Humans; Infant, Newborn; Critical Illness; Male; Professional-Family Relations; Communication; Qualitative Research; Interviews as Topic; Religion; Stress, Psychological; Infant, Premature; Father-Child Relations; *Intensive Care Units, Neonatal; *Fathers/px [Psychology]; Intensive Care Units, Neonatal/og [Organization & Administration]; *Internal-External Control
Description
OBJECTIVE: This qualitative study aimed at understanding the experiences of fathers of very ill neonates in the NICU., METHODS: Sixteen fathers of very ill and/or very preterm infants who had been in the NICU for >30 days were interviewed by a male physician. Fathers were asked about their level of comfort with or concerns about staff communication regarding their infant, about accessing information, and about more general perceptions of their experience in the neonatal intensive care unit. Interviews were audiotaped and transcribed for analysis. Coding used content analysis with construction of themes by 3 researchers., RESULTS: The overarching theme for fathers was a sense of lack of control. Their world view, as a "backdrop" theme, provided context for all of the themes. Four other interrelated subthemes were identified, including information; communication, particularly with the health care team; fathers' various roles; and external activities. Fathers reported that relationships with friends/family/health care team, receiving information consistently, and receiving short written materials on common conditions were ways of giving them support. The fathers said that speaking to a male physician was a positive and useful experience., CONCLUSIONS: Fathers experience a sense of lack of control when they have an extremely ill infant in the NICU. Specific activities help fathers regain a sense of control and help them fulfill their various roles of protectors, fathers, partners, and breadwinners. Understanding these experiences helps the health care team offer targeted supports for fathers in the NICU.
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OBJECTIVES: To evaluate the feasibility of a new approach to paediatric research whereby we involved children in analysing qualitative data, and to reflect on the involvement process. SETTING: This was a single-centre, qualitative study in the Netherlands. It consisted of research meetings with individual children at home (Phase I) or group meetings at school (Phase II). In Phase I, we identified themes from a video interview during five one-on-one meetings between a child co-researcher and the adult researcher. In Phase II, during two group meetings, we explored the themes in detail using fragments from 16 interviews. PARTICIPANTS: We involved 14 school children (aged 10 to 14 years) as co-researchers to analyse children's interviews about their experience while participating in medical research. Notes were taken, and children provided feedback. A thematic analysis was performed using a framework approach. RESULTS: All co-researchers identified themes. The time needed to complete the task varied, as did the extent to which the meetings needed to be structured to improve concentration. The children rated time investment as adequate and they considered acting as co-researcher interesting and fun, adding that they had learnt new skills and gained new knowledge. The experience also led them to reflect on health matters in their own lives. The adult researchers considered the process relatively time intensive, but the project did result in a more critical assessment of their own work. CONCLUSION: The new, two-phase approach of involving children to help analyse qualitative data is a feasible research method. The novelty lies in involving children to help identify themes from original interview data, thereby limiting preselection of data by adults, before exploring these themes in detail. Videos make it easier for children to understand the data and to empathise with the interviewees, and limits time investment.
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Preschool Child; Advance Care Planning; Bereavement; Caregivers; Child; Infant; Interviews as Topic; Male; Multimorbidity; Parents; Terminal Care
Description
Importance: Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course and timing of death; however, there is a paucity of literature that describes the experience of ACP from the perspective of bereaved family caregivers of CMC. Objective: To explore the experiences of bereaved family caregivers with ACP for CMC. Design, Setting, and Participants: This qualitative study included 12 interviews with 13 bereaved family caregivers of CMC whose deaths had occurred in the 5 years before study commencement (2013-2018). Participants were recruited at a single tertiary care pediatric center; CMC were treated by the Complex Care or Long-term Ventilation clinic in Toronto, Ontario, Canada. Data were collected from July to October 2018. Thematic analysis with an inductive approach was used. Exposures: Qualitative interviews were conducted using purposive sampling of bereaved family caregivers using semistructured interviews that were recorded and transcribed. Interviews were conducted until saturation was reached. Main Outcomes and Measures: Transcripts were analyzed to create themes that characterized caregiver experiences with ACP. Results: A total of 13 family caregivers were interviewed in 12 interviews, all of whom were parents (12 [92%] women, 1 [8%] man) of a deceased child (aged 7 months to 12 years). Themes were divided in the 3 following categories, which align with the Donabedian model for health service quality: (1) structure of care, (2) ACP process, and (3) end-of-life experience. Notable subthemes for this population included the importance of accounting for parental expertise in the child's care, recurrent experiences with life-threatening events, relative shock of the timing of death, and the multiple losses that caregivers experienced. Conclusions and Relevance: In this study, parental experiences revealed that there are key aspects of the structure of the child's care, process around ACP, and end-of-life care experiences that provide important reflections on ACP that warrant future study.
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Newborn Infant; Preschool Child; Academic Medical Centers; Adolescent; Attitude to Health; Child; Chronic Disease; Continuity of Patient Care; Health Knowledge, Attitudes, Practice; Health Services Accessibility; Infant; Interviews as Topic; Male; Parents; Patient Readmission; Qualitative Research
Description
OBJECTIVES: Children with medical complexity (CMC) have high readmission rates, but relatively little is known from the parent perspective regarding care experiences surrounding and factors contributing to readmissions. We aimed to elicit parent perspectives on circumstances surrounding 30-day readmissions for CMC. METHODS: We conducted 20 semistructured interviews with parents of CMC experiencing an unplanned 30-day readmission at 1 academic medical center between December 2016 and January 2018, asking about topics such as previous discharge experiences, medical services and resources, and home environment and social support. Interviews were recorded, professionally transcribed, and analyzed thematically by using a modified grounded theory approach. RESULTS: Children ranged in age from 0 to 15 years, with neurologic complex chronic conditions being predominant (35%). Although the majority of parents did not identify any factors that they perceived to have contributed to readmission, themes emerged regarding challenges associated with chronicity of care and transitions of care that might influence readmissions, including frequency of hospital use, symptom confusion, lack of inpatient continuity, resources needed but not received, and difficulty filling prescriptions. CONCLUSIONS: Parents identified multiple challenges associated with chronicity of medical management and transitions of care for CMC. Future interventions aiming to improve continuity and communication between admissions, ensure that home services are provided when applicable and prescriptions are filled, and provide comprehensive support for families in both the short- and long-term may help improve patient and family experiences while potentially decreasing readmissions.
