Digital Repository Masters Projects Spring 2023 Care of the Oncology Caregiver Kristi Bailey Weber State University Follow this and additional works at: https://dc.weber.edu/collection/ATDSON Bailey, K. 2023. Care of the oncology caregiver. Weber State University Masters Projects. https://dc.weber.edu/collection/ATDSON This Project is brought to you for free and open access by the Weber State University Archives Digital Repository. For more information, please contact scua@weber.edu. 1 WSU REPOSITORY MSN/DNP Care of the Oncology Caregiver Project Title by Kristi Bailey, RN, BSN, MSN Student Student’s Name A project submitted in partial fulfillment of the requirements for the degree of MASTERS OF NURSING Annie Taylor Dee School of Nursing Dumke College of Health Professions WEBER STATE UNIVERSITY Ogden, UT 04/04/2023 Date Kristi Bailey, RN, BSN, MSN Student 04/04/2023 Student Name, Credentials (electronic signature) Date MSN Project Faculty (electronic signature) Date 4/5/2023 Melissa NeVille Norton (electronic signature) Date05/25/2023 DNP, APRN, CPNP-PC, CNE Graduate Programs Director 2 Note: The program director must submit this form and paper. Care of the Oncology Caregiver Kristi Bailey, BSN, RN, MSN Student Weber State University Annie Taylor Dee School of Nursing 3 Abstract Caregivers of cancer patients remain an underserved and vulnerable population. Oncology caregivers often lack the preparation and resources to care for cancer patients at home. They are also poorly prepared for the toll caregiving will take on their own health and well-being. Caregiver psychological distress can exceed that of the cancer patient causing an urgent need to find a way to deliver supportive care and interventions to cancer caregivers. Mobile application (app) resources provide an excellent solution for addressing this critical healthcare gap. A mobile oncology app can improve caregiver readiness, enhance their quality of life, relieve burnout, and provide guidance, information, and encouragement to caregivers without restrictions on place or time through a smartphone app. Smartphone apps have the potential advantages of reducing stress, providing key information, and nudging caregivers to focus on their own mental and physical health. Keywords: cancer, oncology, caregiver, stress, burnout, mobile app 4 Care of the Oncology Caregiver Cancer is a severe and life-limiting disease that has affected 1,918,030 new cases in 2022 alone, and 609,360 people have died this year just in the United States (Siegel et al., 2022). A patient's trajectory includes symptoms from disease and treatment. Often cancer patients require caregiver assistance; in the United States, an estimated 4.6 million people care for someone with cancer at home (Siegel et al., 2022). Cancer treatment has moved from primarily in the inpatient hospital setting to outpatient centers and patients’ homes. Family and friends are frequently required to learn how to care for patients and perform complex medical procedures such as hooking up daily IV chemotherapy or giving subcutaneous immunotherapies in the home. A caregiver often helps a person with cancer and is not paid to do so, whereas professional care providers get paid to give care (American Cancer Society, 2017). A caregiver is defined as a family or friend with a health problem or disability in the past 30 days (University of Utah College of Nursing, 2022). Caregiving by non-healthcare persons is demanding, resulting in poor quality of life, depression, trouble sleeping, burnout, stress, emotional, mental, and physical burden, and poor overall health (Akpan-Idiok et al., 2020). Caregiving can be frustrating and painful; caregivers can develop physical symptoms similar to the oncology patient, like fatigue, fear, hopelessness, guilt, confusion, doubt, anger, and helplessness. With an estimated 19 million new cancer diagnoses globally in 2020, more caregivers will exist to meet the needs of the person with cancer (Molassiotis & Wang, 2022). Caregivers need psychological care and support to remain effective and maintain their wellness. According to Berry (2017), only one-third of caregivers reported being asked by a healthcare provider what they needed to care for a person with cancer. Even fewer claim they 5 were asked what they needed to care for themselves. Therefore, this MSN project aims to enhance relationships between caregivers and their healthcare team through education. This issue will be improved by examining current literature to determine the extent of the problem and identifying best practices to develop and implement an app for caregivers to learn teamwork skills and the importance of caring for themselves to care for the patient. A caregiver's health status is like that of the average population (Glajchen, 2017). Over time, caregivers report more difficulty as the physical demands of caregiving take their toll, and the cancer patient's needs take center stage. Eventually, over half of the family caregivers report hypertension, arthritis, and heart problems (Glajchen, 2017). The well-being of caregivers is closely related to that of the cancer patient, both physically and mentally. A caregiver's feelings can fluctuate and should be assessed and reassessed over time. Variables associated with a caregiver's quality of life and well-being include different stages of the disease, the extent of the patient's disability, the number of personal care needs, lack of mobility, pain levels, and functional impairment (Streck et al., 2020). In an observational study of 60 patients with aggressive cancer and their caregivers, inadequate sleep was a frequent complaint for 47% of patients and 42% of caregivers. Sleep disruption was high in both groups (Glajchen, 2017). In addition, poor sleep is related to higher anxiety in caregivers and pain in patients. In a study of 1,635 long-term caregivers of cancer survivors, over half of the caregivers reported health problems three and a half years after the cancer diagnosis (Glajchen, 2017). Providing nine or more hours of caregiving time to a chronically ill spouse each week almost doubled the risk of coronary artery disease among the individuals studied. A Litzelman, 2019 study reported a significant relationship between caregivers' psychological distress and the measurement of their hormonal and inflammatory 6 markers. The chronic stress of caregiving has been shown to increase the risk of systemic inflammation, immune system dysfunction, hypertension, and cardiovascular disease (Litzelman, 2019). Early realization and detection of issues in caregivers are essential in preventing the onset of significant health problems for caregivers (Glajchen, 2017). Assessment is vital to identify family difficulties, caregivers who may be at risk because of their graphic, social, or medical issues, and caregivers who need additional services. The Caregiver Demands Scale (CDS) is a caregiving and task burden subscale. Tambling et al., (2022) describe CDS as a 22-item questionnaire to measure the subjective