Family Caregivers’ Unmet Needs in Long-term Cancer Survivorship

ObjectivesTo review the family caregivers’ unmet needs in the long-term phase of survivorship to identify unique challenges faced by family caregivers.Data SourcesResearch-based articles and published reports.ConclusionFamily caregivers diverge into three distinct groups in the long-term survivorship phase: those remaining in care, those whose patients have survived and where care is no longer needed, and those whose patients have died. Their primary unmet needs vary by the different caregivership trajectories.Implications for Nursing PracticeComprehensive understanding of family caregivers’ unmet needs is required to develop family caregiver care plans in long-term survivorship.     

Older Unpaid Carers’ Experiences Supporting Adults with Cerebral Palsy and Complex Communication Needs in Hospital

Older unpaid carers provide vital support to their adult sons or daughters with cerebral palsy who have complex communication needs during hospital stays. To date, there is little research into their experiences or the impact of providing such care on the carer and other family members. Knowledge of the experiences of the older unpaid carer is needed to inform development of a) strategies for supporting older carers of adults with disability who are unable to speak in hospital, and b) other alternatives for provision of support to these adults during periods of hospitalization. Such information could be used in training health care providers to adequately care for the adult with cerebral palsy and complex communication needs when the older carer is no longer able to provide support. This review will summarize the literature relating to older unpaid carers of adults with cerebral palsy and complex communication needs in hospital, and identify directions for future research and development in the field of supporting older carers of adults with complex communication needs.

Caregivers’ Experiences Derived from Everyday Occupations

Aims: The stress of caring for others can put caregivers’ health at risk, yet existing occupational therapy interventions largely focus on providing direct care. Capturing caregivers’ daily lived experiences may yield insights enabling occupational therapists (OTs) to better meet a broader scope of their needs. This phenomenological study aimed to uncover the daily occupations and experiences of spousal caregivers (n = 6). Methods: Data were collected over 4 months using a time-use diary (the Daily Experiences of Pleasure, Productivity, and Restoration Profile), individual interviews, and a focus group. Results: Inductive content analysis resulted in three themes: caregivers felt conflicted by experiences of pleasure and restoration outside of caregiving, occupational experiences revealed changes in daily patterns of life, and past occupational experiences influenced perceptions of caregiving. Conclusion: These findings emphasize the need for OTs to expand their roles with caregivers, supporting their ability to provide care and maintain their health and well-being.     

Dealing With the Unthinkable: Bladder and Colorectal Cancer Patients’ and Informal Caregivers’ Unmet Needs and Challenges in Life After Ostomies

ObjectivesWe examined patient and informal caregiver unmet needs to identify areas for targeted supportive care interventions and programs to enhance both patient and informal caregiver experience.Data SourcesA total of 30 patients who underwent ostomy surgeries for bladder or colorectal cancers and 13 informal caregivers participated in the study. Patients were enrolled at the Icahn School of Medicine at Mount Sinai between 2017 and 2018. Qualitative data were collected by individual interviews, audiotaped, and transcribed verbatim. Transcribed data were iteratively analyzed using Atlas.ti to explore patient and caregiver unmet needs.ResultsPatients and informal caregivers reported having insufficient psychological preparation for ostomy surgeries, and very limited hands-on training on stoma care and utility of stomal appliances. Unmet psychological needs related to depression, anxiety, and distress caused by changes in body image and sexual, urinary, and bowel function were reported. Patients and caregivers also reported significant patient medical needs in the acute postoperative period including pain, fatigue, sleep disturbance, inflammation, and complications resulting in hospital readmissions. Colorectal cancer patients specifically experienced significant challenges with changes in diet and nutrition that contributed to ostomy care burden. Both patients and caregivers recommended seeking psychological and social support to enhance both patient and caregiver emotional adjustment to life after ostomies.ConclusionMeeting patient and informal caregiver unmet informational and supportive care needs is imperative to improve their quality of life and adjustment.Implications for Nursing PracticeAn effective supportive care plan should be designed and utilized in clinical care to improve ostomy patients’ and caregivers’ outcomes.     

Assessing Research Participants’ Perceptions of their Clinical Research Experiences

Introduction: Participants’ perceptions of their research experiences provide valuable measures of ethical treatment, yet no validated instruments exist to measure these experiences. We conducted focus groups of research participants and professionals as the initial step in developing a validated instrument. Methods: Research participants enrolled in 12 focus groups, consisting of: (1) individuals with disorders undergoing interventions; (2) in natural history studies; or (3) healthy volunteers. Research professionals participated in six separate groups of: (1) institutional review board members, ethicists, and Research Subject Advocates; (2) research nurses/coordinators; or (3) investigators. Focus groups used standard methodologies. Results: Eighty‐five participants and 29 professionals enrolled at eight academic centers. Altruism and personal relevance of the research were commonly identified motivators; financial compensation was less commonly mentioned. Participants were satisfied with informed consent processes but disappointed if not provided test results, or study outcomes. Positive relationships with research teams were valued highly. Research professionals were concerned about risks, undue influence, and informed consent. Conclusions: Participants join studies for varied, complex reasons, notably altruism and personal relevance. They value staff relationships, health gains, new knowledge, and compensation, and expect professionalism and good organization. On the basis of these insights, we propose specific actions to enhance participant recruitment, retention, and satisfaction. Clin Trans Sci 2011; Volume 4: 403–413     

