Investigation of health services and social needs of persons with laryngectomies in Hong Kong: a study of self-help involvement.

Individuals who experience surgical removal of the vocal mechanism due to laryngeal cancer are considered to be chronically ill. The results of the surgery not only imply a significant degree of irreversible damage to the physical body, but also represent assaults on multiple areas of functioning, such as psychosocial and occupational readjustments. Consideration of the issues of the health services and social needs of people with this disability becomes increasingly important as the number of individuals suffering from the laryngectomized condition increases.

Policies on Health and Welfare in Hong Kong

Yuen (1992) reported that Hong Kong lacks an effective health policy mechanism to guide long-term planning and development of health care provision as a whole. Demographic changes (i.e. aging of the population), rising medical costs, new medical interventions, and enhanced consumer expectations have all brought new pressures on the healthcare system. Governor Christopher Patten, in his address at the opening of the 1995/96 session of the Legislative Council on October 11, 1995 (Hong Kong Government 1995), emphasized the need to meet the community's aspirations for a modern and comprehensive health system in Hong Kong. The government is promoting the concept of self-help and mutual support among the chronically ill through the setting up of Patients' Resources Centers (PRC) since the establishment of the Hospital Authority in 1991. It is the intention of the government to continue to adopt a comprehensive approach to health care which meets demands for higher standards of care and service at an affordable cost to both patients and the community. The government encourages the integration of people with disability into the general community, so that they may develop their potential as responsible members and improve their quality of life. Since the current health care delivery model is mainly institutional-based as a result of the strong influence of the medical model, the advocating of self-help and mutual help offers an informal human relation type of service directed at ensuring a better quality of life for those who have chronic illnesses or conditions.

In 1993-1994, a number of Patients' Resource Centers (PRCs) began operation within major hospitals. Social workers are responsible for the operation of these resource centers. They organize patients' self-help groups, new patients' orientation sessions, health promotion for patients, volunteer activities, resource libraries, and a whole range of programs in which medical staff members are also involved in helping patients adjust to their disabilities. Consumer involvement in advocating self-help is of paramount importance in order to facilitate better quality of life for the chronically ill. The launch of the PRC concept in Hong Kong's Hospital Authority highlights the gradual increase in the emphasis of the utilization of peer support and mutual understanding by health care managers during the rehabilitation process.

Conditions and Needs of Persons with Chronic Illnesses in Hong Kong

With the rapidly aging population and the improvement in health care services, the number of the aged and chronically ill who are in need of care has increased significantly. The laryngectomy operation brings forth a chronic condition which is irreversible. According to Chan, Wong, Ho, Ip, and Tong (1992), the number of admissions to hospitals for treatment of disabilities in 1989 was 233,000. However, government figures reported nearly 270,000 people with disabilities. It is estimated that a great majority of these patients are living in the community and they need support of one kind or another for themselves and for their families, so that they can live as normal a life as possible. Supportive measures for those with disabilities and their families to continue community living are at present either too ad hoc or inadequate.

Self-help Ethos

The continuous development in medical science has extended the life expectancy of many patients. It creates increasing demands on medical facilities and services, particularly those for the elderly and chronically ill. In the 1980s, many patients, through the assistance of social workers and health care professionals, began to organize themselves into self-help organizations to express their needs and opinions on policies and services affecting them.

Richardson and Goodman (1983) reported a study of 515 self-help groups in the United Kingdom. These groups are organized for individuals with physical/medical conditions (e.g. mentally handicapped children and adults) or those after catastrophic events (e.g. widows). However, very few such individuals are being helped in self-help groups in Hong Kong. A survey conducted by the Zonta Club of Hong Kong in 1989 reported that there were only 29 self-help groups found in Hong Kong (The New Voice Club of Hong Kong, 1993). Most of the individuals with the above mentioned conditions are living in silence without any formal support of services and informal support from self-help groups. Among the 29 self-help organizations in Hong Kong, the New Voice Club of Hong Kong was awarded the Certificate of Merit by the Zonta Club in 1989 for their ongoing mutual support and self-help efforts among persons with laryngectomies. The New Voice Club is one of the few self-help groups which evolved from a purely patient group to one with professional involvement. Self-help groups can potentially serve as important links between the hospital and the community.

Issues in the Relationship Between the Self-help Involvement and Perceived Health Services and Social Needs

A review of the literature indicates a lack of systematic investigation on the types of needs of persons with laryngectomies in the domains of health services and social services, as well as the importance of those needs as perceived by the patients themselves. An early study concerning psychosocial factors and speech after laryngectomy (Amster, Love, Menzel Sandler, Sculthorpe, & Gross, 1972) failed to mention both the issue of health services and social needs, as well as the notion of self- help in the laryngectomized population. Issues concerning patients' general needs in medical and speech management had long been addressed in most of the laryngectomy textbooks. However, only recently is the issue of psychosocial care being emphasized in the rehabilitation of persons with laryngectomies (Blood, Luther, & Stemple, 1992; Chan, Sham, & Wei, 1993; Doyle, 1994).