burden of caregivers in five domains (general strain, isolation, disappointment, emotional involvement, and environment). Respondents rate the frequency with which items apply to them on a 4-point scale, ranging from "not at all" to "often" (Tambling et al., 2022). The CDS will help to guide specific education and information, thus reducing uncertainty and helplessness for oncology patients and their caregivers. Other important caregiver scales, such as the Kingston Caregiver Stress Scale (KCSS), which monitors changes in caregiver stress level, and the Patient Health Questionnaire (PHQ9-9) depression scale, both will screen, monitor and measure the severity of burnout and stress in a caregiver (Kroenke & Spitzer, 2002). Caregivers report the need for information about the disease, symptom management, the disease course for the specific type of cancer, and what to expect regarding prognosis (Glajchen, 2017). Statement of Problem The physical well-being of cancer caregivers has historically been understudied though recent literature describes the ill effects, there remain few well-studied interventions (Park et al., 2020). With little information, it is both a limitation and an opportunity. Healthcare professionals can intervene to stop the cycle of caregiver stress and burnout. With assessment and 7 understanding of caregiver strain, we can prevent today's caregivers from becoming tomorrow's patients. This project will focus on providing a caregiver communication app that can guide caregivers in taking care of themselves and help in caring for the different phases of the patient’s cancer diagnosis. A cancer communication app differs from others because it can help manage symptoms and facilitate communication with healthcare providers for caregivers and patients (Ngo et al., 2020). The app will also contain information specific to the caregiver at that stage of the disease process, and caregivers can note the symptoms and side effects of patients and themselves. Cancer caregivers are a unique caregiving population that faces a steep learning curve when engaging in cancer information (Wittenberg et al., 2019). They need tools for managing stress and developing coping skills for themselves and the cancer patient. The goal is to implement a system-wide change of adding a caregiver support app to help oncology caregivers physically and psychologically. This caregiver support app will ease some of the burden and stress that caregivers are under following diagnosis. This app consists of education groups, resources encouraging dialogue between cancer patients and survivors and their health care team, chat and text support, and assessing caregiver needs resulting in greater control of their lives and peace of mind (Dearholt, 2017). Sections of the app will focus on significant issues, including sexuality concerns, quality of life, psychological well-being, spousal support, distance caregiving, spiritual care, family meetings, support groups, education, and family communication in oncology—also, a survivorship care plan to coordinate treatment and post-treatment plans for the patient and caregivers. The app will also list symptoms the patient and caregiver may experience and the time frame during the treatment course. 8 The communication app will support caregivers with an education program and a caregiver check-in every three months to ensure caregiver understanding of educational content while providing an opportunity for questions and an area for caregivers to express their feelings, concerns, and fears (Dearholt, 2017). Follow-up telephone calls, chat support, and an assessment of caregiver needs will help give caregivers greater control of their lives and peace of mind. The needs of caregivers are as critical as those of the person with an oncology diagnosis. This Master of Science in Nursing (MSN) project aims to provide a framework for the care of the oncology caregivers' needs being as crucial as the oncology patients' needs during this difficult time. Ways Project Contributes to Intended Recipients A caregiver is a family member or friend who has provided help through cancer treatments or care for a person with healthcare needs in the last 30 days. Whether younger or older, anyone may find themselves as a caregiver. Close to 1 in 3 adults aged 55-64 are family caregivers, and this age group is likely juggling work and caregiving responsibilities (Coumoundouros et al., (2019). Employment demands are important because employment is essential for family income and employment-based health insurance coverage. Care time is the most significant source of caregiver costs, often estimated at $1000.00 to $12,334.00 per month (Coumoundouros et al., (2019). Average monthly out-of-pocket and work absenteeism costs are at least $600.00 per month. Studies in the United States indicate that caregiver-reported hours of care provided by cancer caregivers are roughly equivalent to a fulltime job, with caregivers providing an average of 22–40 hours of help and support per week (Coumoundouros et al., (2019). All caregivers need support; the app will give them an outlet, help them gain new insights into what is happening, get ideas about coping, and help them know they are not alone (National Cancer Institute, 2022). 9 The rationale for the Importance of the Project Systematic research of the literature shows there are 175 cancer care apps for patients, but there is currently only one for cancer caregivers (Ngo et al., 2020). Caregivers looking after someone with cancer may experience unique needs related to their health and well-being while in the caring period. A smartphone app would be appropriate for providing caregivers with more information and resources if the content is specific to their needs and provided at an optimal time during that period. The app allows the user to access information at home or while waiting for the patient's appointments. Traditional interventions to address caregiver burdens, delivered in person or by telephone, have been widely studied and proven beneficial; however, traditional interventions can be time-consuming and expensive for caregivers. Caregivers may not want to or may be unable to find respite care while they attend sessions, and attendance may require the caregiver to take time off work. Web-based interventions can reduce these barriers (Kaltenbaugh et al., 2017). Care for caregivers is needed across all quality-of-life domains (Berry et al., 2017). The cancer process has many phases, from diagnosis to end-of-life, and different stages. Caregivers report physical strain and symptoms associated with providing care (Streck et al., 2020). Caregivers often experience the same physical symptoms as cancer patients. Due to psychological distress and the burden of caregiving, it is evident that oncology caregivers need help and would benefit from a caregiver help process. (Shin, 2018). Caregivers have acknowledged in studies that they do not need another physical person to help but ways to help themselves be more assertive and less