QUALITATIVE King et al.

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Organizational Characteristics and Issues Affecting the Longevity of Self-Help Groups for Parents of Children With Special Needs
Gillian King Debra Stewart Susanne King Mary Law

In this article, the organizational characteristics and issues affecting the maintenance of nine self-help groups for parents of children with special needs are discussed. Qualitative data were collected through interviews with 20 parents and observation of six group meetings. For continued existence, groups must deal with the challenges of encouraging new leaders, attracting new members, obtaining funds or assistance to support their activities, and meeting the changing needs of members. Important organizational characteristics associated with longevity are committed and effective leadership, community connections that help provide needed funds or practical assistance, and the willingness of group members to change activities to meet changing needs. This information can be used by parents and service providers to plan new groups, recruit group members, and ensure the effective functioning of groups as they change over time. even percent of children younger than 15 years of age have a disability that limits their daily activities (Statistics Canada, 1992). Parents often join a self-help group to help them deal with the day-to-day issues that arise in parenting a child with special needs. The growth in self-help groups is a powerful trend in our society today. In 1987, approximately 2% of the Canadian population (420,000 individuals) belonged to self-help groups (Gottlieb & Peters, 1991), and in 1996, approximately 10 million Americans participated in self-help groups (Kessler, Mickelson, & Zhoa, 1997). It is estimated that approximately 25 million Americans have belonged to such groups at some point in their lives (Kessler et al., 1997).
AUTHORS NOTE: The authors are indebted to the members of the parent support groups who took part in this study. Their openness and candor helped the authors to gain a true sense of the experience of being part of a support group. The authors would also like to thank Linda Terry and June Chiu for their help in contacting groups and the National Health Research and Development Program of Health Canada for providing funding. The authors would like to acknowledge the support of CanChild: Centre for Childhood Disability Research, McMaster University (formerly the Neurodevelopmental Clinical Research Unit), funded by the Ontario Ministry of Health, and thank other members of CanChild for their input.
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Our interest is in self-help groups led by parents of children with special needs (also called mutual support or mutual aid groups) rather than groups led by service providers. Self-help groups are voluntary groups that consist of individuals who share a common predicament or concern and where mutual help is provided for and by members (Humphreys & Rappaport, 1994; Jacobs & Goodman, 1989; Maton, Leventhal, Madara, & Julien, 1989; Phillips, 1990). Anumber of societal trends has contributed to the growing self-help group phenomenon: social upheaval, medical breakthroughs that have extended peoples life expectancy, the shift away from institutional care to care in the community and home, financial constraints that have reduced available health services, and a growing interest in providing services that are family centered (Humm, 1997; Kessler et al., 1997; Rosenbaum, King, Law, King, & Evans, 1998). Self-help groups exist for almost every physical, behavioral, and emotional condition and for many life transitions (Humphreys, 1997; Kessler et al., 1997). Substance abuse groups account for about 75% of the annual participation in self-help groups (Kessler et al., 1997). There are no published data about the extent to which parents of children with special needs use self-help groups. However, in a recent Ontario-wide survey by CanChild: Centre for Childhood Disability Research, 20% of the 353 parents surveyed indicated that they belonged to a parent support group. Why do people join self-help groups? These groups meet three basic needs: social support, practical information, and a sense of shared purpose or advocacy (Bennett, DeLuca, & Allen, 1996; Koroloff & Friesen, 1991; Madara, 1997; Phillips, 1990; Rawlins & Horner, 1988). Participation allows parents of children with special needs to interact with those who share the same experiences and family stresses (Rawlins & Horner, 1988). Parents obtain a better understanding of their childs special needs and information about services available in the community (Koroloff & Friesen, 1991). Empowerment achieved through self-help groups encourages parents involvement in activities such as lobbying government agencies for funding or changing environmental barriers. Thus, empowerment on the personal, interpersonal, and political levels is often cited as the overriding benefit of meeting others in similar life situations (Bennett et al., 1996; Gidron, Chesler, & Chesney, 1991; Jacobs & Goodman, 1989; Riessman, 1985). Thus, there appear to be universal benefits in terms of social support, practical information, and a sense of shared purpose, regardless of the nature of the predicament that is the rallying point of the self-help group. Empirical studies of the effectiveness of self-help groups are increasing in number, but they are still relatively rare (Kessler et al., 1997; Rawlins & Horner, 1988), aside from the fairly extensive research conducted on Alcoholics Anonymous (Humphreys & Rappaport, 1994). The quality of the research is uneven (Humphreys, 1997) but indicates fairly consistently that members are satisfied with the support they receive and feel the groups are effective (Biegel & Yamatani, 1987; Diehl, Moffitt, & Wade, 1991; Hinrichsen, Revenson, & Shinn, 1985; Humphreys, 1997; Levy, 1976). Most studies have addressed behavior control problems such as addictions (Humphreys, 1997). We are aware of only four studies dealing specifically with self-help groups for parents of children with disabilities or chronic nonprogressive conditions. Two of these studies were questionnaire based (Iscoe & Bordelon, 1985; Rawlins & Horner, 1988), and two of them were qualitative in nature (Bennett et al.,

