Background: Individuals with intellectual and/or developmental disabilities (IDD) are experiencing longer life expectancies with the majority requiring the ongoing support of family caregivers into adulthood. Medicaid is the primary funding source for supports and services for adults with IDD. Growing Medicaid expenditures and goals to improve quality of care are driving more states to move their Medicaid fee-for-service programs into a managed care model. The stated goals of Medicaid managed long-term services and supports (MLTSS) are to improve care coordination and access to care while controlling costs, but the evidence regarding these outcomes is limited and mixed. Given the level of uncertainty about MLTSS for adults with IDD and their family caregivers, best practices recommendations have been produced by the federal government and advocacy agencies to help guide future MLTSS implementation efforts. These best practice recommendations combined with the continued expansion of MLTSS in the states, provided an opportunity to further explore implementation of MLTSS to inform both policy and practice. One state which recently reformed their Medicaid program to MLTSS and which has been referred to as a bellwether state is Kansas. The MLTSS program in Kansas, titled “KanCare”, is the first for adults with IDD to integrate across health, behavioral health, and LTSS while also contracting through three private-for-profit managed care organizations (MCOs). Aims: The objective of this study was to describe the current implementation of MLTSS for adults with IDD and their family caregivers in one state, Kansas. Study aims were as follows: 1) To understand the rationale behind and what actually happened with MLTSS implementation for adults with IDD in Kansas; 2) To understand how service coordination providers and family caregivers perceived care coordination and access to services for adults with IDD in MLTSS; 3) To understand how family caregivers and their roles were recognized in MLTSS for adults with IDD. Methods: A single case embedded design case study approach was used with in-depth semi-structured interviews completed with state/regional level representatives (N=13), MLTSS service coordination providers (N=7), and family caregivers of adults with IDD (N=11). Data collection and analysis were guided by the unified theory of family quality of life (FQOL) and Bronfenbrenner’s ecological model. The framework method was used to structure the data analysis process. Member checking was completed to ensure accuracy of results. Findings: Regarding aim one, respondents identified reducing costs and improving care quality as the rationale behind MLTSS, but these were outcomes not yet realized given the early stages of implementation. At the time of this study, the Managed Care Organizations (MCOs) were continuing to work on expanding provider networks and to provide additional services to address health disparities amongst individuals with IDD. Study participants identified the importance of adequate planning and stakeholder engagement to reduce confusion and fear when transitioning into MLTSS. Addressing aim two, timely and accessible consumer education, clear care coordination processes, and provider network adequacy were identified as important to influence the challenges experienced to date in care coordination and access to services. Regarding aim three, participants acknowledged the important role of family caregivers. At the current stage of the KanCare implementation, participants reported lack of formal processes for family caregiver assessment and a need for more proactive family support services planning. Conclusion: Lessons learned from this implementation experience include the importance of having long planning timelines and including stakeholder feedback into the design of MLTSS programs. Care coordination holds promise to better integrate care, but more research is needed to understand best practices for the provision of care coordination in MLTSS. In order to address access to services, MLTSS programs will need to work and build provider capacity and provider networks. MLTSS programs will also need to formally recognize the role of family caregivers by incorporating the use of family caregiver assessments to proactively plan for support needs.

This paper aims to examine caregiver responses to children's utterances and how the caregiver's responding speech varies during the child's three critical years of language development. The methodology of this paper is a longitudinal study that focuses on how the caregiver uses the language during the child's first three and most important language-wise years. The data comprised three video recordings downloaded from the CHILDES database. The process of analyzing the caregiver's language was then based on Lieven's (1978) semantic categories. These results demonstrated the importance of the caregiver in L1 development.

