance of asking carers in the early illness phase about their experiences of caregiving. Targeted assessment may serve as a helpful tool to identify and intervene with carers in need of additional support with stress management, use of adaptive coping strategies, and balanced recovery focused information about psychosis.
Burden is a negative psychological state induced in caregivers by the demands of providing care to a person with an illness or a disability. Managing caregiver burden in Parkinson disease (PD) is significant because informal caregivers make a substantial contribution to the well-being of persons with PD, incurring financial, social, and personal losses. Failure to recognize and manage caregiver burden may lead to burnout and premature institutionalization of the person with PD. We conducted a comprehensive literature review to identify and summarize factors that may amplify burden, including motor and nonmotor symptoms of PD, caregiver psychiatric symptoms, and caregiver coping style. We review instruments designed to sample the construct of burden among caregivers and evaluate interventions that may reduce burden, either by directly targeting caregivers or by treating PD symptoms associated with burden. We aim to provide a concise synopsis of these issues for the clinician or researcher working with this population in order to facilitate recognition of caregiver burden, provide accurate assessment, administer appropriate interventions, and stimulate further research in this area.
Caregiver burnout is a serious concern among informal caregivers, especially for those who provide care to individuals with more severe limitations such as power mobility users. The Power Wheelchair Caregiver Assistive Technology Outcome Measure tool measures device specific and overall burden experienced by informal caregivers of power mobility users. A one-month, test-retest study was conducted to examine the reliability, internal consistency, and construct validity of the Power Wheelchair Caregiver Assistive Technology Outcome Measure. Two construct validity measures were administered: the Hospital Anxiety and Depression Scale and the Late Life Disability Index. The test-retest-reliabilities of part 1 (power wheelchair specific burden) and part 2 (general caregiving burden) were 0.769 and 0.843 respectively. Scores on part 1 were moderately and positively correlated with part 2 and with frequency of participation. Scores on part 2 were moderately and negatively correlated with anxiety, depression, and positively with perceived limitation of participation. The strength and direction of these correlations provide support for the construct validity of the measure and suggest part 1 and part 2 provide complementary information. Further testing is needed to assess the clinical utility and responsiveness of the measure.
Purpose: The experiences, skills, and internal resources that informal caregivers bring into their role may play a critical part in their mental health and well-being. This study examined how caregiver internal resources changed over a 10 year period, and how this was related to caregivers' well-being.; Methods: Data are from the Midlife in the United States (MIDUS) study, a national sample of adults, at two time points: 1995-1996 (T1) and 2004-2006 (T2). We identified subjects who reported being a caregiver at T2 and starting care after T1 (mean age = 56; 65% female). We examined internal resources: sense of control (personal mastery); primary and secondary control strategies (persistence in goal striving, positive reappraisal, and lowering expectations); and social support seeking, and psychological and subjective well-being. We evaluated how internal resources changed over time, and how these trajectories were associated with well-being at T2 using multivariable linear regressions.; Results: Most caregivers had stable levels of internal resources (between 4 and 13% showed an increase or decrease). Caregivers with increasing or high-stable levels of personal mastery had significantly better well-being scores on 6 out of 8 subscales compared with low-stable levels [effect sizes (ES) between 0.39 and 0.79]. Increasing persistence was associated with better personal growth and environmental mastery (ES = 0.96 and 0.91), and increasing and high-stable positive reappraisals were associated with better affect (ES = 0.63 and 0.48) compared with low-stable levels. Lowering aspirations and support seeking were not associated with well-being outcomes.; Conclusions: Practices or interventions that support or improve internal resources could potentially improve caregiver well-being.
Objectives: To investigate informal caregivers' psychological well-being and predicted increase in psychological well-being, when caring for persons with dementia (PwDs) living at home, related to caregiver, PwD and formal care (FC) factors.; Method: A cohort study at baseline and 3 months' follow-up in eight European countries. Caregivers included (n = 1223) were caring for PwDs aged ≥ 65 years at home. Data on caregivers, PwDs and FC were collected using standardized instruments. Regression analysis of factors associated with caregiver psychological well-being at baseline and 3 months later was performed.; Results: Factors associated with caregiver psychological well-being at baseline were positive experience of caregiving, low caregiver burden, high quality of life (QoL) for caregivers, male gender of PwD, high QoL of PwD, few neuropsychiatric symptoms and depressive symptoms for the PwD. At follow-up, caregivers with increased psychological well-being experienced of quality of care (QoC) higher and were more often using dementia specific service. Predicting factors for caregivers' increased psychological well-being were less caregiver burden, positive experience of caregiving, less supervision of the PwD and higher caregiver QoL, if PwD were male, had higher QoL and less neuropsychiatric symptoms. Furthermore, higher QoC predicted increased caregivers' psychological well-being.; Conclusion: Informal caregiving for PwDs living at home is a complex task. Our study shows that caregivers' psychological well-being was associated with, among other things, less caregiver burden and higher QoL. Professionals should be aware of PwD neuropsychiatric symptoms that might affect caregivers' psychological well-being, and provide proper care and treatment for caregivers and PwDs.
Although high-intensity caregiving has been found to be associated with a greater prevalence of mental health problems, little is known about the specifics of this relationship. This study clarified the burden of informal caregivers quantitatively and provided policy implications for long-term care policies in countries with aging populations. Using data collected from a nationwide five-wave panel survey in Japan, I examined two causal relationships: (1) high-intensity caregiving and mental health of informal caregivers, and (2) high-intensity caregiving and continuation of caregiving. Considering the heterogeneity in high-intensity caregiving among informal caregivers, control function model which allows for heterogeneous treatment effects was used.This study uncovered three major findings. First, hours of caregiving was found to influence the continuation of high-intensity caregiving among non-working informal caregivers and irregular employees. Specifically, caregivers who experienced high-intensity caregiving (20-40 h) tended to continue with it to a greater degree than did caregivers who experienced ultra-high-intensity caregiving (40 h or more). Second, high-intensity caregiving was associated with worse mental health among non-working caregivers, but did not have any effect on the mental health of irregular employees. The control function model revealed that caregivers engaging in high-intensity caregiving who were moderately mentally healthy in the past tended to have serious mental illness currently. Third, non-working caregivers did not tend to continue high-intensity caregiving for more than three years, regardless of co-residential caregiving. This is because current high-intensity caregiving was not associated with the continuation of caregiving when I included high-intensity caregiving provided during the previous period in the regression. Overall, I noted distinct impacts of high-intensity caregiving on the mental health of informal caregivers and that such caregiving is persistent among non-working caregivers who experienced it for at least a year. Supporting non-working intensive caregivers as a public health issue should be considered a priority.
Informal caregiving can be fundamental to disease management. Yet, the psychosocial, physical, and financial burden experienced by caregivers can be significant. In the US, Latinos experience increasing rates of chronic conditions, the highest uninsured rates in the country, and a growing dependence on informal caregivers. This article explores the impact of caregiving on caregivers of individuals with comorbid chronic disease and depression. Findings highlight the impact of caregiving on financial insecurity, balancing competing demands, increased emotional distress, and community supports. Findings support the inclusion of caregivers in disease management programs to enhance psychosocial outcomes for both caregivers and their patients.
The shift in care from long-term hospitalization of individuals with mental illness to the community places a greater onus of responsibility on informal caregivers. The purpose of the current study was to explore the lived experiences of long-term caregivers of individuals with unipolar depression. A qualitative phenomenological methodology was used and two sets of semi-structured interviews were conducted with nine informal caregivers. Data were transcribed following Giorgi's phenomenological method. The following three themes were identified: Flooded by Emotions, Personal Growth and Satisfaction, and Psychosocial Effects and Challenges. Caregivers described adapting by adjusting their behavior to avoid conflict with care recipients. These adjustments had a detrimental effect on their well-being, where they described that they were "existing but not living." These findings highlight the need for ongoing support, which should be tailored to the unique needs and concerns of individuals who are providing long-term care to individuals with depression.
Purpose of the Study: Objective (physical) caregiving burden has not often been associated with subjective (emotional) burden among Mexican-origin women caregivers. Yet, many studies show that Latina caregivers suffer from negative psychological outcomes related to caregiving at a higher rate than non-Latino Whites. This study considered whether self-rated intensity of ADL/IADL support explained the relationship between number of care recipient illnesses and caregiver emotional drain among Mexican American women caregivers.; Design and Methods: Participants included Mexican-origin women caregivers (n = 132) in East Los Angeles, CA who completed a survey that asked culturally appropriate questions about their experiences caring for elderly relatives.; Results: Logistic regression models indicated that ADL/IADL supports ranked as difficult were also chosen as causing emotional drain. Mediation models revealed a significant indirect effect of number of care recipient illnesses on caregiver emotional drain for English-speaking caregivers but not for Spanish-speaking caregivers. These results indicate that Mexican-origin women caregivers do experience subjective burden associated with specific objective ADL/IADL supports and suggest that culturally relevant survey design can assist in better understanding the emotional drain among this population.; Implications: Cultural values should be considered when discussing aspects of care provision with Mexican-origin women caregivers in order to elicit an accurate description of their informal caregiving experiences that may contribute to caregiver burden.
Affiliated stigma often refers to internalized stigma among family members of stigmatized individuals. This study aimed to investigate the relationship between affiliate stigma and quality of life (QOL) among primary caregivers of individuals with mental illness undergoing treatment at the Institute of Mental Health, Singapore. Three hundred and fifty caregivers were recruited for the study. The World Health Organization Quality of Life questionnaire (WHOQOL-BREF) and Family Stigma Scale (FSS) were administered to the primary caregivers of patients with mental illness. Multiple linear regression analyses were conducted to investigate the association of affiliate stigma with QOL. A high proportion of caregivers of individuals with mental illness experience affiliate stigma in Singapore. All four QOL domains were significantly associated with affiliate stigma. These findings entail that it is imperative to improve public's perception of those with mental illness to reduce stigmatization and thus improve caregiver's QOL.
Liver transplantation ( LT) is a transformative, life-saving procedure with life-long sequale for patients and their caregivers. The impact of LT on the patient's main caregiver can be underestimated. We carried out a systematic review of the impact of LT on the Health-Related Quality of Life ( HRQL) of LT patients' main caregivers. We searched 13 medical databases from 1996 to 2015. We included studies with HRQL data on caregivers of patients following LT then quality assessed and narratively synthesized the findings from these studies. Of 7076 initial hits, only five studies fell within the scope of this study. In general, they showed caregiver burden persisted in the early period following LT. One study showed improvements, however, the other four showed caregiver's levels of stress, anxiety and depression, remained similar or got worse post- LT and remained above that of the normal population. It was suggested that HRQL of the patient impacted on the caregiver and vice versa and may be linked to patient outcomes. No data were available investigating which groups were at particular risk of low HRQL following LT or if any interventions could improve this. The current information about LT caregivers' needs and factors that impact on their HRQL are not adequately defined. Large studies are needed to examine the effects of LT on the patients' family and caregivers to understand the importance of caregiver support to maximize outcomes of LT for the patient and their caregivers.
Aims and objectives: To explore the experiences of female spousal caregivers in the care of husbands with severe mental illness. Background: Family involvement in the care of patients with chronic illness is essential to provide a backbone of support for them. However, little is known about how female spousal caregivers are confronted with challenges while taking care of their husbands with severe mental illness. Design: An exploratory qualitative study. Methods: Fourteen female spousal caregivers of people with severe mental illness (defined here as schizophrenia, schizoaffective disorders and bipolar affective disorders) were recruited using purposive sampling and were interviewed using a semistructured in‐depth interview method. Data were analysed by conventional content analysis until data saturation was achieved. Results: Care of a husband with severe mental illness had a disruptive influence on the emotional relationships of the family and resulted in emotional detachment over time. Despite the caregivers’ struggle to protect their families, the lack of supportive resources caused emotional exhaustion. Caregiving tasks interfering with their many other responsibilities, along with being a reference for family matters, led to loss of self. Consequently, they experienced psychological distress because of the transition to a caregiver role without any supportive resources. Conclusion: Constant caring, without supportive resources, forced them to do various roles and manage other issues within the family. Being unprepared for a caregiving role led to the psychological distress of female spousal caregivers. Therefore, adequate information, education and supportive resources must be provided for spouses to facilitate their transition to caregiving roles. Relevance to clinical practice: It is necessary to pay close attention to the spousal caregivers’ own mental health problems while they care for their mentally ill husbands. Mental health professionals should adopt a new approach to the prioritisation and planning of policies that support both family caregivers and patients.
Objectives: To prospectively investigate the impact of transitions in informal caregiving on emotional well-being over two years in a large population study of older people. Methods: Information on provision of unpaid care in 2004/2005 and 2006/2007 was available for 6571 participants in the English Longitudinal Study of Ageing. Three well-being domains were also assessed on each occasion: life satisfaction (measured with the Satisfaction with Life Scale); quality of life (assessed with the CASP-19 scale); and depression symptoms (measured using the Centers for Epidemiologic Studies Depression Scale). Multivariable analyses of the impact on well-being of two-year caregiving transitions (caregiving entry and caregiving exit, or continued caring) were conducted separately for spousal/child carers and carers of other family/non-relatives. Results: Compared to non-caregiving, entry into spousal/child caregiving was associated with decline in quality of life (B= −1.60,p< .01) whereas entry into caregiving involving other kin relations increased life satisfaction (B= 1.02,p< .01) and lowered depression symptoms (B= −0.26,p< .05). Contrary to expectations, caregiving exit was related to increased depression in both spousal/child (B= 0.44,p< .01) and non-spousal/child (B= 0.25,p< .05) carers. Continued spousal/child caregiving was also related to decline in quality of life (B= −1.24,p< .05). Other associations were suggestive but non-significant. Conclusion:The emotional impact of different caregiving transitions in later life differs across kin relationships; notably, spousal and child carers' well-being was consistently compromised at every stage of their caregiving career over the two-year study period.
Background: The experience of caring for a family member with cancer is associated with several care‐related problems and challenges for the caregiver. The comprehensive and in‐depth understanding of the trials and tribulations of caregiving can be a step towards resolving the problems faced by family caregivers of these patients. Aim: The present study aimed to explore challenges faced by Iranian family caregivers of cancer patients. Materials and methods: The present qualitative study was conducted through in‐depth semi‐structured interviews held with 21 family caregivers of cancer patients selected through purposive sampling. Interviews continued until saturation of data. All interviews were recorded, transcribed and analysed through conventional content analysis. Finding: The codes extracted from interviews produced four main themes, including ‘confusion’, ‘uncertainty’, ‘disintegration’ and ‘setback’, which collectively caused suffering for family caregivers. Conclusion: Care provided in an atmosphere of suffering and discontent diminishes caregiver's quality of life and quality of patient care. Health planners should therefore consider the challenges and sufferings faced by family caregivers and should seek to obviate them through appropriate plans.
There have been several violence-related deaths in Japan due to family violence by persons with severe mental illness against their caregivers. However, it is not often acknowledged that these violent acts are mainly directed at family members. This study aimed to clarify what acts of violence family caregivers experienced from their relative with schizophrenia, and how frequently these violent incidents occurred in their lifetime. We also examined caregivers’ thoughts of death about themselves and their relatives, as well as their consultation efforts and escape from the violence perpetrated by their relative. Of the 277 caregivers, 87.7% had experienced psychological violence and 75.8% had experienced physical violence perpetrated by their relative. Of 210 caregivers who had experienced physical violence, 26.7% had thought of murder-suicide and 31.0% had wished for their relative’s death. Family violence by persons with schizophrenia is not rare but a common occurrence in Japan and may have fatal consequences.
We examined psychological parameters in family caregivers of palliative cancer patients before and after the death of the patients. Caregivers’ data about depression and anxiety (Hospital Anxiety and Depression Scale), quality‐of‐life (Short Form‐8 Health Survey), and social support (Oslo Social Support Scale) were collected at the beginning of home care (t1) and 2 months after the patient had died (t2). Regression models were employed to examine factors related to depression and anxiety in the bereaved caregivers. We interviewed 72 relatives, who were the primary caregiver of a patient. One‐third (31.9%) of caregivers had high anxiety levels and 29.2% had high depression levels (t1, cut‐off = 10). At t2, anxiety and depression had decreased significantly. There were no changes in quality‐of‐life over time. At both points of assessments, quality‐of‐life was lower than in the general population. Relevant factors for higher anxiety and depression in the bereaved caregivers were high levels of distress at t1, insufficient social support and low physical function. Bereaved caregivers were particularly depressed when they had been the spouse of the patient. Healthcare professionals should consider social isolation of caring relatives both during homecare and afterwards. Thus, it seems to be important to routinely offer support to spouses.
The broad spectrum of problems caused by caring for a patient with mental illness imposes a high burden on family caregivers. This can affect how they cope with their mentally ill family members. Identifying caregivers' experiences of barriers to coping is necessary to develop a program to help them overcome these challenges. This qualitative content analysis study explored barriers impeding family caregivers' ability to cope with their relatives diagnosed with severe mental illness (defined here as schizophrenia, schizoaffective disorders, and bipolar affective disorders). Sixteen family caregivers were recruited using purposive sampling and interviewed using a semi-structured in-depth interview method. Data were analyzed by a conventional content analytic approach. Findings consisted of four major categories: the patient's isolation from everyday life, incomplete recovery, lack of support by the mental health care system, and stigmatization. Findings highlight the necessity of providing support for caregivers by the mental health care delivery service system.
Background and Objectives: Family caregivers (CGs) are critical to the provision of long-term services and support for older adults. Numerous intervention programs to alleviate CG distress have been developed and evaluated yet few have been implemented in community settings. This paper describes and presents outcomes from Community REACH, a community implementation of the evidence-based Resources for Enhancing Alzheimer's Caregiver Health (REACH) II program. Research Design and Methods: Community REACH involved a partnership between REACH II investigators and United HomeCare Services (UHCS), a nonprofit home health organization that provides home health, personal care, companion, and respite services. The intervention program, an adapted version of an evidence-based program, was a 6-month multicomponent psychosocial intervention, which involved six individual face-to-face and six individual telephone sessions, and telephone support groups. One hundred and forty-six CGs who were primarily female (76%) and Latino, and providing care for an individual with Alzheimer's disease (AD) were enrolled. Program effectiveness was assessed by examining changes in perceived social support, burden, and depression, and CG self-efficacy. Results: At 6 months, CGs reported significant decreases in depression, burden, being and bothered by the care recipient's memory problems. There was also a significant decline in the number of CGs at risk for clinical depression. These improvements were maintained at 12 months and there was an increase in feelings of social support. Discussion and Implications: The findings indicate that evidence-based CG programs can be successfully implemented in community settings and benefit CGs of AD patients. A continued partnership between the program developers and community partners is key to implementation success.
Context: Many family caregivers are not prepared for the death of their family member or friend. Palliative care services tend to emphasize the patients' preparation for death rather than caregivers' preparation for, or living after, death. Caregivers' perspectives on anticipating and preparing for death are under-researched, despite preparation being associated with better bereavement outcomes. Objectives: The objective was to explore family caregivers' preparations for death. Methods: A total of 16 family caregivers of people in receipt of palliative care participated in semi-structured, face-to-face interviews. Transcripts were coded and analyzed using grounded theory techniques. Results: Analysis yielded two overarching themes: Here and Now centered on the caregivers' focus on the multidimensional and all-consuming nature of caregiving for someone who is near death. Negotiating the Here/After described the tension the caregivers faced in vacillating between focusing on the care during the illness trajectory (Here) and worries and plans for the future (After). Conclusion: This exploratory study is the first to focus solely on family caregivers' experiences of preparing for a death. The caregivers described the complexities of trying to prepare while feeling overwhelmed with demands of caregiving throughout an unpredictable illness trajectory. The caregivers in the present study were cognitively prepared, some were behaviorally prepared, but emotional preparedness was challenging. Services should not assume that all family caregivers are well-prepared for the death. Caregivers would likely benefit from the assessment and promotion of their death preparedness.
Objective: The psychological and psychiatric symptoms of terminally ill cancer patients are highly problematic and have been associated with greater burden among caregivers. Until now, the extent of these problems in the home care setting was unclear.; Methods: This retrospective study was conducted as part of a nationwide survey from the perspective of bereaved family members in Japan (J-HOPE3). The bereaved family members rated the symptoms of delirium and suicidal ideation of patients with cancer, and the sleeplessness and depressed mood of family caregivers utilizing home care services in the one month before the patients' deaths. Regression analyses were performed to identify factors associated with caregivers' sleeplessness or depressed mood.; Results: Of the 532 subjects analyzed, between 17% and 65% of patients experienced various symptoms of delirium, and 27% suicidal ideation. Among family caregivers, 60% experienced sleeplessness and 35% experienced depressed mood at least once during the week. Caregivers' psychological symptoms were associated with their own poor health status, being the spouse of the patient, and the patients' psychological or psychiatric symptoms. To manage patients' symptoms, 11% of caregivers had consulted psychiatrists or psychologists while another 11% wanted to do so.; Conclusion: Psychological problems assessed were common among patients with cancer and their family caregivers in the one month of home care prior to the patient's death. An effective complementary care system, run by home-visit physicians, nurses, and experts in mental disorders, is needed.; Copyright © 2017 Elsevier Inc. All rights reserved.
Aims and Objectives: To examine influencing factors of health-related quality of life in primary family caregivers of people with schizophrenia receiving inpatient psychiatric rehabilitation services.; Background: Families, particularly primary family caregivers, have become more important than ever in mental health care. Yet, research on health-related quality of life among primarily family caregivers is limited.; Design: A correlational study design was used.; Methods: A convenience sample of 122 primary family caregivers participated in the study. Data were analysed with descriptive statistics, Pearson's product-moment correlation, t test, one-way analysis of variance and a hierarchical multiple regression analysis.; Results: Primary family caregivers who were parents, older, less educated, and had a lower monthly household income, increased affiliate stigma and decreased quality of family-centred care experienced poor health-related quality of life. Particularly, monthly household income, affiliate stigma and quality of family-centred care appeared to be the most critical determinants of health-related quality of life.; Conclusions: Efforts to enhance satisfaction of life should focus on reducing affiliate stigma as well as increasing monthly household income and strengthening the quality of family-centred care.; Relevance To Clinical Practice: Findings may assist in the development of culturally integrated rehabilitation programmes to decrease affiliate stigma and increase family engagement as a means of promoting quality of life for primary family caregivers living with people who have schizophrenia.; © 2017 John Wiley & Sons Ltd.
Family caregivers' physical and emotional well-being may be negatively impacted while in the caregiver role. Interventions to support caregiver health have largely focused on psychological support, with only a few studies to date evaluating the role of exercise. Of the exercise studies conducted, there has been one qualitative study examining caregivers' perspectives on the value and impact of this type of intervention. This qualitative study was part of a larger mixed methods investigation including a randomised controlled trial investigating the effects of a 24-week exercise programme for cancer caregivers conducted in western Canada. We aimed to explore cancer family caregivers' experience of participating in a structured exercise programme. We conducted face-to-face interviews with 20 of the participants from the exercise intervention and analysed transcribed data using Thorne's interpretive description as a guiding framework. Two main patterns characterised the experiences of the caregivers. The metaphor of a downward spiral represented the experience of being in the caregiver role, while the metaphor of an upward spiral represented the experience of participating in the exercise programme. Our findings highlight that caregivers valued the exercise programme, experienced positivity through exercise and the group-based format, and noticed improvements to their physical and emotional well-being.; © 2017 John Wiley & Sons Ltd.
Background: The amputation of a foot or a leg is one of the complications caused by diabetes that creates fear. After the amputation, the patient becomes dependent on a caregiver, who is often not prepared for this new phase of life. Knowing the factors that influence care delivery in caregivers of amputee type 2 diabetes patients is important from an heuristic point of view, since very few studies have focused on this population. Objectives: This study analysed the predictors and moderators of quality of life, in caregivers of amputee patients due to type 2 diabetes. Methods: This study has a cross‐sectional design. All ethical standards were followed in the conduct of this study. The sample comprised 101 caregivers who answered the following instruments: Carer's Assessment of Managing Index, Burden Assessment Scale, Depression Anxiety Stress Scales, Revised Impact of Events Scale, Family Assessment Device, Family Disruption from Illness Scale and the Short Form Health Survey‐36. Results: The practice of physical activity, lower burden, better family functioning and less traumatic symptoms were predictors of better mental quality of life. Having no chronic disease and less physical symptoms predicted better physical quality of life. Duration of care moderated the relationship between traumatic symptoms and mental quality of life, but not with physical quality of life. Receiving help in caregiving moderated the relationship between traumatic symptoms and mental quality of life. The limitations of this study include the exclusive use of self‐report instruments and the fact that the caregivers who have participated in this study were those who accompanied the patient to the hospital. Conclusion: In order to promote physical quality of life, future intervention programmes should consider the presence of chronic disease in the caregiver and the duration of care, as well as the caregivers’ physical symptoms.
