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��05PM427 5/3/01 12:58 pm Page 127 Palliative Medicine 2001; 15: 127 134 Spiritual thoughts, coping and sense of coherence in brain tumour patients and their spouses* Susan Strang Nurse, Department of Oncology, Sahlgrenska University Hospital, Gothenburg and Peter Strang Professor, Palliative Research Unit, Link�ping University, Vrinnevi Hospital, Norrk�ping Abstract: When a person is diagnosed with a life-threatening disease, existential questions are easily triggered. The aims of this study were to explore to what extent brain tumour patients and their next of kin were able to cope, understand and create meaning in their situation, to explore whether spirituality could be supportive and to analyse whether these concepts are related to Antonovsky s concept of sense of coherence. Using a purposive sampling technique, 20 patients and 16 of their next of kin took part in tape-recorded interviews. A content and context analysis was performed using a hermeneutic approach. We found that comprehensibility was to a large extent constructed by the patient s own thoughts and theories, despite an insecure situation. Manageability was achieved by active information-seeking strategies, by social support and by coping, including positive reinterpretation of the situation. Meaningfulness was central for quality of life and was created by close relations and faith, as well as by work. A crucial factor was whether the person had a fighting spirit that motivated him or her to go on. As only three patients were believers, trust in God had generally been replaced by a belief and confidence in oneself, in science, in positive thinking and by closeness to nature. Sense of coherence as a concept can explain how exposed persons handle their situation. In its construction, sence of coherence integrates essential parts of the stress/coping model (comprehensibility, manageability) and of spirituality (meaning). Key words: sense of coherence; spiritual; coping; brain tumour; spouse Resum�: Le diagnostic de maladie � pronostic vital g�n�re facilement chez le patient des questions existentielles. Les objectifs de cette �tude �taient de savoir dans quelle mesure les patients atteints de tumeur c�r�brale et leur famille pouvaient faire face, comprendre et donner du sens � cette situation, de savoir si la spiritualit� pouvait �tre un soutien et d analyser si ces concepts sont li�s au concept de conscience de coh�rence d Antonovsky (SOC). En utilisant la technique d �chantillonnage intentionnel, 20 patients et 16 de leurs proches ont particip� � des entretiens enregistr�s. Nous avons effectu� une analyse de contenu et de contexte par le biais d une approche herm�neutique. Nous nous sommes rendus compte que la compr�hensibilit� d une situation r�sultait en grande partie des propres pens�es et th�ories du patient, malgr� une situation d ins�curit�. Les strat�gies de recherche d informations active, le soutien social et les capacit�s � faire face, incluant une r�interpr�tation positive de la situation ont favoris� la capacit� � g�rer la situation. La notion de sens �tait centrale pour la qualit� de vie et �tait cr��e par des relations proches et la confiance, autant que par le travail. Un facteur de motivation crucial pour Address for correspondence: Ms Susan Strang, Neurological Unit, Sahlgrenska University Hospital, 413 45 Gothenburg, *This paper is based on the winning entry in the Postbasic Section Sweden. E-mail: susan_strang@hotmail.com of the Doyle Prize, 2000. � Arnold 2001 0269 2163(01)PM427OA 05PM427 5/3/01 12:58 pm Page 128 128 S Strang and P Strang aller de l avant �tait le fait de poss�der un esprit combatif . Etant donn� que seulement trois patients �taient croyants, la foi en Dieu �tait g�n�ralement remplac�e par une foi et une confiance en soi, dans la science, dans la pens�e positive et dans une proximit� � la nature . Le concept du SOC peut permettre d expliquer comment les personnes expos�es g�rent leur situation. Par son contenu, le SOC int�gre des �l�ments essentiels du mod�le stress/coping (compr�hensibilit�, gestion) et de la spiritualit� (sens). Mots-cl�s: sens de la coh�rence; spiritualit�; coping; tumeur c�r�brale; famille Introduction 2) manageability meaning that resources are available to meet the demands; A malignant brain tumour means a double threat, 3) meaningfulness meaning that the demands are not only to life itself but also to the individual s challenges worthy of emotional investment. personality, as many patients are stricken with functional and cognitive deficits as the tumour pro- Since, for example, good relationships can provide gresses. Therefore, not only the physical, psycho- a sense of meaning, a severely ill person may still logical and social, but also spiritual dimensions experience a good quality of life, knowing that he should be integral parts of palliative care1,2 and all or she is important to his or her family, that there care systems that claim to be holistic.3,4 However, is a meaning in his or her life. The component of most of the studies on patients reactions deal with meaningfulness creates motivation and is therefore physical or psychosocial aspects, and patients spiri- central. Frankl10 supports