Effective communication is an important concern when working with individuals with hearing loss. This concern is apparent in the long-term elder care setting, where caregivers communicate with older adult patients every day, many of whom have hearing loss. However, there is limited training available to these caregivers working with residents with hearing loss. The purpose of this project is to establish the need and context for the development of an educational program for caregivers working with these residents with hearing loss. A total of 38 caregivers employed by three elder care facilities in Tucson, Arizona were surveyed. Results from this survey demonstrated that caregiver respondents felt they are knowledgeable and comfortable working with residents with hearing loss. However, there was an apparent gap as caregivers also reported that the presence of hearing loss among residents makes their jobs more difficult and stressful. Furthermore, they reported feeling that hearing loss impacts communication with residents and negatively effects the quality of care. Based on the findings of this survey, there is a need identified for educational opportunities for caregivers working with residents with hearing loss. The findings from this survey provide a foundation for the establishment of hearing health continuing education programs for caregivers working in long term elder care facilities. Specific recommendations regarding potential content of training programs are offered based on the survey findings. Implementation of caregiver trainings may ultimately lead to improved caregiver-resident communication and positively impact the quality of life for residents with hearing loss.

Magister Artium (Psychology) - MA(Psych) / The effects of risky sexual behaviour (RSB) amongst adolescents are devastating in South Africa. Recent studies show that parent-child (PC) communication about RSB is associated with positive outcomes such as delayed sexual debut and increased autonomy among adolescents. There are however challenges on how to define caregivers within the South African context due the historical background of South Africa such as Apartheid and labour migration. For the purposes of this study, caregivers would be regarded as individuals who the have sole responsibility of caring for a child. The aim of this study was to explore caregiver-child communication in relation to RSB to gain an in-depth and contextualized understanding of how South African families interact, feel and experience their communication and the challenges they face, it therefore uses a qualitative approach. These aims translate into the following objectives a) exploring the process of communication i.e. how they communicate in terms of style, content, timing and frequency b) exploring the experiences of communication of RSB for both caregivers and children in terms of their thoughts and feelings as well as the challenges faced. Conducting focus group discussions and individual interviews was the method of data collection. Four focus groups (two focus groups with male adolescents and two focus groups with female adolescents) were conducted as well as three individual interviews with caregivers a total of 23 participants were used. Both groups of participants are of mixed racial backgrounds and from the Northern sub district of Cape Town. The data was analyzed by using thematic analysis. All ethical principles were adhered to. This study found mothers to be an influential source of sexual communication with their children and this communication hinged more on the health risks of early sexual debut and negative social outcomes. Caregivers highlight the barriers to communication with their adolescents which create caregiver anxiety and avoidance of sexual communication. School has also been identified as highly influential to both caregivers and adolescents especially with regards to the biological and physiological aspects of sex education. Two types ‘educational systems’ have been identified within the South African context. The impact of these systems on the quality of education and nature of the resources provided to both caregivers and learners are discussed in relation to sexual education and communication. The community and extended family of the participants are very involved in the socialisation of the adolescents in this study and often assist caregivers. Caregiver monitoring is the most utilized strategy used to ensure that adolescent whereabouts and activities are known at all times. Possible interventions such as additional strategies for caregivers to consider and communication workshops for caregivers and educators are discussed. The limitations of this study such as the limited amount of caregivers interviewed and the lack of male caregiver insight were identified and recommendations for future studies are provided.