Background: This study aimed to explore the psychological status and quality of life among primary caregivers of individuals suffering from various mental illnesses including early psychosis, chronic schizophrenia, depressive disorders, anxiety disorders and dementia.; Methods: A total of 350 primary caregivers with relatives seeking treatment at a tertiary psychiatric hospital were recruited for this study. Socio-demographic data was obtained and the brief version of the World Health Organisation Quality of Life instrument was used to assess caregiver's quality of life (QOL). Psychological status among primary caregivers was assessed using the General Anxiety Disorder - 7 item (GAD-7) and Patient Health Questionnaire - 9 item (PHQ-9) scales. Family Interview Schedule (FIS) was used to assess the impact of caregiving relating to social problems, interpersonal strain among family members, work related problems and financial difficulties as a result of their relative's illness. The socio-demographic and clinical correlates of QOL, PHQ-9 and GAD-7 were examined using multiple linear and logistic regression analyses. Associations between QOL domains and psychological status was examined using multiple linear regression analyses.; Results: The mean age of the primary caregivers was 49.7 years (SD = 13.2), ranging from 21 to 82 years, with a preponderance of females (67.6%), aged 50-64 years old (45.7%). Majority were of Chinese ethnicity (57.5%), had secondary level education (43.1%), were married (65.2%), and employed (64.9%). 18.3% of primary caregivers had symptoms of depression (based on PHQ-9 cut-off point of 10 or greater) while 12.7% had symptoms of anxiety (based on GAD-7 cut-off point of 10 or greater). Multiple linear and logistic regression analyses revealed that primary caregivers aged between 35-49 years and 50-64 years, unemployed, living with others, providing care to those diagnosed with dementia and who had higher FIS scores were significantly more likely to report symptoms of depression whilst those who cared for their son/daughter were less likely to be associated with symptoms of depression. Primary caregivers who had lower education, were living with others, were single or divorced/separated, were unemployed and with higher FIS scores were associated with lower QOL domain scores. Those with symptoms of depression were significantly associated with low QOL across all four domains, whilst those with symptoms of anxiety were significantly associated with low QOL in the social relationships domain.; Conclusion: Psychological status of caregivers in the current study was associated with the various domains of QOL. In particular, caregivers' symptoms of depression were significantly associated with lower QOL across all four domains of QOL whereas symptoms of anxiety were associated with lower scores in the social relationships domain. The study suggests a need to provide caregivers with social support and psycho-education to improve the QOL as well as aid in developing healthy coping strategies.
Background/Objective: The Devaluation of Consumer Families Scale (DCFS) is commonly used to measure perceived stigma towards family members of people with mental illness. However, its factorial structure has never been confirmed using confirmatory factor analysis (CFA). This study aimed to test the psychometric properties of the DCFS Taiwan version (DCFS-TW). Method: Family caregivers (N=511) completed the DCFS-TW (97 completed the DCFS again after 2 to 4 weeks) and other instruments. CFA, test-retest reliability, internal consistency, concurrent validity, and known-group validity were analyzed. Results: The three-factor structure of the DCFS-TW performed better than the one-factor structure. Test-retest reliability (r = .66) and internal consistency were satisfactory (α = .85); concurrent validity (absolute r = .20 to .58) was acceptable; known-group validity was supported by the significantly different DCFS-TW scores in clinical characteristics (had been vs. had not been hospitalized; had been vs. had not been compulsorily admitted). Conclusions: The DCFS-TW has decent psychometric properties and is suitable for health professionals to measure perceived stigma towards family members of people with mental illness. (English
This cross-sectional study aimed to investigate the relationship between caregivers and care receivers, defined as home-dwelling family members with dementia. We used a self-rating questionnaire, the Felt Expressed Emotion Rating Scale (FEERS; 6 simple questions), to measure caregiver perceptions of the care receiver's criticisms (CCs) and emotional overinvolvement (EOI) toward the caregiver. We performed factor analyses to rank single items on the FEERS pertaining to CC and EOI. We included 208 caregiver/care receiver pairs. Logistic regression analyses tested associations between FEERS items and caregiver and care receiver variables. The main contributors to caregiver perceptions of CC were the caregiver's own distress and the amount of time spent with the care receiver. Socially distressed caregivers perceived the care receiver as emotionally overinvolved. When offering a psychosocial intervention, a tailored program should target the caregiver's perceived relationship with the family member and the caregiver's distress. The program should also endeavor to give the caretaker more opportunities for leisure time.
Background: Caring for a family member with dementia is stressful. This study explores carers' experiences of leisure-based art-making, and its contribution to psychological well-being. Method: This study interviewed six women (>60 years old) with lengthy experience of caring for a relative with dementia. All engaged regularly in art-making. Findings were inferred through Interpretative Phenomenological Analysis. Results: Participation in art-making promoted positive identity, and resilience for care-giving. It offered temporary respite from caregiving demands, helping participants maintain contact with the richness of the external world, and freedom from confinement. Artmaking facilitated meaningful connections with others, including the person with dementia, and enabled positive feedback. Participants whose loved ones had recently died or moved to residential care, processed, in oblique, possibly symbolic ways, the end of their intense involvement in care-giving. Conclusions: The findings suggest that meaningful creative leisure occupations may help to protect the psychological well-being of caregivers, promoting resilience.
Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life. These findings emphasise the importance of support for family members of autistic adults, whether through external services to support their relative or individual mental health support for the carer.
Background: Providing long‐term care to an adult relative with intellectual disability can impact negatively on caregivers’ health and well‐being. Methods: Data were collected via online and postal questionnaires on 110 family carers’ physical and psychological health, family stress and perceived positive gains from caring. Psychological adaptation and carers’ satisfaction with available support were also examined. Results: Study participants reported more health problems than general populations. Higher support needs of care recipients were associated with increased family stress. Carers being female were associated with lower family stress. Older age and better socio‐economic position were associated with better psychological outcomes. Other associations were consistent with psychological adaption and perceived helpfulness of support buffering negative outcomes and facilitating positive gains from caring. Conclusions: Family carers of adults with intellectual disability appear to experience poorer health outcome than population norms. Adaption to the caregiving role may buffer negative outcomes. Further large scale, population‐based, longitudinal research is needed.
Context:Thousands of family members worldwide are annually involved in assisted dying. Family participation in assisted dying has rarely been investigated and families' needs typically are not considered in assisted dying legislation and clinical guidelines. Objectives: To explore family caregivers' reflections on experiences of assisted suicide in Switzerland. Methods: A cross-sectional qualitative interview study conducted in the Italian- and French-speaking regions of Switzerland. Interpretation and analysis were performed using qualitative content analysis. Results: Twenty-eight close relatives and family carers of 18 patients who died by assisted suicide in Switzerland were interviewed. Family members perceived their involvement in assisted suicide as characterized by five phases; 1) contemplation, 2) gaining acceptance, 3) gaining permission, 4) organization, and 5) aftermath. Families can participate in these phases at diverse levels and with varying degrees of involvement. Important triggers for families and patients for transition between phases include patients' experiences of their life-threatening illnesses and related treatments, their increasing awareness of approaching death, and family member recognition of their loved one's unbearable suffering. Participating in assisted suicide created further demanding tasks for families in addition to their role of caregivers. Conclusion: Families appeared to be involved in the preparation of assisted suicide along with patients, irrespective of their personal values regarding assisted dying. Support for family members is essential if they are involved in tasks preparatory to assisted suicide. Clinical guidelines and policies concerning assisted dying should acknowledge and address family needs.
Eating disorders (ED) has the highest mortality rate of psychiatric disorders and a high incidence of comorbidity. Because of the average age of onset, care typically befalls family members. However, despite the severity of the disorder and the burden placed on the family, research into the caregiving experience is still developing. Studies have shown caregivers of individuals with ED to experience high levels of distress, burden and expressed emotion. Recent theoretical models have underscored the importance of caregivers' responses as a maintenance factor for the ED, and family therapy has proved efficacious. However, the literature pertaining to the experience of family members living with or caring for an individual with an ED has not been systematically reviewed. This review aimed to synthesize qualitative studies relating to the caring experience and its impact, thereby gaining an understanding from the perspective of the individuals themselves. Relevant search terms were utilized to systematically search key databases. Twenty studies, with a total sample of 239 participants, met the inclusion criteria. Nine core themes emerged from the synthesis, forming the basis of an explanatory theory. The ED was found to have a pervasive impact upon family members, mediated by a number of factors. Cognitive appraisals affected the caregiving experience and responses to the individual. The experience of caregiving was continually reappraised leading to a process of adaptation. The majority of studies identified unmet carer needs. The implications of the findings are discussed with reference to existing theoretical models and in terms of clinical practice. Copyright © 2015 John Wiley & Sons, Ltd. Key Practitioner Messages Carers experience a significant amount of guilt and distress once they have found out about their loved one's eating disorder., Across the studies, there were many themes of unmet need for carers., Siblings have often been overlooked by both clinicians and researchers., Interventions for people with eating disorders should also acknowledge carers and close family members.
Objectives: To explore the experiences of caregivers of terminally ill patients with delirium, to determine the potential role of caregivers in the management of delirium at the end of life, to identify the support required to improve caregiver experience and to help the caregiver support the patient. Methods: Four electronic databases were searched-PsychInfo, Medline, Cinahl and Scopus from January 2000 to July 2015 using the terms 'delirium', 'terminal restlessness' or 'agitated restlessness' combined with 'carer' or 'caregiver' or 'family' or 'families'. Thirty-three papers met the inclusion criteria and remained in the final review. Results: Papers focused on (i) caregiver experience-distress, deteriorating relationships, balancing the need to relieve suffering with desire to communicate and helplessness versus control; (ii) the caregiver role-detection and prevention of delirium, symptom monitoring and acting as a patient advocate; and (iii) caregiver support-information needs, advice on how to respond to the patient, interventions to improve caregiver outcomes and interventions delivered by caregivers to improve patient outcomes. Conclusion: High levels of distress are experienced by caregivers of patients with delirium. Distress is heightened because of the potential irreversibility of delirium in palliative care settings and uncertainty around whether the caregiver-patient relationship can be re-established before death. Caregivers can contribute to the management of patient delirium. Additional intervention studies with informational, emotional and behavioural components are required to improve support for caregivers and to help the caregiver support the patient. Reducing caregiver distress should be a goal of any future intervention.
The family caregivers of people with mental illness may internalize the public stereotypes into the affiliate stigma (i.e., the self-stigma of family members). This study aimed to compare the affiliate stigma across schizophrenia, bipolar disorder, and major depressive disorder, and to investigate potential factors associated with affiliate stigma. Each caregiver of family members with schizophrenia (n = 215), bipolar disorder (n = 85), and major depressive disorder (n = 159) completed the Affiliate Stigma Scale, Rosenberg Self-Esteem Scale, Caregiver Burden Inventory, Taiwanese Depression Questionnaire, and Beck Anxiety Inventory. After controlling for potential confounders, the hierarchical regression models showed that caregivers of a family member with schizophrenia had a higher level of affiliate stigma than those of bipolar disorder (β = -0.109; p < 0.05) and major depressive disorder (β = -0.230; p < 0.001). Self-esteem, developmental burden, and emotional burden were significant factors for affiliate stigma. The affiliate stigma of caregivers is associated with their self-esteem, caregiver burden, and by the diagnosis.
Background: In the Scandinavian countries and elsewhere, family care is important as a complement for older people in the professional care system. Better understanding of this role could lead to better cooperation between professionals and family carers and better use of family carers as a resource in care for older people. Aim: The aim of this study was to explore experiences of the role of family carers of older people in need of services and therefore to increase our understanding of this role. Method: The study was designed as a qualitative interview study. In 2014 and 2015, we conducted semistructured interviews with a varied sample of 16 family carers of older people in both urban and rural locations in Norway. Interviews were transcribed and analysed thematically. Findings: The way the caregiving role was enacted varied greatly between the family carers in this study, but they all conveyed mixed feelings regarding their role. They saw caring for their relative both as a duty and a strain, as well as a choice and a meaningful task. One reason for their engagement was perceived deficiencies in professional care services. Family carers thus felt they made a difference to the older person's well‐being and health, and more so if this role was acknowledged by professional caregivers. Conclusions: This study suggests that in spite of or perhaps even because of feelings of obligation and strain, family care is experienced as highly meaningful. However, it seems important that family carers receive explicit appreciation from professional health or care staff.
This study examines the economic and psychological costs of care for family carers of people with dementia in Ireland. The analysis is based on an opportunistic survey of 98 carers of people with dementia. The article presents new findings on Irish carers' own perceptions of optimal care provision and the value of the care provided in monetary terms. Family carers in the survey provide an average of just under 12 hours of specified care each day to people with dementia. Many carers refer to the constant nature of care, with very high figures recorded for surveillance and supervision of the person with dementia. Irish caregivers spend considerably longer than they would wish caring for their relatives with dementia, allowing their mental health to suffer in the process. Carers would also like to be paid for the work that they do. Current arrangements for monetary compensation are, however, selective and therefore inadequate to meet the needs of most carers.
Objectives: Using data from a national sample of informal caregivers to older adults, we identify predictors of lack of choice and the consequences of lack of choice in taking on the caregiving role.
Methods: A national telephone survey with 1397 caregivers was carried out to assess whether respondents had a choice in taking on the caregiving role, their demographic characteristics, the nature and duration of their caregiving experience, and its impact on their physical and psychological well-being. We compare caregivers who felt they had no choice in taking on the caregiving role to those who did.
Results: In total, 44% of caregivers reported a lack of choice in taking on the caregiving role. Highly educated, older caregivers caring for a younger care recipient with emotional or behavioral problems were most likely to report that they had no choice in taking on the caregiving role. Lack of choice is associated with higher levels of emotional stress, physical strain, and negative health impacts, after controlling for multiple confounds including level of care provided, relationship type, primary health condition of the care recipient, and demographic characteristics.
Conclusion: Lack of choice is an independent risk factor for the negative effects of caregiving, and clinicians should be vigilant to lack of choice as a marker of caregiver distress.
Despite evidence of negative psychological sequelae and unmet needs, there are few evaluated interventions for informal caregivers in cancer and palliative care. The aim of this article is to debate the strengths and limitations of randomized controlled trials (RCTs) and other designs that can be used to evaluate the effectiveness of these interventions. Psycho-educational interventions are used as example for this debate article, as a number of studies of various designs evaluating this type of intervention have been published. Systematic searching in Medline and the bibliography of a relevant systematic review identified five RCTs, one pre-test/post-test study with a control group and six one-group pre-test/post-test studies of psycho-educational interventions for caregivers. The methodological strengths and weaknesses were assessed. RCTs are seen as the gold standard, but can have important limitations in the context of carer intervention research, including biased recruitment and low generalizability, problems with blinding and attrition. Pre-test/post-test studies with a control group may be more feasible and more generalizable. Their crucial limitation is selection bias. Before–after studies are compromised by additional specific biases and therefore are the weakest of all discussed designs. After analysing the strengths and weaknesses of the mentioned study designs, this paper presents strategies to address the limitations of RCTs evaluating psycho-educational interventions for carers in cancer or palliative care.
Objectives: To evaluate the impact of a combination of caregiver support group and memory training/music therapy in dementia patients on behavioural and psychological symptoms (BPSD) and caregiver burden compared to a control group.
Method: Eighteen patient-carer-dyads in the treatment group and 18 patient-carer-dyads as controls were studied in the setting of a memory clinic of a psychiatric university hospital over a period of 2 years. Controls were matched for age, gender, diagnosis, dementia severity, living arrangement and medication. The interventions were conducted once per week for 1 hour run by a clinical psychogeriatric team. Outcome measures were patients' cognitive and functional status as well as BPSD and caregivers subjective burden and depression measured by validated scales. Data were obtained 6, 12 and 24 months after baseline.
Results: There were no significant differences between the intervention and control group neither after 6, 12 nor after 24 months treatment.
Conclusions: The lack of a positive impact in alleviating caregiver burden or BPSD after intensive psychological interventions may result from extensive care in the routine clinical management including individual counselling for patients and families. The effect of ‘treatment as usual’ needs to be taken into account when comparing an intervention and control group, as well as the dosage of the intervention. Copyright © 2004 John Wiley & Sons, Ltd.
"Together for mental health" is our ambitious strategy aiming to improve the mental health of the people of Wales and setting out our vision for 21st century mental health services. It is our first mental health strategy to cover all ages and centres on the 6 high level outcomes set out below:
a. The mental health and well-being of the whole population is improved.
b. The impact of mental health problems and/or mental illness on individuals of all ages, their families and carers, communities and the economy more widely, is better recognised and reduced.
c. Inequalities, stigma and discrimination suffered by people experiencing mental health problems and mental illness are reduced.
d. Individuals have a better experience of the support and treatment they receive and have an increased feeling of input and control over related decisions.
e. Access to, and the quality of preventative measures, early intervention and treatment services are improved and more people recover as a result.
f. The values, attitudes and skills of those treating or supporting individuals of all ages with mental health problems or mental illness are improved.
This is the second annual report on the implementation of the Welsh Government mental health strategy.
This paper explores the social support networks available to the informal carers of people living with motor neurone disease (MND). An ethnographic case study was undertaken using ecomapping, observation and conversational interviews to collect data from 18 primary carers of people living with MND. Interviews took place in participants’ homes in metropolitan, regional and rural locations. Participants discussed the content of their support network and drew lines between individuals to indicate the type and strength of relationship. Changes to the network were depicted on ecomaps during subsequent interviews. While health policy-makers assume that healthy social capital exists in Australian communities and that social cohesion will ensure active and available support networks in times of illness or disability, data from this exploratory study indicated that this was not consistently the case. Support networks varied in size and composition; however, age was identified as a discriminator of the availability and consistency of support. People in older age groups identified more diverse but consistent support systems while people in younger age groups reported more fluctuations in the strength of relationships and declines in support as caregiving became more demanding. Individual assessment of support networks at regular intervals in the caregiving trajectory is vital for all carers. However carers in younger age groups may need specific support to manage the psychological crises that occur and more access to paid care. Older carers may need consistent support to handle more of the instrumental aspects of care and assistance to mobilise their support networks. Community workers should be alert to the possible need for crisis intervention when tensions in relationships threaten carers’ ability to provide effective care.
Heart failure has a comparable prognosis to many cancers and accounts for approximately 4% of deaths in the UK. Despite its poor prognosis, few patients have access to specialist palliative care services. The National Institute for Health and Clinical Excellence (NICE) acknowledges that the palliative care needs of patients with heart failure and their informal carers are not currently being met. Its recently published guidance recommends the development of an effective multidisciplinary service model for such patients.
This paper reports on a research study which explored the worries and problems of young carers in Edinburgh. Sixty-one young carers took part in the study, conducted between April and June 2002. Findings indicate that young carers identify significant worries and problems in relation to their well-being, and that these come over and above any 'normal' adolescent difficulties. It is suggested that these findings may have important implications for young carers' mental health, now and in the future, and contain important lessons for child and family social work in general.
Objective: The Hospital Anxiety and Depression Scale (HADS) is often used to screen for cancer caregivers' anxiety and depression, despite few studies examining the tool's psychometric performance within this population. The purpose of this article is to use Rasch analysis to assess the psychometric properties of the HADS in a sample of cancer caregivers.
Methods: HADS was administered to 541 caregivers of a population-based sample of patients diagnosed with one of the eight most incident cancers in Australia. Rasch analysis was conducted using RUMM2020.
Results: More than two-thirds of caregivers were women and most participants were married (95.9%) and caring for their spouse/partner with cancer (89.8%). The HADS-Anxiety (HADS-A) subscale showed good fit to the model, with appropriate internal consistency after removal of item 11. There were no disordered thresholds and no differential item functioning (DIF) for sex or age. To achieve satisfactory model fit for the HADS-Depression (HADS-D) subscale item 8 was removed due to DIF for sex and item 14 was rescored to resolve disordered thresholds. Analyses supported the unidimensionality of the individual subscales; however, there was no support for the combination of subscales to form a HADS-Total.
Conclusions: The results of Rasch analysis support the use of a modified version of the HADS-A and HADS-D among cancer caregivers. Further research is needed to confirm these findings and identify revised clinical cut-points. Findings reinforce the need for clinicians and researchers to formally test the psychometric properties of the instruments that they intend to use with different samples. Copyright © 2010 John Wiley & Sons, Ltd.
Objectives: Positive aspects of the caregiving experience may buffer caregivers from the many negative psychological and physical consequences of caregiving. Understanding what factors relate to the recognition of positive aspects of caregiving is important for the enhancement of caregiver well-being. Self-efficacy is a potentially modifiable psychological construct that has been associated with positive thinking, improved control of negative affect, and enhanced motivation.
Methods: This study examined the relationship between positive aspects of caregiving and self-efficacy among 57 family members caring for a loved one with Alzheimer's disease. Participant data was gathered through individual interviews conducted as a part of a larger randomized controlled trial of a caregiver intervention.
Results: We found that self-efficacy accounted for a significant percentage of the variance in positive aspects of caregiving after controlling for other factors commonly associated with positive aspects of caregiving including caregiver demographics, care recipient neuropsychiatric symptoms, and caregiver depression.
Conclusions: Our results suggest that high self-efficacy relates to caregivers’ perception of positive aspects of the caregiving experience.
Background: Patients with severe chronic obstructive pulmonary disease (COPD) experience substantial symptom burden, psychological and social morbidity. The experience of this illness has an impact beyond the patient.
Objective: This study seeks to understand the experiences and needs of family carers of people with severe COPD.
Design: Semistructured interviews were held with current and bereaved carers of people with severe COPD. Several areas of content were targeted in the interviews, including the experience of caring for someone with COPD, views of treatment and prognosis, information and communication needs, and the understanding of palliative care. Data were analyzed thematically.
Results: The carers' and bereaved carers' experiences and needs around COPD are best understood as a dynamic of change, recognition, and adaptation. Carers faced many changes as the patients' general condition deteriorated. These were changes in the nature of caring tasks, in their relationships, and their own expectations. Carers usually recognized change had happened and sought to adapt through new approaches, new equipment, a new stance of thinking, and in most cases, continued caring. Within this theme of change, recognition, and adaptation were a series of subthemes: (1) the impact of caring, (2) recognizing the role of the carer, and (3) the needs of the carer including their needs from palliative care services.
Conclusion: The impact of caring borne by family carers is substantial and life changing. Health professionals may assist carers in their role through acknowledgement, facilitating recognition of the changes that have occurred (and their implications), and enabling creative adaptive responses for carers. Such assistance is likely to enhance the ability of carers to continue in this demanding role.
Background: Family caregivers of patients with poor prognosis upper gastrointestinal (GI) cancers are at high risk of experiencing psychological distress and carer burden. The early postoperative period is a time of high patient care needs and transition of care, with carers new to the caring role. This study aimed to explore the experiences of family caregivers of people diagnosed with upper GI cancer after surgical intervention to (1) identify their unmet supportive care needs and (2) investigate how family caregivers perceive their role during this time.
Methods: Family caregivers of newly diagnosed postsurgical upper GI cancer patients were recruited. Semi-structured telephone interviews were conducted at 3 weeks and 3 months post-surgery. Analysis involved a constant comparative approach. Sampling was discontinued when information redundancy was achieved. Fifteen family caregivers participated in the first interview and eight agreed to a second interview.
Results: Family caregivers reported significant information and support needs. Family caregiver distress was exacerbated by a lack of patient care knowledge. Access to support was limited by caregivers’ lack of understanding of the health system. Family caregivers view their role as part of their family responsibility.
Conclusions: This study provides new insight into the supportive care needs of family caregivers of upper GI cancer patients and the impact of unmet need on the emotional well-being of family caregivers. These results will inform future supportive care service development and intervention research aimed at reducing unmet supportive care needs and psychological distress of family caregivers of patients with poor prognosis upper GI cancer
Background This study examines the effects and associated factors of respite care, which was legislated as a community service for adults with an intellectual disability (ID) in Taiwan in 1997.
Method A total of 116 family carers who live with an adult with ID and have utilised the respite care program were surveyed using standardised measures.
