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1 Spiritual Distress Experienced by Cancer Patients - Develop a Spiritual Care for Cancer Patients Ya-Lie Ku, RN, Penn State MSN, UIC PhD candidate, Lecturer of Fooyin University Abstract Cancer is the leading number one cause of mortality in Taiwan. A literature review indicates that the majority of cancer patients explore the spiritual needs. However, nurses frequently neglect the patients spiritual status. The problem is that nurses are unfamiliar with assessing and diagnosing spiritual problems, as well as providing spiritual care for cancer patients. This study aims to develop a framework of spiritual care for cancer patients and established defining characteristics, related factors, nursing interventions of spiritual distress for cancer patients, and criteria for predicting the outcomes of spiritual distress for cancer patients. A qualitative study design and purposive sampling procedure was used. Cancer patients were interviewed by using semi-open questions following Wlotersdorff(1994) framework to describe their experiences of themselves, others, and their gods during the illness. This study was approved by a medical center in southern Taiwan and conducted from February to April, Based on the categories of study findings, the investigator developed 27 defining characteristics, 13 related factors, 20 nursing interventions, and 18 outcomes criteria of spiritual distress for cancer patients. Based on the findings, the spiritual distress of cancer patients has defined as a cancer patient has the experiences of negative psychological states, contradictory relationship with health care professionals, God, traditional values, religion, and difficulties to deal with death issues. Besides, the investigator developed a framework of spiritual care for cancer patients and four scales on which defining characteristics, related factors, nursing interventions, and criteria for outcomes of spiritual distress for cancer patients. An upcoming study will evaluate the reliability and validity of these scales for future application to cancer patients. The hope is places on cancer patients who will live meaningfully by strengthening their spiritual care. 關鍵字 : 心靈困擾癌症患者靈性護理照護 1

2 Background Cancer is the leading cause of mortality in Taiwan and the journey along the path from discovering one s ilnes to facing death is very dificult for cancer patients. Therefore, concern for the spirituality of cancer patients is crucial, with the aim of giving their lives meaning during nursing. A literature review discloses that most cancer patients desire spiritual help through the course of their illness. Hu et al 1 identified that 62% of 21 cancer patients wish for spiritual care. Spiritual care is perceived as one main expected type of desirable care among 73 family members of Japanese cancer patients 2. Nevertheless, nurses who are frequently busy performing routine tasks, often neglect the spiritual care of cancer patients. American Cancer Society 3 has reported that 69% of 74 cancer patients received unsatisfactory incomplete spiritual support. Only 33% of 20 French nurses have considered the spiritual needs of 27 cancer patients 4. Moreover, Highfield 5 found that 52% of 40 nurses evaluate the spiritual status of cancer patients incorrectly. More than fifty percent of 166 Finland nurses were less or not willing to provide spiritual support for cancer patients because of their insufficient skills for spiritual care 6. Byrne 7 observed that nurses need guidance in administering spiritual care. The central problem is that nurses are unfamiliar with assessing, diagnosing, intervention, and evaluating spiritual problems of cancer 2

3 patients, since no comprehensive framework of spiritual care for cancer patients was developed, as well as no scales were established on which defining characteristics, related factors, nursing interventions, and criteria for outcomes of spiritual distress for cancer patients. Aim This qualitative study examines the experiences of spiritual suffering of cancer patients, developing a framework of spiritual care for cancer patients and four measurement scales: defining characteristics, related factors, nursing interventions, and criteria for forecasting the outcomes of spiritual distress for cancer patients. Literature Review The literature review covers three areas: definition of spirituality, theories of spirituality, and nursing interventions related to spiritual care. Definition of Spirituality Mao 8 and Liu 9 defined spirituality as individuals searching for purpose and meaning in their lives and interpreting life-value and meaning triumphing over the self. Chao 10 combined the suggestions of various authors to define spirituality as individuals thinking about the meaning of their existence, including their own inner values. Lin 11 proposed that spirituality involves factors beyond psychological status 3