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BACKGROUND: Children with life-limiting conditions have a high risk of colonisation with a multidrug-resistant organism (MDRO). To avoid the spread of hospital-aquired infections to other patients, children with a MDRO are moved to an isolated room or ward. However, such isolation prevents social participation, which may reduce the child's quality of life (QoL). To overcome this challenge of conflicting interests on a paediatric palliative care inpatient unit, a hygiene concept for patients colonised with MDRO, called PALLINI, was implemented. PALLINI advises that, instead of isolating the affected children, strict barrier nursing should be used. AIM: To identify the impact of a complex hygiene concept on children's and parents' QoL and social participation. METHODS: Cross-sectional mixed-methods research approach, comprising semi-structured interviews with parents and staff members, and a QoL-questionnaire focusing on the child which was completed by parents. FINDINGS: In paediatric patients with life-limiting conditions who have MDRO colonisation, using a complex hygiene protocol resulted in both benefits and barriers to social participation. However, the child's QoL did not appear to be affected. CONCLUSION: All staff members and families have to be familiar with the hygiene concept and the concept has to be self-explanatory and easy to apply.
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Welcoming expertise: Bereaved parents' perceptions of the parent-healthcare provider relationship when a critically ill child is admitted to the paediatric intensive care unit
Adult; Bereavement; Child; child and family wishes; Critical Illness -- Singapore; Death; Female; Grounded theory; Grounded Theory; health personnel attitude; Hospital Mortality; Hospitalized; Humans; Intensive care unit-paediatric; Intensive care units pediatric; Interviews as Topic; Male; Nurse; Parents; Parents/*psychology; Pediatric; Professional-Family Relations; Victoria
Description
BACKGROUND: Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child's well-being, parents must navigate both a challenging environment and numerous new relationships with healthcare staff. How parents form relationships with staff and how they perceive both their own and the healthcare providers' roles in this early stage of their paediatric intensive care journey is currently unknown. PURPOSE: This paper explores bereaved parents' perceptions of their role and their relationships with healthcare providers when their child is admitted to the intensive care unit, as part of a larger study exploring their experiences when their child dies in intensive care. METHODS: A constructivist grounded theory approach was utilised to recruit 26 bereaved parents from 4 Australian intensive care units. Parents participated in audio-recorded, semi-structured interviews lasting 90-150min. All data were analysed using the constant comparative analysis processes, supported by theoretical memos. RESULTS: Upon admission, parents viewed healthcare providers as experts, both of their child's medical care and of the hospital system. This expertise was welcomed, with the parent-healthcare provider relationship developing around the child's need for medical care. Parents engaged in 2 key behaviours in their relationships with staff: prioritising survival, and learning 'the system'. Within each of these behaviours are several subcategories, including 'Stepping back', 'Accepting restrictions' and 'Deferring to medical advice'. CONCLUSIONS: The relationships between parents and staff shift and change across the child's admission and subsequent death in the paediatric intensive care unit. However, upon admission, this relationship centres around the child's potential survival and their need for medical care, and the parent's recognition of the healthcare staff as experts of both the child's care and the hospital system.
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Adolescent; Adult; Baccalaureate; Clinical Competence; Colombia; Education; Female; Hospice and Palliative Care Nursing/ed [Education]; Humans; Interviews as Topic; Male; Nursing; Students; Surveys and Questionnaires; Young Adult
Description
AIM: Identify the palliative care learning needs of healthcare students and determine the acceptability of an innovative learning strategy for palliative care named competencia para cuidar en el hogar-paliar (CUIDAR-PALIAR) aimed to increase students' competencies. METHODS: A single-group mixed methods design was used. A questionnaire was designed and semi-structured interviews were used to determine the palliative care competencies of undergraduate students; 90 students participated in the strategy. FINDINGS: The learning needs of students are: approaches to death and loss, how to intervene with the patient's family, understanding of the palliative care context, management of the patient's pain and symptoms and the development of therapeutic communication skills. CONCLUSION: The strategy is highly accepted by students, and statistically significant increases in palliative care were observed before and after the intervention. These preliminary results justify future interventions due to the potential effect of the strategy CUIDAR-PALIAR in the development of competencies for palliative care in undergraduate students.
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Care coordination;Communication;complex chronic conditions;critical care;Critical Care/organization & administration;family;Female;health care quality;Humans;Intensive Care Units;Interviews as Topic;Length of Stay;Male;Neonatal/organization & administration;Palliative care;Palliative Care/organization & administration;Patient Care Planning/organization & administration;Pediatric intensive care unit;Pediatric/organization & administration;Pediatricians/psychology;Professional Family Relations;Qualitative Research
Description
BACKGROUND: Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes, yet there remains a lack of information about indicators for specialty-level palliative care involvement in this setting. OBJECTIVE: To describe neonatal and pediatric critical care physician perspectives on indicators for when and why to involve palliative care consultants. METHODS: Semistructured interviews were conducted with 22 attending physicians from neonatal, pediatric, and cardiothoracic ICUs in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analyses. RESULTS: We identified 2 themes related to the indicators for involving palliative care consultants: (1) palliative care expertise including support and bridging communication and (2) organizational factors influencing communication including competing priorities and fragmentation of care. CONCLUSIONS: Palliative care was most beneficial for families at risk of experiencing communication problems that resulted from organizational factors, including those with long lengths of stay and medical complexity. The ability of palliative care consultants to bridge communication was limited by some of these same organizational factors. Physicians valued the involvement of palliative care consultants when they improved efficiency and promoted harmony. Given the increasing number of children with complex chronic conditions, it is important to support the capacity of ICU clinical teams to provide primary palliative care. We suggest comprehensive system changes and critical care physician training to include topics related to chronic illness and disability.
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Health Personnel/es [Ethics]; Health Personnel/px [Psychology]; Intensive Care Units; Parents/px [Psychology]; Withholding Treatment/es [Ethics]; Decision Making/es [Ethics]; France; Humans; Infant; Interviews as Topic; Morals; Neonatal/es [Ethics]; Newborn
Description
Withdrawing Artificial Nutrition and Hydration (WANH) in the neonatal intensive care units (NICUs) has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the stakeholders' experience is, and whether they consider it ethically appropriate. In order to contribute to the debate, we initiated a study in 2009 to evaluate parental and health care professionals (HCP) perspectives, after they experienced WAHN for a newborn. The study included 25 cases from 5 different clinical neonatology departments. We interviewed both the parents and some of the HCP who cared for the baby, at least 6 months after this latter deceased. We proceeded through in-depth individual qualitative interviews. Content was analyzed for themes and patterns that emerged from the data. Some parents expressed that WANH offered an opportunity to the family to spend a few demedicalized days with the baby before she dies, without any tubes and machines, and to be well supported by the HCP during this palliative stage. But others evaluated the practice in retrospect as a terrible ordeal. All said that, at least, the time of waiting for death to ensue should not last too long. After a few days, it becomes unbearable because of the transformation of the baby's appearance and because they, as parents, began to wonder if she was not dying from starvation rather than from her initial disease. An important proportion of HCP also expressed some kind of ethical unease. This was due to the psychological violence involved in the decision for a human being to stop feeding a little one, and also to the difficulty to deal with the fundamental intention behind the decision of WANH: indeed, could it be claim that it does not presuppose the intention of provoking the infant's death? The discussion focuses on the point to know if WANH can be considered as a source of progress from an ethical point of view, particularly in comparison with earlier practices-that in France could involve active euthanasia by lethal injection. We argue that when HCP are merely focused on avoiding that WAHN could be construed as a way of intending to hasten the baby's death, the practice is at risk to be implemented in a way that becomes ethically counterproductive. Focusing on this intention easily distract the clinical teams from what should be their ultimate concern, namely the baby's comfort during the dying process, as well as the support owned to her parents. To conclude, we suggest that the ethical priorities, when WANH is decided, should be the support due to the patient and her family on the one hand, and, on the other hand to implement it in such a way that at least the baby seems to have died of her initial disease and never of starvation. This means that HCP have a duty to control the timing of death, even though this might be incompatible with the worry to avoid the intention of hastening the baby's death.
