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1.
This ethnography of family caregiving explored why peristomal skin complications are common and undertreated among colorectal cancer survivors with intestinal ostomies. Data were collected through in-depth interviews with 31 cancer survivors and their family caregivers, fieldwork, structured assessments, and medical records review, and analyzed with qualitative theme and matrix analyses. Survivors who received help changing the skin barrier around their stoma had fewer obstacles to detection and treatment of peristomal skin complications. Half of the survivors received unpaid help with ostomy care, and all such help came from spouses. Married couples who collaborated in ostomy care reported that having assistance in placing the ostomy appliance helped with preventing leaks, detecting skin changes, and modifying ostomy care routines. In addition, survivors who struggled to manage ostomy care independently reported more obstacles to alleviating and seeking treatment for skin problems. Oncology nurses can improve treatment of peristomal skin problems by asking patients and caregivers about ostomy care and skin problems, examining the peristomal area, and facilitating routine checkups with a wound, ostomy, and continence nurse.  相似文献   

2.
Background/Aims Surgical treatments for rectal cancer include intestinal ostomy (externalization of the bowel to the abdominal wall) or, more frequently, an anastomosis (reconnection) of the rectum. These surgeries can give rise to long-term after-effects. We examined differences reported between survivors with ostomies (SO) versus anastomoses (SA) with respect to their work and volunteer activities, and how much they perceived their cancer affected these experiences. Methods We mailed our survey to 1,000 long-term (=5 years post-diagnosis) rectal cancer survivors in KP Northern California and KP Northwest during 2010-2011. Our overall response rate was 57.7% (577/1,000). The survey asked about current employment status and the impact of their cancer on labor force participation, demotions, job discrimination, forced retirement, and volunteer activities. Responses from 446 survivors (SA=292 (65%), SO=154 (35%)) were analyzed for differences in changes in work- and volunteer activities. Results Mean ages for both groups were significantly beyond the retirement age for most Americans (SA=72 yrs, SO=74 yrs). SAs were more likely to be currently working (FT+PT = 30% (89/292)) than SOs (FT+PT = 17% (25/151)), while SOs were more likely to be retired (67% (101/151) vs. 55% (160/292) (p<.05). Rates of permanent disability were similar between the groups-SOs=6.6% (10/151), SAs=5.5% (16/292). One-fifth of survivors (SA=22% (65/290), SA=18% (28/154)) reported volunteering on a regular basis an average of 11 (SOs) to 15 (SAs) hours/week. SAs reported more support from employers than SOs (64% (138/215) vs. 53% (60/113), p<.05), and from co-workers (68% (146/214) vs. 57% (64/112), p<.05). SAs and SOs did not differ in marital status at times of diagnosis or survey. The distribution of marital status shifted between diagnosis and survey: 72% (305/425) were married and 10% (43/425) were widowed at diagnosis; 62% (263/424) were married and 20% (84/424) were widowed at time of survey. No differences were reported by treatment about being forced into retirement. Discussion Compared to SOs, SAs were more likely to be currently employed, to receive higher rates of support from employers and coworkers, and to volunteer more hours. Perhaps interventions can be developed to allow ostomy survivors to participate more in these functions in their communities.  相似文献   

3.
Background Spiritual well-being (SpWB), defined as hopefulness, inner peace, and sensing a reason to be alive, is integral to health related quality of life (HRQOL). It is only partially related to spirituality and religiosity. The challenges of colorectal cancer (CRC) and subsequent bodily changes can affect SpWB. We explored expressions of SpWB reported by CRC survivors with ostomies. Methods We recruited all adult CRC survivors (>=5 years) with permanent ostomies who were members of Kaiser Permanente Northwest, Northern California, or Hawai'i during 2000-2006 to complete a mailed survey (n=283). We asked participants to respond to an open-ended question about the greatest challenge they encountered in having an ostomy. Responses from the 62% (176 of 283) of patients who answered this question were analyzed based on the City of Hope HRQOL model for content related to SpWB, and to identify and categorize the SpWB themes found. Results The responses of 51% (90 of 176) of participants contained SpWB content. Seventeen SpWB themes were identified, reflecting positive, negative, and ambivalent dimensions. Some responses contained multiple themes but each theme was coded only once for each person. Fifty-three of 90 people (59%) expressed positive themes which included "positive attitude" "appreciate life more" "helping others helps me" "strength through religious faith" "leading an active life" and "I am fortunate." Negative themes included "struggling to cope" "not feeling 'normal'" and "loss" and were least common, expressed by only 28 of 90 people (31%). Ambivalent themes were most common (67%; 60 of 90 individuals) and included "learning acceptance" "ostomy is the price for survival" "reason to be around despite suffering" and "continuing to cope and function despite challenges." Discussion These CRC survivors with ostomies infrequently cited negative SpWB as a major challenge, though the greatest number of SpWB responses were ambivalent. More commonly, SpWB themes were mentioned as a source of resilience or part of the struggle to adapt to their altered body after cancer surgery. SpWB interventions should be broadly constructed to include the many types of SpWB, as opposed to narrowly defining SpWB only in terms of spirituality or religiosity.  相似文献   

