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Wang SM, Jiang JL, Li R, Wang JJ, Gu CH, Zeng J, Wei XH, Chen M. Qualitative exploration of home life experiences and care needs among elderly patients with temporary intestinal stomas. World J Gastroenterol 2024; 30:2893-2901. [PMID: 38947295 PMCID: PMC11212711 DOI: 10.3748/wjg.v30.i22.2893] [Citation(s) in RCA: 2] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/04/2024] [Revised: 04/25/2024] [Accepted: 05/17/2024] [Indexed: 06/05/2024] Open
Abstract
BACKGROUND This study employed a phenomenological research approach within qualitative research to explore the challenges encountered by elderly individuals with temporary colostomies in managing their daily lives and care needs. Protecting the anus surgery combined with temporary colostomy has emerged as a prevalent treatment modality for low rectal cancer. However, the ileostomy is susceptible to peri-stoma skin complications, as well as fluid, electrolyte, and nutritional imbalances, posing challenges to effective management. The successful self-management of patients is intricately linked to their adjustment to temporary colostomy; nonetheless, there remains a dearth of research examining the factors influencing self-care among temporary colostomy patients and the obstacles they confront. AIM To investigate the lived experiences, perceptions, and care requirements of temporary colostomy patients within their home environment, with the ultimate goal of formulating a standardized management protocol. METHODS Over the period of June to August 2023, a purposive sampling technique was utilized to select 12 patients with temporary intestinal stomas from a tertiary hospital in Shanghai, China. Employing a phenomenological research approach, a semi-structured interview guide was developed, and qualitative interviews were conducted using in-depth interview techniques. The acquired data underwent coding, analysis, organization, and summarization following Colaizzi's seven-step method. RESULTS The findings of this study revealed that the experiences and needs of patients with temporary intestinal stomas can be delineated into four principal themes: Firstly, Temporary colostomy patients bear various burdens and concerns about the uncertainty of disease progression; secondly, patients exhibit limited self-care capabilities and face information deficits, resulting in heightened reliance on healthcare professionals; thirdly, patients demonstrate the potential for internal motivation through proactive self-adjustment; and finally, patients express a significant need for emotional and social support. CONCLUSION Home-living patients with temporary intestinal stomas confront multifaceted challenges encompassing burdens, inadequate self-care abilities, informational deficits, and emotional needs. Identifying factors influencing patients' self-care at home and proposing strategies to mitigate barriers can serve as a foundational framework for developing and implementing nursing interventions tailored to the needs of patients with temporary intestinal stomas.
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Affiliation(s)
- Si-Meng Wang
- Wuxi Medical College of Jiangnan University, Jiangnan University, Wuxi 214122, Jiangsu Province, China
| | - Jian-Ling Jiang
- Department of Gastrointestinal Surgery, Tongren Hospital Shanghai Jiao Tong University School of Medicine, Shanghai 200335, China
| | - Rui Li
- Department of Nursing, Tong Ren Hospital Shanghai Jiao Tong University School of Medicine, Shanghai 200335, China
| | - Juan-Juan Wang
- Department of Gastrointestinal Surgery, Tongren Hospital Shanghai Jiao Tong University School of Medicine, Shanghai 200335, China
| | - Chun-Hong Gu
- Department of Gastrointestinal Surgery, Tongren Hospital Shanghai Jiao Tong University School of Medicine, Shanghai 200335, China
| | - Jia Zeng
- Wuxi Medical College of Jiangnan University, Jiangnan University, Wuxi 214122, Jiangsu Province, China
| | - Xiao-Hui Wei
- Wuxi Medical College of Jiangnan University, Jiangnan University, Wuxi 214122, Jiangsu Province, China
| | - Mei Chen
- Wuxi Medical College of Jiangnan University, Jiangnan University, Wuxi 214122, Jiangsu Province, China
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Uncertainty and the unmet informational needs of patients with cancer of unknown primary (CUP): a cross-sectional multi-site study. Support Care Cancer 2022; 30:8217-8229. [PMID: 35804177 PMCID: PMC9512714 DOI: 10.1007/s00520-022-07228-7] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/18/2022] [Accepted: 06/13/2022] [Indexed: 11/12/2022]
Abstract
OBJECTIVE This study aimed to determine the healthcare experiences, quality of life, and psychosocial needs of patients with cancer of unknown primary (CUP) early after diagnosis; comparing their experiences to patients with advanced cancer of a known primary (non-CUP control patients) and published general population reference data where available. METHODS This study was a cross-sectional, multi-site study comparing CUP patients (n = 139) compared to non-CUP controls (n = 45). Demographic, clinical information and patient-reported outcome questionnaire data were collected at baseline. RESULTS Differences in healthcare experienced were found between CUP and non-CUP controls with CUP patients reporting higher scores for unmet medical communication/information needs compared with non-CUP control patients (p = 0.013) as well as greater uncertainty in illness (p = 0.042). Whilst no differences were found between CUP and non-CUP controls on the EORTC and PROMIS measures, of those that 'received written information about your cancer…' and asked '…how useful was it?' fewer CUP patients reported finding the information useful 40% vs 61%, and more were likely to not have received written information at all 59% vs 32%; (p = 0.002). Additionally, of those that found information about their cancer online, fewer patients with CUP reported finding it useful 32% vs 48% control patients (p = 0.005). CONCLUSIONS CUP patients have unmet medical communication/information needs and greater uncertainty in illness but do not differ in health-related quality of life domains compared to patients with advanced cancer of a known primary.
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Jung A, Crandell JL, Nielsen ME, Smith SK, Bryant AL, Mayer DK. Relationships among uncertainty, post-traumatic stress disorder symptoms, and quality of life in non-muscle-invasive bladder cancer survivors. Support Care Cancer 2022; 30:6175-6185. [PMID: 35437672 DOI: 10.1007/s00520-022-07034-1] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/17/2021] [Accepted: 04/03/2022] [Indexed: 11/12/2022]
Abstract
PURPOSE The aim of this study was to examine relationships among uncertainty, PTSD symptoms (PTSS), and quality of life (QOL) in non-muscle-invasive bladder cancer (NMIBC) survivors. METHODS Eligible NMIBC survivors were identified through the North Carolina Central Cancer Registry, and 398 survivors participated in a mailed survey that measured survivor's outcomes (uncertainty, PTSS, and QOL). Structural equation modeling was used to examine the mediating effect of uncertainty and PTSS on the association between personal characteristics and QOL in NMIBC survivors. RESULTS NMIBC survivors experienced cancer-related uncertainty; higher uncertainty was associated with male, lower income, lack of cure, and lower cognition-ability. Uncertainty was significantly and negatively associated with QOL. In addition, PTSS completely mediated the effect of uncertainty on QOL, and higher PTSS had a strong association with poorer QOL. Additionally, comorbidities, cognition-general concerns, uncertainty, and PTSS had strong negative effects on QOL. CONCLUSION This study has identified modifiable psychosocial factors which affect QOL in NMIBC survivors. The study findings can be used in the development of interventions to improve QOL for NMIBC survivors.
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Affiliation(s)
- Ahrang Jung
- School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. .,School of Nursing, University of North Carolina at Greensboro, Greensboro, NC, USA.
| | - Jamie L Crandell
- School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
| | - Matthew E Nielsen
- School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.,UNC Lineberger Comprehensive Cancer Center, Chapel Hill, NC, USA
| | | | - Ashley Leak Bryant
- School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.,UNC Lineberger Comprehensive Cancer Center, Chapel Hill, NC, USA
| | - Deborah K Mayer
- School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
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Abstract
Objective: To systematically review the problem of appetite loss after major abdominal surgery. Summary of Background Data: Appetite loss is a common problem after major abdominal surgery. Understanding of etiology and treatment options is limited. Methods: We searched Medline, Cochrane Central Register of Controlled Trials, and Web of Science for studies describing postoperative appetite loss. Data were extracted to clarify definition, etiology, measurement, surgical influence, pharmacological, and nonpharmacological treatment. PROSPERO registration ID: CRD42021224489. Results: Out of 6144 articles, we included 165 studies, 121 of which were also analyzed quantitatively. A total of 19.8% were randomized, controlled trials (n = 24) and 80.2% were nonrandomized studies (n = 97). The studies included 20,506 patients undergoing the following surgeries: esophageal (n = 33 studies), gastric (n = 48), small bowel (n = 6), colon (n = 27), rectal (n = 20), hepatobiliary (n = 6), and pancreatic (n = 13). Appetite was mostly measured with the Quality of Life Questionnaire of the European Organization for Research and Treatment of Cancer (EORTC QLQ C30, n = 54). In a meta-analysis of 4 randomized controlled trials gum chewing reduced time to first hunger by 21.2 hours among patients who had bowel surgery. Other reported treatment options with positive effects on appetite but lower levels of evidence include, among others, intravenous ghrelin administration, the oral Japanese herbal medicine Rikkunshito, oral mosapride citrate, multidisciplin-ary-counseling, and watching cooking shows. No studies investigated the effect of well-known appetite stimulants such as cannabinoids, steroids, or megestrol acetate on surgical patients. Conclusions: Appetite loss after major abdominal surgery is common and associated with increased morbidity and reduced quality of life. Recent studies demonstrate the influence of reduced gastric volume and ghrelin secretion, and increased satiety hormone secretion. There are various treatment options available including level IA evidence for postoperative gum chewing. In the future, surgical trials should include the assessment of appetite loss as a relevant outcome measure.
