Carer Depression Research Articles

The role of the family in supporting the self-management of chronic conditions: A qualitative systematic review.

To explore the contribution of family members in promoting and supporting the self-management of chronic conditions amongst adult family members. The prevalence of chronic disease continues to grow globally. The role of the family in chronic condition management and support for self-management has received little attention. A systematic review of qualitative literature using the Joanna Briggs Institute approach for qualitative systematic reviews. Ovid (MEDLINE, CINAHL and PsycINFO) were searched for the period of database inception-2016. The QARI (Qualitative Assessment and Review Instrument) critical appraisal instrument was used to assess the quality of each study. Using the Joanna Briggs Institute-QARI data extraction tool, findings related to the family role in the self-management of chronic conditions were extracted and each finding rated according to Joanna Briggs Institute-QARI levels of credibility. Findings were categorised and synthesised to produce a final set of aggregated findings. Families were key in constructing an environment that was conducive to family engagement and support. Adaptation within the family included maintaining cohesion between family members, normalisation and contextualisation of the chronic condition. Whilst evidence on the value of the family in promoting positive health outcomes is clear, research on how families can specifically support the self-management of chronic conditions is emerging. Family adaptability has been found to be the most powerful predictor of carer depression. Families may need support to change their home and family organisation to adapt to the challenges they face overtime. Change in roles and subsequent adaptation can be stressful, even for those family members at a distance. Nurses working in hospital and community settings can play an important role in assessing how families are adapting to living with chronic illness and to explore strategies to cope with challenges in the home setting.

Care of the older person

In this series, commentaries in evidence-based nursing from the past 2 years from a specific nursing theme are brought together and highlights are discussed. The topic for this edition is...

Association between depression in carers and malnutrition in children aged 6 months to 5 years

BackgroundChildhood malnutrition is an important risk factor for child mortality and underlies close to 50% of child deaths worldwide. Previous studies have found an association between maternal depression and child malnutrition, but it is not known whether this association exists in Botswana. In addition, previous studies excluded non-maternal primary caregivers (PCGs). It is unclear whether the association between primary caregiver depression and child malnutrition remains when non-maternal PCGs are included.AimThe aim of this study was to determine if there is an association between PCG depression and malnutrition in children aged between 6 months and 5 years in Mahalapye, Botswana.SettingThe study was conducted in the child welfare clinics of Xhosa and Airstrip clinics, two primary health care facilities in Mahalapye, Botswana.MethodsThis was a case control study. Cases were malnourished children aged between 6 months and 5 years, and controls were non-malnourished children matched for age and gender. The outcome of interest was depression in the PCGs of the cases and controls, which was assessed using the Patient Health Questionnaire 9 (PHQ 9), a depression screening tool.ResultsFrom a sample of 171 children, 84 of whom were malnourished, we found that the malnourished children were significantly more likely to have depressed PCGs (odds ratio = 4.33; 95% CI: 1.89, 9.89) than non-malnourished children in the 6-month to 5-year age group; the PCGs of malnourished children also had lower educational status.ConclusionThis study found a significant association between PCG depression and child malnutrition.

Taking care of teenagers, taking care of me: Profiling parental caregiving burden and activity restriction in a sample of Australian parents.

The current study extends the Activity Restriction Model of Depressed Affect by exploring the relationship between parental caregiving burden, activity restriction, and depressive symptoms. It investigated the mediating role of restriction in three types of activities (daily routine, personal control, and social) in the relationship between parental caregiving burden and carer depression. Respondents (n=203, Meanage =45.45years, standard deviation=7.81, females=84.7%) were parent carers of a young person with mental illness and based in Australia. They completed a set of measures assessing caregiving burden, participation in daily routine, personal control and social activities, and depressive symptoms. A multiple mediation analysis revealed that restriction of daily routine, personal control, and social activities indirectly mediated the relationship between parental caregiving burden and parent carers' symptoms of depression. A latent profile analysis suggested an optimal three-profile solution. As predicted, profile membership distinguished parent carers on depressive symptoms ranging from normal to severe levels based on participation in the specific activities. Our results suggest a typology of parent carers perceiving differential levels of caregiving burden and activity restriction. Strategies addressing these specific areas provide preventative and promotion measures to optimize carer mental health and well-being.

