Dissertação(mestrado) - Universidade Federal do Rio Grande, Programa de Pós-Graduação em Educação Ambiental, Instituto de Educação, 2011. / Submitted by eloisa silva (eloisa1_silva@yahoo.com.br) on 2012-07-12T00:10:56Z No. of bitstreams: 1 dissertao priscila chaves: 908463 bytes, checksum: ccb9fd4919b3655527089a1acb11ba22 (MD5) / Approved for entry into archive by Bruna Vieira(bruninha_vieira@ibest.com.br) on 2012-09-24T23:37:17Z (GMT) No. of bitstreams: 1 dissertao priscila chaves: 908463 bytes, checksum: ccb9fd4919b3655527089a1acb11ba22 (MD5) / Made available in DSpace on 2012-09-24T23:37:17Z (GMT). No. of bitstreams: 1 dissertao priscila chaves: 908463 bytes, checksum: ccb9fd4919b3655527089a1acb11ba22 (MD5) Previous issue date: 2011 / No Brasil há um grande contingente de pessoas desempregadas o que fortalece o mercado do trabalho informal. Muitas famílias fazem da coleta de resíduos sólidos e posterior comercialização a principal fonte de sobrevivência financeira. Entretanto, as precárias condições que envolvem esta atividade podem resultar em risco e exclusão social para estes grupos familiares. Diante disso, a presente pesquisa teve por objetivo investigar os possíveis riscos e indicadores de proteção que podem resultar em processos de resiliência familiar de pessoas que vivem sob estas condições. Foram entrevistadas três famílias de catadores de resíduos sólidos urbanos do município de Rio Grande/RS, Brasil. A metodologia que orientou este estudo foi a “Inserção Ecológica”, associada a outros procedimentos como: a observação naturalística, o diário de campo e a entrevista semi-estruturada, que foi utilizada a partir dos princípios básicos da Entrevista reflexiva. Após a coleta de dados, as entrevistas foram transcritas na íntegra e analisadas seguindo a grounded-theory. Torna-se importante destacar que as três famílias participantes deste estudo são lideradas por mulheres. A partir dos relatos das entrevistadas e da inserção no ambiente natural das famílias se pode constatar processos de resiliência, pois diante das situações de crise, os grupos familiares buscam diferentes estratégias para superá-las. Os resultados evidenciam o papel de proteção de alguns contextos ecológicos, como da família ampliada, dos vizinhos, dos amigos, da escola, dos serviços de saúde e social, e das comunidades religiosas. Essa trama social se constitui em um indicador de fundamental importância na promoção do desenvolvimento destes grupos familiares. Os relatos demonstram que as dificuldades das líderes das famílias entrevistadas de inserção no mercado de trabalho, estão relacionadas a fatores como a baixa escolaridade, condição social (falta de oportunidades e de apoio), e limitações na disponibilidade de tempo. Esta limitação se institui devido aos vários papéis que são atribuídos às responsáveis por estes contextos familiares, como o cuidado e proteção dos membros que integram o grupo familiar, a realização das tarefas domésticas e a busca pelo sustento da família, o que sobrecarrega a figura feminina. Diante de tais responsabilidades, essas mulheres encontraram nas características da profissão de catadora uma alternativa para conseguir garantir sua sobrevida junto ao grupo familiar, pois conseguem trabalhar para obter o sustento e cuidar de suas famílias. Em duas das famílias estudadas, as crianças acompanham e ajudam as responsáveis na realização do trabalho. Além disso, elas denotam consciência das relações de exploração relacionadas ao processo de reciclagem. E apesar dos riscos pessoais e sociais da profissão, as mulheres percebem positivamente sua trajetória pessoal. Esta investigação demonstra a necessidade de formulação de novas políticas públicas que possibilitem uma melhor qualidade de vida para essas trabalhadoras informais; de promoção de ações para o fortalecimento dos participantes da pesquisa na busca pelo exercício da cidadania; e da conscientização dos problemas socioambientais. Nesta perspectiva, a Educação Ambiental é um campo de conhecimentos que pode subsidiar políticas públicas que valorizem os direitos e auxiliem a promover qualidade de vida digna para estas populações. / There is a large number of unemployed people in Brazil which strengthens the informal labor market. Many families make the solid waste collection and subsequent commercialization as the main source of their financial survival. However, the poor conditions surrounding this activity can result in risk and social exclusion for these family groups. Thus, the present study aimed to investigate the possible risks factors and protection indicators that can result in processes of family resilience of people living under these conditions. We interviewed three families of collectors of solid waste in the city of Rio Grande / RS, Brazil. The methodology that guided this study was the "Ecological Engagement" associated with other procedures such as naturalistic observation, field diary and semi-structured interview, which was used from the basic principles of reflexive interview. After collecting data, interviews were transcribed and analyzed following the grounded-theory. It is important to emphasize that the three families who took part of this study were headed by women. From the reports of the respondents and the observation of families in their natural environment it can be seen that in the face of the crisis situations, the family groups seek different strategies to overcome them. The results highlighted the protective role of some ecological contexts, such as extended family, neighbors, friends, school, health services and social and religious communities. This social tissue constitutes an indicator of fundamental importance in promoting the development of these family groups. The reports showed that the difficulties of the leaders of the interviewed families for inclusion in the labor market are related to factors such as poor education, social status (lack of opportunities and support), and limitations on the availability of time. This