Discuss about the Support Group and Individual Counseling.
Dementia is a disease condition that is regarded as both physical and mental illness and research shows that both the burden and quality of life is worst for caregivers who take care of patients with both physical and mental illness (Settineri et al., 2014). Paid caregivers or formal caregivers of dementia patient plays a vital role in patient-centered care and meeting daily life needs of patient. They are involved in administering medication, managing symptoms of patient, facilitation communication and providing emotional support to patient. Although the number of formal caregivers of dementia patient has increased, however the number of caregivers suffering from care giving burden and depression has also increased (Liang et al., 2018). Lot of attention has been given to care giving burden and psychosocial issues for informal caregivers of dementia patient, however analyzing the extent of impact for formal caregiver has also become important as they are also vulnerable to poor health outcome.
Various research studies have investigated about the characteristics of care giving burden and its impact on health of caregivers. The studies have given evidence on low efficacy, poor physical health and subjective well being in dementia caregivers compared to other caregivers. Ali & Bokharey (2015) explored lived experience of caregivers of dementia patient by means of interpretative phenomenological analysis. The analysis of interview transcript of dementia caregiver stated that participants found care giving as troublesome and affecting their social and familial life. These were indication of cognitive distortion in-patient. The second theme of physical symptom gave the indication that symptoms of fatigue lack of motivation and sleep disturbance is common in caregivers. Hence, the study gave indication about cognitive and physical impact on caregivers of dementia patient. Ornstein & Gaugler (2012) also explained that behavioral and psychological symptoms of dementia (BPSDs) such as aggression, depression and sleep disturbance have negative impact on caregivers.
While looking at the research problem of caregiver burden, it is essential that specific correlated and potential causes of burden and its adverse impact is identified. Mohamed et al. (2010) explored the relationship between burden and depression among caregivers to patient and caregiver characteristics. The study directly measured caregiver burden, depressive symptom in caregiver and symptoms related to distress. Perceived burden was found to be highly associated with depression among caregiver’s behavior and psychiatric symptom in-patient. These factors become important predictor of decrease quality of life and high burden and depression in caregiver. Hence, with the examination such correlation between perceived burden and depression in caregiver, evaluation of management strategies related to stress and psychological morbidity is necessary to promote resilience and motivation of paid staffs to provide care to dementia patient.
Another common challenges facing caregivers of dementia patient is that they are highly likely to experience symptoms of anxiety and depression due to dementia patient. Level of psychological distress has an impact of coping strategies taken by caregivers. This association between coping strategies and psychological distress in dementia caregiver was shown by García-Alberca et al. (2012) by conducting research with dementia patient and their primary care givers. By the use of evidence-based tool such as State-Trait Anxiety Inventory, the Beck Depression Inventory and Coping Strategies Inventory to measure anxiety, depression and coping strategies respectively in caregivers, the research showed that majority of caregivers has high anxiety and depression levels. Another important finding of the study was that it showed that participants using disengagement coping strategies had high anxiety and depression level compared to those who used more engagement coping strategies. By this outcome, impact of coping strategies on anxiety and depression in caregiver was observed. Hence, evaluating the effect of intervention that can support caregivers to use optimal coping strategies may help to reduce caregiver burden.
The prevalence of anxiety and depression in caregiver of dementia patient needs urgent attention because this has an impact on well being of both patient and caregiver (Draženka et al., 2014). Hence, motivational aspect of care giving and psycho-education is necessary to improve coping and caring skills of caregiver. The evidence regarding level of anxiety and distress in formal caregivers suggest the need to implement appropriate care intervention not only for patient but also for caregivers. The manner in which prevalence of anxiety and depression in caregivers can affect characteristics of patient and caregiver is understood from the fact that prevalence of caregiver burden is associated with increase in duration and severity of dementia (García-Alberca, Lara & Berthier, 2011). Hence, taking steps to identify effective intervention to modify psychological state of formal caregiver becomes necessary.