Cognitive impairment in Parkinson's disease: impact on quality of life of carers.

BackgroundThe quality of life (QoL) of informal caregivers of people with Parkinson's disease (PD) (PwP) can be affected by the caring role. Because of cognitive symptoms and diminished activities of daily living, in addition to the management of motor symptoms, carers of PwP and cognitive impairment may experience increased levels of burden and poorer QoL compared with carers of PwP without cognitive impairment. This study aimed to investigate the impact of cognitive impairment in PD upon QoL of carers.MethodsApproximately 36 months after diagnosis, 66 dyadic couples of PwP and carers completed assessments. PwP completed a schedule of neuropsychological assessments and QoL measures; carers of PwP completed demographic questionnaires and assessments of QoL. Factor scores of attention, memory/executive function and global cognition, as derived by principal component analysis, were used to evaluate cognitive domains.ResultsHierarchical regression analysis found lower Montreal Cognitive Assessment was a significant independent predictor of poorer carer QoL, in addition to number of hours spent caregiving, carer depression and PD motor severity. Attentional deficits accounted for the largest proportion of variance of carer QoL. Carers of PwP and dementia (n = 9) had significantly poorer QoL scores compared with PwP and mild cognitive impairment (n = 18) or normal cognition (n = 39) carers (p < 0.01).ConclusionsAttentional deficits were the strongest predictor of carer QoL compared with other cognitive predictors. Carers for those with PD dementia reported the poorest QoL. Interventions such as respite or cognitive behavioural therapy to improve mood and self‐efficacy in carers may improve carer QoL. © 2016 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons, Ltd.

The effects of caregiver and household HIV on child development: a community-based longitudinal study of young children.

Many studies that document child outcomes in the context of parental HIV - which has been established as a risk factor for child development - focus on older children/adolescents. Studies also concentrate on the status of the primary caregiver, not other household members who might be infected. This study examined the effects of caregiver and household HIV on child development (4-13 years) in South Africa and Malawi (2011-2014). Data were gathered from 989 children and their primary caregivers at baseline and repeated at 12-15 months follow-up (86.5% follow-up rate). Only caregivers of a single child and caregiver/child dyads without missing data were included, providing a sample of 808 dyads for analysis. Children were divided into three groups according to caregiver-reported HIV burden: having an HIV-positive primary caregiver (19.8%), having HIV in the household (14.2%) or no HIV (66%). The HIV burden was positively associated with an array of negative child outcomes, often mediated by caregiver depression levels. Family HIV burden at baseline affected child behavioural problems at follow-up indirectly through carer depression (B = 0.02; CI = 0.003, 0.06). Internalizing (B = 0.02; CI = 0.002, 0.05) and externalizing problems at follow-up (B = 0.01; CI = 0.0002, 0.03) were also indirectly affected by family HIV burden through caregiver depression. The data suggest that family HIV can affect child development, emphasizing the important role of depression in the pathway to such an effect. Community-based interventions directed at alleviating parental depression in the presence of HIV may help to interrupt the cycle of family HIV and adverse child outcomes.

Caregiver strain following critical care discharge: An exploratory evaluation

ObjectiveThe objective of this exploratory evaluation was to understand the impact of critical care survivorship on caregivers. DesignFamily members who attended a quality improvement initiative within our critical care unit were asked to complete 4 questionnaires. SettingThe setting for this study was a 20-bedded mixed critical care unit in a large teaching hospital in Scotland. Data were collected as a part of an evaluation of a quality improvement initiative. ParticipantsThirty-six carers completed the questionnaire set. Measurements and main resultsA total of 53% of caregivers suffered significant strain. Poor quality of life in the patient was significantly associated with higher caregiver strain (P= .006). Anxiety was present in 69% of caregivers. Depression was present in 56% of caregivers, with a significant association between carer strain and depression (P< .001).Those caregivers who were defined as being strained also had significantly higher Insomnia Severity Index scores than those without carers strain (P= .007). ConclusionThis evaluation has demonstrated that there is a significant burden for caregivers of critical care survivors. Furthermore, they reported high levels of posttraumatic stress disorder, anxiety, depression, and insomnia. Future work on rehabilitation from critical care should focus on the inclusion of caregivers.