limitation is due to the various roles that are assigned to account for these family contexts, such as care and protection of members of the family group, the household chores and the pursuit of household, which increases the load of the female figure´s tasks. Given these responsibilities, these women found in the characteristics of the profession of collectors, an alternative to be able to guarantee the family group survival, a way to make a living and time to take care of their families. In two of the families, children accompany and assist the mothers responsible in carrying out the work. Moreover, they denote awareness of exploitative relationships related to the recycling process. And despite the personal and social risks of the profession, women perceive a positive personal background. This research demonstrates the need to formulate new public policies that allow a better quality of life for these informal workers, promoting actions for the empowerment of the participants in finding the exercise of citizenship and awareness of social environmental problems. In this perspective, Environmental Education is a field of knowledge that can support public policies that enhance the rights and help to promote decent quality of life for these populations.

Dissertação(mestrado) - Universidade Federal do Rio Grande, Programa de Pós-Graduação em Educação Ambiental, Instituto de Educação, 2011. / Submitted by eloisa silva (eloisa1_silva@yahoo.com.br) on 2012-08-14T18:39:04Z No. of bitstreams: 1 dissertao priscila chaves: 908463 bytes, checksum: ccb9fd4919b3655527089a1acb11ba22 (MD5) / Approved for entry into archive by Bruna Vieira(bruninha_vieira@ibest.com.br) on 2012-12-06T19:11:49Z (GMT) No. of bitstreams: 1 dissertao priscila chaves: 908463 bytes, checksum: ccb9fd4919b3655527089a1acb11ba22 (MD5) / Made available in DSpace on 2012-12-06T19:11:49Z (GMT). No. of bitstreams: 1 dissertao priscila chaves: 908463 bytes, checksum: ccb9fd4919b3655527089a1acb11ba22 (MD5) Previous issue date: 2011 / No Brasil há um grande contingente de pessoas desempregadas o que fortalece o mercado do trabalho informal. Muitas famílias fazem da coleta de resíduos sólidos e posterior comercialização a principal fonte de sobrevivência financeira. Entretanto, as precárias condições que envolvem esta atividade podem resultar em risco e exclusão social para estes grupos familiares. Diante disso, a presente pesquisa teve por objetivo investigar os possíveis riscos e indicadores de proteção que podem resultar em processos de resiliência familiar de pessoas que vivem sob estas condições. Foram entrevistadas três famílias de catadores de resíduos sólidos urbanos do município de Rio Grande/RS, Brasil. A metodologia que orientou este estudo foi a “Inserção Ecológica”, associada a outros procedimentos como: a observação naturalística, o diário de campo e a entrevista semi-estruturada, que foi utilizada a partir dos princípios básicos da Entrevista reflexiva. Após a coleta de dados, as entrevistas foram transcritas na íntegra e analisadas seguindo a grounded-theory. Torna-se importante destacar que as três famílias participantes deste estudo são lideradas por mulheres. A partir dos relatos das entrevistadas e da inserção no ambiente natural das famílias se pode constatar processos de resiliência, pois diante das situações de crise, os grupos familiares buscam diferentes estratégias para superá-las. Os resultados evidenciam o papel de proteção de alguns contextos ecológicos, como da família ampliada, dos vizinhos, dos amigos, da escola, dos serviços de saúde e social, e das comunidades religiosas. Essa trama social se constitui em um indicador de fundamental importância na promoção do desenvolvimento destes grupos familiares. Os relatos demonstram que as dificuldades das líderes das famílias entrevistadas de inserção no mercado de trabalho, estão relacionadas a fatores como a baixa escolaridade, condição social (falta de oportunidades e de apoio), e limitações na disponibilidade de tempo. Esta limitação se institui devido aos vários papéis que são atribuídos às responsáveis por estes contextos familiares, como o cuidado e proteção dos membros que integram o grupo familiar, a realização das tarefas domésticas e a busca pelo sustento da família, o que sobrecarrega a figura feminina. Diante de tais responsabilidades, essas mulheres encontraram nas características da profissão de catadora uma alternativa para conseguir garantir sua sobrevida junto ao grupo familiar, pois conseguem trabalhar para obter o sustento e cuidar de suas famílias. Em duas das famílias estudadas, as crianças acompanham e ajudam as responsáveis na realização do trabalho. Além disso, elas denotam consciência das relações de exploração relacionadas ao processo de reciclagem. E apesar dos riscos pessoais e sociais da profissão, as mulheres percebem positivamente sua trajetória pessoal. Esta investigação demonstra a necessidade de formulação de novas políticas públicas que possibilitem uma melhor qualidade de vida para essas trabalhadoras informais; de promoção de ações para o fortalecimento dos participantes da pesquisa na busca pelo exercício da cidadania; e da conscientização dos problemas socioambientais. Nesta perspectiva, a Educação Ambiental é um campo de conhecimentos que pode subsidiar políticas públicas que valorizem os direitos e auxiliem a promover qualidade de vida digna para estas populações. / There is a large number of unemployed people in Brazil which strengthens the informal labor market. Many families make the solid waste collection and subsequent commercialization as the main source of their financial survival. However, the poor conditions surrounding this activity can result in risk and social exclusion for these family groups. Thus, the present study aimed to investigate the possible risks factors and protection indicators that can result in processes of family resilience of people living under these conditions. We interviewed three families of collectors of