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Heisey‐Grove D, Rathert C, McClelland LE, Jackson K, DeShazo J. Classification of patient- and clinician-generated secure messages using a theory-based taxonomy. Health Sci Rep 2021; 4:e295. [PMID: 34084944 PMCID: PMC8142627 DOI: 10.1002/hsr2.295] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/14/2020] [Revised: 04/10/2021] [Accepted: 04/20/2021] [Indexed: 12/21/2022] Open
Abstract
BACKGROUND As secure electronic message exchange increases between patients and clinicians, we must explore and understand how patients and clinicians use those messages to communicate between clinical visits. OBJECTIVE To present the application of a taxonomy developed specifically to code secure message content in a way that allows for identification of patient and clinician communication functions demonstrated to be associated with patients' intermediate and health outcomes. METHOD We randomly sampled 1031 patients who sent and received 18 309 messages and coded those messages with codes from our taxonomy. We present the prevalence of each taxon (ie, code) within the sample. RESULTS The most common taxon among initial patient-generated messages were Information seeking (29.09%), followed by Scheduling requests (27.91%), and Prescription requests (23.09%). Over half of subsequent patient-generated messages included responses to clinic staffs' questions (58.31%). Six in 10 clinic staff responses included some form of Information sharing with process-based responses being most common (32.81%). A third of all clinician-generated messages (36.28%) included acknowledgement or some level of fulfilment of a patient's task-oriented request. Clinic staff sought information from patients in 20.54% of their messages. CONCLUSION This taxonomy is the first step toward examining whether secure messaging communication can be associated with patients' health outcomes. Knowing which content is positively associated with outcomes can support training of, and targeted responses from, clinicians with the goal of generating message content designed to improve outcomes. PATIENT CONTRIBUTION This study is based on analyses of patient-initiated secure message threads.
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Affiliation(s)
- Dawn Heisey‐Grove
- Promoting Health and Disease Prevention Department, Public Health Division, The Health FFRDCThe MITRE CorporationMcLeanVirginia
| | - Cheryl Rathert
- Health Administration DepartmentCollege of Health Professions, Virginia Commonwealth UniversityRichmondVirginia
| | - Laura E McClelland
- Department of Health Management and PolicySaint Louis UniversitySt. LouisMissouri
| | - Kevin Jackson
- Allied Health DepartmentNorfolk State UniversityNorfolkVirginia
| | - Jonathan DeShazo
- Department of Health Management and PolicySaint Louis UniversitySt. LouisMissouri
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Marcus D, King A, Yazbek J, Hughes C, Ghaem-Maghami S. Anxiety and stress in women with suspected endometrial cancer: Survey and paired observational study. Psychooncology 2021; 30:1393-1400. [PMID: 33855785 DOI: 10.1002/pon.5697] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/06/2021] [Revised: 03/29/2021] [Accepted: 04/01/2021] [Indexed: 11/06/2022]
Abstract
OBJECTIVE To determine the anxiety and stress levels of women with suspected endometrial cancer and factors affecting this. METHODS Prospective survey and paired observational study of consecutive women with suspected endometrial cancer in a rapid access gynaecology clinic. Structured questionnaire including a GAD-7 anxiety test and a modified stress thermometer were used. Patients ranked their perception of a cancer diagnosis on 0-5 Likert scale (0 = confident not cancer and 5 = cancer). Patients requiring an endometrial tissue biopsy were asked to rank their pain on a visual analogue scale (VAS), this was paired with the survey results. RESULTS 250 patients completed the study and 23 of which underwent an endometrial tissue biopsy. The median age was 50-59 years old and 59% of women spoke English as their first language. 32% of patients had significant levels of anxiety with GAD-7 score ≥10. The median stress score was three out of five on Likert scale. GAD-7 anxiety scores were higher in women who perceived that they received insufficient information prior to clinic (sufficient information 5 vs. insufficient information 9.5, P = 0.00036) or had a disability (disability 9 vs. no disability 5.5, P = 0.00374). The median VAS score from the biopsies was seven out of 10 (range 1-10). Patients with higher anxiety levels (GAD-7 scores) were more likely to believe they had cancer P <0.00001. CONCLUSIONS These findings confirm high levels of anxiety and stress in women with suspected endometrial cancer. Adequate pre-clinic information is essential, particularly for minority groups.
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Affiliation(s)
- Diana Marcus
- Department of Surgery and Cancer, Imperial College London, London, UK.,Gynaecological Cancer Services, Queen Charlotte's and Chelsea Hospital, Imperial College Healthcare NHS Trust, London, UK
| | - Alex King
- Gynaecological Cancer Services, Queen Charlotte's and Chelsea Hospital, Imperial College Healthcare NHS Trust, London, UK
| | - Joseph Yazbek
- Gynaecological Cancer Services, Queen Charlotte's and Chelsea Hospital, Imperial College Healthcare NHS Trust, London, UK
| | - Cathy Hughes
- Gynaecological Cancer Services, Queen Charlotte's and Chelsea Hospital, Imperial College Healthcare NHS Trust, London, UK
| | - Sadaf Ghaem-Maghami
- Department of Surgery and Cancer, Imperial College London, London, UK.,Gynaecological Cancer Services, Queen Charlotte's and Chelsea Hospital, Imperial College Healthcare NHS Trust, London, UK
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Hartlief GA, Niemeijer AS, Lamberts KF, Nieuwenhuis MK. The impact of early information concerning the surgical operations on anxiety in patients with burns. Burns 2020; 47:847-853. [PMID: 32978010 DOI: 10.1016/j.burns.2020.08.013] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/23/2020] [Revised: 07/10/2020] [Accepted: 08/28/2020] [Indexed: 11/18/2022]
Abstract
AIMS Stress has been linked to poor coping with health-related issues, poor adaptation, a decrease of quality of life, poor recovery and poor wound healing. Therefore, it is important to address patients' uncertainty and feelings of anxiety. The aim of this study was to examine the effect of providing early treatment information based on an LDI-scan to patients with burns on their feelings of anxiety. DESIGN An observational prospective pre-test post-test study. METHODS Patients with intermediate burns (n = 59) admitted to our burn centre in 2016 were evaluated for anxiety using a visual analogue scale (VAS-A) before and after an LDI-scan was made. Two groups were compared: a group that heard whether surgery would or would not be recommended for wound closure (certain group) versus a group that heard to wait and see whether an operation was determined to be helpful (uncertain group). RESULTS Before the LDI-scan was made, both groups showed clinically high levels of anxiety (median VAS scores above 5). After the information gathered with the LDI was discussed with the patient, anxiety dropped significantly (median VAS below 3; p = .001). No significant differences between the groups were observed (p > .05). CONCLUSION In contrast to other studies, anxiety was significantly reduced in all our study groups after information was shared. Early communication of knowledge by health care professionals is important regardless whether it includes treatment uncertainty.
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Affiliation(s)
- Gera A Hartlief
- Martini Hospital, Burn Centre, P.O. Box 30.033, 9700 RM Groningen, The Netherlands.
| | - Anuschka S Niemeijer
- Martini Hospital, Burn Centre, P.O. Box 30.033, 9700 RM Groningen, The Netherlands; Association of Dutch Burn Centres, Martini Hospital, Burn Centre, P.O. Box 30.033, 9700 RM Groningen, The Netherlands; Martini Hospital, Scientific Institute, P.O. Box 30.033, 9700 RM Groningen, The Netherlands
| | - Kirsten F Lamberts
- Martini Hospital, Burn Centre, P.O. Box 30.033, 9700 RM Groningen, The Netherlands
| | - Marianne K Nieuwenhuis
- Martini Hospital, Burn Centre, P.O. Box 30.033, 9700 RM Groningen, The Netherlands; Association of Dutch Burn Centres, Martini Hospital, Burn Centre, P.O. Box 30.033, 9700 RM Groningen, The Netherlands
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Fernández-Martínez D, Rodríguez-Infante A, Otero-Díez JL, Baldonedo-Cernuda RF, Mosteiro-Díaz MP, García-Flórez LJ. Is my life going to change?-a review of quality of life after rectal resection. J Gastrointest Oncol 2020; 11:91-101. [PMID: 32175110 DOI: 10.21037/jgo.2019.10.03] [Citation(s) in RCA: 13] [Impact Index Per Article: 2.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/02/2023] Open
Abstract
Rectal resection is a common practice for colorectal surgeons. The causes of this procedure are varied. The most frequent is cancer, but also inflammatory bowel disease, endometriosis, and rectovaginal or rectourethral fistulas. The loss of the normal rectal reservoir function, urinary problems, sexual dysfunction or pelvic pain are frequently reported in patients after rectal surgery and these disorders markedly affect the overall quality of life (QoL). In the last decades, rectal surgery has radically changed, with the development of surgical techniques, and it has progressed from abdominoperineal resection (APR) with a permanent colostomy to sphincter-saving procedures. Nowadays, the use of sphincter-preserving surgery has increased, but all these surgical techniques can have important sequels that modify the QoL of the patients. Historically, surgical outcomes, such as complications, survival and recurrences, have been widely studied by surgeons. In the present day, surgical outcomes have improved, rectal cancer recurrence rate has decreased and survival has increased. For these reasons, it has begun to gain importance in aspects of the QoL of patients, such as body image, fecal continence and sexuality or urinary function. Therefore, physicians should know the influence of different techniques and approaches on functional outcomes and QoL, to be able to inform patients of the treatment benefits and risk of postoperative dysfunctions. The aim of our study is to review the current literature to determine to what degree the QoL of patients who underwent a rectal resection decreases, which domains are the most affected and, in addition, to establish the influence of different surgical techniques and approaches on functional outcomes.
