From myth to biomedical reality using the example of kidney transplantation Program "Gender - Power - Knowledge", funded by the Lower Saxony Ministry of Science and Culture

 

Gender has a major influence on health (or illness) and consequently also on healthcare. The analysis of this complex subject area has a long tradition in women's and gender studies in the social and health sciences and has recently been strengthened with the establishment of gender-sensitive medicine.

 

Both perspectives complement each other; however, a synergy of the respective research approaches has only taken place in isolated cases to date. There is not only a need for action here, but also for theoretical-conceptual and methodological development, which this project aims to address using the example of transplantation medicine.

 

Based on the awareness that, in addition to pure medical expertise, erroneous assumptions ("myths") made by those treating women and men with regard to certain diseases have a strong influence on medical care, some of these myths were questioned in order to equalize the resulting gender inequality through improved diagnostics and therapy at a new, higher level. This innovative, interdisciplinary approach was tested using the example of kidney transplantation from an epidemiological, internal medicine, immunological and sociological perspective.

 

Institutes involved:

• Prof. Dr. Dr. Anette Melk, Clinical Department of Paediatric Kidney, Liver and Metabolic Diseases,
• Hannover Medical School
• Prof. Dr. Birgit Babitsch, New Public Health, Faculty 8 - Human Sciences, University of Osnabrück
• Prof. Dr. Christine S. Falk, Institute for Transplantation Immunology, Hannover Medical School
• Prof. Dr. Siegfried Geyer, Medical Sociology, Hannover Medical School
• Dr. Bärbel Miemietz, Equal Opportunities Office, Hannover Medical School
• PD Dr. Bernhard M.W. Schmidt, Clinical Department for Kidney and Hypertension Diseases, Hannover Medical School

 

The project was funded by the German Research Foundation and the Lower Saxony Cancer Society and was completed in summer 2015.

 

History

The study was started in 2002 as a cooperation between the Medical Sociology Department (Prof. Dr. Siegfried Geyer) and the Department of Psychosomatics and Psychotherapy (Prof. Dr. Dr. Mechthild Neises) of the MHH with the gynaecological Clinical Departments of the Henriettenstiftung, the Nordstadtkrankenhaus and the MHH. Funding for the first project period from the German Research Foundation ended in June 2005. The project was resumed at the end of 2007 in order to conduct an endpoint survey and carry out further evaluations. In 2014 and 2015, the project was funded by the Lower Saxony Cancer Society (Niedersächsische Krebsgesellschaft e.V.); the project ended in summer 2015. Our sincere thanks go to all sponsors, cooperation partners and especially the study participants!

Research questions

The project focuses on the question of whether acute and chronic social stress and disease-related coping behavior have an impact on the postoperative course of breast cancer. In particular, the connection between stressful life events and the occurrence of metastases and recurrences will be investigated and whether there is an increased disease-related mortality risk. Furthermore, the extent to which event-related problem solving and the presence of social support influence the course of the disease will be examined.

 

Former employees

Prof. Dr. Siegfried Geyer (project leader)

Prof. Dr. Dr. Mechthild Neises (project leader until 2009)

Dr. Dorothee Noeres

Heike Koch-Gießelmann

Alexandra von Garmissen

Jördis Grabow

Anja Herrenbrück

Tobias Michael (PhD)

Rafaela Hervatin (PhD)

Lisa Steinhilper (PhD)

Henning Brake (PhD)

Dr. Heike Saßmann

Barbara Bischofberger

Denise Klenner

Karin Block

Carola Schmidt

Ute Welke

 

Results and publications

Here are summaries of the results to date in reverse order of publication, followed by a list of published papers, lectures and poster presentations.

Long-term coping in women with breast cancer: How does it change after surgery and what impact does it have on health-related behavior?

Coping research assumes that active and approached coping is associated with better adaptation to illness. However, little research has investigated whether the way in which women cope with their illness is stable over time and whether better adaptation of breast cancer patients also postpones a possible relapse. In detail, this sub-project pursues four questions: 1) Do coping patterns of breast cancer patients differ immediately after surgery, one year later and again six years later? 2) Are there correlations between certain coping patterns and the postoperative course of the disease? 3) Do coping patterns have an impact on health-related lifestyles? 4) Do coping patterns have an impact on the likelihood of returning to work? The studies showed that the coping behavior of breast cancer patients varies significantly over the years. However, there were only a few correlations with health-related behavior, with returning to work or with the course of the disease. This results in relevant findings not only for basic research, but also points of reference for counseling in psycho-oncology. These studies were funded by the Lower Saxony Cancer Society and the report was presented in August 2015.