stressed during the disease process (Park et al., 2020). Literature Review and Framework 10 Cancer Caregivers need psychological care and support to remain functional and maintain their quality of life. According to Berry (2017), only one-third of caregivers reported being asked by a healthcare provider what they needed to care for a person with cancer. Very few caregivers can even voice what they need to care for themselves. Without a caregiver support plan, those providing care to persons with cancer may suffer psychologically and physically, resulting in poor quality of life and possibly inadequate management of those for whom they provide care. This literature review aims to present evidence supporting the implementation of a smartphone app for oncology caregivers within six months post-cancer diagnosis. This distress by caregivers has the potential to be mitigated or prevented with the proper support (Applebaum et al., 2021). Framework The John Hopkins Nursing Model (JHMEBP) for change is the evidence-based framework for implementing the changes proposed by this MSN project. This model ensures that the latest research findings and best practices can quickly and appropriately incorporate into patient care (Dang, 2017). Would an evidence-based support program for oncology caregivers help with caregiver health, burnout, and stress? The next step for this framework is gathering evidence, which has been collected through research, analyzing and synthesizing data, and working with numerous oncology patients and caregivers. Lastly, plan, implement, evaluate, and communicate the plan. The research and data will be translated into a smartphone app by implementing and communicating a caregiver relief/support plan. This approach is proposed for its simplicity and efficiency while offering consistent guidelines for step-by-step implementation. The model aims to ensure that the latest research 11 findings and best practices can quickly and appropriately incorporated into patient care. The JHMEBP is a powerful problem-solving approach that identifies the problem. It is essential to determine the current practice and the kinds of evidence or study types that will help answer the question (Dang, 2017). Applying the JHMEBP to this project will begin by showing that oncology caregivers need as much care and support as the patient in the home setting and that, to date, this support does not exist. The next step will be to gather evidence of what kind of support they need and why it is required. Caregivers have physical symptoms that reflect the physical symptoms of the cancer patient, and they have the patient's stress, health, and well-being to consider. The following step is to implement a plan using a smart app for oncology caregivers to get education for the patient and themselves, to have a forum to talk to others in the same situations, and to have a space for questions. The final step will be to create and evaluate the app to see if caregivers feel less stress and burnout when using the app following a cancer diagnosis. Strengths and Limitations The JHMEBP represents the complexity of making practice changes based on evidence. The key to making the model successful is the evidence and quality of the material. The evidence will show the impact of whether the implementation of the smart app is successful. The smartphone app consists of talking tips and resources for caregiver communication with the patient, family, long-distance family, and healthcare providers, as well as general information-sharing features. While apps designed to assist clinicians with communication and advanced care planning are current trends with smartphone apps, the production of resources to support caregiver communication lags significantly (Wittenberg et al., 2019). 12 The JHMEBP is a powerful problem-solving tool to help make decisions and implement change. Information technologists can implement a way to communicate with caregivers through research and up-to-date technology. The JHMEBP applies to any nursing quality improvement project. Providers felt strongly that informal caregivers would benefit from an app and indicated they would recommend the resource to caregivers. (Wittenberg et al., 2019). These recommendations are essential, as caregivers are only sometimes aware of available resources and often feel they need more time to acquire and learn new technology. Providers also felt an app would increase caregiver communication and knowledge and positively impact family caregiver concerns and caregiver support-seeking strategies (Wittenberg et al., 2019). Feedback from various clinical and academic users informs the continued development and improvement of the Johns Hopkins EBP Model (John Hopkins Medicine, 2022). Caregivers indicated a need for such a resource to improve the caregiving experience. JHMEBP incorporates patient values and preferences to improve health outcomes (Johns Hopkins Hospital, 2022). Limitations of a caregiver communication app require users to have an iPhone or iPad, which is only sometimes possible for everyone. Elderly patients also may have a hard time utilizing the app due to technology restraints. The JHMEBP can take considerable time and effort; many cancer patients do not have much time to wait. The cost of developing a smartphone app that contains the information and direction needed for this to be beneficial can also be a limitation (Ngo et al., 2020). A caregiver's willingness to use smartphone apps and their need for this support will differ depending on the patient's stage of illness, their knowledge of approval and availability, and their current support network. Lack of knowledge and technology skills can be a barrier to 13 this change. This study also addresses the need for considering patients and their caregivers when establishing management strategies for patients with cognitive challenges, such as impaired concentration. The JHMEBP provides a framework and guidance through the research process to develop an evidence-based plan for change (Johns Hopkins Hospital, 2022). Analysis of Literature Cancer caregivers need psychological care and support to remain effective and maintain their wellness. Without a caregiver support plan, those providing care to persons with cancer may suffer physically and psychologically, resulting in poor quality of life and the possibility of inadequate management of those for whom they provide care. Search Strategies A literature search was conducted to identify current evidence using Google Scholar, Weber State University's Stewart Library's One Search and Advanced Search (which span multiple databases), and CINAHL to direct initial exploration to keep the information current. This literature review includes articles from 2017 through 2022. The search included keywords such as oncology caregivers, caregiving, palliative, relief, stress relief, emotional relief, quality of life, a systematic review of, caregiving, older, terminally ill, qualitative, quantitative, cancer support, mental, support, patient