Based on review of intervention to reduce stress and anxiety among caregivers, several types of intervention have been implemented for caregivers. Some examples of this include face-to-face intervention, telephone-based support program and computer based support program. Although variation is found regarding the use and efficacy of telephone-based support program and computer based support program, however programs that are individually tailored to a caregiver is found to be most effective in reducing caregiver burden (Beinart et al., 2012). Further investigation regarding such intervention suggest psycho-education, individual counseling and support group programs as useful to provide individualized and tailor made support to caregivers as per their challenges and severity of burden.
Psychosocial intervention in the form of individual counseling or support group intervention is imperative for dementia caregivers because of the presence of burden, stress, anxiety and depression in caregivers. A cross-sectional study done in caregivers from Alzheimer’s Clinic Research Unit revealed that depressive symptom was most commonly found in caregivers followed by caregiver burden and anxiety symptoms. Psychological distress mainly contributed to high caregiver burden (Medrano et al., 2017). Therefore, to promote health of dementia patient, proper assessment and monitoring of caregiver aspects of psychic stress and burden is also important.
Different types of psychosocial intervention have been developed to promote mental and physical health of caregivers. The interventions are classified according to format or content. For instance, interventions exist in individual or group format. In addition, the content of intervention may differ such as it may focus psycho-education, building coping skills, behavior modification and skills training (Lins et al., 2011; Parra-Vidales et al., 2017). The effectiveness and impact of an intervention is also influenced by format and content of the intervention. In addition, Berwig et al. (2017) suggested individualized support and structured multi-component intervention as a promising intervention to reduce the burden of informal care giving. Although the research proposal is focusing on formal caregivers of dementia patient, however the research done on informal caregivers also gives important insight to reduce burden of care giving. By means of the REACH I intervention, an individualized program that included multi-component interventions like psycho-education, role playing, problem solving and skills training, the effectiveness of the program was evaluated in dementia caregiver. Participants were randomly allocated to intervention group and control group. The feasibility and acceptance of the program was excellent and burden related to care declined slightly in the intervention group. Hence, this shows that multi-component intervention given in individualized format may work to reduce anxiety and burden in caregivers of dementia patient. However, effectiveness of support group intervention in reducing caregiving burden has also been proved (Küçükgüçlü et al., 2017). Therefore, considering the effectiveness of both format is necessary to identify effective intervention for formal caregivers.
The review of separate research literature on individual counseling and support group intervention has revealed several limitations and need for future research. For instance, a systematic review and meta-analysis of cognitive behavioral therapy (CBT) for depression and stress in dementia caregivers revealed that cost per session is high and determining efficacy oon terms of cost-effectiveness and health benefit is important in the private sector. The study showed slight benefit of CBT on reducing stress and depression in caregivers, however cost-effectiveness of the therapy could not be proved (Mallikarjun, 2018). Review of research literature related to social support interventions has revealed that caregivers benefits from such intervention, however results were inconsistent across studies. Some studies gave positive outcome for dementia caregivers, however other studies reported no improvement on social support variables (Dam et al., 2016). Accessibility issues were also observed that influenced participation in support group intervention. Hence, the review of past research indicated the need to conduct more social support intervention with the use of multi-component content to enhance positive benefits for target population group. The consideration regarding increasing accessibility to support intervention and delivering it in an simple format was necessary.
The review of research shows lack of research done in formal caregivers of dementia patients. Studies exist regarding evaluation of formal support for informal caregivers providing care to persons with dementia. Lethin et al. (2016) conducted an exploratory cross-sectional study to investigate about support needs for informal caregivers. The study showed counseling, caregiver support and caregiver education as important types of support activities. However, utilization of support group intervention was low among informal caregivers. Caregiver support was available for all stage of disease except England and Estonia. Counseling was the intervention that was widely utilized by caregiver compared to education and respite care. Goeman, Renehan and Koch (2016) also showed lack of studies assessing cost-effectiveness of interventions for dementia caregivers. Hence, by evaluating the efficacy of support group intervention in terms of availability, utilization and professional support providers across several countries, the study showed lack of appropriate method to make support group interventions available to all informal caregivers. As the support is missing for informal caregivers, the severity of the issue in formal caregivers is an area of future research interest. Analysis of past research may help in structuring the research proposal and developing key aim and objectives to enhance the quality of review and interpretation. Several limitations were found in research such as methodological heterogeneity in studies was seen. Risk of bias was also seen in many randomized controlled trial as features of randomization, blind and allocation concealment was missing. Hence, for future research work, there was a need to evaluate effectiveness of both tailored and non-intervention to enhance cost efficacy as well as feasibility of intervention for dementia caregiver. Future research work should also focus on addressing methodological limitation so that clinical efficacy of individual counseling and behavioral therapy can be established (Kwon et al., 2017).