Are there links between health-related lifestyles and breast cancer recurrence?

This sub-study examines the changes in eating, exercise and smoking behavior over the course of six years and their influence on the course of breast cancer. The changes are compared with the current diet and exercise recommendations of the German Nutrition Society and a risk of recurrence is derived. The interview data of the 254 patients surveyed were analyzed at all three points in time, i.e. directly after the operation, one year later and six years later. Recurrences as endpoints (n=38) were collected at the end of the survey phase by various registries and the treating physicians. Results: Between the first and second measurement after one year, the health behavior of the respondents changed positively in the direction of the existing recommendations, but at the time of the third measurement (six years later), the health behavior was similar to that of the first measurement point. Only the consumption of bread decreased in the longer term, and physical activity behavior in the sense of more physical activity was also maintained at the third measurement point. There was no evidence of a correlation between health behavior in line with the recommendations and recurrence of the disease. These findings are part of a medical doctoral thesis that was submitted for publication in October 2013.

Health-related lifestyles in patients with breast cancer

The data from the first two data collection points were used to investigate whether a change in health-related lifestyles occurs in patients with breast cancer after surgery. From the first to the second time point, there was a consistent improvement in dietary patterns towards nutritional recommendations as published by the German Nutrition Society. Overall, the patients exercise more and nicotine consumption decreases significantly. The data on alcohol consumption does not appear to be sufficiently valid after a review, which is why it was not used. Although part of the guidelines for oncological rehabilitation, the lifestyle variables "diet" and "exercise" of participants in rehabilitation do not differ from those of non-participants. The improvements in these behaviors were generally observed in the patients, without any socio-demographic or medical predictors being found. However, there were correlations between smoking status and changes in daily fruit consumption. These findings were analyzed as part of a medical doctoral thesis.

dx.doi.org/10.1007/s00038-013-0444-7

Return to work after breast cancer: the long-term course over six years

This sub-study investigates two questions: (1) Does breast cancer cause working women to leave work more often in a period of one year or six years after their primary breast cancer operation? (2) Are there other factors that explain a prolonged or definitive absence from work after breast cancer? The data of 227 study participants aged between 18 and 64 years and, in comparison, an age-stratified sample of women without cancer from the Socio-Economic Panel (SOEP) from 2003, 2004 and 2009 were analyzed. Socio-demographic data and coded material from the qualitative interviews served as the basis for the analyses with SPSS. It was found that one year after the operation, three times as many female patients had left work than non-affected women. A lower level of education, part-time work, the severity of job-related difficulties and participation in rehabilitation correlated significantly with a failure to return to work. Six years after the operation, the probability of returning to work was half that of the control group. Now it was primarily age, tumor stage and the severity of the side effects of therapies that had an influence on the career decision. The comparative analysis also allowed conclusions to be drawn about the influence of work and pension policies on women's career decisions.

dx.doi.org/10.1007/s00520-013-1739-1

 

Rehabilitation

The data from the second survey date was used to investigate whether the utilization of inpatient oncological rehabilitation within one year after surgery shows social inequalities and which reasons lead to non-utilization. Data was available for 238 patients; of these, 150 (63.3%) took advantage of an inpatient rehabilitation measure. Women with a high school diploma tended to use the measure less frequently than women with a lower secondary or intermediate secondary school leaving certificate; a social gradient according to occupational position was not found. A strong predictor of utilization was chemotherapy as a follow-up treatment; among working patients, radiotherapy was associated with less frequent participation. Overall, the reasons for non-utilization of rehabilitation measures appear to be primarily individual in nature, as well as consistently motivated by the desire to avoid confrontation with the cancer and to resume an everyday life interrupted by illness.

