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40th Congress of the International Society of Paediatric Oncology (SIOP), Berlin, Germany, October, 2008
European Journal of Oncology Nursing 13 (2009) 60–63
Contents lists available at ScienceDirect
European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
40th Congress of the International Society of Paediatric Oncology (SIOP), Berlin, Germany, October, 2008 SELECTED ABSTRACTS Living With Childhood Cancer - Family Members’ Experiences and Needs Maria Bjo¨rk1, Berit Nordstro¨m1, Thomas Wiebe2, Inger Hallstro¨m3 1 Lund University, Department of Health Sciences, Lund, Sweden 2 Lund University Hospital, Department of Pediatrics, Lund, Sweden 3 Lund University, Department of Health Sciences, The Vårdal Institute, Lund, Sweden Purpose: The aim of the project was to elucidate the families’ lived experiences and needs during a child’s cancer trajectory and to describe how the disease and treatment influence individuals within the family and the family as a unit. Method: By means of interviews and observations seventeen families with a child under 12 and newly diagnosed with cancer were followed through and after the treatment. Parents, patients and siblings seven years or older were interviewed at the time of diagnosis, during treatment and after its completion. Patients younger than seven were observed during their initial hospitalization. Results: The families’ life world changed during their child’s cancer trajectory. The family became vulnerable as their fundamental feelings of security disappeared and life became more taxing. Worry became a factor in their lives but was reduced when they understood more about what was happening. However, especially parent’s worry, easily increased when new things occurred. There was a constant swing between disorder and control. Perspectives on life changed as family members tried to focus on enjoyment and positive events. They felt relieved and grateful when things were managed successfully. The parents became increasingly important to the children and family members learned the value of being close to each other. When the treatment was complete the families felt happy and relieved although they still experienced times of stress. They were also grateful for support from others and realized the need for a proper relationship with staff. This applied to patients, siblings and parents. However, parents felt more isolated from staff in times of stress, and in times of poor communication or discontinuity of the staff. Conclusion: The findings can deepen the understanding of what it is like being a family with a child undergoing cancer treatment.
Cancer Childhoods: Analysis of Data From an Ethnographic Study of Childhood Cancer in British Bangladeshi Children Paula Kelly1 1 Kings College London, Health care , London, United Kingdom Purpose: This study set out to investigate the impact of cancer on the experiences of childhood for British Bangladeshi children living in the United Kingdom. British Bangladeshi children represent a significant minority group whose cultural heritage may challenge underlying assumptions of biomedical paediatric cancer care. The study draws on theoretical perspectives that see childhood as a social construction and
doi:10.1016/j.ejon.2009.01.009
children as active contributors to the social world, whilst acknowledging that their contributions are mediated by their dependence on adults. Method: Ethnographic methods were used to develop detailed descriptions of the social and cultural needs of this group of children. Fieldwork was conducted in home and clinical settings over an eighteen month period to provide an account of how day to day social relations for children, families and health care professionals were experienced. Results: The results are presented as three conceptual data themes where cancer childhoods were seen as compromised, transformed and requiring restoration. Cancer diagnosis was a profound threat to the membership of the social category of childhood. The life limiting implications of the diagnosis challenged future childhoods and the effects of treatments undermined current childhoods. Parents responded to these threats with a focus on protecting children during current childhoods. Professionals strongly advocated specific normalisation strategies to maximise the current childhoods of children whose future was uncertain. Children resisted both the protective and normalisation strategies of adults, advocating acknowledgement of the restrictions on their current childhoods. Conclusion: The challenges of cancer care were accentuated by the competing ways in which parenthood and childhood were constituted. These results call for further exploration of the taken for granted ideas of childhood during cancer that professionals employ in their clinical practice from a perspective that acknowledges the structures that frame adult child relations and the context of care delivery.
Struggling on: Experiences of Foreign-Born Parents In Childhood Cancer Care Pernilla Pergert1, Solvig Ekblad2, Olle Bjo¨rk1, Karin Enska¨r3, Tom Andrews4 Karolinska Institutet, Dept. of Woman and Child Health, Stockholm, Sweden 2 Karolinska Institutet , Dept. of Clinical Neuroscience, Psychiatry, Stockholm, Sweden 3 ¨ nko ¨ ping University, Dept. of Nursing Science, Jo ¨ nko ¨ ping, Sweden Jo 4 University College Cork, Dept. of Nursing Studies, Cork, Ireland Purpose: Families with a foreign background are a natural feature of the Swedish society and with more then 100 nationalities represented in Sweden’s population cultural diversity is evident in health care, including paediatric oncology. The purpose of this study was to gain knowledge about the experiences and main concern of foreign-born parents in the context of paediatric oncology care. Method: In this qualitative study, grounded theory methodology was chosen because it aims to reveal how participants resolve their main concern. Eleven individual interviews were performed with foreign-born parents in paediatric oncology, four of them with the help of one and the same Arabic-speaking interpreter. Results: Results suggest that the main concern of foreign-born parents includes achieving the best possible care for their child and protecting their family’s interests in care. They often feel in a position of powerless dependence in relation to the healthcare staff and their need to struggle on accounts for much of their behaviour. Struggling on is about trying to keep 1
Abstracts / European Journal of Oncology Nursing 13 (2009) 60–63
going, to manage the life situation, and to take one day at a time. As parents struggle on in this position of powerless dependence, they will be using approaches for resourcing and protecting self-interest in health care. Conclusion: This study provides important insights into the human experience of being a parent dealing with childhood cancer care and the extra strains on foreign-born parents. The results of this study can help healthcare staff to be aware of parent’s approaches for resourcing and has implications for the management of parents struggling on by strengthening and empowering them in the care and parenting of their ill child. Healthcare staff also need to bridge obstacles to transcultural caring relationships and work for trustful cooperation in the common fight against childhood cancer.