The main aim of the research proposal is to evaluate the effectiveness of support group and individual counseling on reducing anxiety in formal caregivers of dementia patient. Individualized counseling comes under individual program formal which is regarded as more effective than group intervention (Pinquart & Sörensen, 2006). However, support group interventions target behavioral modification and problem solving approach and such strategies are considered more effective than psycho-education (Berwig et al., 2017). Hence, as there exists different benefits of individual and support group intervention, conducting systematic review is important to understand whether individualized counseling or support group intervention is beneficial in reducing anxiety in caregivers of dementia patient.
Dementia is a progressive and life-limiting mental illness that has significant impact on the health outcome of affected individuals and associated with daily life challenges for both patient and the care giver (Nehen & Hermann, 2015). Both formal and informal caregivers are involved in meeting daily health needs of dementia patient. However, providing care for patient with dementia is associated with high rate of emotional stress and depression, poor physical health and high risk of mortality in formal caregivers (Springate & Tremont, 2014). The psychological and financial burden of the disease increases due to such negative consequence of care giving. The symptoms of dementia patient that are most predictive of caregiver burden include disruptive behaviors like aggression and agitation followed by mood disturbance and delusions. Chronic stress, anxiety and depression is a common issues faced by formal caregivers that worsens physical health status of caregivers (Iavarone et al., 2017). The category or type of stress of burden for caregiver is also dependent on level of care demands, coping skills of caregiver and the presence of elevated psychiatric symptom in patient (Cheng, 2017). Hence, negative health outcome of dementia caregivers is the main research problem and finding effective intervention to support dementia caregiver and increase their coping skills are necessary to maintain health of caregivers.
Currently, there are many types of interventions available to support formal caregivers of dementia patient. Some important interventions include individual counseling or support group participation to reduce symptom of anxiety and depression in caregiver. Although evidence has proved the effectiveness of individualized counseling on reducing burden of family caregivers Shaw et al. (2015), however it is not clear whether support groups are effective in reducing the risk of depression in dementia caregiver or not. Hence, the research question is centered on the two interventions of individualized counseling and support group participation. Investigating about the impact of one intervention over the other is essential to promote cost efficiency in treatment and understand the intervention that can provide maximum health benefit to target formal carer.
The identified PICO in relation to the research problem are as follows
P (Population): Caregivers of dementia patient
I (Intervention): Support group
C (Comparator): Individual counseling
O (Outcome): reduction in anxiety and well-being
The PICO question for the systematic review is ‘Is participating in a support groups (I) is more effective than individual counseling (C) for formal carers of people with dementia (P), in reducing anxiety and improving wellbeing (O)?’
Objectives of the review:
The main objective of the systematic review is as follows:
The systematic review related to effectiveness of counseling and support group intervention to reduce anxiety in formal caregiver is necessary because outcomes of the study may help in determining the most cost-effective way to reduce care giving burden for caregiver. The significance of the study is also seen because of the prevalence of psychological damage and depression in formal caregivers of dementia. Miyamoto, Tachimori & Ito, (2010) clarified the variation in characteristics of the burden on formal carer compared to informal care. The study explored the impact of behavioral, psychological symptoms and function performance on perceived burden of formal caregivers. The study finding proved that aggression and irritability is the most common cause of caregiver burden. In addition, the burden is high for formal caregivers compared to informal caregivers because they are in charge of large number of dementia patient compared to single patient. Hence, evaluating the effectiveness of counseling and support group intervention may help to manage aggressive behaviors of patients and reduce the burden physical and psychological burden of caregivers.
