Permanent personalized cancer patient advocacy program EASE: 10 years of experience
Sergejs Kuznecovs
Cancer Patient Advocacy Bureau "Veselibas Laboratorija", Riga, Latvia
There are leastwise three main problems faced by cancer survivors in Latvia, which are in focus of cancer patient advocacy.
1. CANCER SURVIVOR WORKING LIFE "Return to work" is an important part of psychosocial rehabilitation of cancer patients. On the other hand "working life" is a great stress factor . Findings reveal that 54% of persons (9970) with relapse in cancer treatment and recurrence of the disease perceived themselves as victims of "working life". 81,%5 of victims were females. All victims were diagnosed with recurrence of cancer within the period from 2,6 months to 1,2 years after victimization due to overload and bulling and harassment (B&H) at work. The main form of cancer in victims-females is breast cancer (76,4%) and ovarian cancer (21,5%), in victims-males prostate cancer (62,6%) and brain tumors (36,2%). Emotional distress can promote a recurrence of the disease in cancer survivors who are working. B&H at working place due to overload, maybe one the single greatest cause of emotion distress which can promote a relapse in cancer treatment and recurrence of disease. To work or not to work? This is the vital question for cancer survivors and cancer patient advocates.
2. RELATIONSHIP AND SEXUALITY It was found that one of the most commonly occuring secondary sexual symptom among women and men is fatigue (92,7%). Fatigue greatly interferes with sexual desire and physical ability to initiate and sustain sexual activity. The physical changes can also negatively affect body image. 76% of women might have difficulty feeling physically appealing or "sexy". Some of them (49%) may fear they are no longer sexually desirable to their partner. Additional problems may occur in the relationship when the partner assumes the role of caretaker (15,4%). Now it is possible to develop the personalized program for psychosocial support to best accommodate sexual needs and relationship.
3. SUICIDE ATTEMPTS PREVENTION IN CANCER Latvia is on the leaders in the world among countries with the highest level of suicides and suicide attempts among cancer patients. Findings reveal that subjects received little amount of affect (love, respect, admiration) and very little amounts of affirmation (support of one's thoughts or action) and tangible aid. Recognition and treatment of depression and pain are important but not main for suicide attempt prevention in cancer. Spousal caregivers and family are able to play the leading role in suicide attempt prevention. "EASE"
Ten years ago we have evaluated the permanent personalized program for the needs of cancer patients "EASE": (E)Education disease course, treatment options side effects, patient and family implications. (A)Adaptation: adjusting to physical changes; setting priorities and conserving energy; incorporating self care and healthcare activities into activities of daily living.(S) Support: counseling for the patient and family; affiliating with support groups; obtaining needed entitlements.(E)Enhancement: enhancement of self-care skills, facilitation of communication about needs and concerns. It means that now we fight against poor social support, socioeconomic pressure, poorly controlled pain, malnutrition, depression, social isolation, bulling and harassment at work Because this is the another face of cancer. CANCER PATIENT ADVOCACY BUREAU "VESELIBAS LABORATORIJA" in Riga, Latvia is open for all cancer patients in the world looking for EASE.
Cancer Patient Advocacy Bureau "Veselibas Laboratorija", Riga, Latvia
There are leastwise three main problems faced by cancer survivors in Latvia, which are in focus of cancer patient advocacy.
1. CANCER SURVIVOR WORKING LIFE "Return to work" is an important part of psychosocial rehabilitation of cancer patients. On the other hand "working life" is a great stress factor . Findings reveal that 54% of persons (9970) with relapse in cancer treatment and recurrence of the disease perceived themselves as victims of "working life". 81,%5 of victims were females. All victims were diagnosed with recurrence of cancer within the period from 2,6 months to 1,2 years after victimization due to overload and bulling and harassment (B&H) at work. The main form of cancer in victims-females is breast cancer (76,4%) and ovarian cancer (21,5%), in victims-males prostate cancer (62,6%) and brain tumors (36,2%). Emotional distress can promote a recurrence of the disease in cancer survivors who are working. B&H at working place due to overload, maybe one the single greatest cause of emotion distress which can promote a relapse in cancer treatment and recurrence of disease. To work or not to work? This is the vital question for cancer survivors and cancer patient advocates.
2. RELATIONSHIP AND SEXUALITY It was found that one of the most commonly occuring secondary sexual symptom among women and men is fatigue (92,7%). Fatigue greatly interferes with sexual desire and physical ability to initiate and sustain sexual activity. The physical changes can also negatively affect body image. 76% of women might have difficulty feeling physically appealing or "sexy". Some of them (49%) may fear they are no longer sexually desirable to their partner. Additional problems may occur in the relationship when the partner assumes the role of caretaker (15,4%). Now it is possible to develop the personalized program for psychosocial support to best accommodate sexual needs and relationship.
3. SUICIDE ATTEMPTS PREVENTION IN CANCER Latvia is on the leaders in the world among countries with the highest level of suicides and suicide attempts among cancer patients. Findings reveal that subjects received little amount of affect (love, respect, admiration) and very little amounts of affirmation (support of one's thoughts or action) and tangible aid. Recognition and treatment of depression and pain are important but not main for suicide attempt prevention in cancer. Spousal caregivers and family are able to play the leading role in suicide attempt prevention. "EASE"
Ten years ago we have evaluated the permanent personalized program for the needs of cancer patients "EASE": (E)Education disease course, treatment options side effects, patient and family implications. (A)Adaptation: adjusting to physical changes; setting priorities and conserving energy; incorporating self care and healthcare activities into activities of daily living.(S) Support: counseling for the patient and family; affiliating with support groups; obtaining needed entitlements.(E)Enhancement: enhancement of self-care skills, facilitation of communication about needs and concerns. It means that now we fight against poor social support, socioeconomic pressure, poorly controlled pain, malnutrition, depression, social isolation, bulling and harassment at work Because this is the another face of cancer. CANCER PATIENT ADVOCACY BUREAU "VESELIBAS LABORATORIJA" in Riga, Latvia is open for all cancer patients in the world looking for EASE.