Evidence Synthesis Paper
Background and Significance
The critical importance of caregivers cannot be overemphasized concerning providing care for people with chronic ailments and disabilities. Caregivers play a crucial role in end-of-life struggles. They manage the patients' condition and provide medication. They work towards the attainment of the highest well-being conditions possible under the circumstances. Caregivers carry a heavy responsibility. Since they are close to the patients and interact with them even personally during sickness, they are also prone to physical and psychological morbidities. Thus, to alleviate the caregiver's burden, there should be mechanisms that aim to provide relief to caregivers. The articles used in the research are shown in figure 2.
Providing hospice care registers an effect on family caregivers' well-being in many ways, with the greatest being on their mental health. The tasking duties, coupled with suboptimal working conditions, can place immense stress on a family caregiver. This stress can exacerbate if the caregiver has to work with little to no support, preparation, and resources. If left unchecked, this stress can worsen, which will have negative effects on mental health and, afterward, the caregiver's physical well-being. The deterioration in the caregiver's mental health due to the prolonged stress manifests as anxiety, depression, mental suffering, feelings of vulnerability, and drops in the quality of care given (Northouse, Katapodi, Schafenacker& Weiss, 2012).
There are multiple reasons for the mental suffering reported by caregivers to be addressed. Long-term studies on caregivers and their patients have reported poor patient adjustment to the care given, as the caregiver's emotional distress can become mirrored in the patient over time. Maintaining the quality of the patient's care can become more challenging for an emotionally unsettled caregiver. Three, the caregiver's emotional imbalance causes changes in the immune system, which increases the risk of the caregiver developing autoimmune diseases, improper control of glucose in the body, and cardiovascular diseases. These developments can decrease the caregiver's quality of life and, consequently, reduce the caregiver's ability to function optimally (Northouse, Katapodi, Schafenacker& Weiss, 2012).
Studies had been carried out to assess the benefits of psychosocial interventions for caregivers gave clear evidence of the need for these interventions to support caregivers. These interventions relieve the caregiver's pressure and reduce the feelings of emotional disturbances brought on by the caregiver's duties' protracted stress. The growth and implementation of evidence-based interventions that can have profound mental benefits for caregivers can be achieved through research. The research's influence will maximize the potential mental support gained by family caregivers through psychosocial interventions (McMillan et al., 2006).
The estimate of Americans assisting an ailing or disabled family member stands at 52 million. And high levels of stress in family caregivers have been linked to depression, health issues, and mortality rates. To mitigate these effects, psychosocial interventions have been examined as a possible solution. The results obtained from research into this solution indicate that family caregivers will greatly benefit from such interventions as they will be better equipped to cope emotionally and physically. These interventions also imbue the caregiver with the skills to tackle any problem during duty performance. A meta-analysis into the benefits of these psychosocial interventions for family caregivers revealed a significant clinical improvement in the caregiver's psychological health.
Previous studies on family caregivers attending to hospice patients with incurable cancer diseases reported varying degrees of high distress levels in 55-90% of the family caregivers (F.C.s). These stress levels were measured at different points in time during the delivery of care. Data gathered to determine the influence of external factors on family caregivers' distress levels could draw very little inference from the effect of gender. Other psychosocial factors, such as the family...
The caregiver's social neglect could also occur; geriatric patients and patients with small families are prone to this form of neglect. The caregiver pays very little attention to the patient beyond the necessary interaction for administering medication and other auxiliary duties. There is no social stimulation provided to the patient, and abandonment for long periods may also occur. The magnitude of such neglect can worsen if the caregiver is in a poor state of mind. A feeling of distress or depression brought on by the patient's persistent care could affect the patient and the caregiver's interpersonal relationship. The caregiver becomes less willing to have interactions with the patient beyond perfunctory ones. The caregiver's grim resignation to the patient's condition, the constant attention to the patient's needs and requirements, and the patient's steady deterioration can all culminate to push the caregiver to a breaking point (Reinhard, Given Petlick&Berni's, 2008).
