Benefits of a non-pharmacological treatment group program in coping with cancer in Spanish women. A qualitative synthesis

Francisco-Xabier Aguiar Fernández Margarita Pino-Juste José Javier Navarro Pérez About the authors

Resumen

En el presente trabajo se analizan los beneficios de un programa grupal de tratamiento no farmacológico realizado por la Asociación Española contra el Cáncer en Galicia (España). Se analizaron 14 ediciones del programa en las que participaron 361 mujeres con cáncer de edades comprendidas entre los 33 y los 82 años. Se adoptó un diseño descriptivo de carácter etnográfico triangulando las técnicas de análisis y las fuentes de recogida de datos por medio de un cuestionario de satisfacción, 32 entrevistas en profundidad y un grupo de discusión con profesionales. Los resultados apoyan la idea de que el programa grupal analizado ha conseguido un elevado grado de satisfacción entre las mujeres participantes en todas las ediciones, ha favorecido la aceptación y el afrontamiento positivo de la enfermedad, aumentado los conocimientos y las habilidades para resolver los problemas relacionados con el proceso, así como promovido las relaciones sociales, la participación en la comunidad y el apoyo social. Desde el punto de vista práctico y profesional, nuestro estudio evidencia la importancia de diseñar e implementar programas grupales desde el ámbito psicosocial y con carácter interdisciplinar que permitan mejorar las estrategias de afrontamiento y el apoyo en poblaciones de mujeres diagnosticadas de cáncer.

Palabras clave:
Cáncer; Mujer; Programa Grupal; Tratamiento no Farmacológico; Beneficios

Abstract

The study aims to determine the benefits of a non-pharmacological treatment and communitarian program carried out by the Spanish Association against Cancer in Galicia (Spain). The total of 14 editions of the program were analyzed in which 361 women with cancer between the ages of 32 and 84 participated. A descriptive ethnographic design was adopted, triangulating the analysis techniques and data collection sources using a satisfaction questionnaire, 32 in-depth interviews and a discussion group with professionals. The results support the idea that the group program analyzed has achieved a high degree of satisfaction among women participating in all editions, has favored the acceptance and positive coping with disease, increased knowledge and skills to solve related problems with the process, as well as promoted social relations, participation in the community and social support. From the practical and professional point of view, our research shows the importance of designing and implementing group programs from the psychosocial and interdisciplinary field that allow improving coping strategies and support in populations of women diagnosed with cancer.

Keywords:
Cancer; Woman; Group Program; Non-Pharmacological Treatment; Benefits

Introduction

Cancer is one of the diseases with the greatest morbidity and mortality in women worldwide, with breast cancer having the highest incidence in Spain. Nowadays it tends to become chronic, so multidisciplinary approaches are needed, in addition to biological aspects, including psychological and social aspects, both at the time of diagnosis and treatment, and in the return to daily life. The oncological diagnosis is often accompanied by difficulties in accepting the illness, low mood, depression, fears, anguish in the face of the unknown and feelings of loss (Cruzado, 2013CRUZADO, J. A. Manual de psicooncologia. Madri: Pirámide, 2013.; Fischer; Wedel, 2012FISCHER, D.; Wedel, B. Anxiety and depression disorders in cancer patients: incidence, diagnosis and therapy. Memo-Magazine of European Medical Oncology, Viena, v. 5, n. 1, p. 52-54, 2012.; Yélamos et al., 2007YÉLAMOS, C. et al. “Mucho x Vivir”. Atención psicosocial para mujeres con cáncer de mama. Psicooncología, Madri, v. 4, n. 2, 3, p. 417-422, 2007.). The patients’ symptom experiences do not occur in isolation and must be addressed holistically in their life context (Bennion; Molassiotis, 2013BENNION, A. E.; Molassiotis, A. Qualitative research into the symptom experiences of adult cancer patients after treatments: a systematic review and meta-synthesis. Supportative Care Cancer, Berlim, v. 21, n. 1, p. 9-25, 2013.).

In fact, some authors point out that if emotional distress or discomfort during the course of the disease is not detected and treated at the earliest stage of the disease, it has a potential negative effect on morbidity and mortality, chronification, quality of life and adherence and/or duration of medical treatment (Cruzado, 2013CRUZADO, J. A. Manual de psicooncologia. Madri: Pirámide, 2013.; Holland; Watson; Dunn, 2011HOLLAND, J.; Watson, M.; Dunn, J. The IPOS new International Standard of Quality Cancer Care: integrating the psychosocial domain into routine care. Psycho-Oncology, Hoboken, v. 20, n. 7, p. 677-80, 2011.). Common psychosocial risk factors include passive coping skills, poor social support, early age, avoidance of thoughts related to the illness, and a previous history of psychological problems (Cardenal et al., 2012CARDENAL, V. et al. Personality, emotions and coping styles: predictive value for the evolution of cancer patients. The Spanish journal of psychology, Madri, v. 15, n. 2, p. 756-67, 2012.; Fischer; Wedel, 2012FISCHER, D.; Wedel, B. Anxiety and depression disorders in cancer patients: incidence, diagnosis and therapy. Memo-Magazine of European Medical Oncology, Viena, v. 5, n. 1, p. 52-54, 2012.; Rodríguez et al., 2007RODRÍGUEZ, B. et al. Adaptación individual y depresión en una muestra de pacientes oncológicos. Psicooncología, Madri, v. 1, n. 4, p. 7-19, 2007.; Schnoll; Knowles; Harlow, 2002SCHNOLL, R. A.; Knowles, J. C.; Harlow, L. Correlates of adjustment among cancer survivors. Journal of Psychosocial Oncology, Filadélfia, v. 8, n. 20, p. 37-59, 2002.; Schroevers; Kraaij; Garnefski, 2011SCHROEVERS, M. J.; Kraaij, V.; Garnefski, N. Cancer patients’ experience of positive and negative changes due to the illness: relationships with psychological well-being, coping, and goal reengagement. Psycho-Oncology, Hoboken, v. 20, n. 2, p. 165-172, 2011.). In contrast, positive emotions and more active coping styles are associated with better adaptation to the disease situation (Algoe; Stanton, 2012ALGOE, S. B.; Stanton, A. L. Gratitude when it is needed most: Social functions of gratitude in women with metastatic breast cancer. Emotion, Worcester, v. 12, n. 1, p. 163-168, 2012.; Schnoll; Knowles; Harlow, 2002).