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Affiliation(s)
- Daniel Fernández-Martínez
- Coloproctology Section, Department of General and Digestive Surgery, Hospital Universitario Central de Asturias (HUCA), Oviedo, Spain
| | | | - Jorge Luis Otero-Díez
- Coloproctology Section, Department of General and Digestive Surgery, Hospital Universitario Central de Asturias (HUCA), Oviedo, Spain
| | - Ricardo Felipe Baldonedo-Cernuda
- Coloproctology Section, Department of General and Digestive Surgery, Hospital Universitario Central de Asturias (HUCA), Oviedo, Spain
| | | | - Luis Joaquin García-Flórez
- Coloproctology Section, Department of General and Digestive Surgery, Hospital Universitario Central de Asturias (HUCA), Oviedo, Spain
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Change of Uncertainty in Illness and Unmet Care Needs in Patients With Recurrent Hepatocellular Carcinoma During Active Treatment. Cancer Nurs 2019; 41:279-289. [PMID: 28410334 DOI: 10.1097/ncc.0000000000000487] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/22/2022]
Abstract
BACKGROUND Uncertainty about or related to cancer-related treatment and prognosis is commonly experienced by patients with hepatocellular carcinoma and might be associated with unmet care needs. However, their dynamic associations have not been examined in this population. OBJECTIVE The aim of this study was to explore change in unmet care needs and uncertainty under different levels of uncertainty (low vs high) before discharge and the significant factors related to change of uncertainty in patients with recurrent hepatocellular carcinoma after treatment. METHODS A set of questionnaires was used to collect data including symptom distress, supportive care needs, and uncertainty of illness before discharge (T0), 1 month after discharge (T1), and 2 months after discharge (T2). The significant factors related to uncertainty were identified by generalized estimating equations. RESULTS The patients with high uncertainty, who were younger in age, had significantly higher levels of symptom distress and unmet care needs. Before discharge, the patients' highest levels of unmet needs were psychological in the high-uncertainty group. Patients with jobs, higher unmet care needs, and high uncertainty before discharge had higher levels of uncertainty over time. CONCLUSIONS The changes in uncertainty were significantly associated with unmet care needs over time, and the baseline level of uncertainty was a significant factor related to the change of uncertainty. IMPLICATIONS FOR PRACTICE Healthcare providers should take into account each individual's age, levels of psychological need, and symptom distress and should offer personalized information related to psychological needs and symptom management to decrease levels of uncertainty before discharge.
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Liu B, Sundar SS. Should Machines Express Sympathy and Empathy? Experiments with a Health Advice Chatbot. CYBERPSYCHOLOGY BEHAVIOR AND SOCIAL NETWORKING 2018; 21:625-636. [PMID: 30334655 DOI: 10.1089/cyber.2018.0110] [Citation(s) in RCA: 71] [Impact Index Per Article: 10.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 01/20/2023]
Abstract
When we ask a chatbot for advice about a personal problem, should it simply provide informational support and refrain from offering emotional support? Or, should it show sympathy and empathize with our situation? Although expression of caring and understanding is valued in supportive human communications, do we want the same from a chatbot, or do we simply reject it due to its artificiality and uncanniness? To answer this question, we conducted two experiments with a chatbot providing online medical information advice about a sensitive personal issue. In Study 1, participants (N = 158) simply read a dialogue between a chatbot and a human user. In Study 2, participants (N = 88) interacted with a real chatbot. We tested the effect of three types of empathic expression-sympathy, cognitive empathy, and affective empathy-on individuals' perceptions of the service and the chatbot. Data reveal that expression of sympathy and empathy is favored over unemotional provision of advice, in support of the Computers are Social Actors (CASA) paradigm. This is particularly true for users who are initially skeptical about machines possessing social cognitive capabilities. Theoretical, methodological, and practical implications are discussed.
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Affiliation(s)
- Bingjie Liu
- Media Effects Research Laboratory, Donald P. Bellisario College of Communications, Penn State University, University Park , Pennsylvania
| | - S Shyam Sundar
- Media Effects Research Laboratory, Donald P. Bellisario College of Communications, Penn State University, University Park , Pennsylvania
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van der Heijden JAG, Thomas G, Caers F, van Dijk WA, Slooter GD, Maaskant-Braat AJG. What you should know about the low anterior resection syndrome - Clinical recommendations from a patient perspective. Eur J Surg Oncol 2018; 44:1331-1337. [PMID: 29807727 DOI: 10.1016/j.ejso.2018.05.010] [Citation(s) in RCA: 17] [Impact Index Per Article: 2.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/06/2018] [Accepted: 05/09/2018] [Indexed: 02/05/2023] Open
Abstract
INTRODUCTION Functional bowel complaints, referred to as Low Anterior Resection Syndrome (LARS), are common after sphincter-saving surgical procedures and have a severe impact on quality of life (QoL). Care for LARS patients is complex and surgeons underestimate or misinterpret its associated symptoms. This study aimed to explore the impact of LARS from a patient perspective facilitating the construction of a set of recommendations improving current care stratagems. METHODS In a non-academic Dutch teaching hospital, three focus group sessions were conducted with 16 patients (males = 50%) who had undergone colorectal surgery between 2012 and 2017. A trained moderator orchestrated patient-discussion regarding illness perception and health-care needs. Transcripts were analysed using inductive content analysis. RESULTS Three themes were identified: illness perception, preoperative care and postoperative supportive care. Specific attention and screening for LARS is deemed necessary for breaking the taboo surrounding it. Extension of preoperative counselling on the normal postoperative course, including ways to optimize social support, were identified as crucial. After discharge, patients experienced a lack of supportive care regarding functional complaints and did not know who to counsel. In addition, they felt intrinsically motivated to actively prepare for surgery, i.e. by participating in prehabilitation programs. CONCLUSION Exploring perspectives in LARS patients resulted in the identification of potential improvements in current care pathways. Recommendations on ways to improve information provision, screening of LARS and methods to intervene in the gap of supportive care after discharge are presented. We recommend to implement these measures as QoL of patients undergoing colorectal cancer surgery may be improved.
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Affiliation(s)
| | - G Thomas
- Department of Surgical Oncology, Máxima Medical Center, Veldhoven, The Netherlands.
| | - F Caers
- Department of Surgical Oncology, Máxima Medical Center, Veldhoven, The Netherlands.
| | - W A van Dijk
- Department of Surgical Oncology, Máxima Medical Center, Veldhoven, The Netherlands.
| | - G D Slooter
- Department of Surgical Oncology, Máxima Medical Center, Veldhoven, The Netherlands.
| | - A J G Maaskant-Braat
- Department of Surgical Oncology, Máxima Medical Center, Veldhoven, The Netherlands.
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Reinwalds M, Blixter A, Carlsson E. Living with a resected rectum after rectal cancer surgery—Struggling not to let bowel function control life. J Clin Nurs 2017; 27:e623-e634. [DOI: 10.1111/jocn.14112] [Citation(s) in RCA: 19] [Impact Index Per Article: 2.4] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 10/12/2017] [Indexed: 01/16/2023]
Affiliation(s)
- Maria Reinwalds
- Department of Surgery Institute of Clinical Sciences Sahlgrenska University Hospital/Östra Gothenburg Sweden
| | - Andrea Blixter
- Department of Surgery Angered Hospital Gothenburg Sweden
- Department of Surgery Kungälv Hospital Kungälv Sweden
| | - Eva Carlsson
- Department of Surgery Institute of Clinical Sciences Sahlgrenska University Hospital/Östra Gothenburg Sweden
- Institute of Health and Care Sciences Sahlgrenska Academy University of Gothenburg Gothenburg Sweden
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Kotronoulas G, Papadopoulou C, Burns-Cunningham K, Simpson M, Maguire R. A systematic review of the supportive care needs of people living with and beyond cancer of the colon and/or rectum. Eur J Oncol Nurs 2017; 29:60-70. [DOI: 10.1016/j.ejon.2017.05.004] [Citation(s) in RCA: 66] [Impact Index Per Article: 8.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/07/2017] [Revised: 05/03/2017] [Accepted: 05/20/2017] [Indexed: 12/23/2022]
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Ghodraty Jabloo V, Alibhai SMH, Fitch M, Tourangeau AE, Ayala AP, Puts MTE. Antecedents and Outcomes of Uncertainty in Older Adults With Cancer: A Scoping Review of the Literature. Oncol Nurs Forum 2017; 44:E152-E167. [PMID: 28632247 DOI: 10.1188/17.onf.e152-e167] [Citation(s) in RCA: 23] [Impact Index Per Article: 2.9] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
PROBLEM IDENTIFICATION Uncertainty is a major source of distress for cancer survivors. Because cancer is primarily a disease of older adults, a comprehensive understanding of the antecedents and outcomes of uncertainty in older adults with cancer is essential.
. LITERATURE SEARCH MEDLINE®, PsycINFO®, Scopus, and CINAHL® were searched from inception to December 2015. Medical Subject Headings (MeSH) terms and free text words were used for the search concepts, including neoplasms, uncertainty, and aging.
. DATA EVALUATION Extracted data included research aims; research design or analysis approach; sample size; mean age; type, stage, and duration of cancer; type and duration of treatment; uncertainty scale; and major results.
. SYNTHESIS Of 2,584 articles initially identified, 44 studies (30 qualitative, 12 quantitative, and 2 mixed-methods) were included. Evidence tables were developed to organize quantitative and qualitative data. Descriptive numeric and thematic analyses were used to analyze quantitative results and qualitative findings, respectively. Outcomes were reported under four main categories. CONCLUSIONS Uncertainty is an enduring and common experience in cancer survivorship. Uncertainty is affected by a number of demographic and clinical factors and affects quality of life (QOL) and psychological well-being.