A preliminary evaluation of a single session behavioural activation intervention to improve well‐being and prevent depression in carers

BackgroundMajor depressive disorder is predicted to be the lead cause of disease burden by 2030. Despite evidence suggesting that major depressive disorder can be prevented, little attention has been paid to developing interventions for this purpose. As research suggests that high levels of subjective well‐being may protect against depression, an intervention that can enhance and maintain subjective well‐being may assist in preventing major depressive disorder. Behavioural activation (BA) is a promising intervention that has been observed to both effectively treat depression and also enhance subjective well‐being, even in a single session.MethodA randomised control design was used to investigate the efficacy of a single session of BA to boost well‐being and reduce distress in a community sample of carers (N = 13), who may be at increased risk of major depressive disorder. Outcome measures assessed symptoms of depression, anxiety, stress, and well‐being and the lifestyle factors of perceived environmental reward and the extent to which individuals lived in accordance with their personal values.ResultsGeneralised linear mixed modelling revealed significant group × time interactions for stress scores and valued living, indicating a treatment effect on these outcomes.ConclusionsFindings provide preliminary support for the effectiveness of a single session BA intervention to improve outcomes of carers.

Group cognitive behavioural therapy for stroke survivors with depression and their carers

Background: Depression in stroke survivors is common, leads to poorer outcomes and often not treated. A group cognitive behavioural therapy (CBT) program (Brainstorm) for stroke survivors with depression, and their carers has been running as part of usual care since 2007.Objective: To evaluate the implementation and acceptability of Brainstorm, a closed group intervention consisting of up to 10 sessions of education, activity planning, problem solving and thought challenging.Methods: Participating stroke survivors and their carers complete assessment measures at baseline, post-treatment and 1-month and 6-months follow-up. A mixed models for repeated measures data was conducted with depression and anxiety scores for stroke survivors (Beck Depression Inventory-II; Hospital Anxiety and Depression Scale) and the assessment of depression, anxiety and carer burden for carers. Acceptability was assessed by session attendance and written and open participant feedback upon completion of the program.Results: Forty-eight community dwelling stroke survivors and 34 carers attended Brainstorm, with a median attendance of 88% of sessions. Follow-up assessments were completed by 77% (post-treatment), 46% (1-month) and 38% (6-month) of stroke survivors. Stroke survivors’ depression scores decreased from baseline to post-treatment (p<.001); maintained at 1-month (p<.001) but not at 6-month (p=.056). Anxiety scores decreased between baseline and 1-month (p=.013). Carer burden, depression and anxiety scores at 1-month and 6-month follow-up, for carers, were all reduced when compared with baseline (p<.05).Conclusion: The Brainstorm group intervention for depression in stroke survivors appears to have been effectively implemented and is acceptable to stroke survivors and carers.

Effectiveness of START psychological intervention in reducing abuse by dementia family carers: randomized controlled trial.