Results The results suggest that the most notable effects of respite care include improvement in the carers' social support and life satisfaction, and relief of psychological stress and overall burden of care. The factors associated with these effects include the way the participants have used the respite care and the users' individual characteristics.
Conclusions How families used the respite care, whether the carers practised a religion, and where the families resided, were the most significant factors in determining the effectiveness of the respite. Suggestions are made for making access to information about the program more widely available, and for extending the availability and duration of the service.
Duchenne/Becker muscular dystrophy (DBMD) is a disorder of progressive muscle weakness that causes an increasing need for assistance with activities of daily living. Our objective was to assess the psychosocial health and contributing factors among female caregivers in families with DBMD. We conducted a survey of adult women among families with DBMD in the United States (US) from June 2006 through January 2007, collecting data related to the care recipient, perception of caregiving demands, personal factors, and socio-ecologic factors. Life satisfaction, stress, and distress were assessed as outcomes. Existing validated instruments were used when available. We received responses from 1238 women who were caring for someone with DBMD, 24.2% of whom were caring for two or more people with DBMD. Caregivers were more likely to be married/cohabitating than women in the general US population, and a high level of resiliency was reported by 89.3% of caregivers. However, the rate of serious psychological distress was significantly higher among caregivers than among the general population. Likewise, 46.4% reported a high level of stress, and only 61.7% reported that they were satisfied with their life. A high level of caregiving demands based on the Zarit Burden Interview (ZBI) was reported by 50.4% of caregivers. The post-ambulatory phase of DBMD was associated with decreased social support and increased ZBI scores. In multivariate logistic regression modelling, life satisfaction was dependent on high social support, high resiliency, high income, and form of DBMD. Distress and high stress were predicted by low resiliency, low social support, and low income. Employment outside of the home was also a predictor of high stress. Interventions focused on resiliency and social support are likely to improve the quality of life of DBMD caregivers, and perhaps caregivers of children with other disabilities or special health care needs as well.
OBJECTIVE: No instrument has been developed and validated across cultures to measure the degree of support provided by informal carers to people with schizophrenia. We aimed to develop such a measure.
METHOD: The Maristán Scale of Informal Care was developed directly from the views of patients with schizophrenia in six countries. Face-to-face interviews were carried out with participants and 103 were repeated after 30 days. Principal Axis Factoring followed by Promax rotation evaluated the structure of the scale. Horn's parallel combined with bootstrapping determined the number of factors. Cronbach's alpha estimated the scale's internal consistency and intra-class correlation its test-retest reliability.
RESULTS: A total of 164 interviews were undertaken, 103 with re-test. The Horn's Parallel Analysis and the analysis of the Promax rotation revealed one factor. Cronbach's alpha was 0.89. Intra-class correlation coefficient was 0.56 (95% CI 0.42-0.68) and this increased to 0.64 (95% CI 0.51-0.75) after removing two outlying values. Patients from Argentina recorded the lowest scores (poor informal support/care).
CONCLUSION: The Maristán Scale of Informal Care is a reliable instrument to assess the degree of support provided by informal carers to people with schizophrenia across cultures. A confirmatory factor analysis is needed to evaluate the stability of its factor structure. © 2013 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.
Purpose. To describe the level of caregiver strain and factors associated with caregiver self-efficacy and quality of life (QoL) in a community cohort with multiple sclerosis (MS).
Method. A cross-sectional survey of 62 informal caregivers and 101 participants with confirmed MS and quantified physical and cognitive disability recruited from a tertiary hospital MS database. Structured interviews conducted at home using standardized assessments to measure: (i) Caregiver strain and subjective burden of care; (ii) participant with MS and caregiver QoL and self-efficacy; and (iii) participant with MS level of depression, anxiety and stress.
Results. The mean caregiver age was 54 years (range 37 – 62). The mean caregiver strain score was 5.63 (SD 3.63). Twenty-six of 62 (42%) caregivers reported strain for items such as emotional adjustments, demands on time, change in personal plan and disrupted sleep. Caregiver burden was higher in those caring for the more severely affected persons with MS, especially those with higher depression, anxiety and stress levels. The caregiver strain correlated with a lower QoL in both the person with MS and their caregiver, but not with their self-efficacy scores.
Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS.
OBJECTIVE: Informal caregivers of people with advanced cancer experience many negative impacts as a result of their role. There is a lack of suitable measures specifically designed to assess their experience. This study aimed to develop a new measure to assess self-efficacy in caregivers of people with advanced cancer.
METHODS: The development and testing of the new measure consisted of four separate, sequential phases: generation of issues, development of issues into items, pilot testing and field testing. In the generation of issues, 17 caregivers were interviewed to generate data. These data were analysed to generate codes, which were then systematically developed into items to construct the instrument. The instrument was pilot tested with 14 health professionals and five caregivers. It was then administered to a large sample for field testing to establish the psychometric properties, with established measures including the Brief Cope and the Family Appraisals for Caregiving Questionnaire for Palliative Care.
RESULTS: Ninety-four caregivers completed the questionnaire booklet to establish the factor structure, reliability and validity. The factor analysis resulted in a 21-item, four-factor instrument, with the subscales being termed Resilience, Self-Maintenance, Emotional Connectivity and Instrumental Caregiving. The test-retest reliability and internal consistency were both excellent, ranging from 0.73 to 0.85 and 0.81 to 0.94, respectively. Six convergent and divergent hypotheses were made, and five were supported.
CONCLUSIONS: This study has developed a new instrument to assess self-efficacy in caregivers of people with advanced cancer. The result is a four-factor, 21-item instrument with demonstrated reliability and validity. Copyright © 2012 John Wiley & Sons, Ltd.
Background: Increased life expectancy has resulted in a greater provision of informal care within the community for patients with chronic physical health conditions. Informal carers are at greater risk of poor mental health, with one in three informal carers of stroke survivors experiencing depression. However, currently no psychological treatments tailored to the unique needs of depressed informal carers of stroke survivors exist. Furthermore, informal carers of stroke survivors experience a number of barriers to attending traditional face-to-face psychological services, such as lack of time and the demands of the caring role. The increased flexibility associated with supported cognitive behavioral therapy self-help (CBTsh), such as the ability for support to be provided by telephone, email, or face-to-face, alongside shorter support sessions, may help overcome such barriers to access. CBTsh, tailored to depressed informal carers of stroke survivors may represent an effective and acceptable solution.
Methods/Design: This study is a Phase II (feasibility) randomized controlled trial (RCT) following guidance in the MRC Complex Interventions Research Methods Framework. We will randomize a sample of depressed informal carers of stroke survivors to receive CBT self-help supported by mental health paraprofessionals, or treatment-as-usual. Consistent with the objectives of assessing the feasibility of trial design and procedures for a potential larger scale trial we will measure the following outcomes: a) feasibility of patient recruitment (recruitment and refusal rates); (b) feasibility and acceptability of data collection procedures; (c) levels of attrition; (d) likely intervention effect size; (e) variability in number, length and frequency of support sessions estimated to bring about recovery; and (f) acceptability of the intervention. Additionally, we will collect data on the diagnosis of depression, symptoms of depression and anxiety, functional impairment, carer burden, quality of life, and stroke survivor mobility skill, self-care and functional ability, measured at four and six months post-randomization.
Discussion: This study will provide important information for the feasibility and design of a Phase III (effectiveness) trial in the future. If the intervention is identified to be feasible, effective, and acceptable, a written CBTsh intervention for informal carers of stroke survivors, supported by mental health paraprofessionals, could represent a cost-effective model of care.
Trial registration: Current Controlled Trials ISRCTN63590486.
Little is known about the factors that mediate the caregiving experience of informal carers at home, which could inform about ways of supporting them in their caregiving role. Our objective was to investigate the caring experience of carers for patients with an advanced progressive illness (chronic obstructive pulmonary disease [COPD], heart failure, cancer, or motor neuron diseases [MND]), who suffer from breathlessness.
A purposive sample of 15 carers was selected. They were recruited via the patients they cared for (who suffered from COPD, cancer, MND, or heart failure) from the hospital and the community. Data were collected through semistructured, in-depth interviews. All were tape-recorded and transcribed verbatim. The analysis used a Grounded Theory approach and NVivo software facilitated the management and analysis of the data.
Several key issues affected caring in a positive or a negative way. The threats to caring were uncertainty, carers' own health problems, an imploded world, negative reactions from outside, person loss, and acute exacerbations. Resources that carers drew on were acceptance, self-care, availability of support, feeling that caring is a shared responsibility with the patient, and “getting on with” caring in case of emergencies. Breathlessness was particularly challenging, and carers did not have any strategies to relieve the symptom. They were ill prepared for acute exacerbations.
Carers need to be included in opportunities for support provision in advanced illness. Negotiated involvement of a health professional could buffer the heavy responsibilities related to home care. They could provide problem-solving skills and build on the resources that carers draw on in response to what they experience as most threatening to their caring role.
The Oxford Friends and Family Empowerment (OFAFE) service is a carer support service that originated in a collaboration between the Oxfordshire Complex Needs Service and the national mental health charity Rethink. OFAFE provides support and education for adults supporting an individual with a personality disorder. This paper describes the background and operation of the OFAFE service, along with the early stages of the development of a similar service for young carers, the Young Friends and Family Empowerment (YFAFE) service.
Purpose: Our study aimed to investigate the relationship between unmet supportive care needs and carer burden and happiness, in head and neck cancer (HNC).
Methods: Two hundred eighty-five HNC informal carers were sent a postal questionnaire between January and June 2014, which included the supportive care needs survey for partners and caregivers of cancer survivors (SCNS-P&C) and the CarerQol, which assesses burden and happiness. Multiple regression analysis was conducted to examine the association of (i) carer characteristics, (ii) carer situation, and (iii) unmet supportive care needs, with carer burden and happiness
Results: One hundred ninety-seven carers completed the questionnaire (response rate = 69 %), 180 of whom were included in the analysis. The majority were female (76 %), not in paid employment (68 %) and caring for their spouse (67 %). On average, carers reported relatively low levels of burden and relatively high levels of happiness. Carer factors explained 42 % of variance in levels of burden and 24 % of variance in levels of happiness. Healthcare service needs were associated with carer burden (β = .28, p = .04), while psychological needs (β = −.38, p = .028), health care service needs (β = −.30, p = .049), information needs (β = .29, p = .028), carer comorbidity (β = −.18, p = .030), and gender (β = −.16, p = .045) were associated with happiness.
Conclusions: Our results indicate that different aspects of carer characteristics and unmet needs are associated with carer burden and happiness. Efforts directed at reducing unmet healthcare service needs in particular are merited given their associations with both aspects of carer quality of life.
Background: Carers of people with eating disorders experience high levels of distress due to the difficulties in their care giving role and their perceived lack of resources to help their relative. This paper describes an intervention where some of the skills used by specialist nurses and other staff from an eating disorder intensive care setting are taught to carers to improve their sense of competency and alleviate their distress. The aim of this study was to examine the feasibility and acceptability of “the Maudsley eating disorder collaborative care skills workshops” programme among care givers and whether the difficulties and distress involved in caring for a person with an eating disorder were reduced.
Methods: Thirty-five carers from 30 families were invited to participate in this programme, which consisted of a total of six workshops, delivered in 2-h sessions over 3 months. Assessments were undertaken at baseline (T0), at the end of the workshops (T1) and 3 months later (T2).
Results: The level of carer distress (GHQ) fell significantly after the intervention. The level of general care giving burden (ECI) also reduced as did the specific difficulties caused by eating disorder symptoms (EDSIS). These changes were maintained over time (T2).
Conclusions: The transfer of specialist skills within the programme was highly valued by the carers and lessened their stress and care giving difficulties.
Informal carers have a pivotal role in caring for patients who have had a stroke. Research has shown that informal carers have unmet information, psychological and social needs. There is a lack of research about how informal carers in Northern Ireland manage the role of caring for a patient who has experienced stroke, and what kind of support they need and receive. This literature review explores the experiences of informal carers providing stroke care in the home. The issues highlighted in the article are relevant worldwide, because the incidence of stroke is increasing in developed and developing countries.
Background: There is evidence that late life depression is associated with high levels of unmet needs. Only a minority of the depressed patients appears to be adequately treated.
Methods: Ninety-nine older patients (58–92 years), 96 informal carers and 85 health-care professionals were recruited from six outpatient facilities for old age psychiatry in the Netherlands and interviewed to identify met and unmet needs, using the Camberwell Assessment of Needs for the Elderly (CANE). The severity of depression was measured with the Montgomery Åsberg Depression Rating Scale (MADRS).
Results: On average patients scored more unmet needs than staff and carers. On item level, patients and staff showed the highest agreement in the psychological needs category. Patient and carers showed the highest agreement on physical health needs. Logistic regression showed that severe depression is a significant predictor of low concordance between stakeholders on a substantial number of CANE items.
Limitations: Kappa coefficients were computed to determine agreement between parties involved. However, Kappa coefficients should be interpreted with caution, especially when obvious disparity in unmet needs scores between groups of interest can be observed.
Conclusion: Home dwelling older patients with major depressive disorder, their practitioners and their informal carers have different perceptions of the older patients unmet needs.Practitioners should be aware of the negative impact of depression severity on reaching agreement regarding unmet needs and its possible consequences for mutual goal setting and compliance.
BACKGROUND: Despite considerable investment in research priority setting within diverse fields of healthcare, little is known about the extent to which different stakeholder groups share research priorities. Conflicting priorities may jeopardize stakeholder engagement in research.
OBJECTIVE: To identify the research priorities of different stakeholder groups within mental health care and examine the extent and nature of agreement between them.
DESIGN: Using a Delphi technique, we conducted parallel consultation processes within four different stakeholder groups. Each group process consisted of three rounds.
SETTING AND PARTICIPANTS: The study was carried out within a mental health and learning disabilities trust in southern England. Participants were recruited from the following groups: mental health service users (34), informal carers (26), mental health practitioners (35) and service managers (23).
FINDINGS: There were striking differences between the four groups in respect of their ability and willingness to make priority decisions. These differences notwithstanding, there was considerable overlap in respect of their research interests. All groups identified and attached high importance to issues relating to the promotion of independence, self-esteem and recovery. The quality of in-patient care, the place of psychological therapies and the relationship between physical and mental health also emerged across the board.
CONCLUSIONS: The confluence of four different stakeholder groups around a number of clear themes is highly encouraging, providing a framework within which to construct a research agenda and suggesting that mental health research can be built on solid partnerships.
The pathophysiological consequences of caregiving have not been fully elucidated. We evaluated how caregiving, stress, and caregiver strain were associated with shorter relative telomere length (RTL), a marker of cellular aging. Caregivers (n = 240) and some noncaregivers (n = 98) in the 2008–2010 Survey of the Health of Wisconsin, comprising a representative sample of Wisconsin adults aged 21–74 years, reported their sociodemographic, health, and psychological characteristics. RTL was assayed from blood or saliva samples. Median T and S values were used to determine the telomere-to-single copy gene ratio (T/S) for each sample, and log(T/S) was used as the dependent variable in analyses. Multivariable generalized additive models showed that RTL did not differ between caregivers and noncaregivers (difference in log(T/S) = −0.03; P > 0.05), but moderate-to-high levels of stress versus low stress were associated with longer RTL (difference = 0.15; P = 0.04). Among caregivers, more hours per week of care, caring for a young person, and greater strain were associated with shorter RTL (P < 0.05). Caregivers with discordant levels of stress and strain (i.e., low perceived stress/high strain) compared with low stress/low strain had the shortest RTL (difference = −0.24; P = 0.02, Pinteraction = 0.13), corresponding to approximately 10–15 additional years of aging. Caregivers with these characteristics may be at increased risk for accelerated aging. Future work is necessary to better elucidate these relationships and develop interventions to improve the long-term health and well-being of caregivers.
Objective: To describe the experiences of illness and needs and use of services in two groups of patients with incurable cancer, one in a developed country and the other in a developing country.
Design: Scotland: longitudinal study with qualitative interviews. Kenya: cross sectional study with qualitative interviews.
Settings: Lothian region, Scotland, and Meru District, Kenya.
Participants: Scotland: 20 patients with inoperable lung cancer and their carers. Kenya: 24 patients with common advanced cancers and their main informal carers.
Main outcome measures: Descriptions of experiences, needs, and available services.
Results: 67 interviews were conducted in Scotland and 46 in Kenya. The emotional pain of facing death was the prime concern of Scottish patients and their carers, while physical pain and financial worries dominated the lives of Kenyan patients and their carers. In Scotland, free health and social services (including financial assistance) were available, but sometimes underused. In Kenya, analgesia, essential equipment, suitable food, and assistance in care were often inaccessible and unaffordable, resulting in considerable unmet physical needs. Kenyan patients thought that their psychological, social, and spiritual needs were met by their families, local community, and religious groups. Some Scottish patients thought that such non-physical needs went unmet.
Conclusions: In patients living in developed and developing countries there are differences not only in resources available for patients dying from cancer but also in their lived experience of illness. The expression of needs and how they are met in different cultural contexts can inform local assessment of needs and provide insights for initiatives in holistic cancer care.
Background: The ASCOT-Carer is a self-report instrument designed to measure social care-related quality of life (SCRQoL). This article presents the psychometric testing and validation of the ASCOT-Carer four response-level interview (INT4) in a sample of unpaid carers of adults who receive publicly funded social care services in England.
Methods: Unpaid carers were identified through a survey of users of publicly funded social care services in England. Three hundred and eighty-seven carers completed a face-to-face or telephone interview. Data on variables hypothesised to be related to SCRQoL (e.g. characteristics of the carer, cared-for person and care situation) and measures of carer experience, strain, health-related quality of life and overall QoL were collected. Relationships between these variables and overall SCRQoL score were evaluated through correlation, ANOVA and regression analysis to test the construct validity of the scale. Internal reliability was assessed using Cronbach’s alpha and feasibility by the number of missing responses.
Results: The construct validity was supported by statistically significant relationships between SCRQoL and scores on instruments of related constructs, as well as with characteristics of the carer and care recipient in univariate and multivariate analyses. A Cronbach’s alpha of 0.87 (seven items) indicates that the internal reliability of the instrument is satisfactory and a low number of missing responses (<1 %) indicates a high level of acceptance.
Conclusion: The results provide evidence to support the construct validity, factor structure, internal reliability and feasibility of the ASCOT-Carer INT4 as an instrument for measuring social care-related quality of life of unpaid carers who care for adults with a variety of long-term conditions, disability or problems related to old age.
Background: Most patients who have had a stroke are dependent on informal caregivers for activities of daily living. The TRACS trial investigated a training programme for caregivers (the London Stroke Carers Training Course, LSCTC) on physical and psychological outcomes, including cost-effectiveness, for patients and caregivers after a disabling stroke.
Methods: We undertook a pragmatic, multicentre, cluster randomised controlled trial with a parallel cost-effectiveness analysis. Stroke units were eligible if four of five criteria used to define a stroke unit were met, a substantial number of patients on the unit had a diagnosis of stroke, staff were able to deliver the LSCTC, and most patients were discharged to a permanent place of residence. Stroke units were randomly assigned to either LSCTC or usual care (control group), stratified by geographical region and quality of care, and using blocks of size 2. Patients with a diagnosis of stroke, likely to return home with residual disability and with a caregiver providing support were eligible. The primary outcome for patients was self-reported extended activities of daily living at 6 months, measured with the Nottingham Extended Activities of Daily Living (NEADL) scale. The primary outcome for caregivers was self-reported burden at 6 months, measured with the caregivers burden scale (CBS). We combined patient and caregiver costs with primary outcomes and quality-adjusted life-years (QALYs) to assess cost-effectiveness. This trial is registered with controlled-trials.com, number ISRCTN 49208824.
Findings: We assessed 49 stroke units for eligibility, of which 36 were randomly assigned to either the intervention group or the control group. Between Feb 27, 2008, and Feb 9, 2010, 928 patient and caregiver dyads were registered, of which 450 were in the intervention group, and 478 in the control group. Patients' self-reported extended activities of daily living did not differ between groups at 6 months (adjusted mean NEADL score 27·4 in the intervention group versus 27·6 in the control group, difference –0·2 points [95% CI –3·0 to 2·5], p value=0·866, ICC=0·027). The caregiver burden scale did not differ between groups either (adjusted mean CBS 45·5 in the intervention group versus 45·0 in the control group, difference 0·5 points [95% CI –1·7 to 2·7], p value=0·660, ICC=0·013). Patient and caregiver costs were similar in both groups (length of the initial stroke admission and associated costs were £13 127 for the intervention group and £12 471 for the control group; adjusted mean difference £1243 [95% CI –1533 to 4019]; p value=0·380). Probabilities of cost-effectiveness based on QALYs were low.
Interpretation: In a large scale, robust evaluation, results from this study have shown no differences between the LSCTC and usual care on any of the assessed outcomes. The immediate period after stroke might not be the ideal time to deliver structured caregiver training.
Family caregivers need adequate support from healthcare professionals to complete the demands associated with caregiving with minimal impact on their own health and well-being. An optimal balance of provision of care between family and support services has not been achieved; therefore, this literature review investigates how family caregivers endure and cope with the challenges of caring for an adult relative with cancer. This review considered the characteristics of caregivers and their functioning, the external and internal supports that help them cope, the ongoing challenges as they journey along the caregiving trajectory, the personal costs of caregiving, and how caregivers cope with supporting their family members through to the end of their journeys. The literature provides an abundance of research on the numerous challenges encountered by families living with cancer; however, little research has been conducted on the coping strategies used by family caregivers at specific stages along the illness trajectory that either optimize or hinder personal recovery. Even less information is available on interventions nurses can introduce to ease the caregiving burden. Improving nurses' understanding of the stressors and unmet needs associated with caregiving is fundamental to the development of effective family-focused clinical interventions.
OBJECTIVES: Carers of people with eating disorders (ED) have high levels of distress, but little is known about the contributing factors. The aim of this study was to examine predictors of carers' distress and caregiving appraisals using a model of caregiving adapted from the previous literature.
DESIGN: A cross-sectional design was used.
METHODS: A sample of 115 individuals currently caring for someone with an ED participated in the study. Carers completed self-report assessments of psychological distress (GHQ-12; Goldberg & Williams, 1988), experience of caregiving (Szmukler et al., 1996), illness representations (IPQ-SCV; Barrowclough, Lobban, Hatton, & Quinn, 2001) and caregiving needs (CaNAM; Haigh & Treasure, 2003). Simple and multiple hierarchical regressions were conducted.
RESULTS: Approximately 36% (39/109) of carers had scores on the GHQ which indicated mental health difficulties, with 17% (19/109) experiencing high psychological distress. A negative experience of caregiving was associated with carers' distress. The dependency of the individual with the ED and stigma associated with the illness were most highly predictive of carers' distress. Shorter illness duration, higher levels of needs (lower levels of support) and perceptions of high illness consequences contributed to greater negative caregiving appraisals. The belief that the illness was attributable to the sufferers' personality was related to fewer positive appraisals.
CONCLUSIONS: Adjusting to the impact of a family member experiencing an ED is problematic, as suggested by the relationship between shorter illness duration and greater negative appraisals of caregiving. Interventions to help reduce dependency and alleviate stigma may help to decrease carers' distress.
Objectives: Physical exercise has been associated with a range of positive outcomes including improvements in psychological well-being. The aim of the present study was to review current evidence on the effects of physical activity interventions for carers of people with dementia.
Methods: Systematic review. We searched electronic databases and key articles of studies that have evaluated the effectiveness of physical activity interventions in improving psychological well-being in carers of people with dementia. Relevant papers were scored according to established criteria set by the Cochrane Review Group. Selection criteria for studies were a randomized controlled trial (RCT) design, and comparing physical activity with a control group receiving no specific physical activity intervention. Two reviewers worked independently to select trials, extract data, and assess risk of bias.
Results: A total of four RCTs met the inclusion criteria. Studies evaluated home-based supervised physical activity of low to moderate intensity, which included either aerobic exercise, or endurance training. Pooled data showed that physical activity reduced subjective caregiver burden in carers, standardized mean difference −0.43; 95% confidence interval (CI) −0.81 to −0.04, in comparison to a control group of usual care.
Conclusions: There is evidence from two RCTs that physical activity reduces subjective caregiver burden for carers of people with dementia. Although statistically significant, the observed benefits should be interpreted with caution as the studies conducted so far have limitations. Further high-quality trials are needed for evaluating the effectiveness of physical activity in improving psychological well-being in carers of people with dementia. Copyright © 2014 John Wiley & Sons, Ltd.