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1996; Law et al., 1999). These studies indicate that members find self-help groups to be beneficial. The two qualitative studies reveal that participants value the groups as a source of information, a support or emotional outlet, and a means of developing ideas and actions. Although we know something about the benefits of participation for individuals, with the exception of work by Maton (1988; Maton et al., 1989), there is a dearth of information about the important organizational characteristics of self-help groups, that is, their structure, process, and the issues they face and must deal with to survive. These are commonly accepted organizational characteristics of small groups (Olmsted & Hare, 1978). An organizational perspective was taken by Maton et al. (1989) in a quantitative study of the influence of three predictors (national affiliation, professional involvement, and the type of focal problem of the members) on the birth and death of many different types of self-help groups. Maton (1988) examined the relationship of several organizational variables (role differentiation, order and organization, and leadership) to members well-being and their appraisal of the group. Groups for parents of children with special needs were not included in either study. Maton et al.s study indicates, however, that organizational characteristics do affect the viability of self-help groups. There is a lack of knowledge about how self-help groups evolve over time. Task-oriented, time-limited groups have been described as going through four stages: clarifying a basic purpose, generating the skills and resources necessary to meet group goals, establishing group cohesion, and achieving goals (Olmsted & Hare, 1978). Self-help groups are more complex in that they deal with multiple goals, including emotional support and advocacy, and do so over a longer period of time than do task-oriented groups. Shulmans (1992) description of the phases of professionally led support groups is perhaps more relevant to this study. He describes the following four phases: exchanging information, developing intimacy, solidifying relationships, and terminating. We do not know, however, whether self-help groups (in particular, self-help groups for parents of children with special needs) go through these same evolutionary stages. Steele (1965) has described several issues in the formation of self-help groups, including recruitment, funding, and leadership issues. It is not known, however, whether these issues continue on or whether other issues arise in the life of groups. There is little research on the organizational or evolutionary aspects of self-help groups (Maton et al., 1989). We are not aware of any study that has specifically described the key characteristics that sustain these groups and contribute to their existence or the types of issues that are dealt with during the groups evolution. Researchers are beginning to realize that traditional quantitative research methods have limits when it comes to examining the effectiveness of self-help groups (Powell, 1985; Tebes & Kraemer, 1991). Qualitative research has a greater potential to uncover the complex issues involved in the changes in organizational characteristics of self-help groups over time. Therefore, a grounded theory approach was used in this study (Strauss & Corbin, 1994), an approach for developing theory grounded in data that are systematically gathered and analyzed. Our ultimate aim was to provide a conceptual direction for future research on the organizational aspects and evolution of self-help groups for parents of children with

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special needs. We hoped to identify the structural and process elements that help groups flourish and evolve and to gain insight into the issues faced by groups as they change over time. It is important to have this information to help parents establish groups that have a good chance of surviving and to ensure the effective functioning of groups as they change over time.