The Experience of Families Who’s Child Received An Hematopoietic Stem Cells Transplantation Marie-France Vachon1, Irene Leboeuf2, Melissa Laroche1, Genevieve Mercier1, France Dupuis3, Michel Duval1, Martin A. Champagne1 1 CHU Ste-Justine, Cellular therapy program (hemato-oncology), Montreal, Qc, Canada 2 CHU Ste-Justine, Specialized pediatry department, Montreal, Qc, Canada 3 Montreal University, Faculty of Nursing, Montreal, Qc, Canada Purpose: Hematopoietic stem cells transplant (HSCT) has become a common option in the treatment of various diseases in children such as leukemia, severe aplastic anemia and immune deficiencies. It is well documented that HSCT is a very stressful experience for both the child and its family. However, this experience is still poorly described in the literature. To help understand the meaning of this experience for the family, an exploratory, longitudinal study was developed. Method: Participants consisted of: (a) children receiving an allogeneic transplant, (b) their mother (c) their father, and (d) the sibling donor. Semi-structured interviews were conducted with each participant at four times during the transplant’s process (pre-transplant, one week posttransplant, at discharge and 2-3 months post-discharge). Data was analyzed following Giorgi’s phenomenological method for each participant. In addition, to provide a more systemic understanding of the family experience, an in-depth case study of five of the families participating was also performed. Results: In this communication, results for each group of participant and for the family case study will be presented. Results show that although similar on some points, the experience takes a different meaning for each participant. When fathers experienced the HSCT as an inevitable journey, mothers perceived themselves as being the bedrock of the family during this experience. Despite the acuity of the situation, children recipients of the HSCT seem to undergo a new normal experience, with regards to their rather ‘‘out-of-the ordinary’’ previous health situation while the sibling donor describe the experience as an act of love. Results of the family case study highlight the (in)visible suffering experience. Conclusion: These findings provide a better understanding of the family experience with HSCT and are of upmost importance to guide the development of nursing interventions in order to help families cope with this stressful experience.
The Process of Relinquishing: Parental Struggle Between Loss and Preservation of Their Child Receiving Palliative Care Marijke Kars1, Mieke Grypdonck1, Ria Korte-Verhoef1, Hans van Delden2 1 UMCU, Julius Center: Nursing Sciences, Utrecht, Netherlands 2 UMCU, Julius Center: Medical Ethics, Utrecht, Netherlands Purpose: In the Netherlands each year 150 children die of cancer, most of them at home. Parents play the most important role in the care and support of the child. At the same time they have to deal with their own break down facing the loss of their child. Little is known about the process parents go through to let the child go and the effects of this process on the quality of life of their child. Method: Qualitative design: grounded theory. Of 23 children both parents (n¼44) were individually interviewed during the palliative phase. In seven cases additional interviews were conducted. In total 56 audio-taped interviews were transcribed verbatim. Analysis took place by a research team, supported by the computer programme NVivo7.
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Results: A description of the continuous internal struggle parents experience between the confrontation with the loss of their child and the wish to preserve the child becoming clear in a process of relinquishing. Several factors affecting this process were identified: perception and coping with physical impairment, hope, parental role, suffering, fear, burden, professional guidance, child age. In a way relinquishing seems necessary to be able to undertake caring activities tuned to the needs of the child. Parents differed in their possibilities to follow the downward process of their child; some parents ran after, on the contrary some parents, especially in the terminal phase, ran ahead. The process of relinquishing influences parental decision-making and therefore has direct consequences for the child. Conclusion: Relinquishing is not a natural process but asks cognitive and emotional efforts to deal with the loss. To optimize the child’s caring situation professional caregivers should place their treatment and caring actions in the context of loss and preservation in order to support parents in their process of relinquishing in order to gain maximum quality of life for the child.
Symptom Assessment With Patient Surveys Christina Baggott1 1 University of California, San Francisco, Department of Physiological Nursing, San Francisco, United States Purpose: Primary aim: To compare the number of symptoms detected when patients (or their caregivers) complete symptom questionnaires with the number of symptoms reported in patients’ medical records. Secondary aim: To determine what factors affect the documentation of patient symptoms. Method: Pediatric oncology patients 0 to 18 years of age, receiving chemotherapy at a university-based children’s hospital in the Western United States were eligible for this study. After consent and assent were obtained, the subjects were randomized to the control or intervention groups. The subjects in the control group proceeded with their clinic visits as scheduled. Clinicians obtained an interval history and documented the visit with a dictation (the standard care for these patients). Subjects or their caregivers (as applicable for children younger than 12 years of age) in the intervention group completed the Memorial Symptom Assessment Scale 10-18 (MSAS 10-18) prior to their clinic visit. The MSAS 10-18 is a valid and reliable tool used to assess the frequency, intensity, and distress of pediatric oncology patients’ symptoms. Results: A total of 74 subjects were enrolled on the trial. The mean number of symptoms detected by self-report (9.34, 95% CI: 7.75-10.93) was significantly higher than the symptoms reported by clinicians in the medical record (1.81, 95% CI: 1.47-2.15) Conclusion: Further evaluation of discrepancies between clinician and self-report of symptoms is warranted. The use of symptom checklists for patient report may provide more thorough and accurate data by which to evaluate disease and treatment-related toxicities.
Low Level Laser Therapy In The Treatment of Oral Mucositis On A Paediatric Haematology - Oncology Ward, A Pilot Study 1 Ghent University Hospital, Dept. of Paediatric Haematology-Oncology, Ghent, Belgium 2 Ghent University, Dental School, Dept. of Paediatric Dentistry & Special Care, PaeCaMed-research, Ghent, Belgium Purpose: Data collection on our ward indicates severe oral mucositis in children during induction therapy for ALL and after high dose chemotherapy. Currently there are few effective strategies to prevent or cure mucositis. Due to a lack of scientific literature, this pilot study was designed to assess the effectiveness of Low Level Laser Therapy (¼LLLT) as treatment for oral mucositis. In order to establish general guidelines, treatment frequency was a secondary objective. Method: When mucositis occurred, grade as well as impact on oral functions were evaluated (WHO-criteria). Before and immediately after LLLT, pain was measured by visual analogue scale or faces pain scale. LLLT was performed every 2 days until wound healing. Data about chemotherapy regimen, blood cell counts, LLLT treatment and frequency were recorded.