4 that can alow individuals to live comfortably and happily. Byrne s 7 defined spirituality as the search for meaning and Barnum 12 has defined spirituality as searching and expressing their connection to a greater and meaningful context. However, although definitions of spirituality were so plentiful, the topic of spiritual distress is not as popular as spirituality. According to NANDA 13, spiritual distress is the experience of the inability to integrate the meaning and purpose of life by self, others, art, music, literature, nature, or the connection with God. Theories of Spirituality Three theories of spirituality are introduced below. Carson 14 conceived of spiritual dimensions for nursing practice as a circle, with individual spirituality being the inner area of the circle, influencing willpower, emotion, wisdom, and other values in the area further from the center of the circle, which in turn affect physiology, the outermost part of the circle. Hoshiko 15 proposed a theory of spirituality being based on six life relations, namely life-goals, interaction with self and others, environment, past experiences, and future orientation. Wlotersdorff 16 designed a framework that views individual spiritual well being the ability to maintain peaceful relations among the self, others, God, and nature, characterized by forgiveness, love, and trust. 4

5 Spiritual Care of Nursing Interventions Nursing interventions concerned with spiritual care were devised by following thewlotersdorf s 16 framework involving the relationship of the self with self, with others, and with God. 1. Relations with self Carr and Morris 17, Newshan 18, and Yang 19 proposed self- exploration, acceptance, and valued as important elements for strengthening spirituality. Life-reviewing nursing interventions involving active listening 4 through story telling, using metaphor or black humor can enliven the inner world of patients Additionally, meditation and imagination while listening to music can enrich patients spirituality Moreover, therapy such as writing or painting, reading Chinese literature or poems, gardening, and using alternative therapies can aid patients in searching for answers to their questions, maintain their faith, allowing them to discover inner peace Relations with others Yang 19 postulated that relations between nurses and patients might affect patients spirituality and thus suggested company, communication, warmth, empathy, and careful relations as the significant nursing interventions for ensuring spiritual care Besides nurses, family members with traditional cultural values also provide a support system for enriching patient spirituality , particularly for 5

6 meeting the cultural expectations and needs of patients in terminal care 28. Relations with God Patients spirituality can be enhanced by participating in religious activities, such as a Bible study, Buddhist recitation, and prayer One important study sampled 500 open-heart surgery patients who prayed and compared them with a control group of 500 non-praying open-heart surgery patients. The prayer group went home 11% sooner and experienced 12% fewer post-operative complications 30. Taylor 31 examined the feasibility of incorporating prayer in nursing practice, while suggesting areas for assessing and supporting patients in prayer. Nurses can also refer patients to Buddhist masters, pastors, or priests who can design spiritual activities for patients, by cooperating with their spiritual partners or health professionals Methods Study Design This qualitative study developed a framework of spiritual care for cancer patients and established four scales, including defining characteristics, related factors, nursing interventions, and criteria for estimating the outcomes of spiritual distress for cancer patients. Sample Purposive sampling was applied in this study. The subjects had cancer for at least 6

7 half a year, clear consciousness, stable vital signs, age of over 20 years old, proficiency in Mandarin or Taiwanese, and willingness to participate in this study. Procedure This study was approved by a southern Taiwanese medical center, and data were gathered in chemotherapy clinics weekly from February to April, A guide for interviewing was developed by three investigatorsbased on Wlotersdorf s 16 framework. The patients were interviewed with semi-open questions and asked to describe experiences of themselves, others, and gods during their illness. Data Analysis Three scales were established following the instructions of Waltz, Strickland, and Lenz 28. First, content analysis was based on Wlotersdorf s 16 framework of the patients relations with themselves, with others, and with gods as three units of analysis. Second, under each unit, the investigator developed a scheme for an explicit classification of the content and coding and scoring instruction. Third, formal data analysis was conducted as the inter-rater reliability of coding skills between two researchers approached.80. Data collection and analysis were discontinued, since 20 interviews produced more than sufficient data for analysis. Findings The demographics of the 20 patients were as follows. The subjects were 7