solid waste in the city of Rio Grande / RS, Brazil. The methodology that guided this study was the "Ecological Engagement" associated with other procedures such as naturalistic observation, field diary and semi-structured interview, which was used from the basic principles of reflexive interview. After collecting data, interviews were transcribed and analyzed following the grounded-theory. It is important to emphasize that the three families who took part of this study were headed by women. From the reports of the respondents and the observation of families in their natural environment it can be seen that in the face of the crisis situations, the family groups seek different strategies to overcome them. The results highlighted the protective role of some ecological contexts, such as extended family, neighbors, friends, school, health services and social and religious communities. This social tissue constitutes an indicator of fundamental importance in promoting the development of these family groups. The reports showed that the difficulties of the leaders of the interviewed families for inclusion in the labor market are related to factors such as poor education, social status (lack of opportunities and support), and limitations on the availability of time. This limitation is due to the various roles that are assigned to account for these family contexts, such as care and protection of members of the family group, the household chores and the pursuit of household, which increases the load of the female figure´s tasks. Given these responsibilities, these women found in the characteristics of the profession of collectors, an alternative to be able to guarantee the family group survival, a way to make a living and time to take care of their families. In two of the families, children accompany and assist the mothers responsible in carrying out the work. Moreover, they denote awareness of exploitative relationships related to the recycling process. And despite the personal and social risks of the profession, women perceive a positive personal background. This research demonstrates the need to formulate new public policies that allow a better quality of life for these informal workers, promoting actions for the empowerment of the participants in finding the exercise of citizenship and awareness of social environmental problems. In this perspective, Environmental Education is a field of knowledge that can support public policies that enhance the rights and help to promote decent quality of life for these populations.

In 2019, diabetes affected approximately 283,000 individuals, aged 20 years or younger, in the U.S. Due to illness symptoms (e.g., hypo/hyperglycemia) and disease-related complications (e.g., nephropathy), individuals report poor health-related quality of life. However, individual-level, family-oriented, and health care system factors may affect perceptions of a child’s overall health status. For example, beliefs of having spent enough time with the doctor may predict proactive health behaviors and perceptions of health. Overall health status may also be indirectly related to time spent in medical conversations. For instance, perceptions of shared decision-making (e.g., exploring pros and cons of treatments together) between families and providers may, in turn, foster family empowerment and resiliency (i.e., ability to adapt, cope, and overcome challenges) in the context of caring for a child with a chronic illness, with positive implications for perceived health status of their child. This study aims to examine the relationships of these variables. At the bivariate level, it was hypothesized that time spent in visits, shared decision making, family resilience, and perceived health status of the child would all be positively related. At the multivariate level, it was hypothesized that doctors working collaboratively with parents and family resilience would serially mediate the relation between time spent in medical visits and perceived health, such that more time spent with the doctor would be associated with perception of collaborative decision making and, in turn, higher levels of resiliency and better overall health status from parents’ perspectives. Utilizing data from the National Survey of Child and Adolescent Health from 2020-2021, this study examined survey responses from 369 parents of children with a reported diabetes diagnosis. Responses were extracted from a larger survey for questions related to time spent with providers in prevention focused visits, collaborative decision-making, family resilience, and health status of the child. Bivariate correlations and serial mediation analyses, per Hayes (2013), were conducted, covarying age, sex, ethnicity of child, health insurance, family structure, income, and education level of parents. Bivariate analyses showed some variables were significantly related in hypothesized directions (p < .05). In serial mediation analyses (10,000 bootstrapped samples), the total effect of time spent with the doctor on overall health status was nonsignificant (t = 0.7767, p = 0.4383), and the direct effect was also nonsignificant when mediators (i.e., collaborative decision making, family resilience) were added (t = 0.805 CI= -0.0044, 0.0122), indicating no serial mediation. Controlling for the effects of the other mediator, a significant indirect effect was found through collaborative decision making (t= 1.9181 CI = 0.0015-0.0940) but not family resilience (t = 0.9565 CI=-0.0059-0.478). This study demonstrates that collaborative decision making with parents mediates the relationship between time spent in preventative health care visits and overall health status. Changes such as policies that incentivize quality of care rather than number of billable visits, or establishment of patient centered medical homes, could support appointments of sufficient length that would allow for collaboration and, in turn, better perceived health status for those affected by diabetes.