METHOD The Groups and Individuals Involved

Nine parent self-help groups in Ontario, Canada, took part in this study. Nineteen possible groups were identified by two parents on the research team who had participated in an Ontario-wide parent group association and were knowledgeable about existing groups. The nine groups were selected using a maximum-variation sampling strategy to ensure that they represented rural and urban settings, newly formed and established groups, and formal and informal group structures. Maximum-variation sampling is a purposive, qualitative sampling procedure that involves deliberately selecting a heterogeneous sample to observe commonalities in experience (Morse, 1994; Patton, 1980). This sampling approach maximizes the likelihood that all unique variations of a phenomenon are documented and seeks to provide as much different information as possible (Patton, 1980). It is particularly useful when exploring abstract concepts (Morse, 1994) such as group change and evolution. The groups had been in existence between 1 and 9 years, and membership lists ranged in size from approximately 10 to 140 members. The members were not all active members (i.e., some did not attend meetings on a regular basis). Most groups met on a monthly basis or less frequently. Seven of the nine groups were considered active (i.e., they met on a regularly scheduled basis). The other two groups were not active (i.e., they met sporadically, infrequently, or not at all). Twenty unrelated parents (10 mothers and 10 fathers) of children with special needs were recruited from these nine groups for individual interviews (see procedure below). Fathers were included to ensure that both fathers and mothers perspectives were obtained. There is a long-standing tradition of including only mothers in research studies, and we wanted to guard against this bias. Fathers constituted approximately 20% to 25% of the groups members (ranging from 0% in one group to a high of 50% in another group). Interview participants ranged in age from 20 to 49 years. Most of them (60%) had graduated from college or university and had spouses (55%) who had graduated from college or university. Sixty-five percent of the families had a family income of $30,000 or more (35% had a family income of $60,000 or more). Their children with special needs ranged from birth to 18 years of age, with the majority (65%) being younger than 6 years of age. The children had a variety of health and development problems, including cerebral palsy (45%), communication problems (15%), various syndromes (10%), and acquired brain injury (5%). Secondary health or development problems included developmental delay (70%), learning disorder (30%), seizures (20%), behavior problems (15%), hearing impairments (10%), and visual impairments (10%).

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Procedure
As stated above, two parents on the research team had extensive experience with parent self-help groups. With their assistance, the research coordinator contacted group leaders to solicit the participation of their groups and to recruit individual members for interviews. The group leaders were told that we wanted to interview individuals who varied in (a) the level of their involvement, (b) the length of time they had been involved with the group, (c) the regularity or frequency of their attendance, (d) the age of their child with special needs, (e) their general attitude toward the group (both positive and negative attitudes were desired), (f) their level of knowledge about issues, and (g) gender (both mothers and fathers were desired). Group leaders generated a list of potential participants based on the above criteria, which was given to the research coordinator. The group leaders had previously notified group members by phone or in writing about the study and had informed them that they might be asked to take part. Only 3 of 23 people contacted declined to participate (they were unavailable on the day the research coordinator was visiting their city or town). The research coordinator then called to set up convenient interview times. A total of 12 group members and 8 group leaders were interviewed. The study protocol had received formal ethical approval from McMaster Universitys research review board. Consent forms were completed by group members (when group observations were held) and by the individuals who were interviewed. A majority of the participants were interviewed in their homes by the research coordinator, who was a trained and experienced interviewer. The research coordinator also interviewed 4 participants over the telephone, due to preference or circumstance. Each interview took approximately 1 hour to complete and was audiotaped. Word-for-word transcriptions of the interviews were made. To ensure accuracy, two individuals (a professional typist and the interviewer) were involved in the transcription process. Informant confidentiality was ensured by deleting names and identifying information from the transcripts. Transcripts were shared only with the person who took part in the interview. Because group leaders passed on the names of many more people than were actually interviewed, group leaders were unaware of which members actually took part.

Data Collected
Data were collected through individual, semistructured interviews with parents and field notes from the observation of group meetings. According to Fiese and Bickham (1998), there are four basic types of qualitative methods: in-depth interviewing, participant observation, textual analysis, and document analysis. The first two of these methods were employed to collect the data for this study (document analysis also was used, but that information is not presented here because it did not pertain to the goals of this article). The interview probes were open-ended questions that explored individuals perceptions of group style and functions, personal involvement in the group, satisfaction with the group, and suggestions for change. The interview protocol was reviewed for ease of comprehension, completeness, and flow of the interview and was piloted with three parents who were not involved in the study. The key openended questions did not change over time, but the specific prompts did evolve based on what previous participants had said.

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The research coordinator or one of the investigators observed the meetings of six different groups. Because most groups held meetings once a month or less, and some groups were not meeting regularly, we were able to observe only six meetings within the study period. Detailed field notes were made after these meetings, using established guidelines. The group leaders were asked whether the observed meetings were typical of the groups meetings. Five of the six group leaders indicated that the observed meetings were very typical. The other group had to call a special meeting that was not felt to be typical.