The article discusses the difficulties experienced by young carers and how to develop and strengthen their caregiver skills and experience. It says that young carers are children, adolescents, and younger members of the family below the age of 25 who has become the primary caregiver of the family and takes adult responsibilities in managing the family due to parental absence. It says that due to their young age, most young carers experience psychological and physical stress in their lives, social isolation from their peers, and educational delays. However, many young carers also see positive outcomes of their role like heightened sense of self-worth, satisfaction from caregiving tasks, and belief that they are more mature.
Aims and objectives: To explore bereaved family carers' perceptions and experiences of a hospice at home service.
Background: The increasing demand for the development of home-based end-of-life services is not confined to the western world; such services are also emerging in resource-poor countries where palliative care services are developing with limited inpatient facilities. Despite this growing trend, studies show a variety of interrelated factors, with an emphasis on the availability of informal carers and their ability to cope, which can influence whether terminally ill patients actually remain at home. A hospice at home service was developed to meet patients' and families' needs by providing individually tailored resources.
Design: A qualitative study.
Methods: Data were collected by semi-structured, digitally recorded interviews from 20 family carers who had experienced the service. Interviews were transcribed verbatim and a thematic approach adopted for analysis.
Results: All participants reported a personal positive impact of the service. Family carers commented the service provided a valued presence, they felt in good hands and importantly it helped in supporting normal life.
Conclusions: The impact of an individualised, targeted, hospice at home service using dedicated, palliative care trained, staff, is perceived positively by family carers and importantly, supportive of those with additional caring or employment commitments.
Relevance to clinical practice: The emergence of hospice at home services has resulted in more options for patients and their families, when the increased amount of care a family member has to provide in these circumstances needs to be adequately supported, with the provision of a flexible service tailored to individual needs and delivered by appropriately trained staff.
Background: Case managers have been introduced in Dutch primary palliative care; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner and home care nurses. This study aims to describe support and investigate what characteristics of patients and the organizational setting are related to the number of contacts and to the number of times topics are discussed between the case manager and patients and/or informal carers.
Methods: Prospective study following cancer patients (n = 662) receiving support from a palliative care case manager in Dutch primary care, using registration forms filled out by the case manager after contact with the patient and/or informal carer. In backward linear regression, the association was studied between patient or organizational characteristics and the number of contacts and the number of times conversation topics were discussed.
Results: Organizational characteristics add more to explained variability in data than patient characteristics. Case managers provide support in a flexible manner with regard to the number, mode, persons present, and duration of contacts. Support covered all domains of palliative care, with most attention given to physical complaints, life expectancy and psychological aspects.
Conclusions: Support offered by the case managers is prompted by characteristics of the organization for which they work. This is contradictory to the idea of patient centered care highly valued in palliative care.
Objectives: People caring for family members who have dementia often experience considerable levels of anxiety and depression. However, relatively little is known about the awareness of carer distress among people with dementia. This study investigated whether or not people with dementia are aware of the level of distress experienced by their carers.
Method: Two groups of participants were studied, a dementia group and a control group of people with arthritis. Each group consisted of pairs of people, the person with dementia or arthritis and the family member who acted as their main carer; 40 pairs participated in total. For both groups, the carer's psychological health was rated by the carer themselves and by the care-recipient, using the Hospital Anxiety and Depression Scale. For the dementia group, memory functioning in the person with dementia was rated by the care-recipient themselves and by the carer, using the Memory Function Scale. The ratings made by the carer and care-recipient were compared to give an indication of the level of awareness in the care-recipient.
Results: People with dementia have a significant level of awareness of their carers' state of psychological health. Their awareness follows the same pattern as that shown by a control group of people with arthritis. The level of awareness of carer psychological health shown by the dementia group was not related to their level of awareness of their own memory difficulties.
Conclusion: The clinical implications of awareness of carer distress in people with dementia should be considered. Copyright © 2009 John Wiley & Sons, Ltd.
Background: Many caregivers with chronically ill relatives suffer from depression. However, the relationship of depression to other outcomes of chronic caregiving remains unclear. This study tested a hypothesized model which proposed that hours of care, stressful life events, social support, age and gender would predict caregivers' outcomes through perceived caregiver stress. Depression was expected to mediate the relationship between perceived stress and outcomes of chronic caregiving (physical function, self-esteem, and marital satisfaction).
Methods: The sample for this secondary data analysis consisted of 236 and 271 subjects from the Americans' Changing Lives, Wave 1, 1986, and Wave 2, 1989, data sets. Measures were constructed from the original study. Structural equation modeling was used to test the hypothesized model, and an exploratory structural modeling method, specification search, was used to develop a data-derived model. Cross-validation was used to verify the paths among variables.
Results: Hours of care, age, and gender predicted caregivers' outcomes directly or through perceived caregiver stress (p < .01). Depression mediated the relationship between perceived stress and psychological outcomes and explained 40% and 11% of the variance in self-esteem and marital satisfaction, respectively.
Conclusion: Depression predicted psychological outcomes. Whether depression predicts physical health outcomes needs to be further explored.
This paper intends to reflect on some of the predominant traits of caring for older vulnerable people in Portugal, where the most common care model is a mix of informal home-based provision and support from the public and private sectors. We shall address some issues concerning the risks and limits of informal caretaking of older dependent people based on a case study of a woman who has to fulfil multiple roles, pushing her to the limit of her ability to cope. Evidence indicates that solutions to the challenges of caring for an ageing population, especially those in a vulnerable condition, require a consideration of material, social, cultural, and psychological measures. On the basis of the nature of the links between these areas, the quality of the care provided and the consequences for the working family carers, we can define standards of caring solutions for older people and hence derive policies for preventive and optimized interventions. Our final aim is to emphasize the importance of palliative care settings to improve the quality of life and minimize the suffering of both older people and their carers.
Purpose of the Study: Research shows that parents benefit psychologically from generativity—giving and caring for the next generation—but older adults’ perceptions on giving support to their children are rarely if ever explored in these studies. The current study examines the association between the support that aging parents give to one of their middle-aged offspring, their perception of this support as rewarding or stressful, and their levels of depressive symptoms.
Design and Methods: The sample draws from The Family Exchanges Study and consisted of 337 older parents (mean age: 76) who were drawn from a larger study of middle-aged adults (i.e., target participants). Older parents reported tangible and nontangible forms of support given to the target middle-aged child and the extent to which they viewed providing such support as stressful and/or rewarding.
Results: We found significant interactions between tangible support and feelings of reward and between nontangible support and feelings of stress in explaining parental depressive symptoms. Parents who found giving support to be highly rewarding had lower levels of depressive symptoms when giving high amounts of tangible support. Conversely, parents who view giving support to be highly stressful had higher levels of depressive symptoms when they gave low amounts of nontangible support.
Implications: Findings suggest older parents’ perceptions of supporting their offspring may condition how generativity affects their mental health.
As the age of the general population increases, the number of elderly people who need care is increasing. It has been suggested that rural carers may be disadvantaged compared to urban carers, but it is not clear what affect geographic location has on carers. This paper presents a systematic review of the literature on urban–rural comparisons on various outcomes for informal carers who provide care for elderly people in the community. Of 150 articles that were reviewed, eight articles were included with three themes in the outcomes for carers: service use, health promotion behaviors and psychological health (such as carer stress, burden or depressive symptoms). Overall, there were few consistent or statistically significant differences between urban and rural carers. Many of the differences observed were explained by other factors, such as carer or care recipient characteristics. The literature search was limited to papers in the English language, involving quantitative methods and published in peer-reviewed journals. There were not enough studies found to examine other outcomes or to pool data across studies. There is too little evidence comparing urban and rural carers to inform clinicians and policy makers. More good-quality research is urgently needed.
Purpose: The aim of this study was to explore the views and experiences of the informal caregivers of repeat fallers with Parkinson's disease. Method: Individuals were invited to participate in this study if they were the informal caregiver of a person with Parkinson's disease (PD) who had experienced more than one fall in the previous 12 months. Participants were interviewed about their experience of managing falls using a semi-structured interview schedule. Interview data were transcribed and analysed using thematic analysis. Results: Fourteen caregivers (11 female) participated in the study. All were marital partners of a repeat faller with Parkinson's disease. The average age of the participants was 69.9 years (44 - 79). Their partners had had PD for an average of 16.7 years. Six major themes emerged from the analysis of the interview data, four directly related to falls management (the falls; consequences of the falls for the person with PD; caregivers' experiences of falls; consequences of falls for the caregiver). The majority of caregivers were frightened about their spouse falling. They used a number of methods of getting their spouse up from the floor but often injured themselves as a consequence. Caregivers highlighted the high level of care they provided and the social and psychological impact of the condition on them. They received limited help in looking after their spouse and little information about falls or about the disease in general. Conclusion: Caregivers in this study felt unprepared for their role and expressed a need for more support and advice, especially about managing falls.
Objective: Research into youth caregiving in families where a parent experiences a significant medical condition has been hampered by a lack of contextually sensitive measures of the nature and breadth of young caregiving experiences. This study examined the factor structure and measurement invariance of such a measure called the Young Carer of Parents Inventory (YCOPI; Pakenham et al., 2006) using confirmatory factor analysis across 3 groups of youth. The YCOPI has 2 parts: YCOPI-A with 5 factors assessing caregiving experiences that are applicable to all caregiving contexts; YCOPI-B with 4 factors that tap dimensions related to youth caregiving in the context of parent illness. Design: Two samples (ages 9–20 years) were recruited: a community sample of 2,429 youth from which 2 groups were derived (“healthy” family [HF], n = 1760; parental illness [PI], n = 446), and a sample of 130 youth of a parent with multiple sclerosis). Results: With some modification, the YCOPI-A demonstrated a replicable factor structure across 3 groups, and exhibited only partial measurement invariance across the HF and PI groups. The impact of assuming full measurement invariance on latent mean differences appeared small, supporting use of the measure in research and applied settings when estimated using latent factors and controlling for measurement invariance. PI youth reported significantly higher scores than did HF youth on all YCOPI-A subscales. The YCOPI-B requires some modifications, and further development work is recommended. Conclusion: The factor structure that emerged and the addition of new items constitutes the YCOPI-Revised. Findings support the use of the YCOPI-Revised in research and applied settings. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
Background: Case management has been applied in community aged care to meet frail older people’s holistic needs and promote cost-effectiveness. This systematic review aims to evaluate the effects of case management in community aged care on client and carer outcomes.
Methods: We searched Web of Science, Scopus, Medline, CINAHL (EBSCO) and PsycINFO (CSA) from inception to 2011 July. Inclusion criteria were: no restriction on date, English language, community-dwelling older people and/or carers, case management in community aged care, published in refereed journals, randomized control trials (RCTs) or comparative observational studies, examining client or carer outcomes. Quality of studies was assessed by using such indicators as quality control, randomization, comparability, follow-up rate, dropout, blinding assessors, and intention-to-treat analysis. Two reviewers independently screened potentially relevant studies, extracted information and assessed study quality. A narrative summary of findings were presented.
Results: Ten RCTs and five comparative observational studies were identified. One RCT was rated high quality. Client outcomes included mortality (7 studies), physical or cognitive functioning (6 studies), medical conditions (2 studies), behavioral problems (2 studies) , unmet service needs (3 studies), psychological health or well-being (7 studies) , and satisfaction with care (4 studies), while carer outcomes included stress or burden (6 studies), satisfaction with care (2 studies), psychological health or well-being (5 studies), and social consequences (such as social support and relationships with clients) (2 studies). Five of the seven studies reported that case management in community aged care interventions significantly improved psychological health or well-being in the intervention group, while all the three studies consistently reported fewer unmet service needs among the intervention participants. In contrast, available studies reported mixed results regarding client physical or cognitive functioning and carer stress or burden. There was also limited evidence indicating significant effects of the interventions on the other client and carer outcomes as described above.
Conclusions: Available evidence showed that case management in community aged care can improve client psychological health or well-being and unmet service needs. Future studies should investigate what specific components of case management are crucial in improving clients and their carers’ outcomes.
AIM: To compare the satisfaction levels of patients and carers with a community night nursing service. METHOD: Thirty seven patients and 23 carers completed satisfaction postal questionnaires. Respondents were further subdivided into acute, chronic and terminally ill patients and their carers. RESULTS: Satisfaction levels with the service were generally high, although respondents from the terminally ill group showed the lowest levels of satisfaction overall. The Kruskal-Wallis test showed that results between the groups were not significantly different. (Chi-square (x two) text= 3.52; df= two; P= 0.712). CONCLUSION: Although the results demonstrated positive levels of satisfaction with the community night nursing service, there were some respondents who indicated a low level of satisfaction. This could be explained by patients' and carers' lack of autonomy and inadequate provision of psychological care.
Background Even at the first episode of psychosis, high expressed emotion (EE) characterises over half of patient–carer relationships. This study compared a carer appraisal model of EE with the ability of illness factors to predict EE at the first episode.
Aims To investigate the utility of a carer appraisal model of EE in first-episode psychosis.
Method We compared high- and low-EE carers of people who had first-episode psychosis (n=46).
Results High EE in carers was associated with higher avoidant coping, higher subjective burden and lower perceived patient interpersonal functioning. Patient illness factors and carers’ distress levels were not associated with EE.
Conclusions Even at the first episode, carers’ psychological appraisal, not patient illness factors, is influential in determining high EE. Carers’ appraisal of their situation should be a primary target to lower or prevent high EE in early intervention for psychosis.
Background. With the emerging focus on home-based care, there is an increasing demand on spouses to look after their chronically ill partners at home. The theoretical aspects of caring have been much discussed in the literature, but the pragmatic aspects have received less attention. Carer stress has been explored, but little has been written about the meaning of caring to informal carers.
Aim. The aim of this paper is to report one of the major themes that emerged from a study conducted between 1998 and 1999 to explicate the meaning of caring from the perspective of spousal carers for people with multiple sclerosis in order to shed light on and understand the challenges and demands these carers encountered.
Methodology. An interpretive phenomenological approach was used to describe spousal carers’ experiences of caring for their partner. Ten spousal carers of people with multiple sclerosis participated. Data were collected through unstructured in-depth interviews and analysed by the method of hermeneutic analysis.
Findings. This paper presents one of the major themes identified: ‘caring as worrying’. While the meaning of caring that emerged from this theme supports many of the philosophical understandings of caring as discussed in the literature, worrying as a care responsibility provides a further insight. Caring as worrying describes caring as a complex emotional relationship of responsibility in these participants. They worried about their partners, their relationships with their partners and their future. They also worried about their own health, institutional care, and lack of government support.
Conclusion. Spousal carers’ worries have significant implications for health care professionals. The findings provide insight into the concerns and worries the carers of people with multiple sclerosis face when caring for their chronically ill partners at home.
Much confusion still surrounds the concept of empowerment and how it is to be translated into practice within the context of community care for service users and carers. A major limitation has been the tendency to treat empowerment as synonymous with participation in decision-making with little attention given to the ‘ecological’ model of empowerment where linkages have been found between community participation and measures of psychological empowerment. Training has been suggested as a means through which carers might become empowered, yet to date little empirical evidence has appeared within the literature to support this proposition. This study investigated whether attendance on a training programme to empower carers resulted in improvements in carers’ levels of perceived control, self-efficacy and self-esteem as partial measures of psychological empowerment. The findings demonstrated that whereas carers’ knowledge of services and participation increased as a result of the programme, no changes were found in measures of carer empowerment. The failure to consider how training needs to be designed in order to achieve changes in individual competence and self-agency are suggested as the most likely explanation for the lack of change observed in carers’ psychological empowerment. It is suggested that community care agencies should focus greater energies in determining how the policy objectives of empowerment are to be achieved through training, and in so doing make far more explicit the supposed linkages between training content, design, and its posited impact on individual behaviour or self-agency.
Although family members of cancer patients are at great risk of experiencing psychological distress, clinical tools to assist with recognizing and intervening with appropriate psychosocial care are sparse. This study reports on the first validation of the distress thermometer (DT) as a screening instrument for symptoms of depression and anxiety in family members of cancer patients. The DT was administered with the Hospital Anxiety and Depression Scale (HADS) in a sample of 321 family members. Receiver operating characteristics (ROC) demonstrated that the DT has good diagnostic utility relative to the HADS (area under the curve= 0.88 relative to the HADS anxiety scale; 0.84 relative to the HADS depression scale, respectively). The ROC curves indicate that using a cut-off of 4/5 maximizes sensitivity (86.2% HADS anxiety scale; 88.2% HADS depression scale) and specificity (71.2% HADS anxiety scale; 67.6% HADS depression scale); however, the alternative lower cut-off of 3/4 increases sensitivity (94.1% for both scales) and hence reduces the risk of missing distressed family members (specificity is 62.9% for HADS anxiety scale; 59.1% for HADS depression scale). The results offer validation of the DT for screening family members of cancer patients and support its use for clinical assessment. Distress screening with DT for family members of cancer patients is a promising and efficient approach to integrating family members in the program of care and provides the first step toward meeting their unmet needs with referral for supportive services. Copyright © 2008 John Wiley & Sons, Ltd.
A major developmental task in adolescence is identity exploration. Some young carers, due to the level of care being provided, may not have an opportunity to explore who they are outside of being a caregiver. This qualitative study explored the lives of 14 young carers (4 males, 10 females) to reveal impacts within their lives and on their identity development. Results revealed that psychological, family, and social impacts interacted and influenced the degree to which the young carer adopted a caregiver identity.
Background The majority of patients with Alzheimer's disease live outside institutions and there is considerable serious psychological morbidity among their carers.
Aims To evaluate whether family intervention reduces the subjective burden of care in carers of patients with Alzheimer's disease and produces clinical benefits in the patients.
Method A prospective single-blind randomised controlled trial with three-month follow-up in which the experimental group received family intervention and was compared with two control groups.
Results There were significant reductions in distress and depression in the intervention group compared with control groups at post-treatment and follow-up. There were significant reductions in behavioural disturbance at post-treatment and an increase in activities at three months in patients in the intervention group. Based on an improvement on the General Health Questionnaire resulting in a carer converting from a case to a non-case, the number to treat was three immediately post-treatment and two at follow-up.
Conclusions Family intervention can have significant benefits in carers of patients with Alzheimer's disease and has a positive impact on patient behaviour.
Background: Over 30,000 people in the U.S. have Huntington’s disease (HD), a disorder with numerous complicated, long-lasting and stigmatizing symptoms. Caregiving typically falls to the family, yet little is known about the caregiving experience of children and adolescents in the home.
Objective: Guided by the stress process model, this exploratory study sought to describe children and adolescents who care for a parent with HD and their caregiving experience, by detailing previously unknown relationships between caregiving, parent/child conflict, school problems, and psychological well-being of child/adolescent caregivers.
Methods: This cross-sectional study used semi-structured interviews with a purposive sample of 40 children and adolescents, aged 12–20, who care for a parent with HD. Data was analyzed using descriptive and correlational statistics. Measures included the Children’s’ Depression Inventory, The Conflict Behavior Questionnaire, and the Multidimensional Assessment of Caring Activities.
Results: Study participants have substantial caregiving responsibilities (>11), with half providing personal care to a parent. The majority experienced school problems and conflict with parents (60 and 92 % respectively). Caregiving tasks were associated with problems with school and conflict with the ill parent. Furthermore, parental symptoms were associated with poor psychological wellbeing, parental conflict, and school problems for the caregivers.
Conclusion: Children and adolescents are involved in numerous tasks and describe difficulties with their daily life and well-being. Results highlight the need for the development of support services for caregivers, as well best care practices for problematic HD symptoms. Study outcomes address minimizing the potential for negative caregiving experiences of these vulnerable caregivers.
Informal carers underpin community care policies. An initial cohort of 105 informal live-in carers of new stroke patients from the South Coast of England was followed up before discharge, six weeks after discharge and 15 months after stroke with face-to-face interviews assessing physical and psychological health, and social wellbeing. The carer cohort was compared to a cohort of 50 matched non-carers over the same time period. Carer distress was common (37–54%), started early on in the care-giving experience and continued until 15 months after stroke. Carers were 2.5 times as likely as non-carers to have significant psychological distress. Presence of early distress predicted 90% of those significantly distressed 15 months after stroke. Female carers were likely to develop distress earlier than male carers and in anticipation of the care-giving situation. Male carers developed similar levels of distress but only once the care-giving situation became reality. Further research is needed to establish ways to screen for psychological distress early after onset of caregiving, to find ways to tailor proven support interventions to the individual carer, and to evaluate the effect of early detection and support provision on later carer distress.
This study explored youth caregiving for a parent with multiple sclerosis (MS) from multiple perspectives, and examined associations between caregiving and child negative (behavioural emotional difficulties, somatisation) and positive (life satisfaction, positive affect, prosocial behaviour) adjustment outcomes overtime. A total of 88 families participated; 85 parents with MS, 55 partners and 130 children completed questionnaires at Time 1. Child caregiving was assessed by the Youth Activities of Caregiving Scale (YACS). Child and parent questionnaire data were collected at Time 1 and child data were collected 12 months later (Time 2). Factor analysis of the child and parent YACS data replicated the four factors (instrumental, social-emotional, personal-intimate, domestic-household care), all of which were psychometrically sound. The YACS factors were related to parental illness and caregiving context variables that reflected increased caregiving demands. The Time 1 instrumental and social-emotional care domains were associated with poorer Time 2 adjustment, whereas personal-intimate was related to better adjustment and domestic-household care was unrelated to adjustment. Children and their parents exhibited highest agreement on personal-intimate, instrumental and total caregiving, and least on domestic-household and social-emotional care. Findings delineate the key dimensions of young caregiving in MS and the differential links between caregiving activities and youth adjustment.
Background: Although informal end-of-life care is associated with significant physical and psychological morbidity for caregivers, few interventions have been developed to meet these needs. This study aimed to identify existing coping and support mechanisms among informal cancer caregivers in order to inform intervention development.
Method: One-to-one semi-structured qualitative interviews were undertaken with 20 informal cancer caregivers of home palliative care patients.
Results: Caregivers’ existing coping strategies included distraction, mental stimulation, emotional release, looking for the positive aspects of caregiving, and disengaging from stressful thoughts. The majority of the participants described the importance of support and understanding from family and friends.
Conclusions: The data suggests that feasible and acceptable interventions will be those that are targeted to caregivers to assist them in optimising existing coping strategies and support from family and friends.
This NICE quality standard covers recognition, assessment and management of bipolar disorder in adults (18 years and older) in primary and secondary care. It outlines eight quality statements designed to improve patient safety, patient experience and clinical effectiveness. The eight quality statements are: referral for specialist mental health assessment; personalised care plan; involving carers in care planning; psychological interventions; maintaining plasma lithium levels; valproate; assessing physical health; and supported employment programmes. Each quality statement is accompanied by clear quality measures. The standard aims to improve outcomes in: mortality rate, suicide rate, quality of life for people with severe mental illness, quality of life for carers, employment rates, and service user experience of mental health services.
Aim: To explore the use of community and dementia-specific services by informal carers caring for someone with dementia in a rural setting.
Methods: Carers of people with dementia were recruited through a variety of rural community services and invited to complete a survey related to the utilisation of community services.
Results: A total of 39 carers completed surveys. Despite 84% reporting use of the Aged Care Assessment Service and 61% reporting provision of printed information on the services available, less than half of the carers utilised commonly available support services. Only 46% received financial compensation for their carer role.
Conclusions: Rural carers of care recipients with behavioural and psychological symptoms of dementia underutilise community services. Services that may assist with carer stress and depression and services that provide advice on the management of distressing behavioural and psychological symptoms of dementia were utilised by less than half of the carers surveyed.
Community-based organizations (CBOs) have the potential to provide high quality services for orphaned and vulnerable children in resource-limited settings. However, evidence is lacking as to whether CBOs are reaching those who are most vulnerable, whether attending these organizations is associated with greater psychosocial wellbeing, and how they might work. This study addressed these three questions using cross-sectional data from 1848 South African children aged 9–13. Data were obtained from the Young Carers and Child Community Care studies, which both investigated child wellbeing in South Africa using standardized self-report measures. Children from the Child Community Care study were all CBO attenders, whereas children from Young Carers were not receiving any CBO services, thereby serving as a comparison group. Multivariable regression analyses were used to test whether children attending CBOs were more deprived on socio-demographic variables (e.g., housing), and whether CBO attendance was in turn associated with better psychosocial outcomes (e.g., child depression). Mediation analysis was conducted to test whether more positive home environments mediated the association between CBO attendance and significantly higher psychological wellbeing. Overall, children attending CBOs did show greater vulnerability on most socio-demographic variables. For example, compared to children not attending any CBO, CBO-attending children tended to live in more crowded households (OR 1.22) and have been exposed to more community violence (OR 2.06). Despite their heightened vulnerability, however, children attending CBOs tended to perform better on psychosocial measures: for instance, showing fewer depressive symptoms (B = − 0.33) and lower odds of experiencing physical (OR 0.07) or emotional abuse (OR 0.22). Indirect effects of CBO attendance on significantly better child psychological wellbeing (lower depressive symptoms) was observed via lower rates of child abuse (B = − 0.07) and domestic conflict/violence (B = − 0.03) and higher rates of parental praise (B = − 0.03). Null associations were observed between CBO attendance and severe psychopathology (e.g., suicidality). These cross-sectional results provide promising evidence regarding the potential success of CBO reach and impact but also highlight areas for improvement.