4.
PURPOSE: This secondary analysis was conducted to expand our understanding of the challenges men with ostomies face regarding intimate relationships and sexual functioning. We examined quantitative and qualitative data to examine sexual functioning, intimate relationships, and health-related quality of life (HR-QOL) among military veterans who are living with an intestinal stoma. SETTING: Three Veterans Health Administration sites. SAMPLE: Four hundred eighty-one male veterans. METHODS: Case-control, mixed-methods design; cases were those who had ostomies for at least 2 months, and controls had a similar major intestinal surgical procedure that did not result in an ostomy. Quantitative and qualitative data on sexual functioning, relationships, and other dimensions of HR-QOL were collected using the modified City of Hope Quality of Life-Ostomy questionnaire. RESULTS: The overall response rate was 49%. Prevalence of erectile dysfunction was significantly higher among ostomates compared with controls (P < .001). Although a greater proportion of veterans with ostomies reported being sexually active before surgery compared with controls (P < .001), the proportion of men who had resumed sexual activity after surgery is significantly lower among the ostomy group (P = .015). Compared with veterans with ostomies who did not resume sexual activity after surgery, those who were sexually active reported a higher total HR-QOL score and higher scores on all 4 modified City of Hope Quality of Life-Ostomy dimensions (psychological, social, physical, and spiritual well-being). Veterans with ostomies who had resumed sexual activity after their ostomy also reported that their ostomy had caused significantly less interference with social activities, less isolation, less interference with their personal relationships, and less interference with their ability to be intimate. These men also reported less difficulty adjusting to the ostomy. Results of qualitative analyses showed that problems with intimacy and sexual function are among the greatest challenges faced by ostomates. CONCLUSION: Presence of an ostomy was associated with lower rates of sexual activity and higher erectile dysfunction. The lower rates of sexual activity and sexual satisfaction were related to the social and psychological dimensions of HR-QOL among men with ostomies. Interventions to address sexual concerns of male ostomates and their partners may prevent decrements to HR-QOL for these patients. IMPLICATIONS FOR PRACTICE: Results of the study have implications for the clinical nurse specialist role in supporting and educating patients with ostomies to minimize the negative impact of an intestinal ostomy on sexual health and HR-QOL. Implications also relate to the need to educate current and future nurses about the importance of assessing sexual health.  相似文献   

5.

Purpose

The journey from diagnosis through treatment to survivorship can be challenging for colorectal cancer (CRC) survivors with permanent ostomies. Memories of both the positive and negative health-care interactions can persist years after the initial diagnosis and treatment. The purpose of this paper is to describe the health-care experiences of long-term (>5 years) CRC survivors with ostomies.

Methods

Thirty-three CRC survivors with ostomies who were members of Kaiser Permanente, an integrated care organization, in Oregon, southwestern Washington and northern California participated in eight focus groups. Discussions from the focus groups were recorded, transcribed, and analyzed for potential categories and themes.

Results

Health-care-related themes described CRC survivors’ experiences with diagnosis, treatment decision-making, initial experiences with ostomy, and survivorship. Participants discussed both positive and negative health-care-related experiences, including the need for continued access to trained nurses for ostomy self-care, access to peer support, and resources related to managing persistent, debilitating symptoms.