Magister Artium (Social Work) - MA(SW) / Caregivers of people with psychiatric illnesses experience challenges, which contribute significantly to their burden of care and can result in health and mental health problems. The researcher was interested in the lived experiences of caregivers, which resulted in the following research questions: What are the lived experiences of caregivers caring for a co-morbid bi-polar and substance-abuse patient, and what context and situations contribute to the problems? The goal of this research was to explore the experiences of family members caring for relatives admitted in a psychiatric hospital, and the contexts in which these occurred. The objectives were to explore and describe the lived experiences of family members caring for a relative with a co-morbid diagnosis of bi-polar and substance abuse, as well as the situations or contexts in which these experiences occur. These objectives were followed by the last objective of the research, which was to make recommendations to the multi-disciplinary teams (MDTs) on services for family members caring for such a relative. A qualitative, phenomenological research approach was used for this study with explorative and descriptive research designs. The population for the study comprised families in the Western Cape caring for female relatives admitted to a psychiatric hospital with co-morbid bipolar and substance use disorder. The researcher purposively selected relatives of female in-patients admitted in a female admission ward. Families were chosen whose members were admitted for more than three months. In-depth phenomenological interviews were done with six participants until data saturation was reached. Phenomenological data analysis, focusing on the textural (lived experience) and structural (context in which it was experienced), were followed after data collection. Findings comprised a composite description of the phenomena of both textural and structural description. The findings of this research resulted in conclusions and recommendations for MDTs and social work on interventions for family members caring for a family member with this mental condition. Findings from this study conclude what was found in the literature regarding challenges in the system leads to caregivers feeling burdened with their mentally ill relative, and that resources and support are lacking in communities. This led to recommendations aiming at MDTs, government and social workers working in institutions, to align with community social workers in order to strengthen working relationships with the aim of providing the necessary support services to families caring for mentally ill relatives. Future research suggestions are also aimed at supporting families caring for patients with a mental illness for which reasons for re-admissions will be assessed and evaluated.

Hematopoietic stem cell transplant (HSCT) is a demanding cancer treatment for HSCT recipients and their caregivers. The thesis objectives were to (a) critically review the literature evaluating the psychosocial impact of being a caregiver to a HSCT patient; (b) evaluate a conceptual framework to examine the individual and dyadic experience of HSCT patients and their caregivers; and (c) gain a better understanding of how couples navigate the HSCT. Study 1 was a comprehensive literature review that demonstrated that caregiver distress is highest pre-HSCT and predictors of caregiver distress include female gender, elevated subjective burden, and higher patient symptom distress. This study also highlighted the need for theoretically driven research that examines reciprocal relationships between HSCT dyads. Study 2 proposed a conceptual model based on equity theory to examine the individual and dyadic experience of HSCT dyads that includes feelings of inequity, patient self-perceived burden (SPB), caregiver burden and distress. A cohort study with 72 HSCT patient-spousal caregiver dyads was conducted pre-HSCT. Questionnaire data was subjected to path analysis. Consistent with the model, pre-HSCT caregiver burden mediated the relationship between caregiver underbenefit and caregiver distress. Patient overbenefit was related to patient SPB, patient distress, and caregiver burden. Overall, the theoretical framework appeared to describe patient and caregivers individual experience of distress pre-HSCT, but did not as clearly encompass the dyadic experience of distress. Study 3 was a qualitative study of patient-caregiver dyads to gain insight on how some successfully navigate, whereas others have difficulties. One year post-HSCT five patient-caregiver dyads were interviewed separately (N =10). Five themes emerged. While all couples adopted patient and caregiver roles, four demonstrated effective adaptation whereas one couple experienced difficulties. Ongoing physical limitations, lack of mutual empathy and relational awareness, limited social support, and poor communication were associated with difficulty adjusting to the HSCT. This thesis provides a greater appreciation of the psychosocial challenges the patients and caregivers are experiencing and highlights that the experience of HSCT recipients and caregivers is unique and intertwined. Importantly, this thesis identifies current knowledge gaps in care of HSCT dyad, discusses its clinical implications and suggests avenues for future research.