Analysis of Themes
Qualitative data analysis is a recursive process that involves coding segments of text based on key concepts, clustering these codes into themes, and revisiting these themes several times to delineate and refine them (Boyatzis, 1998; Spekman, Goldberg, & Herman, 1992). Interview transcripts and field notes were analyzed to identify significant ideas related to the organizational aspects of the groups and issues faced in their evolution. The process was an inductive one, following a grounded theory approach (Strauss & Corbin, 1994). The aim was to develop a model or theory that could be used to guide future research on the organizational characteristics and evolution of parent-led self-help groups. After reading and studying the initial transcripts, a textual coding scheme and principles of coding were developed to identify and label meaningful clusters of text. Discussion and comparison of observations by the researchers were used to achieve a consensus about emerging concepts. The research coordinator and a member of the research team then separately coded text segments in four transcripts. The two coders reached an agreement of 84% after the fourth transcript, at which time the coding scheme was fully and clearly developed. The research coordinator then coded the remaining transcripts. All coding was done within a 3-month period to minimize coding drift. In addition, coding agreement was checked on three occasions to ensure the stability of coding over time. Coded transcripts were entered into The Ethnograph (Seidel & Clark, 1984), a computer software program that can be used to sort segments of text into analytic categories. The individuals who were interviewed were sent their own transcripts and an accompanying letter, which asked them to review the transcript and call the research coordinator if anything was wrong or missing, or if they wanted to clarify or elaborate on any part of their interview. No negative responses were received. Observational notes of the meetings were sent to the group leaders, who verified that the recorded observations accurately reflected the meetings. In addition, a written summary of the interpreted data (i.e., the study themes) was sent to group leaders, who distributed this summary to group members. This member-checking process confirmed the trustworthiness of the interpreted data (Lincoln & Guba, 1985).

RESULTS
The aim was to extract themes related to the structural and process characteristics of groups and the issues they faced over time. The arising themes are described with

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respect to (a) group philosophy and activities (the purpose and functions of the groups), (b) group structure (leadership, membership, and attendance), and (c) cohesion and empowerment (process characteristics). Quotes from participants are provided to support the key emerging themes.

Group Philosophy and Activities

The first two themes describe the philosophy and climate of the groups. These themes stress the strengths and abilities of both parents and children and the importance of parents meeting their own needs and desires with respect to the groups activities. Positive focus. Participants described a positive group climate. Members focused on the strengths of their children rather than on their weaknesses, and on what they as parents could do and accomplish rather than on the obstacles facing them. By believing in the abilities of group members, the groups provided a sense of social support that was felt to be empowering:
This is a very positive group. . . . [We] never dwell on the negative but [on] what we can do to improve, how we can advocate for our children. We try to give people belief in themselves. We very much try to support people [to show] that their decisions are really important. . . . We try to support their strengths rather than their weaknesses.

Balancing group activities to meet the needs of parents. The groups philosophies varied considerably. For some groups, the main focus was emotional support. For other groups, the reason for being included information, education, and/or advocacy. At least half of the groups identified advocacy as a specific part of their purpose and recognized the strength gained from sharing information and bringing about social change. Regardless, the core idea was that groups were there to meet the needs of members. The following quote illustrates parents needs for information and emotional support: Parents connecting to get information, guidance, and friendship; the things they need to help them do their jobs as caring parents. The philosophy and purpose of the group determined the type of activities engaged in by the groups. The meeting structure, therefore, varied considerably across groups, ranging from mainly business meetings dealing with advocacy issues and project planning to very informal discussions and sharing sessions. Many groups had a mix of both business and discussion/sharing, and also some meetings with speakers. Overall, groups engaged in information sharing/education, emotional support, advocacy, and funding activities. Different ways of doing things were required to satisfy the needs of different group members:
If you were having mostly speakers, that was one thing that a lot of people who came to it, I guess, didnt want to deal with a lot of very emotional issues. Then if you were only having more private meetings, sharing times and things like that, there were some people who felt that was a waste of their time because they had already gone through that.

