Abstract: Contemporary studies of social support have been criticized by disability studies scholars for portraying disabled women as passive recipients of care and support. This portrayal fails to recognize disabled women's strengths and contributions to their social networks. This qualitative study sought to gain a nuanced understanding of the processes of social support network mobilization used by a group of eight older African American women who recently had strokes. Research methods included in-depth thematic interviews and the construction of social network maps. Findings indicate the conventional categories of social support fail to capture the complexity of older disabled African American women's experiences. An alternative framework for understanding social support is presented that incorporates personal strengths and socio-political barriers.

I. SIGNIFICANCE OF STUDY

Economic, social, environmental and attitudinal barriers make community living a constant struggle for disabled people (Charlton, 1998; Louis Harris and Associates, 1998). The sociopolitical barriers to community living are exacerbated because many disabled people lack access to the social resources needed to address basic living needs (Nosek, Fuhrer, & Potter, 1995; Kaye, 2000). While individual impairments are used to rationalize dependency, disability, and institutionalization; increasing evidence points to the availability of supportive resources and access to social support as key factors related to community living, participation and perceptions of quality of life (Hersch, Spencer, & Kapoor, 2003).

The need for social support is particularly pronounced during major life transitions. The purpose of this study was to gain an understanding how a group of older African American women mobilize their social networks to obtain needed social support during one such major life transition, returning home after a stroke. By focusing on the social experiences of women who have recently experienced strokes, the study sought to explore the dynamic process of how support is experienced and used to meet a variety of physical and psychological needs. A review of the literature will highlight the need to explore the process of social network mobilization by disabled women.

II. LITERATURE REVIEW

A. Social Network Literature

An extensive body of literature shows that strong networks of social support have a beneficial impact on disability transitions (Mendes de Leon et al., 1999), adaptation to life changes (Cohen et al., 1985), and quality of life (Achat et al., 1998). Extended social networks are sites of strength and resilience as they allow the exchange and pooling of resources during times of need (Taylor et al., 2001). Born of cultural ties to Africa and the legacy of overcoming slavery and segregation, African Americans have developed a social structure based on interdependent and extended kinship ties (Triandis, 1994, 2001). This emphasis on interdependence and the use of multiple sources of social support may serve a protective function by allowing the social network to flexibly adapt to changes caused by the on-set of impairment (Johnson, 1995). Even when confronted with social and economic risk factors that emerge from the intersection of racism, ageism, and sexism; African American women who have had strokes have lower rates of institutionalization than White women (Chapin, 2001; Administration on Aging, 2002). This is a strength within the African American community and may have implications for women in general, and for disabled women more specifically. In spite of the positive influence of social networks on community living and the inherent strength in the social fabric of African American women, their experiences and needs are often neglected in research (Blake and Darling, 2000).

B. Social Networks as Analytic Concept

In order to examine the need for and influence of social supports in the lives of disabled women, there is a need to first critically analyze existing research in this area. Although there are many studies, overall, the social support/network research is plagued by a lack of consistent and clearly operationalized definitions (O'Reilly, 1988). To address this ambiguity, Berkman et al (2000) described a framework of social relationships that situates social networks within the broader social structure and operationalizes key concepts. A social network is an analytic concept that is used to describe the linkages between individuals. Social networks have two dimensions, structure and function. Structure refers to all the people with whom one has an interpersonal relationship. It is subdivided into formal and informal relations. Informal relations are close personal contacts, such as family and friends. Formal relations include those individuals with whom one interacts as part of public obligations, for example, health care workers and community service agencies (Berkman et al., 2000). While formal and informal relations represent distinct groups within these operational definitions, in reality the lines often blur. For example, due to the intimate nature of the personal assistant (PA) relationship, a PA may be identified as both care-provider and friend, an issue not often taken into account in existing quantitative studies of social networks (Saxton et al., 2001).

Function is the second dimension of social networks and it represents the purpose of the interactions. Social support is one such function and of primary interest in the current study. Social support is not a homogeneous category but is subdivided into three types: 1) emotional (such activities as listening, providing reassurance or a shoulder to cry on), 2) instrumental (physical and financial assistance), and 3) informational (the provision of advice, references, and referral for services) (Due et al., 1999; Mendes de Leon et al., 1999; O'Reilly, 1988; House & Wells, 1978). Due to its scope and conceptual clarity, Berkman et al.'s (2000) framework is used to guide the current study. 

