What do we know about happiness and well-being and how to best promote these positive states around the globe? Not enough, but more than we did even a decade ago. Breaking tradition with the usual focus on what is wrong with people, the growing field of positive psychology instead asks what contributes to people doing well and being happy, above and beyond the amelioration of psychological suffering. Positive psychology aims to more fully understand such positive states as hope, gratitude, satisfaction, flow, engagement, virtues, purpose, and meaning (Csikszentmihalyi, 1990; Seligman, 2002; Snyder & Lopez, 2002). Although positive psychology is still a field under construction, it provides a scaffolding to begin building a positive psychology for persons with mental retardation (Dykens, in press).
We know precious little about the positive internal states of those with mental retardation. Dykens (in press) recently described strategies for conceptualizing and measuring the happiness, well-being, and sense of meaning and purpose in persons with mental retardation as well as in their families and careproviders. In this article, I focus on the need to broaden the scope of traditional family research to include a host of positive outcomes for families and siblings of persons with mental retardation.
Negative Outcomes and Stress-and-Coping Models in Family and Sibling Research
Researchers examining the families of children with mental retardation have long assumed a psychopathological orientation. A landmark paper by Solnit and Stark (1961) promoted the idea that mothers of children with disabilities inevitably mourned the loss of their idealized perfect infant. Such thinking gave way to stage theorists, who assumed that mothers went through stages involving shock, emotional disorganization, and emotional reorganization as they adjusted to the trauma of having a child with disabilities (see Blacher, 1984, for a review). Still others felt that mothers harbored chronic sorrow about their child that was rekindled at key transition points in their child's development (Olshansky, 1962). Fathers, who were rarely studied, were cast as withdrawn and turning away from the family (see Minnes, 1998). Sibling researchers also adopted a psychopathology model, assuming that siblings had to be maladjusted, slighted, and harmed by having a brother or sister with disabilities (see Stoneman, 1998, for a review).
Authors of more recent views have moved from the assumption that families are stressed and psychopathological to the idea that they are stressed and coping as best they can (Hodapp, 2002). The child with mental retardation is cast as a stressor, as one of many life stressors that require a coping response from family members. The child, thus, calls upon the coping mechanisms of family members, who may manage in ways that are both adaptive and maladaptive. A stress-and-coping model opens up the possibility that some families of children with mental retardation actually manage very well. Mothers with problem-focused coping styles, for example, generally fare better than those with emotional coping styles (Won, Greenberg, Seltzer, & Krauss, 2003.) Further, some families with a member who has Down syndrome, including families who have adopted babies with this syndrome, fare better than other families with or without disabilities (Glidden, 2000; Hodapp, Ly, Fidler, & Ricci, 2001). In this line of work, then, researchers assume that families of children with disabilities are inherently stressed and assess the extent to which they are “hanging in” and coping with the stressor.
Positive Outcomes: Beyond Negative and Stress-and-Coping Models
Although a stress and coping model is a better fit for family research than psychopathology, many families and siblings report various positive effects of having a family member with mental retardation. These families are not just coping, they are thriving and positively benefiting from having a member with a disability—they are better people because of the experience. Some families, for example, note positive transformations for themselves and the family, with renewed abilities to adapt to a changing world. Other families view life as more valuable: Having a child with mental retardation is not necessarily easy, but it leads to a fuller and richer life (Knox, Parmenter, Atkinson, & Yazbeck, 2000; Scorgie & Sobsey, 2000). Among siblings, a variety of positive outcomes have been noted (Orsmond & Seltzer, 2000). One sibling thanked his brother with Down syndrome for “teaching me the most important things in life” (patience and tolerance), whereas others have noted that having a sibling with disabilities leads them to have increased empathy, love, sense of social justice, advocacy for those in need, protection–nurturance, loyalty, implicit understandings and acceptance of difference, and what one sibling called his “common humanity” with others (McMillan, 2005; Swenson, 2005).
Two Positive Frameworks
We can plug the words and ideas expressed by these families and siblings into two larger conceptual frameworks of positive outcome. One such framework is psychological well-being, as operationalized and studied over the years by Ryff (1989), Deiner, Oishi, and Lucas (2003), and others. In studying well-being, these researchers distinguish between Aristotle's concept of eudaimonia (the realization of one's true potential) versus hedonic well-being (experiences of pleasure and bodily and life satisfactions).