Empirical studies about the effectiveness of psychosocial interventions in people with a medical diagnosis of cancer are still insufficient. Many studies indicate that people diagnosed with cancer who participate in group interventions have benefits especially related to affective and emotional state (Beatty et al., 2018BEATTY, L. et al. A systematic review of psychotherapeutic interventions for women with metastatic breast cancer: Context matters. Psycho-Oncology, Hoboken, n. 27, n. 1, p. 34-42, 2018.; Campbell; Phaneuf; Deane, 2004CAMPBELL, H. S.; Phaneuf, M. R.; Deane, K. Cancer peer support programs-do they work? Patient Education and Counselling, Amsterdã, v. 55, n. 1, p. 3-15, 2004.; Giese-Davis et al., 2006GIESE-DAVIS, J. et al. Emotion al expression and diurnal cortisol slope in women with metastatic breast cancer in supportive-expressive group therapy: a preliminary study. Biological psychology, Amsterdã, v. 73, n. 2, p. 190-198, 2006.; Grégoire et al., 2017GRÉGOIRE, C. et al. Group interventions to reduce emotional distress and fatigue in breast cancer patients: a 9-month follow-up pragmatic trial. British Journal of Cancer, Londres, n. 117, n. 10, p. 1442-1449, 2017.; Hoey et al., 2008HOEY, L. M. et al. Systematic review of peer-support programs for people with cancer. Patient Education and Counselling, Amsterdã, v. 70, n. 3, p. 315-37, 2008.; Iancu et al., 2017IANCU, M. et al. The effect of psychological group intervention on emotional problems, event impact and quality of life in breast cancer patients under radiotherapy: a pilot study. Journal of Evidence-Based Psychotherapies, Cluj-Napoca, v. 17, n. 2, p. 133-146, 2017.; Stevinson; Lydon; Amir, 2011STEVINSON, C.; Lydon, A.; Amir, Z. Cancer support group participation in the United Kingdom: a national survey. Supportative Care Cancer, Berlim, v. 19, n. 5, p. 675-683, 2011.); the reduction of depression and anxiety (Cameron et al., 2007CAMERON, L. D. et al. Changes in emotion regulation and psychological adjustment following use of a group psychosocial support program for women recently diagnosed with breast cancer. Psycho-Oncology, Hoboken, v. 16, n. 3, p. 171-180, 2007.; Cohen; Fried, 2007COHEN, M.; Fried, G. Comparing relaxation training and cognitive-behavioral group therapy for women with breast cancer. Research on Social Work Practice, Thousand Oaks, v. 17, n. 3, p. 313-323, 2007.; Merckaert et al., 2017MERCKAERT, I. et al. Improving anxiety regulation in patients with breast cancer at the beginning of the survivorship period: a randomized clinical trial comparing the benefits of single-component and multiple-component group interventions. Psycho-Oncology, Hoboken, n. 26, n. 8, p. 1147-1154, 2017.); the improvement of body image and self-esteem (Esplen et al., 2018ESPLEN, M. J. et al. Restoring body image after cancer (ReBIC): results of a randomized controlled trial. Journal of Clinical Oncology, Alexandria, n. 36, n. 8, p. 749-756, 2018.; Lewis-Smith et al., 2018LEWIS-SMITH, H. et al. Efficacy of psychosocial and physical activity-based interventions to improve body imageamong women treated for breast cancer: a systematic review. Psycho-Oncology, Hoboken, v. 27, n. 12, p. 2687-2699, 2018.); the acquisition of learning and strategies for self-care and improved coping (Adams et al., 2019ADAMS, L. et al. Effectiveness of a motivational-volitional group intervention to increase physical activity among breast cancer survivors compared to standard medical rehabilitation-Study protocol of a prospective controlled bi-centred interventional trial. European Journal of Cancer Care, Hoboken, n. 28, n. 4, p. e13073, 2019.; Novakov et al., 2019NOVAKOV, I. et al. Empirical validation of the integrative psychological group intervention for women with breast cancer - preliminary results. Vojnosanitetski Pregled, Belgrado, v. 76, n. 10, p. 1022-1028, 2019.; Ramos et al., 2018RAMOS, C. et al. The effectiveness of a group intervention to facilitate posttraumatic growth among women with breast cancer. Psych-Oncology, Hoboken, n.27, p. 258-264, 2018.; Weis et al., 2020WEIS, J. B. et al. Psychoeducational group intervention for breast cancer survivors: a non-randomized multi-center pilot study. Supportive Care in Cancer, Berlim, v. 28, n. 7, p. 3033-3040, 2020.) or the improvement of general well-being and quality of life (Beatty et al., 2019; Grégoire et al., 2017GRÉGOIRE, C. et al. Group interventions to reduce emotional distress and fatigue in breast cancer patients: a 9-month follow-up pragmatic trial. British Journal of Cancer, Londres, n. 117, n. 10, p. 1442-1449, 2017.; Lieberman; Goldstein, 2006LIEBERMAN, M. A.; Goldstein, B. A. Not all negative emotions are equal: the role of emotional expression in online support groups for women with breast cancer. Psycho-Oncology, Hoboken, v. 15, n. 2, p. 160-168, 2006.; Santos; Souza, 2019SANTOS, M. A.; SOUZA, C. Group interventions for women with breast cancer: Challenges and possibilities. Psicologia: Teoria e Pesquisa, Brasília, DF, v. 35, p. e5410, 2019.). These people report improvements in areas such as emotional functioning, coping strategies, knowledge about cancer and its treatments, personal relationships, and quality of life. On the other hand, groups allow the exchange of information, and this is one of the most important components for adequate support and care (Fletcher et al. 2017FLETCHER, C. et al. The information needs of adult cancer survivors across the cancer continuum: A scoping review. Patient Education and Counselling, Amsterdã, v. 100, n. 3, p. 383-410, 2017.; Turner et al. 2005TURNER, J. et al. Clinical practice guidelines for the psychosocial care of adults with cancer. Psycho-Oncology, Hoboken, v. 14, n. 3, p. 159-173, 2005.). Adequate information has benefits related to greater involvement in decisions, greater adherence to treatments, and less anxiety (D’haese et al., 2000D’HAESE, S. et al. The effect of timing of the provision of information on anxiety and satisfaction of cancer patients receiving radiotherapy. Journal Cancer Education, Thousand Oaks, v. 15, n. 4, p. 223-227, 2000.; Husson; Mols; van de Poll-Franse, 2011HUSSON, O.; Mols, F.; Van de Poll-Franse, L.V. The relation between information provision and health-related quality of life, anxiety and depression among cancer survivors: a systematic review. Annals of Oncology, Boston, v. 22, n. 4, p. 761-72, 2011.).