 

Variability and stability in the coping behavior of breast cancer patients

This sub-project investigates whether the coping behavior of breast cancer patients changes over time or remains relatively stable. This research focuses on specific patterns in the coping processes and on possible predictors of coping variability. Overall, this survey evaluates the relevance of repeated measurements of forms of coping. Data from two series of interviews with 254 patients were used, one conducted directly after the operation and the other one year later and analyzed using the Hannover Coping Manual (HCM). The statistical evaluation - stability of coping and socio-demographic effects - was based on variance analyses with SPSS. It was found that the emotional coping reactions remained stable over time, while the cognitive reactions showed considerable variance. In addition, it was found that the strongest effects on coping behavior were due to chemotherapy. The study thus also indicates the high relevance of repeated measurements. The importance of social support in the coping process and the need for empowerment, particularly for chemotherapy recipients, are also reflected in the results.

dx.doi.org/10.1007/s00520-011-1334-2

 

Knowledge of self-help group members about breast cancer

Knowledge about breast cancer and the resulting perspectives promotes patients' satisfaction with their treatment and empowers them to participate in decisions about treatment and aftercare. With their knowledge and actions, they can contribute to their recovery process and quality of life. However, the level of information available to cancer patients in Germany is not consistently good. A number of studies have shown that many cancer patients in the German healthcare system still feel inadequately informed about their illness. At the same time, the participation rate in self-help groups is only three to six percent. As part of this and two earlier projects, a total of 727 breast cancer patients were questioned about their knowledge of breast cancer treatment and aftercare. In the survey, a distinction was made between 1. leaders of a self-help group, 2. participants in a self-help group and 3. non-participants. The evaluations show that a considerable knowledge potential is achieved in self-help groups. Participants in breast cancer self-help groups know more about breast cancer than non-participants, and the knowledge of the group leaders is even greater than that of the participants. Although involvement in self-help groups had the greatest influence on the level of knowledge of breast cancer patients in this survey, age and educational background also played a role, as did personal medical history.

dx.doi.org/10.3109/0167482X.2011.586077

 

Access routes to medical care and the quality of information

On the basis of the data from the first survey date, the ways in which patients were admitted to hospital with suspicious findings were examined. The typical access routes to hospital were gynecological or radiological practices; general practitioner care was not significant. The majority of patients were satisfied with the diagnostic process. Inconsistent information on the probable findings was viewed critically; women prefer to be told what they do not know rather than contradictory information. In 16% of patients, the diagnosis was not communicated in person but by telephone. This is a significantly higher proportion than in other European countries, but much lower than in the USA, where around a quarter of patients are informed of their diagnosis by telephone. These findings are part of a medical doctoral thesis that was published as a journal article.

dx.doi.org/10.1007/s00520-006-0195-6

 

Effects of stress

Data from the first survey date was used to investigate whether women who notice signs of breast cancer in themselves postpone the visit to the physician necessary for clarification due to acute stress. To date, only one study is available on this topic, in which the hypothesis was tested as to whether stress could lead to delayed utilization and thus, depending on the duration, result in a worsening of the prognosis (Burgess C, Ramirez AJ, Smith P, Richards MA. Do adverse life events and mood disorders influence delayed presentation of breast cancer? Journal of Psychosomatic Research 2000; 48:171-175). The data from our own study showed that the conditions described do not lead to delayed, but rather to earlier utilization. The stress experienced causes a higher level of attention and results in an earlier visit to the physician. In some cases, utilization was delayed, but not to an extent relevant to the prognosis.

dx.doi.org/10.1007/s00520-008-0492-3

 

Meaningful factors, religious values and coping with illness in women with breast cancer

What role do religiosity and the search for a deeper meaning of an illness play in coping with breast cancer? This question is rarely considered in studies on the coping behavior of patients. In the present project, the study participants were asked about this both by questionnaire and in a guided interview approximately five years after their breast cancer illness. For a large proportion of the women interviewed, a helpful coping strategy was to assign meaning to the illness. The disease - even and especially in its threatening nature - is usually interpreted from a responsibility-oriented perspective as an opportunity for personal development and a better way of life. This reveals a coexistence of traditional values, current forms of alternative spirituality and the use of complementary healing concepts as a contemporary expression of coping with illness in the context of religious meaning.

(Garmissen, A. v. 2009, "Sinnstiftende Faktoren, religiöse Werthaltungen und Krankheitsbewältigung bei Frauen mit Brustkrebs", Historical Social Research 34: 204-216).

 

Publications:

Geyer S, Koch-Gießelmann H., Noeres D. (2015). Coping with breast cancer and relapse: Stability of coping and long-term outcomes in an observational study over 10 years, Social Science and Medicine 135: 92-98.

