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The purpose of this study is to clarify factors related to social support and communication methods that are associated with psychological and social adjustment and to evaluate the nursing support plan for the promotion of social adjustment in laryngectomized patients.
Methods:
We contacted, through a mail survey, perilaryngeal cancer patients who were enrolled in a patient association. This group included 893 of the 1828 patients who agreed to participate in the study. They were registered members of a laryngectomized patient association, “A,” which is a public interest incorporated self-help group. Its objective is to provide training on enunciation techniques and support the rehabilitation of those who have lost their vocal function due to a total laryngectomy. They achieve this by publishing and selling relevant books and wellness equipment nationwide.
The survey items included age, gender, occupation, length of time post-surgery, communication methods, psychological adjustment (the Nottingham Adjustment Scale Japanese Laryngectomy version [NAS-J-L], translated by Yaguchi et al. [2004]), the Health-Related Quality of Life ([HRQOL]; the SF-36v2 Japanese version), informal support (the Medical Outcomes Study Social Support Questionnaire [MOS-SS]) and formal support (the Hospital Patient Satisfaction Questionnaire-25 [HPSQ-25]). Social support, communication methods, and HRQOL were added to the three-tier structural model of psychological adjustment for laryngectomized patients as shown in the previous study, and covariance structure analysis was conducted.
These variables were measured by administering the NAS-J-L, which consists of the following seven subscales and 26 items: (i) six items that assessed the anxiety-depression of patients who had lost their voices (e.g., “have you recently been finding everything getting on top of you?”), hereafter abridged as “anxiety-depression”; (ii) two items that measured the self-esteem of patients (e.g., “I feel totally useless from time to time”), hereafter abridged as “self-esteem”; (iii) three items that measured their self-knowledge regarding the acceptance of their disability (e.g., “I do not need to be anxious about losing my voice”), hereafter abridged as “self-knowledge”; (iv) six items that assessed their positive affirmation regarding the acceptance of their disability (e.g., “I feel that my life is very significant even after losing my voice”), hereafter abridged as “positive affirmation”; (v) four items that measured the attitude toward laryngectomized patients (e.g., “many people with vocal impairments generally consider losing their voices as the worst incident to have happened”), hereafter abridged as “attitude”; (vi) three items that measured patients’ self-efficacy (e.g., “I tend to give up easily”), hereafter abridged as “self-efficacy”; and (vii) two items that measured patients’ locus of control (e.g., “I will make only very little progress in rehabilitation”), hereafter abridged as “locus of control.” The higher the points in each subscale were, the higher the psychological adjustment was. This scale has established reliability (α=.69-.91), validity of the structural concept, and criterion-related validity (Yaguchi et al., 2004). Self-knowledge regarding the acceptance of their disability, which was part of the original scale, had a poor relationship with the structure of psychological adjustment (Yaguchi et al., 2004). Consequently, this was excluded from the NAS-J-L for this study.
In the Social Adjustment Scale, we used three subscales from the SF-36v2 (Japanese version), which uses norm-based scoring: Role-Physical (RP), Role-Emotional (RE), and Social Functioning (SF). We defined the three subscales as “social unification” in this study.
In the Social Support Scale, for informal social support, 20 items from the MOS-SS were used for measurement (four subscales: emotional/informational, tangible, affectionate, and positive social interaction) (Cathy et al., 1991). For formal social support, 10 items from the Hospital Patient Satisfaction Questionnaire-25 (HPSQ-25) were used (two subscales: technical evaluation and human aspects) (Bito et al., 2005).
Age, gender, and the duration of the post-surgery period were surveyed. Communication methods (esophageal speech, electrolarynx, tracheoesophageal speech, writing, and gesturing) and the number of syllables they were able to produce were also investigated. The communication methods were classified into two groups (“esophageal/tracheoesophageal group” and “others group”) for analyzing.
In order to understand the characteristics of the study population, descriptive data were calculated. We then used a psychological adjustment model for laryngectomized patients (Kotake et al., 2008). The model had a three-tier structure: the "Recognition of oneself as voluntary agent" (the latent value for self-efficacy and locus of control) promotes "Acceptance of disability" (the latent value for acceptance of disability and attitude toward laryngectomy), which further promotes "Internal value as human being" (the latent value for anxiety/depression and self-esteem). We analyzed the model by adding two types of support (formal and informal), communication methods, and social unification by covariance structure analysis.
Patients who signed the consent form or returned a completed survey were deemed to have agreed to participate in the survey. The study was reviewed and approved by the A Ethics Committee of University.
Results:
Participants’ mean age was 70.8 years (range: 39-95 years), and 90.7% were male. Regarding the amount of time post-surgery, 562 people (65.8%) indicated that they had undergone the operation 5-20 years ago. The esophageal/tracheoesophageal group comprised 570 people (63.8%), and the others group included 280 people (31.4%).
The structural model was a good fit for the data as demonstrated by the goodness of fit (GFI = .948), adjusted goodness of fit (AGFI = .927), and root mean square error of approximation (RMSEA = .05) values. The model showed that informal/formal support and communication methods had positive influences on the "recognition of oneself as voluntary agent" (path coefficients: .28/.26 and .24 respectively). We demonstrated the possibility that formal/informal support and communication methods enhance the “recognition of oneself as voluntary agent,” promoting psychological adjustment. The “Internal value as human being” component of psychological adjustment promotes social unification. If Japanese laryngectomized individuals receive informal/formal support and esophageal/tracheoesophageal speech, their psychological adjustment improves, promoting better social rehabilitation.
Conclusion:
In this study, we clarified that improved psychological adjustment through social support and communication methods can help enhance Japanese laryngectomized individuals’ social rehabilitation. We suggest that the self-help group activity is important for these individuals, because they need to obtain an alternative voice and informal/formal support. Furthermore, we found that professional support, provided by, for example, nurses and physicians, is important; in particular, human and technical support as provided by the medical team is highly necessary.
Formal support identified in this study included (1) relate to the patients with interest and empathy, (2) demonstrate sufficient understanding and be considerate to patients, (3) communicate to soothe their minds, and (4) give appropriate responses (e.g., nursing, treatment, and respect for patients' opinions).
This study has some limitations. Since the participants have been enrolled as members of “A” patient association for more than 1 year, patients in the acute period were not included. As acute-period patients tend to need much more social support, the association between psychological adjustment and social support for acute-period patients may be different from that for chronic-period patients.
However, we believe that social rehabilitation is possible if the medical team provides the two forms of support adequately for those who have suddenly lost their voice and experienced a changed body image.