. IMPLICATIONS FOR PRACTICE Uncertainty should be considered a contributing factor to psychological well-being and QOL in older adults with cancer. Nurses are in a unique position to assess negative effects of uncertainty and manage these consequences by providing patients with information and emotional support.
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Abstract
OBJECTIVES To describe psychosocial concerns associated with the postoperative cancer patient and to discuss current psychosocial evidence-based approaches to manage these psychosocial concerns. DATA SOURCES Published peer-reviewed literature. CONCLUSION The postoperative phase of cancer care may be associated with a range of overlapping acute and chronic psychosocial concerns related to the surgery itself, the cancer diagnosis, and the need for ongoing cancer treatments. The postoperative period of cancer care represents an essential time to detect unmet psychosocial concerns and begin timely interventions for these concerns. IMPLICATIONS FOR NURSING PRACTICE Nurses are in a key position to detect, triage, refer, or manage psychosocial concerns in the postoperative patient with cancer. Current psychosocial evidence-based approaches may be used by surgical oncology nurses or other nurses who care for cancer patients during postoperative recovery.
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16
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Uncertainty and Adaptation Among Adults Living With Incontinent Ostomies. J Wound Ostomy Continence Nurs 2015; 42:361-7. [DOI: 10.1097/won.0000000000000132] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/25/2022]
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Hird AE, Lemke M, Turovsky M, Malecki V, Kumar K, DeAngelis C, Chow E, Ko YJ. Doctor, what are my options? A prospective cohort study of an individualized care plan for patients with gastrointestinal cancer. ACTA ACUST UNITED AC 2015; 22:e171-7. [PMID: 26089728 DOI: 10.3747/co.22.2194] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/15/2022]
Abstract
BACKGROUND For cancer patients, information about their disease and its treatment is often delivered within a short time period, potentially leading to patient misunderstanding, which can impede optimal patient care. In this 3-part clinical study, we investigated the utility of an individualized care plan for patients with gastrointestinal (gi) cancer starting a new treatment. METHODS In part 1, a comprehensive literature search identified items for potential inclusion in the care plan. Those items were formatted into a questionnaire. The questionnaire was then administered to patients as a structured interview. In part 2, health care professionals involved in the care of patients with gi cancer evaluated the resulting care plan for content and relevancy. In part 3, a 20-week prospective cohort study (10 weeks using standard of care, 10 weeks using individualized care plans) was conducted. Outcomes were assessed at baseline and at 2-4 weeks after administration of the care plan. RESULTS In part 1, a 73-item questionnaire was developed and completed by 20 patients in semi-structured interviews. In part 2, long and short versions of the care plan were created. Most health care professionals preferred the long version. Based on their comments, a final version of the care plan was created. The part 3 study enrolled 104 patients. Overall satisfaction scores were significantly higher in the intervention group at baseline (p = 0.010) and follow-up (p = 0.005). Compared with control patients, the intervention cohort also reported significantly higher overall quality of life (p = 0.044) and fewer symptoms of anxiety (p = 0.048) at follow-up. CONCLUSIONS Provision of an individualized care plan resulted in improvements in outcome measures at both baseline and follow-up. Future studies are needed to confirm these findings.
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Affiliation(s)
- A E Hird
- Division of Medical Oncology and Hematology, Sunnybrook Health Sciences Centre, Odette Cancer Centre, Toronto, ON
| | - M Lemke
- Division of Medical Oncology and Hematology, Sunnybrook Health Sciences Centre, Odette Cancer Centre, Toronto, ON
| | - M Turovsky
- Division of Medical Oncology and Hematology, Sunnybrook Health Sciences Centre, Odette Cancer Centre, Toronto, ON
| | - V Malecki
- Division of Medical Oncology and Hematology, Sunnybrook Health Sciences Centre, Odette Cancer Centre, Toronto, ON
| | - K Kumar
- Division of Medical Oncology and Hematology, Sunnybrook Health Sciences Centre, Odette Cancer Centre, Toronto, ON
| | - C DeAngelis
- Department of Pharmacy, Sunnybrook Health Sciences Centre, Odette Cancer Centre, Toronto, ON
| | - E Chow
- Department of Radiation Oncology, Sunnybrook Health Sciences Centre, Odette Cancer Centre, Toronto, ON
| | - Y J Ko
- Division of Medical Oncology and Hematology, Sunnybrook Health Sciences Centre, Odette Cancer Centre, Toronto, ON
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18
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Hagen KB, Aas T, Lode K, Gjerde J, Lien E, Kvaløy JT, Lash TL, Søiland H, Lind R. Illness uncertainty in breast cancer patients: Validation of the 5-item short form of the Mishel Uncertainty in Illness Scale. Eur J Oncol Nurs 2015; 19:113-9. [DOI: 10.1016/j.ejon.2014.10.009] [Citation(s) in RCA: 30] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/28/2014] [Revised: 10/11/2014] [Accepted: 10/24/2014] [Indexed: 10/24/2022]
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Papadakos J, Urowitz S, Olmstead C, Jusko Friedman A, Zhu J, Catton P. Informational needs of gastrointestinal oncology patients. Health Expect 2014; 18:3088-98. [PMID: 25382413 DOI: 10.1111/hex.12296] [Citation(s) in RCA: 18] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 10/03/2014] [Indexed: 11/30/2022] Open
Abstract
OBJECTIVES In response to the dearth of consumer health information for patients with gastrointestinal cancers, this study examined the informational needs of these patients to build a plan for future resource development. Although studies have examined informational needs of some such cancers, no published literature has investigated the comprehensive informational needs across all sites of gastrointestinal cancer. METHODS A cross-sectional needs assessment comprising a self-administered questionnaire was conducted at an ambulatory gastrointestinal oncology clinic in Toronto, Canada. Patient informational needs were measured, including importance of information, amount desired and preferred mode of delivery. Informational needs were grouped into six domains: medical, practical, physical, emotional, social and spiritual. RESULTS Eighty-two surveys were analysed. The majority of the respondents were male (53.8%), over the age of 50 (77.8%), and born outside of Canada (51.9%). While many did not speak English as a child (46.3%), and do not speak English at home (22.2%), nearly all indicated comfort with receiving health information in English (97.5%). The majority of respondents were college educated (79.3%) and married (73%). Multiple cancer types were reported; the most common being colorectal (39%), followed by pancreatic (12%) and cancers of the gallbladder or bile duct (12%). Overall, respondents placed highest importance on medical information (P < 0.001). Preferred education modalities were pamphlets, websites and one-on-one discussions with health-care professionals. CONCLUSIONS This study highlights the principal informational needs of patients with gastrointestinal malignancies, along with preferred modality for information delivery. This information will guide the development of educational resources for future patients.
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Affiliation(s)
- Janet Papadakos
- Patient & Education Program, Princess Margaret Cancer Centre, University Health Network, Toronto, ON, Canada.,Institute of Health Policy, Management & Evaluation, University of Toronto, Toronto, ON, Canada
| | - Sara Urowitz
- Palliative Care, Clinical Programs Quality Initiatives, Cancer Care Ontario, Toronto, ON, Canada
| | - Craig Olmstead
- Patient & Education Program, Princess Margaret Cancer Centre, University Health Network, Toronto, ON, Canada.,Schulich School of Medicine and Dentistry, University of Western Ontario, London, ON, Canada
| | - Audrey Jusko Friedman
- Patient & Education Program, Princess Margaret Cancer Centre, University Health Network, Toronto, ON, Canada.,Department of Radiation Medicine, Faculty of Medicine, University of Toronto, Toronto, ON, Canada
| | - Jason Zhu
- Patient & Education Program, Princess Margaret Cancer Centre, University Health Network, Toronto, ON, Canada.,Faculty of Medicine, Undergraduate Medical Education Program, University of Toronto, Toronto, ON, Canada
| | - Pamela Catton
- Patient & Education Program, Princess Margaret Cancer Centre, University Health Network, Toronto, ON, Canada.,Cancer Education, Princess Margaret Cancer Centre, Toronto, ON, Canada.,Cancer Survivorship Program, Princess Margaret Cancer Centre, Toronto, ON, Canada
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20
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Karlsson M, Friberg F, Wallengren C, Öhlén J. Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: a life-world phenomenological study. BMC Palliat Care 2014; 13:28. [PMID: 24936149 PMCID: PMC4059734 DOI: 10.1186/1472-684x-13-28] [Citation(s) in RCA: 49] [Impact Index Per Article: 4.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/03/2013] [Accepted: 05/15/2014] [Indexed: 01/27/2023] Open
Abstract
BACKGROUND Many people around the world are getting cancer and living longer with the disease. Thanks to improved treatment options in healthcare, patients diagnosed with advanced gastrointestinal cancer can increasingly live for longer. Living with cancer creates existential uncertainty, but what does this situation mean for the individual? The purpose of the study is to interpret meanings of existential uncertainty and certainty for people diagnosed with advanced gastrointestinal cancer and receiving palliative treatment. METHODS This study is part of a larger project in which 7 men and 7 women aged between 49 and 79 participated in a study of information and communication for people with advanced gastrointestinal cancer. A total of 66 interviews were conducted with participants who were followed up over time. The narrative interviews were transcribed verbatim and the texts were analysed in three steps: naive reading, structural analysis and interpreted whole by utilizing a phenomenological life-world approach. RESULTS THIS STUDY HAS IDENTIFIED DIFFERENT SPHERES IN WHICH PEOPLE DIAGNOSED WITH ADVANCED GASTROINTESTINAL CANCER VACILLATE BETWEEN EXISTENTIAL UNCERTAINTY AND CERTAINTY: bodily changes, everyday situations, companionship with others, healthcare situations and the natural environment. Existing in the move between existential uncertainty and certainty appears to change people's lives in a decisive manner. The interview transcripts reveal aspects that both create existential certainty and counteract uncertainty. They also reveal that participants appear to start reflecting on how the new and uncertain aspects of their lives will manifest themselves -a new experience that lays the foundation for development of knowledge, personal learning and growth. CONCLUSIONS People diagnosed with advanced gastrointestinal cancer and receiving palliative care expressed thoughts about personal learning initiated by the struggle of living with an uncertain future despite their efforts to live in the present. Their personal learning was experienced through a changed life for themselves and having to confront their own pending death and develop self-insight regarding finality of life. Healthcare professionals can try to support people receiving palliative treatment for cancer by diversifying avenues for their personal growth, thus helping them manage their existential uncertainty and gravitate towards greater existential certainty.
