Psycho-Oncology Psycho-Oncology 23: 569–577 (2014) Published online 8 January 2014 in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.3458

Unmet supportive care needs and characteristics of family caregivers of patients with oral cancer after surgery Shu-Ching Chen1,6*, Yeur-Hur Lai2, Chun-Ta Liao3,4,6, Bing-Shen Huang4,5,6, Chien-Yu Lin4,5,6, Kang-Hsing Fan4,5,6 and Joseph Tung-Chien Chang4,5,6 1

Department of Nursing, Chang Gung University of Science and Technology, Taoyuan, Taiwan School of Nursing, College of Medicine, National Taiwan University, Taipei, Taiwan 3 Department of Otorhinolaryngology, Head and Neck Surgery, Chang Gung Medical Foundation, Chang Gung Memorial Hospital at LinKou, Taoyuan, Taiwan 4 College of Medicine, Chang Gung University, Taoyuan, Taiwan 5 Department of Radiation Oncology, Chang Gung Medical Foundation, Chang Gung Memorial Hospital at LinKou, Taoyuan, Taiwan 6 Head and Neck Oncology Group, Chang Gung Medical Foundation, Chang Gung Memorial Hospital at LinKou, Taoyuan, Taiwan 2

*Correspondence to: Department of Nursing, Chang Gung University of Science and Technology, 261, Wen-Hua 1st Road, Kweishan, Taoyuan, 333, Taiwan. E-mail: shuching@gw. cgust.edu.tw

Received: 6 March 2013 Revised: 30 October 2013 Accepted: 1 November 2013

Abstract Objective: The aim of this study was to identify factors associated with unmet supportive care needs in family caregivers of patients with oral cancer after surgery. Methods: In a cross-sectional study, we recruited patient–family caregiver dyads from the otolaryngology head and neck surgery wards of a medical center in northern Taiwan. Patients were assessed using a set of structured questionnaires to measure symptom distress, sleep quality, and depression. Social support and supportive care needs of family caregivers were measured. Results: Of the 102 dyads surveyed, needs for supportive care in information domain and healthcare professional/healthcare services domain were highest. Patients with more severe symptoms and family caregivers who received less social support from family were associated with greater overall unmet supportive care needs. Conclusions: Family caregivers report the need for more information and healthcare services after a family member has had oral surgery. Caregiving training programs should be developed for caregivers on the basis of meeting reported needs. Copyright © 2014 John Wiley & Sons, Ltd.

Introduction Supportive care is defined as ‘care given to improve the quality of life of patients who have a serious or life-threatening disease. The goal of supportive care is to prevent or treat as early as possible the symptoms of a disease, side effects caused by treatment of a disease, and psychological, social, and spiritual problems related to a disease or its treatment’ [1]. Supportive care given to caregivers is designed to help them cope while caring for a family member with cancer [1]. Many family caregivers experience unmet supportive care needs after a family member has had cancer treatment [2–4]. Cancer is a progressive and chronic disease that profoundly impacts the patient’s physical and psychosocial well-being and that of the family. In Taiwan, oral cancer is the fourth leading cause of death among men [5], and 55% of these men have advanced disease at diagnosis [6]. Radical excision and reconstruction are the treatments of choice [7]. Family caregivers often face complex caregiving tasks after their family member’s surgery. Unmet supportive care needs may have negative consequences for caregivers, Copyright © 2014 John Wiley & Sons, Ltd.

including emotional distress [8], declines in physical wellbeing, and reduced quality of life [4], and may interfere with the way family caregivers handle caregiving. Previous studies found that unmet needs in caregivers of patients with cancer could range from 30% to 56% [2–4]. In Taiwan, patients with oral cancer tend to have low education level, low occupational and social classes, and low income [9]. Most patients with oral cancer are men [6] and the primary breadwinners. Family caregivers take on heavy responsibilities after a patient is treated for oral cancer. Unmet supportive care needs of family caregivers of cancer patients are associated with several characteristics. Anxiety and depression among patients are significant predictors of caregivers’ unmet needs [2–4]. Good supportive services help caregivers use community services more effectively and manage stress [3]. Family members have fewer unmet needs when caregiving interferes less in their own activities and requires less involvement, and when they are physically healthy and have social support [10]. A qualitative study reported that a caregiver’s lack of patient-care knowledge and limited understanding of the health system were associated with greater supportive care needs [11].