C. Social Support Critique from Disability Community

Even when the conceptual characteristics of social networks and social support are clearly operationalized there continues to be controversy surrounding how to interpret social support research findings (Morris, 1991; Turner & Alston, 1994). For example, while the literature emphasizes the complexity of disabled people's use of social support, social support measures often associate the use of assistance, especially physical assistance, with dependency and burden of care (Mendes de Leon et al. 1999). This creates a double standard in which social support is deemed as protective for the general population but is viewed as a threat for disabled people, their care-partners, and the entire social welfare system.

Additionally, social support studies with disabled people have been criticized for failing to assess the meaning that the support holds for the person and instead predefining this meaning as the need for physical, financial and emotional assistance (Eliason, 1998; Gignac & Cott, 1998). The majority of social support studies measure how much support is provided, rather than how individuals perceive and use the social support they receive (Barker, Morrow, & Mitteness, 1998). This is a significant limitation because research shows that positive health and wellness outcomes are more closely related to perceived than received support (Logsdon et al., 2000; Shye et al., 1995). Perceptions of support are in turn strongly influenced by social and cultural factors.

Cultural influences on older African American women include: Afrocentric ideals of communalism and interdependence (Belgrave & Jarama, 2000); an obligation to community advancement through their strength, independence, and service to others while simultaneously subordinating their own needs for the greater good (Hill, 1990; hooks, 2000); and the strength of the Black church and spirituality as a driving force in resisting oppression and segregation (Belgrave & Jarama, 2000). The lives of older African American women with low income are further influenced by social factors, including: racism, poverty, and limited access to health insurance and preventative care. By examining the social network and social support with theoretical frameworks that focus the lens of inquiry on social and cultural factors, a more contextualized understanding of disabled women's experiences can be obtained.

D. Theoretical Groundings

Feminist theory and feminist critiques of the social model of disability have drawn attention to how interconnections among multiple minority statuses such as gender, race, age, and disability shape individual experiences. These influences are intertwined and embedded in the social fabric (Blakenship, 1998). Griffiths (1995), uses the analogy of a web to explore how individual "identity markers" are socially interpreted and influence disabled women's social relationships. The opportunities for community participation and access to resources are shaped by the woman's position in the social, cultural, and economic hierarchy. Disabled women have "historically been at the bottom of the totem pole relative to a number of [these] status factors" (Taylor, 2001, p.44). Disabled women have vulnerabilities and strengths that shape their social experiences.

Issues of identity and self-definition are inevitably tied to one's social experiences and expectations (Griffiths, 1995). Although feminist and disability scholars contend that the categories of disability and gender are socially constructed (DeBeauvoir, 1989; Thomas, 1999; Wendell, 1996), their influence on self-identity is tenacious. Therefore, while women are not biologically determined by their physical, psychological and biological traits, socially constructed interpretations of these traits strongly influence the nature of interpersonal relationships (Griffiths, 1995). Many disabled women report experiencing this influence as negative stereotypes that limit the understanding and nurturing of their womanhood (Nosek et al., 2001).

Disabled women often lack a positive cultural identity and many never experience the opportunity to question the social constructions of disability and gender. Disabled women may internalize negative definitions of disability, devaluation, and dependency because they were never afforded the opportunity to think of disability as anything other than a deficit (Thomas, 1999; Saxton et al., 2001). As a result, they may miss out on the transformative power that can come from a collective identity, which fosters an awareness of strengths (Vernon, 1996). In spite of the many challenges faced by disabled women, they are not hapless victims. Research on resiliency and reciprocity provides a framework for understanding disabled women's strengths.

Resiliency research indicates that women are particularly good at mobilizing needed support even when faced with extreme hardship (Poorman, 2002). Extensive research shows the importance that social relationships play in women's lives (Liang et al., 2002). Women tend to value relationships highly and define their lives in relational and reciprocal terms (Taylor et al., 2001; Jordan, 1997). To date this line of inquiry has not been extended to understanding disabled women's social experiences. Focusing on relationships, especially reciprocal relationships, may offer an alternative to the dependency-laden interpretations of disabled women's social support experiences (Roe et al., 2001). The focus on strengths represents a theoretical shift towards a strengths perspective (Lewis, 1996; Saleebey, 1996). This perspective emerged from feminist social work and is predicated on the belief that all people have strengths, all environments have strengths, and the impetuous for change comes from the mobilization of these strengths (Chapin, 2001). Targeted strengths-based research can help determine the role that relationships within social networks play in disabled women's ability to deal with major life transitions.

