Susan Cadell

Creating social work competencies for practice in hospice palliative care

Social workers play an important role in the delivery of Hospice Palliative Care in many diverse settings. The profession brings a unique perspective to end-of-life care that reflects and supports the holistic philosophy of Hospice Palliative Care. Despite the prominent and longstanding position of social work in this area, the role and functions of social workers had not been clearly defined. A Canadian task group of social work practitioners and educators utilized a modified Delphi process to consult front line clinicians nationally, and thereby achieved consensus regarding the identification and description of eleven core competencies in Hospice Palliative Care. These competencies are relevant for social workers at different experience levels across care settings. They can be used to inform social work practice, as well as professional development and educational curricula in this area.

Managing stigma in adolescent HIV: silence, secrets and sanctioned spaces.

HIV is conceived as a disease that combines stigma elements of perceived contagion and socially undesirable behaviours. Drawing on in-depth interviews with professional adolescent service providers from Australia, Canada, the UK and the USA, this paper explores HIV stigma and stigma management in the lives of HIV-positive young people. Findings elucidate how additional layers of stigma relating to ‘adolescent rights’ and ‘embodied innocence’ are added to HIV stigma as it is more usually conceived. This study suggests that managing this stigma entails managing silence in the context of the social worlds of the young person, the family and the service provider. Silence emerged as a key theme in the participant narratives and was embedded in the descriptions of young peoples lived experiences. Crucially, silence is a product of oppression and inequity but is also a tool for resistance. Silence defends secrets and exists in the spaces, both physical and social, that are created for them in order to manage the stigma in young peoples lives. Silences associated with HIV therefore need to be exposed if we are to better understand what HIV truly means to seropositive young people and how ‘silences’ may minimise or exacerbate their experience of HIV stigma inside and outside the context of programmes.

Gender imbalance in pediatric palliative care research samples.

We assessed the sampling performance of research on parental perspectives in pediatric palliative care and examined if and how gender imbalance was treated. We undertook a systematic review of parental perspectives research in pediatric palliative care using MEDLINE, CINAHL, and PsycINFO. Study selection inclusion criteria were: (1) published between 1988 and 2008; (2) in English; (3) conducted in North America; (4) focused on parents of children aged 0—18 years who were expected to die or had died; (5) had ‘parent’ in the title; and (6) focused on parents’ experiences or on parents’ perspectives regarding the child’s illness/death. Keyword searches produced a list of 2103 studies, of which 45 met the criteria for inclusion. The ratio of mothers to fathers participating in the studies was examined. We found that there has been an increase in research on parental perspectives in pediatric palliative care over the last 5 years, but what constitutes ‘parental’ in this literature continues to be primarily ‘maternal’. Mothers constituted 75% of the overall sample of parents. In only four studies was the gender imbalance addressed as one of the limitations of the study. There is a growing interest in parental perspectives in pediatric palliative care, but the research does not equally reflect the experiences and needs of mothers and fathers. Gender can shape experiences of both parenthood and grief; balanced gender sampling and accurate analysis is essential for research on ‘parental perspectives’. Gender imbalance in research samples, designs, recruitment strategies, and data gathering methods must be addressed.

Death and grief on-line: Virtual memorialization and changing concepts of childhood death and parental bereavement on the Internet

Abstract ‘Virtual memorials’ intended to memorialize the lives of children imply significant shifts in the conceptualization of death, particularly for grieving parents. Created by parents in memory of their deceased children, on-line memorials constructed using templates reflect strong cultural beliefs about the nature of childhood deaths, grief and the development of a kind of digital afterlife. Virtual memorials create a new social value for the deceased, and shift death and bereavement from private into more public experiences. Building upon this work, we describe a kind of ‘on-line immortality’ created through virtual memorials where the virtual presence of the deceased in text and images, and practices intended to sustain a relationship with the deceased, can extend bereavement and the social lives of the dead indefinitely. While such memorials can offer solace, they also potentiate business opportunities for those hoping to create lasting customers. As such, they may also extend mourning indefinitely. This may be especially true for certain kinds of deeply problematic deaths, such as those of children.