With the upsurge of self-help activities in Hong Kong, particularly in recent years, and the impetus of improving quality of patient care to individuals with chronic diseased conditions, an investigation of the types and importance of health services and social needs, as well as the role of self-help in affecting the perception of those needs, by the persons with laryngectomies themselves would be of clinical importance. The information obtained would affect resource allocation (manpower and materials) in the overall and long-term planning of rehabilitation.

The present study was intended to investigate the relative importance of health services and social needs as perceived by the respondents, and the effect of self-help participation on the perception of those needs. The New Voice Club of Hong Kong was selected as the self-help organization for the present study.

The Focal Organization: The New Voice Club of Hong Kong

The New Voice Club of Hong Kong was established in 1984. It is the first self-help group to successfully be granted an office premise by the Housing Authority and funding from the Cancer Fund to hire its own administrative staff. The members are patients who have undergone surgical removal of the larynx due to laryngeal cancer. The Club continues to advocate better welfare policies and services for its fellow members, and also concentrates its efforts on urging the government to provide psychosocial services to the chronically ill.

The services offered by the Club are broadly classified into the following areas (The New Voice Club of Hong Kong, the 8th Executive Committee Report 1994-96):

(1) Direct Services and Activities

a) Voice Rehabilitation

Voice rehabilitation remains the main focus of the Club. Since the establishment of the Club, regular alaryngeal speech training classes have been organized to educate persons with laryngectomies on the use of esophageal speech, pneumatic devices, and electrolarynx. The main aim of these training classes is to help members to regain speech after laryngectomy. The instructors are experienced members of the Club. In order to upgrade service quality, some members were selected and sponsored to receive esophageal speech training in Japan during the past few years. They have committed themselves to the Club's speech training class after their return. The classes are held on a regular basis with individual tutorial sessions arranged for those in need.

Since August 1996, the Club has succeeded in soliciting support from the Hospital Authority for the implementation of the "Train the Trainer" project in the New Voice Club. Speech therapist support is now available on part-time basis and this project is subjected to review on a half-yearly basis.

b) Hospital / Home Visit

Visiting patients is another focus of the Clubs service. Members with laryngectomies will visit patients pre- and post-operatively. The purpose of the visits is to ease patients' psychological anxiety by demonstrating the ability to speak again and sharing feelings. With the assistance of the Patients' Resource Centers and medical practitioners in hospitals, the Club's visiting schedule has been successfully implemented in most hospitals (e.g. Queen Elizabeth Hospital, Queen Mary Hospital, Prince of Wales Hospital, Tuen Mun Hospital, etc.). The visiting team has expanded to more than 20 members. A total of more than 700 visits were made, benefiting more than 1,000 patients and their relatives.

In addition, home visits are also organized when a better understanding of the living condition and family dynamics is warranted. Regular experience-sharing sessions on visiting skills are held among the patient visitors in order to improve their interviewing techniques.

c) Recreational Activity

The main purpose for launching recreational programs is to provide opportunity for communication and sharing among members and their families. Periodic outings and seasonal gatherings are organized for the members to participate, enhancing mutual understanding and the development of harmonious interactive relationship.

d) Bulk Purchase, Repairing, and Equipment Loan

The Club liaises with manufacturers for the supply of speech aid products and other stomal care accessories with discount on bulk purchases. These items are for members to purchase at cost.

In 1994, the Club has had an agreement with the Association for Engineering and Medical Volunteer Services to offer speech device repairs. The Club also loans equipment to members when necessary.

e) Members' Hardship Fund

The Club is now preparing for the establishment of the "New Voice Club of Hong Kong -- Members' Hardship Fund" for its members in case of emergency.

f) District Support Network

Since 1993, the Club has started to organize district support networks for members living in remote areas. These networks offer emotional support and assistance to those live in the same area. There are five district networks: Tuen Mun and Yuen Long; Shaukeiwan; Aberdeen; Shatin and Taipo; and Shamshuipo. Regular monthly meetings are held in each locality.

g) Monthly Meeting and Health Talks

The Club holds its monthly meeting at a community center near the main office. The purpose of the meeting is to keep in touch with current members and provide counseling to the newcomers. Doctors, nurses, speech therapists, medical social workers and other health professionals are invited to give health talks at these meetings. Members are encouraged to participate in order to develop their insights into different issues related to health.

(2) Overseas Liaison

a) The Asian Federation of Laryngectomee Association (AFLA) and the International Laryngectomee Association (ILA)

The Club has been an active member of the AFLA since its inauguration in 1985. The Club has also been a member of ILA since 1993. ILA has offered services since 1952. ILA and other overseas associations such as Thailand Laryngectomee Association have visited the Club and shared their experience during the Club's speech training classes.

b) Linkages with China

The Club has had a linkage with mainland China since 1993. With the sponsorship given by the Loving Care and the Hong Kong Cancer Fund, the Club was able to visit most of the main cities in China (e.g. Beijing, Shanghai, Chengdu, Chongqing, Gwangzhou, etc.). Through these activities, the members of the Club were able to gain insights into health services practice and rehabilitation processes of cancer patients in different parts of China.