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Affiliation(s)
- Magdalena Karlsson
- Institute of Health and Care Sciences, Sahlgrenska Academy at the University of Gothenburg, Sweden, Box 457, Gothenburg SE- 405 30, Sweden
- Sahlgrenska University Hospital, Per Dubbsgatan, Gothenburg SE- 413 45, Sweden
| | - Febe Friberg
- University of Gothenburg Centre for Person-Centred Care, Box 457, Gothenburg SE- 405 30, Sweden
- Department of Health Studies, Faculty of Social Sciences, University of Stavanger, Stavanger 4036, Norway
| | - Catarina Wallengren
- Institute of Health and Care Sciences, Sahlgrenska Academy at the University of Gothenburg, Sweden, Box 457, Gothenburg SE- 405 30, Sweden
- University of Gothenburg Centre for Person-Centred Care, Box 457, Gothenburg SE- 405 30, Sweden
| | - Joakim Öhlén
- Institute of Health and Care Sciences, Sahlgrenska Academy at the University of Gothenburg, Sweden, Box 457, Gothenburg SE- 405 30, Sweden
- University of Gothenburg Centre for Person-Centred Care, Box 457, Gothenburg SE- 405 30, Sweden
- Palliative Research Centre, Ersta Sköndal University College and Ersta Hospital, Stockholm, Sweden
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21
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Cahill JE, Lin L, LoBiondo-Wood G, Armstrong TS, Acquaye AA, Vera-Bolanos E, Gilbert MR, Padhye NS. Personal health records, symptoms, uncertainty, and mood in brain tumor patients. Neurooncol Pract 2014; 1:64-70. [PMID: 26034618 DOI: 10.1093/nop/npu005] [Citation(s) in RCA: 9] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/15/2013] [Indexed: 11/13/2022] Open
Abstract
BACKGROUND The advantages of patient access to the electronic medical record (EMR) through integrated personal health records (PHR) may be substantial, and foremost is the enhanced information flow between patient and practitioner. Because this is an emerging technology, the actualized benefits to complex patient groups remain largely unknown. MD Anderson Cancer Center provides web-based PHR portal access to the EMR including clinic notes, MRI results, and pathology reports. This study sought to evaluate PHR use by glioma patients. METHODS Cross-sectional survey and PHR-derived user data from 186 patients were analyzed using descriptive and inferential statistics. Logistic regression assessed disparities between users and nonusers. Dependence of PHR access on treatment stage was tested through linear regression. Path analysis evaluated PHR access, disease-related uncertainty, symptom experience, and mood. RESULTS Patients averaged 44.2 years (range 19y-80y), 77% had a high-grade tumor, and 60% had accessed PHR at least one time (range 0-126). Strongest predictors of access included education level (college level or higher), low performance status, middle income, and in-state residency. Patients undergoing treatment were more active users. PHR access was associated with lower disease-related uncertainty and lower symptom severity. Mood was not directly related to PHR use but mediated an association between symptom severity and uncertainty. CONCLUSIONS While many reports presume better disease and symptom understanding for patients with EMR access, this study is the first to correlate PHR use to lower patient uncertainty levels. Early examination of PHR provides an important basis for critical evaluation and optimization to better structure this benefit for brain tumor patients.
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Affiliation(s)
- Jennifer E Cahill
- Department of Family Health , The University of Texas Health Science Center at Houston, School of Nursing , Houston, Texas (J.E.C., L.L., T.S.A.); Department of Neuro-Oncology , The University of Texas MD Anderson Cancer Center, Houston, Texas (T.S.A., A.A.A., E.V.B., M.R.G.); Department of Nursing Systems , The University of Texas Health Science Center at Houston, School of Nursing, Houston, Texas (G.L.W., N.S.P.)
| | - Lin Lin
- Department of Family Health , The University of Texas Health Science Center at Houston, School of Nursing , Houston, Texas (J.E.C., L.L., T.S.A.); Department of Neuro-Oncology , The University of Texas MD Anderson Cancer Center, Houston, Texas (T.S.A., A.A.A., E.V.B., M.R.G.); Department of Nursing Systems , The University of Texas Health Science Center at Houston, School of Nursing, Houston, Texas (G.L.W., N.S.P.)
| | - Geri LoBiondo-Wood
- Department of Family Health , The University of Texas Health Science Center at Houston, School of Nursing , Houston, Texas (J.E.C., L.L., T.S.A.); Department of Neuro-Oncology , The University of Texas MD Anderson Cancer Center, Houston, Texas (T.S.A., A.A.A., E.V.B., M.R.G.); Department of Nursing Systems , The University of Texas Health Science Center at Houston, School of Nursing, Houston, Texas (G.L.W., N.S.P.)
| | - Terri S Armstrong
- Department of Family Health , The University of Texas Health Science Center at Houston, School of Nursing , Houston, Texas (J.E.C., L.L., T.S.A.); Department of Neuro-Oncology , The University of Texas MD Anderson Cancer Center, Houston, Texas (T.S.A., A.A.A., E.V.B., M.R.G.); Department of Nursing Systems , The University of Texas Health Science Center at Houston, School of Nursing, Houston, Texas (G.L.W., N.S.P.)
| | - Alvina A Acquaye
- Department of Family Health , The University of Texas Health Science Center at Houston, School of Nursing , Houston, Texas (J.E.C., L.L., T.S.A.); Department of Neuro-Oncology , The University of Texas MD Anderson Cancer Center, Houston, Texas (T.S.A., A.A.A., E.V.B., M.R.G.); Department of Nursing Systems , The University of Texas Health Science Center at Houston, School of Nursing, Houston, Texas (G.L.W., N.S.P.)
| | - Elizabeth Vera-Bolanos
- Department of Family Health , The University of Texas Health Science Center at Houston, School of Nursing , Houston, Texas (J.E.C., L.L., T.S.A.); Department of Neuro-Oncology , The University of Texas MD Anderson Cancer Center, Houston, Texas (T.S.A., A.A.A., E.V.B., M.R.G.); Department of Nursing Systems , The University of Texas Health Science Center at Houston, School of Nursing, Houston, Texas (G.L.W., N.S.P.)
| | - Mark R Gilbert
- Department of Family Health , The University of Texas Health Science Center at Houston, School of Nursing , Houston, Texas (J.E.C., L.L., T.S.A.); Department of Neuro-Oncology , The University of Texas MD Anderson Cancer Center, Houston, Texas (T.S.A., A.A.A., E.V.B., M.R.G.); Department of Nursing Systems , The University of Texas Health Science Center at Houston, School of Nursing, Houston, Texas (G.L.W., N.S.P.)
| | - Nikhil S Padhye
- Department of Family Health , The University of Texas Health Science Center at Houston, School of Nursing , Houston, Texas (J.E.C., L.L., T.S.A.); Department of Neuro-Oncology , The University of Texas MD Anderson Cancer Center, Houston, Texas (T.S.A., A.A.A., E.V.B., M.R.G.); Department of Nursing Systems , The University of Texas Health Science Center at Houston, School of Nursing, Houston, Texas (G.L.W., N.S.P.)
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Hinami K, Bilimoria KY, Kallas PG, Simons YM, Christensen NP, Williams MV. Patient experiences after hospitalizations for elective surgery. Am J Surg 2013; 207:855-62. [PMID: 24139552 DOI: 10.1016/j.amjsurg.2013.04.014] [Citation(s) in RCA: 25] [Impact Index Per Article: 2.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/07/2013] [Revised: 04/19/2013] [Accepted: 04/29/2013] [Indexed: 11/30/2022]
Abstract
BACKGROUND Little is known from patients' perspective about the quality of postdischarge care and the causes of rehospitalization after elective surgery. METHODS A prospective observational cohort study was conducted. RESULTS Of 400 patient participants, 374 completed the 30-day follow-up questionnaire (completion rate, 94%). Half of all unplanned rehospitalizations (experienced by 13% of patients) and nonrehospitalization emergency department visits (experienced by 6%) occurred within 10 days of discharge. Patients used emergency departments and were rehospitalized at facilities near their homes (mean distance traveled, 12.1 mi). The most common primary reason for rehospitalization was postoperative complications, according to patient report, clinical records, and administrative data. Poor perceived care coordination was associated with higher readmission risk. CONCLUSIONS Patients perceive surgical complications as dominating the reasons for rehospitalizations after elective surgery. Strategies to improve care quality around elective surgery at referral centers should target the discharge process and the coordinated management of postoperative complications through care received at regional hospitals.
