This study investigated the relationship between compound caregiving (i.e. multiple caregiving roles), and reciprocity to the wellbeing of older caregivers of adult children with intellectual disabilities. The study sample was composed of 91 caregivers with a mean age of 60 years. Participants were a convenience sample of caregivers predominantly residing in Florida. Care recipients' mean age was 29 years. Thirty-four were currently compound caregivers. Quality of life indicators used as outcome measures in this dissertation were life satisfaction, depressive symptomatology, physical health, mental health, and desire for alternative residential placement of the care recipient. Compared with the non-compound caregivers, the compound caregivers had increased desire to place their care recipient into residential care. They also spent an average of 12 additional hours per week undertaking the compound caregiving role. Between group differences were not detected in life satisfaction, depressive symptomatology, global physical health, or mental health. The role of reciprocity was investigated using tangible reciprocity (i.e. help with home chores), and emotional reciprocity (i.e. positive emotions). Overall findings indicated that caregivers reported giving more tangible and emotional support than they received, but considerable variability was evident. Relative disadvantage in tangible reciprocity was associated with increased depressive symptomatology, poorer mental health, and reduced desire for residential placement of the care recipient, but not with physical health or life satisfaction. Emotional reciprocity was not associated with any of the outcome measures. Tangible reciprocity and compound caregiving were assessed using hierarchical regression analyses, to investigate their predictive value, after controlling for caregiver demographic variables, care recipient characteristics, and caregiving stressor variables, for mental health, depressive symptomatology, and desire for residential placement. Compound caregiving status was found to predict greater desire for placement over and above the control variables. Tangible reciprocity did not explain any significant variance in any of the regressions. Overall, compound caregivers are more likely to desire residential placement for their care recipient, though no discernable difference existed between compound versus non-compound caregivers in the other outcome measures. Tangible reciprocity had little predictive utility in the present study. Compound caregiving research needs further refinement of more homogeneous groupings of compound caregivers.

No description available.

Caring for children with cancer involves caring for the entire family. Treatment for childhood cancer is centralized in major centres. A phenomenological study was conducted to elicit the lived experience of parents caring for a child who had completed treatment for cancer who do not live near their child’s cancer treatment centre. Interviews with five parents exploring their recollections of parenting their child with cancer during and after treatment were conducted. Data analysis revealed the essence of the parents’ lived experience as a journey within a journey. Four themes characterized the essence of parents’ lived experience: (1) travelling for care, (2) learning to navigate their journey with healthcare providers, (3) coping with change, and (4) giving back. Similarities and differences between the findings from this study and other studies of families with childhood cancer are presented. Recommendations relating to nursing practice, education, research and healthcare policy are provided.

Research shows the way adults communicate with children can be classified into two main categories: Adult Directed Speech (ADS) and Infant Directed speech (IDS) (Schachner & Hannon, 2011). Past research focused on the maternal use of IDS; however, the current study investigated differences in maternal and paternal use of IDS. We hypothesize that 1) there will be a difference in the amount of paternal caregiving depending on mothers’ work status, 2) the acoustic properties of IDS will be influenced by the amount of parental involvement in caregiving activities, and 3) infants will pay more attention to parents who use more exaggerated IDS. No changes were found for paternal involvement when mothers were employed compared to when mothers were not employed. No relationships were found between IDS, parental involvement, or infants’ attention. These findings provide a better understanding of fathers’ contributions in caregiving and their influences on infants’ cognitive development.

Caring for children with cancer involves caring for the entire family. Treatment for childhood cancer is centralized in major centres. A phenomenological study was conducted to elicit the lived experience of parents caring for a child who had completed treatment for cancer who do not live near their child’s cancer treatment centre. Interviews with five parents exploring their recollections of parenting their child with cancer during and after treatment were conducted. Data analysis revealed the essence of the parents’ lived experience as a journey within a journey. Four themes characterized the essence of parents’ lived experience: (1) travelling for care, (2) learning to navigate their journey with healthcare providers, (3) coping with change, and (4) giving back. Similarities and differences between the findings from this study and other studies of families with childhood cancer are presented. Recommendations relating to nursing practice, education, research and healthcare policy are provided.

