Chapter 36
Psychological and Relational Resources in the Experience of Disability and Caregiving

ANTONELLA DELLE FAVE ANDREA FIANCO AND RAFFAELA D. G. SARTORI

Authors' Note. We are grateful to IRCCS Fondazione Don Carlo Gnocchi, Fondazione Telecom Italia, and the Italian Ministries of Health and of Education for the financial support to this work.

Pharmacological and technological advancements in the medical field and growing resource investment in social services have substantially increased life expectancy in most countries. However, one of the consequences of these changes is the so-called epidemiological paradox: The number of years that people spend living with chronic diseases and mental disorders dramatically increased as well (Keyes, 2007).

The implications for researchers and practitioners in the health domain are manifold. In particular, there is growing empirical evidence of the fact that physical health and daily life functioning are different concepts, and that subjective outlooks, beliefs, and evaluations substantially influence individual health and quality of life. The necessity of guaranteeing an adequate quality of life to people with permanent disabilities and chronic diseases and their families has become a priority for governments and institutions. At the same time, intervention programs have to take into account the subjective dimensions of well-being and health.

This chapter aims at illustrating some of the main theoretical and empirical contributions to the study and promotion of well-being among people with disabilities and their caregivers, within the bio-psycho-social perspective endorsed by the World Health Organization. The psychological and interpersonal resources that allow individuals and families to successfully cope with health challenges will be briefly outlined, and empirical evidence derived from qualitative studies will be provided.

These issues were already addressed in a chapter included in the previous edition of this book (Delle Fave & Massimini, 2004). However, it explicitly focused on the investigation of the individual resources perceived by people with sensorial and motor disabilities, which were analyzed within the specific conceptual framework of optimal experience and psychological selection. The present chapter aims at broadening and updating this perspective. It provides an overview of the most recent theoretical approaches and empirical works investigating the resources that people with chronic diseases, as well as their caregivers, identify in daily life. Two of these approaches—optimal experience and resilience—will be specifically explored through the illustration of findings derived from both people with chronic diseases and caregivers. Moreover, attention will be paid not only to the individual resources, but also to the assets and facilitators perceived within the family and the social context.

Theoretical Framework

In the past few decades the complex relationship between disease, well-being, and quality of life has obtained increasing attention within the biomedical and social domains. In particular, there is growing consensus among researchers and practitioners about considering quality of life as a subjective concept, involving perceived opportunities for action and skill development in the daily environment, social relations, values, personality features, and the pursuit of goals that are not necessarily dependent on physical functioning (Fitzpatrick, 2000; Skevington & McCrate, 2011; Veenhoven, 2002). Objective indicators, and in particular physical health conditions, only partially influence this evaluation.

A Shift in Focus: From Disease to Person, from Deficits to Resources

The investigation of subjective indicators of quality of life shed light on the only apparently paradoxical evidence of the positive consequences of illness (Sodergren & Hyland, 2000). Disease can be experienced as a problem, but also as a challenge and an opportunity for action and personal growth. In line with the definition of health and functioning provided by the World Health Organization (WHO, 1946) and the bio-psycho-social model (Engel, 1977), several studies were conducted with the aim of identifying and quantifying subjective indicators of well-being. In particular, the emergence of the field of positive psychology shed light on the importance of detecting and implementing individuals' functions and abilities, instead of focusing on deficits and limitations only.

This shift from a biomedical and problem-focused view of disease to a bio-psycho-social and resource-based approach is reflected in the International Classification of Functioning, Disability and Health (ICF; WHO, 2001, 2007). ICF is the official system of classification developed by WHO in order to observe and evaluate the level of functioning, health, and quality of life of human beings. By virtue of its comprehensive structure, it can be used to assess the bio-psycho-social functioning of any individual, including persons with diseases and disabilities of different severity. In the ICF, each dimension of functioning is conceptualized as a dynamic interaction between individual features and the social and physical environment. This classification takes into account three major aspects of individual functioning: body functions, activities, and participation. It also aims at evaluating the role of contextual barriers and facilitators, represented by personal and environmental features that can promote or hinder functioning. The interaction between all these components contributes to define the overall health condition of the individual. This multidimensional approach calls for a closer collaboration and integration of knowledge among helping professionals, based on the assumption that biological, psychological, social, educational, and cultural aspects play a specific role in the promotion of the person's functioning. From this perspective, interventions to promote health and well-being—especially in suboptimal health conditions—cannot be confined to medical treatments, but should comprise the removal or reduction of barriers and the promotion of facilitators at multiple levels. Furthermore, by virtue of its assessment of the positive components of functioning, ICF represents an opportunity for health professionals to pay attention not merely to problems, deficits, and barriers, but also to personal and environmental resources that may enhance the individuals' level of bio-psycho-social health and functioning, as well as their social inclusion and participation.

Several factors influence the outcomes of disease and disablement. As suggested in the ICF model, both environmental and personal features can mediate the impact of health conditions on the quality of life (Dixon, Johnston, Rowley, & Pollard, 2008; Schopp et al., 2007; Seekins, Traci, Cummings, Oreskovich, & Reveslot, 2008). At the environmental level, attitudes and behavior of caregivers and family members play a primary role, together with interpersonal, educational, and organizational facilitators and barriers (Bodde & Seo, 2009). At the personal level, studies have highlighted the mediating function of psychological resources and coping style (Bauer, Koepke, Sterzinger, & Spiessl, 2012).

Psychological and Relational Resources

Any intervention program in the health domain should aim at promoting the best attainable physical, psychological, and social well-being. As concerns the psychological realm, the identification of positive experiences under stressful circumstances can represent a good starting point to transform negative emotions and to support development and psychological adjustment (Folkman & Moskowitz, 2000). The theoretical and empirical contributions provided by positive psychology offer a useful perspective to identify individual psychological resources and to contextualize them in broader conceptualizations of well-being, such as Keyes' (2002, 2007) model of mental health as a continuum between the two poles of flourishing and languishing, and the articulation of well-being into hedonic and eudaimonic dimensions (Ryan & Deci, 2001).