E. Methodological Considerations for Studying Disabled Women's Social Networks

Social network research has been dominated by quantitative analysis, which often fails to elucidate individual's experiences within the network. Disability scholars have challenged the ability of existing quantitative measures to reflect their lived experience and issues (Hahn & Hegamin, 2001; O'Day, McLean, & Killeen, 2002). To appreciate how social networks change as a result of major life transitions, there needs to be a greater understanding of the processes involved in social network functioning and reorganization across the life span. Qualitative methodologies in disability studies have been particularly useful in clarifying the interdependence of human experiences, socially constructed cultural attitudes, and public policies that shape the lives of disabled women (O'Day, McLean, & Killeen, 2002) and can fill the gap in our understanding of the social network mobilization process. Given the important role that relationships within networks of social support play for women it is important that program developers, policy makers, and communities understand these phenomena in greater detail.

III. METHODOLOGY

A. Research Question

This study integrated social network concepts with a strengths perspective (Saleebey, 1996) to gain a deeper understanding of factors that impact on community participation in older African American women who have experienced strokes. The social model of disability (Oliver, 1993), with its emphasis on disabling influences in the physical and sociopolitical environment, also shaped this study's focus, methods, and analysis. By integrating these theoretical perspectives, this study sought to address the following research question: How do older African American women mobilize their social networks to promote community participation and need fulfillment after a stroke?

B. Design

This qualitative research study was conducted with eight older African American women to gain an understanding of how women experienced support within their social networks after a stroke. The study was developed as part of a larger study funded through the National Institute on Aging that examined role development and resource management of older adults who returned home after a stroke. Social networks were identified as an important factor that influenced participants' abilities to stay in their homes and participate in roles of choice. The current study sought to better understand this influence and the process of developing and mobilizing such networks.

A comparative case study approach using multiple qualitative methods was used to ensure trustworthiness and triangulation of data (Merrian, 1991). Data from each participant were analyzed as an individual case. Cases were compared and contrasted throughout the study. Inductive and iterative data analysis was used to understand the social support experiences of older African American women after strokes.

C. Sample

1. Sampling Strategies

Participants were purposively sampled from a potential subject pool of fifty-two older adults who were participating in the larger study on role development. The potential participants were older adults from a large metropolitan city in the American Midwest, who had experienced a recent stroke and were returning home with functional limitations in one or more activities of daily living. The stroke represented a significant change in functional status and community living. All participants were followed as part of the larger study for at least eight months after hospital discharge.

For this qualitative inquiry, the current study focused on African American women's experiences of support. Additional stratified purposive sampling based on: 1) length of time at home since the stroke to address temporal influences on social support experiences, and 2) their social network type was used to select participants. Participants were selected to represent three significant time periods in the stroke recovery process: 1) less then two months, when the emphasis tends to be on recovery of function and adjustment to on-set of functional impairments; 2) three to four months, when a routine has generally been established but there is still the potential for functional improvements; and 3) more than eight months, when functional recovery has generally tapered off and the focus is on the transition to life with long-term functional impairments (Dombrovy et al, 1987). Participants were also stratified according to network type. At least one participant with each of the following networks types was purposively recruited for this study: 1) kin (composed mostly of relatives at high level of intimacy), 2) family-intensive (composed over-whelmingly of adult children at lower levels of intimacy), 3) friend-focused (majority of relationships are friends but includes some family), and 4) diffuse (a combination of loose ties to friends and family) Litwin and Landau's (2000).

2. Participant Demographics and Background

The participants ranged in age from 61 to 76 with a mean age of 66.5 years. Two of the women lived alone, one lived with her husband and an adult niece, and five lived with adult daughters and grandchildren. All of the women reported mobility impairments (five used wheelchairs, three used canes), decreased independence in basic activities of daily living, such as dressing and bathing, (three performed the tasks independently but required extra time and effort, one required minimal assistance, and three required moderate assistance). Three of the women had minor cognitive deficits as a result of their strokes impacting primarily memory and concentration. Four women reported minor speech changes but these did not limit communication. Four of the women reported significant co-morbidities that impacted on functional performance prior to their strokes, including: renal failure, bilateral above knee amputations and severe asthma, breast cancer, and obesity with associated mobility impairments.