Ryff (1989) developed a scale of eudaimonic well-being that has proven conceptually and psychometrically robust over the years. There are six domains:
Self-Acceptance: positive attitude toward the self; acknowledges and accepts multiple aspects of self, including good and bad qualities
Positive Relations With Others: warm, satisfying, trusting relationships; concerned about others' welfare; capable of strong empathy, affection, intimacy
Autonomy: self-determining and independent; able to resist social pressures; regulates behavior from within; evaluates self by personal standards
Environmental Mastery: sense of mastery and competence in managing environment; controls complex array of external activities
Purpose in Life: has goals in life and sense of directedness, feels there is meaning to past and present, has beliefs that give life meaning, has aims and objectives
Personal Growth: has a feeling of continued development; sees self as growing and expanding; open to new experiences; has sense of realizing one's potential
All these domains in the 84-item scale reflect an objective sense of psychological well-being. Subjective well-being, on the other hand, reflects people's emotional reactions and judgments about their lives and is comprised of questions that assess life satisfaction, including satisfaction with specific domains (e.g., work), the presence of positive affect (e.g., joy or happiness), and the absence of negative affect (Deiner et al., 2003).
Subjective or psychological well-being is moderated by such factors as genetics, brain functioning, marital status, religiosity, personality, work, economics, and health. It is also not yet clear how much of the variance in well-being is accounted for by having a family member with disabilities. The positive outcomes that siblings offered, as noted above, seem to reflect domains of psychological as opposed to subjective well-being, especially well-being as it relates to Ryff's (1989) domains of Purpose, Personal Growth, and Positive Relations With Others. Indeed, Seltzer, Greenberg, Floyd, and Hong (2004) have demonstrated that different domains of psychological well-being are associated with specific maternal coping styles as well as with offspring maladaptive behavior and diagnoses (e.g., autism, mental retardation, Down syndrome, mental illness). Mothers of children with either developmental disabilities or severe mental illness, for example, had higher levels of environmental mastery and self-acceptance if they predominantly used an accommodative coping style. Similarly, mothers who perceived their child as a source of fulfillment and as a way of promoting familial strength and closeness were more apt to use reframing coping strategies (Hastings, Allen, McDermott, & Still, 2002). Although these studies have linked certain maternal coping styles to domains of well-being, other maternal factors, such as age or personality, also likely play a role in these positive outcomes.
A second way to frame and measure positive family and sibling outcomes stems from the work of Seligman (2002), Peterson and Seligman (2004), Csikszentmihalyi (1990), and others at the forefront of the positive psychology movement. Distinguishing between eudaimonic and hedonic well-being, Seligman outlined three roads to happiness. One path is comprised of positive emotions, including emotions about the past, contentment; emotions about the present, such as savoring sensory pleasures; and emotions about the future, such as optimism and hope. A second, more enduring path to happiness is being involved in activities, work, and relationships that bring about engagement, flow, and meaning. The third path is serving something larger than oneself, or finding purpose and meaning in serving one's larger community or society.
To optimize flow, meaning, and purpose, Peterson and Seligman (2004) proposed that people need to cultivate work, social relationships, and activities that best tap their core virtues and strengths. They describe 6 core virtues and 24 strengths that are culled from world history, religions, cultures, and philosophies as follows. Each virtue is followed by strengths.
Wisdom and Knowledge: curiosity (interest, novelty-seeking, openness to experience), love of learning (mastering new skills, or topics), judgment (open-mindedness, critical thinking), ingenuity (authenticity, honesty), social intelligence (emotional intelligence, personal intelligence), perspective (wisdom)
Courage: bravery (valor), persistence (perseverance, industriousness), integrity (authenticity, honesty)
Humanity: kindness (generosity, nurturance, care, compassion), loving (valuing close relations with others, reciprocal sharing and caring)
Justice: citizenship (social responsibility, loyalty, teamwork), fairness (equal treatment of others based on notions of fairness and justices), leadership (organizing group activities and seeing that they get done)
Temperance: self-regulation (self-control, being disciplined), prudence (not taking undo risks, not saying or doing things that might later be regretted), humility (modesty, letting one's accomplishments speak for themselves)
Transcendence: appreciation of beauty and excellence (awe, wonder, elevation), gratitude (being aware of and thankful for the good things that happen), hope (optimism, future-mindedness), spirituality (religiousness, faith, purpose), forgiveness (giving people a second chance, not being vengeful), humor (playfulness, liking to laugh and tease, seeing the light side), zest (vitality, enthusiasm, vigor, energy)
Relations between domains of psychological well-being and specific character strengths have yet to be rigorously studied, although certain strengths seem more closely tied to subjective well-being (Park, Peterson, & Seligman, 2004).