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Abstracts / European Journal of Oncology Nursing 13 (2009) 60–63
Results: During a 12 month period, 16 children, mostly with diagnosis of leukemia and lymphoma (n¼12), suffering from chemotherapy-induced mucositis, were treated with LLLT. Age ranged from 3.4 to 16.8 years (mean 9.4 years). During 50 mucositis episodes, 125 treatment visits were made by the dentist for LLLT. Distribution of mucositis grade was : grade 1 (n¼9), grade 2 (n¼16), grade 3 (n¼21) and grade 4 (n¼4). A mean of 2.5 treatments/episode were necessary to reduce the grade of mucositis and to obtain overall pain relief. Average duration of a mucositis episode was 5 days. Already after the first LLLT session all patients experienced immediate pain relief and difficulties with food-intake and/or swallowing disappeared. Conclusion: This preliminary survey demonstrates that LLLT, in addition to standard oral care, causes an immediate analgesic effect. Two to 3 LLLT sessions per mucositis episode seem a realistic approach. Patient comfort improved by accelerated healing of the lesions. Further research is necessary to confirm our results.
The trajectory of feelings and coping were different according to the treatment course. Adolescents in whom course was comparatively good chose mainly emotion-focused coping strategies, while adolescents in whom course was difficult chose not only emotion-focused but problemfocused coping strategies. From the cognitive control point of view, adolescents developed their coping over the trajectory of the treatment.
1. The emotion-focused coping strategies included getting tough on others and refusal to comply with treatment changed to problem-focused coping strategies included talking and information seeking to understand their situation. The support from their family effected this change. 2. Adolescents coped based on their experience. For example, one 12-year-old kept silent when she was told that the treatment was not effective, in addition she kept silent again when her diagnosis changed. This silent enabled her to think it could be worse, and then she accepted her situation. 3. Adolescents first used avoidance and expressed negative feelings during difficult situations. Then they accepted their situation and used positive thinking to cope.
The child diagnosed with cancer. How to end-up with a healthy adult. Our method of achieving it. A nurses perspective Paola Hernandez1, Lara Sanchez2, Estefania Rodriguez3, Blanca Lopez-Ibor 3 Hospital Madrid Monteprı´ncipe, Pediatric Hematology / Oncology Unit , Boadilla del Monte. Madrid , Spain 2 Hospital Monteprincipe , Paediatrical Hematology Oncology Unit , Madrid, Spain 3 Hospital Monteprincipe , Paediatric Hematology Oncology Unit , Madrid. Boadilla del Monte , Spain Purpose: During the last decades, paediatric cancer survival has achieved a significant improvement reaching a survival rate close to 75% at 5 years in Spain. This work explain the advantages that the child and his family obtain when the hospital adapts to his physical, psychological, social and spiritual needs. Method: We made a bibliography research, so we find that most of the paediatric oncology units in Spain normally don’t adapt physical, psychological, social and spiritual child needs. And our unit does it, picking up good results. Results: When the child is admitted to a paediatric hematology / oncology unit, he finds himself in a completely new environment and surrounded by strangers. The needles begin to form part of his daily routine along with the chemotherapy treatment. There is as well a significant change of his physical appearance. It is very important that the child understands that all of this is necessary and that his participation and strength to fight against cancer is essential to achieve his complete recovery. We think that the best way to achieve all this is adapting the paediatric oncology team- work to the child and his family needs. Conclusion: We work trying not to forget that the child´s smile reflects his well-being, so it is also our job to keep it going.
1
The Trajectory of Feelings and Coping In Hospitalized Adolescents With Hematologic/Oncologic Disease Tomo Watanabe1, Nobue Nakamura2, Junko Ogawa2, akiko araki2 Chiba university, Graduate School of Nursing, Chiba, Japan 2 Chiba university, School of Nursing, Chiba, Japan Purpose: Clarify the trajectory of feelings and coping of the hospitalized adolescents with hematologic/oncologic disease, and related factors. Method: Subjects were six adolescents with hematologic/oncologic disease undergoing chemotherapy or outpatient follow-up therapy. Subjects were recruited from pediatric units and oncology outpatient clinics in Japan. Data were collected using participant observation and semi-structured interviews with patients, their parents and unit nurses.Participants were asked to describe the hospitalization experience, their feelings and general feedback. The data was analyzed using the qualitative method. Results: The trajectory of feelings included: shock at diagnosis, denial, depression and hopelessness when the treatment course was unexpected or prolonged, and anxiety about returning to school.
1
Conclusion: These results suggest that it is important to recognize their coping strategies and support adolescents in coping.
