Understanding compassionate care from the patient perspective: Highlighting the experience of head and neck cancer care.

Objectives: To address the knowledge gap in the practice of compassionate healthcare by elucidating patient perspectives on compassion, empathy, and sympathy. Methods: Semi-structured telephone interviews were conducted at two time points with patients undergoing head and neck cancer treatment. Questions explored participants' understanding of compassion, sympathy, and empathy, as they relate to each other and to healthcare. Interviewers manually recorded responses. Qualitative exploratory methods were used to analyze data; inductive line-by-line coding was conducted to develop primary codes. Themes emerged through categorization of codes. Results: Ninety-five interviews conducted with 63 participants across two time points revealed four major themes - Compassion-vs-Empathy-vs-Sympathy, Coping Methods, Showing Care, and Nature of Interaction - encompassing seven categories, with a total of 24 codes. Codes were consistent across time points, except for two new codes, "positivity" and "personalized" emerging during follow-up interviews. Conclusions: Patient narrative from this study supported the concept that compassion is multidimensional and enabled several dimensions to be identified, highlighting the importance of patient perspectives in improving the provision of compassionate healthcare. Findings should be considered in future training and practice.

Using the Delphi Method to Elucidate Patient and Caregiver Experiences of Cancer Care.

Objective: Identify the most salient elements of the head and neck cancer (HNC) care experience described by patients and caregivers in focus group interviews. Methods: Three focus groups of patients and caregivers were facilitated by research assistants and clinicians. Open-ended guiding questions captured/elicited aspects of care that were appreciated, warranted improvement, or enhanced communication and information. A four-step Delphi process derived consensus among focus group facilitators (n = 5) regarding salient discussion points from focus group conversations. Results: Seven salient themes were identified: (1) information provision, (2) burden related to symptoms and treatment side effects, (3) importance of social support, (4) quality of care at both hospital and provider levels, (5) caring for the person, not just treating cancer, (6) social and emotional impact of HNC, and (7) stigma and insufficient information regarding human papillomavirus-related HNC. Conclusion: Participants reported varying needs and support preferences, a desire for individualized communication, and to feel cared for as both a person and a patient. Findings illuminate the intricate details underlying high-quality, compassionate, person-centered HNC cancer care.

Feasibility, Acceptability, and Clinical Significance of a Dyadic, Web-Based, Psychosocial and Physical Activity Self-Management Program (TEMPO) Tailored to the Needs of Men with Prostate Cancer and Their Caregivers: A Multi-Center Randomized Pilot Trial.

BACKGROUND: Prostate cancer is the most common cancer diagnosis among men. Family caregivers (often female spouses) play a key role in ensuring patients' needs are met, frequently assuming their role with no formal training, which can contribute to a high burden. The purpose of this study was to pilot TEMPO-the first dyadic, Tailored, wEb-based, psychosocial and physical activity self-Management PrOgram for men with prostate cancer and their caregivers. METHODS: 49 men with prostate cancer and their caregivers were randomized to TEMPO or usual care. Baseline and follow-up questionnaires were completed to assess feasibility, acceptability, and clinical significance. A priori benchmarks for these outcomes were set. Thirteen exit interviews were conducted to further explore acceptability. RESULTS: Feasibility benchmarks were met with the exception for recruitment with on average 6.1 dyads recruited/month (benchmark: 8 dyads/month). Benchmarks of acceptability focused on attrition (<25%) and system usability, which were met. Using the strict criteria for adherence of 100% of the module viewed and participants spending at least 15 min on the module, 45% of participants were adherent. The clinical significance on anxiety and quality of life was supported for caregivers, and mostly supported for the men with prostate cancer. CONCLUSION: This pilot trial was successful, with minor modifications needed prior to a large trial.

Dignity therapy for patients with brain tumours: qualitative reports from patients, caregivers and practitioners.