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OBJECTIVE: Because children with medical complexity (CMC) display very different health trajectories, needs, and resource utilization than other children, it is unclear how well traditional conceptions of population health apply to CMC. We sought to identify key health outcome domains for CMC as a step toward determining core health metrics for this distinct population of children. METHODS: We conducted and analyzed interviews with 23 diverse national experts on CMC to better understand population health for CMC. Interviewees included child and family advocates, health and social service providers, and research, health systems, and policy leaders. We performed thematic content analyses to identify emergent themes regarding population health for CMC. RESULTS: Overall, interviewees conveyed that defining and measuring population health for CMC is an achievable, worthwhile goal. Qualitative themes from interviews included: 1) CMC share unifying characteristics that could serve as the basis for population health outcomes; 2) optimal health for CMC is child specific and dynamic; 3) health of CMC is intertwined with health of families; 4) social determinants of health are especially important for CMC; and 5) measuring population health for CMC faces serious conceptual and logistical challenges. CONCLUSIONS: Experts have taken initial steps in defining the population health of CMC. Population health for CMC involves a dynamic concept of health that is attuned to individual, health-related goals for each child. We propose a framework that can guide the identification and development of population health metrics for CMC.
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BACKGROUND: Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased perinatal risk, with higher rates of perinatal mortality than in singleton pregnancy. OBJECTIVES: To date, few studies have examined the effect of the loss of one twin diagnosed with a congenital abnormality during pregnancy. This study aims at gaining insight into parents' views to explore the impact of death of one twin in the perinatal period. DESIGN: A qualitative study was undertaken by utilizing interpretative phenomenological analysis. Nine parents who have experienced perinatal loss, all of whom had a prenatal diagnosis of congenital abnormality, participated in in-depth semi-structured interviews. RESULTS: Parents recounted how distressed they were when initially informed that there was a complication. On diagnosis, parents began a complex palliative journey, proceeding in the pregnancy and grieving one baby while trying to ensure the welfare of the co-twin. As parents were encouraged to focus on the "normal" twin, they felt their opportunity to grieve was diminished. It was important that the surviving twin would be identified as a twin and know of their sibling. However, parents conveyed feelings of deep sadness, because this was also a reminder that one twin would always be missing. CONCLUSIONS: Parents were not prepared for the complications they experienced in pregnancy. Clear and appropriate information in relation to perinatal palliative care should be provided to parents in twin pregnancies discordant for fetal abnormality.
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European Journal Of Oncology Nursing: The Official Journal Of European Oncology Nursing Society
Date
2013
Subject
Child; Female; Humans; Male; Neoplasms; Terminal Care; Terminally Ill; Adult; Parent-Child Relations; Parents; Interviews as Topic; Attitude to Death; Qualitative Research; Spain; Stress; quality of life; Adaptation; Psychological
Description
PURPOSE: Suffering is a complex multifaceted phenomenon, which has received limited attention in relation to children with terminal illness. As part of a wider study we interviewed parents of children with terminal illness to elicit their perspectives on suffering, in order to provide initial understanding from which to develop observational indicators and further research. METHODS: Qualitative descriptive study with semi-structured interviews made "ad hoc". Selection through deliberate sampling of mothers and fathers of hospitalised children (0-16 years old) with a terminal illness in Granada (Spain). KEY RESULTS: 13 parents were interviewed. They described children's suffering as manifested through sadness, apathy, and anger towards their parents and the professionals. The isolation from their natural environment, the uncertainty towards the future, and the anticipation of pain caused suffering in children. The pain is experienced as an assault that their parents allow to occur. CONCLUSIONS: The analysis of the interview with the parents about their perception of their ill children's suffering at the end of their lives is a valuable source of information to consider supportive interventions for children and parents in health care settings. An outline summary of the assessed aspects of suffering, the indicators and aspects for health professional consideration is proposed.
2013-12
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adolescent; Cross-Sectional Studies; Female; Humans; Male; Neoplasms; Adult; Interviews as Topic; Questionnaires; Aged; Middle Aged; Patient Satisfaction; Patient Education as Topic; Denmark; 80 and over
Description
OBJECTIVES: To validate five items (CPWQ-inf) regarding satisfaction with information provided to cancer patients from health care staff, assess the prevalence of dissatisfaction with this information, and identify factors predicting dissatisfaction. METHODS: The questionnaire was validated by patient-observer agreement and cognitive interviews. The prevalence of dissatisfaction was assessed in a cross-sectional sample of all cancer patients in contact with hospitals during the past year in three Danish counties. RESULTS: The validation showed that the CPWQ performed well. Between 3 and 23% of the 1490 participating patients were dissatisfied with each of the measured aspects of information. The highest level of dissatisfaction was reported regarding the guidance, support and help provided when the diagnosis was given. Younger patients were consistently more dissatisfied than older patients. CONCLUSIONS: The brief CPWQ performs well for survey purposes. The survey depicts the heterogeneous patient population encountered by hospital staff and showed that younger patients probably had higher expectations or a higher need for information and that those with more severe diagnoses/prognoses require extra care in providing information. PRACTICAL IMPLICATIONS: Four brief questions can efficiently assess information needs. With increasing demands for information, a wide range of innovative initiatives is needed.
2013-11
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Why does it happen like this?' Consulting with users and providers prior to an evaluation of services for children with life limiting conditions and their families
Creator
Hunt A; Brown E; Coad J; Staniszewska S; Hacking S; Chesworth B; Chambers L
adolescent; Child; Humans; Palliative Care; referral and consultation; Family; Interviews as Topic; disabled children; Health Services Needs and Demand; Health Services Research; Child Health Services; Focus Groups; Children’s participation; quality of care
Description
Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and local professionals to gain a more informed picture of issues affecting them prior to preparing a bid to evaluate services in the area. Multiple methods included focus groups, face-to-face and telephone interviews and participatory activities. Recordings and products from activities were analysed for content to identify areas of relevance and concern. An overarching theme from parents was 'Why does it happen like this?' Services did not seem designed to meet their needs. Whilst children and young people expressed ideas related to quality of environment, services and social life, professionals focused on ways of meeting the families' needs. The theme that linked families' concerns with those of professionals was 'assessing individual needs'. Two questions to be addressed by the evaluation are (1) to what extent are services designed to meet the needs of children and families and (2) to what extent are children, young people and their families consulted about what they need? Consultations with families and service providers encouraged us to continue their involvement as partners in the evaluation.