This section will provide a brief overview of the main psychological resources that have been identified and investigated among people with chronic diseases or disabilities and their caregivers. In particular, from the ICF perspective family and caregivers represent important environmental resources and facilitators for persons with disabilities and chronic disease. For this reason, caregivers' psychological resources and quality of life must be explored and supported in intervention programs. However, little information is available on this topic, due to the prominent emphasis of researchers on caregiver burden, defined as a multidimensional response to the negative appraisal and perceived stress resulting from taking care of an ill person. Caregivers frequently suffer from depression, exhibit maladaptive coping strategies, report more physical and psychological symptoms, and use more frequently medications and health-care services than comparable non-caregivers (Molyneux, McCarthy, McEniff, Cryan, & Conroy, 2008; Serrano-Aguilar, Lopez-Bastida, & Yanes-Lopez, 2006). Some studies suggest that moderate to severe disability is related to high caregiver burden (Conde-Sala, Garre-Olmo, Turro-Garriga, Vilalta-Franch, & Lopez-Pousa, 2010; Rinaldi et al., 2005). However, a positive perspective may shed light on how caregivers can successfully cope with daily care activities and on which resources they can rely (Sussman & Regehr, 2009). Positive psychology offers many constructs that can allow researchers and practitioners to consider the caregiving role from a constructive perspective, highlighting protective factors through which caregivers' well-being can be supported and enhanced. A recent and unique contribution in this domain is represented by the development of the Adult Carers Quality of Life Questionnaire (AC-QoL; Joseph, Becker, Elwick, & Silburn, 2012), which quantifies both the negative and the positive aspects of caregiving. The latter comprise individual as well as contextual dimensions, such as environmental mastery, personal growth, sense of value, satisfaction, social support, and financial resources.

Self-Efficacy

Self-efficacy is defined as the level of competence individuals perceive in facing a specific situation (Bandura, 2004). It is based on individuals' perceived level of competence in pursuing and achieving goals in specific life domains, as well as on the perception of internal locus of control. Individuals with high self-efficacy beliefs actively face negative events, since they perceive themselves as directly responsible for these events' outcomes. For example, studies conducted among people with cardiovascular diseases showed that high self-efficacy predicted high adherence to rehabilitation treatment, functional recovery, low anxiety and depression, and low probability of being readmitted to the hospital (Arnold, Ranchor, Koëter, De Jongste, & Sanderman, 2005; Sarkar, Ali, & Whooley, 2009). Rutterford and Wood (2006) found that self-efficacy contributed to the perception of a good quality of life 10 years after brain injury.

As for caregivers, self-efficacy positively influences performance, feeling of accomplishment, and search for challenging and novel experiences. Self-efficacious caregivers of people with physical and mental disabilities more often identified positive aspects in caregiving, and managed negative emotions more effectively (Carbonneau, Caron, & Desrosiers, 2010; Semiatin & Connor, 2012). Sharing enriching events and experiences with their ill relatives reduced the negative aspects and reinforced the positive aspects of caring (Hellstrom, Nolan, & Lundh, 2007; Hwang, Rivas, Fremming, Rivas, & Crane, 2009).

Positive Emotions

Emotions remarkably influence selection, memorization, and cognitive evaluation of the information, driving the perception of risk, control, perceived well-being, and expectancies on the success or failure in daily situations. Positive emotions facilitate adequate risk perception (Isen & Geva, 1987), mobilize cognitive and motivational resources (Aspinwall & Brunhart, 1996), and promote adaptive coping strategies (Lazarus & Folkman, 1984) and prosocial behaviors (Isen, 1987). Fredrickson (2001) synthesized the role of positive emotions in promoting well-being and development in the broaden-and-build theory: In problem-solving situations, positive emotions expand the cognitive and behavior repertoire available to the individual (broadening). This cognitive broadening fosters the development of stable resources in the long run (building). An extensive study conducted among women with moderate to severe disabilities showed that emotional vitality—defined as a condition of high sense of personal mastery, happiness, and low depressive symptoms and anxiety—was associated with a significant decrease of the risk of incidents in performing daily activities, and with a lower risk of mortality (Pennix et al., 2001).

The influence of positive and negative emotions on caregivers' well-being was also investigated (Robertson, Zarit, Duncan, Rovine, & Femia, 2007). Four possible emotion patterns were identified: high positive and low negative affect (well-adjusted), low positive and negative affect (ambiguous), high positive and negative affect (intense), high negative and low positive affect (distressed). Well-adjusted caregivers showed the highest levels of physical health, compared with participants characterized by other emotional patterns. They also reported higher sense of competence and fewer behavior problems, showing the ability to access positive emotions and use them to adaptively cope with stressful experiences.

Sense of Coherence

Sense of coherence (SOC) represents a general orientation toward reality, based on the assumption that life events and situations—including the negative ones—are ultimately meaningful, comprehensible and manageable. People reporting high levels of SOC are able to find and bring order and organization in apparently ambiguous and disruptive situations (Antonovsky, 1987; see also Sagy, Eriksson, & Braun-Lewensohn, Chapter 5, this volume). Among people with disabilities, SOC was found to be strongly associated with life satisfaction (Jacobson, Westerberg, Malec, & Lexell, 2011). As for caregivers, the relation between SOC, depressive symptoms and burnout were investigated. Positive correlations were detected between high levels of stress, poor health, low SOC, and higher risk of burn-out (Oelofsen & Richardson, 2006). Research also linked caregivers' SOC with physical and psychological well-being and the use of adaptive coping strategies (Ekwall, Sivberg, & Hallberg, 2007).

Posttraumatic Growth

Ill people frequently report improvements in interpersonal relationships, positive personality changes, life reappraisal, and restructuring (Sodergren & Hyland, 2000). Identifying positive consequences in disease influences health and well-being in the long term through two major processes: benefit finding (King & Miner, 2000; Tennen & Affleck, 2002) and posttraumatic growth (Joseph & Linley, 2005; Tedeschi & Calhoun, 1996). Studies conducted among people with cancer (Morris & Shakespeare-Finch, 2011; Scrignaro, Barni, & Magrin, 2009), spinal cord injuries (Pollard & Kennedy, 2007), and traumatic brain injuries (Powell, Ekin-Wood, & Collin, 2012) emphasized the positive relation between posttraumatic growth and a sense of personal meaning, life satisfaction, and social support.

Analogously, among caregivers positive relations were detected between posttraumatic growth and humor, support and spirituality (Cadell, 2007). Posttraumatic growth was positively related with life satisfaction, social support, emotional processing strategies, and problem-focused coping strategies (Mosher, Danoff-Burg, & Brunker, 2006).

Optimal Experience

Several studies showed that the quality of subjective experience undergoes changes in relation to the levels of perceived environmental challenges and personal skills (Massimini & Delle Fave, 2000). These changes correspond to well-defined experiential states among which a peculiarly structured and positive condition was identified: optimal experience or flow (Csikszentmihalyi, 1975/2000; Delle Fave, Massimini, & Bassi, 2011). Flow is characterized by high concentration, involvement, control of the situation, and clear goals. Its core feature is the perception of high environmental challenges balanced with adequate personal skills. The activities associated with optimal experience tend to be selectively replicated and cultivated in the long run, promoting the refinement of related skills and competences and shaping the lifelong process of individual psychological selection (Csikszentmihalyi & Massimini, 1985).

