Parental Caregivers' Desires for Lifetime Assistance Planning for Future Supports for Their Children with Intellectual and Developmental Disabilities

Future life planning is a growing concern among families with children with disabilities. This article presents a needs assessment evaluating feasibility of a new model for future life planning for family caregivers, Lifetime Assistance, which will provide ongoing planning and monitoring for individuals with intellectual and developmental disabilities. Using surveys informed by a series of focus groups, data were gathered from older and younger parents in one midwestern state regarding the potential program. Study results indicate that respondents did not feel the current system of support was adequate for planning for their child's future, nor sufficient for monitoring the quality of life for their children in the future. Although almost all families had identified a person to support their family members when they were no longer able to do so, parental caregivers overwhelmingly identified the need for the Lifetime Assistance program and many were willing to pay for this service themselves.     

The Needs of Gender-Variant Children and Their Parents: A Parent Survey

ABSTRACT

Parents of children with gender-variant behavior, while doing their best to handle their child's preferences and needs, are forced to contend with societal bias and assumptions that allow their children to be marginalized. This exploratory investigation aims to provide a basis for supporting all children with gender variance and their parents by identifying their needs. An Internet survey was designed to elicit the experiences of parents with gender-variant children to identify the needs of both parents and children. Data were analyzed using content analysis to establish the major themes. The dominant identified needs for parents were related to finding correct information and obtaining professional support, parenting strategies, and peer support. The children's primary needs were related to discussing their feelings, being accepted, and being supported to express their gender preference.     

Meeting the needs of adolescents living with HIV through home based care: Lessons learned from Tanzania

PurposeHome based care is central to HIV care and support throughout Africa. Most programs have not addressed the unique needs of adolescents living with HIV, who display lower retention in HIV care and treatment adherence. This study examined the experiences of adolescents living with HIV in Tanzania in order to identify ways to improve home based care to better meet their needs.MethodsWe conducted a qualitative study in Dar es Salaam and Tanga Region consisting of in-depth interviews with 14 adolescents living with HIV, 10 primary caregivers, and 12 providers assigned to their households. Interviews examined adolescents' experiences of growing up with HIV, perceptions of current home based care, and challenges in increasing acceptability of services.ResultsWe found the program did not align well with adolescents' expectations. Adolescents felt home based care to be more relevant to their caregivers and did not form independent relationships with providers. They expressed anxiety that participation might lead to inadvertent disclosure of their status and consequent discrimination. Both adolescents and their caregivers felt disappointment that no material or financial support was available despite widespread poverty, although they appreciated receiving psychosocial support and practical referrals. Providers demonstrated motivation to work with adolescents but acknowledged lacking requisite skills such as ways to communicate with young people and key messages to deliver.ConclusionsDespite challenges, we identified feasible adaptations to make home based care more adolescent-centered. These include actively engaging adolescents in program design, improving provider training in communication with adolescents, and proactively addressing unrealistic expectations. Finally, increasing referral links to a wider range of services could improve program effectiveness by integrating it into a broader development approach.     

Friendsourcing Peer Support for Alzheimer’s Caregivers Using Facebook Social Media

ABSTRACT

This research piloted an e-health intervention that used social media to friendsource peer support for Alzheimer’s disease (AD) caregivers. Friendsourcing is a variant of crowdsourcing. Crowdsourcing recruits online participants who share a characteristic that makes their volunteerism meaningful when they join to achieve an outcome. Friendsourcing recruits online participants who share membership in a social network that makes their volunteerism meaningful when they join to achieve an outcome. This article introduces our friendsourcing intervention research and examines the effects on the psychological well-being of AD caregivers. After a 6-week intervention, caregivers were found to have significantly decreased burden (Z?=??2.01, p?<?.05) and perceived stress (Z?=??2.95, p?<?.01). Emotional and informational support scores were significantly increased (Z?=??2.32, p?<?.05). Qualitative data analysis of the intervention identified positive effects in new caregiving knowledge acquisition and application and reduced stress in the acceptance of the caregiving role. Joining social networks in support groups through friendsourcing was feasible for AD caregivers who were familiar with social media, and can provide another means of guiding the development of their personal support networks.     