2015-09
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Mitochondrial disease: needs and problems of children, their parents and family. A systematic review and pilot study into the need for information of parents during the diagnostic phase.
Creator
Noorda G; Hermans-Peters M; Smeitink JA; van Achterberg T; Kemps H; Goverde W; Schoonhoven L
Child; Humans; Adult; Parent-Child Relations; Interviews as Topic; Questionnaires; Pilot Projects; Research Design; Longitudinal Studies; Patient Selection; Reproducibility of Results; Mitochondrial Diseases/diagnosis/psychology; Parents/education
Description
OBJECTIVE: Firstly, this paper aims to systematically review the mitochondrial disease literature to identify studies assessing the needs and problems in the daily life of children with a mitochondrial disease and of their parents and family. The second aim is to provide more insight into the need for information by the parents of these children during the diagnostic process while in hospital. DESIGN: A systematic review and a pilot study, using a qualitative (focus group interviews; n = 7) and a quantitative (questionnaire; n = 37) design. RESULTS: Mothers reported great socioeconomic and psychoaffective strain and showed psychopathological symptoms in the two studies published with respect to this topic. The pilot study showed that parents considered an honest and interested attitude of the person who is giving the information as most important. Furthermore they wanted oral and written information and a central point where they could go with their questions at any time they felt the need. The need for information increased during the four phases of the diagnostic process and was highest in the fourth phase. CONCLUSIONS: The few studies found in the review, combined with expectations that having a mitochondrial disease must have a great impact on these children and their parents and family, call for more research in their needs and problems. Furthermore, there are gaps in the current information provision to parents of these children. A better understanding of the needs and problems of these children and their family is essential for effective care planning and might result in an improved quality of life.
2007
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Female; Humans; Male; Adult; Interviews as Topic; Questionnaires; Aged; Middle Aged; Attitude to Death; Terminally Ill/psychology; Neoplasms/psychology; Acquired Immunodeficiency Syndrome/psychology; San Francisco; New York City
Description
The narrative responses of 32 people with AIDS or cancer with survival prognoses of 6 months to a year to monthly interview questions about their daily lives were analysed with a team-based qualitative methodology. Two groups emerged: (a) a Maintained Lifeworld Group characterised by one or more of the following: continued engagement with family, friends, and community; the ability to relinquish untenable goals and substitute new, realistic ones; engagement in spirituality and a spiritual practice; and, (b) a Lifeworld Interrupted Group characterised by one or more of the following: relocation just before or during the study, cognitive impairment, commitment to untenable goals, ongoing substance abuse. Understanding how people with a terminal illness can maintain a lifeworld and experience well-being while also managing the physical challenges of their illness could help inform the support offered by professional and family caregivers to improve care recipients' quality of life.
2009
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Humans; Personal Autonomy; Interviews as Topic; Attitude to Death; Communication; Qualitative Research; DNAR; Computer-Assisted; decision making; Terminal Care; Terminal Care/es [Ethics]; Advance Directives/es [Ethics]; Child; Patient Participation/mt [Methods]; Advance Care Planning/es [Ethics]; Patient Participation/td [Trends]; Terminal Care/td [Trends]
Description
2010
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Parents' perspectives on physician-parent communication near the time of a child's death in the pediatric intensive care unit
Creator
Meert KL; Eggly S; Pollack M; Anand KJ; Zimmerman J; Carcillo J; Newth CJ; Dean JM; Willson DF; Nicholson C; National Institute of Child Health; Human Development Collaborative Pediatric Critical Care Research Network
Child; Female; Humans; Male; United States; Intensive Care Units; Adult; Interviews as Topic; Hospital Mortality; Prognosis; Middle Aged; Professional-Family Relations; Communication; Death; Physician's Role; Truth Disclosure; Hospitals; Pediatric; Preschool; bereavement; Parents/psychology
Description
OBJECTIVE: Communicating bad news about a child's illness is a difficult task commonly faced by intensive care physicians. Greater understanding of parents' scope of experiences with bad news during their child's hospitalization will help physicians communicate more effectively. Our objective is to describe parents' perceptions of their conversations with physicians regarding their child's terminal illness and death in the pediatric intensive care unit (PICU). DESIGN: A secondary analysis of a qualitative interview study. SETTING: Six children's hospitals in the National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. PARTICIPANTS: Fifty-six parents of 48 children who died in the PICU 3-12 months before the study. INTERVENTIONS: Parents participated in audio recorded semistructured telephone interviews. Interviews were analyzed using established qualitative methods. MEASUREMENTS AND MAIN RESULTS: Of the 56 parents interviewed, 40 (71%) wanted to provide feedback on the way information about their child's terminal illness and death was communicated by PICU physicians. The most common communication issue identified by parents was the physicians' availability and attentiveness to their informational needs. Other communication issues included honesty and comprehensiveness of information, affect with which information was provided, withholding of information, provision of false hope, complexity of vocabulary, pace of providing information, contradictory information, and physicians' body language. CONCLUSIONS: The way bad news is discussed by physicians is extremely important to most parents. Parents want physicians to be accessible and to provide honest and complete information with a caring affect, using lay language, and at a pace in accordance with their ability to comprehend. Withholding prognostic information from parents often leads to false hopes and feelings of anger, betrayal, and distrust. Future research is needed to investigate whether the way bad news is discussed influences psychological adjustment and family functioning among bereaved parents.
2008
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Child; Female; Humans; Male; Intensive Care Units; Interviews as Topic; Death; Hospitals; Pediatric; Parents/psychology; Patients' Rooms; Environment Design
Description
OBJECTIVE: Many childhood deaths in the United States occur in intensive care settings. The environmental needs of parents experiencing their child's death in a pediatric intensive care unit must be understood to design facilities that comfort at the time of death and promote healing after loss. The purpose of this study is to explore parents' environmental needs during their child's hospitalization and death in the pediatric intensive care unit. DESIGN: Descriptive qualitative study. SETTING: A university-affiliated children's hospital. PARTICIPANTS: Thirty-three parents of 26 children who died in a pediatric intensive care unit. INTERVENTIONS: Semistructured, in-depth, videotaped interviews were conducted with parents 2 yrs after their child's death. Interviews were analyzed by an interdisciplinary research team using established qualitative methods. MEASUREMENTS AND MAIN RESULTS: Environmental themes identified through parent interviews included 1) places remembered, 2) spatial characteristics, 3) services for daily living, 4) parent caregiving, 5) access, and 6) presence of people. Places remembered by parents in most detail included the pediatric intensive care unit patient rooms and waiting room. Spatial characteristics pertaining to these places included the need for privacy, proximity, adequate space, control of sensory stimuli, cleanliness, and safety. Parents needed facilities that enabled self-care such as a place to eat, shower, and sleep. Parents also needed access to their child and opportunities to participate in their child's care. Parents described the physical presence of people, such as those who provide professional and personal support, as another important environmental need. CONCLUSIONS: The pediatric intensive care unit environment affects parents at the time of their child's death and produces memories that are vivid and long lasting. Positive environmental memories can contribute to comfort during bereavement whereas negative memories can compound an already devastating experience. Parents' perspectives of the pediatric intensive care unit environment can provide insight for adapting existing spaces and designing new facilities.