Optimal experience in daily life was constantly identified among people with congenital and acquired disabilities such as blindness, spinal cord injuries, dwarfism, and psychosis (Bassi, Ferrario, Ba, Delle Fave, & Viganò, 2012; Cortinovis, Luraschi, Intini, Sessa, & Delle Fave, 2011; Delle Fave, 2010; Delle Fave & Massimini, 2004, 2005a, 2005b). Physical conditions however influenced the kind of activities individuals engaged in: For example, blind people primarily reported media-related activities and manual tasks. However, overall participants associated optimal experience with complex and demanding activities in the domains of work and leisure, and to a smaller extent family relations. Moreover, even though acquired disabilities often prevented individuals from practicing activities previously associated with optimal experience, most participants succeeded in identifying new opportunities for optimal experience, showing the ability to flexibly adapt to the new condition, and to pursue developmental goals in spite of biological limitations.

Resilience

Resilience is the ability to withstand and rebound from disruptive life challenges. It involves dynamic processes fostering positive adaptation within the context of significant adversity (Bonanno, 2004; Luthar, 2006), allowing the individual to mobilize psychological and social resources along a positive growth pathway.

While earlier studies focused on the individual aspects of resilience, researchers presently consider resilience as the outcome of the dynamic interplay of multiple risk factors and protective processes over time that can be identified within the individual, as well as at the interpersonal, social, and cultural levels (Garmezy & Masten, 1991; Rutter, 1987; Zautra, Stuart Hall, & Murray, 2012). Biological, psychological, and social resources are therefore involved in the resilience process. Particularly interesting to the purpose of this chapter is the contribution of Froma Walsh (2003, 2006, 2011), who formalized the concept of family resilience, considering family as a functional unit. From such a systemic perspective, resilience is one of the key processes that mediate the adaptation of all family members and their relationships (Mackay, 2003; Patterson, 2002; Simon, Murphy, & Smith, 2008). Inverting the deficit-based perspective, life adversities can become potential opportunities for redefining the meaning and quality of relationships within the family. Furthermore, since the family is not isolated from the context, environmental resources and risk factors at the community and culture levels interact with the family resilience pattern in influencing the final outcome of a problematic condition. The systemic conceptualization of resilience was also successfully adopted in studies investigating caregivers' resource mobilization and management strategies (Gerstein, Crnic, Blacher, & Baker, 2009).

In Their Own Voice: Challenges and Resources of Caretakers and Caregivers

In order to more directly investigate challenges and resources perceived by people with disabilities and their caregivers, in the following pages we will illustrate qualitative findings derived from two different studies. The first one was conducted among people with hereditary spastic paraparesis (HSP) and their caregivers. The second study involved parents of children with intellectual disabilities.

Living With HSP: Daily Experiences and Future Expectations

HSP is a rare genetic neurodegenerative disease that includes a variety of clinically similar disorders. The clinical classification distinguishes between pure and complicated forms. The former are characterized by progressive weakness and increased muscle tone in the lower limbs (Fink, 2003; Fink, Heiman-Patterson, & Bird, 1996), while the latter include additional neurological impairments such as distal muscle wasting, peripheral neuropathy, and mental retardation.

Our research group recently conducted a study among Italian people with HSP and their caregivers in order to identify the activities and situations participants associated with optimal experiences, their perceived challenges in daily life, as well as their future goals.

Sample, Instruments, and Procedure

Participants with HSP were 22 women and 32 men, aged 46 on average, and diagnosed with a pure disease form (50%) or a complicated one (14.8%). For the remaining 35.2% a clinical diagnosis of HSP was available, while its genetic substratum had not been identified yet. This is not surprising, due to the still limited knowledge on this rare condition. Only 11.1% of the participants could walk autonomously, while 35.2% reported an altered gait, 20.4% needed crutches, and 33.3% needed a wheelchair. A mild cognitive impairment was documented in 20.4% of the interviewees. Most participants (68.5%) were entitled to a disability retirement pension, while 31.5% worked, prominently as office employees. In this group, 50% of the participants were married, 38.9% were single, and 11.1% were separated or divorced.

We also got the collaboration of 31 caregivers, 24 women and 7 men, aged 51 on average. The majority (56.7%) were spouses of the participants with HSP, 36.7% were parents, and the two remaining cases comprised a daughter and a sibling. In this group, 51.6% of the interviewees worked, prominently as employees, while 48.4% were retired or housewives.

Data were collected by two researchers through Flow Questionnaire (FQ) and Life Theme (LT) Questionnaire (Delle Fave & Massimini, 2004). The vast majority of the participants requested the researcher's presence to fill out the questionnaires. In FQ, participants were invited to read three descriptions of optimal experience, derived from interviews with lay people reporting this state of consciousness in association with various daily activities (Csikszentmihayi, 1975/2000; Delle Fave & Massimini, 2004). Participants were then asked to indicate whether they had ever felt optimal experience in their life. In case they did, they were invited to list the associated activities or situations (optimal activities). LT allowed for exploring, by means of open-ended questions, participants' life history and developmental trajectories. Among other aspects, the prominent challenges that participants perceived in the present life, and the most relevant goals they aimed at pursuing in the future, were investigated.

For the purposes of this chapter, we provide information on the optimal activities reported by the participants, their perceived challenges, and future goals. Based on the open structure of the questions, no limitations were set to the number of answers (optimal activities, challenges, and goals) that participants could provide. After data collection, answers were assigned numeric codes, and they were grouped into broad functional categories, reflecting the main daily life domains (such as productive activities, leisure, social relations, and personal care); category percentages were subsequently calculated for the two groups of participants. In order to perform between-group comparisons, the number of participants who provided at least one answer in each category was computed. Fisher's exact test was run on these frequencies to check for group differences.

Optimal activities. The majority of people with HSP (76%) and of their caregivers (81%) reported optimal experiences in their daily lives. Table 36.1 shows the percentage distribution of optimal activities in the two groups.

Table 36.1 Percentage Distribution of the Optimal Activities Reported by People With HSP and Caregivers

Optimal Activities People With HSP (Na = 41) Caregivers (Na = 25)
Productive activities 30 35
Volunteering 4.3 2.5
Social relations 2.9 2.5
Leisure 51.3 30
Family interactions 5.7 27.5
Health/personal care 2.9 —
Religious practice 2.9 2.5
Number of answers 70 40

aNumber of participants

People with HSP prominently reported leisure activities, in particular painting, reading or computer-related tasks. Productive activities followed in rank, such as studying, working or performing manual tasks at a psychosocial rehabilitation center. Health care was only marginally represented, mostly referring to physiotherapy. Caregivers prominently associated optimal experience with productive activities, such as work and house chores, and passive leisure (reading, watching TV), followed by family interactions, mostly referring to caregiving. Fisher's exact test highlighted that a significantly higher percentage of caregivers associated optimal experience with family interactions and activities (p < .05).