The existence of conflicts within the family can also affect the quality of care given. Stressful relations between the patient and the caregiver reduce the caregiver's willingness to render more than the required assistance. The onset of depressive symptoms in the caregiver initiated by the tasking duties and poor self-care reflects the relationship between the caregiver and the patient. The resentment manifested in the caregiver at every instance of performing caregiving duties creates an emotional barrier between the patient and the caregiver (Reinhard, Given Petlick&Berni's, 2008).
An increase in the difficulty of the caregiver's duties to patients with declining cognitive function can result in conflict. The voicing of displeasure with the duties imposed, the deterioration of the patient's health leading to…
References
AARP Public Policy Institute (2015). Caregiving in the U.S. Retrieved from https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-us-research-report-2015.pdf
Berry, L., Dalwadi, S.M. & Jacobson, J.O. (2017). Supporting the Supporters: What Family Caregivers Need to Care for a Loved One with Cancer. Journal of Oncology Practice, 13(1), 82-93.
Brassard, A. (2012). Removing barriers to advanced practice registered nurse care: Home health and hospice services (p. 3). Washington (D.C.): AARP Public Policy Institute.
Doris, T. (2007). Care for the family in palliative care. J Pall Med, 2, 26-30.
Engen, N. (2017). Interventions to Alleviate the Psychosocial Needs of Hospice Family Caregivers: A Systematic Review.
Farmer, B. (2020, January 23). Patients Want A 'Good Death' At Home, But Hospice Care Can Badly Strain Families. Retrieved October 13, 2020, from https://khn.org/news/home-hospice-care-unexpectedly-burdens-family-caregivers/
Fay, M. (2019, April 02). End-of-life Options - Hospice Costs & Who Pays for Care. Retrieved October 13, 2020, from https://www.debt.org/medical/hospice-costs/
Given, B. A., Given, C. W., Stommel, M., & Lin, C. S. (1994). Predictors of use of secondary carers used by the elderly following hospital discharge. Journal of aging and health, 6(3), 353-376.
Grabel, E., Trilling, A., Donath, C. &Luttenberger, K. (2010). Support groups for dementia caregivers - Predictors for utilization and expected quality from a family caregiver's point of view: A questionnaire survey PART I. BMC Health Serv Res., 10(4), 214-219.
Hoffmann, R.L. & Mitchell, A.M. (2007). Caregiver Burden: Historical Development. Nursing Forum, 33(4), 5-12.
Huelat, B. &Pochron, S.T. (2020). Stress in the Volunteer Caregiver: Human-Centric Technology Can Support Both Caregivers and People with Dementia. Medicina, 56, 256-270.
Jack, B. A., O'Brien, M. R., Scrutton, J., Baldry, C. R., & Groves, K. E. (2015). Supporting family carers providing end?of?life home care: a qualitative study on the impact of a hospice at home service. Journal of Clinical Nursing, 24(1-2), 131-140.
McMillan, S. C., Small, B. J., Weitzner, M., Schonwetter, R., Tittle, M., Moody, L., & Haley, W. E. (2006). Impact of coping skills intervention with family caregivers of hospice patients with cancer: a randomized clinical trial. Cancer, 106(1), 214-222.
Nabili, S. N. (2018, August 21). Hospice: Facts About the History of Hospice and Respite Care. Retrieved October 13, 2020, from https://www.medicinenet.com/hospice/article.htm
National Hospice and Palliative Care Organization. (NHPCO). (2012). NHPCO facts and figures: hospice care in America. National Hospice and Palliative Care Organization. http://www.nhpco.org/sites/default/files/public/Statistics_Research/2012_Facts_Figures.p dfNorthouse, L. L., Katapodi, M. C., Schafenacker, A. M., & Weiss, D. (2012, November). The impact of caregiving on the psychological well-being of family caregivers and cancer patients. In Seminars in oncology nursing (Vol. 28, No. 4, pp. 236-245). WB Saunders.