Noeres, D. (2013). Coping with breast cancer using the example of acquiring disease-relevant knowledge and returning to work. Doctoral thesis. Hannover: Hannover Medical School. (this publication is

Steinhilper L, Geyer S, Sperlich S. (2013). Health behavior change among breast cancer patients. Int J Public Health, 58(4): 603-13.

dx.doi.org/10.1007/s00038-013-0444-7

Noeres D, Park-Simon TW, Grabow J, Sperlich S, Koch-Gießelmann H, Jaunzeme J, Geyer S (2013). Return to work after treatment for primary breast cancer over a six-year period: Results from a prospective study comparing patients with the general population. Supportive Care in Cancer, 21 (7): 1901-1909

dx.doi.org/10.1007/s00520-013-1739-1

Geyer S, Schlanstedt-Jahn U (2012). Are there social inequalities in the utilization of oncological rehabilitation in breast cancer patients? The health care system 74: 71-78.

dx.doi.org/10.1055/s-0030-1269840

Hervatin R, Sperlich S, Koch- Gießelmann H, & Geyer, S (2011). Variability and stability of coping in women with breast cancer. Supportive Care in Cancer, 20 (10): 2277-85. dx. doi.org/10.1007/s00520-011-1334-2

Noeres D, von Garmissen S, Neises M, Geyer S (2011). Differences in illness-related knowledge of breast cancer patients according to their involvement in self-help groups. Journal of Psychosomatic Obstetrics & Gynecology, 32 (3): 147-153

dx.doi.org/10.3109/0167482X.2011.586077

Geyer S, Schlanstedt-Jahn, U (2009). Integration of cancer registry data into a longitudinal study on life events in patients with breast cancer. The health care system, 71-A50

dx.doi.org/10.1055/s-0029-1239100

Garmissen A v (2009). Meaning-making factors, religious values and coping with illness in women with breast cancer. Historical Social Research 34: 204-216.

Bischofberger B, Mollova M, Geyer S, & Neises M (2009). Changes in women's partner relationships after breast cancer. Obstetrics and Gynecology 2009, 69: 1091-1096.

Geyer S, Ellis R, Koch- Giesselmann H (2009). The Hannover Coping Inventory: A qualitative method to investigate problem coping in women with breast cancer. In M Neises & K Weidner (Eds.), Qualitative research approaches and outcomes in psychosomatic gynecology, (pp. 169-189). Lengerich: Pabst Science Publishers.

Geyer S, Noeres D, Mollova M, Sassmann H, Prochnow A, Neises M (2008). Does the occurrence of adverse life events in patients with breast cancer lead to a change in illness behavior? Supportive Care in Cancer 16(12):1407-14

http://dx.doi.org/10.1007/s00520-008-0492-3

Brake H, Sassmann H, Noeres D, Neises M, Geyer S. (2007). Ways to a breast cancer diagnosis, consistency of received information, patient satisfaction, and the presence of close others. Supportive Care Cancer, 15 (7): 841-848.

 

Lectures

Noeres D, von Garmissen A, Neises M. Geyer S. Return to work after breast cancer: The long-term course after six years.

(Congress ISPOG 2013, Berlin)

Noeres D, Grabow J, Koch-Gießelmann H, Geyer S. Elderly women after breast cancer diagnosis: Factors affecting their decision (not) to return to work.

(Congress DGMS/ESHMS, Hanover 2012)

Geyer S, Neises M. Coping after breast cancer: First results of a longitudinal study.

(Congress ISPOG 2010)

Noeres D, von Garmissen A, Neises M. Geyer S. Breast Cancer Knowledge in Self-Help Groups.

(Congress ESHMS 2010, Ghent)

Noeres D, Prochnow A, Geyer S. How much do members of self-help groups know about breast cancer?

(Congress DGMS/DGSMP 2009, Hamburg)

Ellis R, Geyer S, Sperlich S. Variability and stability of coping behavior in women with breast cancer.

(Conference DGMS/DGSMP 2009, Hamburg)

Koch-Gießelmann H, Geyer S. The German version of the Bedford College Coping Inventory: A synthesis of qualitative and quantitative methodology for the assessment of coping behavior.