Overall, these findings suggest that the onset and degenerative course of HSP did not hinder the occurrence of optimal experiences in participants' daily life; on the other side, the disease impacted the kind of activities associated with this experience. In particular, and in line with previous findings (Delle Fave & Massimini, 2005b), leisure tasks involving very limited body activity predominated. Optimal experience was also associated with productive activities, such as work and studying. Participants who could work described their job as an important opportunity to socialize and improve skills and capabilities.

As for caregivers, these results showed that taking care of a family member can be associated with positive and engaging experiences, promoting adequate caring performances but also personal fulfillment and positive family relations (Delle Fave & Massimini, 2004), in spite of the daily challenges and the long-term commitment entailed in this role.

Present challenges and future goals. Table 36.2 shows the percentage distribution of answer categories referring to the present challenges and the future goals perceived by the two groups of participants.

Table 36.2 Percentage Distribution of the Challenges and Goals Perceived by People With HSP and Caregivers

Present Challenges Future Goals
People with HSP (Na = 54) Caregivers (Na = 31) People with HSP (Na = 54) Caregivers (Na = 31)
Productive activities 13.9 — 14.1 9.9
Family 19.5 78.8 27.1 57.7
Standard of living 8.3 6.4 2.4 1.4
Social relations 2.8 — 3.5 1.4
Health care 37.5 6.4 22.3 7.1
Personal life 11.1 4.2 10.6 11.3
Leisure — — 10.6 4.2
Religion — — 2.4 2.8
Volunteering 2.8 4.2 4.6 4.2
Others 4.2 — 2.4 —
Number of answers 72 47 85 71

aNumber of participants

Participants with HSP identified health as their prominent challenge, in particular highlighting the importance of secondary prevention and the need for more frequent and intensive physiotherapy treatments in order to improve motor functionality. Family and productive activities followed, with answers emphasizing the participants' effort to provide their active contribution in these domains (such as “being a good parent” and “going back to work”). The category Personal Life included descriptions of the difficulties in coping with HSP and in pursuing autonomy despite physical constraints. The vast majority of caregivers quoted family as their present challenge, specifically referring to their commitment to provide adequate care to their ill relative. Significant group differences were detected through Fisher's exact test: Productive activities and health emerged as prominent challenges for people with HSP (p <. 05 and p < .001, respectively), while a higher percentage of caregivers referred to family (p < .001).

As concerns future goals, people with HSP prominently referred to family and health; productive activities, leisure, and personal life followed in rank. Among caregivers family largely predominated, with answers referring to the promotion of health and autonomy of their ill relatives. Personal life and productive activities followed in much lower percentages. The prevalence of answers referring to family among caregivers was confirmed by Fisher's exact test, that highlighted a significant group difference in this domain (p < .001).

The answers provided to these two questions by the participants with HSP are consistent with previous studies (Delle Fave & Massimini, 2004) showing that, compared with individuals with congenital disabilities, people with acquired impairments more frequently reported health as a current challenge and a future goal. Acquired pathologies, especially when degenerative in nature, imply a constant commitment in order to prevent complications and to preserve a good quality of life. Family, though not representing a relevant occasion of optimal experiences, predominated among present challenges and future goals. These results can be interpreted in the light of the substantially care-recipient role played by the participants in their family, entailing the perception of a passiveness and dependence that does not allow for the emergence of optimal experiences in this domain, and that at the same time makes the family an essential component of the person's life in the long run.

As concerns caregivers, their answers suggest a pervasive commitment to the health and well-being of their ill relative, in the daily life and in future perspective. Such a substantial investment of energy and attention is, however, counterbalanced by the optimal experiences derived from caregiving. A vast amount of studies have shown that the association of optimal experiences with complex, meaningful, and socially relevant activities—such as caring—plays a crucial role in individual development, promoting eudaimonic well-being and personal growth (Delle Fave et al., 2011).

Caregivers' Perceived Facilitators and Barriers

As discussed in the previous pages, the importance of considering disability from a bio-psycho-social perspective has been endorsed by WHO through the development of the ICF. Besides disease-related constraints, the environmental facilitators and barriers should be taken into account in evaluating health and well-being among people with disabilities and their families. On the other side, the psychological resources that allow people with disabilities and their caregivers to successfully adapt to the situation are specifically investigated by the research domain of positive psychology. We have combined these two approaches in designing a qualitative study conducted among caregivers of children and adolescents with psychophysical disabilities.

Sample, Instruments, and Procedure

A semistructured interview was administered to 196 adult participants. Among them, 105 (83 women and 22 men, with an average age of 41) were parents of children with mild disability attending a primary or secondary public school. The other 91 participants (70 women and 21 men, aged 50 on average) were caregivers of children and adolescents with severe psychophysical disabilities who attended special education courses at Don Carlo Gnocchi Foundation.

The interview questions reflected the ICF model and the construct of family resilience. They investigated the barriers and facilitators perceived by the participants as caregivers in their daily life management and organization, at the personal, family, and social levels. Like in the previous study, no limitations were set to the number of answers that participants could provide to each question. More specifically, the personal, family, and social barriers were explored through the following questions: “What are the needs and problems that you face in the daily care of your child?”; “What are the prominent difficulties for your family?”; “What are the main problems that hinder the social inclusion of your child?” As concerns the investigation of personal, family, and social resources and facilitators, participants were asked, “In your opinion, which personal skills and resources are the most important to cope with this situation?”; “What are the main resources used by your family to cope with this situation?”; “Which services, associations or institutions have been/are helpful to your family?”

The answers were grouped into categories organized according to the ICF perspective, taking into account environmental barriers and resources/facilitators, as well as the functioning level of the care recipient (in its physical, cognitive, emotional, and relational components). The caregivers' personal and family resources were grouped into categories reflecting the major psychological constructs identified by stress and coping research, and by positive psychology.

Perceived Problems and Barriers

As Table 36.3 shows, the main problems that caregivers in both groups perceived in their personal life were related to the child functioning levels (including mobility, autonomy level in daily activities, learning difficulties, and school performance) and to the challenges encountered in the management and organization of daily time budget. These two aspects are often intertwined, especially in situations where severe disabilities impose substantial limitations on children's autonomy and social participation. As reported by a 39-year-old mother of a child with a severe disability, “The needs mainly concern the continued assistance in all daily activities, bathing, dressing, taking him around, and assisting him in any task he wants or has to perform, continuously clashing with his stubbornness and opposition that increase with age.”