The overall objective of this study is to evaluate the benefits of a non-pharmacological treatment group program with women who had breast cancer surgery including an interdisciplinary professional intervention. The program was carried out by the Spanish Association against Cancer (AECC), in the autonomous community of Galicia (Spain), between 2004 and 2016, and is coordinated by the Department of Social Work of this entity. Specifically, this article analyzes the participants’ satisfaction with the design and contents of the program -the coexistence and relationship with the group and the perceived benefits in relation to acceptance, state of mind and coping with the disease; the acquisition of knowledge and learning; social relations; social support and participation in the community.

Brief description of the program

The program consists of a four-day group living experience. Its objective is that women diagnosed with cancer can interact and share experiences, solve their doubts, especially those of a social and health nature, and discover new possibilities for personal care and relationships with others. It takes place in a center located in a natural environment that invites to rest and recover strength in contact with nature and that combines the necessary facilities and resources for accommodation, food and the development of activities.

It is a program in which an average of 25 women participate and includes 11 to 12 group sessions of one and a half hours. The contents address issues of coping with illness, treatment, side effects and rehabilitation, self-care, nutrition, self-esteem and body image, sexuality, communication and social skills, and the search for well-being through relaxation, yoga, body expression or physical activity. Three social work professionals coordinate the program, but for its development, there were an interdisciplinary team of professionals specialized in each of the topics (medical oncology, psycho-oncology, social work, social education, nursing, nutritionist and occupational therapists). The program is interspersed with free time spaces when participants can talk, walk around the gardens, rest or promote other activities spontaneously. The participants are selected by professionals of the organizing entity (psychologists and social workers), by a previous interview, considering their clinical and psychosocial situation, availability and interest in the program. They can come on their own initiative or be referred from other services of the same entity or from the health and social services that works in close collaboration with the program. During the following six months, two to three informal follow-up meetings are organized and participants have at least one evaluation interview with a social worker and a psychologist from the entity.

Table 1
Basic structure and contents of the program in the period analyzed from 2004 to 2016

Methodology

The case study was approached from a critical perspective with a descriptive longitudinal design using qualitative cutting tools (Chittem 2014CHITTEM, M. Understanding coping with cancer: How can qualitative research help? Journal of Cancer Research and Therapeutics, Nova Deli, v. 10, n. 1, p. 6-10, 2014.; Stake, 1998STAKE, R. E. Investigación con estudio de casos. Madri: Ed. Morata, 1998.; Yacuzzi, 2005YACUZZI, E. El estudio de caso como metodología de investigación: teoría, mecanismos causales, validación. Buenos Aires: Universidad del CEMA, 2005. (Serie Documentos de Trabajo, n. 296). Disponível em: <Disponível em: https://bit.ly/2AfG0Wt >. Acesso em: 11 jun. 2020.
https://bit.ly/2AfG0Wt...
). This approach allows us to address the triangulation of techniques and data collection sources in order to contrast the information collected and avoid possible distortions in the interpretation of facts by considering that each woman has her own particular way of understanding and interpreting reality (Taylor; Bogdan; Devault, 2015TAYLOR, S. J.; Bogdan, R.; DeVault, M. Introduction to qualitative research methods: a guidebook and resource. Hoboken: John Wiley & Sons, 2015.).

