I know some people that do not want to know anything about what will happen to them. They go into surgery, etc. not knowing what to expect but that is how they roll. I know others who you cannot keep away from researching (is it really researching if you only use the Internet?) whatever the issue is and must know everything.
Strangely, I find myself somewhere on that spectrum. I have not, and will not, research my actual cancer. I don’t really see a point. I did read two papers at the National Institutes of Health (NIH) about the chemo-radiation protocol since I had never heard of such. I did a minor bit of research on my three doctors. That is about all. Until a few days ago.
I am in need of understanding more of what will happen the next few weeks and months. I am not looking into anything pertaining to my body per se (the actual type of cancer, etc.) but rather the procedures. The surgeon, when I asked how long the various protocols that will happen the day of surgery take (take me in -> pre-surgery set up -> surgery -> recovery, etc.) mentioned setting up the robot and kept talking. That was all I ever heard about the surgery other than it is laparoscopic. I was given some information on the stoma but not all I would have liked.
The last two posts showed you some of what my research found. Yesterday’s post with the videos and information on da Vinci took me longer than any other post here. I probably watched 20 videos looking for the most informative (first for me, then for you) and then those that I felt would not gross anyone out. But I learned. A lot. Hell, give me the controls – at this point I could probably do a decent surgical job at it myself. Well, maybe. Ok, maybe not, but you get the point.
This is the last of this three part series, mainly because things still suck and get harder every day and I want to talk about that. I am ending this short series with published papers and their abstracts. If the full text was available without a subscription I included it here. I purposely put the ones about sex at the end, my way to get you to at least read the titles! The formatting of the abstracts may be a bit funky, the links you see were in the original, I simply cut and pasted (shouldn’t it be cutted and pasted?) and didn’t want to spend the time to make it look perfect. Sorry. But you see, I have cancer …
CLICK HERE to see the papers!
Life after stoma creation.
- Surgical Department, Herlev Hospital, Herlev Ringvej 75, 2730 Herlev, Denmark. anne.k.danielsen@gmail.com.
Abstract
BACKGROUND:
Stoma creation is a surgical operation where the surgeon makes an artificial opening on the abdomen from where the bowel is taken out. It is a radical treatment with permanent physical signs of bodily change. In general, it leads to loss of a central and personal physical function, as well as an alteration in the bodily design. Research in the field may provide additional information about central elements when adapting to life with a stoma. There are currently no studies that adequately focus on the relationship between health-related quality of life and stoma construction in a Danish context, neither for temporary or permanent construction, nor in relation to the importance of stoma handling.
PURPOSE:
The overall objective of the study was to investigate health-related quality of life related to stoma creation and patient education. Methodologically, the project was implemented as a mixed methods study in which qualitative interview studies and two systematic literature reviews identified interventions, which were subsequently tested in a clinical case/control study. Finally the case/control study was made subject to an economic analysis. The project is based on 6 papers reporting the results.
ARTICLE 1: Impact of a temporary stoma on patients everyday-lives: feelings of uncertainty while waiting for closure of the stoma. The study included 7 participants who were interviewed in focus groups. The results indicated that patients experienced a high degree of uncertainty in connection with the stoma being temporary. At the same time, participants had a strong need to control both their physical appearance and their changed bodily functions. Participants opted for education programs involving teachers with a stoma.
ARTICLE 2: Learning to live with a Permanent Intestinal Ostomy: Impact on everyday life and Educational Needs. The study included 15 participants who were interviewed in groups related to whether they were treated for cancer or non-cancer. The results showed that participants often experienced the stoma as a taboo, and emotions related to stigma were identified. In addition, participants were influenced by the stoma in various ways, and the stoma imposed some restrictions on the participants. Participants pointed at group-based education, as well as the involvement of teachers who had a stoma.
ARTICLE 3: Spouses of patients with a stoma lack information and support and are restricted in their social and sexual life: a systematic review. The study included 6 articles based on quantitative and qualitative data showing that spouses were affected in several ways by the construction of the stoma. The results pointed at spouses not being informed and supported sufficiently by neither enterostoma therapists or surgeons.
ARTICLE 4: Patient education has a positive effect in patients with a stoma – a systematic review The study included 7 studies, all with quantitative results. They showed that patient education had a positive impact in several areas including shorter hospital stay, less time until proficiency in stoma management is reached, an increase in quality of life, increased knowledge about the stoma, and increased self-efficacy.
ARTICLE 5: Health-related quality of life increases when patients with a stoma attend patient education – a case/control study. The study included 50 participants shortly after stoma creation. The results showed that the disease-specific quality of life was significantly increased in the intervention group, while generic health-related quality of life was positively affected in different dimensions in both groups.
ARTICLE 6: Decreased costs with patient education after stoma creation. The study was an economic analysis based on participants in Article 5. The results indicated that there were fewer unplanned re-admissions related to the stoma, and that patients in the intervention group did not visit the general practitioner as much as patients in the control group. Furthermore, we found that the average cost per patient did not increase when establishing a patient education program.