Objective:The consequences of informal care giving have been well documented in recent decades, and in many fields of illness and chronic disease, the role of informal carers has been recognised and investigated. Informal caregivers in the field of wound management and prevention have been largely unnoticed, despite the chronic nature of many wounds, the enduring nature of treatments and the impact on the physical and social environment; factors likely to have a significant impact on family and friends. The aim of this study was to consider what published evidence is available regarding the experience and role of informal caregivers in wound management or prevention.
Method: An integrated literature review was completed in October 2014 searching ESBCOhost database, Wound Management Association websites, and reviewing reference lists of accessed papers.
Results: A number of challenges were noted in accessing information about informal carers in relation to wound management and prevention. Most of these arose from the scarcity of studies for which informal carers was the primary focus. The available evidence suggests that informal carers have a role in wound management and prevention and that their involvement is likely to represent a noteworthy economic contribution to the wound management health-care team. Wound management was also determined to yield physical and psychological impacts for the carer. There was limited evidence of structured information, support or training for informal carers, which was flagged by carers as an area of need.
Conclusion: General conclusions about the burdensome experience and the valuable role of carers were the main interpretations possible from the evidence. More research which purposively and comprehensively examines the experience and role of informal caregivers is required. This knowledge would provide a foundation upon which interventions and support for informal carers and patients can be generated, which could further serve to enhance wound healing and the prevention of skin damage.
Objective: Family caregivers (FCGs) caring for loved ones with lung cancer are at risk for psychological distress and impaired quality of life (QOL). This study explores the relationship between FCGs' distress, per the distress thermometer (DT) and FCGs' QOL, burden, and preparedness. The purpose is to identify types of problems unique to FCGs in cancer care.
Methods: Family caregivers of patients diagnosed with non-small cell lung cancer were recruited from an adult outpatient setting at a comprehensive cancer center. Questionnaires included demographic information, City of Hope QOL Scale-Family Version, Caregiver Burden Scale, FCG preparedness, and DT. Baseline data were utilized for this analysis.
Results: Of the FCGs (N = 163), 68% were spouses, 64% female, and 34% worked full-time. FCG age ranged from 21 to 88 years with a mean of 57 years. FCGs cared for patients with non-small cell lung cancer stage I–III (44%) and stage IV (56%). Psychological distress (DT mean = 4.40) was moderate. DT scores were highly correlated with seven of the eight explanatory variables. Secondary principal components analysis of the explanatory variables combined correlated variables into three constructs identified as self-care component, FCG role component, and FCG stress component. Simultaneous multiple regression of distress onto the three components showed they accounted for 49% of the variance in distress.
Conclusion: This exploration of FCGs' concerns associated with elevated distress scores, as measured by the DT, helped identify three component problem areas. These areas warrant further psychosocial assessment and intervention to support FCGs as they care for the patient with cancer. Copyright © 2014 John Wiley & Sons, Ltd.
The study's rationale: Most people diagnosed with multiple sclerosis (MS) choose to live at home without known consequences for their children.
Aims and objectives: To study the personal experience of being a young caregiver of a chronically ill parent diagnosed with MS.
Methodological design and justification: Phenomenology was the methodological approach of the study since it gives an inside information of the lived experience.
Ethical issues and approval: The study was approved by the National Bioethics Committee and reported to the Data Protection Authority.
Research methods: We explored in 21 interviews the lived experience of 11 young caregivers who had cared for single chronically ill parents, diagnosed with MS.
Results: The participants felt silent, invisible and unacknowledged as caregivers and received limited professional assistance. They were left to provide their parents with intimate physical and emotional care and support that was demanding, embarrassing and quite difficult while feeling unsupported, excluded and abandoned. Their caring responsibilities lead to severe restrictions in life as their parents' disease progressed and they lived without a true childhood; left to manage far too many responsibilities completely on their own and at a young age. At the time of the interviews, most of the participants had left their post as primary caregivers. They were learning to let go of the emotional pain, some of them with a welcomed partner. Most of them were experiencing a healthy transition and personal growth, existentially moving from feeling abandoned towards feeling independent. However, some of them were still hurting.
Study limitations: In choosing participants for the study a sampling bias may have occurred.
Conclusions: Health professionals are urged to provide information, support and guidance for young carers in a culturally sensitive way and to take on the leading role of helping and empowering children and adolescents in similar situations.
Aim: To document the behavioural and psychological symptoms in patients with a diagnosis of established Alzheimer's disease (AD) for at least 3 years.
Methods: Patients with a ≥3 year history of AD (NINCDS/ADRDA) were recruited from old age psychiatrist and elderly care memory clinics. Information regarding duration of symptoms and non-cognitive symptomatology was obtained during interview with a carer or next-of-kin who had contact with the patient at least 3 times a week and for at least 3 years. MMSE, FAST and NPI including caregiver distress, were used to assess cognition, function and behavioural/psychological disturbance respectively. With each non-cognitive symptom the carer was asked to estimate its onset.
Results: The mean age of patients was 77 years and duration of illness 87 months. Mean MMSE was 8/30 and FAST score 6d. Of the psychological symptoms occurring at any stage, depression (56%), delusions (55%) and anxiety (52%) were most common, with hallucinations, elation and disinhibition occurring less frequently. In general, behavioural changes were more common with apathy occurring in 88% of patients, motor behaviour in 70%, aggression in 66%, irritability and appetite changes in 60% and sleep disturbance in 54%. All symptoms except apathy became less common when the carer was asked if they were still present in the last month. Mean onset of psychological symptoms was 47 months. Mean onset of behavioural symptoms was 48 months. Behavioural disturbance seemed to cause more care-giver distress than psychological change.
Conclusion: The results show behavioural and psychological symptoms in AD are common and distressing for carers. They appear to require a consistent period of neurodegeneration in order to emerge. Copyright © 2003 John Wiley & Sons, Ltd.
Support for family caregivers is a core function of palliative care. However, there is a lack of consistency in the way needs are assessed, few longitudinal studies to examine the impact of caregiving, and a dearth of evidence-based interventions. In order to help redress this situation, identification of suitable instruments to examine the caregiving experience and the effectiveness of interventions is required. A systematic literature review was undertaken incorporating representatives of the European Association for Palliative Care’s International Palliative Care Family Caregiver Research Collaboration and Family Carer Taskforce. The aim of the review was to identify articles that described the use of instruments administered to family caregivers of palliative care patients (pre and post-bereavement). Fourteen of the 62 instruments targeted satisfaction with service delivery and less than half were developed specifically for the palliative care context. In approximately 25% of articles psychometric data were not reported. Where psychometric results were reported, validity data were reported in less than half (42%) of these cases. While a considerable variety of instruments have been administered to family caregivers, the validity of some of these requires further consideration. We recommend that others be judicious before developing new instruments for this population.
Background A third of family carers of people with dementia report abusive behaviour towards the person for whom they are caring. This is the first longitudinal study to investigate such behaviour. Aims To test our hypotheses that carers’ reports of abusive behaviour would increase over time, and that change in abuse scores would be predicted by change in anxiety and depression scores. Method In total, 131 (71.6%) of the family/friend dementia carers consecutively recruited from new referrals to Essex and London community mental health teams who were interviewed at baseline, completed the revised Modified Conflict Tactics Scale to measure abuse 1 year later.
Results Sixty-three (48.1%) of the carers reported any abusive behaviour at baseline compared with 81 (61.8%) a year later (χ2 = 6.9, P = 0.009). An increase in abuse scores was predicted by an increase in anxiety and depressive symptoms (respectively β = 0.32, t = 3.9, P<0.001 and β = 0.24, t = 2.9, P = 0.005), and by less domiciliary care at baseline (β = –0.18, t = –2.2, P = 0.031).
Conclusions Most abusive behaviour reported by carers at baseline persisted or worsened in the following year, despite contact with specialist services. We suggest that trials of psychological interventions shown to reduce anxiety and depression in the carers of people with dementia are needed to determine whether they also reduce elder abuse, and can be delivered cost-effectively within the National Health Service (NHS).
Background: 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.
Methods: 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.
Results: 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.
Conclusion: 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.
Purpose of the study: Caring for a spouse diagnosed with Alzheimer’s disease holds potentially severe negative consequences for the physical and psychological well-being of the caregiver. As it is known that the maintenance of a flexible time perspective holds benefits for individual health, the main purpose of this study was to identify and describe the changes in the time perspective of persons caring for a spouse diagnosed with Alzheimer’s disease.
Design and Methods: The SELE instrument was administered in order to shed light on the time perspective of a total of 40 participants. A criterion group design was used, and a mixed methods approach adopted during the collection and analysis of data.
Results: The results of this research project highlighted the existence of a number of important differences regarding the time perspective of caregivers and non-caregivers. The time perspective of caregivers was severely affected by the caregiving situation and the accompanying grieving process. This proved to be one potential avenue through which the caregiving situation has its negative effect on caregivers’ well-being.
Implications: Owing to the usually insufficient funding for the care of demented patients, research regarding the identification of potential cost-effective methods to enhance the resilience of caregivers is of the essence. Maintenance of a balanced time perspective might prove to be to the benefit of caregiver psychological well-being.
Caring for a chronically ill relative takes a physical and mental toll on young carers, suggests a study in Austria.
Background: The relationship between the behavioural and psychological symptoms of dementia (BPSD) and negative outcomes in carers has been consistently demonstrated, however the quality of the assessment of the former in routine clinical settings is variable and validated interview-based scales are frequently underutilised.
Aims: To develop a carer self-report questionnaire, the Behavioural and Psychological Symptoms Questionnaire (BPSQ), for the assessment of the neuropsychiatric symptoms of dementia and associated carer distress.
Method: The BPSQ was administered to the carers of 30 community-dwelling older adults with diagnoses of Alzheimer's or vascular dementia and the results compared with interview assessment using the Neuropsychiatric Inventory (NPI).
Results: BPSD were present in 96.2% of patients. There was strong correlation (rs = 0.61, p < 0.001) between the BPSQ and interview with respect to measures of symptom frequency and severity. However, there was significant divergence between the two assessment schedules with respect to carer distress which was found to be significantly under-reported in the initial interview (U = 64.00, z = −5.22, p < 0.0001).
Conclusions: The BPSQ is an effective tool to complement clinical interview in the assessment and monitoring of BPSD, and provides useful additional information with respect to carer distress, which currently may be under recognised. A follow-up study is required to complete the work of validating the BPSQ. Copyright © 2007 John Wiley & Sons, Ltd.
The retrospective approach in palliative care research provides valuable insight into death and dying, and the effectiveness of palliative care. The method involves collecting information from proxies (usually significant others) after the patient's death. This exploratory study investigates whether proxies' accounts differ during bereavement, and provides possible explanations for why discrepancies might occur. Thirteen bereaved family members were interviewed, at three to five months and seven to nine months after the patient's death, about the patient's pain, anxiety, and depression, using semi-structured interviews and the symptom rating scale from the Views of Informal Carers-Evaluation of Services (VOICES) interview. Analysis of VOICES ratings over time indicated consistency for anxiety, while pain and depression ratings were variable and, in many cases, less severe and less frequent with the passage of time. Qualitative analysis of proxies' interview transcripts revealed a number of categories and themes that could be explained within the psychological and palliative care literature. The findings suggest that timing is an important consideration when gathering information from proxies retrospectively.
Background There is no reliable and valid self-report measure of depressive symptoms for people with learning disabilities. Aims To develop a scale for individuals with learning disability, and a supplementary scale for carers. Method Items were generated from a range of assessment scales and through focus groups. A draft scale was piloted and field tested using matched groups of people with or without depression, and their carers. The scale was also administered to a group without learning disabilities for criterion validation. Results The Glasgow Depression Scale for people with a Learning Disability (GDS—LD) differentiated depression and non-depression groups, correlated with the Beck Depression Inventory — II (r=0.88), had good test—retest reliability (r=0.97) and internal consistency (Cronbach's α=0.90), and a cut-off score (13) yielded 96% sensitivity and 90% specificity. The Carer Supplement was also reliable (r=0.98; α=0.88), correlating with the GDS—LD (r=0.93). Conclusions Both scales appear useful for screening, monitoring progress and contributing to outcome appraisal.
People with learning disabilities have high dependency needs and high prevalence of physical, psychological and social morbidities. Some studies have shown that South Asian and white populations have a similar prevalence of learning disabilities and related psychological morbidity (McGrother et al, 2002), although other studies have shown an increased prevalence of severe levels of learning disabilities in the South Asian population (Emerson et al, 1997). The aim of this study was to compare stress levels and unmet service needs in informal carers of South Asian and white adults with learning disabilities.A sample of 742 informal carers was selected from the Leicestershire Learning Disability Register. Data on carers' and subjects' demographic details, stress levels and unmet service needs were analysed and compared using chi‐square tests and logistic regression analyses. Substantial differences were observed between the two groups. Carers of South Asian adults with learning disabilities reported significantly higher levels of care provision and unmet needs. Major stress was reported in 23% of carers. This was more common in carers with poor health, in those caring for younger adults, carers of adults with psychological symptoms, and in those with an expressed need for moral support or respite care.Stress is common among informal carers of adults with learning disabilities and inequalities, in reported care given and unmet needs, exist between carers of South Asian and white adults. Practitioners need to be aware of factors associated with stress when assessing carers in this population.
Aims and objectives: To develop and validate a scale to measure the burden experienced by community health volunteers.
Background: Research demonstrates the burden experienced by informal carers is substantial. There is no available information about the burden placed on community health volunteers, nor is there a scale developed for the purpose of measuring their burden.
Design: An instrument development and psychometric analysis study was undertaken.
Methods: Exploratory principal component factor analysis was applied to investigate the internal structure of the new scale.
Results: The initial item pool derived from literature review and experts resulted in 44 items linked to volunteer burden. The final scale includes 20 items with a content validity index of 0·86 and Cronbach's alpha for test (0·82) and retest (0·77). The reliability coefficient of the test–retest results was 0·63 [95%-confidence interval = (0·44, 0·77)]. Principal component analysis identified five underlying factors: Factor 1 items are related to personal and family matters; factor 2 items are related to administrative issues; factor 3 items concern the community support; factor 4 items are related to organisational matters; and factor 5 items concern issues of adequate health promotion delivery.
Conclusion: The 20 item instrument designed to measure the burden on community health volunteers in Taiwan showed good internal consistency, content validity and construct validity. The findings infer that the scale may be an effective measure of the burden experienced by community health volunteers. Further testing of this scale within other countries that make use of community health volunteers is required to confirm the results.
Relevance to clinical practice: As volunteers play an important role in supporting the work of community health nurses, the new scale provides a means for nurses to assess volunteers' level of burden and develop interventions as required.
Background: This paper synthesises research evidence about the effectiveness of services intended to support and sustain people with dementia to live at home, including supporting carers. The review was commissioned to support an inspection regime and identifies the current state of scientific knowledge regarding appropriate and effective services in relation to a set of key outcomes derived from Scottish policy, inspection practice and standards. However, emphases on care at home and reduction in the use of institutional long term care are common to many international policy contexts and welfare regimes.
Methods: Systematic searches of relevant electronic bibliographic databases crossing medical, psychological and social scientific literatures (CINAHL, IngentaConnect, Medline, ProQuest, PsychINFO and Web of Science) in November 2012 were followed by structured review and full-text evaluation processes, the latter using methodology-appropriate quality assessment criteria drawing on established protocols.
Results: Of 131 publications evaluated, 56 were assessed to be of ‘high’ quality, 62 of ‘medium’ quality and 13 of ‘low’ quality. Evaluations identified weaknesses in many published accounts of research, including lack of methodological detail and failure to evidence conclusions. Thematic analysis revealed multiple gaps in the evidence base, including in relation to take-up and use of self-directed support by people with dementia, use of rapid response teams and other multidisciplinary approaches, use of technology to support community-dwelling people with dementia, and support for people without access to unpaid or informal support.
Conclusions: In many areas, policy and practice developments are proceeding on a limited evidence base. Key issues affecting substantial numbers of existing studies include: poorly designed and overly narrowly focused studies; variability and uncertainty in outcome measurement; lack of focus on the perspectives of people with dementia and supporters; and failure to understanding the complexities of living with dementia, and of the kinds of multifactorial interventions needed to provide holistic and effective support. Weaknesses in the evidence base present challenges both to practitioners looking for guidance on how best to design and deliver evidence-based services to support people living with dementia in the community and their carers and to those charged with the inspection of services.
International and national health policy seeks to increase service user and carer involvement in mental health care planning, but suitable user-centred tools to assess the success of these initiatives are not yet available. The current study describes the development of a new reliable and valid, interval-scaled service-user and carer reported outcome measure for quantifying user/carer involvement in mental health care planning. Psychometric development reduced a 70-item item bank to a short form questionnaire using a combination of Classical Test, Mokken and Rasch Analyses. Test-retest reliability was calculated using t-tests of interval level scores between baseline and 2–4 week follow-up. Items were worded to be relevant to both service users and carers. Nine items were removed following cognitive debriefing with a service user and carer advisory group. An iterative process of item removal reduced the remaining 61 items to a final 14-item scale. The final scale has acceptable scalability (Ho = .69), reliability (alpha = .92), fit to the Rasch model (χ2(70) = 97.25, p = .02), and no differential item functioning or locally dependent items. Scores remained stable over the 4 week follow-up period, indicating good test-retest reliability. The ‘Evaluating the Quality of User and Carer Involvement in Care Planning (EQUIP)’ scale displays excellent psychometric properties and is capable of unidimensional linear measurement. The scale is short, user and carer-centred and will be of direct benefit to clinicians, services, auditors and researchers wishing to quantify levels of user and carer involvement in care planning.
Purpose: This study evaluated the psychometric properties of the Dyadic Relationship Scale (DRS), which measures negative and positive dyadic interactions from the perspective of both the patient and the family caregiver. An important aspect of evaluating the DRS was that it be statistically sound and meaningful for both members of the dyad. Design and Methods: The study used a cross-sectional design. Survey packages were mailed to home health care patients and their family caregivers. The unit of analysis was the dyad, and exploratory and confirmatory factor analyses were conducted. We examined the reliability, discriminant, and concurrent validities of the instrument. Results: The data supported a two-factor DRS that included negative dyadic strain (patient α =.84; caregiver α =.89) and positive dyadic interaction (patient α =.86; caregiver α =.85). The analysis supported the DRS's construct, discriminant, and concurrent validity, as well as its reliability for both patients and family caregivers. Implications: Using the DRS to measure the impact of family care on positive and negative interactions inclusive of patients and caregivers can assist in identifying areas of difficulty and guide interventions to improve outcomes for both members of the dyad.
BACKGROUND: Studies on emotional distress and health-related quality of life (HRQOL) broadened the traditional bio-medical focus in MS research, but little attention was paid to general well-being indicators.
OBJECTIVE: To investigate for the first time both ill-being and well-being dimensions in persons with MS (PwMSs), caregivers and health professionals, in relation to both health and life in general.
METHODS: A multi-center study assessed participants' depression (Beck Depression Inventory-II), HRQOL (Short Form-36), psychological well-being (Psychological Well-Being Scales), optimal experience (Flow Questionnaire), life satisfaction (Satisfaction with Life Scale), hedonic balance (Positive Affect and Negative Affect Schedule). Demographic and clinical information was also gathered.
RESULTS: Overall, 71 PwMSs, 71 caregivers and 26 professionals were enrolled (N=168). Compared to healthy populations, PwMSs reported higher depression, lower HRQOL and lower general well-being; caregivers presented higher depression and lower general well-being; professionals reported the best ill- and well-being profiles. However, after controlling for demographic differences in age and education, hierarchical regressions highlighted that, though PwMSs reported higher depression and lower HRQOL than caregivers and professionals, their general well-being substantially leveled off.
CONCLUSIONS: Well-being coexists with ill-being. It can counterbalance the negative effects of disease or caregiving, and its measurement could complement and support medical intervention. Copyright © 2013 Elsevier B.V. All rights reserved.
Background: When identifying patients for palliative care, medical specialists find it necessary to disclose “hidden” patients: the patient's relatives. The issue has been discussed sporadically in Bulgaria; the present study was part of a larger investigation that examined the opinion of medical specialists, patients, and their relatives.
Method: The study protocol was explained to participants who gave written informed consent. Patients (n=211) were followed up on by their general practitioners (GPs) (n=42) during one year. All relatives were invited, and 173 (82%) agreed and participated. A questionnaire created by the authors was used. The data were analyzed by frequency distribution (descriptive statistics) and nonparametric tests (Pearson's χ2) and statistically processed using SPSS 17.0 (SPSS Inc., Chicago, IL).
Results: Relatives providing care were predominantly women, two-thirds over 60 years of age. There was a one-to-one ratio between caregivers for oncological and nononcological patients. The duration of care was more than one year in 53% of cases. Most relatives reported their loved ones found physical suffering “very hard to bear” (53%), while approximately 17% could not assess the extent of psychological suffering. The vast majority stated that they had difficulties in providing care, and 68% had financial problems in that respect.
Conclusion: Including relatives as users and part of the palliative care team has been discussed in the literature. In Bulgaria, participation is solely due to the lack of organized services for palliative care. Relatives participate in activities that are performed by trained staff in countries with developed palliative care; these activities, along with negative emotional experiences and economic difficulties, overburden these caregiving relatives significantly.
Reciprocal benefits may exist in relationships between carers and their adult sons/daughters with intellectual disabilities, but the topic has not been widely studied. The present study investigated whether older carers of adult children with intellectual disabilities perceive emotional and tangible reciprocity in their relationships and the association between perceived reciprocity with quality of life. The authors surveyed 91 parental carers (aged 50+ years, mean = 60.8). Bivariate correlations and hierarchical regression analyses assessed the relationship between tangible and emotional reciprocity and carer quality of life variables (physical and mental health, depressive symptomatology, life satisfaction) and carers' desire for an alternative residential situation of their son/daughter. Overall, more tangible and emotional support was given than received from their adult children. However, despite varying levels of intellectual disability and functional impairments of their care recipient, carers did report receiving considerable support. Relative disadvantage (i.e., giving more than received) in tangible reciprocity was associated with increased depressive symptomatology and poorer mental health but also reduced desire for seeking an alternative residential situation for the person for whom they are caring. These relationships were attenuated after covariance analyses. Emotional reciprocity was not associated with any of the outcome measures. The results suggest that perceptions of reciprocity are relevant in caregiving for intellectual disability and may be an underappreciated asset in coping with caregiving.
BACKGROUND: There is a growing population of older patients with End Stage Renal Disease (ESRD) managed without dialysis in Thailand, and services have yet to be developed to specifically respond to the needs of this group. As a consequence this population are likely to have unmet needs with respect to health care and suffer from symptoms that could be better managed.
OBJECTIVE: This qualitative study explored experiences and health care needs during the last year of life among older people with ESRD, managed without dialysis, from the perspective of bereaved carers.
METHODS: A retrospective post-bereavement approach was adopted to collect qualitative interview data. Purposive sampling was used to select 12 bereaved relatives of older patients with ESRD, managed without dialysis, who had died in the previous 5-10 months. Semi-structured interviews were conducted. Data were digitally recorded, transcribed and analysed through framework analysis.
RESULTS: Four main themes were identified: symptom experiences, impacts of being managed without dialysis, symptom management, and health care needs and utilisation of services.
CONCLUSIONS: Findings confirmed patients' needs were not being met and identified the need to develop approaches to symptom management at home, health education, and psychological and spiritual support at the end of life.