Oechsle, K., Ullrich, A., Marx, G., Benze, G., Heine, J., Dickel, L. M., ... &Bokemeyer, C. (2019). The psychological burden in family caregivers of patients with advanced cancer at the initiation of specialists inpatient palliative care. BMC Palliative Care, 18(1), 102.
Oliver, D. P., Demiris, G., Washington, K. T., Clark, C., & Thomas-Jones, D. (2017). Challenges and strategies for hospice caregivers: a qualitative analysis. The Gerontologist, 57(4), 648-656.
Otis-Green, S., & Juarez, G. (2012, November). Enhancing the social well-being of family caregivers. In Seminars in oncology nursing (Vol. 28, No. 4, pp. 246-255). WB Saunders.
Parmar, J., Anderson, S., Abbasi, M., Ahmadinejad, S., Brémault-Phillips, S., Chan, K., ... & Tian, P. G. J. (2020). Support for family caregivers: A scoping review of family physician's perspectives on their role in supporting family caregivers. Health & social care in the community, 28(3), 716-733.
Pottie, C. G., Burch, K. A., Montross Thomas, L. P., & Irwin, S. A. (2014). Informal caregiving of hospice patients. Journal of Palliative Medicine, 17(7), 845-856.
Reinhard, S. C., Given, B., Petlick, N. H., & Bemis, A. (2008). Supporting family caregivers in providing care. In-Patient safety and quality: An evidence-based handbook for nurses. Agency for Healthcare Research and Quality (U.S.).
Ullrich, A., Ascherfeld, L., Marx, G., Bokemeyer, C., Bergelt, C., &Oechsle, K. (2017). Quality of life, psychological burden, needs, and satisfaction during specialized in-patient palliative care in family caregivers of advanced cancer patients. BMC Palliative Care, 16(1), 31.
Vanderwerker, L. C., Laff, R. E., Kadan-Lottick, N. S., McColl, S., &Prigerson, H. (2005). Psychiatric disorders and mental health service use among caregivers of advanced cancer patients. Journal of Clinical Psychology, 23(28), 11-19.
Whitters, D. (2012). In U.S., Caregivers' Emotional Health Often Suffers Negative emotional effects of caregiving greatest for those younger than 45. The Gallup Poll: Public Opinion 2011 (p. 186). Rowman & Littlefield Publishers.
AppendixTable 1Well-being Sub-index Scores: Caregivers verses Non-CaregiversAmong those employed full time.
Gallup-Healthways Well-Being Index. January 2, 2010- November 24, 2010Figure 2Matrix TableSource CitationPurpose/ProblemDesign/SampleInstruments/Measures[Include Reliability/Validity]Results[Include actual data]Strengths/WeaknessesBerry, L., Dalwadi, S.M. & Jacobson, J.O. (2017). Supporting the Supporters: What Family Caregivers Need to Care for a Loved One with Cancer. Journal of Oncology Practice, 13(1), 82-93.
The authors of the present article propose a framework for advancing the relevant support to cancer patients' caregivers.
N/AN/AThe authors make a finding to the effect that a four-part framework would be ideal in advancing support to caregivers. The framework comprises of the following steps: caregiver needs assessment, caregiver education, caregiver empowerment, and proactive assistance to caregivers.
Strength: The authors, in this case, focus on a patient constituency that routinely needs caregiver support, i.e., patients with cancer. According to the authors, "an estimated 4.6 million people in the United States care for someone with cancer at home" (82). Thus, the author's findings would find a worthy and broad-based application.
Weakness: It is, however, essential to note that the study is limited by its focus on only two very broad categories of caregivers, i.e., those caring for patients having metastatic cancer that is at an advanced stage and those caring for cancer patients undergoing therapy meant to cure the disease. This is a relatively narrow perspective, considering the broad nature of the caregiver burden problem.