8 diagnosed with lung cancer (30%), breast cancer (30%), colon cancer (10%), ovary cancer (10%), and others, respectively (5%). The subject ages ranged from 28 to 74 years with the majority (75%). The sample was 75% female; 90% married; 65% educated to at least high school level; 80% economically stable; 35% Buddhist, 25% atheist, 20% Taoist, 10% Christian, and others, respectively (5%). Except for one, all cancer patients were taken cared for by their family members. The demographics of 20 cancer patients are presented in Table 1. Table 1 Demographics Characteristics of Cancer Patients (N=20) Characteristics N Percent Diagnosis Lung cancer Breast cancer Colon cancer Ovary cancer Others Age Sex Female Male Married Status Married Single Education Elementary % 30% 10% 10% 20% 5% 20% 25% 30% 15% 5% 75% 25% 90% 10% 35% 8

9 Vocational school High school College Incomes High Middle Low Religion Buddhist Taoist Christian Catholics Yi guan dao Atheist Caregivers Parents Couples Children Friends Self Nurse aids (15%) 9(45%) 2(10%) 1(5%) 4(20%) 1(5%) 35% 15% 15% 20% 60% 20% 35% 20% 10% 5% 5% 25% 15% 45% 10% 5% 20% 5% The investigation identified several categories for describing spiritual experiences, in three main areas: (1) In relations with self-two subcategories were labeled as emotion and thoughts. For emotion, shock, denial, resentment, regret, worry, fear, suffering, sorrow, loneliness, and numbness were identified. For thoughts, fatalism, pessimism, and resignation were found. (2) In relations with others-distrust, disobedience, dissatisfaction, and non-forgiveness were found. (3) In relations with god-negative relationships with god involved disrespect toward god and the feeling that god is powerless. Other subcategories were labeled as traditional values, religion, 9

10 and death. Examples of these included the feeling of being unprotected from one s ancestors, feeling sinfulness, insecurity, inability to discuss death, worry about the death process, the ritual of death, and the destination of the spirit after death. Based on those categories, the investigator developed defining characteristics of spiritual distress for cancer patients as shown in Table 2. Table2 Defining Characteristics of Spiritual Distress for Cancer Patients Unit Relations with Relations with Relations with God self others Categories Emotion shock denial resentment regret worry fear suffering sorrow loneliness numbness distrust disobedience dissatisfaction non-forgiveness God disrespect toward god feeling that god is powerless Traditional Values being unprotected from one s ancestors Religion sinfulness insecurity being governed by religious beliefs Thoughts fatalism pessimism resignation Death inability to discuss death worry about death process worry about the ritual of death worry about the destination of the spirit after death Except for defining characteristics, factors related to spiritual distress for cancer patients were also identified. (1) Negative relationships with self included negative past experiences and physical suffering. (2) Negative relationship with others 10

11 involved miscommunication, irresponsibility, lack of empathy, and lack of caring from health care professionals. (3) Negative relationship with god included unawareness of god and broken relationship with god, and for traditional values and religions, transmigration, inability to perform religious rituals, lack of religious decoration, loss of status and involvement in religious institutions were identified. Based on those categories, the investigator developed factors related to spiritual distress for cancer patients as shown in Table 3. Table 3 Factors related to Spiritual Distress for Cancer Patients Unit Relations Relations with Relations with God with self others Categories negative past experiences physical suffering miscommunication irresponsibility lack of empathy lack of caring God unawareness of god broken relationship with god Traditional Values transmigration Religion inability to perform religious rituals lacking of religious decoration loss of status in religious institutions lack of involvement in religious institutions To help cancer patients compensate for defining characteristics as well as factors related to spiritual distress, nursing interventions based on research findings and literature were created with reference to four themes: rebuilding life values, rebuilding value placed in relationships with others, improving the relationship with god, and 11