To get answer to the research question, a systematic review of studies will be conducted. The format for the systematic review will be guided by PRISMA guideline. The PRISMA is an evidence-based framework that defines list of items needed for reporting in systematic review. It is the most trusted resource for behavioral, social and psychological science research. By the use of PRISMA checklist, all the procedure can be implemented as per the guideline for systematic review. It has 26 sub-items comprising the steps such as information about authors, structured summary, review protocol and methods, search strategy, study selection process, assessment of bias and data analysis (Shamseer et al., 2015).
The search process for articles related to the research question will be guided by specific inclusion and exclusion criteria. Establishing inclusion and exclusion criteria will establish the boundary for research process and systematic review. Extensive search strategy will also be prepared to maximize the likelihood of retrieved good research articles to answer the research question. Use of electronic and multiple database from the field of health care and social science and specific search term will support getting maximum number of research article related to study objective. In addition, certain Boolean operations and truncation will be applied during literature search to get more focused and productive result. Apart from reviewing the title, abstract and full-text of the articles, additional studies will be retrieved by looking at references of studies. Data abstraction is also an important part of systematic review and this will be done by categorizing data in terms of author, population, study design, target age group, strength and limitation, health intervention and health outcome. The quality and validity of research articles will be judged by assessment of bias in studies (Moher et al., 2015).
Although the main focus will be to evaluated randomized controlled trials investigating about individual counseling and support group intervention for dementia caregiver, however evaluation of other types of research will be done to get complete idea about effectiveness of one intervention over the other. Randomized controlled trial will be the preferred study type for analysis. However, individual intervention based studies specific to individual counseling or support group will be also included for analysis and review (Ingham-Broomfield, 2016).
Research articles related to research question will be selected based on pre-specified criteria which are as follows:
Study design: Randomized controlled trials will be the most preferred choices for inclusion followed by intervention specific studies because randomized controlled trial are better quality of studies compared to other studies according to hierarchy of research evidence (Ingham-Broomfield, 2016).
Study participants: As the research question focuses on reducing anxiety and burden in formal caregivers of dementia patient, all research articles must have formal caregivers (paid professionals) like nurses, primary care staff or social worker as research participants.
Publication: Research articles published within 2008 to 2018 will be included in the systematic review.
Intervention: All included studies should have individual counseling or support group as the main intervention for evaluation because our research question is focused on evaluating only these two interventions.
Research question: The chosen research article must address the research question and it should target anxiety, depression and well-being of dementia caregivers
Outcome variable: All included studies should have outcomes variables such as anxiety, depression, caregiver burden, quality of life or physical and mental health because the research question has anxiety and well-being as the outcome of the intervention.
Language: As per the guidelines for review, only that article will be included in systematic review, which is published, in English language.
The exclusion criteria for the selection of articles were as follows:
The search for relevant research articles related to the research question will be done from health care based databases like MEDLINE, EMBASE, CINAHL, PsychInfo and PubMed. Medline and PubMed are databases that published recent and peer review biomedical literature from around the world and these databases help to retrieved large number of research articles relevant to the research question. As the research topic is mainly related to behavioral or social intervention, PsychINFO has also been selected for literature search. The search process will be refined by the use of specific search terms and date filters. The date for publication will be fixed as per inclusion criteria and the types of resource will be updated to journal articles only. To conduct search from PubMed and CINAHL databases, Boolean operators will be used such as ‘and’ and ‘or’. The rational for using ‘and’ will be to keep all search terms in the same reference and the rational for using ‘or’ will be to combine terms similar in meaning. In addition, appropriate filter or limit specific to database will be used to refine the search (Peters et al., 2015).
The primary search terms that will be used to retrieve research articles include ‘effectiveness of support intervention and individual counseling intervention for formal dementia caregivers’, ‘Support group versus individual counseling for dementia caregiver’ and ‘efficacy of support group compared to individual counseling. Several Boolean operators like ‘OR’ and ‘AND’ will be applied to conduct searching from specific databases.
