Rose Steele

Supportive care needs of women with gynecologic cancer.

Gynecologic cancers often place a heavy emotional and physical burden on patients. However, there is a lack of information about the types of supportive care needs that these patients have, the services that are available, and whether patients want help with their needs. The aims of this cross-sectional, descriptive study were to (1) identify the supportive care needs (physical, emotional, social, spiritual, psychological, informational, and practical) of women with gynecologic cancer who attended a comprehensive, outpatient cancer center in Ontario, Canada, and (2) determine if patients wanted assistance in meeting those needs. A total of 103 patients participated in this study by completing a self-report questionnaire. Sixty-five of the women were no longer on treatment at the time of completing the survey. Eight of the top 10 most frequently reported needs were nonphysical, such as fears about the cancer returning or spreading. The data indicated that a range of needs remained unmet for this patient group. However, identifying the presence of a need did not necessarily mean that a patient wanted to have assistance with the need. Suggestions for practice and future research are offered to assist healthcare professionals in providing care to these patients.

Initial development and psychometric testing of an instrument to measure the quality of children's end-of-life care.

BackgroundThe field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care.MethodsThe study purpose was to develop and test an instrument to measure mothers’ perspectives on the quality of care received before, at the time of, and following a child’s death. In Phase 1, key components of quality end-of-life care for children were synthesized through a comprehensive review of research literature. These key components were validated in Phase 2 and then extended through focus groups with bereaved parents. In Phase 3, items were developed to assess structures, processes, and outcomes of quality end-of-life care then tested for content and face validity with health professionals. Cognitive testing was conducted through interviews with bereaved parents. In Phase 4, bereaved mothers were recruited through 10 children’s hospitals/hospices in Canada to complete the instrument, and psychometric testing was conducted.ResultsFollowing review of 67 manuscripts and 3 focus groups with 10 parents, 141 items were initially developed. The overall content validity index for these items was 0.84 as rated by 7 health professionals. Based on feedback from health professionals and cognitive testing with 6 parents, a 144-item instrument was finalized for further testing. In Phase 4, 128 mothers completed the instrument, 31 of whom completed it twice. Test-retest reliability, internal consistency, and construct validity were demonstrated for six subscales: Connect With Families, Involve Parents, Share Information With Parents, Share Information Among Health Professionals, Support Parents, and Provide Care at Death. Additional items with content validity were grouped in four domains: Support the Child, Support Siblings, Provide Bereavement Follow-up, and Structures of Care. Forty-eight items were deleted through psychometric testing, leaving a 95-item instrument.ConclusionsThere is good initial evidence for the reliability and validity of this new quality of end-of-life care instrument as a mechanism for evaluative feedback to health professionals, health systems, and policy makers to improve children’s end-of-life care.

Why patients with lung cancer do not want help with some needs

GoalThe purpose of this exploratory study was to understand what motivates patients to ask or not ask for assistance when they have expressed need in specific areas.Materials and methodsA qualitative approach was used to explore the desire for assistance of patients with lung cancer who attended a regional cancer centre. The research questions were: (1) Why do patients with lung cancer not desire help for certain areas of need?; (2) What resources currently exist outside the cancer centre that patients with lung cancer use to help meet their needs?; and (3) What resources (internal and external to the cancer centre) would be helpful for patients with lung cancer? Fifty-nine patients participated in this study by completing a self-report questionnaire; 34 of these patients were then interviewed using a semi-structured interview guide.Main resultsThe data indicated varied reasons for not asking for help, such as believing that staff were too busy or the problem would go away over time. Participants identified a number of outside resources they currently used and gave suggestions about needed resources within the cancer centre and in the community.ConclusionsPatients with lung cancer may have a number of supportive care concerns, but they do not always ask for help with those issues. Some patients may be unaware of possible help, and others may not want help from professionals. Supportive care needs must be identified quickly and effectively so that appropriate interventions can be offered to those who want them.

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.