This study focuses on parental future planning for adults with intellectual disabilities. In recent years, the need for parents to engage in future planning for their offspring with intellectual disabilities has been increasingly emphasized. Within the literature, a number of approaches to future planning have been identified, including both formalized approaches (i.e., creating clear, explicit, and largely unchanging plans for the future of the individual with an intellectual disability) and more informal approaches (i.e., designating a person or a group of people to oversee the well-being of the individual with an intellectual disability without necessarily providing specific guidelines relating to the individual’s future care). Despite growing understanding that parents may approach developing future plans in different ways, to date, research on future planning has largely been focused on exploring formalized, concrete approaches to future planning. Using an Interpretive Description methodology, in which semi-structured interviews were conducted with 28 parents of adults with intellectual disabilities, this study sought to gain a greater understanding of parental future planning in real life practice in the province of British Columbia. Results revealed that while the parents in this study often utilized several future planning approaches -- both formal and informal -- when engaged in planning, they could be classified into two broad categories: Concrete Planners and Informal Planners. In addition, the results of this study also highlight key factors that may distinguish between parents who plan more formally and parents who plan more informally. Overall, these result highlight important avenues for future research and policy and practice; which, ultimately, may lead to important changes regarding how best to support aging parents of adult children with intellectual disabilities as they face the challenging task of planning for the post-parental care phase of their adult child’s life. / Graduate / megan.caines@gmail.com

Abstract This study seeks to explore mental representations of caregiving, an area of attachment that has been the subject of relatively little research. The Caregiving Styles Questionnaire (CSQ) was developed as a cost effective and efficient alternative to lengthier caregiving interviews, and this study examines its internal and external validity. An initial item critique was used to examine underlying constructs of the measure. Exploratory factor analysis revealed a three factor structure, which was replicated in a subsequent EFA using a data set that differed primarily in the age of the target child. The three factors included (1) Relationship uncertainty, (2) Needy uncertainty, and (3) Rejecting representations of caregiving. Each of these scales had high reliability, and the results reflected existing caregiving representations that have been theorized in previous studies. These findings, particularly the generalizability of the measure across age groups, indicate that it would be worthwhile to continue refining the CSQ items in order to provide a valid measure of an understudied behavioral system.

abstract: Family caregivers are a quickly growing population in American society and are potentially vulnerable to a number of risks to well-being. High stress and little support can combine to cause difficulties in personal and professional relationships, physical health, and emotional health. Siblings are, however, a possible source of protection for the at-risk caregiver. This study examines the relational and health outcomes of gratitude exchange between caregivers and their siblings as they attend to the issue of caring for aging parents. Dyadic data was collected through an online survey and was analyzed using a series of Actor-Partner Interdependence Models. Intimacy and care conflict both closely relate to gratitude exchange, but the most significant variable influencing gratitude was role. Specifically, caregivers are neither experiencing nor expressing gratitude on the same level as their siblings. Expressed gratitude did not relate strongly or consistently to well-being variables, though it did relate to diminished negative affect. Implications for theory, the caregiver, the sibling, the elder, the practitioner, and the researcher are addressed in the discussion. / Dissertation/Thesis / Ph.D. Communication 2014

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.

Caregivers for individuals diagnosed with Alzheimer's disease (AD) shoulder a remarkably complex burden as compared to other caregivers of elderly individuals. For long distance caregivers, geographical separation further compounds the problems experienced by AD caregivers, as they are isolated from family members and support networks. Both on-site and long-distance AD caregivers experience uncertainty; the findings from this study illustrate how AD caregivers manage the uncertainty of the disease and primary care, as well as how uncertainty differs between on-site and long-distance caregivers. AD caregiver (N = 13) interviews were transcribed and qualitatively analyzed using uncertainty management theory as a thematic lens. The analysis revealed that AD caregivers experience overwhelming feelings of burden, guilt, and doubt; however, these feelings manifest differently depending on caregiver type. The findings of this study demonstrate that sources for obtaining information regarding AD and caregiving were useful for on-site caregivers; however, the sources did not account for the needs of long-distance caregivers or the psychosocial needs of on-site caregivers. Furthermore, AD caregivers did not seek support or information about AD and caregiving from health care professionals. Implications for future research regarding long-distance and on-site AD caregiving are discussed.