The search for articles will be conducted on databases like PubMed and CINAHL databases to identify relevant keywords contained in the titles, abstracts and subject descriptors. The initial logic grid will be aligned with the PICO elements of the review in the following ways:
Table 1: Logic grid aligned with PICO elements of the review
|
Population |
Intervention |
Outcome |
|
Caregivers of dementia patient |
Support group |
Reducing anxiety and depression |
|
Formal caregivers of dementia patient |
Individual counseling |
Reducing psychological symptoms |
|
Paid caregivers of dementia |
Support group and individual counseling |
Reducing depression and improving the quality of life. |
The search will be performed in other databases using key words identified from the first stage of search. Boolean operators like OR and AND will be used get similar research studies.
All records obtained by entering search terms in chosen database will be screened first based on the suitability of titles and abstracts. Studies will be excluded in this stage if the research does not have the intervention and desired population group for research. In addition, studies which cover outcomes other than anxiety, depression and caregiver burden will be excluded from analysis. After the initial screening by title and abstract and exclusion of irrelevant studies, full-text screening will be done for remaining studies based on inclusion and exclusion criteria. After full-text screening, screening of references in the studies will also be done to find relevant articles related to the research question. Any disagreement or confusion regarding the eligibility of the study will be judged by taking opinion from other experienced person in the field of research. As the inclusion criteria mentioned use of English language publication in the review, the consideration for translation of resource will not be required.
The main purpose of evidence appraisal in systematic review is to retrieved valid and reliable research evidence to address research question. As systematic review aims to identify, evaluate and summarize findings relevant to a specific topic, evidence appraisal technique is important to minimize bias and include reliable findings to make conclusion about studies. The basis criteria for evidence appraisal is that all selected or eligible studies must have clearly stated research objective, easily reproducible methodology, meet all eligibility criteria and have systematic presentation of research outcome. The critical appraisal process is guided by the use of specific appraisal question or checklist. This may be framed manually or done by the application of appropriate appraisal tools (Richards, 2010). A large number of tools are available for critical appraisal and selection of appropriate tools as per study design will guide the evidence appraisal process in this systematic review.
The most important aspect of the literature review will be to critical appraise research literature on the basis of its quality and methodological strength. The Grade tool (Grading of Recommendations Assessment, Development and Evaluation) will be used for assessment of overall quality of studies. It qualifies the quality of studies on four levels such as high, moderate, low and very low. In addition, the CASP tool (Critical Appraisal skills program will be used to assess the quality of each articles independently). The CASP tool has 10-11 item questionnaire that judge the quality of research evidence on the basis of clear statement of study objective, research design, recruitment method, strength of methodology, relationship between researcher and participants, rigor in data analysis and ethical issues. Yes or no response to each set of questionnaire will help to judge the quality and credibility of research work. As the main preference will be to include randomized controlled trial (RCT) in analysis, the quality of RCTs will be judged by questions on trial validity, randomization, blinding, similarity of the groups at the start of the trial, equal treatment of group, treatment effect and application to local population group (Elwood, 2017).
The main aim of quality appraisal will be to identify weakness in study methodology and to improve interpretation of study findings. However, this will not be done for the purpose of excluding research articles from the review. This is because studies rated low on methodological criteria often give new insights related to the research question, however studies rated high on methodological rigor are often found to have poor interpretation of study findings (McCabe, You & Tatangelo, 2016). A study done regarding choice of tools for quality appraisal in systematic review states that CASP is the most inclusive tool in relation to study quality. However, one limitation of using CASP tool for quality appraisal is that presence of specific checklist makes it difficult to take decision regarding quality. The combination of main question and sub-question in reviews increases variability in answer (Voss & Rehfuess, 2013). Hence, taking subject specific approach to selection question may help to increase the preciseness and reliability of quality appraisal (Carlson & Morrison, 2009).