Communication Dilemmas in the Context of Cancer: Survivors’ and Partners’ Strategies for Communicating Throughout Survivorship

More people are now living longer beyond cancer treatment and are facing the complexities associated with survivorship. Communicating amid a cancer experience, for example, can be difficult for couples, and survivors must face these challenges for extended periods of time. The current study employed a communication perspective to explore couples’ conversations throughout cancer survivorship. In-depth interviews with 35 cancer survivors and 25 partners yielded insight into the specific communicative challenges couples face after completing cancer treatment. The data highlight cancer's lingering uncertainties and are discussed in terms of the dyadic challenges inherent in couples’ communicative efforts.     

Postoperative Pain: Nurses’ Knowledge and Patients’ Experiences

The aim of this study was to determine nurses’ knowledge and attitudes regarding postoperative pain and identify postoperative patients’ pain intensity experiences. The assessment and management of acute postoperative pain is important in the care of postoperative surgical patients. Inadequate relief of postoperative pain can contribute to postoperative complications such as atelectasis, deep vein thrombosis, and delayed wound healing. A pilot study with an exploratory design was conducted at a large teaching hospital in the eastern United States. The convenience samples included 31 nurses from the gastrointestinal and urologic surgical units and 14 first- and second-day adult postoperative open and laparoscopic gastrointestinal and urologic patients who received patient-controlled analgesia (PCA). The Knowledge and Attitudes Survey Regarding Pain was used to measure nurses’ knowledge about pain management. The Short-Form McGill Pain Questionnaire (SF-MPQ) was used to measure patients’ pain intensity. The nurses’ mean score on the Knowledge and Attitudes Survey Regarding Pain was 69.3%. Patients experienced moderate pain, as indicated by the score on the SF-MPQ. There is a need to increase nurses’ knowledge of pain management.     

Surrogate End-of-Life Care Decision Makers’ Postbereavement Grief and Guilt Responses

This article examined differences in familial/friend surrogate decision makers’ (N = 93) postbereavement grief and guilt associated with decisions to either prioritize comfort or longevity in determining end-of-life care for decisionally incapacitated adult palliative loved ones. Results demonstrated that participants prioritizing the longevity of loved ones experienced significantly and meaningfully higher levels of grief, complicated grief, and trauma related guilt than those who prioritized comfort.     

Military and Veteran Caregivers’ Perspectives of Stressors and a Mind-Body Program

There are over one million post-9/11 military caregivers in the United States who face a variety of stressors inherent to caring for an incapacitated loved one. Mind-body interventions, such as the Stress Management and Resilience Training Relaxation Response Resiliency Program (SMART-3RP), have been shown to reduce stress and improve overall health and functioning. The present qualitative study aims to explore stressors experienced by military caregivers in their caregiving role and to assess attitudes towards the virtual delivery of the SMART-3RP. We conducted two focus groups with a total of 13 caregivers [M (SD) age?=?41.25 (11.49); 92% female], and participants subsequently completed a survey on their caregiving experiences. Focus groups were conducted remotely via Google Hangouts by two doctoral-level clinicians, transcribed verbatim, and coded using inductive thematic analysis. Themes related to stressors of caregiving included: logistical stressors faced by caregivers, demands of the caregiving role, concerns about children, worries about the future, exacerbation of the caregiver’s physical/mental health concerns, social dynamics, sacrifices made for their veteran in the caregiving role, and relationship dynamics between the veteran and caregiver. Military caregivers found the SMART-3RP logical and felt as though it could be helpful to them. Caregivers expressed interest in a brief, virtual version of the SMART-3RP. Using the findings from the current study, we are adapting the SMART-3RP to be administered virtually as a podcast-based intervention.     

Bereaved Families’ Experiences of End-of-Life Care at Home for Older Adults with Non-Cancer in South Korea

The aim of this study was to gain an understanding of the experiences of families who care for older adults with non-cancer diseases at the end of their lives. The data accrued through in-depth interviews, analyzed using Giorgi’s phenomenological method: caregiving burden; situational responsibility; consolation by support; and mourning for the deceased. In Korean culture, adult children had the responsibility of caring for their aged parents as a burden of caregiving and as a main motive for caregiving. Educational and psychological support programs for caregivers should aim to boost confidence, rather than merely focusing on their burden.     