12 building courage to face death. Based on each theme, the nursing goals of caring for spiritual distress for cancer patients were designed and five nursing interventions under each goal were also established. Four themes and nursing interventions to alleviate spiritual distress of cancer patients are presented in Table 4. Table4 Nursing Interventions to Alleviate Spiritual Distress of Cancer Patients Themes rebuilding life values rebuilding value placed in relationships with others improving the relationship with god building courage to face death Interventions 1. lead life review with funny stories 1. accompany with 2. therapy touch 1. spiritual ministers visited 1. talk lost and grief emotion by humor 2. read spiritual 2. express 2. listen and accept patients exploration 3. draw to express inner world 4. read inspired articles 5. grow a vital plant 3. share with same experiencing 4. discuss the daily life with family 5. arrange leisure activities with family articles 3. broadcast spiritual music 4. offer spiritual gifts 5. contact with spiritual friends thoughts of life and death 3. assist unfinished will 4. discuss the death rite 5. write the last statement Additionally, three outcome criteria were established. (1) Positive relations with self were exemplified by personal sore point, emotional stability, feeling of contentment, loving self, self worth, optimism, and feeling that life is meaningful. (2) Positive relations with others included forgiveness of others, trust of health professionals, obedience to the instructions of health professionals and acceptance of 12

13 care, attendance of social activities, getting along with others, and caring for others. (3) In good relations with god: attendance of religious activities, getting along with religious representatives and religious partners, releasing feelings of sinfulness, obtaining security, rebuilding a good relationship with god, and understanding the destination of the spirit after death were listed. Outcomes criteria of spiritual distress for cancer patients are presented in Table 5. Table5 Outcome Criteria of Spiritual Distress for Cancer Patients Unit Positive relations with Positive relations with A good relations with Self Others God Categories personal sore point exemplified forgive others trust health professionals attend religious activities get along with religious emotional stability accept care and obey the representatives and religious partners feeling of contentment loving self instructions of health professionals release sinful feelings self worth attend social activities obtain security optimism feeling that life is meaningful Discussion and Conclusion get along with others care others rebuild a good relationships with god understand destination of the spirit after death FollowingWlotersdorf s 16 framework which included the patients relationships with themselves, with others, and with gods, this study has asserted that negative past experiences and physical suffering such as losing appetite and insomnia may 13

14 influence cancer patients spirituality in terms of negative emotions and thoughts. Additionally, miscommunication between cancer patients and health care professionals, as well as irresponsibility, lack of empathy, and caring from health care profesionals may influence patients spirituality in terms of trust of and obedience to health care professionals. Alternatively, the patients may not be satisfied with the health care and even cannot forgive how health care professionals have treated them. Moreover, cancer patients spiritual distress may originate in disrespect for God, or feeling God is powerless because they are unaware of God or have a broken relationship with Him. Some patients may feel themselves unprotected from ancestors because of traditional transmigration beliefs, while others have feelings of sinfulness, insecurity, or being governed by religious beliefs since they cannot wear religious decoration or perform religious activities, or have lost involvement and status in religious institutions. Finally, cancer patients have difficulties discussing death and worry about the process and ritual of death, as well as being anxious about where their spirits are going to after death. In conclusion, this study has defined spiritual distress for cancer patients as meaning that a cancer patient experiences negative psychological states, contradictory relationships with health care professionals, God, traditional values, religion, and has difficulties dealing with death issues. The definition of this investigation differed from 14

15 the literature, which emphasized individual spirituality in searching for existing values and meaning. Additionally, Carson 14 stated an individual s emotion and physiology would be influenced by his spirituality. However, spiritual distress for cancer patients in this study was interpreted as psychological states affected by physical responses and social experiences. The definition in this study is similar to Hoshiko s 15 and Wlotersdorf s 16 that spirituality is based on interaction with self, others, and past experiences as well as maintaining a peaceful relationship among the self, others, and God. Except for the definition, the other categories were identified primarily to include relationships with health care professionals; however, the literature has emphasized individual spirituality in terms of relationships with family members or friends. Cancer patients care greatly about health care profesionals responsibility, empathy, and caring. This care influences their communication, trust, satisfaction, and compliance with those professionals. In addition, the god categories for cancer patients were identified as the process of knowing and maintaining a relationship with God, and the possibility of attending religious activities. Compared with previous literature, the significantly different results of this study include the awareness that traditional values like transmigration and death issues have been identified as amounting to spiritual distress for cancer patients. 15