D. Methods

This study involved two primary methods of data collection: 1) construction of social network maps, and 2) in-depth thematic qualitative interviews with detailed field notes.

1. Social Network Maps

Participants completed a map of their social networks based on Antonucci & Akiyama's (1987) Convoy Model. The map consisted of three concentric circles, similar to a bull's eye. The participant entered the names of members of their social network in the different circles depending on the level of intimacy. The social network maps provided: 1) information on structural social network variables including number, type of relationships, and level of intimacy; 2) a graphical depiction of the social network from the women's perspective, and 3) a foundation for in-depth qualitative exploration of support experiences.

2. Thematic Qualitative Interviews

The in-depth thematic interviews were 1_ to 3 hours in length and included both semi-structured questions and unstructured probes. Questions were formulated to elicit information on the participants' interactions and perceptions of their social networks. For example, for each person identified in the social network map, the woman was asked: 1) Tell me a bit about your relationships with x? 2) What do you get out of the relationship? 3) What does the other person get out of it? and 4) Has the relationship changed over time or since your stroke? The participants were, also, asked to describe specific examples of when she needed instrumental, emotional, and informational support. Attempts were made to schedule the interviews to ensure the participants' privacy, in seven of the eight interviews there were significant interactions between the participant and family, friends and service providers. Field notes were written on these social interactions. This provided rich "real life" data on the participants' interactions with members of their social networks.

E. Data Collection

Potential participants were invited to be a part of this qualitative study and the study procedure were described. All interviews were done in the participant's homes and audiotaped with the participants' written and verbal consent in accordance with IRB protocols. All data collection was conducted and transcribed verbatim by the primary researcher.

F. Analysis

Interview data were triangulated with social network maps, and field notes. Each method of data collection obtained information with different foci, increasing the richness of the interpretations. Using open coding, the interview transcripts were analyzed by the primary researcher and two members of the research team with qualitative research experience. Findings were synthesized and a second level of analysis was conducted and reviewed by the research team. Individual cases were compared and contrasted throughout the course of the study. Themes and patterns that emerged from this process of inductive analysis were used to address the research questions (Denzin & Lincoln, 2000).

IV. RESULTS

Data from this study suggest that the usual categories of social support: 1) emotional, 2) instrumental, and 3) informational; do not adequately capture the nuances of the women's experiences. Instead, the findings of this study point to three distinct yet interrelated levels of support: 1) basic survival, 2) peace of mind and validation, and 3) thriving. All three levels of support can include emotional, informational, and instrumental components. The following section describes these levels and their relationship to experiences of support.

1. Survival Support

At the most fundamental level was support that ensured basic survival and reinforced their abilities to stay in the home. Upon first returning home after their strokes all of the women identified functional impairments that limited independent performance of activities of daily living, such as dressing, bathing, and meal preparation. Family members were identified as the primary providers of survival support and were more likely to live with the women and included: daughters, husbands, and grandchildren. Adult sons were more likely to provide financial support or other supplies.

Another primary source of survival support was paid care providers. Personal assistants provided through the local Department on Aging are called homemakers and all of the women had homemaker services at some point after returning home. Betty described a typical scenario of homemaker services: "I get help from the [homemaker] agency 5 days a week...to help me fix the food and wash clothes and clean up and make the bed up."

Homemakers played vital roles in the provision of survival support. Velma recognizes the important role her homemaker played in her survival in the home, "She gives me a lot of support. On the days she don't come, I'm lost." Just how lost Velma would be without the homemaker was evident in her interaction with her physical therapist described in the following field-noted passage:

The physical therapist arrived for his appointment and learned that the subject was experiencing dizzy spells and had fallen the previous night. He questioned her safety and ability to live alone. He called her case manager. He interspersed the discussion of his serious concerns for her safety with leg extension exercises, which seemed to trivialize both activities. His final recommendation was that she stay in bed when homemaker not there.