Nutritional Management in Paediatric Oncology Units in the UK and Ireland - A Survey of Practice Karen Selwood1, Evelyn Ward2 Royal Liverpool Childrens Hospital, Oncology, Liverpool, United kingdom 2 St James University Hospital, Dietetic Department, Leeds, United kingdom Purpose: The maintenance of an adequate nutritional intake is vital for the child or young person undergoing treatment for a malignancy. Inability to maintain nutrition can lead to poor tolerance of treatment, increased risk of infectious complications and a potential worse outcome. Good nutritional support is vital however there does not appear to be a consistent approach to either nutritional support or assessment. To find out what actually happened in the 21 Childrens Cancer and Leukaemia Group Centres in the United Kingdom and Ireland the Paediatric Oncology Nurses Forums’ (PONF) Clinical Practice Group and the Paediatric Oncology Dieticians Interest Group (PODIG) decided to survey nutritional practice. Method: Two questionnaires covering a variety of nutritional topics were sent to each of the 21 paeditatic oncology centres. These were completed by a member of the nursing team and by the dietician involved in each unit. Results: There was a 100% return rate for the nursing questionnaires and 66% return rate for the dieticians. Each centre’s results were compared and the results showed an inconsistent approach in a variety of areas of nutritional practice for these patients. The extent of nutritional assessment varied with no specific tool being used. Education of children and families did occur but a variety of information was in use. All centres used most forms of supportive feeding – nutritional supplements, nasogastric feeding and total parentral nutrition but the criteria for their use was not consistent. Conclusion: Nutritional support to prevent loss of lean body mass is an integral part of treatment of these patients to improve their outcomes, help them deal with treatment and improve their quality of life. The recognition that there is no national guidance agreed upon in the United Kingdom to optimise nutrition for paediatric oncology patients is important and an area where future development and research is required. 1
A Pilot Program To Follow Up Adult Survivors of Childhood Cancer In British Columbia, Canada Grace Chan1, Angela Pretula2 BC Childrens Hospital, Oncology/Hematology/BMT, Vancouver, Canada 2 BC Children’s Hospital, Oncology/Hematology/BMT, Vancouver, Canada Purpose: To evaluate the health status of adult survivors of childhood cancer who are not regularly followed by our clinic, focusing on those at 1
Abstracts / European Journal of Oncology Nursing 13 (2009) 60–63
highest risk for late effects of treatment and to evaluate the effectiveness of such a program. Method: The highest risk group of survivors was identified as those who were diagnosed under the age of 17 years and had received radiation or anthracyclines. An attempt to contact these former patients was made by mail, inviting them to participate in this follow up clinic. On participation in the clinic, the patients were offered:
A review of their previous treatment A written summary of their treatment Advice regarding possible late effects of treatment and how to prevent or treat them Help to organize any recommended tests if necessary Collaboration with their own doctor to maintain their health Participation in research studies of long term outcome if they are interested Patients completed a brief questionnaire to evaluate their quality of life. Both patients and physicians evaluated the value of the clinic visit. Results: Invitation to participate in the follow up clinic was mailed out to 93 former patients with a 19% response. Of the patients seen to date, new health problems were detected in 50% of the patients. 70% of the patients seen required interventional actions. 100% of the patients found the visit useful and learned more about their diagnosis and the late effects of treatment on their health. Conclusion: Our preliminary findings to date confirm previous studies that continued medical surveillance of adult survivors of childhood cancer is necessary and that the care be provided by health care providers who are familiar with the health risks/late effects from the treatment for childhood cancer. Ability to contact former patients remains a challenge and needs to be further explored.
Enteral Nutrition During Blood and Marrow Transplantation Ellen Olson1, Angelita Lopez2, Ellen O’Leary2 1 Childrens Healthcare of Atlanta, Aflac Cancer Center and Blood Disorder Service, Atlanta, United states 2 Childrens Healthcare of Atlanta, Nutrition, Atlanta, United states Purpose: The purpose of this presentation is to describe the experience of a single institution with enteral nutrition within their pediatric blood and marrow transplant (BMT) population. A secondary aim is to develop a standard of care for enteral nutrition in the pediatric BMT patient. Method: Nasogastric tube (NG) feedings were initiated in patients who had inadequate caloric intake and persistent anorexia. Experience with 31 pediatric BMT patients over a 12-month interval is reported. Results: Seventeen of the 31 patients (55%) met criteria for voluntary oral intake of kilocalories and protein before discharge, and were weaned off all nutrition support. Fourteen patients (45%) failed to meet goals for kilocalories and protein and were started on NG tube feedings. Eleven of these 14 patients tolerated NG feedings well and were discharged 1-3 days after feeding initiation. Three patients were discharged on total parental nutrition (TPN) because of gastrointestinal problems. This is consistent with what we had seen in previous years. The range of time for length of stay did not vary between the patients who were discharged on oral, TPN, or NG feedings. There was one re-admission for nutritionrelated problems, a patient on total parental nutrition. The type of transplant was not an indicator of the need for post-discharge nutrition support.
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Conclusion: These results indicate that enteral feedings can be used successfully in the pediatric BMT population. Enteral feeding provides advantages over TPN in the areas of safety, efficacy, and cost. Based on these findings our institution is currently developing a protocol to begin enteral nutrition earlier in the BMT process. Further exploration of practices and outcomes is needed to expand evidence based practice for management of enteral nutrition in the pediatric BMT patient.
Reaching A National Consensus On An Approach To Low Risk Febrile Neutropenia: The Challenges of A Delphi Survey Faith Gibson1, John Hartley2, Sheila Lane3, Robert Phillips4, Karen Selwood5, Roderick Skinner6, Julia Chisholm7 1 UCL Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust, Centre for Nursing and Allied Health Professions Research, London, United kingdom 2 Great Ormond Street Hospital for Children NHS Trust, Microbiology Department, London, United kingdom 3 The Children’s Hospital, Paediatric Haematology Oncology Unit, Oxford, United kingdom 4 University of York, Centre for Reviews and Dissemination, York, United kingdom 5 Alder Hey Children’s Hospital, Paediatric Haematology and Oncology, Liverpool, United kingdom 6 Royal Victoria Infirmary, Department of Adolescent and Paediatric Oncology, Newcastle, United kingdom 7 Great Ormond Street Hospital for Children NHS Trust, Paediatric Haematology and Oncology, London, United kingdom Purpose: Febrile neutropenia is the second commonest reason for admission to children’s oncology wards, and accounts for a considerable part of the morbidity associated with cancer in children and young adults. Reduced intensity therapy of febrile neutropenia has been shown to be safe and effective in a ‘low risk’ group. However, there remains widespread variation in practice across the UK (from the definitions of ‘fever’ and ‘neutropenia’ to the nature and duration of antibiotic therapy). The Childhood Cancer and Leukaemia Group [CCLG] and the Paediatric Oncology Nurses Forum [PONF] supportive care group are undertaking a Delphi survey, using consensus methods to develop national guidelines, which can be adapted for local microbiological patterns and resource constraints to enable the consistent treatment of children. Method: An initial guideline containing 22 recommendations and statements was created from a management pathway generated by the CCLG/ PONF clinicians, supported by systematic reviews of the relevant literature, combined with a survey of current practice in the 21 CCLG centres, and audits from groups with an interest in this field. This was subjected to the first round of a Delphi survey of stakeholding clinicians (nurses, doctors, pharmacists and microbiologists) from each centre and related shared care hospitals. Results: One hundred and 41 responses were obtained, with 50% of principle treatment centres and shared care centres returning questionnaires. Of the 22 questions, 20 reached agreement (>80% agreed or strongly agreed) and only one had significant disagreement (>20%). A second round will be completed by April 2008. Conclusion: This paper will focus on the development of the guideline, sharing with participants the challenges of, and some solutions to, using the highly respected Delphi survey method. This is an excellent example of how the national multidisciplinary group can coordinate and champion change within the under-investigated area of children’s cancer supportive care.
