Experiences of Spouses of Patients with Hematologic Malignancies: Finding a Way to Get Out of the Endless Tunnel

Youngshin Lee; Youngran Tak

doi:10.5388/aon.2016.16.1.46

Journal List > Asian Oncol Nurs > v.16(1) > 1081886

Go to TopGo to Top Go to BottomGo to Bottom

TOOLS

Lee and Tak: Experiences of Spouses of Patients with Hematologic Malignancies: Finding a Way to Get Out of the Endless Tunnel

Original Article

Asian Oncology Nursing 2016; 16(1): 46-57.

Published online: 31 March 2016

DOI: https://doi.org/10.5388/aon.2016.16.1.46

Experiences of Spouses of Patients with Hematologic Malignancies: Finding a Way to Get Out of the Endless Tunnel

Youngshin Lee¹, Youngran Tak²

¹Department of Nursing, Asan Medical Center, Seoul, Korea.

²College of Nursing, Hanyang University, Seoul, Korea.

Address reprint requests to: Lee, Youngshin. Asan Medical Center, 88 Olympic-ro 43gil, Songpa-gu, Seoul 05505, Korea. Fax: +82-2-3010-5595, Tel: +82-2-3010-6892, lysinkorea@gmail.com

Received 22 December 2015 Revised 17 March 2016 Accepted 24 March 2016

(open-access):

This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/3.0/) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract

Purpose

This study was to explore experiences of spouses with hematologic malignancy patients. The main question was "What are experiences of spouses whose husband or wife was diagnosed with hematologic malignancy?".

Methods

Participants for this study were 12 spouses. Data were collected through individual in-depth unstructured interviews with participants from Feb, 2014 to June, 2015 and analyzed using Strauss and Corbin's grounded theory methodology

Results

A core category was 'Finding a way to get out of the endless tunnel'. The process is 1) Shock, 2) Confusion, 3) Struggle, 4) Living with the disease, 5) Maturation within the disease. The contextual conditions were 'Responsibility for patient', 'Fear of spouseless future'. The intervening conditions were 'Having support', 'Having closer marital relationship', Keeping patient's disease repressed. Finally, Participants reached 'Circling around the disease', 'Finding personal growth'.

Conclusion

The results of this study could help understand the experiences of spouses of hematologic malignancy patients. The emerged process of their experiences gives a framework to develop strategies to help spouses to overcome disease.

Keywords: Hematologic Neoplasms, Spouses, Life Experiences, Grounded theory

Figures and Tables

Fig. 1

Model of Experiences of Spouses of Patients with Hematologic Malignancies.

Table 1

Concepts, Categories and Paradigms of Spouse's Experiences of Hematologic Malignancy Patients

Concepts	Categories	Paradigm
Unexpected diagnosis, denial, finding several medical centers	Escaping from unreliable situation	Causal conditions
Anxiety, despair, falling into a abyss, feeling that the sky is falling, feeling that one is hemmed in all sides by walls, realizing severity of disease	Falling into despair
Lost one's way in front of disease, giving up hope, the unexpected experiences, starting treatment without preparation, arrange the circumstances instead of patient, reproaching patient, getting information about disease and treatment modalities	Throwing to the caregiver position
Doubt and anxiety about disease progression, anger about unfair situation, unstable emotion, uncertainty, pressure, desolate life after termination of treatment, finding the cause of disease, knowing hematologic malignancy from other malignancies, embarrassed by treatments exceed expectation, observation of other patients' treat, observation of other patients' treatment process	Confronting the endless tunnel	Phenomenon
Getting a strength from health care professionals' support, Trusting health care professionals, Gratitude for health care professionals, Support from family members, getting power from family members' support, having one's feeling hurt from family members' response, economic difficulties, finding social support from family members, friends, and social welfare, finding social support from family members, friends, and social welfare, getting information from other patient's experiences, making a partner, taking a load off with patients	Having support	Intervening conditions
Avoiding other's concern, keeping patient's disease secret, feeling irritabled about words of comfort, feeling being a monkey in a zoo	Keeping patient's disease repressed
Not to express affection harmful to patient's health, concentration on their relationship, ambivalence for sexual life making a deep relationship with partner, having a respect for patient	Having closer marital relationship
Having difficulties in peace. keeping feelings bottled up, feeling pressure to filling the vacancy of patient, sense of alienation, riding a roller coast of emotion	Continual discomfort	Contextual conditions
Feeling guilty of unknowing a patient's health problem, feeling guilty of getting being insensible to severity of disease, being distressed about being sly, compensating for patient's indebtedness	Responsibility for patient
Fear of spouseless future, thought of patient's death, concern of children's harms, disadvantages and burdens, sorriness about children	Fear of spouseless future
Caution oneself against excessive information, filtering information, feeling uncomfortable about precise information, blocking, description of patient's condition, protection against unhealthy environment, putting patient's safety first.	Being in gatekeeper of patient	Actions/Interactions
Lethargy, isolation, stuffiness, stress, ambivalence, burden, ungovernability, studying patient's face, uncomfortable motion, having no time to spare	Ungovernability of caregiver's role
Accepting the fate. trying to accept the present situation positively preparing for extended treatment. modifying future plan. making a compromise with principles putting the present first.doing one's best for patient, trying to make patient comfortable, trying to make proper environment for patient's treatment, trying to encourage patient trying to elevate patient's mood, conceal one's own feeling	Making the optimal situation
Gratitude for preciousness of spouse, gratitude for getting to know daily usual life. gratitude for patient's existence, gratitude for endurance of patient, finding a positive aspect of present condition, mind control of having hope	Gratitude for present condition
Getting neglectful for primary family, losing contact with friends making new relationship with other patients and caregivers	Making new relationship
Trying to find exit in front of realities, scope of movement depending on patient's condition stand by patient for all day. feeling about patient getting out of sight. circling around the disease	Circling around the disease	Consequences
Have a responsibility for getting health. have a another attitude to life, have a mature sense on life, realize something beyond sight empty one's mind, try to have a locus of control, being afraid of staying alive realize that disease is not within human power realize that love and concern influence the result of treatment	Finding personal growth	Consequences