Velma had only been funded for four hours of homemaker services a day. Clearly Velma's homemaker played a vital role in her basic survival because if the homemaker did not come or Velma followed the therapist's recommendation she would remain in bed for more than twenty hours per day. This passage also emphasizes how gaps in the social welfare system, like the underfunding of homemaker services, force disabled people into situations that threaten their safety and survival.

Rose, also, indicated the primary importance of her homemaker by placing her in her social network map at the same level of intimacy as her children and old friends. She discussed how both her daughter and her homemaker paid attention to her survival needs but while her daughter was focused on physical health and safety, the homemaker also addressed Rose's need for emotional support:

Well the homemaker is here and we talk, you know. My daughter she works and when she comes home, she's tied up in a lot of stuff...She don't have as much time to talk like the homemaker and I talk...'cause she's very busy with something ... but she watches out for me. She makes sure I don't be doing nothing on my own...she's afraid that I might fall or something.

Survival support was not confined to issues of self-care and safety but also extended to community participation issues, such as: access to housing, transportation to appointments, and access to medication. Opal, who identified paying for medical bills and prescriptions as a major life stress, described how her pastor provides emotional and instrumental support that help to maintain her survival needs of access to medication and stress relief,

My pastor...say, 'Now whatever you need momma you let me know. Cause I know y'all just getting the pension check every month ... and it don't go too far.'...He help me with my medicine every month. Every month. He said, 'Don't worry about it momma, you just let me know. I don't want you going one day without your medication. Not one.'

This passage indicated that Opal was receiving a variety of supports that helped to ensure not only her physical survival by providing needed medications but also her emotional survival by helping her to deal with medical creditors and hospital bill collectors.

In contrast, Hattie described how the lack of coordinated services translated to a breakdown in her access to survival support:

The doctor ...give me an appointment for rehab. Then she give me another little application for bus service... I'm thinking all I do is call and tell the bus company pick me up...I call one, they wasn't at home. I call the other one, recording. I call the third one, 'we not picking up until we get paid.' Call the fourth one, they going to call back. They never do...Finally one be able to pick me up... then I call rehab back that I finally got bus service. Then the girl said that they didn't have any room. I get mad. Cause y'all should have given me the bus service from the beginning. It took me two weeks to get a bus then I call you back and you tell me I don't have a place.

Clearly survival support was important to participants and the frustration of unmet survival needs was evident in Hattie's narrative. An over-emphasis on survival was also disempowering and an actual barrier to seeking needed support, as reflected by Velma:

Everyone's controlling me. Seems like everyone's controlling my life like my family and the therapists. I don't feel like I have much control of my life...So I try to do what I can on my own and try not to bother them...because I want them to feel that I can do some things on my own or they'll feel like I shouldn't be living on my own.

This description emphasized how asking for survival supports can serve the opposite purpose by causing others to doubt whether she should be living independently at all. In this case, Velma described a "don't ask, don't tell type" strategy so that she did not call attention to her impairments. Even with this strategy, Velma described how others made judgments about her ability to live independently based on her physical functioning. Thus, asking for survival support, or even showing signs of physical limitations, can be threats to basic survival choices for participants.

All of the women talked about how difficult it was for them to ask for help and how they tried to minimize requests because, as Rose describes it, "I don't want to be no kind of hindrance to them." While the women tried to minimize their help-seeking especially in areas that extended beyond survival support, they expressed dissatisfaction with the emphasis on survival support which they perceived as unidirectional, coming from others to them.

2. Peace of Mind/Validation Support

The second level of support moved beyond mere survival by providing the women with opportunities to achieve a measure of peace of mind and validation. The women spoke of this type support as a way to ward off depression and isolation.

At the time of her interview, Joyce was on the waiting list for senior housing. Since getting out of hospital, five months earlier, she had been alternating her residence between the homes of two of her daughters, creating tremendous instability in her life. While she was looking forward to having her own place, she described the difference between merely surviving and obtaining peace of mind and validation:

I want to know, do they have programs in the senior citizen building cause when I move there I want to know what I can get involved in. ... I don't like to sit inside, that would be depressing to just be sitting in and looking out the window and don't have nobody to talk to and don't be going no places.

Glenda reported how her family's recognition of her need to be engaged in the community promoted her life satisfaction and eased the transition to community living after her stroke:

My family has been very supportive of me because they know how it is for me to be stuck in the house. They will come get me and take me to the park... Or like my caretaker took me shopping...I have to get out of the house, I just have to be out of the house.