<p dir="ltr">Families experiencing homelessness and housing instability (FEH/HI) face myriad challenges, placing their children at risk for adverse outcomes. Research typically adopts a deficit-based approach to meet immediate needs, but this may limit understanding of the children’s experiences. Recognizing children’s strengths is important for improving their health, development, and support. Resilience and family resilience are concepts that draw on a strengths-based approach. However, there is a need for more research to identify the strengths, such as resilience, among families and their children who are not stably housed. The present research seeks to address the gaps in the literature by examining the resilience perceptions and experiences of adolescents in FEH/HI, as much of the existing research focuses on the adult perspectives, within a family resilience framework through multiple studies. Study 1 (Chapter 2) systematically reviewed existing research on resilience and family resilience within FEH/HI. An analysis of 27 studies identified resilience-related factors across individual, interpersonal, and community domains. Study 2 (Chapter 3) integrated a strengths- and deficit-based approach to explore the challenges and strengths of children in FEH/HI from the perspectives of parents/caregivers and service providers. Semi-structured interviews with 17 parents/caregivers and 15 service providers identified challenges and strengths at the individual, interpersonal, and system levels. Study 3 (Chapter 4) investigated how adolescents within FEH/HI experience and make meaning of family resilience in their day-to-day lives using photo-elicitation (PE) and Froma Walsh’s family resilience framework. Four adolescents participated and took photographs depicting family resilience within their families. Together, findings from these studies provide insights into the strengths and resilience within FEH/HI. Moreover, they emphasize the need for strengths-based approaches in research and practice to support the health, development, and wellbeing of children and adolescents in FEH/HI.</p>

Although the White Paper on Families (2013) stipulates that family resilience should be strengthened in family preservation services, no guidelines exist for social workers in the South African context to do so. A need for practice guidelines for social workers in rendering services to families to strengthen family resilience was identified. The following central research question was formulated: How and by doing what, can social workers foster and sustain family resilience? The Intervention Design and Development (IDD) model of Rothman and Thomas (1994) was adapted for the study which included qualitative research to explore and describe the understanding, experiences and suggestions of social workers on family resilience for informing the family resilience intervention guidelines. Data was collected through focus- group and face-to-face semi-structured interviews with social workers employed by the Department of Social Development, and the NGOs from Gauteng, North West and Limpopo province. Tesch’s steps (cited in Creswell 2009:186) were used to analyse the data systematically and data was verified by Guba’s model (cited in Krefting 1991:214–222). Implementing steps 1–5 of phase 1, steps 1–3 of phase 2, step 2 of phase 3 and steps 1–3 of phase 4 of the IDD model, “Practice Guidelines for Social Workers to foster and sustain Family Resilience” (“The Guidelines”) were developed by translating the family resilience theory into practice to guide social workers to be able to develop and implement a family resilience intervention. The content of “The Guidelines” include an introduction containing the social work service delivery principles, the theoretical approaches of service delivery to families and the legislative and policy framework for services to families that would underpin a family resilience intervention. Section 1 of “The Guidelines” was developed and structured around the understanding of the family resilience construct and the family resilience process model on how family resilience operates. Section 2 of “The Guidelines” is presented in a question and answer format. This section provides practical guidelines on how to identify the target group for family resilience interventions, the reciprocal relationship between individual resilience and family resilience, family resilience interventions following the social work intervention process (i.e. intake, developmental assessment, a family developmental plan, and intervention strategies in accordance with the basket of services for families and monitoring and evaluation), how to integrate the domains of family resilience into the family resilience intervention, the need for education of both the social worker and client family on family resilience, the multi-dimensional aspects of the family requiring a multi-disciplinary approach and the role that the safety of family members play when rendering a family resilience intervention. / Social Work / D. Phil. (Social Work)

Le but de cette étude est de proposer une conceptualisation de la résilience familiale en tant que processus au sein de couples dont la femme est atteinte d’insuffisance cardiaque (IC). D’année en année, cette maladie cardiaque chronique afflige non seulement un nombre croissant de femmes mais tout autant leur partenaire de vie. On reconnaît de plus en plus que l’expérience de ces femmes diffère de celle de leur homologue masculin. Quant à l’expérience de leur conjoint et celle en tant que couple, ces dernières demeurent toujours peu abordées dans les écrits. Les couples constitués d’une femme atteinte d’IC doivent affronter de nombreuses difficultés inhérentes à l’IC qui peuvent les amener à faire preuve de résilience familiale. Pour atteindre notre but, une approche par théorisation ancrée a été utilisée. Les données ont été recueillies à l’aide d’entrevues semi-structurées conjointes auprès de 12 couples, d’un questionnaire sociodémographique et de