Grabel, E., Trilling, A., Donath, C. &Luttenberger, K. (2010). Support groups for dementia caregivers - Predictors for utilization and expected quality from a family caregiver's point of view: A questionnaire survey PART I. BMC Health Serv Res., 10(4), 214-219.
The authors seek to identify the various factors that influence or impact caregiver support quality amongst dementia patients.
The cross-sectional study was undertaken in a total of 4 regions – each having a minimum of 2,500 patients.
A 3-page questionnaire was utilized. For acceptability and comprehensibility, the said questionnaire was tested on a total of twelve caregivers.
The authors make a finding to the effect that caregivers agreed that the relevance of psycho-educative orientation could not be overstated.
Strength: The focus on numerous regions gives the study findings broad applicability.
Weakness: In seeking to analyze data from a total of 404 caregivers, the study made use of both binary logistic regression analysis and content analysis. Although the former statistical technique could come in handy to better comprehend the actual impact of independent variables, it is rather limited to predicting continuous outcomes.
Hoffmann, R.L. & Mitchell, A.M. (2007). Caregiver Burden: Historical Development. Nursing Forum, 33(4), 5-12.
The present article concerns itself with the caregiver burden concept – from a historical viewpoint.
N/AN/AAs per the authors of the article, the idea of caregiving has undergone various transitions over the last few decades.
StrengthThe article reviews the initiation of the caregiver burden right from the onset – i.e., the 1950s and the successful evolution of the caregiver burdenWeakness: The article is somewhat outdated – having been published more than a decade ago.
Huelat, B. &Pochron, S.T. (2020). Stress in the Volunteer Caregiver: Human-Centric Technology Can Support Both Caregivers and People with Dementia. Medicina, 56, 256-270.
The study mainly concerns itself with the concept of "caregiver stress burden and explore potential technologies and behaviors to ease it" (257).
In the present study, the authors elected to use a qualitative, exploratory design founded on hermeneutical methodology.
Questionnaires were utilized – with two caregiver kinds being the focus of the interview.
The authors found that amongst home-based caregivers, the primary source of stress burden was dementia symptoms. This is more so when it comes to hygiene care, memory loss, and medication management. Further, it was also found that access to the available resources was of great relevance in as far as stress relief is concerned.
StrengthThe authors relied upon numerous peer-reviewed sources in support of their findings – hence promoting reliability.
Weakness: However, their utilization of an exploratory design essentially resulted in the generation of qualitative info. It is important to note that the interpretation of information of this kind could result in bias to no small extent.
Vanderwerker, L. C., Laff, R. E., Kadan-Lottick, N. S., McColl, S., &Prigerson, H. (2005). Psychiatric disorders and mental health service use among caregivers of advanced cancer patients. Journal of Clinical Psychology, 23(28), 11-19.
In the present study, the authors sought to map the prevalence of both mental health services and psychiatric disorders among those in caregiver roles.
Interviews were conducted, targeting a total of 250 informal caregivers.
The Structured Clinical Interview of the Diagnostic and Statistical Manual of Mental Disorders – 4th ed. – was administered to interviewees.
The study found that "many caregivers of advanced cancer patients either meet criteria or are being treated for psychiatric problems" (18).
StrengthThis is the only study found that focused on the psychiatric disorder's prevalence amongst caregivers. The psychiatric disorder frequencies were highlighted.
Weakness: Although this happens to be a peer-reviewed article, the fact that it was published more than a decade ago could limit the applicability of some of its conclusions in a contemporary scenario.
Oechsle, K., Ullrich, A., Marx, G., Benze, G., Heine, J., Dickel, L. M., ... &Bokemeyer, C. (2019). The psychological burden in family caregivers of patients with advanced cancer at the initiation of specialist in-patient palliative care. BMC Palliative Care, 18(1), 102.
The study aimed to systematically evaluate distress, depressive and anxiety symptoms in the defined cohort of F.C.s of advanced cancer patients.
This prospective multicenter research was carried out in two University Medical Centers in Germany with similar F.C.s support structures.