Peer support and food security in deaf college students

Abstract

Objective: The purpose of the study was to investigate whether peer support and demographic characteristics predicted food security among deaf college students. Participants: The sample included 166 deaf college students at Gallaudet University. Methods: Participants completed a bilingual online survey in American Sign Language (ASL) and English. This survey included USDA’s 6-item food security survey, questions about peer support and socio-demographic characteristics. Results: Out of 166 students (mean age =23; SD?=?6), 60.7% were food secure. About 26.4% were at-risk for low food security and another 12.9% had very low food security. The sample included respondents who identified as people of color (54%) and women (52%). Binary logistic regression revealed that compared to people who reported always receiving peer support, people who never received peer support were 16.3 times more likely to experience food insecurity (adj OR: 16.325, 95% CI 1.824–146.107). Conclusions: This study demonstrates a strong relationship between peer support and deaf college students' food security experiences.     

Psychological Functioning Through the First Six Months in Mothers Adopting from China: Special Needs Versus Non–Special Needs

ABSTRACT

This paper describes research investigating maternal adjustment to parenthood via special needs and non–special needs adoption from China. China's adoption system has a program for adoption of children with special needs and those without and both have remained top sources for intercountry adoption. Participants were 46 women who were surveyed at six weeks before, six weeks after, and six months after adopting a child. The psychological functioning of mothers adopting from China was assessed using the Beck Depression Index, the Brief Symptom Inventory, and the Edinburgh Postnatal Depression Scales. Mothers adopting children without special needs reported higher levels of depression, anxiety, and adjustment problems at clinical levels six weeks following the adoption. Mothers adopting children with special needs reported positive adjustment and low psychological dysfunction at all three time points. These results suggest that mothers pursuing a non–special needs adoption route are at greater risk for adjustment and psychological difficulties post-adoption. Mothers adopting special needs children may be better prepared prior to the adoption and may receive more support after returning home.     

A Pseudofolliculitis Barbae Clinic for the Black Male who Has to Shave

Abstract

We conducted focus group interviews with students who were current peer health educators at a mid-sized university to determine what factors motivate individuals to volunteer for a peer health education program. Specifically, we asked the participants questions designed to explore their life experiences, their expectations of the peer education program, and their motivations. Constructs from social learning theory were used to categorize and contribute to our understanding of the responses. Many participants specified experiences with family members or friends, such as alcoholism or other illnesses, that had influenced their decisions. Participants' expectation of the program varied greatly and did not indicate a strong link to the decision to volunteer. The peer health educators' motivations for volunteering were altruistic, such as wanting to help others; egoistic, such as wanting job training; or related to self-efficacy beliefs, such as satisfying a personal need for health education. This study indicated that life experiences, a belief in the effectiveness of peer health education programs, and positive reinforcement to join influence the decision to volunteer. Implications for coordinating peer education programs are discussed.     

Internet-Based Clinical Services: Virtual Support Groups for Family Caregivers

ABSTRACT

Objectives: An internet-based psychotherapeutic support group intervention for family caregivers of persons with neurodegenerative diseases was developed in a series of pilot studies and subsequently evaluated in a feasibility study with 34 participants. The aim was to duplicate online group interactions typical of face-to-face support groups. Methods: A user-friendly web site was developed according to usability criteria for older adult users. Unique features of the web site included video conferencing in two formats, one-on-one and a group format with up to 6 participants and a facilitator. Following ten professionally facilitated sessions, each group evolved into a web-based self-help support group facilitated online by a group member. Results: Qualitative analyses of early, middle and late group video conferencing sessions yielded themes congruent with face-to-face group process. Follow up interviews six months following the initiation of the online groups showed overall positive participant responses in each of the following areas: learning to use computers, negotiating the web site links, obtaining disease-specific information from the website, using technology to communicate, bonding with group members, providing mutual guidance and support, and benefiting in terms of coping with the stresses of caregiving.     

Knowledge and Behavioral Impact of Adult Participation in Child Sexual Abuse Prevention: Evaluation of the Protecting God’s Children Program

ABSTRACT

This article presents findings from an evaluation of a popular adult training program (Protecting God’s Children) used in Catholic institutions, including schools, churches, and social service agencies. The study explores knowledge and behavior change based on pretest/posttest questionnaires administered to over 500 adults and follow-up questionnaires sent six months after the training. The participants in the training were compared to a control group of adults who did not participate in the program. The results indicate that participants arrive at the training with fairly high rates of preexisting knowledge but that the program increases knowledge across demographic groups. Follow-up surveys suggest that the new knowledge is retained over six months. The study indicates that the program is associated with an increase in participants talking to their own children about child sexual abuse. Participants also report sharing information with other adults and monitoring behavior around children more closely.     