Participants

Fourteen editions of the program were analyzed between 2004 and 2016 in which 361 women between 33 and 82 years old participated, with an average age of 53.5 years old. The total of 62.7% of them were married, 15.8% were separated or divorced, 12.5% were single, and 9% widows; 57.3% had primary education; 24.5% had secondary education and 18.3% had university education. Regarding the clinical profile, 80.5% were women diagnosed with breast cancer and the remaining 19.5% with other types of tumors (colorectal, lung, stomach, utero-vaginal, leukemia). At the start of the program, 41.1% were following active chemotherapy or radiotherapy and 58.9% had completed it (84.5% in the previous three years).

Instruments

The instruments used were the following:

A questionnaire, which was self-administered at the end of each edition, to evaluate the satisfaction with the program were answered by 361 women participants. The institution that organized the program drawn up the questionnaire, following the criteria that would allow the personal satisfaction of the participants and considering their proposals for improvement. It consists of a part of sociodemographic and clinical data and 21 questions in form of a Likert scale, where 1 corresponds to “not satisfied/strongly disagree” and 5 to “very satisfied/totally agree.” It contains questions related to the degree of satisfaction with the design and organization of the program (structure, methodology, duration, attention received by the organizers and professionals, space and resources used...); the contents (interest and usefulness of the different sessions and topics discussed) and the interaction with the group (participation, assessment of relationships and integration with other participants in the group...).

Semi-structured in-depth interviews with 32 participants in the program carried out between March and June 2017, randomly among the survivors of the 14 editions analyzed and ensuring a minimum of 2-3 per edition. The interviews were prepared and conducted by the study’s research team. In accordance with the objectives set, issues relating to satisfaction with the program, the relationship and interaction with the group and the perceived benefits in accepting and coping with the disease or in achieving and maintaining subsequent relationships were addressed. The selection was discontinued when saturation was detected in the data analysis.

A discussion group held in April 2017 in which 5 expert professionals participated who was involved in at least 5 editions of the program (two social workers, a psycho-oncologist, a medical oncologist and an occupational therapist). Issues related to group interaction, the benefits of the program on participants and the achievement, and maintenance of subsequent relationships were addressed.

Procedure and data analysis

Regarding the ethical aspects of the research, the code of ethics recognized by the Declaration of Helsinki (revision of Hong-Kong, September 1989) was followed, in accordance with the recommendations of Good Clinical Practice of the CEE (document 111/3976/88 of July 1990) and the current Spanish legal research regulations.

The data collection process was carried out using different sources of information and saturation was sought in order to validate the results. Professionals from the Department of Social Work of the Spanish Cancer Association in Galicia collaborated in making the materials available (questionnaires, programming and reports). Likewise, with their collaboration it was possible to access the people participating in the in-depth interviews and discussion groups that was selected according to the established criteria, being subsequently contacted and interviewed by the authors of the study. Participation was voluntary and an informed consent was signed. Confidentiality and anonymity was maintained in the treatment of the data. The interviews and the discussion group was recorded and transcribed literally, with an identification coding of the participants. The information collected was analyzed in parallel with the fieldwork process, as is usual in qualitative studies. The purpose was to classify the different parties according to previously established categories so that there is the possibility to objectively identifying these categories within a message. Consequently, the process is framed within the techniques of content analysis whose phases was: reading and understanding the texts, definition of the categories, analysis of them - selection and interpretation - and synthesis. The following main categories of analysis emerged: satisfaction with the design and content of the program, coexistence and relationship with the group, and the benefits of the program in relation to acceptance, mood and positive coping with the disease; acquisition of knowledge and learning; social relations, social support and participation in the community.

Results

Satisfaction with the program, the coexistence and the relationship with the group.

The overall evaluation of the program at its end has remained satisfactory or very satisfactory in percentages above 94% in all editions, with the average being 96.3%. The total of 97.3% valued the relationship with the group of companions as very satisfactory; 98.3% declared that they felt comfortable in the group and all of them declared that they would like to continue maintaining contact with some or several people of the group. The program has an evaluation process in which the women of each edition participate and in which they are also asked to make proposals for improvement. Despite the changes that have been introduced in the design and contents because of this process, it was possible to identify a structure with thematic blocks that was maintained along the evolution of the program in the period analyzed. In all the editions, activities of a formative/educational and psychosocial therapeutic type were alternated with other more playful activities, rest times for small meals shared in groups and free time for the participants to walk, rest and interact with each other. The professionals of the program who participated in the discussion group pointed out that the balance in the programming between psychosocial therapeutic and formative sessions and the playful and free time contents has been evolving throughout the years. In the first three editions, the workshops occupied most of the time scheduled in the morning and afternoon. However, in the evaluations, the participants have been suggesting the desire to have more free time to get to know each other and to speak more spontaneously among themselves. As a result, there was an increase in the time without scheduled content and recreational activities. One of the professionals in the discussion group emphasized: I think the free time they have is a very important activity for them to know each other, share experiences and support each other (GD. psycho-oncologist). Another factor highlighted by the professionals in the design of the program is that it takes place in a space of coexistence with full board and in a natural environment, different from the usual environment of the participants. It promotes a coexistence that takes women away from their worries and daily routines, providing a space for self-care, relationship with the group and rest. Other important aspects in the evaluation by the professional team of the design are that the groups are no larger than 25-26 people; the groups are heterogeneous in age and clinical situations and the special care in the professional attention and accompaniment before, during and after the stay.

Among the difficulties encountered, in the in-depth interviews, almost a quarter of the women reported feelings of anxiety or fear of not being able to relate to each other or of feeling isolated in the group in the days prior to participation in the program, even after being informed and interviewed by the professionals and deciding to participate.