Do Caregiver Experiences Shape End-of-Life Care Perceptions? Burden,Benefits, and Care Quality Assessment

ContextResearchers, hospices, and government agencies administer standardized questionnaires to caregivers for assessing end-of-life care quality. Caregiving experiences may influence end-of-life care quality reports, which have implications for caregiver outcomes, and are a clinical and policy priority.ObjectivesThis study aims to determine whether and how caregivers' end-of-life care assessments depend on their burden and benefit perceptions.MethodsThis study analyzes data from 391 caregivers in the 2011 National Study of Caregiving and their Medicare beneficiary care recipients from the 2011–2016 National Health and Aging Trends Study. Caregivers assessed five end-of-life care aspects for decedents. Logistic regression was used and predicted probabilities of caregivers positively or negatively assessing end-of-life care based on their burden and benefit experiences calculated. Analyses adjusted for caregiver and care recipient demographic and health characteristics.ResultsNo or minimal caregiving burden is associated with ≥0.70 probability of caregivers reporting they were always informed about the recipient's condition and that the dying person's care needs were always met, regardless of perceived benefits. High perceived caregiving benefit is associated with ≥0.80 probability of giving such reports, even when perceiving high burden.ConclusionCaregiver burden and benefit operate alongside one another regarding two end-of-life care evaluations, even when years elapse between caregiver experience reports and care recipient death. This suggests that caregiver interventions reducing burden and bolstering benefits may have a positive and lasting impact on end-of-life care assessments.     

Experiences of and factors associated with dietary sodium adherence in heart failure from patients’ and their caregivers’ perspectives: A qualitative study

This study explored experiences of dietary sodium adherence among patients with heart failure and their caregivers. Qualitative data were collected from 22 patients and 18 caregivers using an interview guide and were analyzed using content analysis. Four themes were (1) lack of adherence to low-sodium diet, (2) several barriers to dietary sodium adherence, (3) a few facilitators of dietary sodium adherence, and (4) distorted perceptions of dietary education from healthcare providers. The majority of patients had poor dietary sodium adherence. Distorted perceptions, insufficient knowledge, disadvantages of dietary sodium adherence, and lack of family support were barriers to dietary sodium adherence, and family support was a facilitator. The majority of patients received dietary education from their healthcare providers but had little knowledge about the detailed content and the connection to heart failure management. More effective interventions reflecting patients’ and caregivers’ dietary experiences need to be developed and delivered.     

Caregivers’ experiences with the selection and use of assistive technology

Qualitative data from a mixed-methods clinical trial are used to examine caregivers’ experiences with the selection and use of assistive technology to facilitate care recipients’ independence. Through a thematic analysis of interviews from 27 caregivers, three broad themes were identified. “A partial peace of mind” described the generally positive psychological impacts from assistive technology, mainly reduced stress and a shift in caregiving labour from physical tasks to a monitoring role. “Working together” explored the caregivers’ experiences of receiving assistive technology and the sense of collaboration felt by caregivers during the intervention process. Finally, “Overcoming barriers“ addressed two impediments to accessing assistive technology: lack of funding and appointment wait times for service providers. The findings suggest that assistive technology provision by prescribers plays a beneficial role in the lives of caregivers, but access to such benefits can be hampered by contextual constraints.

• Implications for rehabilitation

• The study findings have a number of implications for rehabilitation practice:

• Family caregivers can be instrumental in determining what assistive technology is needed and then procured. Their involvement in the selection process is desirable because assistive technology may have both positive and negative impacts on them, and they themselves may use the devices chosen.

• Involving family caregivers as more active partners in the process of assistive technology provision may represent a greater time investment in the short term, but may contribute to better long-term outcomes for care recipients and caregivers as well.

• Limited access to funding and long appointment wait times are potential barriers to obtaining necessary assistive technologies.

     

Radiation Therapy Students′ Knowledge,Attitudes, and Beliefs about Palliative and End-of-Life Care for Cancer Patients

Background and PurposeAlthough radiation therapy students are highly interested in providing palliative and end-of-life care (PEOLC), students often lack understanding of what palliative care is and express a lack of confidence when interacting with palliative patients. This study examined radiation therapy students' existing knowledge, attitudes, and beliefs toward PEOLC for cancer patients and how professional and personal experiences influenced those factors.MethodsThis study used a cross-sectional online questionnaire. After informed consent, data were collected from a sample of students in an undergraduate radiation therapy program in Canada. Questions were both quantitative and qualitative in nature. Responses were comprised of Likert scales and true or false responses, a case study–based vignette and several short open-ended questions.ResultsSixty-one students completed the questionnaire; the response rate was 42%. Responses indicate students had an incomplete understanding of PEOLC principles despite reporting positive views and interest in the topic. Professional and personal experiences improved students' knowledge regarding the role of PEOLC and attitudes and beliefs became more positive with increased real-life experiences.ConclusionsExperiential learning influences students' knowledge, attitudes, and beliefs about PEOLC. To better prepare students for their future professional roles, it is necessary for radiation therapy undergraduate programs to include PEOLC educational initiatives in its curricula. These initiatives should emphasize holistic care to prepare students to be competent radiation therapists who can address patients' complex PEOLC needs.