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Thus, achieving a balance of business and sharing was an important issue for many group leaders. To meet the different needs of members, some groups held a few meetings each year with invited speakers, whereas other meetings were for discussion/sharing between the members. Funding and fund-raising. Fund-raising efforts ranged from being a major focus of the group to a very small part of the groups activities. Some groups had only small expenses related to supplies, mailings, and meetings, which were usually covered by a membership fee and/or some fund-raising activities. Other groups had larger expenses, such as costs for publishing a newsletter, maintaining a phone line, providing a computer database and resource area, engaging in advocacy activities, and/or running social activities. To cover expenses, some groups saw the advantages of being connected to another community organization that provided resources:
We have a post office box up there. We have our meetings there. They charge us nothingwe get it for free. . . . Several of us sit on the board of directors and the board of trustees. And we work cooperatively. We have a relationship.

Changes in philosophy and activities over time. The activities of the groups changed over time to meet changes in the needs of participants and to reflect shifts in the philosophy or purpose of the group. Over time, several groups shifted their meeting style from information/education to more emphasis on sharing and discussing issues and concerns: We felt we werent meeting that need, so we started having fewer information meetings and more just kind of get-togethers . . . giving people the opportunities just to share what theyre going through or whatever. In one group, the leaders decided to adopt a new style, recognizing that the members themselves were the experts. They decided to share information between themselves rather than call in speakers. They began to view themselves as the people with the information, people capable of getting the information they needed, people who no longer had to rely on outside experts:
So we just really acknowledged that we could get what we needed from ourselves. We are the professionals. We dont need other people coming in and preaching to us because were just amazing, and we dont need anybody else to do that for us.

Other groups began to place more emphasis on community action and advocacy as members saw that together they could make a difference in the lives of children with special needs: I really do believe strength for any of us lies in joining all of our voices together . . . and not feel so isolated.

Leadership, Membership, and Attendance

The importance of leadership. No matter how the group was organized, participants recognized the need for leadership: If you dont have a leader . . . things sort of fall apart. The leaders were viewed as motivators, organizers, and contacts for the group. Consequently, the style and activities of a group were greatly influenced by the leaders. The specific tasks taken on by the leaders varied, depending on the

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particular people who assumed these roles. The tasks included phoning members before a meeting, organizing and running meetings, finding speakers, maintaining records and documents for the group, dealing with correspondence and phone calls, organizing advocacy activities, planning social and/or fund-raising events, and acting as a contact person. Some larger, more organized groups had committees for activities such as phoning members, fund-raising, or advocacy. Reluctant leaders. For a parent self-help group to continue to exist, participants noted that one or two key individuals need to act as leaders and organize group activities and commit to this role over a period of time. Some members became leaders reluctantly. They would have preferred to be a group member but realized that the group needed someone to provide leadership:
I wanted to be more of just a participant and . . . it seemed that if I didnt call a meeting or if I didnt research or I didnt get the film or I didnt make a phone call to try to get a speaker, then there was no meeting.

Encouraging new leaders. The issue of leader burnout was raised by many participants, particularly by members of groups that were not currently active. In most groups, a small number of members did most of the work: You know, theres only like a quarter of us, maybe a handful, that are actually involved. Most groups struggled to find ways to bring more people into leadership roles. This required planning and personal reflection by the current leaders. In groups that had survived and grown, there was an active effort by the original leaders to encourage and support other members to take on leadership roles:
Im learning very hard to give the responsibility away and let them handle it. Its a process and a really long one, and it was extremely difficult that first year that we elected a new president. That was really tough, but its happening and Im really happy that it is. . . . A lot of things are going to be handled by other people now, and I feel good about that.

In some groups, however, despite the best efforts of the leaders, the members were not willing or did not have the time to take on the leadership responsibilities. These groups stopped meeting: I dont see it going anywhere unless myself or the other person who was involved in the group originally get that stamina, that drive, to try and get it going again. Attracting new members. After the initial start-up phase, all groups faced the more difficult stage of maintaining membership. Most of the groups had experienced a plateau in membership and a decrease in the number of people attending meetings. Other groups had survived the problems inherent in maintaining a group and had moved into a sustaining phase. Other groups had not survived and were no longer meeting regularly. In all groups, the issue of attracting new members was an ongoing challenge. Members recognized that parent self-help groups were not for everyone, but they also believed that many families would benefit from belonging to such groups. This was an ongoing dilemma for many members because they wanted to see the groups go on but also realized that other parents might not have the time or energy to be involved or might not see the same value in the groups: They dont have the time or

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energy, or Im not sure what it is, what the answer is. We tried reaching out and getting other people involved, but we had no luck. Most groups tried different strategies to attract new families, and many had connections with agencies that would refer parents to them. One contact person identified the need for the personal touch when trying to attract new members:
Youve got to establish the relationship and encourage them and support them and help them do it, but its got to be done in person. You can send a hundred thousand mailings and its not going to be effective, but you can make a phone call and that can be worth a lot more.