F.C.s completed the questionnaires that included German versions of various standardized and mostly validated scales to measure distress, depressive and anxiety symptomsOut of 23 given problems, the five most frequently reported ones were sadness in 91% (n?=?209), sorrows in 90% (n?=?202), anxiety in 78% (n?=?173), exhaustion in 77% (n?=?171), and sleep disturbances in 73% (n?=?163) of F.C.s.
The data assessed in this study are housed at the Palliative Care Unit, Department of Oncology, Hematology, and BMT, University Medical Center HamburgAlternatively, interrelationships of mental burden in dyads of patients and their F.C.s also raise the question, when individual versus dyadic interventions are most beneficial.
Oliver, D. P., Demiris, G., Washington, K. T., Clark, C., & Thomas-Jones, D. (2017). Challenges and strategies for hospice caregivers: a qualitative analysis. The Gerontologist, 57(4), 648-656.
This study's goal was to comprehend the problems and coping methods used by hospice caregivers while they take care of family members.
This study is a secondary data analysis from an attention control group in a large randomized controlled trial testing a cognitive-behavioral intervention with hospice caregivers.
Audiotaped interviews were coded with initial themes and combined into final categories of caregiving challenges and strategies for managing the hospice caregiving experience.
The sample included 52 caregivers who participated in a total of 205 phone calls (average of 3.9 of 4.0 per participant) for a total of nearly 58hr. Each interview averaged 33min and ranged from 2 to 60min. Caregivers had been an average of 62 years old, primarily female (77%), white (90%), and were most often adult children of the patient (56%). The majority had been caregiving for more than one year. Patients were an average of 82 years old and predominately female (65%). A third of the patients had a cancer diagnosis, and nearly a fourth had a diagnosis of dementia or a related disorder.
The caregivers in the study described similar challenges as those reported in previous studies. Narratives discussed emotions, including anxiety, depression, stress, and relationship issues, all found in former research.
Although data saturation was achieved, the findings cannot be generalized to a broader or more diverse population from these data alone.
McMillan, S. C., Small, B. J., Weitzner, M., Schonwetter, R., Tittle, M., Moody, L., & Haley, W. E. (2006). Impact of coping skills intervention with family caregivers of hospice patients with cancer: a randomized clinical trial. Cancer, 106(1), 214-222.
The study determined if hospice and a coping skill training intervention developed family caregivers' QOL, stress, coping, and mastery, versus with hospice and emotional support, and general hospice care.
A three-group randomized controlled trial was conducted, including baseline, 16 days, and 30-day analysis from March 1999 until May 2003. The participants included 354 family caregivers of community-dwelling hospice patients with advanced cancer.
Inclusion Criteria: caregivers had to be giving care to adult patients who have cancer. Both had to give their consent to participate, have at least a sixth-grade schooling, and acquire at least a score of 7 on the Short Portable Mental Status Questionnaire. Exclusion criteria: caregivers had been excluded in case they were in active therapy for cancer themselves. The coping skills intervention effectively improved caregiver QOL, cutting down the burden involving patients' symptoms and caregiving tasks versus hospice care alone or hospice and emotional support.
Because this intervention has been developed into a manual, it is replicable and can be easily used by professionals offering end?of?life care in several contexts. Only one element, younger patient age, anticipated attrition. It is unclear why younger individuals had higher attrition, but this result proposes that advanced age does not preclude involvement in this kind of trial.
Engen, N. (2017). Interventions to Alleviate the Psychosocial Needs of Hospice Family Caregivers: A Systematic Review.
This systematic review was developed to respond to what interventions happen to be available to alleviate the psychosocial needs of hospice family caregivers.
This systematic review gathered and analyzed empirical peer-reviewed articles to determine what interventions exist for hospice family caregivers.