CONCLUSION:
The thesis concludes that patient education has a positive impact on patients’ quality of life, and that costs are reduced. At the same time, it is concluded that living with a stoma is a complex situation, which also involves spouses and close relatives, and that patient education must be based on multiple interventions that are not all explored in this project.
PMID: 24083536
[Indexed for MEDLINE]
Full paper not available (to me).
Rev Lat Am Enfermagem. 2017; 25: e2961.
Ostomy patients’ perception of the health care received
ABSTRACT
Aim:
to describe ostomy patient’s perception about health care received, as well as their needs and suggestions for healthcare system improvement.
Method:
qualitative phenomenological study was conducted, involving individual and semi-structured interviews on the life experiences of 21 adults who had a digestive stoma. Participants were selected following a purposive sampling approach. The analysis was based on the constant comparison of the data, the progressive incorporation of subjects and triangulation among researchers and stoma therapy nurses. The software Atlas.ti was used.
Results:
perception of health care received is closely related to the information process, as well as training for caring the stoma from peristomal skin to diet. It is worthy to point out the work performed by stoma care nurses ensuring support during all stages of the process.
Conclusion:
findings contribute to address the main patients’ needs (better prepared nurses, shorter waiting lists, information about sexual relation, inclusion of family members all along the process) and recommendations for improving health care to facilitate their adaptation to a new status of having a digestive stoma.
Click here to read the entire paper
Ostomy-patients-perceptionExperiences and coping with the altered body image in digestive stoma patients.
Abstract
OBJECTIVE:
to describe the coping of stoma patients with the news about the ostomy, as well as to analyze the meaning and the experience of their new bodily reality.
METHOD:
qualitative phenomenological study undertaken through semistructured interviews with 21 stoma patients. The analysis was based on the constant comparison of the data, the progressive incorporation of subjects and triangulation among researchers and stomal therapy nurses. The software Atlas.ti was used.
RESULTS:
two main categories emerge: “Coping with the news about receiving a stoma” and “Meaning and experience of the new bodily reality”. The informants’ answer varies, showing situations that range from the natural acceptance of the process to resignation and rejection. The previous experiences of other family members, the possible reconstruction of the stoma or the type of illness act as conditioning factors.
CONCLUSIONS:
the coping with the news about the stoma is conditioned by the type of illness, although the normalization of the process is the trend observed in most informants. Nursing plays a fundamental role in the implementation of cognitive-behavioral interventions and other resources to promote the patients’ autonomy in everything related to care for the stoma.
- PMID: 27982309
- PMCID: PMC5171781
- DOI: 10.1590/1518-8345.1276.2840
Click here to read the entire paper
body-image-stomaPerceived Barriers and Home Care Needs When Adapting to a Fecal Ostomy: A Phenomenological Study.
Burcu Cengiz, MSc, RA, Department of Public Health Nursing, Dokuz Eylul University Faculty of Nursing, Izmir, Turkey. Zuhal Bahar, PhD, Department of Public Health Nursing, Koc University School of Nursing, Istanbul, Turkey.
Abstract
PURPOSE:
The aim of this study was to determine perceived barriers to adaptation to life with a fecal ostomy based on the Health Belief Model and to reveal home care needs related to these perceptions.
DESIGN:
Phenomenological study.
SUBJECTS AND SETTING:
Twelve participants undergoing ileostomy or colostomy within 3 months of data collection participated in the study. The participants were recruited from Stomatherapy Outpatient Clinic of Dokuz Eylül University Hospital. Their mean age was 54.41 ± 19.14 years (mean ± SD). Eight (67%) underwent ostomy surgery 2 to 3 months prior to study participation; 9 (75%) underwent stoma surgery for the treatment of colorectal cancer, 5 (42%) had a temporary stoma, and 8 also received chemotherapy for the management of an underlying malignancy.
METHODS:
A semistructured interview form was used to collect data, and obtained data were analyzed with inductive content analysis. The questions were based on the Health Belief Model and were directed at identifying challenges to adaptation to life at home and home care needs in patients with stoma.
RESULTS:
Inductive content analysis identified 4 main themes: “restriction of daily life activities”; “factors affecting adaptation to stoma”; “need for health professionals”; and “emotional effects.” The theme, need for health professionals, was expressed by the highest number of the participants. The respondents explained that services from ostomy nurse specialists should begin in the hospital and continue into the home. Participants suggested that ostomy nurses are needed to improve self-care skills via telephone contact and home visits. They also expressed the need for nursing interventions for the management of adverse effects associated with chemotherapy.
CONCLUSIONS:
Individuals experience physical, mental, and social barriers when adapting to live with a new stoma and when receiving chemotherapy for underlying cancer. Additional services from ostomy nurses are needed to aid patients when adapting to these challenges.
- PMID: 27564927
- DOI: 10.1097/WON.0000000000000271
Full paper not available (to me).
Impact of a temporary stoma on patients’ everyday lives: feelings of uncertainty while waiting for closure of the stoma.