(Congress Medicine and Society 2007)

Koch-Gießelmann H, Geyer S. A German Version of the Bedford College Coping Inventory. A synthesis of qualitative and quantitative methodology.

(Congress ESHMS 2006, Krakow)

 

Poster

Religious values and meaningful concepts in coping with illness in women with breast cancer. von Garmissen A.

(Congress of the German Association for Religious Studies 2009)

The German version of the Bedford College Coping Inventory: A synthesis of qualitative and quantitative methodology for the assessment of coping behavior Koch-Gießelmann H., Geyer S.

(Congress Medicine and Society 2007)

The influence of life-changing events on the course of breast cancer. Saßmann H, Bischofberger B, Block K, Neises M, Noeres D, Schmidt C, Welke U, Geyer S.

(Conference DKPM 2005)

Coping with illness and social support in the course of breast cancer. Bischofberger B, Saßmann H, Block K, Geyer S, Noeres D, Schmidt C, Welke U, Neises M.

(DGPFG Congress 2005)

Project team members

Prof. Dr. G. Fischer was responsible for the project and Prof. Dr. Siegfried Geyer was the scientific director. The project began in December 2001 and was completed in June 2004.

The project was carried out by Heike Koch-Giesselmann and Dr. Maren Dreier

 

Introduction

The project was funded by the NFFG (Norddeutscher Forschungsverbund für Frauen-/Geschlechterforschung in Naturwissenschaften, Technik und Medizin) since 2002 and was completed in June 2004. The project focused on a typical female fate in old age, the loss of a partner. Women are affected by this critical life event 4-5 times more frequently than men. The results of research into old age indicate that the death of a long-term partner not only has an impact on mental health, but can also lead to new illnesses and an increased mortality rate.

 

The central question of the project related to changes in the health status of women over the age of 70 and the use of medical services after the death of a partner and whether this can be attributed to a deterioration in morbidity status.

 

The results were expected to provide information on how the general medical care of widowed people in old age can be optimized. Due to demographic change, the life constellations investigated are increasing, and geriatric concerns will play an ever greater role in medical care and apply to an increasing number of patients.

In addition, the results of the study should contribute to the further development of theoretical findings on life events and illness. In particular, this concerns the question of whether stressful events have specific or non-specific health consequences, which has not been adequately addressed to date.

 

The following questions will be investigated

• Comparison of mental, psychological and functional health, quality of life, health behavior and use of health services in widowed and married women over the course of a year
• Do widowed women have different coping strategies and do these have an impact on health parameters?
• Does the context of the partner's death (e.g. care situation, institutionalization, sudden and unexpected death) have an impact on coping and health parameters?
• What influence do stressful life events and chronic difficulties have on the health of older women?

 

Study design

In a case-control design, widowed women over the age of 70 and women who had been married for more than five years were interviewed at home at two measurement points. The initial survey was conducted with the widowed women 2-5 months after the death of their partner, the follow-up survey one year after the death of their partner. The married control persons were interviewed at one-year intervals. The approximately 90-minute interview was conducted using qualitative and quantitative survey methods.

The severity of the partner's death, other life-changing events retrospectively one year later and coping behavior were recorded using a guided interview; the classifications were carried out using the Life Event and Difficulties Schedule (LEDS) and the Bedford College Coping Inventory. Both methods are based on the standardized evaluation of qualitative interviews.

Standardized instruments were used to assess mental and psychological health, functional status, subjective health-related quality of life, health behavior and sociodemographics. The Mini Mental State Examination (MMSE) was used as a screening instrument to detect cognitive impairments. Health-related quality of life was measured with the SF-12 in its interview form for a time window of four weeks before the survey.

The Geriatric Depression Scale (GDS-15) was used to record depressive symptoms in elderly people.

The impairment of functional health or the ability to cope with everyday tasks was measured with the Activities of Daily Living/ Instrumental Activities of Daily Living (ADL/IADL). The CAGE questionnaire was used to screen for the presence of alcohol dependence in older people. A separate questionnaire was used to collect data on health-related behavior, medication use and eating habits.

In addition, information on the use of medical services and on chronic illnesses and new illnesses was obtained by means of a standardized patient-related survey of general practitioners over the entire survey period. In the widowed group, the GPs were also asked about grief-related interventions.