Table 36.3 Percentage Distribution of Challenges/Barriers Perceived by Caregivers of Children With Mild and Severe Disabilities at the Personal, Family, and Social Levels

Personal Barriers Family Barriers Social Barriers
Milda (Nc = 105) Severeb (Nc = 91) Milda (Nc = 105) Severeb (Nc = 91) Milda (Nc = 105) Severeb (Nc = 91)
Problem management 25.1 24.3 19.7 23.6 — —
Emotions — — 2.1 1.2 — —
Coherence and meaning — — — 3.1 — —
Resilience development — — — 4.4 — —
Child functioning level 51.9 43.1 15.2 11.4 28.7 26.3
Family relationships 9.6 5.8 17.5 15.1 — —
Work/family balance — — — 3.8 — 1.2
Social attitudes 1.9 12.8 12.2 10.8 34.9 41.1
Services and policies 1.9 10.1 14.5 18.4 13.2 28.8
Other — 3.9 4.3 4.4 2.3 2.6
None 9.6 14.5 3.8 20.9 —
Number of answers 155 181 137 157 143 156

aCaregivers of children and adolescents with mild psychophysical disabilities

bCaregivers of children and adolescents with severe psychophysical disabilities

cNumber of participants

As concerns the family challenges, for both groups of participants they included the daily routine management and the quality of family relationships. As highlighted in the resilience model developed by Walsh and described in the previous pages, the disability of one member influences the whole family, in terms of daily routine organization and reciprocal interactions, imposing the necessity to redefine priorities, roles, and responsibilities. These problems are reflected in the words of a 49-year-old mother:

I think that a family living with a disease like autism is at risk for becoming autistic itself…It is difficult to build meaningful relationships because everything has to be adjusted to times, rituals, stereotypes that cannot be ignored. Even for the child's brothers it is very difficult to find a balance between personal, family and social identity.

Inadequacies in health and social services that directly affected family life were more frequently identified by caregivers of children with severe disabilities, while—interestingly—child functioning was quoted in a relatively low percentage of answers by participants in both groups, suggesting that the development of family cooperation and resilience can effectively counterbalance the negative impact of disability, even in its most severe forms.

The major social barriers identified by caregivers in both groups primarily consisted in the negative social attitudes toward disability. Participants referred to problems related to ignorance, discrimination, and prejudice that can be expressed in different forms. As 43-year-old mother said, “I think that still too many people are scared of disability. In a society where only success, amusement and physical beauty matter, ‘disabled’ like us represent an obstacle to lightness.” A 43-year-old father noted, “People's attitude of compassion. We want our son to be treated like others, no discount.”

The inadequacy of health and social services ranked second for caregivers of children with severe disabilities, while the impact of child health conditions accounted for around one fourth of the answers provided by participants in both groups. It is worth noting that the identification of no problems/barriers was relatively frequent among caregivers of children with mild disabilities, ranking third in reference to the social context, and fourth in reference to family. This result attests to the potential for resilience and successful adaptation that individuals possess in facing suboptimal life conditions, especially when interacting with a supportive and facilitating context.

Perceived Resources and Facilitators

While caregivers' burden and stress-related problems have been often addressed by researchers and practitioners, studies investigating the personal and interpersonal resources that can be mobilized in coping with a relative's disease are still limited. We attempted to shed light on this neglected issue by asking caregivers to describe these resources. Findings are illustrated in Table 36.4.

Table 36.4 Percentage Distribution of Personal, Family, and Social Resources/Facilitators Perceived by Caregivers of Children With Mild and Severe Disabilities

Personal Resources Family Resources Social Resources
Milda (Nc = 105) Severeb (Nc = 91) Milda (Nc = 105) Severeb (Nc = 91) Milda (Nc = 105) Severeb (Nc = 91)
Problem-focused coping 18.6 21.9 4.6 20.8 — —
Patience 31.9 17.5 7.9 — — —
Hardiness 13.3 19.5 6.6 6.7 — —
Resilience 3.7 13.1 3.9 4.2 — —
Educational role 18.7 11.7 — — — —
Optimism and hope 2.2 3.4 2.9 — — —
Emotions — 2.4 — 2.8 — —
Coherence and meaning 1.6 — — — — —
Child functioning level — 1.9 — — 1.4 —
Family relationships — — 22.5 26.4 — —
Social relationships 4.7 4.8 — — — —
Work/family balance — — 2.3 4.8 — —
Services and policies — 2.4 15.8 20.3 75.4 74.4
School — — 9.2 — 10.9 6.2
Associations — — — — 5.4 17.3
Money — — 9.9 6.6 — —
Other 5.3 1.4 3.9 7.4 — —
None — — 10.5 — 6.9 2.1
Number of answers 188 205 151 163 201 225

aCaregivers of children and adolescents with mild psychophysical disabilities

bCaregivers of children and adolescents with severe psychophysical disabilities

cNumber of participants

The participants caring for children with mild disabilities quoted patience as the most important personal resource allowing them to adaptively face the situation. Problem-focused coping strategies and educational competences in interacting with their child—such as listening, talking style, and autonomy support—followed in frequency. The fourth personal resource in rank was hardiness (Maddi, 2002), which includes abilities such as courage, perseverance and commitment toward goal pursuit, and the tendency to approach problems as challenges and opportunities for growth rather than obstacles. These aspects clearly emerge from the answer of a 43-year-old father: “A lot of patience, firmness, and ability to step back in order to make my child more autonomous.” The answers provided by the caregivers of children with severe disabilities fell into the same major categories, though with a different percentage distribution. This group gave less relevance to patience and educational competences, and more importance to resilience and hardiness, highlighting the crucial role of detecting constructive and positive aspects in an objectively problematic condition in order to preserve a good quality of life. These dimensions are clearly expressed by a 61-year-old father: “Courage, faith, desire to find always new solutions to live better (even in the face of disability). Ability not to hide one's own discomfort or difficulties, avoiding seclusion within the home walls, also for the wellbeing of my child.”

As reported in theoretical framework, the family is a fundamental contextual factor influencing the caregivers' functioning and well-being. At this level, the main resources perceived by the participants in both groups were relationships, in terms of family unity, solidarity, and ability to share problems and resources. Such positive relationships often represented the outcome of a challenging growth process of the family system, as a 42-year-old mother described, “After facing a long period of crisis, we are united more than before.”

The support provided to the family by health and educational institutions and professionals was also identified as a prominent resource. Economic affluence and, again, patience were quoted by caregivers of children with mild disabilities. The other group instead emphasized the role of adaptive, problem-centered coping in the daily family adjustment to the situation.

Finally, the resources and facilitators perceived at the social level mainly included social services and policies for participants in both groups. In particular, their answers referred to health and school professionals, such as physicians, physiotherapists, and special education teachers. Caregivers of children with severe disabilities also highlighted the important role played by associations, which are often founded and managed by parents of persons with specific disabilities who can meet and discuss shared problems and related solutions. This aspect emerges from the words of a 52-year-old mother: “I joined an association of families that allowed me to get information and relief….We became friends and we still try to share and help each other.”

Suggestions for a Resource-Focused Practice

The theoretical framework and empirical evidence provided in this chapter underscore the importance of building person-centered intervention programs that, besides personal and environmental limitations and barriers, take into account individual, family, and social resources and facilitators.