Mutual help without borders? Plurality and heterogeneity of online mutual help practices for people with long-term chronic conditions

Online mutual help experiences may represent an opportunity for people with long-term chronic (LTC) conditions and their caregivers. However, there are very few accounts of or research on online practices of mutual support about such issues. On the other hand, the growth of online experiences of mutual aid has been extensive in recent decades. These experiences have been conventionally classified under the notion of ‘online support groups’. However, the notion of group seems to be reductive for the variety of forms, meanings and implications of such experiences. On the basis of these assumptions, our paper aims at: a) describing the main differences between traditional forms of mutual help and online mutual help; b) identifying the emerging forms of online mutual help experience, emphasizing their distinctive features; c) tracing the potential connections between different experiences and people, practitioners and institutions. We identify three main types of online mutual help experience: groups, communities and extemporary practices. We then analyze the value they can have for LTC people, caregivers, practitioners and institutions, emphasizing their heterogeneity. Finally we discuss the overall evolution of the mutual help phenomenon, considering its transition to an online dimension.     

Differentiating Characteristics and Needs of Minority Grandparent Caregivers

Abstract

Data collected over a three-year period compared two groups of African American grandparent caregivers with a group of European American grandparents who were raising their grandchildren. Gender, marital status, and household income differentiated minority from nonminority participants. Statistically significant differences among certain of the demographic variables between the two groups of African American grandparents were also found. Practical implications of the results for research and practice are discussed through illustrating differences in advocacy needs and agenda-making between two grandparent caregiver support groups.     

A qualitative data analysis: family victim advocates in child advocacy centers

ABSTRACT

Family victim advocates in child advocacy centers provide a valuable resource to children and parents involved in child abuse investigations. This work requires that family victim advocates be knowledgeable in such areas as child development, crisis intervention, community resources, family relationships, child welfare and criminal justice systems. Because family victim advocates provide essential services to parents and caregivers, the role requires ongoing training and education to remain current on the ever-changing complexities of working with not only the children and families but also the criminal and child protection systems responsible for investigating these cases. The current study reports the findings from a nationwide survey of family victim advocates employed in child advocacy centers related to their motivation for doing the work as well as their perceptions of their training and potential training needs. A group of doctoral students comprised the research team and worked collaboratively under the supervision of university faculty to conduct the qualitative data analysis. The findings describe the characteristics and motivations of family victim advocates working in child advocacy centers and emphasize the need for more advanced trainings that focus on skill-building and strengths-based practices utilized to support children and parents in child abuse cases.     

Process evaluation of a preschool physical activity intervention using web-based delivery

Background and purposePreschool/childcare settings offer a practical target for physical activity interventions. Online learning programs have the potential for greater public health reach and impact. The SHAPES-Dissemination (SHAPES-D) project adapted the original SHAPES in-person intervention for online delivery to teachers. The purpose of this paper is to describe the implementation monitoring and process evaluation for the SHAPES-D project.MethodsNine preschools with 26 classrooms participated. A total of 41 teachers were trained via online learning to implement the SHAPES-D program in their classrooms. The dose received, completeness, and fidelity of implementation were assessed through website metrics, teacher surveys and interviews, and classroom observations.ResultsDose received was adequate (73%). Observed completeness and physical activity enjoyment fidelity were high (100%), although moderate-to-vigorous physical activity fidelity and social environment fidelity were low (25% each). Overall implementation was high (91%).DiscussionResults indicate that the online method of delivery is viable for dissemination. The online delivery system provides an easy method of monitoring dose received. This may be the first structural intervention to monitor dose received through web metrics.ConclusionThe adaptation of an in-person intervention to an online delivery system increases the potential for dissemination of a successful program to increase physical activity in preschool settings.     

Preparing parents for children with special needs: A three-part approach

This paper describes a community-based educative-small group method for working with prospective foster and adoptive parents. As an educational approach, the program prepares applicants to be substitute parents. The small group process method provides the applicants with an atmosphere conducive to discussing fears and frustrations while gaining peer and professional support. Community-centeredness not only allows the agency to recruit much-needed minority parents, but to make a contribution to the community in the form of prevention of problems through availability and education. Evaluation of the program demonstrates that the combined communitybased, small group approach is an effective and efficient method for “screening-in” foster and adoptive parents for children with special needs.     