(3) Education and Publicity

a) Community Education Program

The Club participates in the community education programs offered by other organizations such as the Community Rehabilitation Network. This is intended to facilitate a better understanding of the Club by the general public.

b) International Conference

The Club also sends representatives to present in various symposia. An example is the Cancer Rehabilitation Symposium which was held in July 1995 in China. Through participation of local and international conferences, the Club is able to update advances in cancer rehabilitation.

(4) Advocacy

The Club continues to advocate for better welfare policies and services for persons with laryngectomies. The New Voice Club is a member of the Alliance of Patients' Mutual Help Organization and actively participates in all the activities. Over the years, Alliance has concentrated its energy in urging the government to provide psychosocial services for the chronically ill. The establishment of the Community-Based Rehabilitation Resource Center was set up in 1994 in response. In conjunction with the advocacy of the Alliance of Patients' Mutual Help Organization, issues such as itemized medical charging in public hospitals, improvement in Comprehensive Social Security Assistance, and improvement in the provision of cancer care services are undergoing revision by the relevant authorities.

Methodology

Participants

Forty-six adults with laryngectomies (42 males and 4 females) who bad been members of the New Voice Club of Hong Kong for at least one year participated in the present study. Membership of at least one year was used as one of the selection criteria to ensure that the participants had experienced the self-help group. The participants were randomly selected from a total of 509 members by the Club's staff team. The selected participants were asked to complete a consent form before the study. All of them agreed to participate. This might be explained by a combination of factors:

(1) Members of the self-help group are predisposed to help and participate.

(2) The present study is a research conducted by the honorary advisor.

(3) Most of the members are elderly, unemployed/retired, hence allowing them time to participate in the present study.

(4) Social activities and commitments are reduced due to their financial constraints.

The participants were between 47 and 81 years of age and had no known history of speech problems except that associated with laryngectomy. They have been alaryngeal speakers using esophageal tracheoesophageal pneumatic artificial (Taiwan Tube) laryngeal, or electrolaryngeal (Servox or Neovox) phonation for 1 to 23 years.

Materials

An interviewer-administered questionnaire was designed to ensure participants understanding of the question items. Equal interval rating scales of "1-5" and "1-3" with labeled check boxes were used for response choices. The higher the score, the better the performance or the greater is the necessity for the items probed.

The questionnaire consisted of a framework which was designed to reveal (1) the respondents' personal profiles, (2) their perceived health services and social needs during the early phase (first six months) of post-laryngectomy rehabilitation, and (3) the degree of their involvement in the New Voice Club of Hong Kong.

The questionnaire consisted of three main sections. They are as follow:

Section I: Demographics of respondents

Section I was designed to generate a personal profile for the respondents. It consisted of personal information of respondents including age, gender, date of surgery, length of membership at the New Voice Club, educational level, family dynamics, vocational status, financial status, and types of community service received in the past six months.

Section II: Identification of health services and social needs

Section II was designed to gather information from the participants on the type and degree of needs perceived in the health services and social domains during the early phase (first six months) of post-laryngectomy rehabilitation. The section included four areas: (1) speech rehabilitation; (2) medical rehabilitation; (3) psychological support and (4) social support.

Speech rehabilitation. This area provided information on the needs perceived by the respondents on the professional speech training given by the speech therapists at the hospitals or clinics, as well as the mutual speech learning experience offered by the New Voice Club of Hong Kong.

Medical rehabilitation. This area is concerned with the regular ENT and radiotherapy follow-ups, convalescence care, and hospice service received by the respondents.

Psychological support. This area covered the issues of emotional and/or physical support from spouse, family counseling, and from other persons with laryngectomies with similar medical conditions.

Social support. This area covered issues on the necessity of financial assistance, housing assistance, occupation retraining, self-help group, and community services received by the respondents.

Subjective ratings were given by the respondents on an equal-interval scale of "1 - 5". A rating of "1" referred to "no need at all" and "5" indicated "absolute necessity".

For the aforementioned four areas, the choice "Others" was also available to the respondents in addition to the rating scale. This served to obtain additional information on the health services and social needs from the respondents, if any.

Additional questions were included to probe for the absence/presence of pre- and post-surgery visitations. Those reported to have been given pre- and post-surgery visitations were also asked to rate the standard of the visits. All the respondents had to rate the importance of pre- and post-surgery visitations by both the speech therapist(s) and peer laryngectomees regardless of their previous experience with those visits. An equal-interval rating scale of "1 - 3" was used. A larger number in the rating implied a greater need for pre- and post-surgery visitations by the parties concerned.