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Affiliation(s)
- Keiki Hinami
- Division of Hospital Medicine, Northwestern University Feinberg School of Medicine, 211 E. Ontario Street, 7-727, Chicago, IL 60611, USA.
| | - Karl Y Bilimoria
- Surgical Outcomes and Quality Improvement Center, Department of Surgery, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
| | - Peter G Kallas
- Division of Hospital Medicine, Northwestern University Feinberg School of Medicine, 211 E. Ontario Street, 7-727, Chicago, IL 60611, USA
| | - Yael M Simons
- Division of Hospital Medicine, Northwestern University Feinberg School of Medicine, 211 E. Ontario Street, 7-727, Chicago, IL 60611, USA
| | - Nicholas P Christensen
- Division of Hospital Medicine, Northwestern University Feinberg School of Medicine, 211 E. Ontario Street, 7-727, Chicago, IL 60611, USA
| | - Mark V Williams
- Division of Hospital Medicine, Northwestern University Feinberg School of Medicine, 211 E. Ontario Street, 7-727, Chicago, IL 60611, USA
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Xie B, Wang M, Feldman R, Zhou L. Internet use frequency and patient-centered care: measuring patient preferences for participation using the health information wants questionnaire. J Med Internet Res 2013; 15:e132. [PMID: 23816979 PMCID: PMC3714005 DOI: 10.2196/jmir.2615] [Citation(s) in RCA: 53] [Impact Index Per Article: 4.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/14/2013] [Revised: 04/30/2013] [Accepted: 06/13/2013] [Indexed: 12/23/2022] Open
Abstract
Background The Internet is bringing fundamental changes to medical practice through improved access to health information and participation in decision making. However, patient preferences for participation in health care vary greatly. Promoting patient-centered health care requires an understanding of the relationship between Internet use and a broader range of preferences for participation than previously measured. Objective To explore (1) whether there is a significant relationship between Internet use frequency and patients’ overall preferences for obtaining health information and decision-making autonomy, and (2) whether the relationships between Internet use frequency and information and decision-making preferences differ with respect to different aspects of health conditions. Methods The Health Information Wants Questionnaire (HIWQ) was administered to gather data about patients’ preferences for the (1) amount of information desired about different aspects of a health condition, and (2) level of decision-making autonomy desired across those same aspects. Results The study sample included 438 individuals: 226 undergraduates (mean age 20; SD 2.15) and 212 community-dwelling older adults (mean age 72; SD 9.00). A significant difference was found between the younger and older age groups’ Internet use frequencies, with the younger age group having significantly more frequent Internet use than the older age group (younger age group mean 5.98, SD 0.33; older age group mean 3.50, SD 2.00; t436=17.42, P<.01). Internet use frequency was positively related to the overall preference rating (γ=.15, P<.05), suggesting that frequent Internet users preferred significantly more information and decision making than infrequent Internet users. The relationships between Internet use frequency and different types of preferences varied: compared with infrequent Internet users, frequent Internet users preferred more information but less decision making for diagnosis (γ=.57, P<.01); more information and more decision-making autonomy for laboratory test (γ=.15, P<.05), complementary and alternative medicine (γ=.32, P<.01), and self-care (γ=.15, P<.05); and less information but more decision-making autonomy for the psychosocial (γ=-.51, P<.01) and health care provider (γ=-.27, P<.05) aspects. No significant difference was found between frequent and infrequent Internet users in their preferences for treatment information and decision making. Conclusions Internet use frequency has a positive relationship with the overall preferences for obtaining health information and decision-making autonomy, but its relationship with different types of preferences varies. These findings have important implications for medical practice.
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Affiliation(s)
- Bo Xie
- School of Nursing & School of Information, University of Texas at Austin, Austin, TX, United States.
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Uesugi Y, Hayashi S, Fujishiro T, Kanzaki N, Nishiyama T. Effectiveness of distance education intervention using video footage in postoperative patients after total hip arthroplasty. Int J Orthop Trauma Nurs 2013. [DOI: 10.1016/j.ijotn.2013.01.002] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/28/2022]
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Danielsen AK, Soerensen EE, Burcharth K, Rosenberg J. Impact of a temporary stoma on patients' everyday lives: feelings of uncertainty while waiting for closure of the stoma. J Clin Nurs 2013; 22:1343-52. [PMID: 23279240 DOI: 10.1111/jocn.12011] [Citation(s) in RCA: 39] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 07/29/2012] [Indexed: 11/28/2022]
Affiliation(s)
- Anne K Danielsen
- Department of Surgery; Herlev Hospital; University of Copenhagen; Herlev Denmark
| | - Erik E Soerensen
- Aalborg Hospital Science and Innovation Center; Aalborg University Hospital; Aalborg Denmark
| | - Kirsten Burcharth
- Department of Surgery; Herlev Hospital; University of Copenhagen; Herlev Denmark
| | - Jacob Rosenberg
- Department of Surgery; Herlev Hospital; University of Copenhagen; Herlev Denmark
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Ançel G. Information needs of cancer patients: a comparison of nurses' and patients' perceptions. JOURNAL OF CANCER EDUCATION : THE OFFICIAL JOURNAL OF THE AMERICAN ASSOCIATION FOR CANCER EDUCATION 2012; 27:631-640. [PMID: 23007855 DOI: 10.1007/s13187-012-0416-2] [Citation(s) in RCA: 12] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 06/01/2023]
Abstract
This study aimed to identify nurses' and patients' perceptions and compare them in terms of the information needs of cancer patients. Another aim is to identify the association between the demographic and situational characteristics of patients'/nurses' and information needs. A total of 305 patients and 130 nurses participated in this descriptive and comparative study. Data was collected with a study-specific questionnaire developed for this study. Descriptive statistics, Pearson Chi-square and RIDIT analyses were used to analyze the data. Results indicated that there was incongruence between patients' and nurses' perceptions regarding information provision (p < 0.05), both congruence regarding how much information was needed (eight out of 16 information items), but also significant incongruence on the remaining items(p < 0.05). The other finding was that patients residing out of Ankara city needed to obtain more information rather than the others. No relationship was found between demographic and situational characteristics and nurses' perceptions regarding information need of patients.
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Affiliation(s)
- Gülsüm Ançel
- Ankara University Faculty of Health Sciences, Aktaş Kavşağı, Plevne Cad. Şükriye Mah.No.5, 06340, Ankara, Turkey.
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Nicolaije KAH, Husson O, Ezendam NPM, Vos MC, Kruitwagen RFPM, Lybeert MLM, van de Poll-Franse LV. Endometrial cancer survivors are unsatisfied with received information about diagnosis, treatment and follow-up: a study from the population-based PROFILES registry. PATIENT EDUCATION AND COUNSELING 2012; 88:427-35. [PMID: 22658248 DOI: 10.1016/j.pec.2012.05.002] [Citation(s) in RCA: 53] [Impact Index Per Article: 4.1] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 01/30/2012] [Revised: 04/27/2012] [Accepted: 05/02/2012] [Indexed: 05/26/2023]
Abstract
OBJECTIVE To evaluate perceived level of and satisfaction with information received by endometrial cancer survivors, and to identify associations with socio-demographic and clinical characteristics. METHODS All patients diagnosed with endometrial cancer between 1998 and 2007, registered in the Eindhoven Cancer Registry, received a questionnaire including EORTC-QLQ-INFO25. RESULTS Seventy-seven percent responded (n=742). Most patients indicated receiving quite a bit information about their disease and medical tests. However, most patients were not (54%) or a little (24%) informed about the cause of their disease, and possible side effects (36%; 27%). Especially information about additional help, rehabilitation, psychological assistance, and expected results on social and sexual life was lacking. Five percent was not or a little (36%) satisfied. Four percent found the information not or a little (35%) helpful. Fifteen percent preferred more information. Younger age, more recent diagnosis, radiotherapy, absence of comorbidities, having a partner, having received written information, and higher educational level were associated with higher perceived information receipt. CONCLUSION Many endometrial cancer survivors are unsatisfied with received information. Several areas of information provision are experienced as insufficient. PRACTICE IMPLICATIONS More patient-tailored information is probably needed to provide optimal information. Implementation of Survivorship Care Plans might be a way to achieve this.
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Parry C, Lomax JB, Morningstar EA, Fairclough DL. Identification and correlates of unmet service needs in adult leukemia and lymphoma survivors after treatment. J Oncol Pract 2012; 8:e135-41. [PMID: 23277776 PMCID: PMC3439239 DOI: 10.1200/jop.2011.000464] [Citation(s) in RCA: 27] [Impact Index Per Article: 2.1] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 01/18/2012] [Indexed: 11/20/2022] Open
Abstract
PURPOSE To examine and characterize the psychosocial and health service needs of adult leukemia and lymphoma survivors who had completed active treatment within the past 4 years. METHODS Self-report surveys were completed by 477 survivors, age 18 to 85 years, to identify areas and correlates of unmet psychosocial, health, and instrumental service needs. Unmet service needs were rank ordered, and nonparametric tests were run to assess relationships. RESULTS The rate of unmet need was highest regarding sexual issues, handling medical and living expenses, emotional difficulties, employment, and health insurance. Women were more likely to report unmet child care needs than men; younger individuals were more likely to report needing help with emotional difficulties and family problems; and lower income was related to greater unmet need regarding medical and living expenses. Relationships were also observed among the service needs, suggesting overlapping areas of unmet need. CONCLUSION Adult leukemia and lymphoma survivors demonstrated a diverse range of needs, many of which were related to the psychosocial and physical sequelae of cancer. The findings suggest directions for service provision and development of standards for quality care in this underserved post-treatment population.