this by stating there is tual needs have not been adequately addressed.5,6 nothing in the world that would so effectively help Every person wrestles at times with existential and one to survive even the worst conditions as the spiritual issues, but these questions are accentuated knowledge that there is a meaning in one s life . The when a person is diagnosed with a serious disease.7,8 sense of coherence is the extent to which a person Among people stricken with an illness, certain is able to cope with a severe crisis and create mean- individuals manage relatively well and have a good ing in his or her life. Other studies in various con- quality of life, while others give up under the pres- texts have shown that people with a high sense of sure, despite the fact that the external circumstances coherence experience a better quality of life, regard- are the same. Besides the coping and defence less of the level of symptoms or functional health.11 mechanisms used by patients and their spouses, Sense of coherence has many similarities with the meaning is central for one s quality of life. Anto- concept of coping, as effective coping increases novsky9 developed the useful, salutory model of manageability and information-seeking coping stra- health, sense of coherence, where the crucial com- tegies increase comprehensibility. During the Second ponent is meaningfulness. Individuals who expe- World War, Anna Freud12 studied how children rience a high level of coherence despite a difficult coped with the stress of the bombing of London. situation can still experience a good quality of life. She introduced the term cope , but not until the Sense of coherence includes three main categories: 1960s did coping become an established psycho- logical term. Lazarus13 emphasizes coping as a 1) comprehensibility implying that the stimuli are process and defines coping as ongoing cognitive and predictable and explicable; behavioural efforts to manage specific demands that 05PM427 5/3/01 12:58 pm Page 129 Spiritual thoughts, coping and sense of coherence 129 are appraised as taxing the resources of a person. rence in their stressful situation; Coping is today also more clearly related to " to explore the extent to which spirituality could meaningfulness by the introduction of meaning- give support or be a hindrance; based coping processes.14 In these strategies even " to analyse how the above mentioned aspects are spiritual beliefs and practices are now included. related to Antonovsky s concept of sense of Meaning is a central component not only in coherence. sense of coherence, but also in the spiritual/ existential dimension; spirituality can in that sense Methods be related to sense of coherence. Spirituality is also related to the other two components of sense of Patients coherence, namely comprehensibility and manage- Twenty patients with malignant brain tumours of ability, as religion and faith provide explanations of grade II IV were included. When possible, their existential questions and result in increased next of kin were also enrolled in the study (n=16). manageability, as the individual accepts the situa- Exclusion criteria were functional and cognitive tion.15,16 deficits that would impair participation in interviews. There is no homogenous description of the con- Purposive, information-rich, maximum-variation cept of spiritual dimension .17,18 As concluded by sampling was aimed for, with respect to age, sex, Peter Speck19 the words spiritual and religion are ethnicity or ethnic origin and education. The num- often used interchangeably. He stresses that spiri- ber of interviews was not decided in advance; the tuality does not necessarily need to be synonymous study continued until a satisfactory conclusion was with religiosity and that a wider understanding of reached (saturation).21 The interviews were ana- the word spiritual, as relating to the search for exis- lysed successively and data were compared with pre- tential meaning within any given life experience, vious interviews. Recruitment was stopped when no allows us to consider spiritual needs and issues in the new descriptions were found. absence of any clear practice of a religion or faith. Religion pertains to the outward practice of Study spiritual understanding and/or the framework for a A pilot study was performed with four patients, who system of beliefs, values, codes of conduct and were not included in the main study. The purpose rituals.19 Religion can be helpful in coping with ill- was to practise and evaluate data collection and ness, and is a source of well-being and hope for observe the patients reactions. many individuals.16 The familiar religious rituals All consecutive participants were sent a letter may comfort and provide meaning to everyday life outlining the study. The researcher asked them and help the patients through chaotic, threatening 1 week later by telephone whether they were situations. willing to participate in the study. The interviews, Thus, the concept of meaning is emphasized in which were explorative and semistructured, were spirituality as well as in sense of coherence, although tape-recorded and then transcribed slightly modi- partly from different points of view. This is true fied