Section III: Involvement of self-help group (The New Voice Club)

The degree of respondents' involvement in the New Voice Club was indicated by the sum total of the frequency of participation in the activities organized by the New Voice Club, the average number of times per month that the respondents participated in the Club's activities, and the amount of time the respondents could spare as volunteers for the New Voice Club when necessary. An equal-interval rating scale of "1 - 5" was used with "1" indicating "minimal or no involvement" and "5" referring to "be involved all the time".

Procedure

The questionnaire was administered to one participant at a time. An interviewer-administered format was adopted in completing the questionnaire. Data collection took place in a quiet speech therapy room located at the Department of ENT, Yau Ma Tei Specialist Clinic Extension of the Queen Elizabeth Hospital.

During the experimentation, the participant was interviewed in a face-to-face situation in a personal and comfortable environment. The experimenter explained each question item to the participants in order to ensure that the participants completely understood. The confidentiality of individual data was maintained. All respondents were notified that their participation in the study would not have any negative effect on the nature of their medical treatment or self-help involvement. The questionnaire was administered in Chinese.

Before the administration of the questionnaire to the forty-six subjects, two individuals were randomly selected for pilot testing. The questionnaire was administered to these two selected individuals and results were compared. Minor modifications were made with regard to the wordings and relevance of the question items.

During the administration of the questionnaires, the experimenter tried to maintain a minimum experimenter-participant interactional bias by limiting the conversation with the participants to the questionnaires (Schiavett & Metz, 1097). The experimenter attempted to only explain the question items without providing participants with personal opinion and ideas.

Statistical Analysis

Reliability

In order to measure the intrarater reliability, 10 individuals (approximately 22% of all participants) were randomly selected and interviewed again using the same questionnaire approximately one month after the first interview. The Pearson Product Moment Correlation coefficient and mean error values between the results obtained from the first and second interviews of these ten individuals were calculated and served as the test-retest (intrarater) reliability.

A mean error value of 7 (mean % error = 10%) was calculated. The Pearson Product Moment Correlation coefficient between the first and the second ratings by the 10 subjects was found to be r = 0.9999 (p [is less than] 0.01).

The Cronbach alpha value was used to indicate the interrelatedness of the question items within a scale. An alpha value of 0.6 or above is generally accepted by most researchers in order to ensure the reliability of the scale. The Cronbach alpha values of the four areas of needs in Section II are found to be 0.8 (Speech Rehabilitation), 0.75 (Medical Rehabilitation), 0.79 (Psychological Support), and 0.61 (Social Support). The alpha value of Section III is 0.83.

It was found that all alpha values exceeded 0.6, indicating that the test items within each section were tapping into a common construct for that section.

Qualitative Analysis

The results obtained from Section I provided information on the respondents' profiles, including socio-demographic characteristics, post-surgery time period, years of membership with the New Voice Club, vocational status, and the primary mode of speech production used. Section II revealed the frequency distribution of the responses on perceived importance of health services and social needs, and the response pattern on perceived importance of pre- and post-operative care offered by both the professionals and peers. Additional comments given by the respondents under each section of the questionnaire would be discussed when available.

Quantitative Analysis

Pearson Product Moment Correlation coefficients were calculated to indicate the relationships between (1) the degree of self-help participation and the perceived degree of needs in the health services and social arena, and (2) the perceived importance of services offered by speech therapists and that offered by peer laryngectomees, both in pre-operative and post-operative phases.

Results

Personal Profile of Respondents

The personal profile provides a descriptive analysis of the background of the participants.

Table 1 shows the socio-demographic characteristics of the respondents, including sex, age, education level, marital status, living status, availability of caregivers, and financial condition.

Table 1. Socio-demographic Characteristics of Respondents.

                       Socio-demographic
                           Variable        Frequency   Percentage

Gender                       Male             42          91.3
                            Female             4           8.7

Age (years)                  41-50             3           6.6
                             51-60            14          30.3
                            Over 61           29          63.1

Education Level
(years)                        0              13          28.4
                          6 or below          20          43.4
                              7-9             10          21.7
                             10-11             3           6.5
                            over 11            0           0.0

Marital Status              Single             3           6.5
                            Married           33          71.7
                           Divorced            2           4.3
                            Widowed            8          17.5

Living Status             Lives Alone          6          13.0
                       With Spouse only                   17.4
                       w/Family Member        31          67.4
                        With Friends           1           2.2

Careers
                            Spouse            31          67.4
                              Son             29          63.0
                           Daughter           26          56.5
                          Daughter-in
                             -law             15          32.6
                          Son-in-law           9          19.6
                         Grandchildren         9          19.6
                           Siblings           10          21.7
                            Parents            1           2.2
                            Friends            1           2.2
                          Neighbours           2           4.3
                            No one             1           2.2

Financial Condition
Personal Income               No              38          82.6
                              Yes              8          17.4

Financial Assistance
                              No               1           2.2
                              Yes             45          97.8
            Disability allowance
                           (Normal)           37          80.4
            Disability allowance
                            (High)             5          10.9
            Old age allowance                  3           6.5

Main Source of Household Income

                        Own occupation         8          17.4
                         Own savings/
                          investment           1           2.2
                            Spouse             0           0.0
                           Children           23          50.0
                        Social Security       14          30.4

Table 2 shows the vocational condition of the participants before and after laryngectomy.