Conclusions

Long-term CRC survivors with ostomies have both positive and negative health-care experiences, regardless of health-related quality of life (HRQOL) and gender. Long-term support mechanisms and quality survivorship care that CRC survivors with ostomies can access are needed to promote positive adjustments and improved HRQOL.

Structured abstract

The current literature in CRC survivorship suggests that HRQOL concerns can persist years after treatment completion. The coordination of care to manage persistent late- and long-term effects are still lacking for CRC survivors living with an ostomy. Findings from this qualitative analysis will aid in the development of support strategies that foster more positive adjustments for CRC survivors living with an ostomy and support their ongoing ostomy-related needs.  相似文献   

6.
南海市造口病人生活质量调查研究   总被引:17,自引:2,他引:15  
目的:提高南海市造口病人生活质量。方法:发放自行设计的调查表,内容包括造口病人个人情况,造口及营养情况,造口病人社交及家庭生活情况,调查了南海市160例造口病人,逐一上门访视,召开联谊会。结果:113例占70.6%造口病人基本能自理造口;144例占90%家庭能接受造口病人,相处较好;104例占65%有造口周围皮肤问题;98例占61.2%对造口用品认识较少;131例占81.9%营养不均衡。已婚142例,其中70例配偶健在,只有20例有夫妻性生活;69例占43.1%参加社交活动。结论:160例造口病人生活质量较低,必须加强镇(区)社区护士对造口护理知识培训,定期访视并适时组织造口病人联谊活动,提供社会支持,才能提高造口病人生活质量。  相似文献   

7.
ObjectivesWe examined patient and informal caregiver unmet needs to identify areas for targeted supportive care interventions and programs to enhance both patient and informal caregiver experience.Data SourcesA total of 30 patients who underwent ostomy surgeries for bladder or colorectal cancers and 13 informal caregivers participated in the study. Patients were enrolled at the Icahn School of Medicine at Mount Sinai between 2017 and 2018. Qualitative data were collected by individual interviews, audiotaped, and transcribed verbatim. Transcribed data were iteratively analyzed using Atlas.ti to explore patient and caregiver unmet needs.ResultsPatients and informal caregivers reported having insufficient psychological preparation for ostomy surgeries, and very limited hands-on training on stoma care and utility of stomal appliances. Unmet psychological needs related to depression, anxiety, and distress caused by changes in body image and sexual, urinary, and bowel function were reported. Patients and caregivers also reported significant patient medical needs in the acute postoperative period including pain, fatigue, sleep disturbance, inflammation, and complications resulting in hospital readmissions. Colorectal cancer patients specifically experienced significant challenges with changes in diet and nutrition that contributed to ostomy care burden. Both patients and caregivers recommended seeking psychological and social support to enhance both patient and caregiver emotional adjustment to life after ostomies.ConclusionMeeting patient and informal caregiver unmet informational and supportive care needs is imperative to improve their quality of life and adjustment.Implications for Nursing PracticeAn effective supportive care plan should be designed and utilized in clinical care to improve ostomy patients’ and caregivers’ outcomes.  相似文献   

8.
McCarthy NJ 《Postgraduate medicine》2004,116(4):39-40, 42, 45-6
Earlier detection of invasive and noninvasive breast cancer and more effective treatments have led to both an improved prognosis for women with breast cancer and an increasing number of long-term survivors. However, such advances present various physical and emotional health challenges to patients facing breast cancer and its aftermath. Thus, understanding of the specific medical and psychosocial problems associated with survivorship is paramount in primary care.  相似文献   

9.
Various clinical studies throughout the years have shown that individuals with ostomies are a unique group facing adjustment demands. One of the most important challenges for an individual with an ostomy is coping with the physiological and psychological changes. The purpose of this study was to describe coping styles of older adults after undergoing ostomy surgery and to explore its helpfulness in dealing with the stressors related to having an ostomy. Lazarus and Folkman's theory on stress and coping was used as the framework to guide this study. A sample of 27 participants ranging from age 50 to 84 years was obtained from an ostomy association in southeastern Louisiana. Participants were asked to complete a demographic data form and the Revised Jalowiec Coping Scale. This revised scale measured eight coping styles related to Use and Effectiveness. Findings revealed significant differences existed among the means of the eight measures for both Use and Effectiveness at p < .01. Results demonstrated that the optimistic and self-reliant styles of coping were the most frequently used as effective styles for coping with an ostomy. This indicated a positive outlook and dependence on oneself rather than dependence on others when coping with the stressors of having an ostomy. There were no statistically significant differences related to gender or ostomy type. Also, aging did not appear to be a factor when considering coping styles of older adults with ostomies. The nursing role should include assessment of the individual preoperatively to identify fears, concerns, and stressors related to having an ostomy. Also, nurses can provide education on disease management, assist with identification of ineffective coping mechanisms, and promote effective coping skills and stress management techniques.  相似文献   

