Quality of Life among Compound Caregivers and Noncompound Caregivers of Adults with Autism

ABSTRACT

Children diagnosed with autism spectrum disorder (ASD) are reaching adulthood and require some form of lifelong care. Many parents continue caring for their adult children with ASD for as long as physically possible. As parents age, many also may provide care for another loved one, such a spouse or parent. This study compares compound (those providing care for multiple loved ones) and noncompound parental caregivers (those providing care solely for an adult child with ASD) on six dimensions of quality of life (enjoys life, life is meaningful, ability to concentrate, accepts bodily appearance, satisfied with self, and frequency of negative feelings). Specifically, this study determined the extent to which compound and noncompound caregivers’ quality of life differed. The present study included 320 parents (age 50 or older) of adult children (18 or older) diagnosed with ASD who completed a web-based survey. T-tests for independent samples compared the six dimensions and overall quality of life between compound and noncompound caregivers. Results indicated that compound caregivers were less able to concentrate and had fewer negative feelings than noncompound caregivers. Further research is needed to determine the effects of caregiving on the multidimensional aspects of quality of life.     

Haudenosaunee Grandmothers Caring for their Grandchildren: The Process of Assuming the Caregiving Role

The purpose of this grounded theory study was to understand the processes, motivations, and reasons for Aboriginal grandmothers assuming the full-time caregiving role for their grandchildren. Fifteen Haudenosaunee grandmothers who were from the Six Nations community participated in this study. The results indicate that a series of complex factors, circumstances, and processes contributed to them caring for their grandchildren. Of particular significance is that, prior to assuming their full-time caregiving roles, they had intermittently cared for their grandchildren as a means of preventing family breakdown. Many of them were accustomed to this type of care arrangement as over half of the grandmothers had been cared for by their grandmothers or great-mothers. Ultimately, they cared for their grandchildren as a means of “keeping the state’s hands off” their grandchildren and avoiding child welfare involvement. Furthermore, the women in this study served as important vital roles for healing in Aboriginal families and communities.     

Measuring Family Caregiver Perceptions of Support in Caring for Children and Youth With Mental Health Concerns

ABSTRACT

This correlational study assessed how families of children with mental illness perceived the levels of support they received from informal and formal resource providers and the associations between perceived support and child outcomes. Adult caregivers (N = 904) of youth receiving public mental health care services were administered the Family Caregiver Perceptions of Support Scale developed by the authors to assess family caregiver perceptions of support prior to and at termination of services. Factor analysis identified three types of caregiver anticipated supports: informal support resources, support for treatment plan influence, and health care resources. The domains were significantly and positively associated with one another but did not uniformly correlate with youth mental health outcomes. The study provides preliminary evidence that treatment gains in youth mental health outcomes are observed when caregivers perceive support in treatment processes. Suggestions for future research are made, stressing the importance of caregivers and providers working together and describing needs related to future scale improvements.     

Parental Suicidal Ideation and Child Depressive Symptoms: The Roles of Optimism and Gratitude

Abstract

This study aimed to compare the influence of paternal and maternal suicidal ideation on child depressive symptoms and examine the moderating effects of children’s positive psychological traits: optimism and gratitude. A cross-sectional survey with 302 children and parents from five primary schools in Hong Kong were recruited. Results indicated that maternal suicidal ideation was significantly related to child depressive symptoms while paternal suicidal ideation was not. Moreover, the moderating effects of child optimism and gratitude were shown in the link between paternal suicidal ideation and children depressive symptoms. In contrast, the influencing power of maternal suicidal ideation of maternal suicidal ideation seems too strong to be attenuated by child optimism and gratitude. Findings of this study implicate the importance of prevention and intervention to suicidal parents and their offspring. Besides, positive psychology programs to enhance child optimism and gratitude might promote child resilience in the face of parental suicidal ideation. Future research is suggested to include other risk factors and protective factors that might be involved in the complex pathway from parental suicidal ideation to their children’s depression, and to collect data from multiple informants of a longitudinal representative sample.     

A Support Group for Caregivers of Children with Craniofacial Differences

ABSTRACT

Caregivers of children with craniofacial differences (CFD) experience psychosocial stressors; however, few groups are described for this population. The authors outline an eight-session group and qualitative analysis of caregivers’ experiences. The majority of participants (n = 100) were mothers (76%) of children who were female (75%) and identified as Latino (79%). Children’s mean age was 10.6 (SD = 2.8) years, and they were born with cleft lip/palate (56%) along with other CFD diagnoses. Themes included: group appreciation (21%), mutual acceptance (18%), coping (18%), parenting skills (17%), learning (9%), resiliency (7%), empathy (4%), diagnosis information (3%), and self-care (3%). Caregivers’ reported experiences largely corresponded with group goals.     