Table 2. Vocational Conditions of Respondents

                   Work Status

              Before         After
              No. of         No. of
              Subjects (%)   Subjects (%)

Full-time     34 (73.9%)      7 (15.2%)
Part-time      1 (2.2%)       4 (8.7%)
Retired       10 (21.7%)     12 (26.1%)
Unemployed     1 (2.2%)      23 (50%)

Table 3 shows the frequency distribution of the respondents' post-surgery time period. The period after surgery is an indication of the amount of the respondents' alaryngeal experience.

Table 3. Respondents' Post-Surgery Time Period

Post-Surgery (years)   Frequency   Percentage
        1-2                2           4.3
       2.01-3              7          15.2
       3.01-4              2           4.3
       4.01-5              4           8.7
       5.01-7              8          17.4
      7.01-10              7          15.2
      over 10             16          34.9

All participants joined the self-help group after the surgery. The percentage distribution of membership years with the New Voice Club shows that 52.2% of the respondents have membership of more than 5 years.

The percentage distribution of the primary use of alaryngeal speech options is: electronic larynx (54.4%), pneumatic device (13%), tracheoesophageal speech (13%) and esophageal speech (19.6%). These four options are the current alaryngeal phonations used by persons with laryngectomies in Hong Kong.

Perceived Importance of Health Services and Social Needs

Table 4 shows the distribution of the responses made by the participants. The types of health services needs and social needs identified were specific to the laryngectomized population. The rating of "1" refers to "least important" while "5" refers to "most important".

Table 4 Perceived Importance of Health Services and Social Needs

Perceived Importance of Health Services and Social Needs

                                    Least Important
% (number of Subjects)
                                    1           2         3
Health Services Needs
(A) Speech Rehabilitation
    Training by Speech             0.0 (0)    2.2 (1)   10.9 (5)
    Therapists
    Training by Peers              0.0 (0)    0.0 (0)    8.7 (4)

(B) Medical Rehabilitation
    Regular ENT Follow-up          0.0 (0)    2.2 (1)   10.9 (5)
    Regular Radiotherapy          34.8 (43)   0.0 (0)    8.7 (4)
    Follow-up
    Convalescence Care         (*)93.5 (43)   2.2 (1)    0.0 (0)
    Hospice Care               (*)97.8 (45)   2.2 (1)    0.0 (0)

Social Needs
(C) Psychological Support
    Spouse/Family                  2.2 (1)    2.2 (1)    2.2 (1)
    Support & Mutual
    Understanding
    Family Counseling             39.1 (18)   4.3 (2)    6.5 (3)
    Mutual Support from            2.2 (1)    4.3 (2)    4.3 (2)
    Others with the Same
    Disease Condition

(D) Social Support
    Financial Assistance          41.3 (19)   2.2 (1)    6.5 (3)
    Housing Assistance         (*)73.9 (34)   2.2 (1)    2.2 (1)
    Occupation Re-training     (*)80.4        2.2 (1)    2.2 (1)
    Self-Help/Mutual               0.0 (0)    2.2 (1)   10.9 (5)
    Support Group
    Community Services            54.3 (25)   4.3 (2)   10.9 (5)

                               Most Important

% (number of Subjects)           4            5             N/A

Health Services Needs
(A) Speech Rehabilitation
    Training by Speech         23.9(11)    (*)63.0 (29)   0.0 (0)
    Therapists
    Training by Peers          21.7(10)    (*)69.6 (32)   0.0 (0)

(B) Medical Rehabilitation
    Regular ENT Follow-up      17.4 (8)    (*)69.6 (32)   0.0 (0)
    Regular Radiotherapy       13.0 (6)       39.1 (18)   4.3 (2)
    Follow-up
    Convalescence Care          0.0 (0)        4.3 (2)    0.0 (0)
    Hospice Care                0.0 (0)        0.0 (0)    0.0 (0)

Social Needs
(C) Psychological Support
    Spouse/Family               8.7 (4)    (*)78.3 (36)   6.5 (3)
    Support & Mutual
    Understanding
    Family Counseling          10.9 (5)       34.8 (16)   4.3 (2)
    Mutual Support from        26.1(12)    (*)63.0 (29    0.0 (0)
    Others with the Same
    Disease Condition