perception, managing symptoms, dying, comfort, and psychosocial. Various Boolean combinations were created with the abovementioned keywords to start a broad search. Care for caregivers is needed across all quality-of-life domains. A cancer diagnosis profoundly impacts the patient and individuals near the patient, such as family and friends. Cancer caregivers and patients exist within a social unit that can be 14 negatively affected throughout the cancer continuum, from diagnosis to end of life. The current literature recognizes the multidimensional needs of caregivers throughout the continuum of the cancer experience. Appraising the quantitative studies requires essential descriptive information regarding how caregiving affects the caregiver physically and emotionally. An estimated 4.6 million people in the United States care for someone with cancer at home (Berry et al., 2017). Numerous qualitative non-experimental studies have assessed cancer caregivers, with sample sizes of 250+ caregivers. Outcome measures from caregiver studies were completed at baseline and repeated at 7-, 12-, 18-, and 24 weeks post-cancer diagnosis (Ferrell et al., 2018). Quantitative studies show that in addition to attending medical appointments (73% of caregivers), cancer caregivers commonly report keeping track of side effects (68%), helping to manage or control symptoms (47%), and administering medicine (34%), among other medical tasks. (Litzelman, 2019). Cancer and cancer-related mortality will increase by 50% (from 14 million to 21 million) and 60% (from 8 million to 13 million), respectively, in 2030, magnifying caregiver burden and burnout (AkpanIdiok et al., 2020). Caregivers report physical, mental, and emotional strain and symptoms associated with providing care. Research shows that cancer caregivers report many health-related issues. Two hundred eighty-one family caregivers in a cross-sectional study show results such as self-efficacy (P =.02), sleep disturbance (P =.03), social support (P =.04), higher scores of depression (P<.01), fatigue (P<.01), and symptoms (P<.01) were significantly associated with higher caregiver burden (Akpan-Idiok, 2020). Twelve studies examined associations between patients' and caregivers' physical morbidity. Fifty-eight percent found associations statistically significant, and 15 one qualitative study identified physical morbidity as a central theme (Streck et al., 2020). Many caregivers have health issues amplified by poor psychological health, distress, poor quality of life, and high stress creating poor physical and mental health (Yang et al., 2022). Oncology caregivers need help and would benefit from a caregiver help process like a smart app. Caregivers may feel unprepared for medical tasks and lack support for proper instruction. Ongoing medical needs include obtaining information about the type of cancer, its treatment, and side effects and getting the best possible care for the survivor. Issues relating to caregivers' daily life, including their ability to balance their care with the demands of caregiving, are most prevalent within the first two years of diagnosis (Alfano et al., 2019). Findings from a metaanalysis and systematic review of intervention studies with caregivers indicate that psychosocial interventions significantly improve the caregivers' ability to cope, reduce care-related burden, and improve the overall quality of life for both the caregiver and the patient (Kaltenbaugh et al., 2017). Increasing the need for caregivers to serve as extensions of the health care team, not only in cancer but also in other diseases such as dementia, elevates caregiving as a national priority. Summary of Literature Review Findings and Application to the Project Supporting caregivers has tangible benefits regarding the quality of care and implications for outcomes for the person with cancer (Litzelman, 2019). Formal support offered by nurses may improve mental and physical health, improve patient outcomes, and reduce the long-term financial toll of oncology care. Investigations and studies have shown the effectiveness of a caregiver needs-based support smart app (Litzelman, 2019). Randomized control trials with caregivers, including clinical trials in facilities, have taken place to examine caregiver needs. In an extensive review, Alfano et al. (2019) suggested that the way forward in this project; this 16 project will use the information from the literature to create evidence-based education for caregivers and patients that teach them ways to care for themselves and the person needing care. Six studies evaluated psychological distress, and two evaluated caregiver burden. A tailored program allowing individualized goal setting with real-time interaction with a nurse had clear and positive effects on caregiving-specific distress with a trend toward improving feelings of mastery (Boel et al., n.d). The potential to reduce stress in caregivers and oncology patients is very diverse. Supportive interventions to assist caregivers and patient outcomes show promise that they can effectively reduce anxiety, depression, and burden (Boel et al., n.d). Cancer caregivers are women (58%), and most have less than a college degree (60%). The average caregivers for cancer patients are fifty-three years old (four years more senior than non-cancer caregivers). Most cancer caregivers care for a relative (88%), and six out of ten cancer caregivers provide care to someone age 65 or older (National Alliance for Caregiving, 2017). This National Alliance for Caregiving (2017) study consisted of 122 caregivers. Cancer caregivers spend an average of 32.9 hours a week caring for their loved ones. More than four in ten (43%) caregivers are performing complex medical tasks without prior preparation (National Alliance for Caregiving, 2017). Most cancer caregivers indicate they need more help or information about at least one caregiving-related topic (84%). Four in ten cancer caregivers want more help or information about life and end-of-life decisions (National Alliance for Caregiving, 2017). Project Methodology Over the past decade, there has been a notable increase in the development of psychosocial interventions explicitly focused on addressing the needs of cancer caregivers. There 17 is an increased recognition that meeting caregivers' support needs is critical (Applebaum et al., 2021). The standardized creation of a caregiver app would address these issues. Like patient medical records, caregiver records will be created by healthcare professionals who provide them with services or support in person or through the app (Applebaum et al., 2021). When the patient record is developed at the oncologist's office, the caregiver will sign a HIPPA form to clarify how the caregiver's information is recorded and used. All privacy practices will be implemented for patients and caregivers alike. The CBS and the KCSS will be the starting point of assessment to begin the app. By completing the screening initiatives and the burden and stress surveys, the