notes de terrain. L’analyse de ces données a permis de proposer cette conceptualisation de la résilience familiale en tant que processus au sein de ces couples. L’IC au féminin est une expérience empreinte de difficultés pour les couples. Ils font face au choc encouru par le lot de bouleversements liés à l’IC qui perturbent à jamais tous les plans de leur vie conjugale. Devant une telle situation de vie aussi déplorable, ils sont appelés à s’engager dans un processus de résilience familiale. Cet engagement s’actualise par la mise en place de maintes stratégies en majorité conjugales, sauf quelques-unes qui relèvent de chaque membre des couples, et ce, selon deux perspectives de la résilience familiale. En effet, les couples rebondissent, selon la première perspective, en faisant face au choc de façons individuelle et conjugale. Sur le plan individuel, les membres tendent à se prendre en main tout en conservant leur propre autonomie. Pour ce faire, les femmes atteintes d’IC prennent, d’une part, le contrôle de l’IC et de ses manifestations et, d’autre part, soin de leur personne sur les plans physique et psychologique. Prendre ce contrôle devient possible en gérant leur énergie, en découvrant des astuces et en se responsabilisant face à l’IC. Parallèlement, les conjoints privilégient une seule et unique stratégie individuelle, soit de s’ouvrir à d’autres façons de faire. Quant au plan conjugal, les couples tendent à préserver à la fois leur autonomie et leur complicité à travers l’expérience liée à l’IC. A cette fin, ils font place à la réciprocité du prendre soin et s’activent à solidifier et réitérer leur autonomie conjugale en s’ouvrant aux ressources familiales et communautaires et en dosant la place laissée à l’IC au sein de leur couple. Selon la seconde perspective, les couples rebondissent, cette fois, en ressortant grandis, et ce, en découvrant de nouvelles façons de faire et en donnant un sens à leur expérience liée à l’IC. Pour découvrir de nouvelles façons, ils s’adonnent ensemble à des activités revisitées. Pour donner un sens, ils relativisent les bouleversements liés à l’IC qui s’actualisent par ces stratégies : dresser un bilan de la vie conjugale/familiale, adopter des leitmotive propices, et finalement, découvrir et se laisser porter par la magie des petits-enfants. À notre avis, les connaissances qui découlent de cette conceptualisation de la résilience familiale en tant que processus contribuent à l’avancement de connaissances dans le domaine des sciences infirmières. Cet apport de connaissances devrait aider les infirmières à mieux comprendre ce processus et contribuer au renouvellement des pratiques infirmières auprès des couples aux prises avec l’IC au féminin. / The purpose of this study is to propose a conceptualization of family resilience as a process undertaken by couples where the woman is suffering from chronic heart failure (CHF). Year after year, this chronic disease afflicts not only a growing number of women, but also, and just as much, their life partner. There is increasing recognition that the experience of these women differs from that of their male counterparts. The experience of the male partner as well as the experience of the couple are not often discussed in the literature. The couple consisting of a woman with CHF faces many difficulties inherent in the CHF, difficulties that may require the couple to show family resilience. To achieve our goal, a grounded theory approach was chosen. Data collection used joint semi-structured interviews with 12 couples. As well, a sociodemographic questionnaire and field notes were used. Rigorous analysis of the data permits the proposal of a conceptualization of family resilience as a process undertaken by these couples. In fact, the CHF of the woman is a difficult experience for the couple. Each one faces a shock incurred by the many upheavals associated with CHF that disrupt forever all the plans of their life together. In such an unfavorable life situation, they are called to engage in a process of family resilience. According to two perspectives of family resilience, their commitment to such a process is actualized by the implementation of many strategies, most of which are marital, though a few of them are carried out separately by each member of the couple. Indeed, according to the first perspective, couples bounce back in facing the shock of the diagnosis both individually and as a couple. Individually, each member of the couple tends to take charge while retaining his or her autonomy. To do this, women with CHF take control of the illness and its symptoms, and take care of themselves both physically and psychologically. To do so requires managing their energy, discovering inventiveness and taking responsibility for the CHF. Meanwhile, their male partner prefer the single individual strategy of becoming open to other ways of doing things. As for couple strategies, couples tend to maintain both their independence and their complicity in the experience related to the CHF. To this end, they use their reciprocity of care and work to strengthen and reaffirm their conjugal autonomy by being more open to extended family and community and by carefully measuring how much place the CHF will have in their relationship. According to the second perspective, couples bounce back, this time in growing as a couple by discovering new ways of behaving and finding meaning in their experience of living with CHF. To discover new ways, they revisit together all previous activities. To find meaning, they relativize the upheavals of the CHF by such strategies as a life review of their experience as couple and family, the adoption of suitable leitmotifs and, finally, the discovery and appreciation of grandchildren. In our opinion, the findings of this study make an important contribution to nursing knowledge. This should help nurses to better understand the process of family resilience as a process and contribute to the improvement of nursing practice with couples struggling with CHF in women.