from verbatim. Initial field notes were made even for existentialism, a philosophical movement immediately after each interview.22 The interviews that deals with the questions of the basic conditions focused on four comprehensive issues: of being a human. An individual struggling with questions of life has to find his or her own answers 1) comprehensibility; to the challenging life questions and thus find mean- 2) manageability/coping strategies; ing by himself or herself.20 3) meaningfulness, for example what creates mean- ing in life; 4) whether spirituality contributes to a sense of The aims of the study coherence. The aims of this study were: " to explore to what extent brain tumour patients Analysis and their next of kin were able to cope, under- In accordance with the interpretative process stand and create a meaning or sense of cohe- described by Richoeur,23,24 three main steps were 05PM427 5/3/01 12:58 pm Page 130 130 S Strang and P Strang followed. In the first step all interviews were read Ethics through in order to get an overall picture. The As the questions about the meaning of life and second step consisted of a structural analysis (inter- death are deeply personal, the ethical issues were pretative reading) based on the hermeneutic circle discussed thoroughly before the actual study. (see below). The third step involved a final inter- Approval to conduct the study was obtained from pretation of the whole. the regional research ethics committee. The interpretation of data was performed using a hermeneutic approach22 25 and interpreted in light of Results Antonovsky s concept of sense of coherence.9 The scientific assumptions were mainly derived from exis- tential hermeneutics, as developed by Heidegger26 Comprehensibility the cognitive component Most of the patients gave biological explanations for and Gadamer.27 A central idea of hermeneutics is to the origin of their disease. These included here- pay attention to context and original purpose in order dity, hormonal disturbances, head injury, tinnitus, to enrich the previous understanding. The basis for immune defence impairment, chemicals, smoking the analysis has the following seven components. and environmental influence. There were different 1) The hermeneutic circle is used (a continuous opinions about the impact of psychosocial factors, movement between the whole and the parts, a however. Some respondents stressed that when a dialogue with the text, in which the meaning of person is out of balance, or under mental stress, separate parts is determined by the global diseases such as brain tumours can develop. Others, meaning of the text). however, stated that psychological health had no 2) The interpretation of the meaning is finished influence on the matter and considered the idea when a coherent concept without contradictions ridiculous. is attained. Besides physical/biological explanations such as 3) Partial interpretations are compared with other radiation, heredity, injury and obstetric injuries, sources of knowledge about the patient. the spouses were more convinced about the impact 4) The autonomy of the text is emphasized (which of the psyche on development of brain tumours. means that the researcher should interpret how Despite these explanatory models, both patients the text itself describes a theme). and their spouses expressed insecurity as to the ori- 5) The comprehension of the themes of the text is gin of brain tumours, because, as they put it, not essential for the interpretation. even the doctors knew for sure . 6) The researcher must be aware of his or her He hit his head 30 years ago. He is convinced that this assumptions and presuppositions; there is no incident gave him the tumour. I think that he has had it unprejudiced interpretation of the text and latent for a long time but I know that it is the stress and the researcher cannot neglect his or her own infections that have provoked it. comprehension. The value of detailed information about the illness, 7) Creativity is to be used, so that the interpreta- symptoms and future was emphasized, while uncer- tion enriches the previous understanding of the tainty obstructed comprehensibility and increased themes.25 the sense of chaos and anxiety. Many efforts to intellectualize, redefine and diminish the serious- Reliability ness of the disease were made. A dialogical validation28 was made with the patients, None of the respondents perceived their illness to as similar questions were addressed several times dur- be some kind of punishment from God or any other ing the interview, to ensure that the patients genuine external power. Still, there were many questions perception was caught. A dialogical intersubjectivity about justice. Why is this happening to me, when I was aimed at:28 the interviews were analysed sepa- have lived an honest life, while less conscientious rately by the study s two authors and then compared people are not afflicted? Thus, besides the appar- for similarities and differences. The material and the ently evident biological and psychological explana- interpretations were discussed until agreement was tions, both patients and spouses had unresolved reached (communicative validity). existential questions that hampered