Optimising the process for conducting scoping reviews.

Knowledge synthesis constitutes a key part of evidence-based medicine and a scoping review is a type of knowledge synthesis that maps the breadth of literature on a topic. Conducting a scoping review is resource intensive and, as a result, it can be challenging to maintain best practices throughout the process. Much of the current guidance describes a scoping review framework or broad ways to conduct a scoping review. However, little detailed guidance exists on how to complete each stage to optimise the process. We present five recommendations based on our experience when conducting a particularly challenging scoping review: (1) engage the expertise of a librarian throughout the process, (2) conduct a truly systematic search, (3) facilitate communication and collaboration, (4) explore new tools or repurpose old ones, and (5) test every stage of the process. These recommendations add to the literature by providing specific and detailed advice on each stage of a scoping review. Our intent is for these recommendations to aid other teams that are undertaking knowledge synthesis projects.

Charting the Territory: End-of-Life Trajectories for Children With Complex Neurological, Metabolic, and Chromosomal Conditions.

CONTEXT: For parents, family, or clinicians of children with rare life-threatening conditions, there is little information regarding likely symptoms, illness trajectory, and end-of-life care. OBJECTIVES: This descriptive analysis of a bereaved cohort recruited in the charting the territory study describes patient characteristics, symptoms, use of medications, discussion of resuscitation orders, and care provided preceding and during the end of life. METHODS: Of the 275 children enrolled in the Charting the Territory study, 54 died between 2009 and 2014. Baseline demographic information, symptoms, interventions, and medical information were collected via chart review, interviews, and surveys. RESULTS: Fifty-one of the 54 children had complete medical records. Of the seven symptoms evaluated, children were found to have an increase in median symptoms from baseline (n = 2) to time of death (n = 3). Opioids were used in the last 48 hours of life in 29 (56.9%) children, whereas only eight (15.7%) were receiving opioids at baseline. Do Not Attempt Resuscitation orders were in place at baseline in 17 (33.3%) children, increasing to 33 (64.7%) at time of death. Death occurred in a hospice setting in 16 (31.4%) children. CONCLUSION: Although much emphasis on pediatric palliative care has been on supportive treatment and symptom management, when faced with a lack of sound understanding of a rare illness, the mode of care can often be reactive and based on critical needs. By developing greater knowledge of symptoms and illness trajectory, both management and care can be more responsive and anticipatory, thereby helping ease illness burden and suffering.

Scoping review of symptoms in children with rare, progressive, life-threatening disorders.

BACKGROUND: Q3 conditions are progressive, metabolic, neurological or chromosomal childhood conditions without a cure. Children with these conditions face an unknown lifespan as well as unstable and uncomfortable symptoms. Clinicians and other healthcare professionals are challenged by a lack of evidence for symptom management for these conditions. AIMS: In this scoping review, we systematically identified and mapped the existing literature on symptom management for children with Q3 conditions. We focused on the most common and distressing symptoms, namely alertness, behavioural problems, bowel incontinence, breathing difficulties, constipation, feeding difficulties, sleep disturbance, temperature regulation, tone and motor problems and urinary incontinence. For children with complex health conditions, good symptom management is pertinent to ensure the highest possible quality of life. METHODS: Scoping review. Electronic database searches in Ovid MEDLINE, Embase and CINAHL and a comprehensive grey literature search. RESULTS: We included 292 studies in our final synthesis. The most commonly reported conditions in the studies were Rett syndrome (n=69), followed by Cornelia de Lange syndrome (n=25) and tuberous sclerosis (n=16). Tone and motor problems were the most commonly investigated symptom (n=141), followed by behavioural problems (n=82) and sleep disturbance (n=62). CONCLUSION: The evidence for symptom management in Q3 conditions is concentrated around a few conditions, and these studies may not be applicable to other conditions. The evidence is dispersed in the literature and difficult to access, which further challenges healthcare providers. More research needs to be done in these conditions to provide high-quality evidence for the care of these children.

A novel classification system for research reporting in rare and progressive genetic conditions.