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Affiliation(s)
- Carla Parry
- University of Colorado Denver School of Medicine, Aurora, CO, USA.
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Xie B, Wang M, Feldman R, Zhou L. Exploring older and younger adults' preferences for health information and participation in decision making using the Health Information Wants Questionnaire (HIWQ). Health Expect 2012; 17:795-808. [PMID: 22783800 DOI: 10.1111/j.1369-7625.2012.00804.x] [Citation(s) in RCA: 35] [Impact Index Per Article: 2.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 05/24/2012] [Indexed: 11/29/2022] Open
Abstract
CONTEXT Existing measurements of patient preferences cover only a limited range of health information and participation in decision making. A broader approach is necessary to understand the breadth and variations in patient preferences. OBJECTIVE To explore the breadth and variances in patient preferences for health information and participation in decision making and to understand the relationship between age and each type of preference. DESIGN The Health Information Wants Questionnaire (HIWQ) was administered during May-December 2010 to gather data about the information and corresponding decision-making autonomy participants would want in seven areas: diagnosis, treatment, laboratory tests, self-care, complementary and alternative medicine (CAM), psychosocial factors and health-care providers. SETTING A large state university, public libraries and senior centres in Maryland, USA. PARTICIPANTS A convenience sample of 438 individuals, including 226 undergraduates (mean age = 20; SD = 2.15) and 212 community-dwelling older adults (mean age = 72; SD = 9.00). MAIN OUTCOME MEASURES Ratings on the information and decision-making items of the HIWQ. RESULTS Participants expressed higher levels of preference for information than for participation in decision making on six of seven subscales. On the psychosocial subscale, they expressed stronger desire for participation in decision making than for information. Age had no predictive effect on the overall preferences or specific preferences for information and participation in decision making about standard treatments and CAM. The predictive effect of age on the other types of preferences varied significantly. CONCLUSIONS Physicians should take into account the breadth and variations in patient preferences. The predictive effect of age on patient preferences varied depending on the specific area of preferences.
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Affiliation(s)
- Bo Xie
- School of Nursing and School of Information, University of Texas at Austin, Austin, TX, USA
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Mota DDCDF, Pimenta CADM, Caponero R. Fatigue in colorectal cancer patients: prevalence and associated factors. Rev Lat Am Enfermagem 2012; 20:495-503. [DOI: 10.1590/s0104-11692012000300010] [Citation(s) in RCA: 30] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/02/2011] [Accepted: 09/20/2011] [Indexed: 11/21/2022] Open
Abstract
This study identified the prevalence and predictors of fatigue in colorectal cancer (CRC) patients. Cross-sectional study with 157 adult CRC outpatients (age 60±11.7 years; 54% male; cancer stage IV 44.8%). The Piper Fatigue Scale-revised was used to assess fatigue scores. Socio-demographic, clinical, depression, performance status, pain and sleep disturbance data were assessed. Associations between fatigue and these data were analyzed through logistic regression models. Fatigue was reported by 26.8% patients. Logistic regression identified three predictors: depression (OR: 4.2; 95%CI 1.68-10.39), performance status (OR: 3.2; 95%CI 1.37-7.51) and sleep disturbance (OR: 3.2; 95%CI 1.30-8.09). When all predictors were present, the probability of fatigue occurrence was 80%; when none were present, the probability was 8%. The model's specificity and sensitivity were 81.9% and 58.6%, respectively. Through the assessment of depression, performance status and sleep disturbance, the probability of fatigue occurrence can be estimated, and preventive and treatment strategies can be rapidly implemented in clinical practice.
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van Mossel C, Leitz L, Scott S, Daudt H, Dennis D, Watson H, Alford M, Mitchell A, Payeur N, Cosby C, Levi-Milne R, Purkis ME. Information needs across the colorectal cancer care continuum: scoping the literature. Eur J Cancer Care (Engl) 2012; 21:296-320. [PMID: 22416737 DOI: 10.1111/j.1365-2354.2012.01340.x] [Citation(s) in RCA: 26] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/11/2022]
Abstract
Because cancer care requires a multifaceted approach, providing useful and timely information to people with colorectal cancer may be fragmented and inconsistent. Our interest was in examining what has and has not captured the attention of researchers speaking to the information needs of people with colorectal cancer. We followed Arksey and O'Malley's framework for the methodology of scoping review. Focusing solely on colorectal cancer, we analysed 239 articles to get a picture of which information needs and sources of information, as well as the timing of providing information, were attended to. Treatment-related information received the most mentions (26%). Healthcare professionals (49%) were mentioned as the most likely source of information. Among articles focused on one stage of the care continuum, post-treatment (survivorship) received the most attention (16%). Only 27% of the articles consulted people with colorectal cancer and few attended to diet/nutrition and bowel management. This study examined the numerical representation of issues to which researchers attend, not the quality of the mentions. We ponder, however, on the relationship between the in/frequency of mentions and the actual information needs of people with colorectal cancer as well as the availability, sources and timing of information.
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Affiliation(s)
- C van Mossel
- University of Victoria, Oxford Street, Victoria, BC, Canada.
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Beech N, Arber A, Faithfull S. Restoring a sense of wellness following colorectal cancer: a grounded theory. J Adv Nurs 2011; 68:1134-44. [DOI: 10.1111/j.1365-2648.2011.05820.x] [Citation(s) in RCA: 24] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/21/2023]
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Lian K, Davey C, Wake M, Cashell A. The Effects of Post-Radiation Education Pamphlet On Self-efficacy in Cancer Patients. J Med Imaging Radiat Sci 2011; 42:59-65. [DOI: 10.1016/j.jmir.2011.02.005] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/07/2010] [Revised: 02/07/2011] [Accepted: 02/16/2011] [Indexed: 10/18/2022]
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Development of cancer needs questionnaire for parents and carers of adolescents and young adults with cancer. Support Care Cancer 2011; 20:991-1010. [PMID: 21533810 DOI: 10.1007/s00520-011-1172-2] [Citation(s) in RCA: 7] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/21/2010] [Accepted: 04/18/2011] [Indexed: 10/18/2022]
Abstract
PURPOSE In order to improve the service delivery for the parents and carers of adolescents and young adults (AYAs) with cancer, it is important to develop measures which assess the specific issues and concerns faced by this group. The aims of this study were to describe the development and acceptability of a measure of unmet needs of parents and carers of AYA cancer survivors and to assess the prevalence of unmet needs among the respondents. METHODS A literature search and focus groups with consumers and health professionals were used to inform item development. AYA cancer survivors and their parents and carers were identified from seven hospitals in Australia. Parents and carers who consented for their contact details to be released to the research team were sent a paper-and-pencil questionnaire. One mailed reminder and one phone call reminder were made to non-responders. RESULTS The unmet needs survey consisted of eight domains and 150 items: (1) cancer treatment staff, (2) cancer treatment centre, (3) study, (4) work, (5) information, (6) feelings, (7) relationships and (8) daily life. Eighty-three parents and carers completed the survey. The mean number of high or very high unmet needs reported was 24, with information needs among the most prevalent high/very high unmet needs. CONCLUSIONS The questionnaire developed has demonstrable face and content validity and acceptability. Unmet needs are prevalent among parents and carers of AYA cancer survivors, suggesting the need for further psychometric testing of the measure.
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Concerns and quality of life before surgery and during the recovery period in patients with rectal cancer and an ostomy. J Wound Ostomy Continence Nurs 2011; 37:654-61. [PMID: 21052026 DOI: 10.1097/won.0b013e3181f90f0c] [Citation(s) in RCA: 58] [Impact Index Per Article: 4.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/26/2022]
Abstract
PURPOSE Rectal cancer is the most common reason for a person to undergo ostomy surgery. The aim of this study was to assess concerns and health-related quality of life (HRQOL) before surgery and during the first 6 months following ostomy surgery in the presence of rectal cancer. SUBJECTS AND SETTINGS The sample comprised 57 patients at a university hospital in Gothenburg, Sweden. Their median age was 66 years (range, 30-87); 35 men and 22 women participated in the study. METHODS Participants prospectively answered questionnaires preoperatively, and at 1, 3, and 6 months postoperatively. Concerns were assessed using the rating form of the Inflammatory Bowel Disease Patient Concerns, and HRQOL was evaluated using the 36-Item Short Form Health Survey. Results were compared with population norms. RESULTS Participants expressed concerns associated with developing cancer, being a burden on others, and related to the uncertain nature of disease. Health-related quality of life scores dropped significantly in 6 of 8 domains when preoperative scores were compared to those obtained 1 month postoperatively, but scores improved at 6 months. There were significant differences between preoperative study group scores and population norms on physical and emotional role function, social function, and for mental health domains. Significant differences persisted when population norms were compared to study group scores 6 months following surgery on all these domains except mental health. Participants identified good relations with significant others, social and leisure activities, psychological issues, and health as important for maintaining QOL. Obstacles to maintaining QOL included fatigue, pain, illness-induced limitations in life, and worries over what their new life would entail. CONCLUSION Surgical management of rectal cancer raises concerns and profoundly impairs QOL during the first several postoperative months.