assessments will give the healthcare team and the app the ability to identify caregivers in need. Screening with a PHQ9-9 depression scale will also help identify caregivers who lack psychosocial support and may be experiencing anxiety, depression, and other risks identified by the screening assessments (Applebaum et al., 2021). Healthcare professionals will then provide education on how to get started with the app tailored to the caregiver's needs. Description and Development of Project Deliverables Three scales (CBS, KCSS, PHQ9-9) are used to aid in implementing this project. To better help the caregiver, these three scales will assess a patient's most significant needs at a time in the cancer journey. In addition, they will better assess and individually address unique barriers. The first scale used (CBS) in the caregiver app will assess caregiver burden; the second (KCSS) assesses individualized stress levels; the third (PHQ9-9) assesses depression associated with caregiving or other issues. High levels of caregiver burden are associated with caregivers developing health problems and an increased risk of death; these scales will lead the healthcare team to know what help is needed (Sadak et al., 2017). 18 The KCSS can help guide the app toward interventions to reduce burdens such as physical, emotional, time-dependence, developmental, and social (Graessel et al., 2018). The PHQ9-9, KCSS, and CBS work together within the caregiver app to allow caregivers to express their level of stress in a relevant and accessible format. These surveys can also be used to monitor changes in stress levels over time as the situation changes. The three scales will help one to understand the specific dimensions that most affect the caregiver (Graessel et al., 2018). These scales allow the clinician to follow the patient's and caregiver's conditions through the cancer care process (Sadak et al., 2017). An educational handout will be given to caregivers on their first visit. The Caregiver Burden Scale (CBS) The CBS is a 22-item scale rated from 0 (strongly disagree) to 4 (strongly agree). The total score ranges from 0 to 30 points, and higher scores indicate a more significant caregiver burden (see Appendix A). The CBS is grouped into five dimensions general tension, isolation, disappointment, emotional involvement, and environment (Graessel et al., 2018). The CBS covers important areas for caregivers, such as emotional health, mental well-being, physical overload, social support, finances, and home environment. The scale is intended to measure the “stress” from the caregiving situation precisely. The Kingston Caregiver Stress Scale (KCSS) The KCSS assessment form allows caregivers to express their stress around caregiving (See Appendix B). Caregivers' ability to provide high-quality care and keep their care recipient at home often depends on the caregiver's health and well-being (Hopkins & Kilik, 2016). The KCSS has three conceptual domains that capture subjective stress related to caregiving, family, 19 and financial issues and take less than five minutes to administer. The KCSS is a caregiver selfreport tool or a clinician-administered interview (Hopkins & Kilik, 2016). Patient Health Questionnaire Depression Scale (PHQ9-9) The PHQ9–9 is a multipurpose instrument for screening, diagnosing, monitoring, and measuring the severity of depression. The PHQ9–9 is brief and helpful in determining if caregiver stress and burnout may become more serious; It can be administered repeatedly, reflecting the worsening or improvement of depression in response to treatment (Cameron et al., 2018). PHQ9-9 can also help assess if treatment is needed for caregivers. The PHQ9–9 consists of nine questions corresponding to the nine diagnostic criteria for major depressive disorder covered in the Diagnostic and Statistical Manual of Mental Disorders (see Appendix C). The PHQ-9 is the nine-item depression scale of the patient health questionnaire. (Cameron et al., 2018). Caregiver Education handout The next deliverable is an educational handout for caregivers (Appendix E). The handout will be given to caregivers upon the diagnostic visit with the oncology team. The handout contains information and education about how to log in to the caregiver app and what they can do in the app. The oncology RN will encourage caregivers to use the app for documentation and resources. This handout guides the caregiver step by step to access the smart app. Plan and Implementation Process This MSN project hopes to transform care for cancer caregivers, reduce stress, and improve the quality of care for oncology caregivers by implementing an app to help alleviate 20 stress and improve their lives. The smart app will help to place cancer caregivers at the center of the care team that provides high-value, equitable, evidence-based care. The caregiver app aims to improve care coordination, caregiver quality-of-life, and health outcomes for oncology caregivers, resulting in better outcomes for cancer patients and their caregivers (Ferrell et al., 2018). Caregivers will start by taking the assessments to determine where the caregiver's level of need starts. Through electronic devices, caregivers can provide feedback about their overall health outcomes, such as those related to their physical functioning, psychological health, and other symptoms. The smart app will then provide education, resources, and referrals to local and national resources (i.e., physical/occupational therapy, dietitians, home health, and financial counselors) and any foundations or other resources needed (Ferrell et al., 2018). Interdisciplinary Teamwork Core members of the multidisciplinary cancer team usually include an oncologist (medical, surgical, radiation), a pathologist, a radiologist, and nurses. The team's makeup varies depending on the tumor site and the health service (Silbermann et al., 2018). A team approach that includes geriatricians, nurses, chaplains, social workers, and therapists is valuable in supporting cancer patients and their caregivers to ensure appropriate quality care, including endof-life care. Older caregivers pose unique problems, as their physical and psychological needs may differ from those of younger caregivers, which means adding a gerontologist to the team proves beneficial (Silbermann et al., 2018). Due to the large number and range of healthcare providers who may be involved with a caregiver app, there will undoubtedly be better communication between the oncology team, caregivers, patients, and care coordination. The care goal must be continually evaluated, with 21 input from the caregiver and the oncology team (Silbermann et al., 2018). The oncology team will monitor messages, trends, and medication issues through the app, and nurses will be alerted via secure message of any problems that need addressing. The caregiver must communicate with the oncology team to prevent stress and burnout. Caregivers emphasized different communication needs at various stages of the cancer journey. Caregivers need additional