(D) Social Support
    Financial Assistance        6.5 (3)       43.5 (20)   0.0 (0)
    Housing Assistance          6.5 (3)       15.2 (7)    0.0 (0)
    Occupation Re-training      4.3 (2)       10.9 (5)    0.0 (0)
    Self-Help/Mutual           26.1(12)    (*)60.9 (28)   0.0 (0)
    Support Group
    Community Services          6.5 (3)       23.9 (11)   0.0 (0)

(Note: (*) Majority of Respondents)

Perceived Importance of Pre- and Post-operative Care

Table 5 below showed the frequency distribution of the responses made by the participants. The pre-operative visits are normally given when the patients are admitted to the hospitals to be ready for the surgery. Thus, these visits will normally be made within one week before the scheduled date for the operation. The postoperative visits refer to those visits made when the patients are still being hospitalized after the surgery. The average period of post-operative stay in the hospital is about three weeks.

Table 5 Perceived Importance of Pre- and Post-operative Care.

Perceived Importance of Pre- and Post-operative Care

       % (number of subjects)          Least
                                     Important
                                         1         2

I. Pre-Operative Visit/Service
    By speech therapists              6.5 (3)    30.4 (14)
    By persons with laryngectomies    0.0 (0)    17.4 (8)

II. Post-Operative Visit/Service
    By speech therapists              4.3 (2)    10.9 (5)
    By persons with laryngectomies    0.0 (0)    17.4 (8)

                                         Highly
                                        Important
                                            3

I. Pre-Operative Visit/Service
    By speech therapists              (*)63 (29)
    By persons with laryngectomies    (*)82.6 (38)

II. Post-Operative Visit/Service
    By speech therapists              (*)84.6 (39)
    By persons with laryngectomies    (*)82.6 (38)

Pre-operative: r = 0 32 p<0.05 Post-operative: r = 0.53, 12<0.01 (Note: (*) Majority of Respondents)

Involvement of Self-help and Perceived Importance of Needs

The Pearson Product Moment Correlation coefficients (r) between involvement of self-help and the perceived importance of health services and social needs are: speech rehabilitation (0.25); medical rehabilitation (-0.01); psychological rehabilitation (0.1); and social support (0.17).

Discussion

There was no response given to the response item "Others" in the questionnaire. This is probably due to the use of forced-choice responses by most respondents instead of having the need to specify own responses.

Reliability Measures

The high intrarater reliability (r = 0.9999, 12 [is less than] 0.01) and the low mean percent error (10%) indicated that the subjects' responses were reliable and consistent.

The Cronbach alpha values were found to be above 0.6 for sections II and III of the questionnaire. This indicated adequate reliability of the scale for statistical analysis.

Personal Profile of Respondents

The socio-demographic characteristics, the vocational status, the length of post-surgery period, the membership years with the New Voice Club, and the pattern of the use of alaryngeal phonation among the participants made up the profile of the respondents selected for the present study.

Socio-demographic Characteristics of Respondents

Table 1 shows the frequency distribution of the socio-demographic variables of the respondents. The incidence of laryngeal cancer between the two genders has been reported to be 9 (male): 1 (female) in Hong Kong with predominantly middle age or above level (Muir, Waterhouse, Mack, Powell, & Whelan, 1987). The present data also revealed a predominantly male (91.3%) population. The high incidence of smoking and drinking habits seen in males of this generation were reported to be accountable for the predominant occurrence of laryngeal cancer in the male population (Doyle, 1994). Over 90% of the sample were above 50 years of age. They were mostly of primary educational level or below, which corresponded closely with the predominant manual type of occupations such as butcher, carpenter, and hawker.

About 71.7% of the respondents were married and 21.8% of them were either divorced or widowed. About 6.5% of them reported to be single. The frequency distribution of the marital status showed varied types of marital conditions in this specific population. About 84.8% of the respondents were reported to be living with their families, which implies the availability of family support to the diseased condition. The three most frequently reported caregivers available were the spouse, the son, and the daughter. This is logical since spouse and children are generally closely tied to the family.

With the relatively elderly population, low educational level, and manual occupations in this specific disease category, it is not surprising to see the weak earning power of the respondents after surgery. Only about 17.4% of them reported having their own personal income. The others were either receiving some forms of financial assistance (e.g. disability allowance "normal"; disability allowance "high"; old age allowance, etc.) or not receiving any form of subsidy (only one subject) at all. Thus, social security became the main source of household income for almost one-third (30.4%) of the respondents. Children, on the other hand, were found to be integral contributors to household income in 50% of the cases. This reflects the Chinese tradition of seniors' dependence on financial support from children.

Vocational Status

It is obvious that there was a dramatic increase in non working individuals after the operation. The loss of speech and postsurgical sequelae in terms of breathing through the stoma in the neck region and possible reduction in physical strength may render continuation of original occupation difficult. Six out of the 11 working laryngectomees did not report substantial demand of speech at work since they are either manual workers or have their own business. Those reporting a certain degree of threat after the surgery to the continuation of the present occupation are those working as salesmen or taxi drivers, since there is a substantial demand on vocal use at work.