Parental Perceptions of Forgoing Artificial Nutrition and Hydration During End-of-Life Care

BACKGROUND AND OBJECTIVE: Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under specific circumstances. However, most of the evidence on FANH involves dying adults. There is a paucity of pediatric evidence to guide health care providers’ and parents’ decision-making around this practice. Objectives were (1) to explore the experiences of bereaved parents when a decision had been made to FANH during EOL care for their child and (2) to describe the perceived quality of death in these children, as reported by their parents. METHODS: This was a qualitative study using in-depth interviews with parents whose children died after a decision to FANH. Parental perceptions about the experience and their child’s quality of death were explored. Interviews were audiotaped and transcribed, then data were analyzed by using interpretive description methodology. RESULTS: All parents were satisfied with their decision to FANH and believed that their child’s death was generally peaceful and comfortable. The child’s perceived poor quality of life was central to the decision to FANH, with feeding intolerance often contributing to this perception. Despite overall satisfaction, all parents had doubts and questions about the decision and benefited from ongoing assurances from the clinical team. CONCLUSIONS: FANH in children at the EOL is an acceptable form of palliation for some parents and may contribute to a death that is perceived to be peaceful and comfortable. In situations in which FANH may be a reasonable possibility, physicians should be prepared to introduce the option.

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.

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.

Exploring the Supportive Care Model as a Framework for Pediatric Palliative Care

The fit between the Supportive Care Model and existing research on parent perspectives about pediatric palliative care was explored following a review of the literature. An electronic search of Medline and CINAHL from 2004 to January 2009 resulted in 49 articles on 38 studies that sought parent perspectives on care provided by health professionals during palliation, end of life, and/or bereavement. Results were synthesized according to the dimensions of the Supportive Care Model. The model fit well with the research, indicating that the highest quality pediatric palliative care occurred when there was a fundamental valuing of the child and family, when individual human connections were made and continued throughout and following illness and death, when families felt empowered, when some aspects of care were performed for families, when families were supported in their search for meaning in their situation, and when the integrity of each individual and the family as a whole was preserved. The research also suggests that careful assessment of individual family preferences within each dimension is crucial. The model is proposed as a helpful guide for clinical practice with dying children and their families.

Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: Charting the Territory

BackgroundChildren with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the condition progresses along an uncertain trajectory towards death. Much is known about the genetics and pathophysiology of these diseases, but very little has been documented about the trajectory of symptoms for children with these conditions or the associated experience of their families. A longitudinal study design will help to close this gap in knowledge.Methods/DesignCharting the Territory is a longitudinal descriptive, correlational study currently underway with children 0-19 years who are diagnosed with progressive neurological, metabolic, or chromosomal conditions and their families. The purpose of the study is to determine and document the clinical progression of the condition and the associated bio-psychosocial-spiritual experiences of the parents and siblings age 7-18 years. Approximately 300 families, both newly diagnosed children and those with established conditions, are being recruited in six Canadian cities. Children and their families are being followed for a minimum of 18 months, depending on when they enroll in the study. Family data collection will continue after the childs death if the child dies during the study period. Data collection includes monthly parental assessment of the childs symptoms; an annual functional assessment of the child; and completion of established instruments every 6 months by parents to assess family functioning, marital satisfaction, health status, anxiety, depression, stress, burden, grief, spirituality, and growth, and by siblings to assess coping and health. Impact of participation on parents is assessed after 1 year and at the end of the study. Chart reviews are conducted at enrollment and at the conclusion of the study or at the time of the childs death.DiscussionKnowledge developed from this study will provide some of the first-ever detailed descriptions of the clinical symptom trajectory of these non-curable progressive conditions and the bio-psychosocial-spiritual aspects for families, from diagnosis through bereavement. Information about developing and implementing this study may be useful to other researchers who are interested in designing a longitudinal study.

Always With Me: Understanding Experiences of Bereaved Children Whose Baby Sibling Died

An arts-based qualitative method was used to explore the experiences of childrens bereavement after a baby siblings death, in the context of their family and school life. Data were collected during in-depth interviews with 9 bereaved children and 5 parents from 4 Canadian families and analyzed. A central process, evolving sibling relationship over the years, and a pattern of vulnerability/resilience, ran through all four themes, which reflected ideas of connection, impact of parental grief, disenfranchisement and growth. Findings indicated that home and school are critical to children in creating safe spaces for expressing the evolving nature of infant sibling bereavement.