16 Overall, based on the research findings, the investigator developed a framework of spiritual distress care for cancer patients (Figure 1). For future areas of research, Narayanasamy 32 and Skoberne 26 considered spiritual care to be an essential component integral to patient care. Parish patients regarded their nurses as useful, meaningful, and effective professionals because the nurses integrated spirituality with health in their nursing interventions 33. To assist developing spiritual care in clinical units, based on the framework, the investigator designed four scales to measure defining characteristics, related factors, nursing interventions, and criteria for outcomes of spiritual distress for cancer patients undergoing chemotherapy. A further study will evaluate the reliability and validity of these scales for application to cancer patients. Hopefully cancer patients can live happily and meaningfully by strengthening their spiritual care; and in turn, they can perceive nurses as useful, meaningful, and effective professionals for their spiritual care. Acknowledgement The author thanks the Nursing Department of Kaohsiung Chang Gung Memorial Hospital for approving and supporting this study. Ywi Chi Kan and Tsay-Yi Au are appreciated for their advices of data analysis. Special thanks are given to the 20 cancer patients of Chemotherapy room where the study subjects were recruited, under the auspices of the Kaohsiung Chang Gung Memorial Hospital in Taiwan. 16

17 References 1. Hu, W. Y., Chiu, T.Y., Bhikkhu, H.M., Chen, C.Y., & Chen, Y.C. (1999). Spiritual Needs of Terminal Cancer Patients from the Viewpoint of Medical Professionals. China Journal of Family Medicine, 3(1): Ogasawara, C., Kume, Y., & Andou, M. (2003). Family satisfaction with perception of and barriers to terminal care in Japan. Oncology Nursing Forum, 30(5), American Cancer Society(1994). Cancer facts and figures. Atlanta, GA: American Cancer Society. 4. Kohler, C. (1999).Nursing diagnosis of spiritual distres : a necesary revaluation. Recherche en Soins Infirmiers, 56, Highfield, M. F. (1992). Spiritual health of oncology patients: nurse and patient perspectives. Cancer Nursing, 15(1), Kuuppelomaki, M. (2002). Spiritual support for families of patients with cancer: a pilot study of nursing staff assessments. Cancer Nursing, 25(3), Byrne, M. (2002). Spirituality in palliative care: what language do we need? International Journal of Palliative Care, 8(2), Mao, H. C. (1997). Recognition of Spiritual Needs of the Patients. Formosan Journal of Medicine, 1(5), Liu, S. J. (1999). The Spiritual Care of the Elderly. Journal of Nursing, 46(4), Chao, C. S. (1998). Psychiatric Mental Health Nursing and Spiritual Care. Journal of Nursing, 45(1), Lin, S. (2000). Spiritual Care and Human Caring. Journal of Veteran Nursing, 17(2), Barnum, B. S. (2003). Spirituality in Nursing: from Traditional to New Age. New York: Springer Publishing Company. 17

18 13. Kao, C. H. (2003). NANDA Nursing Diagnosis: Definition & Classification Taipei: Farseeing. 14. Carson, V. B. (1989). Spiritual Dimensions of Nursing Practice. Philadelphia: Saunders Company. 15. Hoshiko, B. R. (1993). Nursing Responses to Spirituality: Kent State University School of Nursing. In JA. Shelly (ed.). Teaching Spiritual Care. Wisconsin: Nursing Christian Fellowship. 16. Woltersdorff, N. (1994). For justice in shalom. In Bolton, WG, Kennedy, TD, & Verhey, A (eds.). From Christ to the World: Introductory readings in Christian ethics. Michigan: Wm. B, Eerdmans Publishing Co. 17. Carr, E. W., & Morris, T. (1996). Spirituality and patients with advanced cancer: a social work response. Journal of Psychosocial Oncology, 14(1), Newshan, G. (1998). Transcending the physical: spiritual aspects of pain in patients with HIV and/or cancer. Journal of Advanced Nursing, 28(6), Yang, K. P. (1998). Spiritual Care in Nursing Practice. Journal of Nursing, 45(3), Lin, G. C., & Chiou, Y. F. (1996). Spiritual care of terminal cancer patients. Nursing Images, 6(2), Lackey, N. R., Gates, M. F., & Brown, G..(2001). African American women s experiences with the initial diagnosis, and treatment of breast cancer. Oncology Nursing Forum, 28(3), Leu, S. C. (2000). Art therapy and spiritual care. Taiwan Journal of Hospice Palliative Care, 5(2), Brown-Saltzman, K. (1997). Replenishing the spirit by meditative prayer and guided imagery. Seminars in Oncology Nursing, 13(4),