Children of adult consumers of mental health services: Towards principles of practice

Abstract

This paper discusses the development of a peer support and advocacy Network, Young Mothers for Young Women. The Network evolved through a participatory action research project into young mothers experiences of violence. Through the Network, young women participate in a community development approach to violence reduction. As part of the Network, young women offer peer support to other young women. Network members also engage in ongoing community education and advocacy about issues, such as poverty, isolation and sexism which increase young womens vulnerability to violence. An important aim of this paper is to make visible the dialogue between social workers and young women on which the Network relies. This paper is motivated by the concern that as social work enters an era of increasing accountability it is critical that workers articulate the often invisible role they play in facilitating participatory processes.     

The Expansion of the Peer Adviser Workforce: Opportunities and Challenges for Social Work

ABSTRACT

Peer adviser roles are becoming an increasingly common—and celebrated—aspect of agencies where social workers are located. This article reports on a qualitative research study exploring the experiences of staff within a homelessness outreach service in which three peer advisers (people with a lived experience of homelessness) commenced employment. Drawing on action research principles, the study explored the experiences of the peer advisers and the broader team following the introduction of the peer adviser roles. Themes identified include, realising the skills of peer advisers, defining the role, taking a “whole of team” approach, and reflecting on power. This study demonstrates that the introduction of peer adviser roles into human service organisations is a promising strategy for creating services that are more likely to respond effectively to the needs of service users. However, social workers need to be aware of the pitfalls of tokenism and the devaluing of experiential knowledge.

IMPLICATIONS

• Peer advisers in health and welfare agencies add significant benefits to an agency’s capacity to respond to the needs of service users.

• The introduction of the peer workforce is aligned to social work values of service user empowerment and the valuing of experiential knowledge.

• In order to avoid tokenism, the introduction of peer adviser roles should be supported by both the attitudes and actions of other staff members, as well as organisational support structures.

     

Using a logic model to evaluate the Kids Together early education inclusion program for children with disabilities and additional needs

Despite clear evidence that learning and social opportunities for children with disabilities and special needs are more effective in inclusive not segregated settings, there are few known effective inclusion programs available to children with disabilities, their families or teachers in the early years within Australia. The Kids Together program was developed to support children with disabilities/additional needs aged 0–8 years attending mainstream early learning environments. Using a key worker transdisciplinary team model, the program aligns with the individualised package approach of the National Disability Insurance Scheme (NDIS).AimThis paper reports on the use of a logic model to underpin the process, outcomes and impact evaluation of the Kids Together program.MethodsThe research team worked across 15 Early Childhood Education and Care (ECEC) centres and in home and community settings. A realist evaluation using mixed methods was undertaken to understand what works, for whom and in what contexts. The development of a logic model provided a structured way to explore how the program was implemented and achieved short, medium and long term outcomes within a complex community setting.Discussion and conclusionKids Together was shown to be a highly effective and innovative model for supporting the inclusion of children with disabilities/additional needs in a range of environments central for early childhood learning and development. The use of a logic model provided a visual representation of the Kids Together model and its component parts and enabled a theory of change to be inferred, showing how a coordinated and collaborative approached can work across multiple environments.     

Mothers and deployment: Understanding the experiences and support needs of deploying mothers of children birth to five

ABSTRACT

Military deployments can demand long separations of service members and their families. The strain of separation is particularly acute for mothers of very young children. This study aimed to better understand the deployment and reintegration experiences of service members who are mothers of young children. Focus groups and interviews were conducted with 12 service member mothers who deployed to Iraq and/or Afghanistan when one or more of their children was younger than age 6. Discussions explored experiences before, during, and after deployment; needs and challenges at each stage; available support resources and gaps in support. Thematic data analysis was conducted, drawing on principles of grounded theory. Disruption and continuity were central themes as participants illuminated the challenges they faced and their profound dedication to sustaining strong family relationships across the deployment cycle. Relinquishing, reassuming, and balancing multiple roles and responsibilities are additional themes that were frequently evoked. Participants noted a lack of formal resources responsive to their needs and circumstances and highlighted a need for services tailored to mothers who are deploying. Military mothers, particularly mothers of young children, face distinct challenges surrounding deployment. Better understanding their experiences and support needs can inform tailored services to meet their needs.