Evidence from a variety of sources suggests that there has been an increase of around 1% per annum in the prevalence of learning disability (LD) in adults over the last 35 years, due mainly to increases in survival. This trend is likely to continue for at least another ten years. Ninety‐six percent of adults notified to the Leicestershire LD register have an estimated IQ below 50 or need supervision every day to remain safe. Three‐quarters have additional significant disabilities including behaviour problems, psychological symptoms, physical dependencies or epilepsy. In one quarter the behaviour problem poses a major challenge to the achievement of an ordinary life. Two‐thirds indicate a need for help from one or other specialist. Informal carers are actively providing care for nearly half the adults, but a quarter are not content with care‐giving. Carers Report 40% more limiting health problems than their counterparts in the general population, in particular depression in women and cardiovascular problems in men. The specific areas of unmet need among carers Reporting depression are for financial help, long‐term social support and medical advice. Resource allocation for this client group needs to be reviewed in the light of substantial and unrecognised increases in prevalence which are continuing to occur, and the need for long‐term support.
Objectives: This study investigates the psychological and physiological impact of caring for a partner with fronto-temporal dementia (FTD). Carers were expected to exhibit greater stress and poorer psychological well-being in comparison with non-carers, and suppressed mucosal immunity.
Method: Twenty-five carers and 36 non-carers completed standardised psychological assessments of perceived stress, psychological well-being, coping and social support. Levels of mucosal immunity were assessed in saliva samples collected over the 3 days of the study, alongside daily assessments of stress, arousal and mood.
Results: Informal carers as a group reported greater stress and poorer psychological well-being, but there was considerable variation, with some carers reporting better psychological functioning than non-carers. Immune levels were not suppressed in carers compared with non-carers; counter to hypothesis, there was a positive correlation between immunity and poorer psychological well-being.
Conclusions: This research suggests that caring for a partner with FTD increases distress and carers might benefit from psychological intervention. However, the variation in psychological well-being requires explanation. Furthermore, this first examination of mucosal immunity employing participants experiencing enduring stress suggests that, in contrast to previous research, enduring stress does not lead to suppression of mucosal immunity and may actually enhance it.
Background. Despite 30 years of research attention, discharge planning and district nurse (DN) referral remain problematic and few cancer-related publications exist. With shorter hospitalizations, discharged cancer patients and their carers may experience unmet needs for assessment, information and support. Although DN referral might enable patient/carer needs to be met, the DN role lacks clarity.
Aim. To investigate the needs of people with cancer, and their lay carers during discharge from hospital to home, and identify the role of DNs in meeting these needs.
Method. In this qualitative study, 71 pre- and postdischarge interviews were performed with cancer patients and (where possible) their carers. Predischarge interviews focused on expectations and postdischarge interviews on experiences of discharge and aftercare. Interview tapes were transcribed and analysed thematically.
Results. Interviewees anticipated few aftercare needs during predischarge interviews but described met and unmet needs during postdischarge interviews. Unmet needs of those referred and not referred to the district nursing service were similar. Patients and carers had unmet needs for psychological support related to nutrition. Carers, especially those not resident with and not related to patients, had informational needs. Even very elderly, ill and isolated patients felt that other people had greater needs than their own and many thought that DNs only performed physical tasks.
Conclusion. All cancer patients discharged from hospital might be referred to a DN for ongoing assessment of needs. However, to ensure optimal results, the DN role needs to be clarified and public perceptions altered. Further research on psychological aspects of nutrition and the needs of carers not resident with/not related to patients is necessary.
The aim of this study was to develop a measure of social care outcome, an equivalent to the quality-adjusted life year (QALY) in health, which could be used in a range of circumstances.
The project drew on previous and parallel work developing the Adult Social Care Outcome Toolkit and the national Adult Social Care Survey. We developed and tested an instrument designed to reflect service users' social care-related quality of life (SCRQoL) and tested it with 30 service users from a variety of user groups and 300 older home care service users. In parallel, we explored discrete choice experiment (DCE) and best-worst scaling (BWS) approaches to preference elicitation with 300 members of the general population, and cognitively tested these with service users. We also cognitively tested a computer-aided time trade-off (TTO) exercise using SCRQoL attributes with members of the general population. In the second phase, using the finalised instruments, BWS interviews were conducted with 500 members of the general population, TTO interviews with a follow-up sample of 126 of these respondents, and BWS interviews with 458 people using equipment services.
The final measure had eight domains: personal cleanliness and comfort, accommodation cleanliness and comfort, food and drink, safety, social participation and involvement, occupation, control over daily life and dignity. In addition to measuring current SCRQoL, the instrument includes questions used to establish service users' views of their 'expected' SCRQoL in the absence of services. The difference between a person's current and 'expected' SCRQoL provides an indicator of service impact.
There was good evidence for the validity of the descriptive system and the validity of the current, expected and SCRQoL gain scales. The DCE and BWS approaches yielded similar results and, once introductions made clear, were understood by service users. BWS was used for the main stages, as it had technical and cognitive advantages. The computer-aided approach to TTO worked well, and respondents found questions acceptable and understandable. There were no substantive differences in the preferences of service users and the general population. The key domain was control over daily life, with the lowest and highest levels strongly estimated in all models. After allowing for observable heterogeneity, service users' preferences appeared to be more closely associated with their own SCRQoL than with those of the general population. The consistency of the results with the results of a previous study allowed the final model to be based on the preferences of 1000 members of the general population. A formula based on the relationship between TTO and BWS values was estimated for a social care QALY, with '0' equivalent to 'being dead' and '1' being the 'ideal' SCRQoL state. Members of the population experienced significantly higher SCRQoL than service users.
Although further work is needed, particularly to develop an equivalent measure for informal carers and to explore the links with health QALYs, the measure has considerable potential. A number of methodological advances were achieved, including the first application of TTO in a social care context and use of BWS to establish service user preferences.
The National Institute for Health Research Health Technology Assessment programme.
The 2011 census suggested that 244,000 young people in England and Wales under 19 provide unpaid care for someone with an illness or disability (Office for National Statistics, 2013). Young carers are not a homogeneous population; they represent children and young people from a variety of backgrounds with diverse experiences. Young carers are described as a 'hidden population' (H.M Government, 2010) hence the prevalence of young carers may be larger than data sources reveal. Previous research has identified negative aspects of caregiving and the impact on education, social, emotional, physical health and wellbeing. Young carers seem to be a vulnerable group and marginalised population, yet there is little reference to young carers in educational psychology literature. This research sought to listen to the voices of this hidden population from a strengths-based perspective to consider if this adds to our understanding of their resilience. The research adopted an inductive constructionist approach using Interpretative Phenomenological Analysis (IPA). Six participants aged between 11 and 13 years were recruited from a large rural Young Carers Project to attend three separate interviews. Participants were caring for a parent with a mental illness. Findings illustrated these young carers had very individual and complex lives, full of tensions, yet they found ways of managing and adapting to their situations. Implications for raising the profile of individuals with complex lives are discussed and consideration given to a sensitive, individualised and flexible response.
Background: Multiple sclerosis (MS) patients have high rates of complications and disability, including cognitive impairment, that often, impact on caregivers' emotional health. Clarification may help identify improved supportive strategies for both caregivers and patients.
Objective: We aimed to analyse whether MS domain-specific cognitive impairment can influence the severity of psychiatric symptoms of MS caregivers.
Methods: Patients with definite MS (n = 63) and their corresponding caregivers (n = 63) were recruited. In addition, 59 matched controls were enrolled for establishing normative cognitive data. Each patient underwent a complete neuropsychological testing for cognitive impairment and thorough clinical assessment, including data of disability status (EDSS), affective and emotional symptoms (depression, anxiety, anger) and fatigue. Psychiatric symptoms of the caregivers were assessed with the Beck Anxiety Inventory (BAI) and the Beck Depression Inventory (BDI).
Results: In logistic regression analyses, even after controlling for other MS-related symptoms, cognitive deficits, namely impairment on Symbol Digit Modalities Test (OR = 8.03, 95% CI = 1.27–25.33, p = 0.027) and on the Paced Auditory Serial Addition Test (OR = 6.86, 95% CI = 1.07–21.97, p = 0.042), were significant and independent predictors of more severe caregivers' depressive symptoms.
Conclusions: Information processing speed impairment is independently associated with more severe depressive symptoms of caregivers of MS patients, thereby reflecting a further deterioration of family setting.
Objectives: Caregiver burden is a key measure in caregiver research and is frequently used as a baseline measure in intervention studies. Previous research has found numerous factors associated with caregiver burden such as the relationship quality between carer and patient, the patient's cognitive ability, behavioural and psychological symptoms displayed by the patient, caregiver gender, adverse life events to name a few. Many studies have investigated these factors singularly however current thought suggests a multi-factorial role and inter-dependence of these factors. Based on this it was decided to investigate factors associated with caregiver burden using a multiple regression analysis in order to ascertain the predictive quality of these factors of caregiver burden.
Method: Cross-sectional study using validated measures of a patient's cognitive ability, ability to carry out day-to-day tasks and behavioural and psychological symptoms. Caregiver outcomes used are caregiver burden, relationship quality, caregiver confidence, experience of adverse life events, neuroticism, age and gender. Interviews and questionnaires were carried out on 74 patients diagnosed with dementia and their main caregivers from the Midlands of England.
Results: Multiple regression analysis showed that caregiver overload, carer-patient relationship quality, the experience of adverse life events, caregiver gender, caregivers' level of neuroticism, caregiver role captivity and the level of caregiver confidence accounted for over 80% of the variance in caregiver burden.
Conclusion: These results confirm previous correlational research on caregiver burden. Furthermore, due to the use of multiple regression analysis the findings also show factors that are clear predictors of caregiver burden and we offer possible suggestions from these findings on future clinical practice interventions on caregiver burden. Copyright © 2008 John Wiley & Sons, Ltd.
Aims and objectives. Few surveys have been carried out documenting the quality of life for non-cancer patients in general district hospitals reaching the final trajectory towards death. We carried out a survey of 80 patients facing the final stages of their chronic illness as well as their carers and hospital staff.
Background. With increasing life expectancy, a large majority of patients are older, where palliative care principles for patients with cancer are equally applicable. Few surveys have been carried out documenting the quality of life for non-cancer patients in general district hospitals reaching the final trajectory towards death in terms of patients’ and carers’ perspective, compared with the more extensive literature for patients with cancer.
Methods. Assessment tools include symptom check list, geriatric depression scale, Chinese Death Anxiety Inventory and the McGill Quality of Life Questionnaire for patients; SF-12 and the Chinese cost of care index for informal carers; and the Chinese Maslach Bumout and Death Anxiety Inventories for hospital staff.
Results. Lower-limb weakness (92·5%), fatigue (86·2%), oedema (85%), dysphagia (58·2%) and pain (48·8%) were the most common symptoms in this group of patients. The mean Chinese Caregiver Stress Index score was 45·93 (SD 6·45) (maximum score = 80). For staff, the mean SF-12 physical component score was lower than the Hong Kong population average.
Conclusion. The findings suggest that there is room for improvement in the quality of end-of-life care.
Relevance to clinical practice. Patients in the final stages of many chronic illnesses have high prevalence of symptoms comparable to those of patients with cancer. Raising awareness and improving training for all health care professionals, formulating guidelines and care pathways and incorporating quality of care as key performance indicators are measures to improve the quality of end-of-life care.
Aims and objectives: To characterise the main difficulties, coping strategies, sources of satisfaction and levels of burden disclosed by informal caregivers of older people who are dependent due to physical and mental causes, in the Portuguese context and to compare the impact between caregivers for older people with physical dependence and caregivers for older people with mental dependence.
Background: Caring for a dependent older person is a complex process that puts two people in interaction, each with their own traits and their own histories of private life. When performing this role, the care provider needs to know how to deal with difficulties through a range of coping strategies. The outcome of this relationship may result in burden as a result of the volume of care, the complexity of care or the caregiver's inability to provide needed care. Caring for a family member can also be a source of satisfaction thanks to the pleasure of giving back and/or providing well-being.
Design: This is a quantitative, analytical and correlational study.
Methods: This study was conducted among two distinct groups–caregivers of older people without dementia (physical impairment) and caregivers of patients with dementia (impairment of a predominantly cognitive nature). Data were collected by administering a previously defined questionnaire that sought to gather various sorts of information (sociodemographic, clinical and environmental) and that included certain specific instruments, such as dependency ratio, cognitive assessment tests, an index of difficulties, a satisfaction index, an index of coping strategies and a burden scale.
Results: The sample consisted in 184 caregivers over 40 years of age, of which, 101 cared for dependent people without cognitive impairment and 83 cared for people with dementia. Most caregivers were women (87%), most were married (78·8%), with a low level of education (33·7% did not complete primary school and only 7·1% had any postsecondary education). Most were spouses or daughters (75·5%). The caregivers of older patients with dementia had lower levels of satisfaction, with a mean difference of 12·95 percentage points, p < 0·001. It appears that caring for older people with dementia implies a greater burden, with a mean difference of 15·4 percentage points, p < 0·001. There is a strong correlation between difficulties and burden (r = 0·89, p < 0·001) and between the effectiveness of coping strategies and satisfaction (r = 0·92, p < 0·001).
Conclusions: This study suggests that caregivers of older people with dementia are more vulnerable due to their higher levels of burden, which are associated with higher levels of difficulties and reduced sources of satisfaction.
Relevance to clinical practice: These data are essential for the management and implementation of health programmes that can reduce the vulnerability of caregivers. Programmes should address caregivers' difficulties and burden as a way to promote satisfaction with providing care.
Objective: In this follow-up study, the long-term influence of group living homes (GLHs) on informal caregiver distress was compared with modern yet regular nursing homes (NHs).
Method: Informal caregivers of GLH (N = 37) and NH residents (N = 49) were studied at the time of admission, 6 months thereafter, and approximately 24 months after admission. Repeated measures of ANOVA were performed to study group-by-time effects on psychopathology, role overload, and feelings of competence.
Result: All outcomes of psychological distress in GLH caregivers showed significantly greater decline compared with NH caregivers during the first six months after admission. The course of psychological distress stabilized in both caregiver groups after six months.
Conclusion: GLHs may have played a role in reducing caregiver burden during the first six months after the nursing home admission of the care recipient. The stabilization of caregivers’ psychological distress between T1 and T2 may indicate that there is no further room for improvement in the GLH and NH groups after six months. The implication would be that both GLHs and NHs succeeded in keeping caregivers’ distress relatively low over the long term. More knowledge is needed on whether and how caregivers’ psychological distress after institutionalization of the care recipient can be reduced to a greater extent.
Objective: To identify and summarise studies of the psychological well-being of informal carers of people with chronic obstructive pulmonary disease.
Design: The review included studies if they reported the carers perspective of caregiving – studies that focused mostly on the person with chronic obstructive pulmonary disease were included only if the carers perspective of the caregiver role could be extracted.
Data sources: Electronic searches of MEDLINE, CINAHL, PsychInfo, Sociological Abstracts and The Cochrane Library were carried out between December 2008 and February 2009, with update searches undertaken in June 2011.
Review methods: A narrative approach was adopted to evaluate studies according to their contribution and drew together evidence from a range of methodologies, including qualitative and quantitative studies.
Results: Twenty studies were included in this review. Twelve studies focuses only on the caregiver (quantitative studies = 7 and qualitative studies = 5) and eight included caregivers and the person with chronic obstructive pulmonary disease (quantitative = 6 and qualitative = 2). Common methodological limitations of studies included in this review were a lack of non-caregiver age-matched comparison groups, focus on the experience of female carers, small sample sizes, and failure to follow-up caregivers longitudinally. Seven studies provided estimates of the prevalence of psychological distress among caregivers but no conclusions could be drawn from the current evidence base. The totality of the current evidence-base suggests that many factors are related to caregiver psychological distress, but it is not possible to gauge the prevalence of this at present.
Conclusion: Further studies are needed to clarify the prevalence of chronic obstructive pulmonary disease caregivers’ psychological comorbidity and disease specific factors that predict poorer carer health outcomes. That work will enable appropriate interventions to be developed and evaluated.
Objective: To determine whether caregiving grandparents are at an increased risk for depressive symptoms.
Data Source: National sample (n=10,293) of grandparents aged 53–63 years in 1994, and their spouse/partners, who took part in the Health and Retirement Study (HRS).
Study Design: Grandparents were surveyed in 1994 and resurveyed every two years thereafter, through 2000. Over that period, 977 had a grandchild move in or out of their home. These grandparents served as their own controls to assess the impact of having a grandchild in the home.
Data Extraction: Depressive symptoms were measured using an abbreviated form of the Center for Epidemiologic Studies—Depression (CES-D) scale, scored 1–8, with a score ≥4 associated with depression “caseness.”
Principal Findings: At the time of the 1994 interview, 8.2 percent of grandparents had a grandchild in their home. However, there was substantial variation across demographic groups (e.g., 29.4 percent of single nonwhite grandmothers, but only 2.0 percent of single white grandfathers had a grandchild in residence). The impact of having a grandchild in the home varied by grandparent demographic group, with single grandparents and those without coresident adult children experiencing the greatest probability of elevation in depressive symptoms when a grandchild was in residence. For example, single nonwhite grandmothers experienced an 8 percentage point increase in the probability of having a CES-D score ≥4 when a grandchild was in their home, compared to when a grandchild was not in their home, controlling for changes in health care, income, and household composition over time (95 percent CI=0.1 to 15.0 percentage points).
Conclusions: Grandparents have a greater probability of elevated depressive symptoms when a grandchild is in their home, versus when a grandchild is not in their home. Single women of color bear a disproportionate burden of the depression associated with caring for grandchildren. Since an increasing number of grandparents function as a de facto safety net keeping their grandchildren out of formal foster care, identifying strategies to support the health and well-being of caregiving grandparents is an emerging priority.
Background: Individual assessment of needs has been recognised as the most appropriate way to allocate health and social care resources. These assessments, however, are often made by the staff or by a carer who acts as an advocate for the user themselves. Little is known about how these proxy measures compare to how individual patients perceive their own needs.
Aim: The aim of this study was to measure and compare ratings of need for older people with mental health problems by the older person themselves, their carer, and an appropriate staff member.
Method: One-hundred and one older people were identified from various mental health services and 87 users, 57 carers, and 95 staff were interviewed using the Camberwell Assessment of Need for the Elderly (CANE) to identify met and unmet needs.
Results: Users identified significantly fewer of their needs (5.5) than either staff (8.1) or carers (8.3) did, but this difference was accounted for by people with dementia reporting less needs. Users identified fewer psychological or social needs (e.g. daytime activities, company, or carer distress) than staff or carers did. The average Kappa indicating level of agreement between staff and user was 0.52, between user and carer was 0.53, and between carer and user was 0.58. This showed only a fair level of reliability between different ratings of need.
Conclusions: User perspectives should be given a high priority when assessing individual needs. Fears that assessment of need would be unduly time-consuming or would simply reflect individual demands should be allayed. A user-based assessment will assist healthcare providers to prioritise needs according to what the user themselves consider to be most important, beneficial, and acceptable to them. Reliance solely on assessment by staff or carers may not lead to the most equitable or appropriate use of services. Copyright © 2003 John Wiley & Sons, Ltd.
This study examined support, stress, and well-being between adults who provide care for an aging and disabled parent and those who care for an aging and disabled parent-in-law. The study utilized a sample of individuals caring for a parent (n = 77), individuals caring for an in-law (n = 26) and a comparison group of noncaregivers (n = 1,939) from the Midlife Development in the United States study. In-law caregivers provided more financial assistance but adult child caregivers provided more emotional support and unpaid work. Adult child caregivers reported poorer mental health and family strain; in-law caregivers reported more spouse support and less family strain.
Background: Current end-of-life care policy and guidance recognises the important contribution of family carers, recommending that their needs should be assessed to support them in their caring role. How regular carer assessment is to be achieved is unclear, particularly because there is no evidence-based tool for directly assessing carers’ support needs that is suitable for use in end-of-life home care practice.
Aims: To obtain carers’ perspectives of key aspects of support needed during provision of end-of-life care at home and to develop a carer support needs assessment tool suitable for use in everyday practice.
Design: Qualitative using focus groups and telephone interviews. Thematic analysis uses a framework approach.
Setting/participants: 75 adult bereaved carers who were family members/friends of patients referred to five Hospice at Home services in the UK.
Results: Carers’ needs fell into two distinct groupings of key support areas or ‘domains’: support to enable them to provide care for their relative and more direct personal support for themselves. Many aspects of supportive input were common across domains, for example, anticipatory information, explanations or being included in the care process. Therefore, the tool was designed as a screening measure, to identify support needs requiring further detailed assessment.
Conclusions: The Carer Support Needs Assessment Tool (CSNAT) is an evidence-based direct measure of carers’ support needs in 14 domains. It is short but comprehensive in approach and thus suitable for both end-of-life care research and practice. Further work has been undertaken to test its psychometric properties.
The objective of this pilot Norwegian intervention study was to explore whether use of information and communication technology (ICT) by informal carers of frail elderly people living at home would enable them to gain more knowledge about chronic illness, caring and coping, establish an informal support network and reduce stress and related mental health problems. Potential participants were close relatives of an elderly person with a diagnosis of a chronic illness dwelling in the same household who wished to continue caring for their relative at home, were 60 years of age or older, had been caring for less than 2 years, were a computer novice and had Norwegian as their first language. Nineteen elderly spousal carers participated in the study from two municipalities in eastern Norway. The project commenced in January 2004 and consisted of a multimethod evaluation model. Outcomes measured included carers’ social contacts (measured by the Family and Friendship Contacts scale); burden of care (measured by the Relative Stress scale); and knowledge about chronic disease and caring, stress and mental health and use of ICT (examined via a composite carer questionnaire). These quantitative data were collected immediately prior to the study and at 12 months. Qualitative data were also collected via focus group interviews with participant carers at 7 months. At follow-up, quantitative measures did not reveal any reduction in carer stress or mental health problems. However, carers reported extensive use of the ICT service, more social contacts and increased support and less need for information about chronic illness and caring. Contact with and support from other carers with similar experiences was particularly valued by participants. The intervention also enhanced contacts with family and friends outside the carer network. Thus, it can be seen that ICT has the potential to contribute to health promotion among elderly spousal carers.
The importance of informal carers has only been partially recognised in the UK. A brief examination of recent policy such as the UK Carers Act will highlight the need for further action in this area. The conceptual debate about ‘what is caring’ is summarised: does it involve physical activities only? Are emotional elements also involved? The significance of the informal caregiver's role is discussed. Informal caregiving can bring rewards, but it often has to coincide with other equally demanding roles including employment. Moreover, psychological distress is common among informal carers generally, and the likelihood of poor psychological well-being is greater in carers of people with dementia compared with relatives of older people without dementia. The need to ‘care for carers’ is discussed. Many interventions aimed at caregivers are inadequate, and the optimum type of intervention may vary depending on the needs of the individual carer. Wider social and demographic changes may jeopardise the informal caring network, as it currently exists. Should our ‘invisible’ carers become unwilling, or unable, to sustain their caring role then the consequences could be bleak.
It is widely accepted that cancer is an intersubjective experience that impacts upon the psychological well-being of people with cancer and informal carers, as well as on couple relationships. This qualitative study examined the nature and consequences of cancer on the relationship between informal carers and the person with cancer, from the perspective of Australian cancer carers. Sixty-two carers (42 women and 20 men), across a range of cancer types, stages and relationship dyads took part in semi-structured interviews. Participants reported that cancer had precipitated a change in roles and in the dynamics of the relationship, including having to take on quasi-medical tasks and decisions, neglecting self and other relationships, changes to the emotions or personality of the person with cancer, changed patterns of communication, and changes to sexuality and intimacy. The impact of the changed relationship included sadness, anger and frustration, as well as feelings of love and being closer together, resulting in relationship enhancement. Women were more likely to report changes in the person with cancer and to mourn the previous relationship, while more men reported relationship enhancement.
Objective To evaluate the effectiveness of a voluntary sector based befriending scheme in improving psychological wellbeing and quality of life for family carers of people with dementia. Design Single blind randomised controlled trial. Setting Community settings in East Anglia and London. Participants 236 family carers of people with primary progressive dementia. Intervention Contact with a befriender facilitator and offer of match with a trained lay volunteer befriender compared with no befriender facilitator contact; all participants continued to receive “usual care.” Main outcome measures Carers’ mood (hospital anxiety and depression scale—depression) and health related quality of life (EuroQoL) at 15 months post-randomisation. Results The intention to treat analysis showed no benefit for the intervention “access to a befriender facilitator” on the primary outcome measure or on any of the secondary outcome measures. Conclusions In common with many carers’ services, befriending schemes are not taken up by all carers, and providing access to a befriending scheme is not effective in improving wellbeing. Trial registration Current Controlled Trials ISRCTN08130075.