All included research articles will be extracted and categorized on the basis of study type, author, type of intervention, health outcome, age group and population. The risk of bias in studies will be judged by identifying limitations in reporting of finding, limitation in sample recruitment or study selection and limitations in analysis of study findings. The number of articles identified from data base search, number of articles screened by title and abstract, number studies eligible for review and list of final excluded studies will be summarized in the form of PRISMA flow diagram. This can good overview about the process used to identify and assess research literature for systematic review (Booth, Sutton & Papaioannou, 2016).
Apart from categorization of research evidence on basis of criteria mentioned above, another approach to synthesize data will be to conduct thematic analysis of included research literature. The findings of the research article will be synthesized in the following ways:
To improve rigor and reduce bias in the systematic review, the first strategy will be to include research articles in the review by discussion with two or more authors. This will help to minimize individual biases and differences of opinion in categorizing the research evidence. The risk of bias assessment for included studies will be done by the use of the Cochrane Collaboration Risk of Bias Tool and the risk of bias will be categorizes into high risk of bias, unclear risk of low risk. The bias or limitation in study methodology will be identified through presence of publication bias, selection bias and performance biases. The assessment of bias is important in systematic reviews to enhance the reliability and credibility of review. Methodological rigor is an element that affects the quality and transferability of research evidence and like other research methods, systematic review is also vulnerable to many biases. To ensure scientific rigor, taking strategic steps to identify or assess bias is necessary (Almeida & Goulart, 2017).
McDonagh et al. (2013) suggest that setting effective inclusion criteria also plays a role in avoiding bias in selecting studies. For example, identifying population of interest is important to reduce ambiguity in population inclusion criteria. In addition, having clear specification about research outcomes in included studies is important to reduce variation in study selection. Other possible chances of bias during systematic review may occur due to conflict of interest of author or staffs involved in review process. This can be addressed by discussion about the eligibility of studies with a third person or by the use of specific tools that is reliable as well as sensitive to effectively categorize research evidence on the basis of quality. For this reason, the Cochrane Risk of Bias Tool and the CASP tool will be included in the systematic review to enhance the rigor of study and minimize potential biases during the process too.
As answer to the research question will be obtained by systematic review and not primary research with population of interest, ethical consideration related to informed consent and study approval will not be applicable. However, ethical principles related to informed consent, confidentiality and research approval can be done for selected research articles. Hence, while evaluation research evidence for quality appraisal, report of ethical assessment will also be included. For example, the studies can judged on the basis of goal related considerations such as conflict of interest, justification, publication bias, safety consideration of participant, approval from research ethics committee and appropriate use of comparators (Price et al., 2018).
Transparency is also important as part of ethical consideration and this will be done by acknowledging those who worked on the project. Information about funding and all source of funding is important. To ensure accuracy in the systematic review, planning accurate data extraction process will be important. This will be done by including at least two reviewers during the data extraction process (Wage & Wiffen, 2011). Hence, following general convention on publication ethics and ethical guidelines may help to conduct systematic review in a transparent and ethical manner.
After the identification of relevant research evidence and discussion of key findings in terms of research objective and research question, it is planned to disseminate the findings of the review after taking approval from reviewer. After getting consent for dissemination of finding, the research evidence will be disseminated in health care institutes, dementia clinic and research organization related to dementia care. The findings may be disseminated in paper or digital format.
It is planned to complete the systematic review within a 1 year time frame. The main procedures that has been included in the systematic review includes preparation of study protocol, planning research design, defining eligibility criteria for studies, developing search strategy, identification of risk assessment and evidence appraisal method, synthesis of findings and discussion of systematic review outcomes. The key activities for systematic review and time requires for completing each procedures is mentioned in the Gantt chart below.
|
Stages of systematic review |
Jan-Feb 2018 |
Mar-April 2018 |
May-June 2018 |
July-August 2018 |
Sept-October 2018 |
Nov-Dec 2018 |
|
Preparation of systematic review protocol |
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|
Development of eligibility criteria |
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|
Search for published studies |
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|
Inclusion assessment |
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|
Risk of bias assessment |
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|
Validity assessment |
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|
Data collection |
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|
Data analysis |
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|
Preparation of review report |
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