She also adeptly used her homemaker, a person hired to assist with basic survival, to fulfill her need for peace of mind and validation. She was not alone in mobilizing different people to help promote satisfying community participation. From Velma's apparently simple statement, "I go to church on Sunday. My niece has been coming to get me. Cause she knows I like to go." a complex interaction between herself, her niece and her homemaker emerged. This coordinated effort is described in the following field note:

Velma lives in an apartment with five stairs inside the unit leading to the front door. A series of interrelated steps must occur for Velma to go to church: 1) the homemaker must agree to come on Sunday; 2) the homemaker must arrive early to get Velma ready and down the stairs; and 3) the niece has to come by to pick Velma up while the homemaker is there and take her to church.

These two passages indicated the important role that homemakers often assume beyond providing survival support. Without the bridging link served by the homemaker, the women would have remained confined to their home, missing out on opportunities to participate in the community that were meaningful to them. This type of support encompasses a progression from merely escaping the boredom to engagement in a meaningful community. Support at the validation level occurred as informational, instrumental, and emotional support.

Higher levels of reciprocity were embedded in peace of mind, contentment & validation support, as the women were not only cared for as objects, but also were valued as social beings. Reciprocity tended to increase further as support moved from promoting contentment to promoting thriving.

3. Thriving Support

The level of support was used to enable the women to actively engage in a variety of stimulating, meaningful activities that went beyond satisfaction and into the realm of self- development and growth. This type of support was much more dynamic, involving the active participation and coordination of a variety of members of the women's social networks as depicted in the following section in which Rose described how her church community helped to stimulate not only her participation in the community, but also her sense of well-being and self-worth,

My pastor told me when you get ready to come back, just let me know and I'll make sure you gets in. So that's what I did. And the guys were there to help me inside. So now ... I call them an hour before service and they'll come pick me up...It's like one big family. Everybody's concerned. You're happy when you're there... I know I'm a valued person.

Glenda outlined the thriving support she received from multiple sources.

It's just been great...Different people like my family instead of doing something in a group they've been coming one at a time doing things. My granddaughter cooked dinner for me... I like playing monopoly and we played monopoly. It was hilarious. My son he gave me money and that was nice. So the money he gave me I was able to do just frivolous things I wanted to do. Like Thursday I wanted to ride a surrey down the lakefront. So my girlfriend and I got into that and it was hilarious.

The word-choice and the tone with which these stories were told distinguished this level of support from the others. These were expressions of joy and fulfillment that were lacking from both the survival support and the peace of mind/validation support.

Opportunities for thriving were not limited to women who were able to physically engage outside their homes. Many of the women spoke of ways that the community came to them. Betty described how her home became the hub of family gathering:

Well my children come and do chores and stuff. They get my medication and things I need. And we talk. Some of them spend the night. One of them coming over and will spend the night tonight. We sit and cook together and tell jokes and watch TV.

The following excerpt from the field note reinforced Betty's understated description of her home to show what a vibrant community of support it was:

The house bustled with activity. Four nieces and nephews had arrived that morning after driving all night from Florida to visit with Betty. In the three hours that I was there, three of Betty's children stopped by to visit. Several young adult grandchildren and great-grandchildren were also in the home. Additionally a neighbor stopped by for introductions to the extended family and a brief visit. Betty was clearly the center of the household as everyone came to her with questions and conversation.

Embedded in these stories was the fact that the women described themselves not as passive recipients of care, but as active engagers in reciprocal relationships where the strengths of all parties were recognized, respected, and encouraged. As such, this pattern of support was more consistent with the women's life-long experiences and strengths. The data show that the onset of a disability after a stroke did not prevent women from engaging in these reciprocal relationships of support.

While it is in these relationships of support that the women expressed the greatest level of life satisfaction and engagement, the dynamic nature of support was such that it was not always sustained at this level. For example, as described earlier, both Rose and Velma reported being happiest when engaged in their church communities and yet this only represented a few hours out of their weeks and required a great deal of coordination from various members of their social networks. The majority of their time was spent with only survival levels of support highlighting the complex nature of the social support experience.