- Department of Surgery, Herlev Hospital, University of Copenhagen, Herlev, Denmark. anne.kjaergaard.danielsen@regionh.dk
Abstract
AIMS AND OBJECTIVES:
To examine patients’ experiences of impact of a temporary stoma on their everyday life. Furthermore, we wanted to generate new knowledge and comprehension of learning how to live with a temporary stoma.
BACKGROUND:
There are many aspects, largely unexplored, that may influence patients’ adaptation to life with a stoma. Amongst these, being in a temporary state is relatively unexplored and may have a restrictive impact on patients’ adaptation.
DESIGN:
Focus group interviews conducted with seven patients with temporary stoma were set up with a hermeneutic phenomenological perspective.
METHODS:
Data were processed using qualitative content analysis.
RESULTS:
The creation of a temporary stoma led to feelings of uncertainty related to being in an undecided situation. Stoma creation led to feelings of stigma and worries about disclosure. Patients proposed group-based patient education with lay educators with a stoma to make sure that information about the stoma was based on real-life experiences.
CONCLUSIONS:
Creation of a temporary stoma was linked to uncontrollable feelings of uncertainty. Professionals should assist patients with focus on coping strategies, as they are associated with positive re-evaluation of the situation. Introducing a coherent and structured learning environment involving both lay educators with a stoma and group-based learning would be useful.
RELEVANCE TO CLINICAL PRACTICE:
Nurses and other health professionals should support patients in problem-focused coping strategies. These strategies may be supported when patients have a high sense of coherence. Furthermore, patients’ disclosure of the stoma as a way to master feelings of stigma should be facilitated. Stoma education is central for patients, and group-based learning that involves lay educators with a stoma is seen as a way to empower patients with temporary stomas.
© 2013 Blackwell Publishing Ltd.
- PMID: 23279240
- DOI: 10.1111/jocn.12011
Full paper not available (to me).
Spouses of patients with a stoma lack information and support and are restricted in their social and sexual life: a systematic review.
Department of Surgery, Herlev Hospital, University of Copenhagen, Herlev Ringvej 75, 2730, Herlev, Denmark, anne.k.danielsen@gmail.com.
Abstract
PURPOSE:
A permanent stoma has a large impact on everyday life with several physical, mental, and social impairments for the individual. It seems obvious that if persons with stomas are affected socially by the stoma creation, it is likely that the family and/or relatives will be affected as well. The objective of this systematic review was to explore how stoma creation may affect spouses of patients with stomas.
METHODS:
A systematic review was undertaken based on database searches including studies published from 1950 to 2012. We applied a method of synthesis based on narrative summaries of both qualitative and quantitative results being assessed in parallel processes and finally included in a joint synthesis of results on a study level.
RESULTS:
We identified 17 studies and included 6 studies. Spouses wanted to be more involved in the stoma education and specifically wanted more focus on the psychosocial aspects of stoma creation. Furthermore, spouses’ sexual life was seriously affected, and their social life was restricted. In general, spouses wished for more support from the health care sector as well as from family and friends.
CONCLUSIONS:
There is a need for further research focusing on spouses or relatives. Talking about worries and concerns regarding the new life situation may alleviate suffering and reduce uncertainty. Stoma nurses and other health professionals play an important role in the care of patients as well as spouses, and a greater insight into the worries and concerns affecting spouses is warranted to improve postoperative counseling and education.
- PMID: 23900653
- DOI: 10.1007/s00384-013-1749-y
- [Indexed for MEDLINE]
Full paper not available (to me).
Sexual (dys)function and the quality of sexual life in patients with colorectal cancer: a systematic review
M. J. Traa J. De VriesJ. A. Roukema B. L. Den Oudsten
Annals of Oncology, Volume 23, Issue 1, 1 January 2012, Pages 19–27, https://doi.org/10.1093/annonc/mdr133
Published: 20 April 2011
Abstract
Background:
To determine (i) the prevalence of sexual (dys)function in patients with colorectal cancer and (ii) treatment-related and sociodemographic aspects in relation to sexual (dys)function and the quality of sexual life. Recommendations for future studies are provided.
Methods:
A systematic search was conducted during the period 1990 to July 2010 that used the databases PubMed, PsychINFO, The Cochrane Library, EMBASE, and OVID Medline.
Results:
Eighty-two studies were included. The mean quality score was 7.2. The percentage of preoperatively potent men that experienced sexual dysfunction postoperatively varied from 5% to 88%. Approximately half of the women reported sexual dysfunction. Preoperative radiotherapy, a stoma, complications during or after surgery, and a higher age predicted more sexual dysfunction with a strong level of evidence. Type of surgery and a lower tumor location predicted more sexual dysfunction with a moderate level of evidence. Insufficient evidence existed for predictors of the quality of sexual life. Current studies mainly focus on biological aspects of sexual (dys)function. Furthermore, existing studies suffer from methodological shortcomings such as a cross-sectional design, a small sample size, and the use of nonstandardized measurements.
Conclusion:
Sexuality should be investigated prospectively from a biopsychosocial model, hereby including the quality of sexual life.