Respondents' Post-surgery Time Period

Table 3 shows that about one third (32.5%) of the respondents had surgery within a 5 year period, about one third (32.6%) had surgery between 5 to 10 years, and another one third (34.9%) had surgery over 10 years. The data on frequency distribution also reflected a high chance of survival after the operation in about 10 years' time.

Respondents' Years of Membership with New Voice Club

The New Voice Club was inaugurated in 1985. Table 5 shows that about one half (47.8%) of the respondents have joined the New Voice Club for five or fewer years. Approximately one-quarter (26.1%) of the respondents have been members from 5 to 10 years. The remaining one-quarter joined the Club at least ten years ago.

Respondents' Primary Mode of Speech Production

Over half (54.4%) of the respondents were electrolaryngeal speakers. Equal portion (13%) of the respondents used pneumatic device and tracheoesophageal speech. The remaining 19.6% of the respondents were esophageal speakers. The methods of speech production adopted depended on the surgical option, professional judgment and patient's decision. Since electronic larynx is comparatively easier to learn and therefore serves as a communication tool very early on after the operation, it is not surprising that over half of the respondents subsequently rely on this mode of phonation as their means of verbal communication.

Perceived Importance of Health Services and Social Needs

A person who had been diagnosed with laryngeal cancer would first seek help in curing the ailment. Thus, the need for some form of medical care is apparent. One of the consequences of total laryngectomy is the complete loss of voice due to the removal of the vocal mechanism. Consequently, speech rehabilitation becomes an essential service specific to this population. The traumatic experience from diagnosis to treatment will create stress, anxiety, helplessness, etc. for the patient. Inevitably, care and support at both the psychological and social levels are required in order to combat the chronic diseased condition.

The result indicated that both professional speech training available in hospitals and clinics and mutual-learning classes held by the self-help group were perceived to be of equal importance. This finding should be considered by those involved in planning and managing health and rehabilitation services. Because verbal communication is of primary concern to almost all laryngectomees, they will make use of any chance to improve their speech. Regular ENT follow-ups were considered essential, while convalescence care and hospice care were not important. Hospice care was considered as the terminal point for cancer treatment and nearly all the respondents rated this form of care as having the least importance. In addition, a relatively equal portion of participants responded to the extremes of the scale for radiotherapy follow-up, suggesting that some patients might no longer need radiotherapy service.

In terms of psychological support spouse, family, and others with the same disease condition were of prime importance. In terms of social support the "self-help/mutual support group" was rated by the majority of participants to be most important. This further substantiates the value of self-help in the total rehabilitation of participants. About half of the participants rated "community services" as having least importance, which may reflect their past experience with this form of care. "Housing assistance" and "occupation retraining" were considered to be of least importance. This reflects the fact that most participants have rather stable housing statuses (either in form of private or public housing) before the surgery. The relatively old age in this patient group renders vocational retraining unnecessary. Besides, the loss of laryngeal voice production and possible reduction of physical strength after surgery may render the continuation of current jobs difficult. Responses on financial assistance fell on the two extremes of the scale, which reflected the variations in the financial conditions of the respondents. Moreover, financial assistance inevitably remains as an essential element to help those in financial difficulty.

Perceived Importance of Pre- and Post-operative Care

Results indicated that a majority of respondents rated both pre- and post-operative visits/services as highly important. There was a mildly positive relationship between the perceived importance of pre-operative services provided by speech therapists and those given by peer laryngectomees (r = 0.32, 12 [is less than] 0.05). A significant positive relationship was found between the perceived importance of post-operative visits/services offered by speech therapists and those given by peer laryngectomees (r = 0.53, 12 [is less than] 0.01). These findings indicated that those respondents who valued professional support highly would also highly value peer support. The necessity of both pre- and post-operative visits/services provided by professionals and peers in the laryngectomized population should not be overlooked by the health services authority.

Involvement of Self-help and Perceived Importance of Health Services and Social Needs

Results indicated that there was no significant relationship between the parameter of self-help involvement and the perceived importance of health services and social needs. The lack of relationship implied that those health services and social needs that were either perceived to be essential or having least importance in the first place would be relatively independent of the degree of self-help involvement. Following the concept of Maslow's Hierarchy of Needs (Hilgard, Atkinson, & Atkinson, 1979), those needs that were identified to be essential for this population might be, in fact basic/physiological or safety needs. According to the responses given by the participants, continued ENT follow-ups and speech rehabilitation were areas of basic health services needs. In terms of the area of social needs, psychosocial support from both the spouse/family and the peers were perceived to be of prime concern in patients after total laryngectomy. It would be logical to speculate that involvement in self-help efforts will promote participants' insights into the nature of the diseased condition, and, therefore, those involved will be in a better position to have their needs met in terms of health care services and psychosocial support. The lack of significant positive relationship found between the degree of self-help involvement and the perceived importance in each area of health services and social needs may reveal the basic nature of such needs. Further understanding of the nature and the learning process of self-help in organizations will provide further insights into the role of self-help involvement. Further investigation and evaluation of the type of health services and social needs would be warranted, especially in the ongoing planning and development of rehabilitation programs for persons with laryngectomies in Hong Kong.