Family carers of people with dementia frequently report acting abusively toward them and carer psychological morbidity predicts this. We investigated whether START (STrAtegies for RelaTives), a psychological intervention which reduces depression and anxiety in family carers also reduces abusive behavior in carers of people living in their own homes. We also explored the longitudinal course of carer abusive behavior over two year. We included self-identified family carers who gave support at least weekly to people with dementia referred in the previous year to three UK mental health services and a neurological dementia service. We randomly assigned these carers to START, an eight-session, manual-based coping intervention, or treatment as usual (TAU). Carer abusive behavior (Modified Conflict Tactic Scale (MCTS) score ≥2 representing significant abuse) was assessed at baseline, 4, 8, 12, and 24 months. We recruited 260 carers, 173 to START and 87 to TAU. There was no evidence that abusive behavior levels differed between randomization groups or changed over time. A quarter of carers still reported significant abuse after two years, but those not acting abusively at baseline did not become abusive. There was no evidence that START, which reduced carer anxiety and depression, reduced carer abusive behavior. For ethical reasons, we frequently intervened to manage concerning abuse reported in both groups, which may have disguised an intervention effect. Future dementia research should include elder abuse as an outcome, and consider carefully how to manage detected abuse.

Unmet needs and depression among carers of people newly diagnosed with cancer

AimsThe aims of this analysis were to examine levels of unmet needs and depression among carers of people newly diagnosed with cancer and to identify groups who may be at higher risk, by examining relationships with demographic characteristics. MethodsOne hundred and fifty dyads of people newly diagnosed with cancer and their carers, aged 18years and older, were recruited from four Australian hospitals. People with cancer receiving adjuvant cancer treatment with curative intent, were eligible to participate. Carers completed the Supportive Care Needs Survey-Partners & Caregivers (SCNS-P&C45), and both carers and patients completed the Centre of Epidemiologic-Depression Scale (CES-D). ResultsOverall, 57% of carers reported at least one, 37% at least three, 31% at least five, and 15% at least 10 unmet needs; the most commonly endorsed unmet needs were in the domains of information and health care service needs. Thirty percent of carers and 36% of patients were at risk of clinical depression. A weak to moderate positive relationship was observed between unmet needs and carer depression (r=0.30, p<0.001). Carer levels of unmet needs were significantly associated with carer age, hospital type, treatment type, cancer type, living situation, relationship status (in both uni- and multi-factor analysis); person with cancer age and carer level of education (in unifactor analysis only); but not with carer gender or patient gender (in both uni- and multi-factor analyses). ConclusionFindings highlight the importance of developing tailored programmes to systematically assist carers who are supporting patients through the early stages of cancer treatment.

Factors associated with depression in older carers.

Depression is an adverse outcome frequently seen in carers. With the increasing ageing population and reliance on informal carers, this study aims to identify factors associated with depression in carers in the older age group, using factors that have not been previously investigated. We conducted a cross-sectional analysis of 202 older carers using the Geriatric Depression scale, demographics, personality traits, attitudes to ageing and other carer characteristics. Increased hours spent caring and higher levels of neuroticism were all factors associated with depression. The care-recipient diagnosis, other personality traits, attitudes to ageing, leisure-physical activity (PA) and domestic-PA were not significantly associated with depression. These findings have important implications for interventions to target at-risk carers.

The adverse mental health of carers: Does the patient diagnosis play a role?

ObjectivesThe adverse mental health effects of caring have been studied, frequently in carers of people with dementia. Less is known about the mental health of carers of people with other conditions. This study compared depression and burden in older carers looking after people with a variety of conditions. Design, methods and measuresOver 200 older carers interested in participating in the Improving Mood through Physical Activity in Carers and Care-recipient Trial were included in this cross-sectional study, using the Geriatric Depression Scale (GDS) and Zarit Burden Inventory (ZBI). ResultsOverall there were 43% of carers who were depressed and a quarter of them reported moderate-to-severe burden. Carers of people with physical conditions had the highest levels of depression and burden. Patient diagnosis, hours spent caring, and burden were associated with depression, while hours spent caring and carer depression were associated with burden. These factors contributed approximately 25–30% of the variance of depression and burden, respectively. ConclusionsThe diagnosis of the patient was a factor associated with depression, and older carers of people with physical conditions were at the highest risk. It is important for clinicians to assess the mental health of all carers, regardless of the patient diagnosis.