the compre- 05PM427 5/3/01 12:58 pm Page 131 Spiritual thoughts, coping and sense of coherence 131 hensibility, such as Why? , Why me? , What is the The spouses referred not so much to their internal meaning, where is the justice? . resources as to the external ones. They tried to get social support from various conversation partners such as therapists, doctors, colleagues and friends. Manageability the behavioural component Work, hobbies and everyday matters took much of A characteristic feature of individuals who managed their time and by doing so they could partly keep to cope with life was that they had strong inherent the illness at a distance, that is they used distraction resources of their own. They expressed confidence as coping. As the partner s personality gradually in themselves and in their own strength. They were changed, much of the responsibility was transferred actively seeking information, engaged in being to the healthy spouse. Many of them assumed a pro- cured and made positive reinterpretations in which tective attitude and took on responsibility for the hope played a prominent part. survival of their spouses; by doing so, they could A man with malignant tumour, grade IV said: At first I better control the situation. sought for information and then I decided to recover. One My greatest sorrow is that I have lost a part of the man I has to believe and I am going to defeat this tumour & . was married to. But if I had not been there, he would have been dead by now, because he does not notice anything The respondents presented various types of coping himself and the hospital does not check up on things. and defence mechanisms, such as rationalization, bargaining, control, distancing, humour and re- While many patients showed a fighting spirit and pression, in order to increase manageability. As an believed in cure, more rapid acceptance was seen in example, a 30-year-old man, who, due to his illness, the spouses due to the fact that they noticed the was about to lose both his job and his family, could change in personality. manage his everyday life by using coping mecha- Soon I won t have my husband any more; he is going to nisms such as distancing, rationalization and re- die. He, himself, is not aware of that. But I have already pression. planned the whole funeral. Now this tumour has hit me and I have to solve the situ- At the same time, the spouses experienced a severe ation. Personally, I still think that this has turned out very sense of powerlessness from just standing by. Since well. everything centred on the patient, it was not easy for Family, close friends and hospital staff were very the spouse to get any attention. This situation was helpful in coping with the situation. Work and hob- difficult to manage. bies were of great importance for some, mainly as I have shown a great deal of consideration for my hus- a distraction. Religious faith generally did not band, but he has difficulties listening to my problems. increase manageability, as only three respondents Because he says that there is nothing wrong with me. were believers. One of these three especially stressed prayer as a powerful tool in this exposed situation, whereas several of the non-believers men- Meaningfulness the motivational component tioned that religious faith is probably helpful for Despite the exposed situation, there were areas in religious people, but not for themselves. the patients lives, mainly close relations to children Factors that impaired the sense of manageability and family, that were of great emotional importance were depression and isolation, lack of information and that gave meaning to life. It also appeared that and a feeling of being deserted or being a victim of good relations became better, while other frail rela- circumstances. Not to be recognized as a complete tions broke down because the marriage could not person was humiliating and increased the feeling of loneliness. Relatives who failed them, bad treat- stand the pressure from the onset of the disease. Other factors that gave meaning to life were music, ment by the staff and an abrupt manner in giving the work and hobbies. A complicating factor was that diagnosis were factors that often hampered coping. many of the patients lost their jobs and therefore A woman in her 40s who has had a low-grade brain had to redefine its importance. However, many tumour for 10 years: The illness itself has not changed adapted to the new situation and reached a sort of my life. What has changed me is that people have not believed me or my fears, my misgivings . acceptance. 