Conclusion

The present study is considered to be an initial attempt to reveal the health services and social needs of persons with laryngectomies, and the relationship between the degree of self-help participation and the perception of those needs. The sociodemographic data revealed a predominantly male population, indicating a gender preference in the occurrence of the laryngeal cancer. Future research may need to consider a balanced gender count in order to minimize the possible bias due to gender differences. Results of the study showed that the majority of the respondents rated highly on both the health services provided by medical/speech therapy professionals and the psychosocial support offered by family and peers. The essence of self-help/mutual help should not be overlooked in enhancing psychological and social support of the laryngectomized individuals. The fact that no relationship was found between self-help involvement and perception of needs might be related to the characteristics of those needs for individuals with laryngectomies. It is obvious that self-help involvement is not a substitute for medical care or professional speech rehabilitation offered in the health care setting. Nevertheless, the planning and management of self-help groups and publicly provided health services should be planned and managed together in order to ensure an integrated spectrum of services to patients with chronic illnesses and/or conditions. The application of the notion of self-help in the planning and provision of health care services may offer a new arena in which to foster the continuation of rehabilitation services for patients with chronic illnesses/conditions from the hospital setting to the general community.

The potential benefits of the development of the self-help movement for patients with chronic illnesses or conditions in Hong Kong rely very much on collaboration among the government health care providers, health and social services planners, and to a large extent the patients and their families throughout the course from diagnosis to rehabilitation.

Acknowledgement

Sincere appreciation is given to my project supervisor Mr. Colin Grant, visiting fellow, Hong Kong Polytechnic University, who has driven me along with his expert advice and comment. Special thanks are extended to the members of the New Voice Club for their full participation, the staff team of the club for their co-operation, and the Centre-in charge of the Community Rehabilitation Network Mr. Ng Hang Sau for his invaluable comments on the earlier draft of the questionnaire.

References

Amster, W. W., Love, R. J., Menzel, O. J., Sandler, J., Sculthorpe, W. B., & Gross, F.M. (1972). Psychosocial factors and speech after laryngectomy. Journal of Communication Disorders, 5, 1-18.

Blood, G. W., Luther, A. P., & Stemple, J. C (1992). Coping and adjustment in alaryngeal speakers. American Journal of Speech-Language Pathology, 1, 63-69.

Chan, C. L. W., Sham, J.S.T., & Wei, W. I. (1993). Contribution of self-help to the mental health of laryngectomees in Hong Kong. Asia Pacific Journal of Social Work, 3(1), 24-35.

Chan, C., Wong, D., Ho, P., Ip, F., & Tong, H. (1992). Report of a Survey of the Members of Self-help Groups for Persons with Chronic Illness in Hong Kong. Hong Kong: Department of Social Work and Social Administration, University of Hong Kong.

Doyle, P. C. (1994). Foundations of Voice and Speech Rehabilitation Following Laryngeal Cancer. San Diego, CA: Singular Publishing Group, Inc.

Hilgard, E. R., Atkinson, R. L. & Atkinson, R. C. (1979). Introduction to Psychology (7th Ed.). New York, NY: Harcourt Brace Jovanovich, Inc.

Hong Kong Government (1995). Hong Kong: Our Work Together. Address by the Governor, the Right Honourable Christopher Patten at the Opening of the 1995/96 Session of the Legislative Council, 11 October 1995. Hong Kong: Government Printer.

Muir, C., Waterhouse, J., Mack, T., Powell, J., Whelan, S. (1987). Cancer incidence in five continents. IARC Scientific Publications, 88 (V).

The New Voice Club of Hong Kong (1993). 1992-1993 Annual Report. Hong Kong.

The New Voice Club of Hong Kong (1996). The 8th Executive Committee Report 1994-96. Hong Kong.

Richardson, A., & Goodman, M. (1983). Self-help and Social Care: Mutual Aid Organizations in Practice. London, United Kingdom: Policy Studies Institute.

Schiavetti, N., & Metz, D. E. (1997). Evaluating Research in Communication Disorders (3rd Ed.). Boston, MA: Allyn and Bacon.

Yuen, P. P. (1982). Medical and health. In Y. S. Cheung and K. C. Kwong (Eds.). The Other Hong Kong Report 1992 (pp. 284-286). Hong Kong: Chinese University Press.

Irene C. L. Kwok, 11/F, Speech Therapy Unit, Department of ENT, Yau Ma Tel Specialist Clinic Extension, 143 Battery St., Yau Ma Tel, Kowloon, Hong Kong. Email: [e-mail]