I said yes, but I was afraid of what I would find, my world was my home, I had never participated in anything like this, I didn’t know how I would feel. (E. 6)

For some women it is not easy to leave the house for four days, I had small children. Going there, facing it alone, not knowing anyone, not knowing if you are going to be integrate into the group take you back to the beginning. (E. 13)

At first, I didn’t want to go because I had never gone out like this in a group, but after I went, I wish it didn’t end. (E. 25)

However, in all the interviews it was possible to verify a high valuation of the group coexistence independently of the time passed after the participation in the program, as well as the presence of positive relations with the group or with some of the women in particular. The total of 80% of the participants interviewed valued having the opportunity to meet and exchange experiences with people who share the same problems and concerns. Feelings of self-identification, mutual understanding and unity with the group was predominant. The group is conceived as a space where people can speak and express their thoughts freely, even in cases when they have not managed to verbalize or express themselves openly before.

I felt very comfortable with the people, the place... I could express myself, say my regrets, listen to the others... The contact with the people was a great thing, sharing with the people in the same situation. (E. 12)

When you get there, you see that there are very different people, but it’s as if at that moment we all felt identified. Of course, at the beginning I was afraid of what I was going to find, and of course, at the beginning it is harder for you show yourself, but the good thing is that nobody is forced to talk, and that the most important thing is respect for each one of us, they make that clear to us since the beginning, and in the end everything happens very naturally. You don’t have to share all the opinions, and you don’t identify with everyone equally. (E. 19)

More than a third of the interviews explained they had not felt equally understood in their usual family environment or social network. Among the reasons given were not wanting or not being able to talk openly about their own feelings to avoid worrying the family and people in general, having felt overprotected by family and friends or, on the contrary, having felt disappointed for not having the opportunity to express themselves or not perceiving the interest and understanding of these people about their experiences. Even in the cases of women who have felt accompanied and who consider that they have a good social support network, it was possible to observe an “emotional solitude” related to not knowing people in similar situations and not being able to express themselves openly with other people, but they had this need met by participating in the program.

At home, you may not talk about this, you don’t want to share your pain with them, but with people like you can show your feelings and it is easier to talk. (E. 7)

The family sometimes tries to overprotect you and you don’t want to, you’d like to be treated normally, not as you’re a fragile thing that’s going to break. (E. 18)

I felt alone many times, because I was without my family here...there was a moment when I went to bed and I didn’t want to get up...the group helps a lot, because you feel inside a family, because they treated me as part of the group. (E. 15)

In the professional discussion group, the progress in interaction and cohesion observed in all the editions was very positive, despite the majority of the women did not know each other previously, observing very perceptible changes between the first and last day of the coexistence, and even after the first hours. These changes have taken place in groups that, as already mentioned, present sociodemographic variables and heterogeneous clinical situations. The discussion group also identified cases in which integration presented more difficulties due to state of mind and health, but generally, the group is a support that helps to overcome these situations. Although situations of isolation or non-integration was not detected in the group, professionals point out that some participants, mainly people in worse psychic situations, with personalities that are more introverted or people who have not participated in previous experiences with groups need special observation and complementary individual accompaniment to facilitate their incorporation into the program. On the other hand, the main difficulties pointed out by the women during the stay are also related to fears of the unknown and initial integration into the group. Some women have also pointed out the difficulty of being away from home for a few days, although this is usually pointed out as an opportunity to disconnect from daily obligations. In this sense, good information and individual professional accompaniment in the selection process, as well as during the program, especially in these cases, is one of the main factors that reduce the possible inconveniences derived from group intervention.

You see a change that they experience in hours from the start of the program, even in people who initially find it harder to communicate or participate. (GD. Social educator)

People need spaces to interact, to share experiences, to get out of their routines, out of their isolation. I think that the natural space shared for a few days influences the cohesion of the group; I was very surprised how in a so short time they really live the experience with intensity and sharing. (GD. Psycho-oncologist)

We take great care in the selection of the participants, making sure that they understand the objectives of the program, solving their initial doubts or fears, generally they are afraid of what they will find there, if they are not going to be integrated in the group [...] in some cases it is necessary to motivate them, but we are also attentive and if we see that a person is not prepared to participate it is preferable to respect these limits. (GD. Social worker)

We had only two cases of abandonment of the program, on one occasion a woman had to leave on the second day because of a family problem and another because she was not healthy, but never due to a lack of integration into the group, that is what we tried to work on in the process of selecting participants and in the first moments of the stay. We try to take care of every detail in the coexistence, from the food to the workshops, and the professionals live together and are part of the program. (GD. Psycho-oncologist)

Benefits in acceptance, mood and positive coping with illness

For many participants, the program led to an improvement in their mood. Prior to the program, many of them reported feeling lonely, depressed or misunderstood; not accepting the situation; not being able to talk to others about their illness and isolating themselves socially.

When I was diagnosed my world was falling apart, I was separating, all at the same time, I had to choose between moving or stagnating, the program was like a turning point. (E. 2)

I felt very lonely because I was diagnosed with the disease two months after arriving in Spain... I didn’t really know what to do. (E. 13)

Most of the interviewees indicated that participation in the program helped them to accept the disease better. Among the most notable perceptions are that the program contributes to feeling more confident, realizing that they were not alone, being able to talk about their feelings more easily, and wanting to fight and move ahead with more optimism and hope. In addition, the group experience helped them to improve their self-esteem and learn to think more about themselves.