This dissertation concerns the family context of self-determination in adults with intellectual disabilities (ID) during life transitions. Although self-determination is interpreted in different ways in different disciplines, the construct is frequently used to describe the attitudes and behaviours that allow people to feel autonomous and causal in their lives. Research on self-determination in adolescents and adults with ID has commonly occurred in community and special education sectors, with an emphasis on arranging supports for people with ID to develop component self-determination skills, like choice making, problem solving, and goal setting. From the perspective of organismic-dialectical theories, people develop and express self-determination through relationships and person-environment interactions at multiple system levels. Further research on the way family interactions and supports influence the self-determination of adults with ID is important. To address this need, this dissertation includes a qualitative study presented in two manuscripts and a quantitative study presented in one manuscript. The qualitative study explored processes and challenges in the family system during significant life transitions with an adult family member with ID. Families participated in semi-structured interviews and ethnographic observations of daily activities every three to four months for one year. Manuscript 1 concerns the influence of family processes on the self-determination of two young adults with ID as they attained adult roles in the community. Parents were observed to model goal setting, encourage choice making, and scaffold new skills, which helped the young adults with ID to experience autonomous motivation in their transitions. Parents reported feeling unsure of the best way to promote their adult child’s independence while ensuring his or her safety. They tried to resolve this dilemma with open and honest communication. Most interestingly, families collaborated in choice making to the extent that every family member perceived autonomy in transition planning and implementation. Manuscript 2 concerns the influence of transition processes and challenges on the quality of life and resilience of four families with an adult family member with ID. Although families reported different transition types, they progressed through similar transition stages. They invested in quality of life and self-determination as a foundation, considered future support needs, pre-planned and actively planned transitions, implemented transitions, adjusted to new roles and routines, and reflected upon their growth. Although all families experienced challenges during their transitions, two families entered a state of crisis when they did not receive mental health and residential supports. Findings highlight that transitions are lifelong processes in the family system, and risk and protective factors at multiple system levels affect resilience and self-determination. The quantitative study, presented in Manuscript 3, considers that the family system functions within broader socioecological environments that include formal services for adults with ID. Community participation supports provide opportunities to develop self-determination in recreational, educational, and vocational activities. In a cohort of families requesting community participation supports, the vast majority of parents endorsed the expectation that this service would improve choice-making outcomes for their adult child with ID. Preliminary results suggest that the gender and prior choice-making experience of the adult with ID may be associated with the odds of parents endorsing this expectation. The General Discussion integrates the primary findings from each manuscript within a conceptual framework informed by self-determination theory, family systems theory, and family resilience models. This dissertation has theoretical implications for the way the self-determination construct is understood and applied in research with families with a family member with ID. Further, this dissertation reveals practical implications for supporting families with a family member with ID during important life transitions.