This research's inclusion criteria had been as follows: all articles analyzed for this systematic review were empirical peer-reviewed studies. Both quantitative and qualitative articles had been considered for this research. The chosen time frame was 2000 to present as studies have shown growth both within the number of people receiving hospice services and the recognition to implement services that support patient and families' psychosocial needs. Reasons for exclusion included support explored for bereaved family members instead of support while the family member provided care.
Two key patterns materialized from the data, education opportunities and counseling services, and both of these were further broken down into informal education and psychoeducation.
This study has shown that hospice caregivers often have difficulty identifying their individual needs, as so much of their focus is on the needs of patient's needsOne significant limitation of this research is the accessible data that centers on the demand of family caregivers. From the set of inclusion criteria carried out, only 11 papers had been extractedOechsle, K. (2019). Current advances in palliative & hospice care: Problems and needs of relatives and family caregivers during palliative and hospice care—An overview of current literature. Medical Sciences, 7(3), 43.
The narrative analysis offers an expert summary of peer-reviewed, English-centered original publications and analysis on psychosocial and existential issues, supportive demands, and interventions for relatives during the patients' disease trajectory published between January 2017 and November 2018.
A total of 64 publications were included. This narrative review includes all relevant peer-reviewed publications on psychological morbidity and burden, quality of life, existential distress, preparedness/self-efficacy, supportive needs as well as on supportive interventions and the role of specialist palliative and hospice care in patients with advanced incurable diseases during disease trajectory published within the last two years.
Relatives report high levels of existential and psychological distress, burden, and mental morbidity through the patient's total disease trajectory. Overall, the discussed studies strengthen previous data reporting high rates of psychological and existential distress, psychosocial burden, and psychological morbidity in relatives during the patients' disease trajectoryDespite the author's effort to review all relevant topic-related studies from the last two years, possibly some could be missed. The review involves subjective selection bias due to methodological reasons: Search media was restricted to one search engine (PubMed), and the literature search was not pre-defined protocol-based.
Hospice Care and Catholic Ethics Is Hospice care consistent with Catholic bioethics? Chapple, in her discussion of the topic "Hospice care" in Catholic health care ethics, argues that ultimately the answer is yes, but she acknowledges that there are levels of difficulty in answering the question (Chapple 2009). The ethics of Hospice care present us with a complicated question, insofar as Catholic teachings on end-of-life care have at times provoked public
However, they are often emotionally isolated and are unable to determine whether or not they are loved by their family members or whether they will be missed after passing on. This often happens because the family members are not directly involved in providing hospice care to their patients. Hospice care can be a great way of strengthening the connection between the terminally ill patient and their loved ones and
Children believed that death is more like sleep and the dead may or may not return. Children between five and nine years of age belonged to the second group. Maria observed that children belonging to the second group perceived death as an irreversible phenomenon but still thought of it as an avoidable one. Death for these children represented a certain shadowy or skeletal figure who could possibly be evaded
Hospice Staff, Volunteers, and Hospice Patients There are very few critics of the Hospice organization, and rightfully so. Who could criticize such a helpful, vital organization? Indeed, if Hospice wasn't available to provide their pivotal services, then who would be there? A key reason for the value of the Hospice group is that there is a general acceptance among thoughtful people that Americans do not handle death very well. And
Hospice nursing can be difficult. Many times nurses transitioning into hospice care face struggles they would not encounter in other specialties. However there is a level of recognition involved in hospice care as it necessitates better care of patients and a stronger connection to the job and self. Many nurses working in hospices have detailed their work experiences in reflective essays and even journal articles. "Chapter members are nominated by
Kubler-Ross became an advocate of the hospice concept, and testified before Congress in 1972, where she advocated patient care at home for those with terminal illnesses. This helped lend support to the growing call for hospice care in America. After her testimony, hospice legislation was introduced in Congress in 1974, but it did not pass. It did however, bring the idea to light, and the movement began to spread
Our semester plans gives you unlimited, unrestricted access to our entire library of resources —writing tools, guides, example essays, tutorials, class notes, and more.
Get Started Now