Contents lists available at ScienceDirect
European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
40th Congress of the International Society of Paediatric Oncology (SIOP), Berlin, Germany, October, 2008 SELECTED ABSTRACTS Living With Childhood Cancer - Family Members’ Experiences and Needs Maria Bjo¨rk1, Berit Nordstro¨m1, Thomas Wiebe2, Inger Hallstro¨m3 1 Lund University, Department of Health Sciences, Lund, Sweden 2 Lund University Hospital, Department of Pediatrics, Lund, Sweden 3 Lund University, Department of Health Sciences, The Vårdal Institute, Lund, Sweden Purpose: The aim of the project was to elucidate the families’ lived experiences and needs during a child’s cancer trajectory and to describe how the disease and treatment influence individuals within the family and the family as a unit. Method: By means of interviews and observations seventeen families with a child under 12 and newly diagnosed with cancer were followed through and after the treatment. Parents, patients and siblings seven years or older were interviewed at the time of diagnosis, during treatment and after its completion. Patients younger than seven were observed during their initial hospitalization. Results: The families’ life world changed during their child’s cancer trajectory. The family became vulnerable as their fundamental feelings of security disappeared and life became more taxing. Worry became a factor in their lives but was reduced when they understood more about what was happening. However, especially parent’s worry, easily increased when new things occurred. There was a constant swing between disorder and control. Perspectives on life changed as family members tried to focus on enjoyment and positive events. They felt relieved and grateful when things were managed successfully. The parents became increasingly important to the children and family members learned the value of being close to each other. When the treatment was complete the families felt happy and relieved although they still experienced times of stress. They were also grateful for support from others and realized the need for a proper relationship with staff. This applied to patients, siblings and parents. However, parents felt more isolated from staff in times of stress, and in times of poor communication or discontinuity of the staff. Conclusion: The findings can deepen the understanding of what it is like being a family with a child undergoing cancer treatment.
Cancer Childhoods: Analysis of Data From an Ethnographic Study of Childhood Cancer in British Bangladeshi Children Paula Kelly1 1 Kings College London, Health care , London, United Kingdom Purpose: This study set out to investigate the impact of cancer on the experiences of childhood for British Bangladeshi children living in the United Kingdom. British Bangladeshi children represent a significant minority group whose cultural heritage may challenge underlying assumptions of biomedical paediatric cancer care. The study draws on theoretical perspectives that see childhood as a social construction and
doi:10.1016/j.ejon.2009.01.009
children as active contributors to the social world, whilst acknowledging that their contributions are mediated by their dependence on adults. Method: Ethnographic methods were used to develop detailed descriptions of the social and cultural needs of this group of children. Fieldwork was conducted in home and clinical settings over an eighteen month period to provide an account of how day to day social relations for children, families and health care professionals were experienced. Results: The results are presented as three conceptual data themes where cancer childhoods were seen as compromised, transformed and requiring restoration. Cancer diagnosis was a profound threat to the membership of the social category of childhood. The life limiting implications of the diagnosis challenged future childhoods and the effects of treatments undermined current childhoods. Parents responded to these threats with a focus on protecting children during current childhoods. Professionals strongly advocated specific normalisation strategies to maximise the current childhoods of children whose future was uncertain. Children resisted both the protective and normalisation strategies of adults, advocating acknowledgement of the restrictions on their current childhoods. Conclusion: The challenges of cancer care were accentuated by the competing ways in which parenthood and childhood were constituted. These results call for further exploration of the taken for granted ideas of childhood during cancer that professionals employ in their clinical practice from a perspective that acknowledges the structures that frame adult child relations and the context of care delivery.
Struggling on: Experiences of Foreign-Born Parents In Childhood Cancer Care Pernilla Pergert1, Solvig Ekblad2, Olle Bjo¨rk1, Karin Enska¨r3, Tom Andrews4 Karolinska Institutet, Dept. of Woman and Child Health, Stockholm, Sweden 2 Karolinska Institutet , Dept. of Clinical Neuroscience, Psychiatry, Stockholm, Sweden 3 ¨ nko ¨ ping University, Dept. of Nursing Science, Jo ¨ nko ¨ ping, Sweden Jo 4 University College Cork, Dept. of Nursing Studies, Cork, Ireland Purpose: Families with a foreign background are a natural feature of the Swedish society and with more then 100 nationalities represented in Sweden’s population cultural diversity is evident in health care, including paediatric oncology. The purpose of this study was to gain knowledge about the experiences and main concern of foreign-born parents in the context of paediatric oncology care. Method: In this qualitative study, grounded theory methodology was chosen because it aims to reveal how participants resolve their main concern. Eleven individual interviews were performed with foreign-born parents in paediatric oncology, four of them with the help of one and the same Arabic-speaking interpreter. Results: Results suggest that the main concern of foreign-born parents includes achieving the best possible care for their child and protecting their family’s interests in care. They often feel in a position of powerless dependence in relation to the healthcare staff and their need to struggle on accounts for much of their behaviour. Struggling on is about trying to keep 1
Abstracts / European Journal of Oncology Nursing 13 (2009) 60–63
going, to manage the life situation, and to take one day at a time. As parents struggle on in this position of powerless dependence, they will be using approaches for resourcing and protecting self-interest in health care. Conclusion: This study provides important insights into the human experience of being a parent dealing with childhood cancer care and the extra strains on foreign-born parents. The results of this study can help healthcare staff to be aware of parent’s approaches for resourcing and has implications for the management of parents struggling on by strengthening and empowering them in the care and parenting of their ill child. Healthcare staff also need to bridge obstacles to transcultural caring relationships and work for trustful cooperation in the common fight against childhood cancer.