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Taylor C, Richardson A, Cowley S. Restoring embodied control following surgical treatment for colorectal cancer: A longitudinal qualitative study. Int J Nurs Stud 2010; 47:946-56. [DOI: 10.1016/j.ijnurstu.2009.12.008] [Citation(s) in RCA: 37] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/02/2009] [Revised: 12/17/2009] [Accepted: 12/18/2009] [Indexed: 11/17/2022]
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Lee SY, Hawkins R. Why do patients seek an alternative channel? The effects of unmet needs on patients' health-related Internet use. JOURNAL OF HEALTH COMMUNICATION 2010; 15:152-66. [PMID: 20390984 DOI: 10.1080/10810730903528033] [Citation(s) in RCA: 52] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 05/13/2023]
Abstract
Breast cancer is the most common form of cancer found among women in the United States. During the course of the illness, women diagnosed with breast cancer need information and support to cope with the illness. To understand what leads women with breast cancer to consult the Internet for health-related information, we examined how unmet needs-needs that have not been satisfied-in regards to information and emotional support determine patterns of cancer patients' health-related Internet use. Using data collected from 122 women diagnosed with breast cancer, we found that the higher the unmet need for information was, the more likely individuals were to spend time in specialized health information. Likewise, the higher the unmet need for emotional support was, the more likely individuals were to spend time in social support services such as discussion groups. Implications for future research on unmet needs and the use of the Internet were discussed.
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Affiliation(s)
- Sun Young Lee
- School of Journalism and Mass Communication, University of Wisconsin-Madison, 5050 Vilas Communication Hall, 821 University Avenue, Madison, WI 53706, USA.
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Siefert ML. Fatigue, Pain, and Functional Status During Outpatient Chemotherapy. Oncol Nurs Forum 2010; 37:E114-23. [DOI: 10.1188/10.onf.114-123] [Citation(s) in RCA: 23] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
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Guadalupe K. Understanding a meningioma diagnosis using Mishel's theory of uncertainty in illness. ACTA ACUST UNITED AC 2010. [DOI: 10.12968/bjnn.2010.6.2.77] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/11/2022]
Affiliation(s)
- Kristen Guadalupe
- assistant professor of nursing, Case Western Reserve University, Cleveland, Ohio, USA
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McCaughan E, Prue G, Parahoo K. A systematic review of quantitative studies reporting selected patient experienced outcomes, with a specific focus on gender differences in people with colorectal cancer. Eur J Oncol Nurs 2009; 13:376-85. [DOI: 10.1016/j.ejon.2009.04.001] [Citation(s) in RCA: 8] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/13/2008] [Revised: 04/02/2009] [Accepted: 04/03/2009] [Indexed: 11/15/2022]
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Abstract
This prospective study evaluated the impact that uncertainty has on quality of life as cancer patients end the active phase of their treatment. The transition from patient status to survivor may be a particularly important point in recovery because it may affect how much stress cancer survivors experience. Guided by a within-subjects design framework, 53 cancer patients (predominantly breast cancer) participated in the present study as they approached the end of adjuvant treatment and were followed for 4 months. Distress levels increased the further patients moved away from the end-of-active treatment; however, preceding these ascending scores of distress was a period characterized by little unrest-best described as a "honeymoon" phase. Using hierarchical linear modeling, greater uncertainty 1 month after treatment ended predicted more functional and physical impairment 4 months after the completion of adjuvant treatment. In both cases, uncertainty accounted for nearly 70% of the variance of these changes over time. A period of rest may emerge as active treatment ends, but that it is short-lived, particularly if uncertainty regarding health emerges. Furthermore, uncertainty may a represent a key mechanism (and target for intervention) during the transition from cancer patient to survivor.
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42
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Lien CY, Lin HR, Kuo IT, Chen ML. Perceived uncertainty, social support and psychological adjustment in older patients with cancer being treated with surgery. J Clin Nurs 2009; 18:2311-9. [PMID: 19207802 DOI: 10.1111/j.1365-2702.2008.02549.x] [Citation(s) in RCA: 39] [Impact Index Per Article: 2.4] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/17/2023]
Affiliation(s)
- Chin-Yen Lien
- Department of Nursing, Taipei Veterans General Hospital, 365 Ming Te Rd, Pei Tou, Taipei, Taiwan
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43
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Myers J, Pellino TA. Developing New Ways to Address Learning Needs of Adult Abdominal Organ Transplant Recipients. Prog Transplant 2009; 19:160-6. [DOI: 10.1177/152692480901900210] [Citation(s) in RCA: 7] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/15/2022]
Abstract
Context The degree to which patients are knowledgeable about posttransplant care can affect outcomes and patients' satisfaction. Transplant team members must identify knowledge gaps, contributory factors, and innovative methods to address learning needs. Objective To identify patients' perceptions of their knowledge gaps and identify ways to improve current approaches to patient education. Design Nonexperimental. Setting Midwestern teaching hospital. Patients 726 adult abdominal organ transplant recipients. Intervention(s) A patient education survey was mailed out to solid-organ transplant recipients who met study criteria. A modified version of the Patient Learning Needs Scale (PLNS) was used to identify the recipients' learning needs. Additional questions on the survey addressed factors that we hypothesized would influence responses to the PLNS and asked patients which methods would help them learn during various phases of the transplant process. Main Outcome Measure(s) Statistical analysis was conducted on survey responses. Results Overall, PLNS scores were satisfactory in all 4 categories. Analysis of PLNS subscales revealed significantly lower scores in the quality of life/psychosocial subscale compared with the other 3 subscales. Significantly lower scores in the medications and follow-up categories of the PLNS items were found among the group whose length of stay was between 15 to 30 days compared with patients with shorter and longer stays. A variety of different methods are desired by patients in order to get information, especially before transplant.
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Affiliation(s)
- Jaime Myers
- University of Wisconsin Hospital and Clinics (JM), University of Wisconsin, School of Nursing (TAP)
| | - Teresa A. Pellino
- University of Wisconsin Hospital and Clinics (JM), University of Wisconsin, School of Nursing (TAP)
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Bowel problems, self-care practices, and information needs of colorectal cancer survivors at 6 to 24 months after sphincter-saving surgery. Cancer Nurs 2009; 31:389-98. [PMID: 18772664 DOI: 10.1097/01.ncc.0000305759.04357.1b] [Citation(s) in RCA: 88] [Impact Index Per Article: 5.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/08/2023]
Abstract
The aim of this study was to describe bowel problems, self-care practices, and information needs of patients who have recovered from the acute effects of sphincter-saving surgery for colorectal cancer. A retrospective, descriptive survey was conducted using a structured telephone interview and mailed questionnaires. The sample consisted of 101 patients who had undergone sphincter-saving surgery for colorectal cancer in the last 6 to 24 months. Most participants (71.3%) reported a change in bowel habits after surgery. The 6 most frequently reported gastrointestinal problems were incomplete evacuation (75.2%), excessive flatus (75.2%), urgency (73.3%), straining (61.4%), perianal soreness or itching (49.5%), and bloating (43.6%). Incontinence of feces (varying from smears to complete bowel action) was reported by 37.6% of participants. The most frequently reported information needs were related to diet (50.5%) and managing conditions such as diarrhea (31.7%), bloating/wind/gas (28.7%), pain (21.8%), and incomplete emptying of the bowel (18.8%). Patients who had recovered from the acute effects of sphincter-saving surgery for colorectal cancer reported a wide range of bowel problems and ongoing concerns about managing symptoms. Findings from this study provide valuable information to guide the development of educational resources to prevent or better manage bowel problems after surgery.
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Abstract
Cancer-related fatigue (CRF) is influenced and modulated by a number of critical factors, and the mechanism that is both necessary and sufficient to induce development of severe fatigue in patients with cancer has not yet been identified. Specific research efforts to understand the factors that may contribute to CRF development have been made, including studies of the direct effects of tumor burden, the effects of cancer treatment, and other pathophysiologic and psychosocial conditions. Compelling new hypotheses regarding CRF pathophysiology have been proposed, such as the pro-inflammatory hypothesis, the serotonin hypothesis, the vagal-afferent-activation hypothesis, the anemia hypothesis, and the adenosine triphosphate hypothesis; some of these have been tested in both animal models and humans and some in animals only. Gaining an understanding of the specific mechanisms related to the development of fatigue in patients with cancer and survivors requires further investigation. Pathophysiologic research in CRF could be applied in the clinic to improve CRF diagnosis and to enable administration of mechanism-driven interventions. A targeted intervention study with CRF as a primary end point also would be useful.
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Affiliation(s)
- Xin Shelley Wang
- Department of Symptom Research, University of Texas M.D. Anderson Cancer Center, Houston, Texas, USA.
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Uncertainty and Anxiety During the Diagnostic Period for Women With Suspected Breast Cancer. Cancer Nurs 2008; 31:274-83. [DOI: 10.1097/01.ncc.0000305744.64452.fe] [Citation(s) in RCA: 79] [Impact Index Per Article: 4.6] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/27/2022]
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Beckjord EB, Arora NK, McLaughlin W, Oakley-Girvan I, Hamilton AS, Hesse BW. Health-related information needs in a large and diverse sample of adult cancer survivors: implications for cancer care. J Cancer Surviv 2008; 2:179-89. [DOI: 10.1007/s11764-008-0055-0] [Citation(s) in RCA: 141] [Impact Index Per Article: 8.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/05/2008] [Accepted: 05/05/2008] [Indexed: 11/24/2022]
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50
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Shaha M, Cox CL, Talman K, Kelly D. Uncertainty in Breast, Prostate, and Colorectal Cancer: Implications for Supportive Care. J Nurs Scholarsh 2008; 40:60-7. [DOI: 10.1111/j.1547-5069.2007.00207.x] [Citation(s) in RCA: 102] [Impact Index Per Article: 6.0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/30/2022]
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