Talking to people, listening to them, you realize you’re not the only one. (E. 28)

I realized that I had to fight, that everyone has to face the life and the own illness. (E. 5)

It made me accept the disease with more optimism and live it in a different way. (E. 14)

We talked a lot among ourselves those days, I saw people at the first time and in some time they were understanding everything in a different way... the fears... from that moment on they were going to rethink everything. (E. 8).

I had many down moments, but the program helped me a lot, it was like a push to come out stronger and to love myself more. (E. 23)

The groups bring together people with different socio-demographic characteristics, mood, health situations, and coping styles, which seems to favor mutual benefits. When valuing the exchange of experiences, the positive element of reciprocity stands out. One third of the interviews indicated that the program has allowed them to see that there are situations different from their own, in some cases worse (mainly due to younger age at diagnosis, clinical, physical or emotional situation). In this regard, the group not only gave them the possibility to feel heard, but to be able to help others through their own testimony and assistance.

In the group, you see that what happens to you also happens to other people, you exchange experiences... Since we are people who came from different places, ages, medical situations... you see that they contributed and that you contributed too, I think it gives us confidence in ourselves and makes us feel better. (E. 3)

Benefits related to the acquisition of useful knowledge for the management of the disease and its treatment

The contents of the activities were satisfactorily evaluated in the questionnaires by 82.3% of all participants. In all the editions, the training sessions of a biomedical and psychosocial nature received satisfactory or very satisfactory ratings over 80%. For 83.9%, their initial expectations were met with the contents. The information received in the group, both from the professionals and the other participants is very important. Practical information about treatment, sequelae and rehabilitation, nutrition, psycho-affectivity and sexuality, as well as being able to solve doubts with experts, are especially valued. For their part, in the interviews, all the women commented that the program helped them to improve their knowledge and that this knowledge was useful for coping with the disease, regardless of the edition and the time that had passed since their participation. In more than half of the cases they said that there are many issues related to the disease about which they do not receive enough information from the medical and health professionals (especially on the practical level) that they could discover, contrast or discuss in the program. The training and educational contents discussed in the group have strengthened aspects such as the feeling of security and the control of the symptoms of the disease and the treatments, the adoption of new preventive strategies or the increase of the well-being, for example, through the prevention of side effects of the treatments, the improvement of the diet or the practice of exercise and physical activity.

I was always at home...now I set out to walk every day and exercise...since then I know what it is to do something for me and for myself. (E. 6)

I didn’t have habit to use skin creams, but now I do necessary skin care. (E. 17)

You solve many doubts about health, nutrition, sexuality or how to take care of yourself that are not explained in the consultation. (E. 26)

Benefits in social relations, community participation and social support

Among the benefits of the program have also been described the acquisition of greater communication skills and relationship with the environment. More than half of the women interviewed indicated that the program helped them to have greater receptivity to other people and to have more facilities to relate to unknown people. There are even women who refer that they were only receptive during the days and with the people of the program because at that time they were in a space of trust and with people unknown, and it paradoxically could have facilitated the expression of feelings and the exchange of experiences.

There I saw for example a very shy girl who at the end showed a great change, at the beginning she didn’t speak almost and at the end she opened up a lot, I think she needed it. (E. 1)

The program made me more receptive, more outgoing, more able to express my feelings. (E. 14)

At the moment you are there you are very free, I was an open person only there, with the passage of time I was returning to my life, but that experience I have kept in a little place with much care. (E. 20)

This improvement in communication also appears in the family environment or when interacting with or asking questions of the medical team.

Talking about some issues or concerns with my husband or children is not easy, but I think I learned to talk to them about my wishes more easily, to think a little more about myself, about my needs. (E. 11)

It helped me to have more confidence in myself, about what to do with my illness... and when I went to the doctor, I already started to ask him, to tell him... because before I didn’t have the courage... it helped me a lot. (E. 29)

The group of professionals also highlighted the changes in the way of relating observed in some women who were not accustomed to participating in groups and how especially beneficial it is in cases of difficulties in social skills or in establishing social relationships, under specific emotional condition or lacking social support network.

Obviously not all women come to the program in the same circumstances. Some of them find it more difficult to express themselves or relate to the group because they are more introverted or are in a worse state of mind, but in those cases you often see the changes that are most surprising and how beneficial the program can be. We have had cases of people who for the first time talked about their fears, their doubts [...] There are people who live in rural areas or who have family and friends in other countries with a very limited support social network, who had never met people in similar situations, who really had no one to share what is offered to them in a space like this. (GD. Social worker 2)

The program has also shown an increase in social participation in the community, perceptible with the realization of new activities and meetings carried out by initiative of the participants after the program. In all groups, the interviews identified, to a greater or lesser extent, the organization of meetings and activities in an autonomous manner (lunches or dinners, recreational activities, excursions...), as well as greater participation in other activities organized by the association itself or by others in the reference communities.

Since then, for me it was the take-off, I started to interact more. (E. 7)

Now I participate in more activities than before, in the association and outside it, and I keep in contact with many people of the group. (E. 16)

After the program, relationship and support networks were maintained, at different levels and intensities, favored in recent editions by the use of social networks and applications such as WhatsApp, which offered not only emotional but also physical and instrumental support. These networks were active over time, especially during the two or three years following the program. They offer emotional support to people in the group who have personal problems, who relapse or whose physical health is worsening. However, accompaniments to medical tests, long hospital stays or home visits by group members in cases of relapse have also been described. Some people who have met in the group become part of the women’s network of close friends. In other cases, contact is not maintained or is gradually lost with the passage of time, the return to daily life or because it is a stage they prefer to leave behind. Even in these cases, the value of the group experience remains positive and the personal benefits in accepting and coping with the illness are recognized.