2008
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Child; Humans; Interviews as Topic; Hospitals; Pediatric; adolescent; Adolescent Transitions; Continuity of Patient Care/organization & administration; Adolescent Medicine; Delivery of Health Care/organization & administration; Chronic Disease/epidemiology/therapy; New South Wales/epidemiology
Description
AIM: With increasing survival rates for chronic childhood illness, there has been an increasing focus on the transition of clinical care from paediatric to adult services. Data regarding patient numbers are essential for strategic planning and for optimal management. We report on a data collection exercise from the New South Wales Greater Metropolitan Clinical Taskforce Transition Program. METHODS: Data were collected between August 2004 and October 2005 through face-to-face interviews with over 200 clinicians in 68 clinical services in tertiary paediatric hospitals in New South Wales, providing information on approximately 4200 patients. RESULTS: Sixty-eight services kept a database on patients with chronic illness but less than half were electronic. Eight services (12%) could specifically identify patients in the active phase of transition on their databases. The five most prevalent clinical groups requiring transition to adult specialist health care (excluding cerebral palsy and developmental disability) were diabetes, other endocrinology, neurology, spina bifida and gastroenterology. CONCLUSIONS: There are large numbers of young people with chronic illness and disability who need effective transition to long-term adult care. This study has enabled the identification of paediatric aspects of the transition process that require attention.
2008
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Missed opportunities-adolescents with a chronic condition (insulin-dependent diabetes mellitus) describe their cigarette-smoking trajectories and consider health risks
Female; Humans; Male; Adult; Attitude to Health; Parents; Interviews as Topic; Peer Group; adolescent; Adolescent Transitions; Chronic disease; Adolescent Behavior/psychology; Diabetes Mellitus; Type 1/psychology; Smoking Cessation/psychology; Smoking/adverse effects/prevention & control/psychology; Tobacco Use Disorder/psychology
Description
AIM: To enhance our knowledge on why adolescents with a chronic condition (insulin-dependent diabetes mellitus, IDDM) choose to smoke despite possible awareness of health risks. METHODS: Twelve patients aged 15-20 with IDDM who smoked cigarettes volunteered to participate in qualitative interviews. The results were analyzed with content analysis according to Miles and Huberman 1994. RESULTS: One set confirmed what is earlier known on cigarette smoking among adolescents, such as plain exploring, needs to conform with group norms, identity needs and denial of risks. Other themes gave new insights. One was the emotional attitudes-or lack of emotions-expressed by important others, which exerted strong influences on the smoking trajectories. These emotions affected both initiation and motivation for quitting cigarette smoking and seemed crucial as means of meaningful communications concerning smoking. One theme was a flow path of cigarette smoking, which demonstrated opportunities for secondary prevention. Finally, developmental reasons for smoking and motivation for quitting could be described. CONCLUSIONS: There are several windows of opportunities to lower the risk of adolescents with IDDM and other chronic conditions from becoming and remaining smokers, as reported by young people themselves.
2007
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Female; Humans; Male; Young Adult; Palliative Care; Terminal Care; Family; Adult; Interviews as Topic; Aged; Middle Aged; Physicians; Medical Oncology; 80 and over; advance care planning; DNAR; Advance Directives; Physician-Patient Relations; Patient Preference; Neoplasms/px [Psychology]
Description
PURPOSE: Many seriously ill patients with cancer do not discuss prognosis or advance directives (ADs), which may lead to inappropriate and/or unwanted aggressive care at the end of life. Ten years ago, patients with cancer said they would not like to discuss ADs with their oncologist but would be willing to discuss them with an admitting physician. We assessed whether this point of view still held., PATIENTS AND METHODS: Semi-structured interviews were conducted with 75 consecutively admitted patients with cancer in the cancer inpatient service., RESULTS: Of those enrolled, 41% (31 of 75) had an AD. Nearly all (87%, 65 of 75) thought it acceptable to discuss ADs with the admitting physician with whom they had no prior relationship, and 95% (62 of 65) thought that discussing AD issues was very or somewhat important. Only 7% (5 of 75) had discussed ADs with their oncologist, and only 23% (16 of 70) would like to discuss ADs with their oncologist. When specifically asked which physician they would choose, 48% (36 of 75) of patients would prefer their oncologist, and 35% (26 of 75) would prefer their primary care physician., CONCLUSION: Fewer than half of seriously ill patients with cancer admitted to an oncology service have an AD. Only 23% (16 of 70) would like to discuss their ADs with their oncologist but nearly all supported a policy of discussing ADs with their admitting physician. However, fully 48% (36 of 75) actually preferred to discuss advance directives with their oncologist if AD discussion was necessary. We must educate patients on why communicating their ADs is beneficial and train primary care physicians, house staff, hospitalists, and oncologists to initiate these difficult discussions.