Unlike professional caregivers such as physicians and nurses, informal caregivers, typically family members or friends, provide care to individuals with a variety of conditions including advanced age, dementia, and cancer. This experience is commonly perceived as a chronic stressor, and caregivers often experience negative psychological, behavioural, and physiological effects on their daily lives and health. In this report, the authors describe the experience of a 53-year-old woman who is the sole caregiver for her husband, who has acute myelogenous leukaemia and was undergoing allogenic haematopoietic stem cell transplantation. During this intense and unpredictable course, the caregiver's burden is complex and complicated by multiple competing priorities. Because caregivers are often faced with multiple concurrent stressful events and extended, unrelenting stress, they may experience negative health effects, mediated in part by immune and autonomic dysregulation. Physicians and their interdisciplinary teams are presented daily with individuals providing such care and have opportunity to intervene. This report describes a case that exemplifies caregiving burden and discusses the importance of identifying caregivers at risk of negative health outcomes and intervening to attenuate the stress associated with the caregiving experience.
Providing care for an ageing parent can be one of the most fulfilling life experiences for an adult child. It can also be one of the most exhausting physically, emotionally and financially. A carer experiences psychological and emotional changes when their dependent parent or spouse is placed into formal care. This research project uses the Montgomery Borgatta Caregiver Burden Scale, amended with a questionnaire, in a self-administered, anonymous survey to explore perceptions of caregiving burden before and after the nursing home placement periods. This research showed that numerous factors influence carers' perceptions of burden and the quality of relationships among family members.
Caregivers of Parkinson's disease patients face responsibilities stemming from providing assistance to a person, usually a family member, who suffers a progressively disabling disease characterized by both motor and nonmotor symptoms. These circumstances impact on the physical, emotional and psychosocial aspects of the caregivers'lives and, therefore, on their quality of life (QoL). Studies have identified factors related to caregivers'global QoL and health-related QoL, causing caregivers distress and affecting their QoL. These factors are related to patients'and caregivers'characteristics and may be classified as sociodemographic, psychological and disease related. Caregiver's burden refers to the multiplicity of difficulties ensuing as a consequence of caring, including, for example, health problems, modification of habits, economic loss and QoL deterioration. Therefore, burden-related factors are also briefly reviewed. The implementation of effective interventions to preserve the caregiver’s wellbeing and allow the patients to remain at home and be properly assisted is a pragmatic consequence of this knowledge.
OBJECTIVES: The purpose of this study was to examine whether a brief structured multicomponent group programme for carers of people with acquired brain injury (ABI) was effective in reducing carer distress, strain, and critical comments between carer and person with an ABI compared to a waiting list control condition. DESIGN: Waiting list controlled study. Pre- and post-test design with outcomes measured at induction, at the end of the intervention, and at the 3-month follow-up.
METHODS: One hundred and thirteen carers took part in the study: 75 carers in the intervention group and 38 in the waiting list control group (2:1 ratio). All participants completed assessments of caregiver strain (Caregiver Strain Index), perceived criticism towards and from the person with an ABI (Perceived Criticism Scale), and psychological distress (Hospital Anxiety and Depression Scale). The person with an ABI was also assessed on the Functional Independence Measure/Functional Assessment Measure.
RESULTS: Using an intention to treat analysis, there were significant effects of group (intervention vs. waiting list control) at the 3-month follow-up on carers' perceptions of stress and strain resulting from caring, and perceptions of criticism received by the carer from the person with an ABI. A subsequent per-protocol analysis showed an additional reduction at 3 months in levels of criticism expressed towards the person with an ABI by the carer. There was no significant effect of the intervention on psychological distress.
CONCLUSIONS: The structured multicomponent carers programme showed beneficial effects in terms of reducing carer strain and in the reduction of elements of perceived criticism at the 3-month follow-up; however, it did not significantly affect psychological distress in carers, suggesting the need for additional support for this group of carers.
STATEMENT OF CONTRIBUTION: What is already known on this subject? A number of studies have suggested that carers of people with acquired brain injury (ABI) experience greater levels of carer burden and mental health difficulties than carers of other patient groups. Previous interventional studies on ABI are few, and such studies have diverged in the extent to which they have been oriented towards education, psychological support, or management of behavioural difficulties, making results somewhat difficult to apply in community health settings with this potential client group. What does this study add? We develop, describe, and evaluate a brief structured multicomponent carers' training and support programme for carers of people with ABI. Not all outcomes were affected positively by the intervention. While the intervention successfully reduced carer strain and critical comments, distress did not significantly reduce compared to people in a waiting list control group. Carers who were spouses/partners and carers who were parents exhibited comparable levels of strain, distress, and perceived criticism. Younger carers reported significantly higher levels of distress and carer strain at induction to the programme. The positive effects of the programme were maintained for at least 3 months, suggesting that it may have initial validity for improving some of the negative aspects of the carer experience.
© 2015 The British Psychological Society.
Although most people with Parkinson’s disease are cared for in the community, little is known about family members’ lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers’ lived experiences of palliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson’s disease were interviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had not been fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring for someone with Parkinson’s disease not accessing specialist palliative care services. Participants also reflected upon the physical and psychological impact of caring in the advanced stage of Parkinson’s. A multi-disciplinary team-based approach was advocated by participants. These findings provide important insights into the experience of caregiving to patients with Parkinson’s disease in the home at the end-of-life stage. According to palliative care standards, patients and their carers are the unit of care; in reality, however, this standard is not being met.
Aims: Long-term indwelling catheterisation may affect health related quality of life, but clinical assessment and monitoring of people with indwelling catheters is poorly recorded because there are no validated measures to capture these criteria. In this paper, we describe the development of the ICIQ-Long Term Catheter quality of life (ICIQ-LTCqol), one of the modules of the ICIQ series, an international project to standardise assessment of lower pelvic dysfunction: www.iciq.net.
Methods: In-depth interviews were conducted with 27 catheter-users and 4 informal carers and cognitive debriefing with a further 31 catheter-users and clinical experts to evaluate clarity and comprehensiveness. The draft 44 item questionnaire was then sent by post to 893 long-term catheter-users; the 370 completed questionnaires were used to test content validity, test re-test reliability and internal consistency (Cronbach α coefficient). Factor analysis alongside expert opinion was used to formulate the final questionnaire of 16 items. This was then sent by post to another 438 long-term catheter-users to evaluate domain scores.
Results: The final questionnaire consists of two scored domains: catheter function and concern (9 items) and lifestyle impact (3 items) and four standalone items, relating to pads, pain, sexual activity and bladder spasm. Levels of missing data are good (mean 3.6%) with moderate to good agreement and acceptable internal consistency (Cronbach's alpha 0.76 and 0.74 for each domain respectively), suggesting acceptability and stability of the questionnaire.
Conclusion: The ICIQ-LTCqol is a psychometrically robust self-report questionnaire for the clinical assessment and evaluation of health related quality of life for long-term catheter users.
Background The growing global epidemic of HIV/AIDS has a significant impact on the lives of both people living with HIV/AIDS and their family members including children. Children of parents with HIV/AIDS may experience an increased responsibility of caregiving in family. However, limited data are available regarding the caregiving experience and its impact on psychosocial well-being among these children. This study was designed to address these issues by using qualitative data collected from children affected by HIV/AIDS in China.
Methods The qualitative data were collected in 2006 in rural central China, where many residents were infected with HIV/AIDS through unhygienic blood collection procedures. In-depth individual interviews were conducted by trained interviewers with 47 children between 8 and 17 years of age who had lost one or both parents to AIDS.
Results Findings of this study suggest that many children affected by AIDS had experienced increased responsibilities in housework and caregiving for family members. Such caregiving included caring for self and younger siblings, caring for parents with illness and caring for elderly grandparents. Positive impacts from children's participation in family caregiving included personal growth and emotional maturity. Negative consequences included physical fatigue, psychological fear and anxiety and suboptimal schooling (dropping out from school, repeated absence from school and unable to concentrate in class).
Conclusion While the increased caregiving responsibilities among children reflected some cultural beliefs and had some positive effect on personal growth, the caregiving experience generally negatively effected the children's physical and mental health and schooling. The findings in the current study suggest that community-based caregiving support is necessary in areas with high prevalence of HIV and limited resources, especially for the families lacking adult caregivers. In addition, social and psychological support should be made available for children participating in family caregiving.
This paper considers some of the challenges involved in studying informal carers in cancer contexts. It reviews current knowledge by examining, first, the dominant psycho-oncological research tradition that focuses on psychological distress among carers and, second, the more recent sociologically informed body of work examining what carers actually do and the contribution that they make to patient care. The authors suggest that this second sociologically informed approach offers an important counter-weight to the psycho-oncological perspective. The developing research agenda for a sociology of cancer caring is briefly outlined.
Some of the needs that people with dementia and their informal carers currently perceive as insufficiently met by regular care and support services might be alleviated, or even be met, using modern Information and Communication Technology (ICT). The study described in this paper was designed to provide an insight into the state of the art in ICT solutions that could contribute to meet the most frequently mentioned unmet needs by people with dementia and their informal carers. These needs can be summarized as (1) the need for general and personalized information; (2) the need for support with regard to symptoms of dementia; (3) the need for social contact and company; and (4) the need for health monitoring and perceived safety. Databases that were searched include: PubMed, Cinahl, Psychinfo, Google (Scholar), INSPEC and IEEE. In total 22 websites and 46 publications were included that satisfied the following criteria: the article reports on people with dementia and/or their informal carers and discusses an ICT-device that has been tested within the target group and has proven to be helpful. Within the first need area 18 relevant websites and three studies were included; within the second need area 4 websites and 20 publications were included. Within the third and fourth need area 11 and 12 publications were included respectively. Most articles reported on uncontrolled studies. It is concluded that the informational websites offer helpful information for carers but seem less attuned to the person with dementia and do not offer personalized information. ICT solutions aimed at compensating for disabilities, such as memory problems and daily activities demonstrate that people with mild to moderate dementia are capable of handling simple electronic equipment and can benefit from it in terms of more confidence and enhanced positive effect. Instrumental ICT-support for coping with behavioral and psychological changes in dementia is relatively disregarded as yet, while support for social contact can be effectively realized through, for example, simplified (mobile) phones or videophones or (entertainment) robots. GPS technology and monitoring systems are proven to result in enhanced feelings of safety and less fear and anxiety. Though these results are promising, more controlled studies in which the developed ICT solutions are tested in real life situations are needed before implementing them in the care for people with dementia. It is recommended that future studies also focus on the integration of the current techniques and solutions.
Informal carers of an adult with mental illness have asked that respite care be an integral component of mental health service provision. The present study involved a pilot investigation of the effectiveness of accessing respite care for carers of individuals with a mental illness. It was hypothesised that compared to carers who have not accessed respite care, carers who access respite care would report lower burden and distress, higher life satisfaction and better health after their use of respite care. The study used a respite care group and comparison group of respite care non-users with a pre- and post-respite assessment, and 3-month follow-up design. Participants were 20 carers recruited through carer organisations; 10 carers who accessed respite and 10 carers who had never accessed respite. As expected, the respite care group reported a decrease in burden, but unexpectedly also reported an increase in stress, whereas the comparison group did not change over time. Further research is needed to explore the potential benefits and possible risks associated with different types of respite care using large samples within randomised controlled trials in order to inform respite care policy and service planning.
Hull Churches Home from Hospital Service (HCHfH) has been at the forefront of bringing assistive technology into the homes of the elderly with chronic illness’ through Telehealth projects since 2008. Over that period the organisation has had a steep learning curve both in terms of introducing assistive technology to an ageing population and familiarising them with the benefits they go on to experience, building a track record in ensuring assistive technology is used and not rejected, our major work currently involves remote monitoring of clients with cardiac conditions and COPD in the community. HCHfH piloted an assistive technology project in 2013; The Carers Assistive Technology (CATs) project, aimed at supporting the local carers of dementia sufferers through the use of simple technological devices e.g. door charms, memo minders, digital photo albums and PARO the interactive seal cub. Family caregivers of people living with dementia experience a high incidence of psychological distress and physical ill-health associated with caring which can reduce their life expectancy. The dominant causes of carer’s distress include the person living with dementia associated behaviour that challenges, depression, anxiety, risk of falling, social isolation, emotional distress and continual 24 hour support without a break. In 2011 HCHfH carried out a needs analysis, “The needs of informal carers of those living with dementia.” Funded by the Department of Health, involving carers and people living with dementia. The study highlighted that family caregivers would like stimulating support for the person living with dementia and to be given confidence to take time out for themselves. The report indicated this support should be offered to them in their own homes. The pilot aim was to evaluate the use of assistive and ambient technologies in the home of a person with dementia and to measure the effectiveness of the different types of technology available, allowing respite for the carer. Maximising the dementia patient’s ability range within their own home environment, enabling the carer to have a more fulfilling lifestyle, while also facilitating their understanding of the process and evolution of End of Life Care of Dementia and the tools available to assist. By supporting the carers and the patient with their abilities and maintaining their independence in their own home the CATs project aided their understanding of dementia, its stages and the equipment that is available to help with everyday life. It offered both practical and emotional support through a team of highly skilled and suitably qualified staff and volunteers. This programme was particularly relevant as the service was driven by user needs and wishes, rather than a one-size-fits-all deployment mentality. Using assistive technology in the homes of those living with dementia provided an opportunity for the carer to take a break and have a more productive life e.g. access to health care, continue employment and maintain relationships. CATs showed how assistive technology can reduce the anxiety of a person living with dementia, keeping their brain working hard, allowing social interaction and involvement, whilst minimising the feelings of isolation and loneliness.
Background: Informal carers face many challenges in caring for patients with palliative care needs. Selecting suitable valid and reliable outcome measures to determine the impact of caring and carers’ outcomes is a common problem.
Aim: To identify outcome measures used for informal carers looking after patients with palliative care needs, and to evaluate the measures’ psychometric properties.
Design: A systematic review was conducted. The studies identified were evaluated by independent reviewers (C.T.J.M., M.B., M.P.). Data regarding study characteristics and psychometric properties of the measures were extracted and evaluated. Good psychometric properties indicate a high-quality measure.
Data sources: The search was conducted, unrestricted to publication year, in the following electronic databases: Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, EMBASE, PubMed, PsycINFO, Social Sciences Citation Index and Sociological Abstracts.
Results: Our systematic search revealed 4505 potential relevant studies, of which 112 studies met the inclusion criteria using 38 carer measures for informal carers of patients with palliative care needs. Psychometric properties were reported in only 46% (n = 52) of the studies, in relation to 24 measures. Where psychometric data were reported, the focus was mainly on internal consistency (n = 45, 87%), construct validity (n = 27, 52%) and/or reliability (n = 14, 27%). Of these, 24 measures, only four (17%) had been formally validated in informal carers in palliative care.
Conclusion: A broad range of outcome measures have been used for informal carers of patients with palliative care needs. Little formal psychometric testing has been undertaken. Furthermore, development and refinement of measures in this field is required.
Background: Caring for relatives with advanced cancer may cause psychological and physical ill health.
Aims: To evaluate the effectiveness of increased support for distressed, informal carers of patients receiving palliative care.
Method: The sample was composed of 271 informal carers who scored over 5 on the 28-item General Health Questionnaire (GHQ–28). The intervention comprised six weekly visits by a trained advisor. Primary outcome was carer distress (GHQ–28) at 4-week, 9-week and 12-week follow-up. Secondary outcomes were carer strain and quality of life, satisfaction with care, and bereavement outcome.
Results: Scores on the GHQ–28 fell below the threshold of 5/6 in a third of participants in each trial arm at any follow-up point. Mean scores in the intervention group were lower at all time points but these differences were not significant. No difference was observed in secondary outcomes. Carers receiving the intervention reported qualitative benefit.
Conclusions: The intervention might have been too brief, and ongoing help might have had accruing benefits. Alternatively, informal carers of patients with cancer may already receive considerable input and the advisor’s help gave little additional advantage; or caring for a dying relative is extremely stressful and no amount of support is going to make it much better.
When caring for an older relative with dementia, family members experience considerable distress and burden. Literature reviews show that supportive group interventions for these caregivers have significant positive effects on improving their distress and quality of life, but not consistent and conclusive. Limited research is found in Asian populations. This study tested the effectiveness of a 12-session bi-weekly mutual support group program for Chinese family caregivers of a relative with dementia in Hong Kong, when compared with standard family support service. An experimental study with pre- and post-test, parallel groups design was conducted. A randomized sample of 78 family caregivers, 39 in each of the experimental and control groups, from one regional dementia care center participated in the study. A protocol was specifically designed by an advanced practice nurse to guide the mutual support group process and the facilitator and peer leader training, based on evidence from the literature on family support group intervention in Western countries. The results of ANOVA tests indicated that the mutual support group participants had significantly greater improvements in distress levels and quality of life than the control group. There were only mild changes in the demands for mental health services in both groups at post-test. These findings support the effectiveness of mutual support groups to offer psychosocial support to Chinese family caregivers in dementia care beyond routine community mental health care.
Relatives play a key role in the daily support and care of cancer patients. This role, however, can negatively affect relatives physically, psychologically, emotionally, and spiritually, challenging their health and well-being. Consequently, this could inhibit relatives’ abilities to continue in their roles as caregivers. Although various studies have examined different interventions for the relatives of cancer patients, no formal research has been published on the role that retreat weekends play in their cancer journeys. In this qualitative study we used semistructured interviews to explore the experiences of 8 relatives who attended a “Skills for Healing Retreat Weekend” in Ontario, Canada. The findings indicate that the retreat, in bringing people together to partake in discussions and activities, fostered a sense of community among the participants. The retreat also had enduring effects, contributing to relatives’ ongoing processes of healing as well as providing them with strategies for coping in their roles as caregivers.
As individuals with significant functional deficits are discharged earlier from the hospital, health care professionals are challenged to develop cost-effective intervention programmes that will assist family members to manage caregiving problems in the home. The literature suggests that social problem-solving can positively influence the physical and psychological well-being of individuals. This paper describes a social problem-solving training procedure provided primarily by telephone to assist family caregivers to manage caregiving issues in the home. (C) 2001 Lippincott Williams & Wilkins.
QUESTIONWhat are the social consequences for informal carers who live with stroke survivors who have urinary incontinence?DESIGNIn-depth interviews analysed by constant comparison.SETTINGHomes of stroke survivors.PARTICIPANTSPurposive sample of 20 carers 51-86 years of age (65% women) who lived in the same house and provided care to stroke survivors with incontinence for 7 months to 18 years without remuneration; most were spouses, partners, or daughters of care recipients (CRs). Carers were recruited from a UK Medical Research Council Incontinence study and a local Family Support Office.METHODSCarers were interviewed for 45-90 minutes on topics including physical role of carer, effect of caring for someone with stroke on life of carer, onset of stroke, health problems related to stroke, urinary incontinence and leakage, and the CR's family. Interviews were tape recorded (except for 1 written record), transcribed verbatim, coded hierarchically, and analysed for themes.MAIN FINDINGSStrategies for becoming [...]
Background: Few reports have been published about differences in perspectives on perceived needs among community-residing people with dementia, their family caregivers, and professionals. The aim of this study was to compare these perspectives.
Method: During 2006 and 2007, one-hundred and fifty two interviews of people with dementia and their caregivers about the needs of the person with dementia were performed by four professionals using The Camberwell Assessment of Need for the Elderly (CANE). Professionals’ views on met and unmet needs of people with dementia were obtained for the total sample, family caregivers’ perspectives were gained for 125 people with dementia, and people with dementia’s views on their own needs were obtained for 125 persons with dementia.
Results: People with dementia reported fewer needs compared with the reports of their caregivers and the professionals. The most frequent unmet needs reported by people with dementia, caregivers and professionals were in the areas of daytime activities, company, and psychological distress; however, people with dementia rated psychological distress as the commonest unmet need.
Conclusions: Since the priorities of people with dementia can be different from those of caregivers and professionals, it is important to consider all perspectives when making care plans. Thus, compliance with treatment of people with dementia and also their quality of life could be potentially improved by a more collaborative partnership with them.
This review considers key areas in primary care regarding the diagnosis of dementia. Issues surrounding assessment, policy and incentives are considered. In addition, the relevance of non-medication approaches for dementia in primary care, which aim to enhance or maintain quality of life by maximising psychological and social function in the context of existing disabilities, is deliberated. Finally, key issues about primary care medication management are considered, and relevant therapeutic strategies with recommendation for a collaborative approach that improve outcomes by linking primary and secondary healthcare services – including general practice and pharmacy – with social care needs are weighed up. A key aspect of such a collaborative approach is to support informal carers in optimising medication.
Most older people living in 24-hour care settings have dementia. We employed qualitative interviews to explore positive and negative aspects of the experience of family carers, staff and people with dementia living in 10 homes in London and West Essex, selected to cover the full range of 24-hour long-term care settings. The interview used open semi-structured questions. We interviewed 21 residents, 17 relatives and 30 staff and five main themes were identified: Privacy and choice; relationships (abuse and vulnerability); activities; physical environment; and expectations of a care environment by carers, should they one day live in long-term care themselves. Despite being no longer responsible for the day-to-day care of the residents there was a continuing level of psychological distress among some relatives. We found that residents with a range of severity of dementia were able to participate. The most striking theme from their interviews was the need for choice. All groups talked about improving lines of communication amongst residents, relatives and staff and about the importance of activities. We recommend that homes should set up formal structures for engaging with user and carer views at all levels. This would mean relatives on the board, and regular meetings for residents, relatives, advocates and staff. This should lead to cultural changes where residents are perceived as individuals and care is provided in a more flexible way. There should be a programme of activities in each 24-hour care setting, which all care staff are given time to implement. These activities need to be tailored to the individual resident rather than the whole group.
Family carers provide more care than the combined efforts of the NHS and social services departments, and their value to the economy is estimated to be around £34 billion a year (Hirst, 1999). However, many carers have health problems of their own. Using three standardised measures to screen for activity limitation (ADLs), depression (GHQ-28) and health related quality of life (HRQoL) (SF36), a study of carers of people aged 75 and over referred consecutively to social services departments in adjacent inner city areas showed a high prevalence of limitations in activities of daily living (ADLs), that a substantial proportion (42 per cent) had GHQ-28 scores high enough to suggest depression and their scores on the SF-36 showed that many carers were low in vitality and tired. Co-resident carers had poorer psychological health and more difficulties with social functioning than non-resident carers, and were older, but were not significantly different in self-reported physical health. Whether carers wanted the cared-for person to remain at home for as long as possible depended on their relationship (spouse or not) and whether the older person was depressed. The carer’s own psychological health was not related to their attitude to institutional care. The study suggests that targeting social care resources on carers showing psychological distress may not reduce downstream expenditure on long-term care.
Objective: To validate a measure of the carer’s perspective of a stroke survivor’s communication in everyday life.
Design: Cross-sectional, interview-based, psychometric study. Setting: A community sample from the northwest of England, UK. Subjects: Fifty-eight carers and 58 stroke survivors with communication problems (aphasia and/or dysarthria) following a stroke within the previous 4—12 months.
Interventions: Administration of the 20-item Carer Communication Outcome after Stroke (Carer COAST) scale, on two occasions, within a two-week period; the 15-item Carers of Older People in Europe (COPE) Index, the patient Communication Outcome after Stroke (COAST) Scale, and collection of demographic and other data relating to the stroke survivor’s disability (Barthel Index), degree of aphasia (Frenchay Aphasia Screening Test) and hospital diagnosis of aphasia/dysarthria.
Main measures: Acceptability (missing values), reliability (internal consistency and test—retest reliability) and construct validity.
Results: Carer COAST showed good acceptability (no incomplete items, sample spread 24—100%), internal consistency and test—retest reliability for the scale (a = 0.94; intraclass correlation (ICC) = 0.91) and its subscales (a = 0.78—0.90; ICC = 0.75—0.87), and indicative evidence on construct validity (Carer COAST, COPE subscales and COAST). There were statistically significant correlations between the communication items of Carer COAST and the negative impact of caregiving (rs = —0.29) and the financial difficulties of caregiving (rs = —0.38).
Conclusions: The Carer COAST scale has considerable potential as a reliable and valid measure of the carer’s perspective on the communication effectiveness of stroke survivors. Intercorrelations with COPE provide specific evidence of the impact of caring for a person with communication difficulties following a stroke.
Caring for a friend or relative with dementia can be burdensome and stressful, and puts carers at increased risk of physical and psychological problems. A number of psychosocial interventions, some delivered by computer, have been developed to support carers. This review evaluates the outcomes of computer-mediated interventions.
