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

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

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.

Figures and Tables

Fig. 1

Model of Experiences of Spouses of Patients with Hematologic Malignancies.

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Table 1

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

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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

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