When the passages on social support were re-examined using multiple need fulfillment as our lens, several important aspects emerged to differentiate between survival, satisfaction and stimulation levels of support, namely which members of the social networks were mobilized and how support was generated. These experiences do not occur in a vacuum but are constrained by barriers imposed by the social environment.

4. Barriers to Need Fulfillment

While social network analysis provides a framework for examining how African American women who had strokes get these multiple levels of needs met, it only provides a piece of the overall picture. The following field note indicates how factors such as inaccessible housing, inadequate medical care, and lack of financial resources create significant barriers to community participation.

Completed interview with Cora Mae after four attempts, previous appointments were re-scheduled due to re-admission to hospital for severe asthma and medical complications. House was identifiable by the half finished ramp out front. The ramp was started 3 months ago by a family friend who had been paid seven hundred dollars. Cora Mae says, "Everything hinges on the ramp" but she fears that the contractor had a relapse to drug addiction and spent all of the money they had given him. As a result, the home remains inaccessible. She spent most of the previous month in the hospital because the agency responsible for her prescriptions misfiled the forms and denied her claim. 'At the time we didn't have the money to buy it, it was fifty-nine dollars ... and so I ended up back in the hospital for 2 weeks. I was sick I mean I was really sick.'

Cora Mae's experiences highlight how economic, social and environmental barriers oppress older adults with disabilities, limiting their choices and their control, even threatening their very survival. Any understanding of need fulfillment must incorporate the impact that these barriers have on individual experiences of support.

V. DISCUSSION

The results indicate that the usual categories of social support that include: 1) instrumental, 2) emotional, and 3) informational support were inadequate to capture disabled women's complex and nuanced experiences. Although the women were receiving all of the identified types of support, many of their personal needs were not met. There is a tendency by members of the social network to focus a great deal of their social support efforts on the women's needs for basic survival, often at the exclusion of higher level needs (Roe et al., 2001; Chapin, 2001). Given the high value that contemporary Western culture places on the pursuit of the American dream of life, liberty and the pursuit of happiness, this narrow focus and low expectations for disabled women is striking (Morris, 1991; Thomas, 1999). There is a need to reframe how support is conceptualized, provided, and recognized, to create opportunities for the fulfillment of disabled women's multiple needs and desires.

Although the study findings highlight the importance of opportunities for peace of mind, contentment, validation and thriving, these areas tend to be overlooked in both research and the lived experiences of women with disabilities. The participants spoke of how family and health professionals tended to emphasize basic survival and safety issues to the exclusion of desired participation in a variety of meaningful occupations.

While survival support is certainly an essential factor that enables disabled women to live and participate in their homes and communities, the over-emphasis on survival support creates a slippery slope as network members' expressions of concern move from "caring about" to "taking care of" to "taking control of" (Morris, 1993). This can result in imposed dependency and loss of control that may actually serve as a barrier to seeking needed assistance (Gignac & Cott, 1998; Walters et al., 2001). Walters et al. (2001) reported that the reluctance to ask for help was related to disabled people's low-expectations of the availability of support and their eventual decision to withdraw from desired life roles and activities. This explanation, however, places the blame for inadequate support on the women themselves. If we re-examine this situation with a social constructionist lens, a different explanation can be realized. Reluctance to seek help may stem from the women's internalization of the devalued status of people with disabilities. The fears of being a burden are strongly felt by this group of women who feel that they can no longer be of service to others since their strokes (Dyeson, 2000). This negative construction is tacitly reinforced when family and friends fail to provide support at the level needed or wanted by disabled women.

Significantly, the experience of support was not limited to receiving support but also the continued importance of supporting others. These women emphasized that developing and sustaining reciprocal relationships for mutual benefit was an important part of their existence. From the women's stories it became clear that the dichotomy of caregiver/care-receiver was inadequate to understand the women's experiences within their social networks. Support was better understood as fluid and multidirectional, involving different people at different times to meet a variety of life needs.

The study's findings point to the need for an alternate model (Figure 1) that addresses the perceived inadequacies of existing categories of social support. This model acknowledges that both strengths (personal resources) and social networks (social resources) influence disabled women's ability to meet multiple levels of needs; while also attending to the influence of contextual factors such as social, economic, and environmental barriers. This model represents the dynamic and interactive nature of all these components as no one component can be examined in isolation. Rather, the interactions and feedback loops between elements must be attended to and recognized.