The Experience of Families Who’s Child Received An Hematopoietic Stem Cells Transplantation Marie-France Vachon1, Irene Leboeuf2, Melissa Laroche1, Genevieve Mercier1, France Dupuis3, Michel Duval1, Martin A. Champagne1 1 CHU Ste-Justine, Cellular therapy program (hemato-oncology), Montreal, Qc, Canada 2 CHU Ste-Justine, Specialized pediatry department, Montreal, Qc, Canada 3 Montreal University, Faculty of Nursing, Montreal, Qc, Canada Purpose: Hematopoietic stem cells transplant (HSCT) has become a common option in the treatment of various diseases in children such as leukemia, severe aplastic anemia and immune deficiencies. It is well documented that HSCT is a very stressful experience for both the child and its family. However, this experience is still poorly described in the literature. To help understand the meaning of this experience for the family, an exploratory, longitudinal study was developed. Method: Participants consisted of: (a) children receiving an allogeneic transplant, (b) their mother (c) their father, and (d) the sibling donor. Semi-structured interviews were conducted with each participant at four times during the transplant’s process (pre-transplant, one week posttransplant, at discharge and 2-3 months post-discharge). Data was analyzed following Giorgi’s phenomenological method for each participant. In addition, to provide a more systemic understanding of the family experience, an in-depth case study of five of the families participating was also performed. Results: In this communication, results for each group of participant and for the family case study will be presented. Results show that although similar on some points, the experience takes a different meaning for each participant. When fathers experienced the HSCT as an inevitable journey, mothers perceived themselves as being the bedrock of the family during this experience. Despite the acuity of the situation, children recipients of the HSCT seem to undergo a new normal experience, with regards to their rather ‘‘out-of-the ordinary’’ previous health situation while the sibling donor describe the experience as an act of love. Results of the family case study highlight the (in)visible suffering experience. Conclusion: These findings provide a better understanding of the family experience with HSCT and are of upmost importance to guide the development of nursing interventions in order to help families cope with this stressful experience.
The Process of Relinquishing: Parental Struggle Between Loss and Preservation of Their Child Receiving Palliative Care Marijke Kars1, Mieke Grypdonck1, Ria Korte-Verhoef1, Hans van Delden2 1 UMCU, Julius Center: Nursing Sciences, Utrecht, Netherlands 2 UMCU, Julius Center: Medical Ethics, Utrecht, Netherlands Purpose: In the Netherlands each year 150 children die of cancer, most of them at home. Parents play the most important role in the care and support of the child. At the same time they have to deal with their own break down facing the loss of their child. Little is known about the process parents go through to let the child go and the effects of this process on the quality of life of their child. Method: Qualitative design: grounded theory. Of 23 children both parents (n¼44) were individually interviewed during the palliative phase. In seven cases additional interviews were conducted. In total 56 audio-taped interviews were transcribed verbatim. Analysis took place by a research team, supported by the computer programme NVivo7.
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Results: A description of the continuous internal struggle parents experience between the confrontation with the loss of their child and the wish to preserve the child becoming clear in a process of relinquishing. Several factors affecting this process were identified: perception and coping with physical impairment, hope, parental role, suffering, fear, burden, professional guidance, child age. In a way relinquishing seems necessary to be able to undertake caring activities tuned to the needs of the child. Parents differed in their possibilities to follow the downward process of their child; some parents ran after, on the contrary some parents, especially in the terminal phase, ran ahead. The process of relinquishing influences parental decision-making and therefore has direct consequences for the child. Conclusion: Relinquishing is not a natural process but asks cognitive and emotional efforts to deal with the loss. To optimize the child’s caring situation professional caregivers should place their treatment and caring actions in the context of loss and preservation in order to support parents in their process of relinquishing in order to gain maximum quality of life for the child.
Symptom Assessment With Patient Surveys Christina Baggott1 1 University of California, San Francisco, Department of Physiological Nursing, San Francisco, United States Purpose: Primary aim: To compare the number of symptoms detected when patients (or their caregivers) complete symptom questionnaires with the number of symptoms reported in patients’ medical records. Secondary aim: To determine what factors affect the documentation of patient symptoms. Method: Pediatric oncology patients 0 to 18 years of age, receiving chemotherapy at a university-based children’s hospital in the Western United States were eligible for this study. After consent and assent were obtained, the subjects were randomized to the control or intervention groups. The subjects in the control group proceeded with their clinic visits as scheduled. Clinicians obtained an interval history and documented the visit with a dictation (the standard care for these patients). Subjects or their caregivers (as applicable for children younger than 12 years of age) in the intervention group completed the Memorial Symptom Assessment Scale 10-18 (MSAS 10-18) prior to their clinic visit. The MSAS 10-18 is a valid and reliable tool used to assess the frequency, intensity, and distress of pediatric oncology patients’ symptoms. Results: A total of 74 subjects were enrolled on the trial. The mean number of symptoms detected by self-report (9.34, 95% CI: 7.75-10.93) was significantly higher than the symptoms reported by clinicians in the medical record (1.81, 95% CI: 1.47-2.15) Conclusion: Further evaluation of discrepancies between clinician and self-report of symptoms is warranted. The use of symptom checklists for patient report may provide more thorough and accurate data by which to evaluate disease and treatment-related toxicities.
Low Level Laser Therapy In The Treatment of Oral Mucositis On A Paediatric Haematology - Oncology Ward, A Pilot Study 1 Ghent University Hospital, Dept. of Paediatric Haematology-Oncology, Ghent, Belgium 2 Ghent University, Dental School, Dept. of Paediatric Dentistry & Special Care, PaeCaMed-research, Ghent, Belgium Purpose: Data collection on our ward indicates severe oral mucositis in children during induction therapy for ALL and after high dose chemotherapy. Currently there are few effective strategies to prevent or cure mucositis. Due to a lack of scientific literature, this pilot study was designed to assess the effectiveness of Low Level Laser Therapy (¼LLLT) as treatment for oral mucositis. In order to establish general guidelines, treatment frequency was a secondary objective. Method: When mucositis occurred, grade as well as impact on oral functions were evaluated (WHO-criteria). Before and immediately after LLLT, pain was measured by visual analogue scale or faces pain scale. LLLT was performed every 2 days until wound healing. Data about chemotherapy regimen, blood cell counts, LLLT treatment and frequency were recorded.