05PM427 5/3/01 12:58 pm Page 132 132 S Strang and P Strang A man who had always regarded his work as most impor- had no faith at all or trusted mainly in their own tant said: Yes, I have got a new outlook. My job was real- strength, or in their doctor. ly important before, but now it is not. Even though it used I suppose I have a belief, but not of the kind that helps. to be . . . . It is my mental stability, my inner strength that has helped The acceptance was characterized by a component me. of reappraisal of life. Many respondents said that they now took better care of their lives, that their Discussion personality had grown stronger and that they were more positive about life. Living close to death had The need for information is profound, especially as given them new dimensions. In some patients it was regards life-threatening diseases such as brain difficult, though, to distinguish between what was tumours, as comprehensibility is important for the result of an active crisis process that led to coping, which is in good agreement with other acceptance and what was an illusory acceptance due studies.29 It is therefore not surprising that infor- to the brain damage. mation seeking is a recognized and often used Factors that increased meaninglessness were coping mechanism that increases both comprehen- functional deficits, personality changes and unre- sibility and manageability. Information also consti- solved death anxiety. Further, many of the respon- tuted a partly unmet need in this study. To listen to dents mentioned spontaneously that their reduced patients and to inform them is therefore of utmost financial circumstances made everyday life limited importance.30 Antonovsky stresses the value of and therefore less valuable. However, some stressed clearing away unrealistic interpretations to create the opposite, that money and position had lost their order out of chaos and increase the sense of com- importance. prehensibility. Illness, accidents and death are not In the husband wife relationship, the roles were desirable, but when they occur, they should at least changed. The marriage became unequal as most of be comprehensible in order to achieve acceptance.9 the patients went through some kind of personality The main goal of coping strategies is to increase change including regression. Although the spouses manageability, although some strategies also facili- had new values in life in many ways and felt needed, tate comprehensibility. Coping mechanisms identi- they expressed conflicting feelings. fied in this study that had clear components of Spirituality was related to meaning, although the comprehensibility were information-seeking, intel- value of a religious faith was ambiguous. Two infor- lectualization, redefinition and rationalization. To mants stressed that religion helped them to create specifically increase manageability, various coping meaning in their lives, while for the third religious mechanisms as described by Lazarus13 can be used. person, her faith became almost a burden and These include confrontative behaviour coping, dis- increased her sense of meaninglessness. tancing, self-controlling, seeking social support, I only feel hopelessness; who could help me? Why has accepting responsibility, escape-avoidance, planful God sent me this illness, what have I done, what is the problem-solving and positive reappraisal.13 In this meaning of it? study, positive reappraisal and redefinition and While traditional religion had little importance for believing in one s own strength were the most pro- most of the respondents, they still had some kind of minent strategies. This is in good agreement with spiritual or existential experience that helped them Shelly Taylor,31 who states that coping that enhances to create meaning. That could consist of a belief in and focuses on the positive parts is important for a power beyond oneself, a life after death, destiny, maintenance of health. Hope was prominent in the goodness of life or the grandness of nature. The many respondents, although its content changed experience of church was equivocal: a few could during the course of the disease, which is in agree- experience peace when being in a church while ment with other studies.32 other considered that the church might be good for Motivational parts of the sense of coherence some people, but not for them. Some of the component of meaningfulness consisted of children, respondents considered themselves agnostic, and family, friends, work, hobbies and faith. Yet, these 05PM427 5/3/01 12:58 pm Page 133 Spiritual thoughts, coping and sense of coherence 133 were not questions of decisive importance in every founded in scientific rationality.36 A specific reli- case. There were individuals who had both a family gious faith, which gave comprehensibility and and work but still experienced life as meaningless, guidance for life to earlier generations, is rare while others, despite great losses, had much to fight today.37 Nevertheless, the respondents struggled for. The existential philosopher Karl Jaspers with existential issues such as the meaning of life, denotes stressful events in life as border situations , death and destiny. An example of this is the ques- where the crisis either leads to meaninglessness and tion of justice. In a secularized country it is unusual emptiness or to an increased positive valuing of today to believe that illness is inflicted by God or by life.33 Those who possessed a fighting spirit man- any other power. Yet the question is addressed aged relatively well. By fighting spirit, we mean beyond the individual: Why have I been afflicted persons that had: with this disease? Where is the [divine] justice? . Faith in God has not been replaced by any clear philo- " faith in God or other powers or confidence in sophical alternatives and therefore persons may feel oneself, others (for