2010
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The objective of this study was to provide a preliminary description of trajectories of life-limiting conditions (LLCs) using qualitative experiential data. Semi-structured interviews were conducted with families of children with LLCs, selected to encompass all Association for Children's Palliative Care (ACT)/Royal College of Paediatrics and Child Health (RCPCH) categories, using a schedule developed from focus groups of professionals. Thirty out of 76 families agreed to participate. Four of these were unsuitable. In nine out of 26 families, their child had died. In eight out of the 26, two individuals were interviewed. Twenty-four mothers, nine fathers, one sibling and two foster-carers were interviewed in total. The interview schedule was developed from data from four themed focus groups, comprising 25 professionals from 14 backgrounds. Thirty-four milestones in five phases were identified: Diagnosis, Loss of normality, Adjusting to new normality, Palliative phase and Death. Many milestones were common to all categories, suggesting that the ACT/RCPCH system encompasses related conditions. Others occurred in only some, suggesting trajectories in the categories are distinct. Significant themes emerging from qualitative data were: becoming expert in their child, concerns about service provision, information needs and relationships with health professionals. By presenting qualitative descriptive data regarding the lived experience of families of children with LLCs, this study provides preliminary evidence that the ACT/RCPCH categories are suitable tools for research and service development.;
2010-12
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Child; Female; Humans; infant; Male; Interviews as Topic; Wisconsin; Preschool; PedPal Lit; infant; Newborn; DNAR; Parents/psychology; DNAR Outcomes; Pediatrics; Advance Care Planning/og [Organization & Administration]; Parents/px [Psychology]; 7 died at home and 2 died at a hospital. Eight of the children's advance directives were followed during the dying process; 9 are deceased; Advance Care Planning/organization & administration; including preserving their child's quality of life and avoiding unnecessary suffering.; individuals in the community raised concerns about the child's advance directive. CONCLUSIONS: Even though the topic of their child's death is difficult; the majority of the interviewed parents found the advance care planning process for the child helpful because it assured the best care for the child; while 1 was not. Th irteen parents were interviewed. Twelve stated that the process of advance care planning benefited their children and their family. Rarely
Description
OBJECTIVE: This study describes the process and population involved in pediatric advance care planning at one Midwest medical center. The outcomes and the parents' perceptions of this planning are also discussed., METHODS: Pediatric patients with advance directives were identified from ethics consultations records. Information about the type of advance directive, the patient's medical condition and care received was obtained from the medical records. Parents of the children were then contacted and interviewed in regard to the advance care planning process done for their child. The interviews were audiotaped and transcribed. Transcribed interviews were reviewed and themes were identified., RESULTS: Seventeen children from 16 families were included in the study. Almost all of the patients had progressive disorders other than cancer. Of the 17 children, 9 are deceased, 7 died at home and 2 died at a hospital. Eight of the children's advance directives were followed during the dying process, while 1 was not. Thirteen parents were interviewed. Twelve stated that the process of advance care planning benefited their children and their family. Rarely, individuals in the community raised concerns about the child's advance directive., CONCLUSIONS: Even though the topic of their child's death is difficult, the majority of the interviewed parents found the advance care planning process for the child helpful because it assured the best care for the child, including preserving their child's quality of life and avoiding unnecessary suffering.
2005
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Child; Female; Humans; Male; Interviews as Topic; California; Cost of Illness; Health Care Costs; Chronic Disease/economics; disabled children; San Francisco; New York City; Home Care Services/economics; Caregivers/economics; HIV Infections/economics/nursing; Home Nursing/economics
Description
OBJECTIVES: We compared types, amounts, and costs of home care for children with HIV and chronic illnesses, controlling for the basic care needs of healthy children to determine the economic burden of caring for and home care of chronically ill children. METHODS: Caregivers of 97 HIV-positive children, 101 children with a chronic illness, and 102 healthy children were surveyed regarding amounts of paid and unpaid care provided. Caregiving value was determined according to national hourly earnings and a market replacement method. RESULTS: Chronically ill children required significantly more care time than HIV-positive children (7.8 vs 3.9 hours per day). Paid care accounted for 8% to 16% of care time. Annual costs were $9300 per HIV-positive child and $25,900 per chronically ill child. Estimated national annual costs are $86.5 million for HIV-positive children and $155 to $279 billion for chronically ill children. CONCLUSIONS: Informal caregiving represents a substantial economic value to society. The total care burden among chronically ill children is higher than that among children with HIV.
2005
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Siblings' needs and issues when a brother or sister dies of cancer.
Creator
Nolbris M; Hellstrom AL
Publisher
Journal Of Pediatric Oncology Nursing
Date
2005
Subject
adolescent; Child; Female; Humans; Male; Neoplasms; Adult; Interviews as Topic; Attitude to Death; Siblings; Qualitative Research; Sibling Relations; PedPal Lit; IM; Grief; sibling bereavement; N; Adolescent AdultAttitude to Death Child FemaleGrief Humans Interviews MaleNeoplasms/psychology Qualitative Research Research Support; Non-U.S. Gov'tSibling Relations Siblings/psychology
Description
To explore siblings'needs and issues when a brother or sister dies of cancer, interviews were conducted with 10 surviving children and young adults. The siblings expressed dissatisfaction with the information they had received and said that they had not felt involved in the dying process with the exception of the terminal period. The siblings stated that their dissatisfaction would have been reduced if doctors and nurses had provided continuous information and support. Loneliness, anxiety, anger, and jealousy were common feelings that they expressed. Friends and school were important to the siblings, representing a normal environment free from the domination of sickness. The siblings also expressed that they needed to mourn in their own way including periods of time when they did not mourn. The absence of the dead sibling was felt particularly during family celebrations. The siblings continued to have special memories and objects, and all still included the dead sibling as a member in the family.
2005-08
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Female; Humans; Male; Terminally Ill; Cohort Studies; Interviews as Topic; Aged; Death; Activities of Daily Living; Frail Elderly; Epidemiologic Methods; Multiple Organ Failure/physiopathology; Neoplasms/physiopathology; Sudden
Description
CONTEXT: Clinicians have observed various patterns of functional decline at the end of life, but few empirical data have tested these patterns in large populations. OBJECTIVE: To determine if functional decline differs among 4 types of illness trajectories: sudden death, cancer death, death from organ failure, and frailty. DESIGN, SETTING, AND PARTICIPANTS: Cohort analysis of data from 4 US regions in the prospective, longitudinal Established Populations for Epidemiologic Studies of the Elderly (EPESE) study. Of the 14 456 participants aged 65 years or older who provided interviews at baseline (1981-1987), 4871 died during the first 6 years of follow-up; 4190 (86%) of these provided interviews within 1 year before dying. These decedents were evenly distributed in 12 cohorts based on the number of months between the final interview and death. MAIN OUTCOME MEASURES: Self- or proxy-reported physical function (performance of 7 activities of daily living [ADLs]) within 1 year prior to death; predicted ADL dependency prior to death. RESULTS: Mean function declined across the 12 cohorts, simulating individual decline in the final year of life. Sudden death decedents were highly functional even in the last month before death (mean [95% confidence interval [CI]] numbers of ADL dependencies: 0.69 [0.19-1.19] at 12 months before death vs 1.22 [0.59-1.85] at the final month of life, P =.20); cancer decedents were highly functional early in their final year but markedly more disabled 3 months prior to death (0.77 [0.30-1.24] vs 4.09 [3.37-4.81], P<.001); organ failure decedents experienced a fluctuating pattern of decline, with substantially poorer function during the last 3 months before death (2.10 [1.49-2.70] vs 3.66 [2.94-4.38], P<.001); and frail decedents were relatively more disabled in the final year and especially dependent during the last month (2.92 [2.24-3.60] vs 5.84 [5.33-6.35], P<.001). After controlling for age, sex, race, education, marital status, interval between final interview and death, and other demographic differences, frail decedents were more than 8 times more likely than sudden death decedents to be ADL dependent (OR, 8.32 [95% CI, 6.46-10.73); cancer decedents, one and a half times more likely (OR, 1.57 [95% CI, 1.25-1.96]); and organ failure decedents, 3 times more likely (OR, 3.00 [95% CI, 2.39-3.77]). CONCLUSIONS: Trajectories of functional decline at the end of life are quite variable. Differentiating among expected trajectories and related needs would help shape tailored strategies and better programs of care prior to death.