Cohesion and Empowerment

Initial excitement. When most of the groups were founded, there was a flurry of activity. Founding members felt excited and committed: Everyone realized, Yes, we can do this on our own, and got all charged up. So that was the little seed, and thats . . . how it happened. Growth in a sense of belonging. The groups that had been meeting regularly for several years developed a sense of we, a sense of community and belongingness. Many group members also developed a broader perspective on their own situations over time:
By meeting as a group of people, we freely share our experiences, and although our situations may be different, over time a parent can see how other parents situations can fit with their own, and then we have a global perspective.

Growth in a sense of empowerment. Many participants commented that belonging to a group gave them a sense of empowerment and validated their experiences:
And theres a strength and an integrity and a commitment and bottom-line power that comes when you see people go through that situation. It just gave us the confidence that what we are thinking and saying ourselves was actually being voiced by other parents as well, that you were in [the group] speaking for a number of parents. . . . There were other people out there that had the same concerns and the same issues. In turn, that gave some validity to what you were doing. You werent really out in left field.

DISCUSSION
The nine groups in this study differed in their philosophies or reasons for being and, consequently, in their activities. Some groups focused on information provision, others focused primarily on emotional support, and others adopted an advocacy perspective (many combined a number of these purposes). Because group activities are tied to a groups philosophy, the amount of information sharing and emotional support provided through group activities was reflected in the groups general orientation. Our findings parallel those of Koroloff and Friesen (1991), who found great variation in the membership, format, and longevity of self-help groups for

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parents of children with emotional disorders, and of Chesler and Chesney (1995), who found diversity in the degree of organization and in the procedures for accomplishing tasks in self-help groups for parents of children with cancer. As in this study, the diverse activities undertaken by the groups were determined by the groups goals and by the commitment, energy, and talents of the individual members (Rollins, 1987). Despite the differences in the groups activities and specific purposes, a number of similarities emerged with respect to (a) overall group philosophy and activities, (b) the trend in their cohesion and sense of empowerment over time, and (c) issues dealt with in the life of groups (i.e., issues concerning membership and leadership, funding, and activity selection). These areas will be discussed in reference to what is known in the literature about these topics and, based on this analysis, a model of group evolution will be proposed. First, group members shared a similar positive focus on life, themselves, and their children, which allowed them to give strength to one another (see Riessman, 1997). According to Menolascino and Coleman (1980), self-help groups assist parents in learning how to value their childs worth and focus on their childs abilities. Self-help groups share the intrinsic, change-inducing property of altering belief systems (Lieberman, 1979). They alter the worldview from which a particular problem is examined and, as a result, are empowering and liberating (Humphreys & Rappaport, 1994). Asecond similarity in these groups was a growing sense over time of belonging, accompanied by a sense of empowerment. As group cohesion grew, members interests and activities shifted from a focus on their own dilemmas. They began to consider how they could be part of a shared experience to help others solve problems related to disability issues. Thus, the growth in a sense of belonging seems related to the political empowerment of members and a growth in the advocacy function of the group as a whole. A sense of belonging is often cited as an intrinsic property of self-help groups. The group becomes a primary group, that is, a group characterized by sympathy, mutual identification, and a common spirit (Olmsted & Hare, 1978). This strong sense of cohesiveness arises from the unconditional acceptance of group members (Lieberman, 1979). A third similarity was in the nature of the issues that the groups dealt with over time. Four recurring issues affecting the continued existence of parent self-help groups emerged from the interviews: (a) encouraging new leaders, (b) attracting new members, (c) obtaining necessary funds or assistance, and (d) meeting the changing needs of group members. According to Chesler and Chesney (1995), the major problems that groups encounter are finding and maintaining effective leadership and recruiting new members. Steele (1965) states that recruitment, funding, leadership, and the selection of group activities are all issues faced by newly forming groups. These issues appear to be present on a continuous basis. For a group to continue, these issues have to be frequently readdressed and resolved. Thus, it appears that self-help groups evolve through dealing with issues and coming up with solutions. Sometimes the challenges cannot be met or the desire is not there to rise to the challenge. Under these circumstances, groups may become inactive and disband. Group leaders often feel distressed when a group is at risk of stopping. However, it may be a characteristic of self-help groups that they begin,