Le but de cette étude est de proposer une conceptualisation de la résilience familiale en tant que processus au sein de couples dont la femme est atteinte d’insuffisance cardiaque (IC). D’année en année, cette maladie cardiaque chronique afflige non seulement un nombre croissant de femmes mais tout autant leur partenaire de vie. On reconnaît de plus en plus que l’expérience de ces femmes diffère de celle de leur homologue masculin. Quant à l’expérience de leur conjoint et celle en tant que couple, ces dernières demeurent toujours peu abordées dans les écrits. Les couples constitués d’une femme atteinte d’IC doivent affronter de nombreuses difficultés inhérentes à l’IC qui peuvent les amener à faire preuve de résilience familiale. Pour atteindre notre but, une approche par théorisation ancrée a été utilisée. Les données ont été recueillies à l’aide d’entrevues semi-structurées conjointes auprès de 12 couples, d’un questionnaire sociodémographique et de notes de terrain. L’analyse de ces données a permis de proposer cette conceptualisation de la résilience familiale en tant que processus au sein de ces couples. L’IC au féminin est une expérience empreinte de difficultés pour les couples. Ils font face au choc encouru par le lot de bouleversements liés à l’IC qui perturbent à jamais tous les plans de leur vie conjugale. Devant une telle situation de vie aussi déplorable, ils sont appelés à s’engager dans un processus de résilience familiale. Cet engagement s’actualise par la mise en place de maintes stratégies en majorité conjugales, sauf quelques-unes qui relèvent de chaque membre des couples, et ce, selon deux perspectives de la résilience familiale. En effet, les couples rebondissent, selon la première perspective, en faisant face au choc de façons individuelle et conjugale. Sur le plan individuel, les membres tendent à se prendre en main tout en conservant leur propre autonomie. Pour ce faire, les femmes atteintes d’IC prennent, d’une part, le contrôle de l’IC et de ses manifestations et, d’autre part, soin de leur personne sur les plans physique et psychologique. Prendre ce contrôle devient possible en gérant leur énergie, en découvrant des astuces et en se responsabilisant face à l’IC. Parallèlement, les conjoints privilégient une seule et unique stratégie individuelle, soit de s’ouvrir à d’autres façons de faire. Quant au plan conjugal, les couples tendent à préserver à la fois leur autonomie et leur complicité à travers l’expérience liée à l’IC. A cette fin, ils font place à la réciprocité du prendre soin et s’activent à solidifier et réitérer leur autonomie conjugale en s’ouvrant aux ressources familiales et communautaires et en dosant la place laissée à l’IC au sein de leur couple. Selon la seconde perspective, les couples rebondissent, cette fois, en ressortant grandis, et ce, en découvrant de nouvelles façons de faire et en donnant un sens à leur expérience liée à l’IC. Pour découvrir de nouvelles façons, ils s’adonnent ensemble à des activités revisitées. Pour donner un sens, ils relativisent les bouleversements liés à l’IC qui s’actualisent par ces stratégies : dresser un bilan de la vie conjugale/familiale, adopter des leitmotive propices, et finalement, découvrir et se laisser porter par la magie des petits-enfants. À notre avis, les connaissances qui découlent de cette conceptualisation de la résilience familiale en tant que processus contribuent à l’avancement de connaissances dans le domaine des sciences infirmières. Cet apport de connaissances devrait aider les infirmières à mieux comprendre ce processus et contribuer au renouvellement des pratiques infirmières auprès des couples aux prises avec l’IC au féminin. / The purpose of this study is to propose a conceptualization of family resilience as a process undertaken by couples where the woman is suffering from chronic heart failure (CHF). Year after year, this chronic disease afflicts not only a growing number of women, but also, and just as much, their life partner. There is increasing recognition that the experience of these women differs from that of their male counterparts. The experience of the male partner as well as the experience of the couple are not often discussed in the literature. The couple consisting of a woman with CHF faces many difficulties inherent in the CHF, difficulties that may require the couple to show family resilience. To achieve our goal, a grounded theory approach was chosen. Data collection used joint semi-structured interviews with 12 couples. As well, a sociodemographic questionnaire and field notes were used. Rigorous analysis of the data permits the proposal of a conceptualization of family resilience as a process undertaken by these couples. In fact, the CHF of the woman is a difficult experience for the couple. Each one faces a shock incurred by the many upheavals associated with CHF that disrupt forever all the plans of their life together. In such an unfavorable life situation, they are called to engage in a process of family resilience. According to two perspectives of family resilience, their commitment to such a process is actualized by the implementation of many strategies, most of which are marital, though a few of them are carried out separately by each member of the couple. Indeed, according to the first perspective, couples bounce back in facing the shock of the diagnosis both individually and as a couple. Individually, each member of the couple tends to take charge while retaining his or her autonomy. To do this, women with CHF take control of the illness and its symptoms, and take care of themselves both physically and psychologically. To do so requires managing their energy, discovering inventiveness and taking responsibility for the CHF. Meanwhile, their male partner prefer the single individual strategy of becoming open to other ways of doing things. As for couple strategies, couples tend to maintain both their independence and their complicity in the experience related to the CHF. To this end, they use their reciprocity of care and work to strengthen and reaffirm their conjugal autonomy by being more open to extended family and community and by carefully measuring how much place the CHF will have in their relationship. According to the second perspective, couples bounce back, this time in growing as a couple by discovering new ways of behaving and finding meaning in their experience of living with CHF. To discover new ways, they revisit together all previous activities. To find meaning, they relativize the upheavals of the CHF by such strategies as a life review of their experience as couple and family, the adoption of suitable leitmotifs and, finally, the discovery and appreciation of grandchildren. In our opinion, the findings of this study make an important contribution to nursing knowledge. This should help nurses to better understand the process of family resilience as a process and contribute to the improvement of nursing practice with couples struggling with CHF in women.