AIM: To create a classification system for severe, rare, and progressive genetic conditions for use in research reporting. METHOD: A modified Delphi consensus technique was used to create and reach agreement on a new system of condition categories. Interrater reliability was tested via two rounds of an online survey whereby physicians classified a subset of conditions using our novel system. Overall percentage agreement and agreement above chance were calculated using Fleiss' kappa (κ). RESULTS: Eleven physicians completed the first Delphi, with an overall agreement of 76.4%, the κ value was 0.57 (95% confidence interval 0.51-0.63), indicating moderate agreement (0.41-0.60) above chance. Based on the first survey several categories were described in more detail. The second survey confirmed a classification system with 12 categories, with an overall percentage agreement among the participants of 82.6%. The overall mean κ value was 0.71 (95% confidence interval 0.65-0.77), indicating substantial agreement (0.61-0.80). INTERPRETATION: Our new system was useful in categorizing a broad range of rare childhood diseases and may be applicable to other rare disease studies; further validation in larger cohorts is required. WHAT THIS PAPER ADDS: This novel 12-category classification system can be used in research reporting in rare and progressive genetic conditions.

UN NOVEDOSO SISTEMA DE CLASIFICACIÓN PARA REPORTAR CONDICIONES GENÉTICAS RARAS Y PROGRESIVAS: OBJETIVO: Crear un sistema de clasificación para condiciones genéticas severas, raras y progresivas para uso en informes de investigación METODO: Se utilizó una técnica de consenso de Delphi modificada para crear y llegar a un acuerdo sobre un nuevo sistema de categorías de condiciones genéticas. La confiabilidad del sistema entre evaluadores se corroboró por medio de dos rondas de encuestas en linea en la que los médicos clasificaron un subconjunto de condiciones utilizando nuestro nuevo sistema. El porcentaje general de acuerdo y el acuerdo sobre la probabilidad se calcularon utilizando el kappa (κ) de Fleiss. RESULTADOS: Once médicos completaron el primer Delphi, con un acuerdo general de 76,4%, el valor de κ fue 0,57 (intervalo de confianza del 95% 0,51-0,63), lo que indica un acuerdo moderado (0,41-0,60). Sobre la base de la primera encuesta se describieron con más detalle varias categorías. La segunda encuesta confirmó un sistema de clasificación con 12 categorías, con un porcentaje de acuerdo general entre los participantes del 82,6%. El valor medio global de κ fue de 0,71 (intervalo de confianza del 95%: 0,65 a 0,77), lo que indica un acuerdo alto (0,61 a 0,80). INTERPRETACIÓN: Nuestro nuevo sistema de clasificación fue útil para categorizar una amplia gama de enfermedades infantiles raras y puede ser aplicable a otros estudios de enfermedades raras. Sugerimos validación adicional en cohortes más numerosas.

UM NOVO SISTEMA DE CLASSIFICAÇÃO PARA PESQUISAS RELATANDO CONDIÇÕES GENÉTICAS RARAS E PROGRESSIVAS: OBJETIVO: Criar um sistema de classificação para condições genéticas severas, raras e progressivas, a ser usado em relatos de pesquisas. MÉTODO: Uma técnica de consenso Delphi modificada foi usada para criar e obter concordância sobre um novo sistema de categorias de condições. A confiabilidade inter-examinadores foi testada em dois momentos por meio de um questionário virtual, pelo qual médicos classificaram um subgrupo de condições usando nosso novo sistema. A porcentagem geral de concordância e a concordância maior que o acaso foram calculadas usando kappa (k) de Fleiss. RESULTADOS: Onze médicos completaram o primeiro Delphi, com concordância geral de 76,4%, valor de k de 0,57 (intervalo de confiança a 95% 0,51-0,63), indicando concordância moderada (0,41-0,60) maior do que o acaso. Com base no primeiro questionário várias categorias foram descritas com maior detalhe. O segundo questionário confirmou um sistema de classificação com 12 categorias, com porcentagem geral de concordância entre os participantes de 82,6%. O valor de k médio geral foi 0,71 (intervalo de confiança a 95% 0,65-0,77), indicando concordância substancial (0,61-0,80). INTERPRETAÇÃO: Nosso novo sistema foi útil em categorizar uma ampla variedade de doenças da infância, e pode ser aplicável ao estudo de outras doenças raras; continuar a validação em coortes maiores é necessário.