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Results: During a 12 month period, 16 children, mostly with diagnosis of leukemia and lymphoma (n¼12), suffering from chemotherapy-induced mucositis, were treated with LLLT. Age ranged from 3.4 to 16.8 years (mean 9.4 years). During 50 mucositis episodes, 125 treatment visits were made by the dentist for LLLT. Distribution of mucositis grade was : grade 1 (n¼9), grade 2 (n¼16), grade 3 (n¼21) and grade 4 (n¼4). A mean of 2.5 treatments/episode were necessary to reduce the grade of mucositis and to obtain overall pain relief. Average duration of a mucositis episode was 5 days. Already after the first LLLT session all patients experienced immediate pain relief and difficulties with food-intake and/or swallowing disappeared. Conclusion: This preliminary survey demonstrates that LLLT, in addition to standard oral care, causes an immediate analgesic effect. Two to 3 LLLT sessions per mucositis episode seem a realistic approach. Patient comfort improved by accelerated healing of the lesions. Further research is necessary to confirm our results.
The trajectory of feelings and coping were different according to the treatment course. Adolescents in whom course was comparatively good chose mainly emotion-focused coping strategies, while adolescents in whom course was difficult chose not only emotion-focused but problemfocused coping strategies. From the cognitive control point of view, adolescents developed their coping over the trajectory of the treatment.
1. The emotion-focused coping strategies included getting tough on others and refusal to comply with treatment changed to problem-focused coping strategies included talking and information seeking to understand their situation. The support from their family effected this change. 2. Adolescents coped based on their experience. For example, one 12-year-old kept silent when she was told that the treatment was not effective, in addition she kept silent again when her diagnosis changed. This silent enabled her to think it could be worse, and then she accepted her situation. 3. Adolescents first used avoidance and expressed negative feelings during difficult situations. Then they accepted their situation and used positive thinking to cope.
The child diagnosed with cancer. How to end-up with a healthy adult. Our method of achieving it. A nurses perspective Paola Hernandez1, Lara Sanchez2, Estefania Rodriguez3, Blanca Lopez-Ibor 3 Hospital Madrid Monteprı´ncipe, Pediatric Hematology / Oncology Unit , Boadilla del Monte. Madrid , Spain 2 Hospital Monteprincipe , Paediatrical Hematology Oncology Unit , Madrid, Spain 3 Hospital Monteprincipe , Paediatric Hematology Oncology Unit , Madrid. Boadilla del Monte , Spain Purpose: During the last decades, paediatric cancer survival has achieved a significant improvement reaching a survival rate close to 75% at 5 years in Spain. This work explain the advantages that the child and his family obtain when the hospital adapts to his physical, psychological, social and spiritual needs. Method: We made a bibliography research, so we find that most of the paediatric oncology units in Spain normally don’t adapt physical, psychological, social and spiritual child needs. And our unit does it, picking up good results. Results: When the child is admitted to a paediatric hematology / oncology unit, he finds himself in a completely new environment and surrounded by strangers. The needles begin to form part of his daily routine along with the chemotherapy treatment. There is as well a significant change of his physical appearance. It is very important that the child understands that all of this is necessary and that his participation and strength to fight against cancer is essential to achieve his complete recovery. We think that the best way to achieve all this is adapting the paediatric oncology team- work to the child and his family needs. Conclusion: We work trying not to forget that the child´s smile reflects his well-being, so it is also our job to keep it going.
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The Trajectory of Feelings and Coping In Hospitalized Adolescents With Hematologic/Oncologic Disease Tomo Watanabe1, Nobue Nakamura2, Junko Ogawa2, akiko araki2 Chiba university, Graduate School of Nursing, Chiba, Japan 2 Chiba university, School of Nursing, Chiba, Japan Purpose: Clarify the trajectory of feelings and coping of the hospitalized adolescents with hematologic/oncologic disease, and related factors. Method: Subjects were six adolescents with hematologic/oncologic disease undergoing chemotherapy or outpatient follow-up therapy. Subjects were recruited from pediatric units and oncology outpatient clinics in Japan. Data were collected using participant observation and semi-structured interviews with patients, their parents and unit nurses.Participants were asked to describe the hospitalization experience, their feelings and general feedback. The data was analyzed using the qualitative method. Results: The trajectory of feelings included: shock at diagnosis, denial, depression and hopelessness when the treatment course was unexpected or prolonged, and anxiety about returning to school.
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Conclusion: These results suggest that it is important to recognize their coping strategies and support adolescents in coping.
Nutritional Management in Paediatric Oncology Units in the UK and Ireland - A Survey of Practice Karen Selwood1, Evelyn Ward2 Royal Liverpool Childrens Hospital, Oncology, Liverpool, United kingdom 2 St James University Hospital, Dietetic Department, Leeds, United kingdom Purpose: The maintenance of an adequate nutritional intake is vital for the child or young person undergoing treatment for a malignancy. Inability to maintain nutrition can lead to poor tolerance of treatment, increased risk of infectious complications and a potential worse outcome. Good nutritional support is vital however there does not appear to be a consistent approach to either nutritional support or assessment. To find out what actually happened in the 21 Childrens Cancer and Leukaemia Group Centres in the United Kingdom and Ireland the Paediatric Oncology Nurses Forums’ (PONF) Clinical Practice Group and the Paediatric Oncology Dieticians Interest Group (PODIG) decided to survey nutritional practice. Method: Two questionnaires covering a variety of nutritional topics were sent to each of the 21 paeditatic oncology centres. These were completed by a member of the nursing team and by the dietician involved in each unit. Results: There was a 100% return rate for the nursing questionnaires and 66% return rate for the dieticians. Each centre’s results were compared and the results showed an inconsistent approach in a variety of areas of nutritional practice for these patients. The extent of nutritional assessment varied with no specific tool being used. Education of children and families did occur but a variety of information was in use. All centres used most forms of supportive feeding – nutritional supplements, nasogastric feeding and total parentral nutrition but the criteria for their use was not consistent. Conclusion: Nutritional support to prevent loss of lean body mass is an integral part of treatment of these patients to improve their outcomes, help them deal with treatment and improve their quality of life. The recognition that there is no national guidance agreed upon in the United Kingdom to optimise nutrition for paediatric oncology patients is important and an area where future development and research is required. 1
A Pilot Program To Follow Up Adult Survivors of Childhood Cancer In British Columbia, Canada Grace Chan1, Angela Pretula2 BC Childrens Hospital, Oncology/Hematology/BMT, Vancouver, Canada 2 BC Children’s Hospital, Oncology/Hematology/BMT, Vancouver, Canada Purpose: To evaluate the health status of adult survivors of childhood cancer who are not regularly followed by our clinic, focusing on those at 1
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highest risk for late effects of treatment and to evaluate the effectiveness of such a program. Method: The highest risk group of survivors was identified as those who were diagnosed under the age of 17 years and had received radiation or anthracyclines. An attempt to contact these former patients was made by mail, inviting them to participate in this follow up clinic. On participation in the clinic, the patients were offered:
A review of their previous treatment A written summary of their treatment Advice regarding possible late effects of treatment and how to prevent or treat them Help to organize any recommended tests if necessary Collaboration with their own doctor to maintain their health Participation in research studies of long term outcome if they are interested Patients completed a brief questionnaire to evaluate their quality of life. Both patients and physicians evaluated the value of the clinic visit. Results: Invitation to participate in the follow up clinic was mailed out to 93 former patients with a 19% response. Of the patients seen to date, new health problems were detected in 50% of the patients. 70% of the patients seen required interventional actions. 100% of the patients found the visit useful and learned more about their diagnosis and the late effects of treatment on their health. Conclusion: Our preliminary findings to date confirm previous studies that continued medical surveillance of adult survivors of childhood cancer is necessary and that the care be provided by health care providers who are familiar with the health risks/late effects from the treatment for childhood cancer. Ability to contact former patients remains a challenge and needs to be further explored.