Empathic Action and Family Resilience: A Narrative Examination of the Benefits of Helping Others

ABSTRACT

Empathy is identified as a protective factor that has been helpful for children considered at high risk for poor mental health and social functioning due to experiencing stressful circumstances such as family violence, substance abuse of a parent, or poverty. Yet, little is known about its relevance to a family's ability to overcome adversity. This study examined the narratives of 20 resilient families who maintained family functioning despite experiencing a multitude of risk factors including poverty, death of a child, significant health problems, or substance abuse problems. Narrative analysis was used to identify the ways families situated empathic actions within their stories of resilience. Findings suggest families developed increased compassion for others as a result of their own experiences with loss, trauma, or stress and discussed how helping others increased their ability to cope with the challenges they faced. Future research and practice implications are outlined and support the usefulness of strengths-based concepts and interventions.     

The association of caregivers’ and children’s characteristics with children’s social preference and being a class leader in China

Children’s social status in China includes both informal (e.g., social preference) and formal (e.g., class leader) statuses. This study examines the associations among caregivers’ characteristics, children’s characteristics, children’s social preference, and being a class leader by using multiple sources of information (caregiver reports, self‐ratings, sociometric methods, and achievement data). The participants were 1,926 fourth‐ to ninth‐ graders (M_age = 12.7; 49.7% males) and their primary caregivers. The caregivers’ characteristics were found to be related more closely to class leader than to social preference. Both higher children’s interpersonal character and academic achievement were associated with higher social preference and class leader; however, academic achievement showed stronger relationships with both types of status than interpersonal character. The children’s characteristics mediated the associations between caregivers’ characteristics and children’s social statuses. The grade difference test showed that interpersonal character had a stronger association with social preference, and academic achievement had a stronger association with class leader in secondary school than in primary school. The results suggest that children’s characteristics (especially academic achievement) are strongly related to Chinese children’s social preference and being a class leader. In addition, the potential role of caregivers’ characteristics and the influence of child age are noteworthy.     

Empowering Children Left Behind in China

In the last two decades in rural China, increasing numbers of children of economic migrants have been left behind with kin, which is of growing concern for social work and welfare policy. The genesis of this rural to urban migration has been China's rapid economic development and greater opportunities for work in better paying jobs in cities. However, there is growing evidence of the negative impact upon these children. This paper reports the views of caregivers (n = 23) and school personnel (n = 5) from a small town in Northeast China. Interviews sought adults opinions on these children's needs, with the major outcome being children's need to be empowered – to be respected, to express themselves, to have influence, and to be supported to be able to more fully participate in education and their communities. We argue that caregiver strategies to empower children left behind provide insight into culturally appropriate processes and practices that underpin social inclusion. However, some discrepancies between the views of caregivers and school personnel alert us to the potential for tension between family and broader community and institutional views. Implications for social work practice include responding to the cultural values embedded in child rearing practices and local ideas about children's entitlements.     

Chinese American Family Caregivers’ Perception of Program Use and Caregiver Stress

Caregiver programs provide specialized services and resources to reduce caregiver stress and improve family quality of life and health. Although there are resources and community services available, Chinese American family caregivers’ perceptions on caregiver programs and how specific services help to viably reduce their stress has yet to be examined. An in-depth interview was conducted with four Chinese American family caregivers in exploring their caregiving experiences and program service use; two of the caregivers were spouses and two were adult children. Content analysis revealed that their value of familial piety, and their need to ameliorate caregiver stress fueled their interest in new interventions to improve their quality of life and health. Spousal caregivers and adult children caregivers disclosed different needs due to caregiving, and adult children caregivers were less resistant to new interventions. The results of this study fill the knowledge gap on Chinese American family caregivers’ perception of caregiving in a cultural context as well as their needs. Suggestions for future research are to better understand the effectiveness of the specific services within caregiver programs that are effective in reducing caregiver stress among Chinese American family caregivers.     

The magic in the (extra)ordinary: Intensive validation to recalibrate the life-worlds of adolescents exposed to abuse

This qualitative case study aimed to explore environmental circumstances and interactional processes that appeared to be relevant for the dynamics of resilience in adolescents exposed to child abuse. Fieldwork at a learning and coping centre for children and their families was combined with semi-structured interviews with adolescent participants aged 12 to 18 years. A critical realist approach was used to unpack what has been called the ‘ordinary magic’ of resilience. We found that intensively validating qualities of both the environment and relationships seemed to be driving components for resilience. Borrowing ideas from the sociometer theory, we propose that particularly the consistent intensiveness may offer a recalibration of the adolescents' immediate life-worlds, in terms of how they perceive the people they meet and the environments they step into. In keeping with the transactional-ecological model of resilience, we suggest that such a recalibration leads to altered social agency that becomes visible through their immediate social participation.     

