Parental spirituality in life-threatening pediatric cancer.

This study addressed parental spirituality in the context of pediatric cancer with a poor prognosis. Drawing upon previous research implementing a longitudinal grounded theory design examining parental hope, 35 parents were interviewed regarding their experiences with an emergent description of the role of spirituality in parents' daily lives. Spirituality included religious beliefs and practices, notions of a higher force or cosmos, relationship with a divine being, as well as elements emerging from meaning-making and relationships. Parental expectations of spirituality remained relatively constant across data collection time points (3-9 months postdiagnosis), although limited variation occurred relative to shifting circumstance (e.g., deterioration of the child's condition). Spirituality appeared to offer: greater acceptance of parents' inability to protect their child from harm related to her/his life-threatening illness, guidance and emotion decompression, and support from one's faith community. Recommendations for integrating spiritual assessment in clinical care practice are offered.

An innovative child CBT training model for community mental health practitioners in Ontario.

OBJECTIVE: Cognitive behavior therapy (CBT) for children has been shown efficacious, but community access to it is often limited by the lack of trained therapists. This study evaluated a child, CBT-focused, 20-session weekly group supervision seminar with a didactic component which was provided to community mental health practitioners by experienced CBT therapists from an academic center. METHODS: Twenty-two practitioners from four community mental health agencies completed the training in four groups (one for each agency); one group was trained by videoconference. The authors assessed outcomes immediately after the training and at 6-month follow-up using a mixed-method design including quantitative and qualitative methods to ensure a comprehensive evaluation. RESULTS: Participants' knowledge on a multiple-choice test of child CBT increased with training, as did their self-reported confidence using CBT and desire to do further child CBT. Therapist age and use of an intake diagnostic screen related to positive outcomes, and participants advocated for more structured training. CONCLUSION: Child CBT can be successfully taught to community practitioners using this training model, but refinement based on participant feedback and further studies that include direct observation of CBT skills are needed.

The many layers of social support: capturing the voices of young people with spina bifida and their parents.

Young people with physical disabilities experience greater difficulty than their able-bodied peers in many psychosocial domains as they transition toward adulthood. However, firsthand knowledge of the dimensions of social support that young people with physical disabilities find useful during this stage is lacking. This qualitative study involved 50 participants (21 youths with spina bifida and 29 parents) and focused on gaining an insider's perspective on the nature of social support. Building on the work of LaGreca, themes were mapped into four broad support domains: tangible, information, companionship/belonging/mutuality, and emotional. This research indicates that parents provide substantial all-purpose support in each of the four domains. A second major finding shows that support from peers and friends follows a unique and varied path with distinctive characteristics related to the realities of living with a disability. Implications for social work practice with targeted populations and systems are considered.

Mothers raising children with sickle cell disease at the intersection of race, gender, and illness stigma.

This qualitative study used the long interview method with Canadian mothers of African and Caribbean descent to understand the underresearched experience of raising a child with sickle cell disease (SCD). Mothers' realities were explored through three levels of social organization: daily caregiver coping (micro level); community views of SCD, such as stigma (meso level); and systemic SCD health care provision (macro level). Through the use of population health and structural social work perspectives, mothers' experiences were examined in the context of perceived gender and racial oppression. Saturation was achieved after initial interviews with 10 participants and a four-month postinterview with half of the participants. Mothers commonly reported several daily coping challenges: fear of their children's death, separation anxiety, loss of control over life, helplessness, and loneliness/isolation. SCD stigma interacted with racism, contributed to social isolation, and prevented families from organizing as a group. All mothers perceived racism as a salient factor behind inadequate mainstream SCD health care. Recommendations to improve SCD health care and implications for social work practice and research are discussed. This is the first known Canadian psychosocial study of SCD and investigation into SCD stigma outside of rural Nigeria.

Assessing the informational needs of adolescents with a genetic condition: what do they want to know?

Adolescence is a period of challenges that can be more stressful for someone with a genetic condition. The purpose of this descriptive pilot study was to assess the informational needs of adolescents with a genetic condition. To our knowledge, this is the first study that has attempted to identify these needs. A convenience sample of adolescents between 12-19 years of age with either phenylketonuria or congenital adrenal hyperplasia and who had not previously received genetic counseling was recruited. Recruitment ended once the themes were saturated (n=17). A twenty item open/close-ended questionnaire was used to assess participants' knowledge of their genetic condition, what they wanted to know about their condition and in what manner. Almost all of the adolescents knew the name and genetic basis of their condition while most were aware of the risk of recurrence in a future pregnancy. Parents and doctors respectively, were identified as the primary and secondary sources of genetic information. Despite their evolving independence, almost all of the participants favoured receiving medical information with their parents present. The majority of participants felt that patients should begin receiving genetic information before the age of 12 years. Thematic analysis revealed that adolescents wanted to understand the science behind their condition, how their condition affects them, and how to manage it. The results highlight (i) the importance that adolescents place on parental involvement in their medical care (ii) that adolescents would like information about the genetics of their condition at a much younger age than when they usually receive genetic counseling and (iii) the benefits that can be gained by this patient population from receiving genetic counseling.