Unlike most explanatory models of social support, the focus of this model is not on the type of support provided but on how support is used and experienced by disabled women. The model focuses on the processes and meanings of social support rather than simply on its provision.

This model strives to reflect the dynamic nature of social networks. Everyone who participates in it influences the overall experiences. The multidirectional flow of support and resources between women and their social worlds and the meanings that these hold for different members of the social network is also being attended to (Trotter, 2000).

The model also recognizes that women do not live in a socio-cultural vacuum but they are subjected to a wide variety of external pressures barriers. There are times when no matter how strong or resourceful the individual; these socially imposed barriers can overwhelm the entire social support experience. Gaps in the social welfare system force disabled women to rely on a patchwork support from informal social networks. Hattie, Velma, and Cora Mae's stories all provide examples of how poverty, limited access to health care, inadequate funding of social programs, a lack of coordinated service, and negative understandings of help seeking behaviors further limit their opportunities for need fulfillment. Therefore, while the African American traditions of communalism, interdependence, and commitment to family may help to keep the women surviving in the community, coordinated efforts from policy makers and social planners are needed to ensure that other needs to not go unnoticed.

VI. LIMITATIONS

This study developed an alternative model for understanding the social support experiences from the perspective of disabled women based on a small fairly homogenous sample of African American women who had recently had strokes. To verify the validity of the model, the findings must be explored with a larger more diverse population. Input should be sought from the disability community itself to determine if the findings are representative of their experiences. Additionally, the findings are based on cross-sectional data generated from the single interviews. Future studies should explore the process of social network mobilization for multiple need fulfillment over an extended period of time to more fully understand how these relationships evolve over time. Although perceived social support has been shown to have a greater impact on quality of life outcomes than received support, the current study only examined social support from the participants' verbal reports. A richer understanding of social support complexity would be achieved by obtaining data from multiple sources including significant others and direct observations of how issues discussed during the interviews play out in real-life situations. Future studies will continue to elaborate this model of social support by delving into the issues in-depth with a diverse population of disabled people across a range of life transitions.

VII. CONCLUSION

Over the course of their lives this group of women has developed many strengths, particularly related to their connections others. These strengths are embedded in their social networks. Networks that can be used and mobilized to promote meaningful community living that extend beyond merely surviving to thriving.

For this group of women, many of whom are experiencing functional limitations for the first time, new challenges are being imposed to their abilities to engage in what used to be spontaneous participation in volunteering, community building and important activities of meaning-making. Active engagement and the opportunity to thrive require mobilizing bridging relationships within and beyond their immediate networks. This may involve coordinating existing members of the social network or reaching out to entirely new communities. For this group of women, it is vitally important that the bridge is two-way, not only should the women be invited to reach out to the members of their social networks but others should reach out to them with opportunities for engagement. The concept of reciprocity is closely tied to thriving, to continue to have one's contributions acknowledged after their strokes. Adopting a strengths-based and social model of disability-based approach to the study of social support, social networks and community participation allows the researcher and the practitioner to move from trying to fix the women to examining what can be done to change the social world and systems to nurture and facilitate social networks. This study represents the first step in a line of inquiry that will explore how social networks and communities can be more responsive to the needs of disabled women so that they can do more than survive in our culture, but can also thrive and continue to enrich it.

FOOTNOTES:

1. This research was sponsored in part by the National Institute on Aging, Grant # 1RO3AG17692-01.
2. This study was completed in partial fulfillment of the requirement for a Master of Science in Occupational Therapy Degree at the University of Illinois at Chicago.

Non-visual written description of Figure 1

This model conceptualizes social support as serving to meet three primary needs: 1) the need for basic survival (food, shelter, medication, etc.); 2) the need to feel valued as a person with a sense of peace of mind and contentment; and 3) the need to thrive or pursue opportunity. Support is classified by how it is used and experienced by the individual. These needs are not hierarchical but rather exist in a dynamic interdependent system where each can take precedence depending on socio-environmental and personal influences, both positive and negative. Positive influences include: supportive social networks and individual, group, and community strengths. Environmental (e.g. inaccessible housing, lack of transportation), economic (e.g. poverty, housing costs), and sociopolitical (e.g. racism, ableism, sexism, social isolation, internalized oppression) barriers interfere with the individual's access to and experience of support.

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