 

Summary of the results

The participants were on average 76 years old and had been married for an average of 48 years. For 18 widowed women (P1), the severity of partner death was rated as very high, for the remaining 27 (P2) as less high. The severity of partner death was classified according to the predictability of the event and the quality of the partnership using the LEDS evaluation manuals.

The case and control groups did not differ in terms of physical quality of life and functional and mental state at the time of the initial survey. The cases showed a worse mental state, with a more severe loss (P1) tending to be associated with a less favorable mental state. One third of the widowed were treated with psychotropic drugs by the general practitioners as part of the grief-specific measures, and the proportion of severely affected women (P1) was twice as high.

With increasingly poorer mental health, coping behavior after partner death was characterized by helplessness, low mastery, little control and hope, as well as feelings of guilt, sadness and anger.

There were no significant differences in coping behavior within the case group, except for the positive assessment of the event.

If the event was less severe (P2), i.e. more predictable, and/or impaired the quality of the partnership, positive aspects could also be attributed to the death of the partner; this group also tended to be less helpless and sad, but suffered more from feelings of guilt.

 

This was a cooperation project between the German ILCO e .V. and the Department of Medical Sociology at Hannover Medical School. The project was funded by the Federal Association of BKK. The project period was August 2003 to February 2005.

 

Aim of the study

As part of this study, we collected data on the current care situation of stoma patients in the outpatient sector by means of a nationwide postal survey.

In order to be able to assess the background against which patients turn to the various outpatient Facilities or Institutions, the first step was to determine the level of information available to patients at the time of discharge. Based on the quality of advice and preparation for living with a stoma, the quality of outpatient care was examined in more detail in the next step. The experiences with professional service providers in regular aftercare and in the event of medical complications were of central importance to the topic. Detailed information was collected on the complications that occurred and the form and quality of assistance provided by the various players in the healthcare system. Occupational difficulties and problems in the social environment, including coping with them, were another area to be investigated. Last but not least, habits in dealing with ostomy articles and the associated difficulties and their solutions were also addressed.

 

Central questions of the study

• What is the quality of the information and counseling services provided by the participating Clinical Departments?

• How are medical/technical problems with care resolved?

• How satisfied are patients with the help they receive when problems arise?

 

In addition to taking stock of the situation from the point of view of those affected, this study should also provide indications of how the outpatient care of stoma patients can be improved.

 

The study participants

Of the 1163 members of the German ILCO who were contacted, 938 thankfully returned their completed questionnaires. Of these, 44% were women and 56% men. The youngest participant in the study was 21 years old, while the two oldest people were already 91 years old (the average age was 64). Exactly two-thirds of those we surveyed were already retired, while only 14% were still working. Cancer is the most common cause of stoma formation. In almost two thirds of cases, it was colorectal cancer, while just under 12% of respondents had received their stoma due to bladder cancer.

 

Results

Information provided in the Clinical Departments

We gave the stoma wearers various pieces of information and asked them which of these they had received. We wanted to gain an impression of the level of information with which the patients were discharged and prepared for life with a stoma.

The topic of 'handling stoma care' was the most important of the topics we asked about and was explained to almost all respondents (91%). Furthermore, 84% of the ostomates surveyed named contact persons to whom they could turn if they had problems with the handling of their ostomy appliance. In contrast, only three quarters of respondents stated that they had been informed about possible contacts for medical problems.

Information about various manufacturers, products and possible sources of supply reached over 70% of respondents (although in most cases only one product and one way of purchasing this product was mentioned: most stoma wearers do not even know that they can obtain their ostomy products independently). 60% of the written respondents had been informed about the existence of ILCO.

However, only slightly more than one in two respondents stated that they had received social legal advice on the topics of severe disability, health insurance, etc. during their stay in hospital. Those affected who also underwent rehabilitation after the operation received significantly more information than those who did not stay in a rehabilitation Clinical Department.

 

Satisfaction with information and advice

Satisfaction with the advisory service is generally high: in the acute Clinical Department, a good 60% are satisfied to very satisfied, while satisfaction with the rehabilitation clinic is significantly higher (just under 70% are satisfied to very satisfied).

Despite the high level of satisfaction with the information and advice provided in the Clinical Departments, the need does not appear to be met. Almost 93% of all respondents stated that even without acute problems after discharge, they sought further information on their own - from the ILCO, outpatient stoma therapists or by independently researching books, brochures or attending lectures.