2003
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Child; Humans; Data Collection; Interviews as Topic; Questionnaires; Attitude to Death; Sweden; Research; Ethics; bereavement; Death and Euthanasia; Parents/psychology; Biomedical and Behavioral Research
Description
2004
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Female; Humans; Male; Physician-Patient Relations; Attitude of Health Personnel; Interviews as Topic; Qualitative Research; Oregon; Suicide; Physicians/px [Psychology]; Suicide; Assisted/es [Ethics]; Assisted/lj [Legislation & Jurisprudence]; Assisted/px [Psychology]; Physician Assisted Dying PAD; Right to Die/lj [Legislation & Jurisprudence]
Description
In 1997, the Oregon Death with Dignity Act was enacted, allowing physicians to prescribe lethal dosages of medication to competent, terminally ill patients who request them. To improve our understanding of physicians' reactions to requests for assisted suicide, we performed semistructured interviews of 35 Oregon physicians who had received requests from patients. Interviews were completed in 2000, and audiotaped, transcribed, and analyzed using qualitative techniques. Requests for assisted suicide had a powerful impact on physicians and their practices. Physicians often felt unprepared, and experienced apprehension and discomfort before and after receiving requests. Prominent sources of discomfort included concerns about adequately managing symptoms and suffering, not wanting to abandon patients, and incomplete understanding of patients' preferences, especially when physicians did not know patients well. Participation in assisted suicide required a large investment of time and was emotionally intense. Regardless of whether they prescribed or not, physicians did not express major regrets about their decisions. Requests often facilitated discussion of important issues, and many physicians felt that the process increased their confidence and assertiveness in discussing end-of-life issues with other patients. Physicians rarely sought support from colleagues; instead, they tended to discuss emotional aspects of their experiences with their spouses.
2004
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Female; Humans; Male; Adolescent Psychology; Great Britain; Adult; Attitude to Health; Interviews as Topic; Age Factors; Qualitative Research; Continuity of Patient Care; Professional-Patient Relations; adolescent; Adolescent Transitions; social support; Patient Transfer; Adolescent Health Services/organization & administration; Chronic Disease/psychology/therapy
Description
Transition is a process that attends to the medical, psychosocial and educational needs of young people as they transfer to adult-orientated care. With a growing population of adolescents surviving with chronic illness well into adulthood, it is remarkable that empirical research has paid little attention to transition. This qualitative study examined the attitudes of young people with chronic illness who were facing transition, considering what young people wanted from a transition service and the ways in which provision could be improved from a service-user's perspective. A purposive sample of seven adolescents (aged 14-17) attending a hospital youth club were interviewed. To increase the likelihood of successful transition, strategies need to be informal, flexible, highly individualized and prepare adolescents steadily for adult services.
2004
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Female; Humans; Male; Adult; Health Care Surveys; Interviews as Topic; Questionnaires; Middle Aged; Continuity of Patient Care; adolescent; Adolescent Transitions; Cystic Fibrosis/therapy; Adolescent Health Services/organization & administration; Patient Satisfaction/statistics & numerical data
Description
Although general principles guiding the transition of individuals with chronic illness from pediatric to adult care have been established, guidelines specific for the transition of individuals with cystic fibrosis (CF) have not. To aid in the development of CF-specific transition guidelines, an anonymous pretransition questionnaire and posttransition interview were used to assess the concerns and expectations of 60 CF patients and their parents as they went through the transition from pediatric to adult care. Along with demographic and clinical information, respondents were asked to rate on a scale of 1-5 their general attitude toward, or level of concern on 22 questions involving transition concerns, adult program expectations, and general view of transition. The two most important concerns identified by patients prior to transition to adult care were potential exposure to infection (3.4 +/- 1.3) and having to leave their previous caregivers (3.4 +/- 1.0). Introduction to the adult CF team prior to transition was associated with significantly lower levels of concern in all areas, particularly about having to leave previous caregivers (3.9 +/- 0.7 vs. 2.5 +/- 0.6, P < 0.004). Age, gender, severity of lung disease, and age at diagnosis were not predictive of level of concern for any area. Parents' most significant concern was ability of their child to care for their CF independently, a concern their children did not share (4.0 +/- 1.1 vs. 1.5 +/- 0.5, P < 0.0001). As their most important expectations for the adult program, patients identified ready phone access to a nurse (4.9 +/- 0.6) and education about adult CF issues (4.6 +/- 0.7). The overall attitude toward the development of an adult CF program was overwhelmingly positive for both patients (4.9 +/- 0.7) and parents (4.9 +/- 0.3). By allowing patients to interact with the adult team prior to transition and developing transition protocols which address CF-specific issues like infection control and fertility, successful transition from pediatric to adult cystic fibrosis care can be accomplished.
2001
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Female; Humans; Male; Adolescent Psychology; Interviews as Topic; Mental Health; Reproducibility of Results; Psychometrics; Health Status Indicators; Chi-Square Distribution; adolescent; Norway/epidemiology
Description
This paper studies test-retest reliability and validity of one measure of adolescent health complaints. The test-retest included an eight-item symptom checklist developed for the survey of Health Behaviour in School-aged Children (n=344). Qualitative analysis showed adequate validity for most items. For the total sample, all items were found to have adequate intraclass correlation coefficients (ICC) in the range 0.61-0.75. There were inter-item differences and girls generally received the higher values. Most changes were within one category. Adolescents' understanding of 16 complaints was studied by interviews with 38 adolescents. A few items showed ambiguity in interviews despite adequate test-retest stability.
2001
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Humans; Male; Grief; Cohort Studies; Interviews as Topic; Longitudinal Studies; Religion and Psychology; Acquired Immunodeficiency Syndrome; Caregivers/psychology; Homosexuality; Male/psychology; San Francisco
Description
Spiritual phenomena were spontaneously reported in interviews of 68 of 125 recently bereaved HIV-positive and HIV-negative partners of men who died from AIDS. Spiritual schemas involving beliefs, experiences, rituals, social support, and roles were used to help assimilate the fact of death and were appraised as sources of solace and meaning. The relationship between spirituality and coping, mood, and physical health was examined. Those reporting spiritual phenomena showed higher levels of depression and anxiety and lower levels of positive states of mind, used more adaptive coping strategies, and reported more physical health symptoms than those who did not report spiritual phenomena.