Differences on Psychosocial Outcomes Between Male and Female Caregivers of Children With Life-Limiting Illnesses

This secondary analysis of data examined the psychosocial outcomes of meaning in caregiving, self-esteem, optimism, burden, depression, spirituality, and posttraumatic growth in 273 parents caring for children with life-limiting illnesses to (a) determine if there were gender differences and (b) identify gender-specific correlations among these outcomes. Findings suggest that significant gender differences exist. Women reported higher average scores compared with men for meaning in caregiving, depression, burden, and posttraumatic growth and lower average scores for optimism. Correlations also revealed some significant differences. Health care professionals need to be aware of gender differences and tailor their interventions appropriately.

Exploring the Helpfulness of Arts-Based Methods With Children Living in Foster Care

This article considers the usefulness of arts-based group therapy methods in working with traumatized children. Although traditional effective forms of trauma treatment are necessary for many traumatized children, the authors explore how for some children living in foster care arts-based methods offer an appropriate and helpful approach, conducive to posttraumatic growth, which may be more suited to their particular needs and circumstances. The research is qualitative and sought to develop a better understanding of the impact of arts-based methods on children in care. We discuss how arts-based and experiential methods can help children in care feel better about themselves and develop coping abilities without direct discussion and/or working through of their traumatic life events.

Power, Pathological Worldviews, and the Strengths Perspective in Social Work

This article takes up Blundos (2001) assertion in this journal that in order to practice from the strengths perspective, social workers need to alter their “frames.” Expanding on this assertion, we specify a particular frame that requires change: a pathological worldview. Examining the strengths perspective with regard to a Foucauldian analysis of power, we argue that to thoroughly implement the strengths perspective, we need to consider the dividing practices that allow us to maintain power and that reflect a pathological worldview. This article provides considerations for social work practice that will be of interest to practicing social workers and social work educators interested in continuing to develop their strengths-based practice.

Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model.

When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into adulthood and beyond. For those parents who have a child who is born with or is later diagnosed with a life-limiting illness, parents also become caregivers in ways that parents of predominantly well children do not. While the circumstances are undisputedly stressful, for some parents benefits can co-occur along with the negative outcomes. This article tests two structural equation models of possible factors that allow these parent caregivers to experience growth in the circumstances. The diagnosis and illness of a child in the context of pediatric palliative care is a very complex experience for parents. The stresses are numerous and life-changing and yet the parents in this research demonstrated growth as measured by the Post Traumatic Growth Inventory. It appears that particular personal resources reflected in personal well-being are a precursor to the process of positive meaning making, which then, in turn, contributes to growth. The path to posttraumatic growth is not a simple one, but this research contributes to further elucidating it.

Posttraumatic Growth and HIV Bereavement: Where Does it Start and When Does it End?

There is growing interest in researching posttraumatic growth and understanding how to enhance positive outcomes in trauma survivors. This study undertook a systematic exploration of the posttraumatic growth in bereaved caregivers of people with HIV/AIDS. Following a survey (n=174), in-depth interviews were conducted with 15 individuals. Quantitative and qualitative data are used to illustrate how those who had low scores of posttraumatic growth recounted positive outcomes. Methodological and clinical implications are explored.

Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions

Background Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis, yet, little is known about their patterns of symptoms and functional abilities. Aim To describe these childrens symptoms, as well as how the childrens condition affects them physically. Design Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, that followed 275 children and their families. Setting/participants Seven tertiary care childrens hospitals in Canada, 2 in the USA. Families were eligible based on the childs condition. A total of 275 children from 258 families participated. Results The 3 most common symptoms in these children were pain, sleep problems, and feeding difficulties; on average, they had 3.2 symptoms of concern. There was a pattern of under-reporting of childrens symptoms for clinicians compared with parents. Regardless of use of associated medications, pain, feeding and constipation symptoms were often frequent and distressing. Children with a G/J tube had a higher total number of symptoms, and respiratory problems, pain, feeding difficulties and constipation were more likely to occur. They also tended to have frequent and distressing symptoms, and to need extensive mobility modifications which, in turn, were associated with higher numbers of symptoms. Conclusions These children experience multiple symptoms that have been previously documented individually, but not collectively. Effective interventions are needed to reduce their symptom burden. Future longitudinal analyses will examine which disease-modifying interventions improve, or do not improve, symptom burden.