information during each period, from patient diagnosis to the start and end of treatment. At the same time, there were significant differences in caregivers' communication information needs from diagnosis to the start of treatment and from treatment initiation to completion. Caregiver's needs are different through all these transitional points of patient care (Litzelman, 2019). The team's social workers and mental health therapists will work with the caregiver's stressors and jointly prepare intervention programs with a multidisciplinary approach. Silbermann et al. (2018) found that most issues older adult patients face are psychosocial and must be through the collaboration of a social worker, the palliative care nurse, and other multidisciplinary team members, including geriatricians and their specialties. These specialties may include hospice and end-of-life care (Silbermann et al., 2018). Timeline The healthcare team will promote the caregiver app frequently. Oncology patients will be given access to their patient portal at the first oncology visit, and caregivers will be given the same access and instructions to access the caregiver app. The team will assist caregivers and patients in connecting to the smart app. A doctor, nurse, social worker, and other health professionals will collaborate with patients and their family members to determine what services a caregiver needs upon completion of the screenings 22 applied in the first pages of the app. Depending on the caregiver's needs, the oncology team will build a plan through the app within six weeks of a cancer diagnosis. The multidisciplinary team will do reassessments every three months. A member of the oncology team will be assigned as the coach and will be available by phone to provide technical support and can answer technical questions through the app. Plan for Evaluation of Project The evaluation and success of the smart app will be determined by comparing the pre-and post-questionnaire results. A lower rating on the CBS and KCSS will indicate improvement in caregiver stress. The lower results suggest that using the smart app has improved stress, burden, healthcare, and caregiver quality of life. In addition to this comparison, after six months of using the smart app, the caregiver will be asked to rate the effectiveness of the help they received. Caregivers can also offer advice and suggestions to help make the smart app more user-friendly and improve the app. A questionnaire will be given to the oncology care team to determine if the app has added stress or helped provide clinical care for the patient and caregiver. Ethical Considerations Interviews with oncology caregivers revealed that many caregivers primarily focus on their survivor's health, not their own (National Cancer Institute, 2022). Quantitative analysis indicated that the number of caregivers participating in a caregiver group might be low because of this focus (Akard et al., 2022). The healthcare team would promote the importance of caregiving and quality of life in promoting the app. Caregivers should also understand that their health is as important as cancer patients, and Caregivers need to know that their well-being is essential for the immense caregiving requirements. 23 Essential strategies will be included while using the caregiver app; HIPPA-compliant technology will protect individuals' personal information, and caregivers will also be able to access privacy setting options in the app (Akard et al., 2022). This app can raise concerns that this type of communication could inadvertently place additional strain on caregivers and patients whose typical interactions do not include open discussions about their challenges. The patient's knowledge that their caregiver is struggling could exacerbate patient distress and guilt (Howard et al., 2023). Discussion Caregivers of patients with cancer support them through the disease process regardless of their own needs, but the real burden on caregivers is not well examined (Berry et al., 2017). Caregivers often have unmet needs leading to poor health and poor quality of life. This MSN project describes the development of a support intervention app for oncology caregivers to help them identify and capitalize on resources to support them through this difficult time. Caregiving is a critical part of cancer care, and caregivers are often unprepared and overwhelmed by this role (Howard et al., 2023). Caregivers have many unmet needs and must learn to simultaneously navigate cancer care with caring for themselves (Howard et al., 2023). Studies have demonstrated that engaging cancer caregivers through technology-enabled structured symptom collection has several benefits (Oakley-Girvan et al., 2021). Given the high utilization of mobile technologies, even among underserved populations and in low-resource areas, a cancer caregiver mobile app will provide a meaningful access point for caregivers to promote a higher quality of life for themselves and the cancer patient. Six out of ten individuals nationwide were offered access to their patient healthcare portal, and nearly 40 percent accessed their records at least once in 2020 (Boel et al., n.d). Almost four in ten patient portal users 24 accessed their portal through a smartphone health app in 2020 (Boel et al., n.d). When healthcare providers encourage individuals to access their patient portal, they are more likely to utilize this resource. Individuals accessed and used their portal at higher rates when encouraged by their healthcare team compared to those not encouraged by their team (Oakley-Girvan et al., 2021). Evidence-based Solutions for Dissemination This project will provide an opportunity to gain knowledge from the studies shared with oncology caregivers. As the knowledge is obtained, it will be shared with oncology clinicians so that the patient and caregiver needs can be applied to changes in the clinical setting. Along with the smartphone app, caregivers will complete three surveys (1) Caregiver Demand Scale, (2) Kingston Caregiver Stress Scale, (3) PHQ-9-9 Depression Scale; these surveys are used to identify stress, burnout, depression, and any other needs of the caregiver. These surveys will help to improve care delivery and outcomes to address caregiver needs and provide a variety of supportive interventions. The oncology team will actively disseminate educational information about the smart app to every cancer caregiver and patient to increase motivation to use the app and improve the ability to use and apply the strategies. Information collected in the app can also be provided to other healthcare professionals and physicians if given approval and access by the patient. Finally, this project will be shared with WSU faculty and peers through a presentation. Significance to Advance Nursing Practice Nurses strive to care for their patients the best they can; caregivers can provide feedback about their overall care and the cancer patient's experience. Physicians can be alerted of ways to promote better health