What Would Be Really Helpful but Nobody Ever Tells You: Five Key Recommendations Derived From Lessons Learned During a Qualitative Study in Clinical Settings.

The complexity of qualitative research can lead to a less thorough analysis than would be ideal. Even experienced researchers can become entwined in the myriad of decisions that must be made. Descriptions of qualitative approaches in numerous textbooks and published articles often lack sufficient details to help a researcher surface from the entanglements, especially when conducting studies in clinical settings. In this paper, we share our experiences of navigating some "real-world" issues in doing qualitative research. We describe five key, practical recommendations to assist researchers in preventing, or at least alleviating, some of the challenges that researchers may face, particularly ones that limit in-depth analysis: (1) conduct a pilot study, (2) hire a research analyst, (3) engage the "right" team, (4) attend to team cohesion, and (5) conduct conceptual analysis through a process of "node expansion."

Siblings' voices: A prospective investigation of experiences with a dying child.

Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal, qualitative study over 2 years using interpretive descriptive methodology to understand siblings' perspectives when a brother or sister was dying at home or in hospital. The insights from the 10 siblings revealed complex experiences, both personal and with the ill child, their families, and peers. These experiences were paradoxically sources of strain and of support, revealing the importance of validation and normalization in assisting siblings to successfully navigate the experience.

Charting the territory: Describing the functional abilities of children with progressive neurological conditions.

AIMS: Little is known about the functional abilities of children with progressive genetic, metabolic, or neurological conditions (PNCs). In this study, children with PNCs were followed over a 2-year period to assess their functional abilities over time. Specific aims were to: 1) describe the changes in functional skills and the effects of age for children with PNCs, 2) assess changes in these children's need for caregiver assistance over time, and 3) examine relationships between these children's functional skills and need for caregiver assistance. METHODS: This study involved a longitudinal, descriptive design with three assessments occurring at Baseline, Year 1, Year 2. Functional skills and caregiver assistance were assessed by the Pediatric Evaluation of Disability Inventory (PEDI). The PEDI questionnaire was completed at baseline and then yearly by parents, along with the assistance of a trained research assistant (RA). RESULTS: The study was completed with 83 children (mean age at Baseline=7.1yrs, SD=4.6). Mean Functional skills scores were in the low ranges at Baseline and did not change significantly across time points (F(2, 71)=0.437, p=0.58). Time point had no effect on caregiver assistance ratings (p<0.2); however, children required greater amounts of help with self-care at later time points than for other functional domains. Statistically significant correlations were found between PEDI-Functional skills and caregiver assistance ratings (r=0.80-0.90, p<0.01). CONCLUSIONS: Functional skills were low for these children overall, irrespective of age. In children with PNCs: 1) mean functional skills did not change significantly over time; 2) caregiver assistance scores remained stable and 3) functional skills and levels of caregiver assistance were strongly positively correlated. Further research to explore the long-term functional trajectory in children with a PNC is recommended.

Pain reporting and analgesia management in 270 children with a progressive neurologic, metabolic or chromosomally based condition with impairment of the central nervous system: cross-sectional, baseline results from an observational, longitudinal study.

Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore the differences between parental and clinical pain reporting in children with life-limiting conditions at the time of enrollment into an observational, longitudinal study and to determine if differences in pain experiences were associated with patient- or treatment-related factors. Pain was common, under-recognized and undertreated among the 270 children who enrolled into the "Charting the Territory" study. Children identified by their parents as experiencing pain (n=149, 55%) were older, had more comorbidities such as dyspnea/feeding difficulties, were less mobile with lower functional skills and used analgesic medications more often, compared to pain-free children. Forty-one percent of children with parent-reported pain (21.8% of all patients) experienced pain most of the time. The majority of clinicians (60%) did not document pain assessment or analgesic treatment in the medical records of patients who were experiencing pain. Documentation of pain in the medical record was positively correlated with children receiving palliative care services and being prescribed analgesics, such as acetaminophen, nonsteroidal anti-inflammatory drugs and opioids, as well as the adjuvant analgesics gabapentin and amitriptyline.

Siblings of Children With a Complex Chronic Health Condition: Maternal Posttraumatic Growth as a Predictor of Changes in Child Behavior Problems.