10.
目的 观察直肠癌造口术后病人的焦虑状况,探讨延续护理干预对直肠癌造口术后病人焦虑状态的影响.方法 对31例直肠癌造口术后出院康复的病人实施延续护理干预,采用焦虑自评量表(SAS)评定31例病人干预前后的焦虑状态.结果 干预前31例病人中有焦虑症状者17例(54.84%),经延续护理干预后,病人的焦虑程度较干预前明显降低(t=6.142,P=0.000).结论 直肠癌造口术后的病人仍存在一定程度的焦虑状态,延续护理干预可有效改善直肠癌造口术后病人的焦虑状态.  相似文献   

11.
Title.  The psychosocial impact of recurrence on cancer survivors and family members: a narrative review.
Aim.  This paper is a report of a review undertaken to identify, critically analyse and synthesize the psychosocial experience of cancer recurrence for survivors and family members.
Background.  Recurrence of cancer is an event after which life changes for families. Individuals move from being short- or long-term survivors of cancer to being patients once more. Families move from a state of fear of recurrence to one of uncertainty and distress as a result of the new crisis.
Data sources.  MEDLINE, CINAHL and CancerLit databases were searched for the period January 1980–2007. Reference lists of papers were conducted for relevant studies. The search terms recurrence, recurrent cancer, experience, survivor and family were searched for separately and in combination.
Review methods.  A narrative review was conducted. Data were categorized in terms of issues during survivorship and concerns after recurrence.
Results.  Three main categories were identified that explained survivors' and families' experiences of recurrent cancer: (1) fear of recurrence during survivorship, (2) when cancer recurs: families facing new challenges and (3) distress because of recurrence.
Conclusion.  Recurrence is a distressing experience for survivors and families because they have to face again psychosocial effects of cancer, such as uncertainty, distress and concerns about death. Care should not be addressed simply to survivors, but should include the general well-being of families beyond their survivorship and support to manage better psychosocial issues occurring when a member has a recurrence of cancer.  相似文献   

12.
PurposeSurvival from rectal cancer has improved substantially. Understanding the consequences of treatment is important to optimise patient support and minimise impact on daily life. We aimed to define the long-term prevalence of pelvic dysfunction following curative rectal cancer surgery (+/− radiotherapy) within the context of overall quality of life.MethodsWe evaluated bowel, urinary and sexual function and quality of life using three validated questionnaires in patients treated for rectal cancer. This group was compared to patients undergoing abdominal surgery without pelvic dissection for colon cancer during the same time period.ResultsThe response rate was 57% (381/667) with a median time interval of 4.4 years. A subset of rectal patients documented persistent problems with faecal leakage (16%); requiring to alter daily activities (18%); always needing to wear a protective pad (17%); rarely or never emptying their bowels fully (31%); difficulty controlling the passage of gas (32%) and requiring to modify diet (30%). Altered bowel function was found to impact on overall quality of life. Men reported increased erectile function difficulties. Pre-operative radiotherapy was associated with increased defecation problems as was low level of anastomosis (≤6 cm).ConclusionIn keeping with emergent evidence, this study has quantified the extent of late adverse effects with a sub-set of rectal cancer patients reporting persistent bowel function problems. The implications are now to consider current follow-up services and to ‘trial’ new models of comprehensive assessment and interventions in patients who are ‘at risk’ of experiencing late adverse effects of treatment.  相似文献   

13.

Purpose

Research examining effects of ostomy use on sexual outcomes is limited. Patients with colorectal cancer were compared on sexual outcomes and body image based on ostomy status (never, past, and current ostomy). Differences in depression were also examined.