19 24. Taylor, E. J. (2001). Spirituality, culture, and cancer care. Seminars in Oncology Nursing, 17(3), Sheu, L. A. (2000). My opinions of spiritual care. Taiwan Journal of Hospice Palliative Care, 5(2), Skoberne, M. (2002). Spirituality and spiritual health. Obzornik Zdravstvene Nege, 36(1), Burhansstipanov, L, & Hollow, W. (2001). Native American cultural aspects of oncology nursing care. Seminars in Oncology Nursing, 17(3), Waltz, C. F., Strickland, O. L., & Lenz, E. R. (1991). Measurement in Nursing Research. Philadelphia: F.A. Davis Company. 29. Musick, M. A., Koenig, H. G.., Hays, J. C., & Cohen, H. J. (1998). Religious activity and depression among community-dwelling elderly persons with cancer: the moderating effect of race. Psychological Sciences & Social Sciences, 53B(4), S Brewes, R. (2002). The Scientific Side of Spirituality in Nursing. RN, 65(12), Taylor, E. J. (2003).Prayer s clinical isues and implications. Holistic Nursing Practice, 17(4), Narayanasamy, A. (2002). Spiritual coping mechanisms in chronically ill patients. British Journal of Nursing, 11(22), Wallace, D. C., Tuck, I., Boland, C. S., & Witucki, J. M. (2002). Client perceptions of parish nursing. Public Health Nursing, 19(2),

20 癌症患者經歷的靈性困擾 - 發展癌症患者的靈性照護 顧雅利, 賓州州立大學護理學碩士, 伊利諾大學博士候選人 輔英科技大學護理系講師 摘 要 癌症一直佔國人十大死因之首位, 文獻回顧發現大部份癌症患者均表示其有靈性照護之需求, 但是忙碌的醫護人員常常容易忽略癌症患者的靈性照顧, 問題在於護理人員不熟悉靈性的評估及診斷, 和提供癌症患者的靈性照護 本研究計畫的目地乃在發展一個癌症患者靈性照護的模式, 並建立癌症患者心靈困擾的定義性特徵 相關因素 護理措施, 及成果指標等量表 本質性研究設計採立意取樣, 研究者以半開放性問題的方式, 依據 Wlotersdorff(1994) 的架構, 引導個案描述自己於罹患癌症期間本身, 與他人, 和信仰的神之間的經歷 此研究自 92 年 2 至 4 月期間執行於南部某醫學中心的門診化療室 依據研究發現的分類, 研究者發展出癌症患者心靈困擾的 27 項定義特徵,13 項相關因素,20 項護理措施, 及 18 項成果指標 根據這些結果, 此研究將靈性困擾定義為一位癌症患者經歷負向的心理狀況, 和健康照護者 神 傳統價值 宗教信仰有矛盾關係, 及很難處理死亡相關議題 此外, 研究者也發展一個癌症患者靈性照護的模式, 並建立定義特徵, 相關因素, 護理措施, 及成果指標 4 個量表 未來研究即測試 4 個量表的信效度, 並應用於癌症患者身上, 希望癌症患者經由加強其靈性照護, 使其活的更有意義 Keyeords:spiritual distress, cancer patients, spiritual nursing care 20