Enteral Nutrition During Blood and Marrow Transplantation Ellen Olson1, Angelita Lopez2, Ellen O’Leary2 1 Childrens Healthcare of Atlanta, Aflac Cancer Center and Blood Disorder Service, Atlanta, United states 2 Childrens Healthcare of Atlanta, Nutrition, Atlanta, United states Purpose: The purpose of this presentation is to describe the experience of a single institution with enteral nutrition within their pediatric blood and marrow transplant (BMT) population. A secondary aim is to develop a standard of care for enteral nutrition in the pediatric BMT patient. Method: Nasogastric tube (NG) feedings were initiated in patients who had inadequate caloric intake and persistent anorexia. Experience with 31 pediatric BMT patients over a 12-month interval is reported. Results: Seventeen of the 31 patients (55%) met criteria for voluntary oral intake of kilocalories and protein before discharge, and were weaned off all nutrition support. Fourteen patients (45%) failed to meet goals for kilocalories and protein and were started on NG tube feedings. Eleven of these 14 patients tolerated NG feedings well and were discharged 1-3 days after feeding initiation. Three patients were discharged on total parental nutrition (TPN) because of gastrointestinal problems. This is consistent with what we had seen in previous years. The range of time for length of stay did not vary between the patients who were discharged on oral, TPN, or NG feedings. There was one re-admission for nutritionrelated problems, a patient on total parental nutrition. The type of transplant was not an indicator of the need for post-discharge nutrition support.
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Conclusion: These results indicate that enteral feedings can be used successfully in the pediatric BMT population. Enteral feeding provides advantages over TPN in the areas of safety, efficacy, and cost. Based on these findings our institution is currently developing a protocol to begin enteral nutrition earlier in the BMT process. Further exploration of practices and outcomes is needed to expand evidence based practice for management of enteral nutrition in the pediatric BMT patient.
Reaching A National Consensus On An Approach To Low Risk Febrile Neutropenia: The Challenges of A Delphi Survey Faith Gibson1, John Hartley2, Sheila Lane3, Robert Phillips4, Karen Selwood5, Roderick Skinner6, Julia Chisholm7 1 UCL Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust, Centre for Nursing and Allied Health Professions Research, London, United kingdom 2 Great Ormond Street Hospital for Children NHS Trust, Microbiology Department, London, United kingdom 3 The Children’s Hospital, Paediatric Haematology Oncology Unit, Oxford, United kingdom 4 University of York, Centre for Reviews and Dissemination, York, United kingdom 5 Alder Hey Children’s Hospital, Paediatric Haematology and Oncology, Liverpool, United kingdom 6 Royal Victoria Infirmary, Department of Adolescent and Paediatric Oncology, Newcastle, United kingdom 7 Great Ormond Street Hospital for Children NHS Trust, Paediatric Haematology and Oncology, London, United kingdom Purpose: Febrile neutropenia is the second commonest reason for admission to children’s oncology wards, and accounts for a considerable part of the morbidity associated with cancer in children and young adults. Reduced intensity therapy of febrile neutropenia has been shown to be safe and effective in a ‘low risk’ group. However, there remains widespread variation in practice across the UK (from the definitions of ‘fever’ and ‘neutropenia’ to the nature and duration of antibiotic therapy). The Childhood Cancer and Leukaemia Group [CCLG] and the Paediatric Oncology Nurses Forum [PONF] supportive care group are undertaking a Delphi survey, using consensus methods to develop national guidelines, which can be adapted for local microbiological patterns and resource constraints to enable the consistent treatment of children. Method: An initial guideline containing 22 recommendations and statements was created from a management pathway generated by the CCLG/ PONF clinicians, supported by systematic reviews of the relevant literature, combined with a survey of current practice in the 21 CCLG centres, and audits from groups with an interest in this field. This was subjected to the first round of a Delphi survey of stakeholding clinicians (nurses, doctors, pharmacists and microbiologists) from each centre and related shared care hospitals. Results: One hundred and 41 responses were obtained, with 50% of principle treatment centres and shared care centres returning questionnaires. Of the 22 questions, 20 reached agreement (>80% agreed or strongly agreed) and only one had significant disagreement (>20%). A second round will be completed by April 2008. Conclusion: This paper will focus on the development of the guideline, sharing with participants the challenges of, and some solutions to, using the highly respected Delphi survey method. This is an excellent example of how the national multidisciplinary group can coordinate and champion change within the under-investigated area of children’s cancer supportive care.