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Oral cancer differs from other cancers because aggressive treatment can lead to problems in vital oral functions [12,13]. Caregivers of patients with oral cancer have high overall supportive care needs, especially in information needs. Unmet care needs increase the burden on caregivers [14]. The psychological effects from radical and reconstructive surgery have been identified [15–17]; however, patients with excessive distress may also require substantial support, such as assistance with activities of daily living, illness management, and family responsibilities, all of which can overwhelm family caregivers, creating the need for their own supportive care. This goal of this study was to identify the unmet supportive care needs of caregivers of patients with oral cancer after surgery and the associated sociodemographic, patient health, treatment, and psychosocial factors. We hypothesize that patients with more serious symptoms, depression, and sleep disturbances, and family caregivers with less social support from other family members or healthcare professionals are associated with greater unmet supportive care needs.

Methods Participants and design The study used a cross-sectional survey with self-administered questionnaires. A convenience sample of potential participants recruited from the otolaryngology head and neck surgery wards of a medical center in northern Taiwan was identified. To be eligible for the study, all patients had to be newly diagnosed with surgery for oral cancer, 20 years of age or older, aware of their cancer diagnosis, and able to understand, read, write, and provide written informed consent in Mandarin or Taiwanese. Eligible caregivers had to be at least 20 years old, provide uncompensated care or assistance to a patient, be identified by the patient as a primary family caregiver, and be able to speak, read, write, and give informed consent in Mandarin or Taiwanese. In Taiwan, family caregivers must assist in all aspects of providing personal care to patients during hospitalization, including feeding, toileting, dressing, walking, some food preparation, and attending medical appointments.

Data collection procedures The study was approved by the medical center’s institutional review board. All participants provided written informed consent. Participants received a complete explanation of the purposes and procedures of the study provided by trained research assistants. Patients and caregivers were approached simultaneously to complete their surveys. To minimize the number of patients leaving the study, research assistants helped patients Copyright © 2014 John Wiley & Sons, Ltd.

and caregivers complete the questionnaires, spending 20–30 min at the bedside.

Measures Caregivers completed the following questionnaires. Partners and caregivers supportive care needs survey

The partners and caregivers supportive care needs survey [8] assesses unmet supportive care needs of family caregivers of cancer patients throughout the illness. The partners and caregivers supportive care needs survey consists of 44 items measuring six subscales: information needs (six items), psychological/emotional needs (15 items), daily living needs (four items), legal/financial needs (three items), healthcare professional/healthcare service needs (11 items), communication and interpersonal needs (four items), and other needs (one item). The respondents rate their needs from 1 (no need) to 5 (high need for help). The summed scores of each domain and the global scale are converted into standardized scores ranging from 0 to 100, with higher scores representing more unmet needs. Individual items for ‘no need’, ‘needs already satisfied’, and ‘some need’ indicated that the need was met, whereas individual items for ‘low needs’ and ‘moderate or high needs’ indicated unmet needs [8]. The Taiwanese version of the scale has acceptable psychometric properties in a previous study [18]. In the present study, internal consistency of the global scale was 0.82. Social Support Scale modified

The Taiwanese version of the Social Support Scale modified [19] is a 32-item self-report inventory modified from the Social Support Scale [20] and designed to assess perceived availability of support from family members and healthcare professionals in medical situations. It consists of two subscales: support from family (16 items) and support from healthcare professionals (16 items). Each subscale contains four domains of social support: emotional (four items), informational (four items), appraisal (four items), and practical (four items) support. Ratings, ranging from 0 (not at all) to 3 (always), are summed to generate total scores [20]. The scale has acceptable psychometric properties in caregivers’ related studies in Taiwan [19,21]. In the present study, the Cronbach’s alpha was 0.95. Demographic and care characteristics of family caregivers

Data collected for caregivers consisted of age, sex, occupation, educational level, religion, relationship to the patient, whether the caregiver lived with patient, whether caregiving was shared with other family members, and amount of time spent in caregiving. Patients completed the following questionnaires. Psycho-Oncology 23: 569–577 (2014) DOI: 10.1002/pon

Unmet supportive care needs in family caregivers

Symptom Distress Scale modified for head and neck cancer

Symptom distress was measured with the Taiwanese version of the Symptom Distress Scale modified for head and neck cancer (SDS-mhn), a modification of the Symptom Distress Scale [22]. The SDS-mhn consists of 24 items providing scores related to symptom distress after surgery for oral cancer. Item ratings range from 1 (no distress at all) to 5 (maximum distress). The SDS-mhn has good validity and reliability, and the scale is considered to be a reliable measure for assessing symptoms in oral cancer patients in previous, related studies [23,24]. In this study, Cronbach’s alpha was 0.82 for the scale. The Pittsburgh Sleep Quality Index