1997
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Child; Female; Humans; infant; Male; Great Britain; Attitude of Health Personnel; Interviews as Topic; Questionnaires; Attitude to Death; Professional-Family Relations; Communication; Physicians; Nurses; Tissue and Organ Procurement; Tissue Donors; Preschool; bereavement; infant; Newborn; cause of death; Parents/psychology; France; Police
Description
OBJECTIVE--To determine parent's views on how death of their children should have been handled. DESIGN--Retrospective questionnaire survey of parents who had experienced death of their child. SETTING--Charitable organisation of bereaved parents. SUBJECTS--150 bereaved parents, all members of the organisation, of whom 120 (80%) participated voluntarily in the study. MAIN OUTCOME MEASURES--Child's age; date and cause of death; details of person breaking the news and handling of the interview; time parents spent with dead child, their attitude to requests for organ donation, and follow up support received. RESULTS--122 children's deaths were described; the largest single group was due to road traffic accidents, 16 were suicides, and eight were murders. Twice as many interviews were rated as sympathetically or reasonably handled as badly or offensively handled (68 v 34). The interview ratings depended on the sensitivity and personal skills of the interviewers rather than on their previous contact or professional position; police were rated as more sympathetic than doctors and nurses. Of 109 respondents, 81 had seen their child's body, 44 of whom thought that sufficient time had been denied. Of the 28 parents who did not see the body, 17 subsequently stated their regret. In 82 parents organ donation had not been discussed. Only 16 parents recorded any follow up support from hospital staff and very few support at the time. CONCLUSIONS--The consistency of the responses suggests a serious need to revise the in service training and education of the police and health professionals in their approach to informing of death; organ donation should be discussed sensitively and parents allowed time with their dead child with fewer restrictions.
1991
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The American Journal Of Occupational Therapy.: Official Publication Of The American Occupational Therapy Association
Date
1997
Subject
Child; Female; Humans; Male; Interviews as Topic; Longitudinal Studies; Activities of Daily Living; Reproducibility of Results; Psychometrics; Observer Variation; Disability Evaluation; Preschool; infant; Cerebral Palsy/rehabilitation; Developmental Disabilities/rehabilitation; Down Syndrome/rehabilitation
Description
OBJECTIVE: This study examined the equivalence reliability of two administration methods for the Functional Independence Measure for Children (WeeFIM). The two methods were direct observation of child performance and parental interview. METHOD: Thirty children between the ages of 19 months and 71 months with identified developmental disabilities were included in this study. The direct observation and interview methods were administered in random order to each subject within a 3-week period. The direct observation was completed in the educational setting, and the WeeFIM interview was obtained by either in-person interview or telephone interview with the parent. RESULTS: The intraclass correlation coefficient (ICC) for total WeeFIM ratings was .93, indicating consistency between the two administration methods. Analysis of the WeeFIM Motor (13 items) and Cognitive (5 items) domains yielded ICC values of .93 and .75, respectively, suggesting greater consistency for items measuring motor-related skills. CONCLUSION: The results demonstrate good agreement for total ratings when the WeeFIM is administered by direct observation and by interview with a parent. The findings establish the clinical usefulness of information collected by clinical interview.
1997
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Child; Female; Humans; Male; Young Adult; Interviews as Topic; Prospective Studies; Disease Progression; Medical Records; Family Health; adolescent; Preschool; Charting the Territory; Psychological; Stress; Mucopolysaccharidoses/diagnosis/psychology/therapy; Mucopolysaccharidosis I/diagnosis/therapy; Mucopolysaccharidosis III/diagnosis/therapy; Neuronal Ceroid-Lipofuscinoses/diagnosis/psychology/therapy
Rights
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Health Services Needs and Demand; Palliative Care; adolescent; Child; Child Preschool; Communication; hospice care; Humans; Interviews as Topic; Needs Assessment; Parents/px [Psychology]; Professional-Patient Relations; Qualitative Research; Switzerland
Description
The objective of this qualitative study was to explore the perceptions and needs of families who care for a child with a life-limiting disease. Considering the heterogeneity of life-limiting diseases in childhood, three diagnostic groups were defined: (a) cancer, (b) neurological disorders, and (c) non-cancer/non-neurological conditions. Fifteen parents whose child had been treated in one of four children's hospitals and received palliative care or had died within the previous 2 years were interviewed. The main interview topics were: communication with professionals, need for support in care (at home or hospital), and bereavement support. Irrespective of the center of care, parents of children with diagnoses other than cancer reported a lack of support concerning practical issues of care and psychosocial aspects. Parents of children with cancer expressed difficulties related to coordination of care especially when care was provided at home. Bereaved parents emphasized their wish for bereavement support. Our findings demonstrate shortcomings in pediatric palliative care in Switzerland and outline basic needs of affected families including psychosocial support, coordination of care and bereavement support. Based on these findings we formulate some suggestions on how to initiate pediatric palliative care in a most efficient way and tailored to the needs of families in Switzerland.
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Parent Perspectives of Neonatal Intensive Care at the End-of-Life
Creator
Currie ER; Christian BJ; Hinds PS; Perna SJ; Robinson C; Day S; Meneses K
Identifier
10.1016/j.pedn.2016.03.023
Publisher
Journal of Pediatric Nursing
Date
2016
Subject
Intensive Care Neonatal/st [standards]; Palliative Care/mt [methods]; Parents/px [psychology]; Professional-family Relations; Terminal Care/px [psychology]; Adaptation Psychological; Adult; Bereavement; Decision Making; Female; Humans; Infant Newborn; Intensive Care Neonatal/td [trends]; Intensive Care Units Neonatal; Interviews As Topic; Male; Palliative Care/px [psychology]; Perception; Qualitative Research; Stress Psychological; Terminal Care/mt [methods]; United States
Description
This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the primary theme with the following categories: ups and downs of parenting in the NICU, decision-making challenges in the NICU, and parent support. Parents encountered challenges with areas for improvement for end-of-life and palliative care in the NICU. Further research is necessary to understand barriers with integrating palliative care and curative care in the NICU, and how NICU care affects bereavement and coping outcomes after infant death.
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Journal of Social Work in End-of-life and Palliative Care
Date
2016
Subject
Parents/px [psychology]; Pediatrics; Social Workers/px [psychology]; Terminal Care/es [ethics]; Terminal Care/px [psychology]; Decision Making; Family; Health Personnel/px [psychology]; Humans; Interviews As Topic; Professional-family Relations; Terminal Care/st [standards]; Withholding Treatment/es [ethics]
Description
The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for health care decisions of children under age 18, although the child's wishes must also be considered. Social workers must balance core social work values, bioethical values, and psychosocial issues presented by such situations. While studies have been conducted with physicians and nurses regarding ethical issues in pediatric end-of-life care settings, little is known about how social workers experience these conflicts. This article utilizes two vignettes to illustrate potential ethical issues in this setting and applies the National Association of Social Workers Standards for Palliative and End of Life Care (NASW, 2004 ) to explore options for their resolution. These vignettes provide descriptions of possible reactions in this setting and can be used as a basis for further exploration of ethics in pediatric end-of-life care from a social work perspective.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).