outcomes related to symptoms, physical functioning, and behavioral health through an electronic device (Oakley-Girvan et al., 2021). Studies have found an increase in 25 health-related quality of life and a decrease in emergency room visits and hospitalizations for caregivers who were provided with a computer–based symptom reporting system making this a complementary perspective to patient care (Oakley-Girvan et al., 2021). Additionally, caregivers and patients will receive enhanced, focused services (Berry et al., 2017). Caregivers can log on 24/7 and access real-time resources and navigation services. They will also be able to follow links that will give them access to additional information about patient needs, symptom management, quality of life, and psychosocial health needs, among other topics. An oncology caregiver app will assist nurses in empowering caregivers to become members of the cancer care team. The app will give caregivers control over their lives while caring for the patient. An oncology caregiver app can potentially cater to caregivers about resources the patient and caregiver will need, saving time for nurses and caregivers. The app will strengthen caregivers' control over their lives and provide greater peace of mind (Berry et al., 2017). A cancer caregiver mobile app shows promise as a solution for healthcare needs across the cancer continuum and can improve healthcare outcomes (Berry et al., 2017). Implications Few smartphone apps cater to oncology patients, and even fewer focus on oncology caregivers (Désormeaux-Moreau et al., 2021). However, there has been growth in smartphone apps related to caring for patients with dementia and Alzheimer's (Désormeaux-Moreau et al., 2021). Focusing on the oncology caregiver is important due to the millions of cancer patients 26 and caregivers going through this challenge and the millions more diagnosed with cancer yearly. Many caregivers put their own needs and feelings aside to focus on caring for the cancer patient. The healthcare team must educate the oncology caregiver on the importance of caring for themselves even more after the cancer diagnosis. Given the high utilization of smartphones and apps, even underserved populations in lowresource areas will be provided an access point for the extra help they need. In order to address low technological literacy in targeted populations, phone coaching and app technical support will provide participants with instructions on downloading, using, and managing the apps via smartphones, iPad, and desktops. Recommendations Current technologies for caregiver apps are either ineffectively distributed or do not meet the needs of the oncology caregiver (Wittenberg et al., 2019). To incorporate and implement a cancer caregiver app, feedback from caregivers and physicians needs to be incorporated into the development of such tools (Wittenberg et al., 2019). The design plan of the app would include communication, talking tips, and resources for contact with the patient and caregiver. It would also allow the caregivers to record questions for healthcare providers and manage their to-do lists. Gaps in knowledge remain, including whether caregivers prefer technology in support over face-to-face communication and what platforms are best for communicating specific issues (Wittenberg et al., 2019). It has been frequently mentioned that caregivers feel overwhelmed with too much information and financial considerations and have emotional issues, including stress and depression. Clinical staff, care partners, and patients agreed that an app designed to help caregivers would be welcome (Désormeaux-Moreau et al., 2021). The next steps include testing 27 this app with a small population, providing data recorded by caregivers about their symptoms to the clinical team, and ultimately testing the app’s impact on specific outcomes. Specific ideas from caregivers for helpful smartphone app modules include communication tips for patients and caregivers to use their time with the clinical team better and a dashboard or status bar that would track the patient through the care process, from the initial treatment through all treatments provided by different specialties. Caregivers also have shown interest in modules on medication, diet, self-care, and reminders (Désormeaux-Moreau et al., 2021). A version in Spanish would also be implemented. Conclusions Whatever the specific circumstances, the role of a cancer caregiver is an enormous responsibility and can be very stressful. Caregivers must prioritize their health and well-being to provide the best care for the cancer patient. There are beneficial tools right in the palms of our hands which will change the nature of oncology care and nursing (Ngo et al., 2020). 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The Family Caregiving Collaborative. https://nursing.utah.edu/research/groups-projects/family-caregiving-initiative. Accessed November 18, 2022. Watson, R., Preedy, V., (2010). Caregiver burden scale. Handbook of Disease Burdens and Quality of Life Measures. Springer, https://doi.org/10.1007/978-0-387-78665-0_5254 Wittenberg, E., Xu, J., Goldsmith, J., & Mendoza, Y. (2019). Caregiver communication about cancer: Developing an m-health resource to support family caregiver communication burden. Psycho-oncology, 28(2), 365–371. https://doi.org/10.1002/pon.495 33 Appendix A Caregiver Burden Scale Caregiver Name: Date: The following questions reflect how people sometimes feel when caring for another person. After each question, circle how often you think that way: never, rarely, sometimes, frequently, or nearly always. There are no right or wrong answers. Never Rarely Sometimes Frequently Nearly always 2 3 4 2 3 4 2 3 4 1 1. Do you feel your relative asks for more help than they need? 0 2. Do you feel that because of the time you spend with your relative, 1 0 Do you not have enough time for yourself? 3. Do you feel stressed between caring for your relative and trying to 1 0 Meet other responsibilities for your family or work? 4. Do you feel embarrassed over your relative's behavior? 1 2 3 4 0 1 2 3 4 0 1 2 3 4 0 5. Do you feel angry when you are around your relatives? 6. Do you feel your relative currently negatively affects your relationship with other family members or friends? 7. Are you afraid about what the future holds for your relative? 1 0 2 3 4 8. Do you feel your relative is dependent on you? 0 1 2 3 4 9. Do you feel strained when you are around your relative? 0 1 2 3 4 0 1 2 3 4 2 3 4 2 3 4 2 3 4 1 2 2 3 3 4 4 0 1 2 3 4 16: Do you feel that you will be unable to take care of your relative much longer7 0 1 2 3 4 17. Do you feel you have lost control of your life since your relative's illness7 0 1 2 3 4 18. Do you wish you could leave the care of your relative to someone 0 1 2 3 4 10. Do you feel your health has suffered because of your involvement with your relative? 11. Do you feel you do not have as much privacy as you would like because of your 1 0 relative? 12. Do you feel your social life has suffered because you care for your relative? 