African-American Grandmother Carers of Children with Disabilities

Abstract

Estimates are that one in ten grandparents will take on the role of primary carer to a grandchild for at least six months before the child is age 18, including a child with a developmental delay or disability. This article reviews the current literature on grandparent caregiving with particular attention to African-American grandmother carers and discusses stressors and reports of elevated symptoms of depression among them. The demographics of a sample of 145 African-American grandmothers of children with a developmental disability are reported here as well as the result of a logistic regression analysis of a model of predictors of elevated (above a score of 16 on the CES-D) symptoms of depression. Being younger than age 60, not working outside of the home, not being married, and having no further than secondary school education, were all found to be significant predictors of elevated symptoms of depression in this sample of African-American grandmothers. Interventions for this group of carers must take into account their potential for depression and health problems, economic circumstances, and lack of knowledge of financial and other assistive resources.     

Meditation Program Enhances Self-efficacy and Resilience of Home-based Caregivers of Older Adults with Alzheimer’s: A Five-year Follow-up Study in Two South Asian Cities

This article reports a five-year follow-up study in two South Asian cities on the impact of a long-term meditation program in enhancing self-efficacy and resilience of home-based caregivers of older adults with Alzheimer’s. Intervention group caregivers (pre-test N = 96; post-test N = 78) reported lower perceived caregiving burden, higher self-efficacy in obtaining respite, responding to disruptive patient behaviors and controlling upsetting thoughts, and greater resilience, post-test, in comparison to the control group (pre-test N = 89; post-test N = 67). Gender and relationship with the patient were two strong moderators determining program impact. Caregiver women, spouses, Hindus, middle class, with college and higher education, homemakers, who attended at least 75% of the meditation lessons and regularly practiced at home (i.e. once weekly for at least 75% of the weeks) reported lower post-test perceived caregiving burden, higher self-efficacy, and resilience. Results of the Tobit regression models confirmed the meditation-related moderators and indicated that home practice was the strongest predictor of post-test scores. Overall the meditation program is an effective intervention, however, would need to be refined for specific caregiver subgroups such as men, children and children-in-law and those working outside the home, to suit their realities.     

Grandchildren Caring for Grandparents: Modeling the Complexity of Family Caregiving

ABSTRACT

This study focuses on grandchildren (Generation 3 or G3) caring for grandparents (Generation 1 or G1) and uses agent-based modeling to conceptualize and test a model of two factors—capability and motivation—that may affect a G3's decision to provide care for a G1. We tested our conceptual model and found that the simulated proportion of G3 caregivers has concurrent validity with existing empirical data. In experiments conducted with the validated model, we investigated universal- and targeted-policy changes (tax credit for caregivers) and found that although the universal-policy change increased G3 caregiving overall, a policy change targeting low- and middle-income caregivers was even more successful.     

Toward Empowerment: ReVisioning Family Support Groups

ABSTRACT

Family support groups (FSG) have been recognized as an important and viable means for responding to the needs of family caregivers. How these groups work, however, is not well understood. The purpose of this qualitative exploratory study was to explore the impact of attending a family support group on the caregiving experience from the perspective of the family member. Personal, semi-structured interviews took place with eleven family members who had participated in at least one FSG. Data was analyzed for themes, using a constant comparative categorizing strategy. This analysis suggests that attending a FSG impacts the caregiving experience in four important ways: helping the family member to construct a self-identity as a ‘caregiver’; promoting a sense of personal competence; fostering the use of formal support groups; and creating a community context within which to experience the caregiving role. Cumulatively, these have the potential to contribute to a sense of empowerment for the family member by helping him or her to reposition the caregiving experience as more than a personal issue and promoting the emergence of a more collective voice.     

Adapting the Friends of the Children programme for child welfare system‐involved families

Research has shown the importance of long‐term, caring adults for children in foster care. This paper reviews the Friends of the Children (FOTC) long‐term mentoring programme and how it was adapted to serve children and families with child welfare system involvement. This study's two research questions are (1) How do Friends (FOTC's paid professional mentors) currently work with, and in turn, have an impact on, child welfare‐involved families? and (2) How can Friends better support child welfare system‐involved caregivers and families to promote family stability, permanence, and child well‐being? Data were collected from 21 caregivers (foster and biological), 24 FOTC Friends, five child welfare workers, and five teachers. Qualitative analyses of focus group, interview, and open‐ended survey data revealed a wide variety of ways Friends currently support children and families. In addition, several recommendations were made for strengthening programming. These findings provide valuable insights into providing long‐term mentoring to child welfare system‐involved children and families.     