The onset of a pathology and the communication of a disease involving a child or a spouse represent traumatic experiences for individuals and families. Nevertheless, a large amount of evidence from the literature and the results presented in the previous pages highlight that people with disabilities and their caregivers can perceive a good quality of life, through the mobilization and improvement of personal resources and with the support of family and social relationships.

Optimal experiences can be retrieved even under difficult circumstances; the heavy and often long-term burden of caregiving can provide opportunities for fulfillment, enjoyment, and gratification, as well as life goals and meanings; behavioral flexibility and resilience allow individuals and families to successfully cope with the disease demands and to pursue developmental goals despite constraints in the daily routine.

At the level of practice, it is worth noting that the constructs developed or implemented in positive psychology research—from self-efficacy to resilience, from optimal experience to sense of coherence—are not just individual features that can be observed and measured, but also represent psychological potentials that can be improved and implemented. Health professionals working with people with disabilities and their caregivers can actively foster this process of resource development and mobilization through their technical competences, but also by offering their empathic support and encouraging their clients' participation in social life.

The promotion of well-being and daily functioning should be based on the evaluation of individuals' specific abilities, interests, and life expectations, with the aim of improving their quality of life through the exposure to both positive and meaningful activities and environments. The human ability to turn difficulties and problems into stimulating challenges and opportunities plays a pivotal role in these situations, and it should be substantially exploited by fostering self-efficacy, personal growth, and adaptive coping. The human tendency to give order and meaning to life events and situations should be supported by helping people with disabilities and their caregivers to identify lifelong projects and occasions of personal development within a disadvantageous situation. In this process, the analysis of the environmental facilitators and barriers could shed light on the pathways to follow in order to promote the collaboration of family members and social networks, and to allow people with disabilities to share their experiences, improve their abilities, and actively contribute to the context they live in.

Some specific hints for interventions, both at the individual and at the social levels, can be derived from the empirical studies presented in this chapter. As concerns people with neurodegenerative diseases like HSP that imply a progressive mobility impairment, at the individual level it would be important to promote the association of optimal experiences with activities fostering physical autonomy and active resource mobilization, rather than passive and purely intellectual leisure tasks. The person's active participation and responsibility in family life management should be encouraged, instead of perpetuating the negative self-representation of a passive and dependent member. At the social and policy levels, involvement in socially meaningful activities should be fostered—through job opportunities, social and cultural initiatives, advocacy campaigns conducted through associations, and local services.

As far as caregivers are concerned, at the individual level the association of optimal experiences with extra-family activities should be promoted, in order to allow them to expand their range of interests and opportunities for well-being in multiple life domains, in order to counterbalance the daily stress related to the caring role (Cramm & Nieboer, 2012). Caregivers should also be encouraged to find positive experiences within the family, beyond and besides their caregiving tasks. The active search for opportunities for diversion and relaxation, as well as a greater attention to the relationship with the other family members, should be encouraged.

Finally, families with disabilities have to deal with social barriers, whose negative impact is less evident but often more relevant than the problems derived from architectonic and physical barriers (Cortinovis et al., 2011; Delle Fave & Massimini, 2005b). The process of resilience development is based on the multiple interactions within a complex system encompassing the individual, the family, the social network, and the community as a whole. Any intervention should systematically explore all the possible actions that can be performed at the contextual level in order to promote personal well-being and/or reduce the social barriers faced by caregivers and caretakers.

Conclusion

In line with the ICF model, a steadily growing research and clinical literature in the domain of chronic illness and disability suggests that resources and barriers identified at one single level—person, family, or society—have multiple repercussions on the individual functioning at all the other levels. It is therefore of paramount importance for psychologists and psychotherapists to focus on the potential for improvement and empowerment of clients' personal resources, with the aim of promoting a virtuous cycle implying, on the one side, the mobilization of family and social facilitators and, on the other side, the reduction of relational and social barriers. In this process, echoing Epictetus's famous statement, the clients should be supported in the endeavor to change what can be changed, to accept what cannot be changed, and to discriminate between the two situations.

Summary Points

  • The worldwide increase in life expectancy entails more years spent in conditions of chronic illness and disability.
  • In line with the bio-psycho-social approach endorsed by WHO's recent International Classification of Functioning, physical health and daily functioning are different concepts: Besides body functions, the latter includes psychological and social resources and barriers.
  • Research in positive psychology highlights the protective role of psychological and social resources in promoting well-being in disease conditions.
  • Based on the ICF model, the investigation of daily functioning, barriers, and resources should involve not only people with chronic diseases, but also their caregivers and families.
  • The majority of people with chronic and degenerative diseases report opportunities for optimal experiences in daily life, at the same time expressing the need for a more active life, better job opportunities, and social participation.
  • Empirical evidence suggests that family caregivers perceive their role as gratifying and enriching, though challenging.
  • Besides personal resources, barriers and assets perceived within the family and social context substantially influence caregivers' and care recipients' well-being and daily functioning.
  • At the practice level, the improvement and the empowerment of psychological resources can enhance a virtuous cycle promoting the mobilization of family and social resources, together with the reduction of relational and social barriers.