Although studies are needed, anecdotal data implicate some core strengths and virtues as possible positive outcomes for families and siblings. Of the 24 strengths listed above, parents and siblings have most often noted experiencing increased humanity (kindness, loving, being loved), justice (fairness), wisdom (judgment, perspective, social intelligence), and transcendence (forgiveness, humor, gratitude). Studies are now needed that include these domains as possible outcomes for families and siblings; work is also needed on the role of positive emotions (e.g., hope, contentment) in families with members who have disabilities.
Caveats and Next Steps
As research on the families and siblings of brothers and sisters with special needs moves forward, several caveats are in order. First, enhanced well-being and core strengths are only one set of possible family and sibling outcomes. Examining positive outcomes does not replace the need to also examine stressful or negative responses. Parents may also feel upset and distressed, and siblings may feel stressed, resentful, embarrassed, hurt, jealous, anxious, or burdened because of their brother or sister with disabilities. Indeed, both perspectives are needed to assess the full range of possible family and sibling outcome.
A second, related caveat is that parents and siblings may experience both positive and negative responses simultaneously, switching back and forth in their responses over the course of time. One can easily imagine cases in which a sibling uses her relationship with a brother or sister with disabilities to cultivate strengths in the areas of humanity, kindness, love, and social justice. Such strengths may not necessarily protect this same sibling from also having negative feelings, perhaps being angry at their sibling or embarrassed by his or her appearance or behavior. Such positive and negative reactions are fully expected and fall within the realm of healthy emotional experiences. Balanced approaches are needed in which researchers assess the full range—from positive to negative and in between—of family and sibling responses.
Further, although positive and negative effects or outcomes may co-occur within any one sibling at a given point in time, they also vary and change over the course of time. A developmental orientation is certainly not new to family or sibling researchers. What is newer to the research scene, however, is the idea that families and siblings develop a host of positive outcomes as a direct consequence of having a family member with mental retardation and that positive is not measured by having less stress or maladjustment. Instead, it is measured by having enhanced well-being; positive affects; and specific, clearly defined virtues and character strengths.
As next steps, then, researchers might ask to what extent families and siblings are (a) harmed by having a member with mental retardation, (b) coping and getting by, and (c) thriving and uniquely benefiting from the richness provided. What is it about the sibling that is associated with these outcomes, especially the positive ones? Are some adult siblings more “primed” than others for positive outcomes due to their genetic predispositions, personality, coping styles, gender, age, place in the family, and life circumstances? What factors in the brother or sister with mental retardation help spark and sustain a cascade of more positive versus negative effects for parents and/or siblings? Do positive outcomes in family members vary across different etiologies of mental retardation? Are they related to the affected individuals' IQ, level of impairment, maladaptive behaviors, personality, gender, or age? Finally, what is it about the relationship among parents, siblings, and family members with mental retardation that engenders more positive outcomes?
Family research in mental retardation is teetering on the edge of many things positive. Previously, when researchers were seeped in the pathological model, they focused on, and sometimes found, negative family and sibling outcomes. With the emphasis on a stress and coping model, researchers are now identifying specific economic, psychological, and health stressors associated with having a child with disabilities, and the various coping styles that mothers in particular use to successfully deal with these stressors. Throughout all of this work, however, mothers, fathers, grandparents, and siblings have also been telling researchers stories about how their family member with disabilities brings them a unique source of joy, richness, and meaning; as many families say, “We are blessed.” With advances in the science of well-being and positive psychology, researchers now have a language and framework to understand these positive tales, to learn from families how and why they are so blessed.
Author: Elisabeth M. Dykens, PhD, Professor, Psychology and Human Development, Associate Director, Vanderbilt University Kennedy Center for Research on Human Development, 230 Appleton Place, Peabody Box 40, Nashville, TN 37203-5701. email@example.com