The Pittsburgh Sleep Quality Index [25], a reliable measure of sleep disturbance, was used to assess patients’ sleep quality. Item ratings ranged from 0 (high quality of sleep) to 3 (low quality of sleep), with higher scores indicating lower quality of sleep. Global scores of 5 or above indicate low-quality sleep [25]. The Taiwanese version of the Pittsburgh Sleep Quality Index has been validated in Taiwanese cancer patients [26,27]. The scale has good construct validity and discriminant validity for cancer patients [28]. Cronbach’s alpha in this study was 0.96. Hospital Anxiety and Depression Scale—depression subscale

The Hospital Anxiety and Depression Scale—depression subscale was used to assess depression. It is composed of seven items, with a total score on the depression subscale ranging between 0 and 21. Scores of 0–7 indicate the absence of depression, scores of 8–10 indicate borderline depression, and scores of 11–21 indicate clinical depression [29]. The scale has been translated and validated in Taiwanese; overall reliability and validity were satisfactory [30,31]. Cronbach’s alpha was 0.80. Demographic and clinical characteristics of patients

We collected data on age, sex, occupation, marital status, educational level, and religion for all patients. Cancer stage, cancer location within the mouth, type of treatment, and performance status were recorded. The Karnofsky Performance Status Scale, with scores ranging from 0 (death) to 100 (normal function) [32], is widely used to assess physical function in cancer patients [33,34]. The inter-rater reliability of the Karnofsky Performance Status was 0.99 in a pilot study by a research assistant, an otolaryngologist, and the principal investigator.

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supportive care needs. Potential factors were entered to identify factors related to unmet supportive care needs, including patients’ cancer stage (early vs. late), depression (present vs. absent), symptom distress, sleep disturbance (low quality vs. high quality), caregiver social support from the family, and social support from healthcare professionals. In a logistic regression analysis, caregivers’ needs were dichotomized into those with scores of 2 and below and those with scores of 3 or higher [8]. Reviews of the literature on regression modeling [35] indicate that the minimum sample size for each independent variable is 10 participants. Thus, a total sample size of 60 patient–caregiver dyads was the minimum required for this study to detect six independent variables at the 0.05 level.

Results Characteristics of patients Of the 110 eligible patient–caregiver pairs approached, eight declined to participate because of physical weakness. The average time since surgery ranged between 7 and 49 days, with a mean (standard deviation (SD)) of 17.5 (14.5) days. All patients were hospitalized, and mean age was 48.5 years (SD = 9.1, range = 28–62). Most participants were men (95.1%), were employed before surgery (84.3%), were married (75.5%), had a junior (43.1%) school degree, were Buddhist/Taoist (58.8%), had no private medical insurance (78.4%), had advanced cancer (58.8%) of the buccal mucosa (47.1%), underwent surgery with tumor excision combined with lymphadenectomy and reconstruction (58.8%), required concurrent chemoradiation therapy adjuvant treatment (47.1%), and had a functional status score of 80 (63.7%) and higher (26.5%). A majority of subjects were employed in the construction industry (30.4%). Nearly one-fourth of patients (25.5%) reported quitting their jobs after diagnosis and 58.8% returned to work after discharge (Table 1).

Characteristics of family caregivers Most caregivers were women (69.6%; mean age, 40 years), were employed (61.8%) in a part-time (42.2%) job, had graduated from senior high school (48%), and were religious (73.5%). More than 80% were caring for partners living in the same house. More than one-third did not share caregiving with other family members, and the most common duration of care was every day (64.7%) (Table 2).

Statistical methods

Survey findings

Data were analyzed with SPSS 20.0 (SPSS Inc., Chicago, IL, USA). Descriptive statistics were calculated for all variables. Pearson’s product moment correlation was used to identify factors potentially associated with unmet

The typical patient had mild symptom distress. The average (SD) depression score was 7 (3.6); 64.7% of the patients had a diagnosis of depression, and 15.7% were borderline depressive. The most common sleep problems

Copyright © 2014 John Wiley & Sons, Ltd.

Psycho-Oncology 23: 569–577 (2014) DOI: 10.1002/pon

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Table 1. Demographic and clinical characteristics of patients (n = 102) Variable

Number (%)

Age (years) ≥40

Unmet supportive care needs and characteristics of family caregivers of patients with oral cancer after surgery.

The aim of this study was to identify factors associated with unmet supportive care needs in family caregivers of patients with oral cancer after surg...
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