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continue for a few years, and then stop. This may not be a significant problem because the groups that are now inactive did provide important support to their members in the past. In this way, disbanding may be seen as evidence that a group has met its aims, and not as evidence that the group has failed (Chesler & Chesney, 1995). In fact, Chesler and Chesneys study of 50 support groups (professionally or parent led) found that only 10% of the groups were in existence for more than 5 years. One purpose of qualitative research is model or theory building (Strauss & Corbin, 1994), and researchers such as Humphreys and Rappaport (1994) have called for more theory-driven investigations of self-help groups. Based on the themes arising in this qualitative study and the literature dealing with stages in the evolution of small groups, we propose a developmental model describing changes in the structure, process, and issues in the maintenance of self-help groups for parents of children with special needs (see Figure 1). It is important to realize that the model may not be representative of all self-help groups for parents of children with special needs, and it will need to be refined and extended through future investigations. The model outlines the structural and process characteristics of both starting and established groups, the issues that groups may encounter during the maintenance stage, and important sustaining factors that can assist groups in resolving the issues. When groups are unable to resolve the issues effectively, they disband. As shown in the start-up stage in Figure 1, the groups in our study began with good membership and high attendance at meetings, with their activities focused on information and/or education, and with feelings of excitement and personal empowerment on the part of members. These characteristics are reflected in the themes positive focus and initial excitement. At the maintenance stage, the groups showed a plateau or decline in membership. The members needs changed, and therefore, the activities changed. Some groups that were successful in maintaining participation began to focus primarily on sharing information and discussing issues between themselves. The burnout of leaders became an issue for some groups. Activities of advocacy and community action increased, along with a sense of political empowerment. There was a strong sense of belonging. These characteristics are shown in the themes changes in philosophy and activities over time, reluctant leaders, growth in a sense of belonging, and growth in a sense of empowerment. The associated challenges in the maintenance stage were attracting new members, encouraging new leaders, obtaining necessary funds or assistance, and meeting the changing needs of group members. These developments are reflected in the themes attracting new members, encouraging new leaders, balancing group activities to meet the needs of parents, and funding/fund-raising. Figure 1 also outlines three important sustaining factors that appear to be associated with the resolution of issues and thus the longevity of self-help groups: committed and effective leadership; community connections that provide needed funds, practical assistance, and/or referrals; and the willingness of group members to change activities to meet changing needs. These characteristics were displayed by the groups in this study that have shown longevity. The issues of leadership transition and development are important for all voluntary organizations (Chesler & Chesney, 1995). The literature indicates that effective leaders are those who anticipate changes in the needs of members and work to

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FIGURE 1:

A Developmental Model of Changes in Structure, Process, and Issues in the Maintenance of Self-Help Groups for Parents of Children With Special Needs

alter activities accordingly. They also recognize and deal with recruitment issues and involve members in activities, thereby providing them with opportunities to take on leadership roles. Leaders worry about how to pass leadership on to others. Leadership was successfully passed on in some groups by involving parents bit by bit in the activities of the group. In other situations, new leaders were not found, and the activity of the groups decreased, threatening the groups existence. A second factor that helps parent self-help groups flourish is community connections. To continue to exist, self-help groups need to develop connections with other agencies (such as childrens rehabilitation centers or hospitals), other parent organizations, and service providers in the community. All active self-help groups in the study maintained extensive connections with community agencies. Many groups received financial support or support in kind from agencies to help with mailings, newsletters, and photocopying. Members received referrals from agencies and felt that they could seek assistance from agencies and service providers as it was needed.

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A third sustaining factor is the flexibility of members. Members must be willing to adapt group activities to meet changing needs; otherwise, the groups will no longer be seen as useful by the members.