This thesis investigated the longitudinal role of defeat and entrapment in populations where these factors were expected to be particularly relevant (a sample of individuals from areas of socioeconomic deprivation and a sample of formal caregivers). The thesis then considered whether defeat and entrapment influenced reward sensitivity on a gambling task and lastly, designed a short scale measuring defeat and entrapment suitable for use in clinical populations. The research incorporated a review of the literature, two longitudinal studies, a behavioural study and the development of a scale. The literature review presented in Chapter 1 provided evidence of a well-established link between defeat, entrapment and poor mental health, suggesting that defeat and entrapment may act as a transdiagnostic process; contributing to the development and maintenance of a range of mental disorders. However, the review also demonstrated that defeat and entrapment relate to the same experiences, suggesting that logically these constructs may equally co-occur, although the structure of the constructs is currently debated. The studies presented in Chapters 3 and 4 demonstrated that perceptions of defeat and entrapment predicted poor mental health (depression and anxiety, and depression and caregiver burden) at a second time point, 12 months later. These chapters presented the first longitudinal evidence for samples recruited from the general population and occupational settings. Furthermore, these chapters provided evidence that the relationship between defeat, entrapment and poor mental health operates in a bidirectional way within a sample recruited from community settings, but a linear way within a sample of formal caregivers, suggesting that further research is needed to confirm the direction of this relationship. The research presented in Chapter 5 found a non-significant relationship between defeat and entrapment and reward sensitivity among a sample of undergraduate students. This may have arisen due to the generally low levels of defeat and entrapment within the sample despite highly varied performance on the task. Replication of this research within a sample where a wider range of defeat and entrapment experiences would be expected might be beneficial. Additionally, this thesis aimed to confirm the factor structure of defeat and entrapment amongst various populations. Exploratory and confirmatory factor analysis demonstrated that defeat and entrapment are best conceptualised as a single psychological construct (Chapters 3 and 6), supporting one-factor theories of defeat and entrapment (e.g. Taylor et al., 2011a). During the course of conducting research for this thesis, it became apparent that the length of existing scales used to measure defeat and entrapment were not suitable for use with clinical populations. Despite evidence that defeat and entrapment may reduce symptoms of mental health problems, their measurement has not yet translated to clinical practice. Although several reasons underlie this, a lack of short measurement tool is a major factor. To address this, an eight-item scale was developed, which demonstrated good psychometric properties across four samples from clinical and non-clinical settings. The current research was supported by a discussion of the clinical implications of the work, specifically identifying how defeat and entrapment could be implemented within therapeutic interventions for mental health problems. The current thesis represents a significant contribution to original research considering defeat and entrapment as predictors of mental health problems. The thesis presents the first longitudinal evidence that defeat and entrapment impact on mental health problems for individuals recruited from community and occupational settings and first application of defeat and entrapment to a behavioural task. Through development of a short scale, the thesis also presents a potential avenue to increase the measurement of defeat and entrapment in clinical settings.

BACKGROUND: Children who are exposed to war are at great risk of suffering mental health and developmental problems. The care children receive from parents during and after conflict is highly important, acting as a significant protective factor. The stress and difficulties of war and displacement, often leaves parents unable to give children the care they need. By supporting families through the use of parent interventions, it may be possible to weaken the link between war and displacement, and psychological difficulties in children. AIMS: The present project had two main aims. Firstly, to examine the parenting needs and challenges of refugee families living in preresettlement contexts. Secondly, to test the feasibility of disseminating parenting information to families living in conflict zones. The project took place in Syria and Turkey with families that had experienced the conflict in Syria. METHOD: First, a systematic review was carried out to explore previous evaluations of parenting programmes in preresettlement contexts. Then, a qualitative study was carried out exploring the parenting challenges and needs of refugee families, and the coping strategies parents utilised in caring for their children in preresettlement contexts. Thematic analysis was carried out to identify key issues from the data, and parental experiences. The final study tested the feasibility of large-scale distribution of parenting information leaflets and feedback questionnaires in a conflict zone in Syria. Descriptive statistics were used to explore the sample characteristics of the respondents and t-tests were utilised to examine the usefulness of the parenting leaflet. In addition, a content analysis methodology was used to code respondent comments that had been written on feedback questionnaires. CONCLUSION: The current available evidence base on parenting interventions in preresettlement contexts is poor. However, very soon after the immediate extreme stress of displacement, parents are very keen to access information on how best to parent their children. It may be possible to design and deliver interventions for parents in this context based on theoretical parenting principles and identified needs, to inform holistic interventions and culturally appropriate policy responses. The successful delivery of parenting information to families in a conflict zone demonstrates the scope for using existing humanitarian supply routes, both to distribute information and to receive feedback directly from recipients, even in high risk settings. Further research is required to investigate the efficacy and effectiveness of such an intervention in practice.