 

Technical difficulties and material problems

Various possible answers were also given for this question. Overall, 72% of stoma patients had experienced difficulties with their care at least once in the first year.

The most frequently mentioned problems related to the lack of adhesion of the appliance. More than half of the respondents had a problem with leakage due to infiltration in the first year. In second and third place, signs of detachment due to body folds or scars on the stoma or moisture (e.g. sweat) were mentioned.

In contrast, the products and materials themselves are unproblematic: defective welded seams or adhesive surfaces hardly play a role; and only 5% stated that they found the handling of their appliance cumbersome.

 

Assistance with tech. Difficulties/ material problems

It became clear that women and men with stomas are able to help themselves with material-related problems. "You have to work it out for yourself." (Quote from Mr. M.). There are no universal tips for overcoming these difficulties. Just as everyone has to find out for themselves which product from which company is best for them, everyone has to find out for themselves how best to solve practical problems with care. Stoma therapists are mentioned in second place. They are asked for alternative product suggestions, especially in the case of leaks and inadequate adhesion of the care system.

 

General stress immediately after the operation

The creation of a stoma is a profound incision in the lives of those affected. More than half of the stoma wearers felt "very" to "extremely" burdened by the stoma immediately after the operation. A further 28% stated a "moderate" burden and only 4% felt "not at all" burdened.

With regard to the various underlying diseases, it can be stated that patients with a chronic inflammatory bowel disease (Crohn's disease/ulcerative colitis) felt less burdened by the stoma immediately after the operation than cancer patients. On the one hand, this can be explained by the fact that cancer patients also have to deal with the diagnosis of cancer. Another reason is that Crohn's/colitis patients are prepared for the fact that they may need an ostomy at some point in their lives.

In addition, a stoma often improves the quality of life for these patients: "I haven't gone for a walk on the beach for the last ten years because I was afraid I wouldn't be able to keep it in. [...] I walked through the forest two weeks after the operation and was just happy that I didn't care where the nearest toilet was!" (Quote from Mrs. R).

 

Impairment in everyday life

Maintaining contact with friends and acquaintances was the least problematic for the interviewees, even with a stoma. Their self-confidence and the associated positive view of their own naked body also suffered comparatively little. On the other hand, performing practical tasks and pursuing various hobbies caused greater problems - including serious problems at work (if still present).

However, the greatest impairment is seen in the sexual relationship with the partner. Mrs. Z describes the initial insecurity very vividly: "You have to get used to it. In the beginning, when my husband stroked me and came close to the bag, I always thought: 'Ooops, what's happening here? But that's only for a short time [...]!"

 

Has your body perception / self-image changed?

The personal interviewees responded to this topic in very different ways. In some cases, this question about changes in self-image was commented on with humor and refreshing sarcasm: "My motto: Once your body is ruined, you can live a carefree life!" (Quote from Ms. X).

 

Problems in the social environment

Only 7% (N=66) of the written respondents stated that they had experienced difficulties in their social environment as a result of the stoma. Almost all problems can be described as a form of distancing: in almost a quarter of cases, acquaintances break off contact, followed in second place by friends who have withdrawn or uncomprehending family members.

A common problem is uncontrollable flatulence and bowel noises. However, no one can remember a really unpleasant situation in this context. A popular strategy for the waiting room or elevator: put on an unconcerned face and look around for the culprit...

 

"Who helped you deal with the new situation?"

In most cases, the family is mentioned at this point. First and foremost the (spouses) partners. The wife of one stoma patient interviewed described her support with the following words: "He wasn't hungry and I tempted him, I brought ice cream - and cake!"

Some women have made friends with their stoma in a special way and are in constant dialog: "My stoma has a name: My little bugger! And I always tell him: You can do whatever you want, but only when I'm back home. You have to make friends!" Quote from Mrs. Y). Mrs. X even chose different names depending on her satisfaction with the facility: "Hugo ruled my life [...]. Hugo was the boss, he told me what to do. Paula doesn't cause any trouble. Then I say: "Paula needs a new dress!" It's a bit of fun!"

 

Old and new federal states

The analysis of the differences between East and West Germany revealed a clear result: there are none. There are no differences between the old and new federal states in terms of counseling services, outpatient care or assistance with problems. Satisfaction with care is the same and the perception of stress is also uniform.