References

  1. Antonovsky, A. (1987). Unraveling the mystery of health: How people manage stress and stay well. San Francisco, CA: Jossey-Bass.
  2. Arnold, R., Ranchor, A., Koëter, G., De Jongste, M., & Sanderman, R. (2005). Consequences of chronic obstructive pulmonary disease and chronic heart failure: The relationship between objective and subjective health. Social Science & Medicine, 61, 2144–2154.
  3. Aspinwall, L. G., & Brunhart, S. M. (1996). Distinguishing optimism from denial: Optimistic beliefs predict attention to health threats. Personality and Social Psychology Bulletin, 22, 993–1003.
  4. Bandura, A. (2004). Health promotion by social cognitive means. Health Education and Behavior, 31, 143–164.
  5. Bassi, M., Ferrario, N., Ba, G., Delle Fave, A., & Viganò, C. (2012). Quality of experience during psychosocial rehabilitation: A real-time investigation with Experience Sampling Method. Psychiatric Rehabilitation Journal, 35, 447–453.
  6. Bauer, R., Koepke, F., Sterzinger, L., & Spiessl, H. (2012). Burden, rewards, and coping—the ups and downs of caregivers of people with mental illness. Journal of Nervous and Mental Disease, 200, 928–934.
  7. Bodde, A. E., & Seo, D. (2009). A review of social and environmental barriers to physical activity for adults with intellectual disabilities. Disability and Health Journal, 2, 57–66.
  8. Bonanno, G. A. (2004). Loss, trauma, and human resilience: Have we underestimated the human capacity to thrive after extremely aversive events? American Psychologist, 59, 20–28.
  9. Cadell, S. (2007). The sun always comes out after it rains: Understanding posttraumatic growth in HIV caregivers. Health & Social Work, 32, 169–176.
  10. Carbonneau, H., Caron, C., & Desrosiers, J. (2010). Development of a conceptual framework of positive aspects of caregiving in dementia. Dementia, 9, 327–353.
  11. Conde-Sala, J. L., Garre-Olmo, J., Turro-Garriga, O., Vilalta-Franch, J., & Lopez-Pousa, S. (2010). Differential features of burden between spouse and adult-child caregivers of patients with Alzheimer's disease: An exploratory comparative design. International Journal of Nursing Studies, 47, 1262–1273.
  12. Cortinovis., I., Luraschi, E., Intini, S., Sessa, M., & Delle Fave, A. (2011). The daily experience of people with achondroplasia. Applied Psychology: Health and Well-Being, 3, 207–227.
  13. Cramm, J. M., & Nieboer, A. P. (2012). Longitudinal study of parents' impact on quality of life of children and young adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 25, 20–28.
  14. Csikszentmihalyi, M. (2000). Beyond boredom and anxiety. San Francisco, CA: Jossey-Bass. (Original work published 1975)
  15. Csikszentmihalyi, M., & Massimini, F. (1985). On the psychological selection of bio-cultural information. New Ideas in Psychology, 3, 115–138.
  16. Delle Fave, A. (2010). Development through disability: The unfolding and sharing of psychological resources. In G. W. Burns (Ed.), Happiness, healing, enhancement: Your casebook collection for applying positive psychology in the therapy (pp. 88–99). Hoboken, NJ: Wiley.
  17. Delle Fave, A., & Massimini, F. (2004). Bringing subjectivity into focus: Optimal experiences, life themes, and person-centered rehabilitation. In P. A. Linley & S. Joseph (Eds.), Positive psychology in practice (pp. 581–597). Hoboken, NJ: Wiley.
  18. Delle Fave, A., & Massimini, F. (2005a). The investigation of optimal experience and apathy: developmental and psychosocial implications. European Psychologist, 10, 264–274.
  19. Delle Fave, A., & Massimini, F. (2005b). The relevance of subjective well-being to social policies: Optimal experience and tailored intervention. In F. Huppert, N. Baylis, & B. Keverne (Eds.), The science of well-being (pp. 379–402). Oxford, England: Oxford University Press.
  20. Delle Fave, A., Massimini, F., & Bassi, M. (2011). Psychological selection and optimal experience across cultures. Dordrecht, The Netherlands: Springer Science.
  21. Dixon, D., Johnston, M., Rowley, D., & Pollard, B. (2008). Using the ICF and psychological models of behavior to predict mobility limitations. Rehabilitation Psychology, 53, 191–200.
  22. Ekwall, A. K., Sivberg, B, & Hallberg, I. R. (2007). Older caregivers' coping strategies and sense of coherence in relation to quality of life. Journal of Advanced Nursing, 57, 584–596.
  23. Engel, G. L. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196, 129–136.
  24. Fink, J. K. (2003). Advances in the hereditary spastic paraplegias. Experimental Neurology, 184, 106–110.
  25. Fink, J. K., Heiman-Patterson, T., & Bird, T. (1996). Hereditary spastic paraplegia: Advances in genetic research. Neurology, 46, 1507–1514.
  26. Fitzpatrick, R. (2000). Measurement issues in health-related quality of life: Challenges for health psychology. Psychology and Health, 15, 99–108.
  27. Folkman, S., & Moskowitz, J. T. (2000). Stress, positive emotions and coping. Current Directions in Psychological Science, 9, 115–118.
  28. Fredrickson B. L. (2001). The role of positive emotions in positive psychology: The broaden-and-build theory of positive emotions. American Psychologist, 56, 218–226.
  29. Garmezy, N., & Masten, A. (1991). The protective role of competence indicators in children at risk. In E. M. Cummings, A. L. Greene, & K. H. Karrakei (Eds.), Perspectives on stress and coping (pp. 151–174). Hillsdale, NJ: Erlbaum.
  30. Gerstein, E. D., Crnic, K. A., Blacher, J., & Baker, B. L. (2009). Resilience and the course of daily parenting stress in families of young children with intellectual disabilities. Journal of Intellectual Disability Research, 53, 981–997.
  31. Hellstrom, I., Nolan, M., & Lundh, U. (2007). Sustaining “couplehood”: Spouses' strategies for living positively with dementia. Dementia, 6, 383–409.
  32. Hwang, J., Rivas, J., Fremming, R., Rivas, M., & Crane, K. (2009). Relationship between perceived burden of caring for a family member with Alzheimer's disease and decreased participation in meaningful activities. Occupational Therapy in Health Care, 23, 249–266.
  33. Isen, A. M. (1987). Positive affect, cognitive processes and social behaviour. In L. Berkowitz (Ed.), Advances in experimental social psychology (pp. 203–253). New York, NY: Academic Press.
  34. Isen, A. M., & Geva, N. (1987). The influence of positive affect on acceptable level of risk: The person with a large canoe has a large worry. Organizational Behavior and Human Decision Processes, 39, 145–154.
  35. Jacobson, L. J., Westerberg, M., Malec, J. F., & Lexell, J. (2011). Sense of coherence and disability and the relationship with life satisfaction 6–15 years after traumatic brain injury in northern Sweden. Neuropsychological Rehabilitation, 21, 383–400.
  36. Joseph, S., Becker, S., Elwick, H., & Silburn, R. (2012). Adult Carers Quality of Life Questionnaire (AC-QoL): Development of an evidence-based tool. Mental Health Review Journal, 17, 57–69.
  37. Joseph, S., & Linley, P. A. (2005). Positive adjustment to threatening events: An organismic valuing theory of growth through adversity. Review of General Psychology, 9, 262–280.
  38. Keyes, C. L. M. (2002). The mental health continuum: From languishing to flourishing in life. Journal of Health and Social Behavior, 43, 207–222.
  39. Keyes, C. L. M. (2007). Promoting and protecting mental health as flourishing: A complementary strategy for improving national mental health. American Psychologist, 62, 95–108.