Chronic illness and invisible disability are impactful contexts during emerging adulthood and the launching stage of the family life cycle (Beatty, 2011; Capelle, Visser, and Vosman, 2016; Young et al., 2010). The parent-child relationship is important to both developmental and health outcomes in families coping with chronic illness during emerging adulthood (Crandell, Sandelowski, Leeman, Haville, and Knafle, 2018; Fenton, Ferries, Ko, Javalkar, and Hooper, 2015; Waldboth, Patch, Mahrer-Imhaf, and Metcalfe, 2016). While informed clinical competency in counseling families experiencing disablement is a diversity-affirmative ethical imperative among psychotherapists (Mona et al., 2017), little is known in family therapy about how parents and emerging adult children experience launching with chronic illness. This qualitative study explored the parent-child dyadic experience of living with a chronic illness called Postural Orthostatic Tachycardia Syndrome (POTS) during emerging adulthood. Seven dyads of parents and their emerging adult children with POTS were interviewed. Data analysis of in-depth interviews using Moustakas's (1994) transcendental phenomenology uncovered eight thematic clusters of meaning in the shared lived experience of POTS at the launching stage of the family life cycle. Clinical implications for family therapists were explored using Rolland's family system-illness (FSI) model of medical family therapy. Study limitations and future directions for further research were discussed. / Master of Science / More and more young adults are living with chronic illness. Postural Orthostatic Tachycardia Syndrome (POTS) is a little-known chronic illness that tends to begin during adolescence. Like many health problems that disproportionately affect women, POTS is often overlooked by doctors. POTS symptoms, such as dizziness and cognitive difficulty, impact a person's ability to engage in preferred activities and identities. Family therapists can play an impactful role in supporting parents and children with POTS through developmental tasks related to launching an emerging adult in the context of this complex and widely misunderstood chronic illness. This thesis presented the first qualitative study of parent-child dyadic experiences living with POTS. Clinical implications for medical family therapy were highlighted. To construct an interview framework, Rolland's Family Systems-Illness (FSI) clinical model for helping families cope with illness and disability was used in conjunction with Arnett's description of emerging adulthood as a developmental stage in life. Seven parent-child dyads were interviewed for 1-2 hours in fourteen separate interviews generating transcripts about 140,000 words long in total. Analysis of these interviews identified shared themes composing the essence of the parent-child experience living with POTS during emerging adulthood. Results were described through tables and narratives. Clinical implications for family therapists working with parents and children with POTS during emerging adulthood were proposed. Limitations and ideas for future studies were discussed.

本研究旨在探討智能障礙者雙老家庭之照顧負荷、家庭復原力與家庭生活品質的關係，並檢驗家庭復原力對照顧負荷與家庭生活品質之調節情形。 本研究採取問卷調查法，採便利取樣方式進行資料蒐集工作，研究對象為79戶雙老家庭。資料分析以t考驗、單因子變異數分析、皮爾森積差相關分析與階層迴歸分析進行。研究主要結果如下： 一、雙老家庭的照顧負荷程度高，然家庭復原力及家庭生活品質的現況表現也普遍較高； 二、照顧負荷與家庭復原力具有顯著負相關； 三、照顧負荷與家庭生活品質具有顯著的負相關； 四、家庭復原力與家庭生活品質具有顯著的正相關； 五、家庭復原力可調節照顧負荷對家庭生活品質之負向效果。 本研究根據問卷調查結果，提出實務與後續研究之建議。 / The purpose of this study was to probe into the relations between care burden, family resilience and family quality of life of the double-ageing families that contain old parents and their children with intellectual disability, and to examine the moderating effects of the family resilience of care burden and the family quality of life. A questionnaire survey was used in the study which recruited 79 double-ageing families. The data of questionnaire survey were analyzed by t-test, one-way ANOVA, Pearson product-moment analysis, and hierarchical regression analysis. The results of the study were described as the followings： 1.Care burden of caregiver is in high-level；Family resilience and family quality of life levels of double-ageing families are positive, between mid-level and high-level. 2.There was significant negative correlation between care burden and family resilience. 3.There was significant negative correlation between care burden and family quality of life. 4.There was significant positive correlation between family resilience and family quality of life. 5.The family resilience moderated the negative effects of the family quality of life caused from care burden. Based on the results from the questionnaire survey, some suggestions for practice and future studies were proposed.