0 13. Are you uncomfortable about having friends over because of your relative? 0 14. Do you feel that your relative seems to expect you to take care of him 0 1 1 Or her, as if you were the only one they could depend on? 15. Do you feel that you do not have enough money to care for your Relative, in addition to the rest of your expenses? Else? 19. Do you feel uncertain about what to do about your relative? 0 1 2 3 4 20. Do you feel you should be doing more for your relative? 0 1 2 3 4 21. Do you feel you could better care for your relative? 0 1 2 3 4 22. How burdened do you feel in caring for your relative? 0 1 2 3 4 Total score: SCORING KEY: 0 to 20 = little or no burden; 21 to 40 = mild to moderate burden; 41 to 60 = moderate to severe burden; 61 to 88 = severe burden. (Watson & Preedy, 2010) Appendix B 34 K C S S ingston tress Patient Name: Caregiver: Lives in: Community aregiver cale (KCSS) Relation to Patient Long Term Care Facility Case #: Date: Other Some people report feelings of stress surrounding certain aspects of caregiving. To what extent, if any, do these apply to you in your caregiving role to your spouse or relative? Using a 5-point rating scale, where 1 equals no stress, and 5 equals extreme stress, indicate the extent of the stress or frustration you feel surrounding the following issues. 1 Feeling NO Stress (Coping fine, no problems) 2 Some Stress 3 Moderate Stress 4 A lot of Stress 5 Extreme Stress (Feeling at “end of rope”, health at risk) CARE GIVING ISSUES TO WHAT EXTENT... 1 Are you feeling overwhelmed, overworked, and overburdened? 1 2 3 4 5 2 Has there been a change in your relationship with your spouse/relative? 1 2 3 4 5 3 Have you noticed any changes in your social life? 1 2 3 4 5 4 Are you having any conflicts with your previous daily commitments (work/volunteering)? 1 2 3 4 5 5 Do you feel confined or trapped by the responsibilities or demands of caregiving? 1 2 3 4 5 Do you ever have feelings related to a lack of confidence in your ability To provide care? 1 2 3 4 5 Do you have concerns regarding the future care needs of your Spouse/relative? 1 2 3 4 5 6 7 FAMILY ISSUES TO WHAT EXTENT... 8 Are you having any conflicts within your family over care decisions? 1 2 3 4 5 9. Are you having any conflicts within your family over the support you receive in providing care? 1 2 3 4 5 10. Are you having any financial difficulties associated with caregiving? (Hopkins & Kilik, 2016) Appendix C 35 Patient Health Questionnaire (PHQ-9) Patient Name: Date: Not at all Several days More than half the days Nearly every day Not difficult at all Somewhat difficult Very difficult Extremely difficult 1. Over the last two weeks, how often have you been bothered by the following problems? a. Little interest or pleasure in doing things b. Feeling down, depressed, or hopeless c. trouble falling/staying asleep, sleeping too much d. Feeling tired or having little energy e. Poor appetite or overeating f. Feeling bad about yourself or that you are a failure or have let yourself or your family down g. trouble concentrating, such as reading the newspaper or watching television. h. Moving or speaking so slowly that other people could have noticed—or the opposite; being so fidgety or restless that you have been moving around more than usual. i. Thoughts that you would be better off dead or hurting yourself. 2. If you checked off any problem on this questionnaire so far, how difficult have these problems made it for you to do your work, take care of things at home, or get along with others? 36 PHQ-9* Questionnaire for Depression Scoring and Interpretation Guide For physician use only. Scoring: Count the number (#) of boxes checked in a column. Multiply that number by the value below, then add the subtotal to produce a total score. The possible range is 0-27. Use the table below to interpret the PHQ-9 score. Not at all Several days than half the days (#) day (#) x0= (#) x1= More x2= Nearly every (#) x3= Total score: Interpreting PHQ-9 scores Actions Based on PH9 Score Minimal depression 0-4 Mild depression 5-9 Moderate depression 10-14 Moderately severe depression 15-19 Severe depression 20-27 * PHQ-9 is described in more detail at PHQ-9.com Score <4 Action The score suggests the patient may not need depression treatment > 5 – 14 The physician uses clinical judgment about treatment based on the patient's duration of symptoms and functional impairment. > 15 Warrants treatment for depression, using antidepressants, psychotherapy, and/or a combination of treatments. (Kroenke & Spitzer 2002). 37 Appendix D Implementation Timeline Three months before the app launch date The oncology team will meet with a professional designer to create an oncology caregiver app. Survey questions will be given to oncology patients for 1-3 months. Information will be collected via the oncology team, and patient survey questions will be given to the app designer. Day 1 diagnosis 2-3 months postcancer diagnosis Patient and caregiver diagnosed with cancer in-office visit provided education about oncology app. RN and coach will provide a survey to assess caregiver understanding and RN and coach will assist the caregiver with sign-in and survey questions and answer any questions from the caregiver. Evaluate the program and make any necessary improvements. Ongoing Continue with the evaluation of the smart app. Implement improvements as needed. Caregiver Timeline Day 1 diagnosis The patient is diagnosed with cancer and meets with the oncology team. The oncology team RN will educate the patient caregiver about the smart oncology app (handout). Within the first two weeks of diagnosis The caregiver will sign into the app and complete the three surveys with help from the coach if needed. 2-3months postcancer diagnosis A survey will be provided to the caregiver via app or clinic visit regarding issues or complaints with the app. Ongoing The oncology team, RN, and coach will continue assessing the caregiver's wellbeing and providing necessary education. technology WWW.OCARE.ORG 38 Appendix E Oncology Caregiver App • TA LK WI TH Y OUR TE AM Understand your feelings. Ask for Help! Caring for the Caregiver. • • CA LL A COA CH A coach will help you with signing in and log in information. • Call- 1- 800- CA RE 24/ 7 • Visit Oc ar e. or g • • Com pl et e t he 3 c ar egiv er yourself care of a cancer patient. Instead, Caring for your body it provides ways for a friend or and mind family caregiver to take care of Understand your themselves while caring for feelings and ask for someone with cancer. It gives Res our c es at y our help. you communication and self- How to cope with your care tips to focus on your needs feelings while helping your loved one too. • Cons ul t wi t h Onc ol ogy t eam online. • • This app is not about how to take surv eys . fi nger tips • • How to make time for Keep tr ack of appts . FI ND MEA NI NG DURI NG CA NCE R • 24/7 Cancer help technology cons ulti ng Resources for all your needs. Call a Coach Tel 1-800-CARE WWW.OCARE.ORG