  40. King, L., & Miner, K. (2000). Writing about the perceived benefits of traumatic life events: Implications for physical health. Personality and Social Psychology Bulletin, 26, 220–230.
  41. Lazarus, R., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY: Springer.
  42. Luthar, S. S. (2006). Resilience in development: A synthesis of research across five decades. In D. Cicchetti & D. J. Cohen (Eds.), Developmental psychopathology: Risk, disorder, and adaptation (Vol. 3, 2nd ed., pp. 739–795). Hoboken, NJ: Wiley.
  43. Mackay, R. (2003). Family resilience and good child outcomes: An overview of the research literature. Social Policy Journal of New Zealand, 20, 98–118.
  44. Maddi, S. R. (2002). The story of hardiness: Twenty years of theorizing, research, and practice. Consulting Psychology Journal, 54, 173–185.
  45. Massimini, F., & Delle Fave, A. (2000). Individual development in a bio-cultural perspective. American Psychologist, 55, 24–33.
  46. Molyneux, G. J., McCarthy, G. M., McEniff, S., Cryan, M., & Conroy, R. M. (2008). Prevalence and predictors of carer burden and depression in carers of patients referred to an old age psychiatric service. International Psychogeriatrics, 20, 1193–1202.
  47. Morris, B. A., & Shakespeare-Finch, J. (2011). Rumination, post-traumatic growth, and distress: Structural equation modeling with cancer survivors. Psycho-Oncology, 20, 1176–1183.
  48. Mosher, C. E., Danoff-Burg, S., & Brunker, B. (2006). Post-traumatic growth and psychological adjustment of daughters of breast cancer survivors. Oncology Nursing Forum, 33, 543–551.
  49. Oelofsen, N., & Richardson, P. (2006). Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. Journal of Intellectual & Developmental Disability, 31, 1–12.
  50. Patterson, J. (2002). Understanding family resilience. Journal of Clinical Psychology, 58, 233–246.
  51. Pennix, B. W., Beekman, A. T., Honig, A., Deeg, D. J., Schoevers, R. A., van Eijk, J. T., & van Tilburg, W. (2001). Depression and cardiac mortality. Archives of General Psychiatry, 58, 221–227.
  52. Pollard, C., & Kennedy, P. (2007). A longitudinal analysis of emotional impact, coping strategies and post-traumatic psychological growth following spinal cord injury: A 10-year review. British Journal of Health Psychology, 12, 347–362.
  53. Powell, T., Ekin-Wood, A., & Collin, C. (2012). Post-traumatic growth after head injury: A long-term follow-up. Brain Injury, 21, 31–38.
  54. Rinaldi, P., Spazzafumo, L., Mastriforti, R., Mattioli, P., Marvardi, M., Polidori, M. C.,…Study Group on Brain Aging of the Italian Society of Gerontology and Geriatrics. (2005). Predictors of high level of burden and distress in caregivers of demented patients: Results of an Italian multi center study. International Journal of Geriatric Psychiatry, 20, 168–174.
  55. Robertson, S. M., Zarit, S. H., Duncan, L. G., Rovine, M. J., & Femia, E. E. (2007). Family caregivers' patterns of positive and negative affect. Family Relations, 56, 12–23.
  56. Rutter, M. (1987). Psychosocial resilience and protective mechanisms. American Journal of Orthopsychiatry, 57, 316–331.
  57. Rutterford, N. A., & Wood, R. (2006). Evaluating a theory of stress and adjustment when predicting long-term psychosocial outcome after brain injury. Journal of International Neuropsychological Society, 12, 359–367.
  58. Ryan, R. M., & Deci, E. L. (2001). On happiness and human potentials: A review of research on hedonic and eudaimonic well-being. Annual Review of Psychology, 52, 141–166.
  59. Sarkar, U., Ali, S., & Whooley, M. A. (2009). Self-efficacy as a marker of cardiac function and predictor of heart failure hospitalization and mortality in patients with stable coronary heart disease: Findings from the Heart and Soul Study. Health Psychology, 28, 166–173.
  60. Schopp, L. H., Clark, M. J., Hagglund, K. J., Sherman, A. K., Stout, B. J., Gray, D. B., & Boninger, M. L. (2007). Life activities among individuals with spinal cord injury living in the community: Perceived choice and perceived barriers. Rehabilitation Psychology, 52(1), 82–88.
  61. Scrignaro, M., Barni, S., & Magrin, E. (2009). The combined contribution of social support and coping strategies in predicting post-traumatic growth: A longitudinal study on cancer patients. Psycho-Oncology, 20, 823–831.
  62. Seekins, T., Traci, M., A., Cummings, S., Oreskovich, J., & Reveslot, C. (2008). Assessing environmental factors that affect disability: Establishing a baseline of visitability in a rural state. Rehabilitation Psychology, 53, 80–84.
  63. Semiatin, A. M., & Connor, M. K. (2012). The relation between self-efficacy and positive aspects of caregiving in Alzheimer's disease caregivers. Aging and Mental Health, 16, 683–688.
  64. Serrano-Aguilar, P. G., Lopez-Bastida, J., & Yanes-Lopez, V. (2006). Impact on health-related quality of life and perceived burden of informal caregivers of individuals with Alzheimer's disease. Neuroepidemiology, 27, 136–142.
  65. Simon, J., Murphy, J., & Smith, S. (2008). Building resilience: Appreciate the little things in life. British Journal of Social Work, 38, 218–235.
  66. Skevington, S., & McCrate, F. (2011). Expecting a good quality of life in health: Assessing people with diverse diseases and conditions using the WHOQOL-BREF. Health Expectations, 15, 49–62.
  67. Sodergren, S. C., & Hyland, M. E. (2000). What are the positive consequences of illness? Psychology and Health, 15, 85–97.
  68. Sussman, T., & Regehr, C. (2009). The influence of community-based services on the burden of spouses caring for their partners with dementia. Health & Social Work, 34, 29–39.
  69. Tedeschi, R. G., & Calhoun, L. G. (1996). The Posttraumatic Growth Inventory: Measuring the positive legacy of trauma. Journal of Traumatic Stress, 9, 455–471.
  70. Tennen, H., & Affleck, G. (2002). Benefit-finding and benefit-reminding. In C. R. Snyder & S. J. Lopez (Eds.), Handbook of positive psychology (1st ed., pp. 584–597). New York, NY: Oxford University Press.
  71. Veenhoven, R. (2002). Why social policy needs subjective indicators. Social Indicators Research, 58, 33–45.
  72. Walsh, F. (2003). Family resilience: A framework for clinical practice. Family Process, 42, 1–18.
  73. Walsh, F. (2006). Strengthening family resilience (2nd ed.). New York, NY: Guilford Press.
  74. Walsh, F. (2011). Resilience in families with serious health challenges. In M. Craft-Rosenberg & S. R. Pehler (Eds.), Encyclopedia of family health (pp. 895–899). Thousand Oaks, CA: Sage.
  75. World Health Organization (1946). Preamble to the Constitution of the World Health Organization. Official records of the World Health Organization, no. 2 (p. 100).
  76. World Health Organization. (2001). International Classification of Functioning, Disability and Health (ICF). Geneva, Switzerland: Author.
  77. Word Health Organization (2007). International classification of functioning, disability and health for children and youth. Geneva, Switzerland: Author.
  78. Zautra, A. J., Stuart Hall, J., & Murray, K. E. (2012). Resilience: A new definition of health for people and communities. In J. W. Reich, A. J. Zautra, & J. Stuart Hall (Eds.), The handbook of adult resilience (pp. 3–29). New York, NY: Guilford Press.
..................Content has been hidden....................

You can't read the all page of ebook, please click here login for view all page.
Reset
18.222.104.196