A critical appraisal of literature reviews about the transition to adulthood for youth with disabilities.

A critical appraisal of five review articles on the transition to adulthood for youth with disabilities was conducted to identify evidence about (1) the factors that help or hinder the transition process, and (2) "what's working" in transition services. The appraisal identified a number of important "success" factors and elements of service delivery that are worthy of consideration by service providers and researchers. These include the need for skill development of youth with disabilities, environmental supports, and an individualized approach to service delivery. All of the reviews identified the need for more evidence to support the implementation and evaluation of best practice models/approaches that address the complex issue of the transition from paediatric to adult services for youth with disabilities.

Using stimulant medication for children with ADHD: what do parents say? A brief report.

INTRODUCTION: Long-term adherence to stimulant treatment for Attention Deficit Hyperactivity Disorder (ADHD) is frequently poor. Since parents are the key decision makers regarding their child's health care, their thoughts regarding medication use are crucial to whether children take prescribed stimulants. To develop an understanding of what parents think about using stimulants to treat their children's ADHD symptoms we consulted groups of parents about their experiences. METHODS: Using qualitative methods informed by phenomenology, three focus groups of parents were asked to describe their experiences parenting a child with ADHD and using stimulant medications for treatment. Participants were 17 mothers and fathers of 14 children with ADHD, ages 7-14 years, who had received detailed diagnostic assessments and had used stimulants. Focus group dialogue was recorded and transcribed. Using established methods of data analysis, themes were identified and explored. RESULTS: Accepting that one's child has ADHD and needs treatment is a difficult and lengthy process, often accompanied by confusion and self-doubt. Parents find the choice to use stimulant treatment particularly challenging given the conflicting opinions they hear from family, friends and professionals. CONCLUSIONS: Universally, parents want to do what is best for their child. Adverse effects, concerns about stigmatization, and the child's dislike of taking pills, all contribute to parents' decisions to discontinue medication even when the child shows symptomatic benefit.

Factors associated with self-worth in young people with physical disabilities.

Having a positive sense of self is associated with success for children and adults, with and without disabilities. This article reports on a cross-sectional study examining the correlates of global self-worth for 85 young people (ages eight to 23) with spina bifida (a condition present at birth) or spinal cord injury (an acquired condition). Significant correlations were found between perceptions of self-worth and age, perceived social support of close friends, and perceived social support from parents. Regression analysis revealed that perceived social support from parents was a stronger predictor of self-worth than gender, age, or diagnosis (onset of disability). Implications of this study for social work practice are discussed.

Wearing masks in a pediatric hospital: developing practical guidelines.

During the outbreak of Severe Acute Respiratory Syndrome (SARS) in the spring of 2003, strict infection control measures were implemented in Toronto and surrounding hospitals. These measures included extreme restrictions on those who would normally accompany patients to the hospital, screening for SARS, and protective attire for hospital staff, including masks, face shields, goggles, gloves and gowns. At Toronto's Hospital for Sick Children (HSC), patients could only be accompanied or visited by one person, often only in patients' rooms. For the first four weeks, patients and their designated parent had to wear masks in almost all areas of the hospital. Staff wore masks (and other appropriate protective clothing) whenever in contact with patients and in many patient care areas. Although these barriers were an important part of containing SARS, their use created significant challenges for patients and staff. This article focusses on the use of infection control masks in routine pediatric healthcare and the tools developed by HSC staff to reduce the negative psychosocial impact on children and families.

Beyond individual rights and freedoms: metaethics in social work research.

Increasingly, social workers are called on to demonstrate the efficacy of their interventions and to contribute to knowledge building in the social sciences. Although social workers have a long tradition of practice ethics, less attention has been given to the unique dimensions of research ethics for social workers. A social work model of research ethics would consider how to balance highly valued ethical principles that are individually focused, such as self-determination and nonmalfeasance (the obligation to do no harm), with equally important values that have a collective focus, such as justice and beneficence (the obligation to bring about good). This article reviews current principles guiding research ethics, such as autonomy, beneficence, nonmalfeasance, and justice and provides an outline of the salient issues for social workers as they strive to address individual and collective interests in research endeavors, such as a greater emphasis on the social justice mission and the need to ensure that social justice objectives do not obscure individual rights and freedoms. The article concludes with preliminary recommendations for developing a social work perspective in research ethics.