With three homogenous caregiver groups (i.e., Alzheimer's caregivers, grandparents raising grandchildren, parents), caregiving styles were explored to determine their reliability and validity, their unique role in predicting caregiver outcomes, and their differences between groups of caregivers. A conceptual framework was adapted to determine the impact of contextual variables, caregiving styles, caregiver appraisal, and mediating variables on caregiving outcomes. A more concise version of the Caregiving Style Scale (CSS) was developed with 49 items yielding an internal consistency coefficient of .74. As expected, three caregiving styles emerged and were positively related to the parallel parenting styles. Across the caregiver samples, there were positive relationships among caregiving style dimensions within the same caregiving style, while those from opposing caregiving styles tended to have negative relationships indicating good convergent and discriminant validity. Authoritative caregiving style dimensions were generally associated with healthier functioning, while authoritarian and permissive caregiving style dimensions were correlated with less healthy functioning. Caregiving style dimensions were among the predictors of several outcome measures, highlighting the importance of their placement in the conceptual framework for caregiver stress and coping. Generally, an unexpected finding was that authoritative caregiving style dimensions tended to predict less adaptive caregiving outcomes, particularly for parents and grandparents, while the impact upon caregiver well-being by authoritarian caregiving style dimensions varied throughout the caregiver groups. Results further indicated that different groups of caregivers tend to take on different caregiving styles, with grandparents and parents tending to differ significantly from Alzheimer's caregivers in their approaches to caregiving.

The purpose of this study was to examine the effect of participation in music therapy support groups (MTSG) on physical, psychological, and social functioning of cancer patients and caregivers. Participants were 24 cancer patients and 17 caregivers randomly assigned to experimental (n=21) or wait-list control (n=20) groups. The primary dependent variables were mood, coping, social support, and quality of life as measured by the Profile of Mood States (POMS), State Trait Anxiety Inventory-State (STAI-S) and Trait (STAI-T) scales, Personal Resource Questionnaire 85-Part 2 (PRQ85-Part 2), and Functional Assessment of Cancer Therapy-General Form (FACT-G). These measures, completed by all participants at baseline, midpoint, and end of three weeks, assessed the long-term effect (three weeks) of MTSG participation. The Music Therapy Support Group Numerical Rating Scales (MTSG-NRS) evaluated the short-term effect of each 60-minute music therapy session on mood, pain, stress, anxiety, and quality of life. All participants also completed the Music Therapy Support Group Assessment Form (MTSG-AF) beforehand to provide demographic information and music preferences, and the Music Therapy Support Group Evaluation Questionnaire (MTSG-EQ) after participation in music therapy sessions. Experimental participants completed six MTSG sessions over a three-week period; interventions included singing, songwriting, playing instruments, movement with music, creative arts with music, and music-assisted relaxation. The data from the POMS, STAI-S, STAI-T, PRQ85-Part 2, and FACT-G questionnaires were analyzed using five individual repeated measures ANOVA. The MTSG experimental group showed a significant improvement in mood and a significant decrease in anxiety as a result of participation in the music therapy support groups; the control group showed no significant change over time. The MTSG also showed improvement, though non-significant, on social support and quality of life; the control group remained stable on these measures over time. Data from the MTSG-NRS were analyzed using a Wilcoxon Rank Sum test. Analyses revealed that the MTSG achieved significant improvement in mood and significant decrease in stress and anxiety throughout each 60-minute MTSG session. Participation also significantly decreased the perception of pain and significantly improved quality of life in four of six sessions.