PsychINFO, MEDLINE, and CINAHL Plus were searched for papers published between January 2000 and September 2012. Study quality was evaluated using a modified version of Downs and Black's (1998) checklist.
Fourteen empirical studies, evaluating a range of complex, multifaceted interventions, met inclusion criteria. The most commonly measured variables were carer burden/stress and depression. In general, higher quality studies found that interventions did have an effect on these variables. Two higher quality studies also found that anxiety was reduced following intervention. Most studies found that positive aspects of caring were increased through these interventions, as was carer self-efficacy. There were mixed results in relation to social support, and physical aspects of caring did not seem to be affected. Program impact measures indicated general acceptability of these interventions.
The findings support the provision of computer-mediated interventions for carers of people with dementia. Future studies would benefit from design improvements, such as articulating clearly defined aims, having a control group, having adequate statistical power, and measuring a greater range of factors important to carers themselves.
Participation in activity is essential for the psychological well-being of people with dementia. The potential benefits of home-based activity programmes may depend on family carers, but little is known about their experience. This study aimed to elicit carers' experiences of involving the person with dementia in activity. Thirty in-depth interviews (i.e. initial and follow-up) were carried out with 15 co-resident carers of people with dementia who were recruited through local community mental health teams. Data were analysed using a grounded theory method. Overall, findings from initial interviews were taken back to the participants at the follow-up interviews. Five activity patterns were identified, which ranged from their usual activity patterns along a continuum through recognizable, illogical, irresponsible and finally reaching a dispossessed pattern. Carers used particular strategies and experienced particular emotional responses along this continuum. This work highlights the complex, temporal and dynamic nature of family carers' involvement in activity engagement. Clinician's interventions could be enhanced by: (1) recognizing the long-term experience of carers in decision making; (2) understanding the strategies used; (3) allowing carers to talk through and share their experiences in a non-judgmental way; (4) ensuring that carers are happy with any suggested interventions.
This study aims to investigate whether selected social and psychological characteristics of family caregivers of persons with dementia are related to community-based service use in Belgium. Two aspects were distinguished in service utilisation: volume (number of contacts) and diversity (number of services). Within a selected region, dementia caregivers were traced via the detection of persons with dementia known to community health or social services. A probability diagnosis was made with the Geriatric Mental State and the computer algorithm AGECAT. Family caregivers of persons with dementia (N = 168) were interviewed at home by means of a structured questionnaire. Data were analysed with multiple regression analysis. Co-residence, a positive attitude towards home service use, and increased problem-solving coping were found to be direct predictors of increased diversity of services used, whereas a lower burden of behaviour problems, living apart, and increased avoidance coping were found to be direct predictors of increased volume of service use. Care recipients’ behaviour problems and functional status were not found to be related to service use. The results suggest that social and psychological factors have a larger impact on service use in family caregivers of persons with dementia, compared to objective or subjective burden. Interventions to increase awareness of relevant services, to improve attitudes towards their use and support problem-solving coping in family caregivers may be considered to increase the use of appropriate services.
Background: Siblings of children with chronic illness and disabilities are at increased risk of negative psychological effects. Support groups enable them to access psycho-education and social support. Barriers to this can include the distance they have to travel to meet face-to-face. Audio-conferencing, whereby three or more people can connect by telephone in different locations, is an efficient means of groups meeting and warrants exploration in this healthcare context. This study explored the feasibility of audio-conferencing as a method of facilitating sibling support groups
Methods: A longitudinal design was adopted. Participants were six siblings (aged eight to thirteen years) and parents of children with complex neurodevelopmental disorders attending the Centre for Interventional Paediatric Psychopharmacology (CIPP). Four of the eight one-hour weekly sessions were held face-to-face and the other four using audio-conferencing. Pre- and post-intervention questionnaires and interviews were completed and three to six month follow-up interviews were carried out. The sessions were audio-recorded, transcribed and thematic analysis was undertaken.
Results: Audio-conferencing as a form of telemedicine was acceptable to all six participants and was effective in facilitating sibling support groups. Audio-conferencing can overcome geographical barriers to children being able to receive group therapeutic healthcare interventions such as social support and psycho-education. Psychopathology ratings increased post-intervention in some participants. Siblings reported that communication between siblings and their family members increased and siblings’ social network widened.
Conclusions: Audio-conferencing is an acceptable, feasible and effective method of facilitating sibling support groups. Siblings’ clear accounts of neuropsychiatric symptoms render them reliable informants. Systematic assessment of siblings’ needs and strengthened links between Child and Adolescent Mental Health Services, school counsellors and young carers groups are warranted.
That the carers of people with cancer are profoundly affected by their caring role is well established, yet the needs of one particular cohort, i.e. the parents of young adults with cancer, have not been well understood. The majority of carers in this situation are mothers, and it is the impact of the emotional and physical labour entailed by the care of young adults that is the focus of the present paper. Through the analysis of qualitative narrative data contributed by the mothers of young adults with cancer, the aim of this paper is to examine the health effects for women of caring for a young adult son or daughter with a life-threatening illness. The results suggest that there is an impact on the mother's health that results in unspecific, low-grade and chronic psychological and somatic symptoms which the mothers rank as a low priority. The mothers’ attempts to appear to be managing may serve to mask their own health needs from health professionals whose primary concern is the health of the son or daughter. Where psychological distress is admitted, the resulting use of prescribed antidepressants may not be experienced as helpful. The conclusions are that, because of the particular circumstances of caring for a young adult son or daughter with cancer, health professionals’ attention to the mothers’ health throughout the cancer journey may act as a preventative measure for later and more serious ill health.
Aims and objectives. The aim was to study the association between gender, extent and content of care, satisfaction, coping and difficulties in the caregiving situation among older (75+) caregivers and to identify clusters of caregivers. The aim was also to explore psychometrically two instruments assessing satisfaction and difficulties in family caregivers.
Background. Caregiving is a complicated phenomenon. Much of the research has focused on negative aspects, such as the burden, stress and emotional strain. Caregiving is known to affect health negatively for the caregivers. Little is known about satisfaction and motivation in voluntary work, such as informal caregiving, especially among older persons.
Design and methods. Cross-sectional. The sample for this study consisted of 171 informal caregivers aged 75 and over, identified from an age-stratified sample in a postal survey among older people in the southern part of Sweden.
Results. Male caregivers proved to be more satisfied than female caregivers; caregiving had seemingly widened their horizon and had helped them to grow as persons. Based on satisfaction scores, those satisfied had a higher proportion of male caregivers and a significantly higher amount of caregiving hours per week. They used other coping strategies than the respondents in the other cluster, i.e. less satisfied in using more problem-solving strategies.
Conclusions. The instruments tested were appropriate for work in clinical and research settings, although the internal dropout indicates that a shorter version would be more useful. Those who found satisfaction in care used more problem-focused coping strategies and were more often men than women. From a salutogenic point of view, this may give important knowledge about factors that can promote health. The findings indicate that women deserve extra attention as informal caregivers as they did not find caregiving as rewarding as the men did. This may in turn make them less protected against the negative consequences of caregiving.
Relevance to clinical practice. Reinforcing the health-promoting qualities in caregivers who are not feeling well, with women as a particularly vulnerable group, may restrict unnecessary suffering for both the caregiver and the person cared for.
There is a vast body of research on the impact of HIV/AIDS on children, but little which acknowledges the role of children in providing care and support for ailing parents or ageing guardians. There has been a tendency to downplay the active role and agency of young carers, with young carers often represented as victims of damaging circumstances that compromise their psychosocial well-being. To counter-balance this tendency, and to develop the critical trend that views children as social actors, we explore how young carers cope with challenging circumstances, often with skill and ingenuity, drawing on data collected in Western Kenya in 2007. Forty-eight young carers (aged 11–17) used photography and drawing to provide accounts of their coping strategies. They described 240 of the resulting photographs and drawings in writing. In addition, 34 individual interviews and 2 group discussions were conducted with children to explore the findings further and 10 individual interviews with local adults were conducted to elucidate the dynamics between adults and children. Our data revealed that young carers cope by mobilising social support, engaging in income generating activities and constructing positive social identities around their caring roles. We conclude that children's ability to cope is determined by the extent to which they are able to participate in their community and negotiate support from it.
Objectives: To investigate the determinants of satisfaction in caregiving and to compare satisfaction in care-giving amongst carers of demented and non-demented mentally infirm elders; and, assess carer attitudes and concerns, and their implications on care in the community.; Design: Cross-sectional study of informal carers of the elderly referred to a psychogeriatric service, using a questionnaire investigating carer satisfaction (CASI), care-recipient dependency needs, carer burden (CADI), carer concerns and attitudes in relation to caregiving, and the 28-item GHQ.; Setting: Lancashire communities of Fleetwood, Thornton-Cleveleys, Poulton-Le-Fylde, and Over-Wyre.; Results: Carers achieved significant degrees of satisfaction in their role as care-givers; there was no significant difference in the degree of satisfaction gained by carers of the demented and non-demented. The mean CASI score, for carers of the demented and non-demented was 23(5.5) and 24.4 (5.7) respectively (mean difference -2.9; CI -4.6, 0.1; p=0.058). Dissatisfaction in care giving was determined by total burden (CADI) scores, and younger carer age. Emotional distress in carers was weakly inversely correlated with CASI scores (r=-0.21, p=0.042). Concerns expressed by carers, included desire for information on care recipient disability (39.5%) and fear of nursing/residential home placements (43%). Most carers had a generally positive attitude to care giving, in spite of significant degrees of burden to which they were subjected. Conclusions: Carer-related factors, particularly younger age, rather than dependency factors, were determinant of care giving satisfaction. Greater involvement of older persons in care giving should be encouraged, with younger persons assisting if care giving becomes overbearing. Carers require education on care-recipient disabilities and the benefits of care in formal care institutions.
Background Few studies have investigated wellbeing and burden in carers of people with severe multiple sclerosis (PwSMS). Objectives To assess the impact of providing care to PwSMS, and explore variables associated with perceived carer burden. Methods Cross-sectional assessment of health-related quality of life (HRQOL), mood symptoms (Hospital Anxiety and Depression Scale, HADS), and perceived carer burden (22-item Zarit Burden Interview, ZBI) in 78 PwSMS carers. Multivariate linear regression explored carer and PwSMS factors associated with ZBI score. Results Carers (61% women, mean age 60.2years, 53% spouse/partner) had significantly lower HRQOL (all SF-36 scales) than the norm, especially for Role Limitation Emotional/Physical, and Emotional Wellbeing. Sixty-eight percent had pathologic (≥8) Anxiety, and 44% had pathologic Depression scores on HADS. Nonetheless, perceived carer burden was only moderate (mean ZBI score 35.6, SD 14.3). High carer anxiety (p < 0.0001), low household income (p = 0.009), and living with the PwSMS (p = 0.02) were independent predictors of perceived burden. Conclusions Caring for PwSMS has a detrimental effect on HRQOL and psychological wellbeing. High carer anxiety, low economic status, and living in predict higher burden. It is crucial to recognize PwSMS carers as full partners in the provision of care, and to respond to their own needs.
Overall life expectancy for women with intellectual disabilities (ID) is now significantly extended, and many will live long enough to experience menopause. Little is known about how carers support women with ID through this important stage in their lives. This study investigated carer knowledge of how menopause affects women with ID under their care and how they may help them to cope with it. One-to-one interviews were undertaken with 69 carers (7 male/62 female) from a range of backgrounds, all with current responsibility for the care of one or more pre-, peri-, and/or postmenopausal women with ID. Carers reported difficulty in disentangling the psychological and physical consequences of the menopause from behaviors and symptoms arising from other causes. There was general recognition of the transitional importance of menopause and a widespread acknowledgment of the resilience that many women with ID show in coping with it. However, carers emphasized the need for health resources to be better tailored to the women's needs and for more relevant health education training for staff. The authors conclude that additional and new demands are placed on service provision as women with ID live longer. An increased awareness of health issues relating to menopause is needed, as are more appropriate and readily available relevant health education materials for women with ID in middle age.
This review focuses upon women aged 45-60: an under-researched subgroup of the adult female population. Women in mid-life occupy a unique position in the lifespan at the intersection of a number of age-related and lifelong pathways. The lives of these women can be distinguished from those of both older and younger women along a number of important dimensions including their family and working lives, economic situation, general health, and the complexity of their roles both inside and outside the home. Personal and economic changes are common at mid-life as are physical changes; all have particular and distinct implications for women’s emotional and psychological health. The aim of this review is to address a knowledge deficit. Though some evidence exists about the extent of psychological distress in women aged 45-60, far less has been gathered about the causes of such difficulties or the challenges to mental health associated with mid-life experience. The lifespan is routinely conceived as containing a number of discrete stages: women’s lives are characterised by experiences that have overlapping threads and meanings and these combine with age-related issues in ways that warrant focused attention. This review draws evidence from a range of sources to identify the key parameters of mid-life women’s lives. These include: the areas and types of risk to their mental health from a range of sources, the extent of psychological distress, and the ways in which research and policy could reduce the challenges that commonly face women in mid-life and alleviate or prevent mental ill health. It should be noted at the outset that the age group 45-60 years does not map perfectly on to the existing field of research: researchers and national statisticians punctuate the life span in whatever ways they see fit. So, although we have tried to locate research which matches the age span of interest, inevitably we also draw upon the findings of research which only offers a close approximation.
Being the relative of a patient with cancer is often very stressful, and there is a need for information, support, and help for carers. It is also important for the relative to know that the patient receives care of a good quality. This research investigated the relationships between sociodemographic characteristics, illness related concerns and psychological symptom scores of relatives of the patients with cancer in an inpatient oncology clinic of the GATA. A Questionnaire and Symptom Distress Check List (SCL-90-R) was administered to 106 relatives of in-patients and statistically significant relationships were found between the following characteristics and psychological symptom scores: sex, education level, duration of stay in hospital, having emotional problems and having financial problems. It was established that most problems of relatives were psychological and financial (p<0.05). Cancer is still a great source of fear and it is evident that offering psychosocial support at a professional level in addition to medical treatment will yield more favorable results for both patients and their relatives.
Aim To investigate the impact of caring for a parent on the psychosocial development of the young person. Methods A total of 20 young carers and 20 non-caregiving peers, aged 11-18 years, were compared on self-report measures of life satisfaction, self-esteem, and behavioural strengths and difficulties. Parental reports on their child's behaviour were obtained and measured. Results Young carers reported lower life satisfaction and self-esteem compared with non-caregiving peers, and their parents rated them as having more difficulties with peer relationships and more emotional symptoms. There was no evidence of more pro-social behaviour on the part of young carers. Conclusions Caregiving has a negative effect on young people overall; improved support of and more research around young carers are required.
Caring for an ill or disabled relative is a life experience shared by many women. Based on data from a representative sample of women in Israel, this study examined the demographic, employment, and health characteristics of women caregivers, focusing on the extent of care provided and its effect on the caregiver's physical and mental health. Using the conceptual framework of caregiving-related stress, we compared women who care for a parent, and women who care for another relative. The study found more instrumental difficulties, which lead to greater burden, among women who care for a disabled relative who is not a parent. Furthermore, larger proportions of women caring for a disabled relative who is not a parent report depressive mood symptoms, poor health status, and the need for psychological counseling. The findings suggest that formal service providers, chiefly social workers, may better support women caregivers once they are aware of the needs arising from disparate contexts of care.
Objective: Demonstration studies of community treatment as an alternative to hospitalization have reported high degrees of satisfaction by family carers. We aimed to determine the extent of carer preference for hospital versus community treatment for acute mental illness in a routine setting where carers had experienced both service types.
Method: Patients who had contact with both a hospital inpatient service and a Crisis Assessment and Treatment (CAT) team within the previous 5 years were identified. Seventy-seven family carers of these patients completed a questionnaire which identified their preference for services, and psychological and demographic variables likely to be predictive of their choice.
Results: Only half the carers preferred a CAT service to treat their relative in the event of a future relapse. Psychological variables were better predictors of choice than were demographic variables.
Conclusions: The proportion of caregivers who prefer community treatment for acute psychosis may be smaller than previously thought. The lower carer satisfaction found here may be associated with the short-term interventions of Victoria's CAT teams, the severity of acute relapses and the duration of the patient's mental health problem.
Objectives To compare the prevalence and predictors of caregiver esteem and burden during two different stages of care recipients' illnesses-advanced chronic illness and the last year of life. Design Longitudinal, observational cohort study. Setting Community sample recruited from outpatient clinics at Duke University and Durham Veterans Affairs Medical Centers. Participants Individuals with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease and their primary caregiver, retrospectively coded as chronic-illness (n = 62) or end-of-life (EOL; n = 62) care recipient-caregiver dyads. Measurements Caregiver experience was measured monthly using the Caregiver Reaction Assessment, which includes caregiver esteem and four domains of burden: schedule, health, family, and finances. Results During chronic illness and at the end of life, high caregiver esteem was almost universal (95%); more than 25% of the sample reported health, family, and financial burden. Schedule burden was the most prevalent form of burden; EOL caregivers (58%) experienced it more frequently than chronic-illness caregivers (32%). Caregiver esteem and all dimensions of burden were relatively stable over 1 year. Few factors were associated with burden. Conclusion Caregiver experience is relatively stable over 1 year and similar in caregivers of individuals in the last year of life and those earlier in the course of chronic illness. Schedule burden stands out as most prevalent and variable among dimensions of experience. Because prevalence of burden is not specific to stage of illness and is relatively stable over time, multidisciplinary healthcare teams should assess caregiver burden and refer burdened caregivers to supportive resources early in the course of chronic illness.
Stroke is a condition that affects both patients and family members who provide care and support. Because stroke is an unexpected traumatic event that suddenly forces family members into a caregiving role, caregivers often experience an overwhelming sense of burden, depression, and isolation; a decline in physical and mental health; and reduced quality of life. Caregiver health is inextricably linked to a stroke survivor's physical, cognitive, and psychological recovery. Evidence suggests that informational interventions alone are not as effective in meeting the complex needs of stroke caregivers as interventions that combine information with other support services. This article discusses issues related to stroke caregiving and proposes comprehensive strategies designed to meet the poststroke recovery needs of both patients and caregivers. Suggested strategies include a comprehensive assessment specific to caregiver needs, skills, and resources and case management services designed to provide continuity of care across the stroke-recovery trajectory.
This paper explores the daily experiences and occupational needs of family carers of people who were dying, with particular reference to their daily routines and ability to undertake other varied activities during the period of care. The impact of the caring experience on these occupations was then examined to determine how, and if, these occupational needs were addressed in the community using potential and available services. An exploratory approach using grounded theory was employed to examine these experiences. Participants were recruited from metropolitan (n = 10) and rural (n = 4) locations across Western Australia between February and June 2009, using a purposive sampling method. A semi-structured interview guide was developed following consultation with the literature, expert opinion and piloting. Interviews were conducted in participants’ homes and questions were asked about their experiences as a carer including routines, engagement in usual activities and the impact of the caring role on their daily life during and after the period of care. Each interview was transcribed verbatim and analysed to determine potential themes. Two important themes were identified: (1) Carers experienced disengagement and deprivation from their usual occupations during and after the period of care; and (2) Participants described significant disempowerment in their role as carer. Carers are ‘doubly disadvantaged’ as a result of their caring role; they are unable to participate in their usual occupations and they are not recognised for their contributions as carers. Carers experienced disengagement and deprivation from their usual occupations, contributing to physical, psychological and emotional difficulties and this may result in long term consequences for health and well-being. In addition, the current services and support available for carers in the community are deemed inadequate; placing further stress on a health care system which needs to cope with increasing demands as a result of the ageing population in Australia.
Objective: The need for information about the disease and coping with the consequences, as well as on available care and welfare services, is frequently unmet in people with dementia and their carers. To provide carers of community-dwelling people with dementia with tailored information, the DEMentia-specific dynamic interactive social chart (DEM-DISC) was developed. The impact on the daily life of people with dementia and their carers, the user friendliness and usefulness of a first prototype of DEM-DISC was evaluated.
Method: DEM-DISC was tested among informal carers in a pretest–posttest control group design. Fourteen informal carers could access DEM-DISC at home during a two month period. Fourteen controls did not have access to DEM-DISC. Data were collected by separate interviews with people with dementia and carers at pretest and posttest, by means of digital logging, short telephone interviews, and a bottleneck checklist during the intervention period.
Results: People with dementia and informal carers reported more met and less unmet needs after DEM-DISC use and carers in the experimental group reported higher levels of competence than controls. Although they were not explicitly satisfied with this first prototype of DEM-DISC, carers found DEM-DISC easy to learn and relatively user friendly. Carers acknowledged the system's benefits.
Conclusion: The positive effects might be caused by the systematic and tailored individual way of information provisioning by DEM-DISC. It would be worthwhile to continue to develop DEM-DISC and to conduct randomized trials on the impact on patients and carers as well as the impact on nursing home admission and healthcare expenditure.
Objectives: To determine and prioritise what information dementia caregivers wish to know at the time of diagnosis and later on in the illness, and in what form this information should be presented.
Method: 100 carers were recruited from community mental health teams (CMHT) and a memory clinic (MC). A semi-structured Carer Interview was administered covering possible symptoms and management.
Results: Carers requested as much information as possible. There was no significant difference between CMHTs and the MC. After carers prioritised the information they wished to receive, we proposed a ‘rule of threes’. At diagnosis, carers want information about what dementia is, medications available and behavioural and psychiatric symptoms of dementia. In an early follow-up appointment, they want information about services, the course of the illness and what to do in a crisis. In a later follow-up appointment, they want information about support groups, benefits, and financial and legal issues. At a later stage, they want information about psychological therapies, the effects of the illness on carers and complementary treatments. Most carers wish to receive information from a health professional, backed up by written information.
Conclusions: The ‘rule of threes’ enables health professionals to make informed decisions about primacy of information and strategies to prevent carers becoming overloaded. Information should also be provided in written form and from support groups. Copyright © 2003 John Wiley & Sons, Ltd.
Background: Informal (dementia) care has economic consequences throughout the health care system. Whilst the health and wellbeing of the care recipient might improve, the health of the caregiver might also change, typically for the worse. Therefore, this analysis aims to examine the association between caregiving intensity and caregivers’ health and health care utilization.
Data and Methods: The empirical analysis is based on cross-sectional survey data generated by the European Project “RightTimePlaceCare” (RTPC). RTPC was a prospective cohort study conducted in eight European countries (Estonia, Finland, France, Germany, Netherlands, Sweden, Spain and the United Kingdom). The health status of 1029 informal caregivers was assessed by measures of psychological wellbeing (GHQ-12) and self-rated overall health (EQ-VAS). Health care utilization was measured by (i) the self-stated proportion of health care use influenced by caregiving and (ii) the probability of at least one visit to a general practitioner within in the last 30 days. The association between caregiving intensity and caregivers’ health and health care utilization was assessed by descriptive analysis and multivariate OLS- and probit-models.
Results: A higher amount of informal care was significantly related to negative health outcomes for informal caregivers. On average, one additional hour of informal caregiving per day was associated with a decrease of psychological wellbeing and self-rated overall health by 0.16 and 0.42 index points respectively. Furthermore, one more hour of informal caregiving corresponded with increased self-stated proportion of health care use by 0.56 percentage points. However, the claim of increased health care demand due to caregiving as measured by GP visits was only partly confirmed.
Conclusion: When evaluating the full economic effect of informal care, the impact of providing care on caregivers’ health and health care utilization has to be taken into account.
Background: There is increasing recognition that psychological interventions for people with dementia and their carers are of value. Neuropsychological considerations and an exploration of the literature point towards the potential benefits of non-verbal, body-oriented interventions to work psychotherapeutically with people as their cognitive abilities deteriorate.
Method: A total of 18 people (11 people with moderate-to-severe dementia and 7 family carers) consented to partake. Measures were completed before and after the group therapy (45 minutes once a week for 10 weeks). Weekly progress monitoring sheets were completed and participants were interviewed after the group for their views.
Results: The therapeutic intervention had a positive impact on participants’ general well-being and mood, including improving people’s concentration and communication with others.
Discussion: The results of the pilot study support using therapeutic circle dance as a body-oriented psychological intervention for people with dementia and their carers. Further studies with more stringent methodologies in larger samples are required.
Informal carers of home palliative care patients have high unmet needs. However, interventions for carers are few. This research-based short-term group intervention addresses the information and support needs of carers. Multiprofessional informal teaching is combined with peer support. The intervention was designed by integrating the findings from a qualitative study and the evidence on needs and interventions, in order to address the key i