Methods

Patients were prospectively recruited during clinic visits and by tumor registry mailings. Patients with colorectal cancer (N?=?141; 18 past ostomy; 25 current ostomy; and 98 no ostomy history) completed surveys assessing sexual outcomes (medical impact on sexual function, Female Sexual Function Index, International Index of Erectile Function), body image distress (Body Image Scale), and depressive symptoms (Center for Epidemiologic Studies Depression Scale—Short Form). Clinical information was obtained through patient validated self-report measures and medical records.

Results

Most participants reported sexual function in the dysfunctional range using established cut-off scores. In analyses adjusting for demographic and medical covariates and depression, significant group differences were found for ostomy status on impact on sexual function (p?<?.001), female sexual function (p?=?.01), and body image (p?<?.001). The current and past ostomy groups reported worse impact on sexual function than those who never had an ostomy (p?<?.001); similar differences were found for female sexual function. The current ostomy group reported worse body image distress than those who never had an ostomy (p?<?.001). No differences were found across the groups for depressive symptoms (p?=?.33) or male sexual or erectile function (p values?≥?.59).

Conclusions

Colorectal cancer treatment puts patients at risk for sexual difficulties and some difficulties may be more pronounced for patients with ostomies as part of their treatment. Clinical information and support should be offered.  相似文献   

14.
目的利用质性研究深入探讨直肠癌造口术患者生活质量和心理体验。方法利用EdmundHusserl理论方法对112例直肠癌造I:1术患者进行深入访谈,并利用Colaizzi7步法进行分析。结果患者术后主要心理体验以情绪反应、对预后的不确定感、亲情渴求和社会支持、经济压力为主。112例患者中出现抑郁96例(85.71%),出现自卑情绪86例(76.79%);对预后不确定78例(69.64%);表现为渴求家人的支持101例(90.18%);感受到较大经济压力108例(96.430A);75例(66.96%)患者对术后生活表现出极不满意,仅有2例(1.79%)表示非常满意。结论应对直肠癌造口术患者尽早进行干预,以帮助其重塑自我,重返社会。  相似文献   

15.
Jo Hyland 《Gastroenterology nursing》2002,25(6):241-4; quiz 244-5
Basic ostomy care can be intimidating because nurses don't often see colostomies, ileostomies, or urostomies. While there are as many different ostomies as there are people who have them, there are some commonalities in the care of the stoma. These can be generalized to all stomas, regardless of the type of output. Some care, however, is specific to the placement of the stoma and the type of effluent flowing from the opening. This article will provide the gastroenterology nurse an overview of the basic features of ostomies as well as routine ostomy care.  相似文献   

16.
AIM: This paper reports a study whose aim was to assess the quality of care in ostomy patients seen from a patient perspective. BACKGROUND: A stoma operation causes profound changes in a patient's life because of resulting physical damage, disfigurement, loss of bodily function, and change in personal hygiene. Such changes are a cause of major concern for patients and raise important issue for the quality of care. METHODS: The study group comprised patients who had undergone a colostomy for rectal cancer or an ileostomy for ulcerative colitis, all attending a stoma outpatient clinic. Quality of care was assessed using the identity-oriented dimension of the validated questionnaire 'Quality of Care from the Patient's Perspective'. Forty-two ileostomy and 49 colostomy patients completed the questionnaire. RESULT: While the vast majority of patients in both groups thought that most topics in the questionnaire were important, most rated many aspects of their quality of care as unsatisfactory. One-third of the colostomy patients and one-half of the ileostomy patients were dissatisfied with the information they received about the results of medical examinations and laboratory tests, and an even higher proportion was dissatisfied with their opportunities to participate in the decision-making process or to discuss sexual matters. Stoma-related complications, which occurred in 71% of the ileostomy patients and in 43% of the colostomy patients, had no impact on these results. CONCLUSION: Information and counselling for patients having ostomies, both on the part of specialist nurses and colorectal surgeons, appeared to deficient, suggesting that standards for quality of care require continuous evaluation and revision.  相似文献   