Does Counting Count for 3‐ to 4‐year‐olds? Parental Assumptions about Preschool Children's Understanding of Counting and Cardinality

Research indicates that children do not typically understand the connection between counting and cardinality for several months after learning to count, yet parents speak to 3‐year‐olds as though they already understood the significance of counting. The present research was designed to investigate mothers’ awareness of the discrepancy between children's procedural and conceptual mastery of counting. In Study 1 mothers of a hundred 3‐ to 4¹/₂‐year‐olds completed an anonymous questionnaire asking them to anticipate how their child would respond to a series of real‐life vignettes based on widely used experimental measures of cardinal understanding. Most anticipated that their child, irrespective of age, would (1) understand the significance of the last word of a count, and (2) be able accurately to give a specified non‐subitizable number of objects. Comparison with the performance of 54 children from the same local population supported the hypothesis that parents overestimate children's understanding of the cardinal significance of counting. Mothers reported a range of impromptu number‐related activities in which their child had recently participated at home; most of these involved simple procedural counting. In Study 2, 35 mothers of 3‐ to 4¹/₂‐year‐olds completed a modified questionnaire concerning procedural aspects of counting as well as cardinality; their responses were then compared with the performance of their own children. Again, mothers overestimated their children's cardinal understanding, but this was shown not to be a result of a general tendency to overestimate their counting abilities. It is suggested that preschoolers’ counting generally occurs during joint activities in which caregivers may be unaware of the support that they provide, and, provided that the jointly executed count procedures are error‐free, parents implicitly assume a ‘common knowledge’ regarding the cardinal significance of counting.     

Children’s Participation in Child Protection Practice in Ghana: Practitioners’ Recommendations for Practice

Abstract

The United Nations Convention on the Rights of the Child (UNCRC) includes provisions to ensure that children and young people participate in decisions affecting their lives. Ghana ratified the convention in 1990 making a commitment to review its child protection policies and legislation in compliance with provisions in the UNCRC. Yet, national policies and legislation do not include practical guidelines to promote children’s participation in the child protection process. Thus, this qualitative study presents findings from in-depth interviews with 15 child protection practitioners on their views about some practical guidelines to promote children’s participation in child protection. Data from the interviews were subjected to constructivist grounded theory analysis. The study findings revealed the age of the child, separate room for children, creating a friendly environment and education as some important factors for practitioners to consider in promoting participatory practices for children. Child protection policies and legislation in Ghana should include these suggestions to ensure that children’s views are heard in the child protection process. To realize the overarching goal of achieving active child participation in child protection, further research may focus on the views of parents and children on how to develop culturally relevant strategies to promote child participation.     

Strengths of caregivers raising a child with foetal alcohol spectrum disorder

Birth, foster and adoptive parents raising a child with foetal alcohol spectrum disorder know their children best and are well positioned to inform professionals how to help alcohol‐affected children. Telephone interviews with 32 parents were conducted to explore strengths of caregivers raising a child with foetal alcohol spectrum disorder, and responses analyzed using concept mapping methodology. Four themes emerged from 74 unique responses: ‘change parenting strategy for different children’, ‘use non‐verbal, sensory and physical strategies’, ‘stay patient and understanding’ and ‘locate and maintain external supports’. Results were compared and contrasted with the existing literature. Although many responses were consistent with the literature, strengths previously unreported by caregivers in the literature included cultural practices, communication, generalizability of skills, soothing music and use of a service dog.     

Caregiver involvement in behavioural health services in the context of child welfare service referrals: a qualitative study

Human service agencies serve a growing number of adults with behavioural health needs. Despite these agencies' key role in identifying need and facilitating services, many individuals do not receive care or end services prematurely. Few studies have explored the experiences of families referred to behavioural health services by such agencies or the extent to which families' perceptions of service need align with those of treatment providers and frontline workers. This study presents findings from a qualitative study of caregivers involved with child welfare agencies who were referred to behavioural health services. Researchers reviewed agencies' case records and conducted in‐depth interviews with 16 caregivers, 9 child welfare caseworkers and 12 behavioural health treatment counsellors. Findings suggest that when deciding to engage in services, caregivers weigh not only their individual and family behavioural health needs but also potential agency intervention, including loss of child custody. Many professionals reported that involvement with a child welfare agency hindered the caregiver's disclosure of behavioural healthcare needs. Implications for managers and practitioners are discussed.