example, doctors); abandoned. Today, faith is partly replaced by confi- " hope a positive attitude to life, although the rea- dence in, for example, oneself, in the doctor, in sons for hoping changed during the course of the positive thinking. In other, less secularized, coun- disease; tries, religious tradition plays an important part in " love of family, friends or work. people s lives.38 As Burton states,17 Spirituality/ These findings have similarities with a study con- religion is a significant element in the life of most Americans . ducted by Akechi et al.34 comprising 455 cancer We have used sense of coherence as our main patients. In that study fighting spirit was correlated model to understand the patients and the spouses with relations and social interaction, support from strategies for handling their stressful and situation. physicians and with the performance status of the As shown in the results, coping mechanisms can be patient.34 Akechi et al. refer to Moorey and Greer s understood using this model, as coping enhances description of fighting spirit: the patient sees the manageability and comprehensibility and, to a cer- diagnosis as a challenge, has an optimistic view of the future, believes it is possible to exert some con- tain extent, also meaning, if meaning-based coping is used.14 In the same way, spiritual and existential trol over the illness and manifests confrontative issues were possible to allocate, especially to the coping responses . That life s vicissitudes might be seen as a challenge is pointed out by Greer in a 15- central sense of coherence category of meaning/ year prospective study of women with breast can- meaningfulness . This does not mean that the three models (coping sense of coherence spirituality) are cer.35 They found that those women who showed interchangeable, but a clear relationship does exist. fighting spirit , that is saw cancer as a challenge and had a purpose and meaning, had the best dis- The models can be distinguished as follows: the central question in a stress coping model would be: ease outcome. The losses that the respondents experienced dur- What/which are the stressors and what are my resources to handle them? . Spirituality, including ing the period of illness (for example loss of work, existentialism from a philosophical point of view money, relationships) affected their lives deeply. In would be more concerned with the question What this context, too, it was obvious that individuals with is the higher, inherent meaning of this? How can I fighting spirit , or, as Antonovsky expresses it, a create meaning in this situation? . Sense of coher- profound sense of coherence, experienced life as meaningful despite the losses. Meaningfulness re- ence is the intermediate position joining the coping model and the spiritual/existential issues. presents the most important part, because without it neither comprehensibility nor manageability will last long. Those people who take an active part in life and are willing to invest energy have better Acknowledgements chances of finding resources for problem-solving. This study was supported by Timmermansorden In many modern countries, such as Sweden, and by The Cancer Foundation at Sahlgrenska Uni- people have lost their religious beliefs to a large versity Hospital, Gothenburg. Beth Chapple is extent and replaced them with secular values, acknowledged for her editing work. 05PM427 5/3/01 12:58 pm Page 134 134 S Strang and P Strang References spirituality: definition, description and measurement. J Human Psychol 1998; 28: 5 18. 19 Speck PW. Being there: pastoral care in time of illness. 1 Doyle D, Hanks G, MacDonald N eds. Oxford London: SPCK, 1988. textbook of palliative medicine, 2nd edition. Oxford: 20 Yalom I. Existential Psychotherapy. New York: Basic Oxford University Press, 1998. Books, 1980. 2 Strang P. Palliative medicine. A new research field 21 Patton MQ. Qualitative evalution and research with specific demands. L�kartidningen 1999; 96: methods. Newbury Park, CA: Saga Publications, 1990. 26 29. 22 Kvale S. InterViews. Thousand Oaks, CA: Sage 3 Watson J. Nursing: human science and human care: a Publications, 1996. theory of nursing. New York: National League for 23 Richoeur P. Interpretation theory: discourse of the Nursing, 1988. surplus of meaning. Fort Worth, TX: Christian 4 Ross L. Spiritual aspects of nursing. J Adv Nurs University Press, 1976. 1994; 19: 439 47. 24 Richoeur P. Hermeneutics and the social sciences. 5 Highfield M, Cason C. Spiritual needs of patients: New York: Cambridge University Press, 1981. are they recognised? Cancer Nurs 1983; 6: 187 92. 25 Radnitzky G. Contemporary schools of metascience. 6 Giorgiella M, Berkman B, Robinson M. Spirituality Gothenburg: Akademif�rlaget, 1970. and quality of life in gynecologic oncology patients. 26 Heidegger M. Being and time. Oxford: Basil Cancer Practice 1998; 6: 333 38. Blackwell, 1962. 7 Choen R, Barry D, Clarke J et al. Well being at the 27 Gadamer HG. Philosophical hermeneutics. Berkeley, end of life. Part 1. A research agenda for CA: University of California Press, 1976. psychosocial and spiritual aspects of care from the 28 Kvale S. To validate is the question. 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