17.
BackgroundAdolescents and young adults diagnosed with cancer are expected to become long-term survivors. A cancer diagnosis during this critical life stage can have a profound impact on normal psychosocial development, increasing risk for adverse long-term and late effects and influencing quality of life.PurposeThe purpose of this article was to review the impact of cancer on some key psychosocial aspects of adolescent and young adult cancer survivors, including the impact of a cancer diagnosis on psychosocial development, the effectiveness of current models of care in relation to addressing the psychosocial needs of this patient population, and the evaluation of current Canadian models of care and implications for clinical practice.MethodsA review of the English literature from 2002 to 2012 was performed using PubMed (National Center for Biotechnology Information), Ovid MEDLINE, and Google Scholar.Results and ConclusionsVarious survivorship care models have been implemented to assist adolescent and young adult cancer survivors in addressing the psychosocial issues associated with a cancer diagnosis, although the type of model used varies based on institutional resources and survivors' needs. Preliminary survivorship research identifies the need for long-term follow-up care including ongoing assessment for psychosocial issues. The literature also identifies the need to educate adolescents and young adults regarding their disease, which will empower these patients to act as their own health care advocates, resulting in improved health-related outcomes and overall quality of life. However, despite the increasing focus on the benefits of good survivorship care and the availability of government-funded survivorship programs in Canada, programs are often underused by this patient population. Survivorship care is a new focus for research that requires more evaluation regarding the feasibility and effectiveness of the different care models in meeting the psychosocial needs of adolescent and young adult cancer survivors.  相似文献   

18.
This study investigates how cancer survivors construct their identities and the impact on their psychological health, as measured by depression and survivor self-efficacy. Fourteen young adult survivors of pediatric cancer participated in a customized social networking and video blog intervention program, the LIFECommunity, over a 6-month period. Survivors were asked to share their stories on various topics by posting video messages. Those video blog postings, along with survey data collected from participants, were analyzed to see how cancer survivors expressed their identities, and how these identities are associated with survivors' psychosocial outcomes. In survivors who held negative stereotypes about cancer survivors, there was a positive relationship with depression while positive stereotypes had a marginal association with cancer survivor efficacy. Findings indicate that although pediatric cancer survivors often do not publicly discuss a "cancer survivor identity," they do internalize both positive and negative stereotypes about cancer survivorship. It is important for practitioners to be aware of the long-term implications of cancer survivor identity and stereotypes.  相似文献   

19.
Patients with ileal pouches and ostomies present with management issues that are challenging to the clinician. Endoscopy plays a significant role in diagnosing and guiding therapy in such patients. Unfortunately, there are very few prospective studies that evaluates endoscopy in these situations. Nevertheless, it is clear that endoscopy remains a powerful tool that is important for diagnosis and therapy of complications unique to these surgical procedures. It seems prudent to advocate endoscopic cancer surveillance for patients with pouches and ostomies; however, it remains to be seen whether these efforts will ultimately have an impact on long-term patient morbidity and mortality.  相似文献   

20.
Quality of life in young adult survivors of childhood cancer   总被引:12,自引:1,他引:11  
In recent years the necessity of measuring quality of life in childhood cancer survivors has been stressed. This paper gives an overview of the results of studies into the quality of life (QL) of young adult survivors of childhood cancer and suggest areas for future research. The review located 30 empirical studies published up to 2001. The results are described in terms of the following QL dimensions: physical functioning (QL, general health), psychological functioning (overall emotional functioning, depression and anxiety, self-esteem), social functioning (education, employment, insurance, living situation, marital status and family), and sexual functioning. Factors related to survivors' QL are reported: demographics and illness- and treatment related variables. Although the literature yields some inconsistent findings, a number of clear trends can be identified: (a) most survivors reported being in good health, with the exception of some bone tumour survivors; (b) most survivors function well psychologically; (c) survivors of CNS tumours and survivors of acute lymphoblastic leukaemia (ALL) are at risk for educational deficits; (d) job discrimination, difficulties in obtaining work and problems in obtaining health and life insurance were reported; (e) survivors have lower rates of marriage and parenthood; (f) survivors worry about their reproductive capacity and/or about future health problems their children might experience as a result of their cancer history. There is a need for methodological studies that measure QL among survivors of childhood cancer more precisely by taking into account the effects of the severity of the cancer and the long-term impact of different treatments. Additional data are needed to help us understand the needs of survivors and to identify those subgroups of survivors who are at greatest risk for the adverse sequelae of the disease and its treatment.  相似文献   

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