You always connect more with some people than others do, I maintain a lot of friendship with two people in the group. (E. 4)

We still have a WhatsApp group, we’ve always maintained contact and we see each other often, every year we try to get together, the ones we can, somewhere. (E. 19)

Social networks help us to keep in touch with people from far away. I live in a village and if I didn’t have this network, it would be very difficult. (E. 30)

I think they support each other [...] not only regarding the disease, but many times also on a personal level. Many times they tell us about their meetings, how they keep in touch, visit and support each other, not only when someone needs it, they share the good news too. (GD. Social worker1)

Discussion

The results of our study suggest that an interdisciplinary group intervention for women with cancer, offered in a community setting, benefits them in terms of positive coping with the disease and improved well-being. Other group interventions, although they have used different methodologies, suggest similar benefits (Beatty et al., 2018BEATTY, L. et al. A systematic review of psychotherapeutic interventions for women with metastatic breast cancer: Context matters. Psycho-Oncology, Hoboken, n. 27, n. 1, p. 34-42, 2018.; Cameron et al., 2007CAMERON, L. D. et al. Changes in emotion regulation and psychological adjustment following use of a group psychosocial support program for women recently diagnosed with breast cancer. Psycho-Oncology, Hoboken, v. 16, n. 3, p. 171-180, 2007.; Campbell et al., 2004CAMPBELL, H. S.; Phaneuf, M. R.; Deane, K. Cancer peer support programs-do they work? Patient Education and Counselling, Amsterdã, v. 55, n. 1, p. 3-15, 2004.; Cohen; Fried, 2007COHEN, M.; Fried, G. Comparing relaxation training and cognitive-behavioral group therapy for women with breast cancer. Research on Social Work Practice, Thousand Oaks, v. 17, n. 3, p. 313-323, 2007.; Giese-Davis et al., 2006GIESE-DAVIS, J. et al. Emotion al expression and diurnal cortisol slope in women with metastatic breast cancer in supportive-expressive group therapy: a preliminary study. Biological psychology, Amsterdã, v. 73, n. 2, p. 190-198, 2006.; Grégoire et al., 2017GRÉGOIRE, C. et al. Group interventions to reduce emotional distress and fatigue in breast cancer patients: a 9-month follow-up pragmatic trial. British Journal of Cancer, Londres, n. 117, n. 10, p. 1442-1449, 2017.; Hoey et al., 2008HOEY, L. M. et al. Systematic review of peer-support programs for people with cancer. Patient Education and Counselling, Amsterdã, v. 70, n. 3, p. 315-37, 2008.; Iancu et al., 2017IANCU, M. et al. The effect of psychological group intervention on emotional problems, event impact and quality of life in breast cancer patients under radiotherapy: a pilot study. Journal of Evidence-Based Psychotherapies, Cluj-Napoca, v. 17, n. 2, p. 133-146, 2017.; Lieberman; Goldstein, 2006LIEBERMAN, M. A.; Goldstein, B. A. Not all negative emotions are equal: the role of emotional expression in online support groups for women with breast cancer. Psycho-Oncology, Hoboken, v. 15, n. 2, p. 160-168, 2006.; Stevinson; Lydon; Amir, 2011STEVINSON, C.; Lydon, A.; Amir, Z. Cancer support group participation in the United Kingdom: a national survey. Supportative Care Cancer, Berlim, v. 19, n. 5, p. 675-683, 2011.).

There was a high level of satisfaction with the program, with the coexistence and group integration, and the establishment of positive relations between the participants. The prevalence of feelings of self-identification and mutual understanding has been highlighted as favoring the ability to express oneself and speak openly, the exchange of experiences and mutual help. Perceived support is appreciated as different from that received in family settings and in the usual social network (Ussher et al., 2006USSHER, J. et al. What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer. Social Science Medicine, Nova York, v. 62, n. 10, p. 2565-2576, 2006.).

The program has shown good results in the acquisition of positive coping styles and strategies in the face of the disease, since it allows contact with different coping styles, self-care strategies and social relations. The majority of the participants said that the program favored their acceptance of the disease, the fighting spirit, optimism and hope, and, in general, a more positive attitude towards it. In line with existing literature, more positive acceptance and coping styles are associated with better adaptation to the disease situation (Schnoll; Knowles; Harlow, 2002SCHNOLL, R. A.; Knowles, J. C.; Harlow, L. Correlates of adjustment among cancer survivors. Journal of Psychosocial Oncology, Filadélfia, v. 8, n. 20, p. 37-59, 2002.).