BACKGROUND: Most individuals with brain tumours experience distress or cognitive impairment during the illness trajectory, potentially causing decreased quality of life, strain on interpersonal relationships and altered sense of self or of the world. Symptoms of brain tumour and treatment can cause increased reliance on others and decreased in sense of dignity. Dignity is an important consideration when caring for patients, as it can influence decisions at end-of-life. Dignity therapy (DT) is a therapeutic intervention that was developed for patients near the end of life. DT encourages the patient to reflect on the life lived, including important roles and sources of pride, resulting in the development of a 'Legacy Document'. DT has been shown to enhance quality of life and dignity, and reduce psychological and existential distress for patients at the end-of-life. There is little literature on the effectiveness of DT, or other quality of life interventions, in brain tumour populations; This paper reports on the feasibility of conducting DT with this population, and presents qualitative data gathered from patients with brain tumours who participated in DT, their caregivers, and their Dignity Therapists. METHODS: Participants were recruited from the Odette Cancer Centre in Toronto. One of five Dignity Therapists conducted the intervention; time data was logged. Immediately after the intervention, patient participants, their caregivers, and Dignity Therapists were sent an open-ended, self-report survey about their experience with DT. Qualitative content analysis was conducted by an impartial reviewer. Average time taken to conduct the intervention was determined. RESULTS: Fifteen out of the 17 recruited participants (88%) completed the intervention; 2 were unable to complete the intervention due to progressing disease. Qualitative data was categorized according to two main areas of interest: Acceptability and Impact. Four participants, 5 caregivers and 4 care providers completed the qualitative surveys. All 4 patient participants reported benefits of DT that related to communication and/or advanced care planning (ACP). Dignity therapists felt that the impact on their patients was positive, and reported satisfaction as a clinician. CONCLUSIONS: The low attrition rate for the intervention suggests that DT is feasible in this population, though the required time to complete DT might be difficult for healthcare practitioners to provide within the recommended timeframe for this therapy. Positive qualitative reports on the effect of DT from patients, caregivers and dignity therapists alike indicate that DT is a promising intervention for this demographic.

Are we missing PTSD in our patients with cancer? Part I.

Posttraumatic Stress Disorder (PTSD) can be defined by the inability to recover from a traumatic event. A common misconception is that PTSD can only develop in circumstances of war or acute physical trauma. However, the diagnostic criteria of PTSD were adjusted in the Diagnostic Statistical Manual of Mental Disorders Fourth Edition (DSM-IV) to include the diagnosis and treatment of a life-threatening illness, such as cancer, as a traumatic stressor that can result in PTSD. The word 'cancer' is so strongly linked to fear, stigma, and mortality, that some patients are fearful to even say 'the C word'. Therefore, it is not surprising that patients may experience a diagnosis of cancer as sudden, catastrophic, and/or life-threatening. Cancer-related PTSD (CR-PTSD) can negatively affect a patient's psychosocial and physical well-being during treatment and into survivorship. Unfortunately, CR-PTSD often goes undiagnosed and, consequentially, untreated. This article provides a general overview of PTSD with cancer as the traumatic event in order to define CR-PTSD, and reviews the growing pool of literature on this topic, including prevalence, risk factors, characterization, and treatment of CR-PTSD. The purpose of this article is to spread awareness of this relatively newly defined and commonly missed disorder among patients with cancer to clinicians and patients alike.

Oncology nursing role in cancer-related PTSD-Part II.

Cancer-related posttraumatic stress disorder (CR-PTSD) is relatively newly defined, lacks clinician awareness and, therefore, often goes undiagnosed. Untreated CR-PTSD can be debilitating; negatively impacting all aspects of a patient's life throughout diagnosis, treatment, and into survivorship. Oncology nurses' frontline role, which includes caring for both patients' physical and psychosocial needs, and commonly forming a trusting relationship with patients, makes them ideal candidates for providing emotional support and assessing patients for risk or symptoms of CR-PTSD. In addition to a brief summary on the current nursing role in assessing and treating mental health disorders such as CR-PTSD, this article provides recommendations for how nurses can identify vulnerable patients, assess these patients for CR-PTSD and provide psychosocial support to those in need, as well as how hospitals can better equip oncology nurses to do so through training, education and supportive resources.