Assessment of the level of care-burden in informal caregivers of patients with dementia

Background Worldwide, the incidence and prevalence of dementia is currently increasing. Dementia is associated with significant disability due to cognitive impairment, and sufferers often become dependent on their carers. Close family members often provide care for persons suffering from dementia, particularly in the developing world. This care-burden is associated with many consequences such as carer depression, elder abuse and premature placement of the patients in institutions. The consequences of care-burden have not been studied in depth in Sri Lanka. A better understanding of care-burden would be helpful to develop interventions to support carers as well as minimise the economic burden to the state Objectives The objectives of this study were to describe the level of care-burden in carers of patients with dementia, and to explore possible associations between the care-burden and other variables such as socio demographic factors and psychiatric morbidity. Method A total of 77 carers were included in the study. The locally adapted and translated Zarit Burden Interview (ZBI) was used to assess for care-burden, and participants were also clinically assessed for the presence of depression based on the Diagnostic and Statistical Manual – version IV (DSM IV) criteria for a major depressive episode. Socio-demographic details were gathered via a questionnaire. Conclusion Over one quarter of carers were experiencing a moderate to severe level of care-burden, and almost half reported mild to moderate care-burden. The level of burden increased significantly with increasing age, and a proportion of participants were also depressed. Further large scale, population based research is needed in Sri Lanka, to explore these associations further. The Sri Lanka Journal of Psychiatry Vol 6(1):4-8

Systematic review and meta-analysis of the impact of carer stress on subsequent institutionalisation of community-dwelling older people.

BackgroundIn the caregiving literature there is a common assertion that a higher level of carer stress is a critical determinant of premature ending of homecare. However, this contention has not been systematically assessed. We therefore systematically reviewed and meta-analysed the prospective association between various forms of carer stress and subsequent institutionalisation of community-dwelling older people.MethodsSystematic literature search of prospective studies measuring carer stress at baseline and institutionalisation at follow-up. Given substantial interchangeability in the measurement of carer stress, we included a wide number of exposure measures, namely: carer stress, burden, depression, distress, anxiety, burnout, and strain. Institutionalisation included both acute and long-term care utilisation. The standardised mean difference between stressed and non-stressed carers was the primary measure of effect. We assessed study quality with the Crowe Critical Appraisal Tool (CCAT). Pre-planned sensitivity analysis included examination of estimates according to study size; decade published; study quality according to quartiles of CCAT scores; population; follow-up period; study design and impact of adjusted or unadjusted estimates.ResultsThe search yielded 6,963 articles. After exclusions, we analysed data from 54 datasets. The meta-analysis found that while carer stress has a significant effect on subsequent institutionalisation of care recipients, the overall effect size was negligible (SMD=0·05, 95% CI=0·04–0·07). Sensitivity analyses found that, the effect size was higher for measurements of stress than for other measures, though still relatively small (SMD=0·23, 95% CI=0·09–0·38). Thus, whether analysing the association between carer stress, burden, distress, or depression with either acute or long-term care, the effect size remains small to negligible. Concurrently, we found estimates reduce over time and were smaller with larger studies and those of higher quality, according to the CCAT scores.ConclusionDespite strong statements to the contrary, it appears that the effect of carer stress on subsequent care recipient institutionalisation is small to negligible. The current findings point to a biased literature, with significant small study effects. The results suggest a need to re-evaluate the degree to which carer stress predicts premature ending of home care. Concurrently, other factors may be more crucial in institutional placement than carer stress and should be investigated.

Specialist nursing and community support for the carers of people with dementia living at home: an evidence synthesis.