The program has also allowed the acquisition of new knowledges about the disease and treatments and the exchange of information on physical, psychological and social aspects, thus promoting education and training in strategies that can help to assume in a more positive way the process, manage unexpected symptoms and accept the chronic symptomatology (Bennion; Molassiotis, 2013BENNION, A. E.; Molassiotis, A. Qualitative research into the symptom experiences of adult cancer patients after treatments: a systematic review and meta-synthesis. Supportative Care Cancer, Berlim, v. 21, n. 1, p. 9-25, 2013.; Ramos et al., 2018RAMOS, C. et al. The effectiveness of a group intervention to facilitate posttraumatic growth among women with breast cancer. Psych-Oncology, Hoboken, n.27, p. 258-264, 2018.; Weis et al., 2020WEIS, J. B. et al. Psychoeducational group intervention for breast cancer survivors: a non-randomized multi-center pilot study. Supportive Care in Cancer, Berlim, v. 28, n. 7, p. 3033-3040, 2020.). Having adequate information including several elements (Fletcher et al., 2017FLETCHER, C. et al. The information needs of adult cancer survivors across the cancer continuum: A scoping review. Patient Education and Counselling, Amsterdã, v. 100, n. 3, p. 383-410, 2017.) is one of the aspects most valued by our participants, relating to greater control of treatment, self-care and less anxiety (D’haese et al., 2000D’HAESE, S. et al. The effect of timing of the provision of information on anxiety and satisfaction of cancer patients receiving radiotherapy. Journal Cancer Education, Thousand Oaks, v. 15, n. 4, p. 223-227, 2000.; Husson; Mols; van de Poll-Franse, 2011HUSSON, O.; Mols, F.; Van de Poll-Franse, L.V. The relation between information provision and health-related quality of life, anxiety and depression among cancer survivors: a systematic review. Annals of Oncology, Boston, v. 22, n. 4, p. 761-72, 2011.; Turner et al., 2005TURNER, J. et al. Clinical practice guidelines for the psychosocial care of adults with cancer. Psycho-Oncology, Hoboken, v. 14, n. 3, p. 159-173, 2005.).

Finally, the program contributed to increasing social relations, participation and the generation of new social networks of support with continuity. Some groups have subsequently managed to become self-supporting and to form a network that offers emotional, informational and even instrumental support to its members. This increase in social networks and social support has been linked in several studies to a higher quality of life after a cancer diagnosis and helps to avoid the problems of isolation and loneliness (Embuldeniya et al., 2013EMBULDENIYA, G. et al. The experience and impact of chronic disease peer support interventions: a qualitative synthesis. Patient Education and Counselling, Amsterdã, v. 92, n. 1, p. 3-12, 2013.; Hasson-Ohayon et al., 2016HASSON-OHAYON, I. et al. The need for friendships and information: dimensions of social support and posttraumatic growth among women with breast cancer. Palliative supportive care, Cambridge, v. 14, n. 4, p. 387-392, 2016.; Howard et al., 2014HOWARD, A. F. et al. Trajectories of social isolation in adult survivors of childhood cancer. Journal of Cancer Survivorship, Nova York, v. 8, n. 1, p. 80-93, 2014.; Ikeda et al., 2013IKEDA, A. et al. Social support and cancer incidence and mortality: the JPHC study cohort II. Cancer Causes Control, Oxford, v. 24, n. 5, p. 847-860, 2013.; Kroenke et al., 2013KROENKE, C. H. et al. Social networks, social support, and burden in relationships, and mortality after breast cancer diagnosis in the Life After Breast Cancer Epidemiology (LACE) study. Breast Cancer Research and Treatment, Boston, v. 137, n. 1, p. 261-271, 2013.; Steptoe et al., 2013STEPTOE, A. et al. Social isolation, loneliness, and all-cause mortality in older men and women. PNAS, Washington, DC, v. 110, n. 15, p. 5797-5801, 2013. Disponível em: <Disponível em: https://bit.ly/2AgUWUj >. Acesso em: 11 jun. 2020.
https://bit.ly/2AgUWUj...
; Tilvis et al., 2012TILVIS, R. S. et al. Social isolation, social activity and loneliness as survival indicators in old age; a nationwide survey with a 7-year follow-up. European Geriatric Medicine, Amsterdã, v. 3, n. 1, p. 18-22, 2012.).

The comparison with previous studies is limited because these are group intervention proposals with divergent designs, contents and evaluations, applied also in situations and populations with different sociodemographic and clinical characteristics. However, our research allows us to draw some interesting conclusions regarding intervention with groups of women who have undergone breast cancer surgery. We have been able to identify topics of interest and a structure in the organization and contents of the program that was maintained in the period analyzed. Aspects such as the heterogeneity of the groups; the combination of training type sessions (biomedical, psychosocial, self-care...) with others of a recreational and free time type; the intensive coexistence in a natural space between the participants and the professionals or the care of professional attention and accompaniment before, during and after the program, seem to be some of the factors that are related to the good results of this program.

We also want to emphasize that this study allowed for the first time in a Spanish population to analyze a group program considering a significant number of editions and participants, which emphasizes that the results have been maintained from a similar design of the group intervention in the analyzed period. However, we must point out among the limitations of our study, the fact that pre-post test measurement instruments were not applied, and the need to extend these results with the use of control groups or with the evaluation of specific interventions in relation to the sociodemographic and clinical characteristics of the participants, trying to advance in the designs and criteria that may be more suitable in each situation.

Final consideration

In conclusion, our study detected a high satisfaction of the women with breast cancer with a group intervention of interdisciplinary character. We perceive benefits in relation to the acceptance, the state of mind and the confrontation of the disease; the acquisition of knowledge and learning of biomedical, psychosocial character and self-care useful for the understanding and the approach of the disease and its sequels, besides propitiating the social relations, the social support and the participation in the community.

Considering these types of interventions are still a minority in the Spanish context, we point out the importance of advancing in the design, implementation and research of group programs from the psychosocial field that allow for the improvement of coping strategies and support in populations of women diagnosed with cancer.

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Publication Dates

  • Publication in this collection
    17 Aug 2020
  • Date of issue
    2020

History

  • Received
    27 May 2019
  • Reviewed
    21 Mar 2020
  • Accepted
    25 May 2020
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