References

1. Hall A, Lynagh M, Bryant J, Sanson-Fisher R. Supportive care needs of hematological cancer survivors: a critical review of the literature. Crit Rev Oncol Hematol. 2013; 88:102–116.

2. The Korean Society of Hematology. Hematology. 2nd ed. Seoul: Bubmoon education;2011.

3. Oechsle K, Aslan Z, Suesse Y, Jensen W, Bokemeyer C, de Wit M. Multimodal exercise training during myeloablative chemotherapy: a prospective randomized pilot trial. Support Care Cancer. 2014; 22(1):63–69.

4. Annual report of cancer statistics in Korea in 2012. Accessed May 17, 2015. http://ncc.re.kr.

5. Jung KW, Won YJ, Kong HJ, Oh CM, Cho HS, Lee DH, et al. Cancer Statistics in Korea: incidence, mortality, survival, and prevalence in 2012. Cancer Res Treat. 2015; 47(2):127–141.

6. Manne S. Cancer in the Marital Context: a review of the literature. Cancer Invest. 1998; 16(3):188–202.

7. Clark PG, Rochon E, Brethwaite D, Edmiston KK. Screening for psychological and physical distress in a cancer inpatient treatment setting: a pilot study. Psychooncology. 2011; 20(6):664–668.

8. Kim Y, Given BA. Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer. 2008; 112:11 suppl. 2556–2568.

9. Li Q, Loke AY. The positive aspects of caregiving for cancer patients: a critical review of the literature and directions for future research. Psychooncology. 2013; 22(11):2399–2407.

10. Choi ES, Kim KS. Experiences of family caregivers of patients with terminal cancer. J Korean Acad Nurs. 2012; 42(2):280–290.

11. Kwon EJ, Yi MS. Husbands' caring experiences for women with breast cancer in Korea. Asian Oncol Nurs. 2013; 13(1):18–27.

12. Papastavrou E, Charalambous A, Tsangari H, Karayiannis G. The burdensome and depressive experience of caring: what cancer, schizophrenia, and alzheimer's disease caregivers have in common. Cancer Nurs. 2012; 35(3):187–194.

13. Williams AL, Bakitas M. Cancer family caregivers: a new direction for interventions. J Palliat Med. 2012; 15(7):775–783.

14. Romito F, Goldzweig G, Cormio C, Hagedoorn M, Andersen BL. Informal caregiving for cancer patients. Cancer. 2013; 119:Suppl 11. 2160–2169.

15. Northouse LL, Katapodi MC, Song L, Zhang L, Mood DW. Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA Cancer J Clin. 2010; 60(5):317–339.

16. Fletcher BS, Miaskowski C, Given B, Schumacher K. The cancer family caregiving experience: an updated and expanded conceptual model. Eur J Oncol Nurs. 2012; 16(4):387–398.

17. Strauss A, Corbin J. Basics of qualitative research. Grounded theory and techniques. 2nd ed. CA: Sage;1998.

18. Holtslander LF, Duggleby WD. The hope experience of older bereaved women who cared for a spouse with terminal cancer. Qual Health Res. 2009; 19(3):388–400.

19. Li QP, Mak YW, Loke AY. Spouses' experience of caregiving for cancer patients: a literature review. Int Nurs Rev. 2013; 60(2):178–187.

20. Houldin AD. A qualitative study of caregivers' experiences with newly diagnosed advanced colorectal cancer. Oncol Nurs Forum. 2007; 34(2):323–330.

21. Sercekus P, Besen DB, Gunusen NP, Edeer AD. Experiences of family caregivers of cancer patients receiving chemotherapy. Asian Pac J Cancer Prev. 2014; 15(12):5063–5069.

22. Lopez V, Copp G, Molassiotis A. Male caregivers of patients with breast and gynecologic cancer: experiences from caring for their spouses and partners. Cancer Nurs. 2012; 35(6):402–410.

23. Janze A, Henriksson A. Preparing for palliative caregiving as a transition in the awareness of death: family carer experiences. Int J Palliat Nurs. 2014; 20(10):494–501.

24. Bastawrous M. Caregiver burden-a critical discussion. Int J Nurs Stud. 2013; 50(3):431–441.

25. Kim Y, Schulz R, Carver CS. Benefit-finding in the cancer caregiving experience. Psychosom Med. 2007; 69(3):283–291.

26. Zwahlen D, Hagenbuch N, Carley MI, Jenewein J, Buchi S. Posttraumatic growth in cancer patients and partners-effects of role, gender and the dyad on couples' posttraumatic growth experience. Psychooncology. 2010; 19(1):12–20.

27. Dunkin JJ, Anderson-Hanley C. Dementia caregiver burden: a review of the literature and guidelines for assessment and intervention. Neurology. 1998; 51:1 Suppl 1. S53–S60. discussion S5-7

TOOLS

Similar articles