Specialist nurses are one way of providing support for family carers of people with dementia, but relatively little is known about what these roles achieve, or if they are more effective than roles that do not require a clinical qualification. The aim of this review was to synthesise the literature on the scope and effectiveness of specialist nurses, known as Admiral Nurses, and set this evidence in the context of other community-based initiatives to support family carers of people with dementia. We undertook a systematic review of the literature relating to the scope and effectiveness of Admiral Nurses and a review of reviews of interventions to support the family carers of people with dementia. To identify studies, we searched electronic databases, undertook lateral searches and contacted experts. Searches were undertaken in November 2012. Results are reported narratively with key themes relating to Admiral Nurses identified using thematic synthesis. We included 33 items relating to Admiral Nurses (10 classified as research) and 11 reviews evaluating community-based support for carers of people with dementia. There has been little work to evaluate specific interventions provided by Admiral Nurses, but three overarching thematic categories were identified: (i) relational support, (ii) co-ordinating and personalising support and (iii) challenges and threats to the provision of services by Admiral Nurses. There was an absence of clearly articulated goals and service delivery was subject to needs of the host organisation and the local area. The reviews of community-based support for carers of people with dementia included 155 studies but, in general, evidence that interventions reduced caregiver depression or burden was weak, although psychosocial and educational interventions may reduce depression in carers. Community support for carers of people with dementia, such as that provided by Admiral Nurses, is valued by family carers, but the impact of such initiatives is not clearly established.

Case management approaches to home support for people with dementia.

Case management approaches to home support for people with dementia.

What Do Rural Dementia Caregivers Find Stressful?

This study aimed to determine what carers of people with dementia in rural Australia found stressful in their caring role. It was part of a broader mixed methods study exploring carer depression, anxiety and stress and utilisation of formal community support services. The findings suggest that carer stress varies among individuals, but that a predominant source of stress is the unremitting burden experienced when caring for someone with dementia. Improved utilisation of support services in rural areas and tailoring services to individual carers dependent on the source of stress is recommended.

Long-term clinical and cost-effectiveness of psychological intervention for family carers of people with dementia: a single-blind, randomised, controlled trial

Two-thirds of people with dementia live at home supported mainly by family carers. These carers frequently develop clinical depression or anxiety, which predicts care breakdown. We aimed to assess the clinical effectiveness (long-term reduction of depression and anxiety symptoms in family carers) and cost-effectiveness of a psychological intervention called START (STrAtegies for RelaTives). We did a randomised, parallel-group trial with masked outcome assessments in three UK mental-health services and one neurological-outpatient dementia service. We included self-identified family carers of people with dementia who had been referred in the previous year and gave support at least once per week to the person with dementia. We randomly assigned these carers, via an online computer-generated randomisation system from an independent clinical trials unit, to either START, an 8-session, manual-based coping intervention delivered by supervised psychology graduates, or treatment as usual (TAU). The primary long-term outcomes were affective symptoms (Hospital Anxiety and Depression Scale total score [HADS-T]) 2 years after randomisation and cost-effectiveness (health and social care perspectives) over 24 months. Analysis was by intention to treat, excluding carers with data missing at both 12 and 24 months. This trial is registered ISCTRN70017938. From November 4, 2009, to June 8, 2011, we recruited 260 carers. 173 carers were randomly assigned to START and 87 to TAU. Of these 260 participants, 209 (80%) were included in the clinical efficacy analysis (140 START, 69 TAU). At 24 months, compared with TAU the START group was significantly better for HADS-T (mean difference -2·58 points, 95% CI -4·26 to -0·90; p=0·003). The intervention is cost effective for both carers and patients (67% probability of cost-effectiveness at the £20 000 per QALY willingness-to-pay threshold, and 70% at the £30 000 threshold). START is clinically effective, improving carer mood and anxiety levels for 2 years. Carers in the control TAU group were seven times more likely to have clinically significant depression than those receiving START. START is cost effective with respect to carer and patient outcomes, and National Institute for Health and Care Excellence (NICE) thresholds. The number of people with dementia is rapidly growing, and policy frameworks assume that their families will remain the frontline providers of (unpaid) support. This cost-neutral intervention, which substantially improves family-carers' mental health and quality of life, should therefore be widely available. National Institute for Health Research Health Technology Assessment programme 08/14/06.

Service utilisation by carers of people with dementia in rural Victoria.

To explore the use of community and dementia-specific services by informal carers caring for someone with dementia in a rural setting. 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. 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. 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.