Implications for Service Providers and Parents

Parent self-help groups provide important benefits to members. The encouragement and facilitation of parent-to-parent support is a key element of the familycentered model of service delivery (Phillips, 1990; Rosenbaum et al., 1998), which is now widely accepted among service providers in pediatric rehabilitation. Therefore, service providers should support the development and existence of parent self-help groups in their communities. They can do this by actively encouraging parents who have children with special needs to become a part of these groups and by providing financial, physical, and other types of resources to groups (Boukydis & Moses, 1995). For example, service providers can provide meeting locations free of charge, assist with photocopying costs, provide secretarial support, and mail educational flyers and materials. They also can facilitate working relationships between parent-led groups and parent resource centers located within service organizations. One out of every three self-help groups is started with the help of a service provider (Rollins, 1987). Service providers can be a useful source of advice to parents thinking about establishing a self-help group (Boukydis & Moses, 1995). Service providers can provide useful practical information and advice in many areas, including how to obtain funding, recruit parents, chair meetings, organize fundraising events, and organize information and group materials (Coffman, Edwards, & Piskosz, 1994). Service providers can give advice on how to facilitate group functioning, for example, how to create an atmosphere in which parents feel comfortable to disclose feelings and concerns, and how to deal with troublesome issues with respect to group dynamics or members roles. However, service providers should be careful to respect the self-help function of the group and to maintain a resource role only so that members do not feel the threat of being taken over by professionals (Chesler & Chesney, 1995). With budgetary constraints affecting our health care system, parent self-help groups are increasingly being seen as a valuable adjunct to services provided by organizations (Humphreys & Rappaport, 1994). They are viewed as a significant and low cost way of providing information and social support to parents of children with special needs (Rollins, 1987). Furthermore, longitudinal research has shown that there is a link between participation in self-help groups and the reduced use of costly professional services (Humphreys, 1997). It has been predicted that self-help groups will flourish under corporately controlled health care, where the profit motive will drive organizations to seek low cost ways of meeting parents needs (Jacobs & Goodman, 1989). Within this context, the information from this study (about the key structural features of groups that display longevity and the way that groups change over time in response to issues) can be used by administrators, service providers, and parents to decide whether and how to support the establishment and operation of parent self-help groups. Parents involved with groups will find the information from this study useful in attracting new members. Nonmembers may not realize the multiple activities and different aims of groups. They may see self-help groups as a form of group

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therapy and overlook the advocacy and information-sharing aims adopted by many groups. When nonmembers gain an understanding of the wide scope of benefits and the particular philosophy of their local group in the context of other groups, they can make a more informed choice about whether to join. The information from this study also can be useful to parents planning to set up a self-help group. The information can help parents to be aware of the issues that they likely will face and assist them to make wise choices about how to structure their group. In this way, parents can be proactive in dealing with the four types of issues that may arise: leadership issues, membership and/or attendance issues, practical issues, and changing needs of members.

Implications for Future Research

Few studies have examined the issues faced by parent self-help groups. The reasons include difficulties in using experimental designs, gaining access to groups, and involving parents due to changes in group membership. Consequently, we know relatively little about the evolutionary stages and issues faced by parent self-help groups. This study has laid some needed groundwork by exploring the organizational and evolutionary aspects of groups using a variety of qualitative methods. The use of interviews and group observation has provided insights into the stages that groups progress through, the organizational characteristics associated with longevity, and the difficult issues that might arise. This study demonstrates the utility of a qualitative approach to understanding self-help groups (Humphreys & Rappaport, 1994; Tebes & Kraemer, 1991). A developmental model has been proposed that describes changes in the structural and process characteristics of groups and the issues they often face to continue to exist. This model will be useful in generating questions for further research (e.g., which of the sustaining factors is the most important in ensuring group maintenance?). Future studies of the organizational aspects and process issues associated with group longevity will provide important information for service providers, managers, and policy makers, and most important, for parents themselves.

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Gillian King has a background in social psychology. She is an honorary lecturer with the Department of Occupational Therapy at the University of Western Ontario, a research fellow in the Psychology Department of Huron College (at the University of Western Ontario), and an investigator with CanChild, based at McMaster University. Debra Stewart has a background in occupational therapy. She is an assistant clinical professor in the School of Rehabilitation Science at McMaster University and an associate member of CanChild. Susanne King has a background in psychology and sociology and advanced training in research methodology. She has a faculty appointment with the School of Rehabilitation Science at McMaster University and is a research coordinator with CanChild. Mary Law is a pediatric occupational therapist with doctoral training in health and social planning. She is a professor in the School of Rehabilitation Science and the Department of Clinical Epidemiology and Biostatistics at McMaster University and is a codirector of CanChild.