Objective: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. Methods: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. Results: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. Conclusion: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family.

Best Practice in Provider/Parent Interaction.

In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening conditions. Analysis of semistructured interviews with 34 parents and 80 health care professionals (HCPs) and 88 observation periods of HCP/parent interactions indicated that BPHCPs shared a broad worldview; values of equity, family-centered care, and integrity; and a commitment to authentic engagement. BPHCPs engaged in direct care activities, in connecting behaviors, and in exquisitely attuning to particularities of the situation in the moment, resulting in positive outcomes for parents and HCPs. By focusing on what HCPs do well, findings showed that not only is it possible for HCPs to practice in this way, but those who do so are also recognized as being the best at what they do. We provide recommendations for practice and initial and ongoing professional education.

Charting the Territory: Children and families living with progressive life-threatening conditions.

OBJECTIVES: To increase awareness of the topic of paediatric palliative care among practicing physicians in Canada by exploring the impact of a child's neurological or rare genetic life-threatening condition on the affected child and his/her parents. METHODS: Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, which followed 275 children and 390 parents from 258 families. Parents completed multiple surveys, for themselves and their child. RESULTS: These children had a high symptom burden. The three most common symptoms were pain, sleep problems and feeding difficulties; on average, they had 3.2 symptoms of concern. Despite analgesic use, the frequency of pain episodes and distress were invariant over time, suggesting that treatments were not successful. Parents experienced anxiety, depression and burden; at the same time they also reported positive life change and a high degree of spirituality. The child's condition resulted in parental changes in living arrangements, work status and hours devoted to caregiving. Nearly two-thirds of families were involved with a palliative care team; the size of the community in which a family resided did not make a significant difference in such involvement. CONCLUSIONS: These families experience many challenges, for the patient, other individual members and the family as a whole. At least some of these challenges may be alleviated by early and organized palliative care. Effective interventions are needed to enhance symptom management for the ill child and to alleviate the various negative impacts on the family.

OBJECTIFS: Mieux faire connaître les soins palliatifs aux médecins en exercice du Canada en explorant les effets de maladies neurologiques ou génétiques rares au potentiel fatal sur l'enfant atteint et ses parents. MÉTHODOLOGIE: Les auteurs publient les résultats transversaux et initiaux d'une étude d'observation longitudinale, Explorer de nouveaux territoires, auprès de 275 enfants et de 390 parents de 258 familles. Les parents ont rempli de multiples sondages en leur nom et au nom de leur enfant. RÉSULTATS: Les enfants présentaient un lourd fardeau de symptômes. Les trois plus fréquents étaient la douleur, les troubles du sommeil et les problèmes d'alimentation. En moyenne, ils avaient 3,2 symptômes inquiétants. Malgré l'utilisation d'analgésiques, la fréquence d'épisodes de douleur et de détresse ne changeait pas au fil du temps, ce qui laisse supposer l'échec des traitements. Les parents ressentaient de l'anxiété, de la dépression et un fardeau, mais signalaient également un changement de vie positif et une spiritualité marquée. En raison de l'état de l'enfant, les parents modifiaient leur mode de vie, leur statut professionnel et les heures consacrées aux soins. Près des deux tiers des familles recouraient à une équipe de soins palliatifs, sans que la dimension de leur communauté y ait une incidence significative. CONCLUSIONS: Ces familles éprouvaient de nombreux problèmes, tant pour les patients et les autres membres de la famille que pour l'ensemble de la famille. Au moins certains problèmes peuvent être atténués par des soins palliatifs instaurés rapidement et organisés. Des interventions efficaces s'imposent pour améliorer la prise en charge des symptômes de l'enfant et en réduire les divers effets négatifs pour la famille.

Always with me: understanding experiences of bereaved children whose baby sibling died.

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

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

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

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

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

Impact of research participation on parents of seriously ill children.

BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families. OBJECTIVE: To obtain parents' perceptions about their experience of participating in one of two research studies. DESIGN: Descriptive, quantitative survey. SETTING/SUBJECTS: Caregivers of children with life-threatening conditions (n=323) who were caring for the child at home. MEASUREMENTS: Researcher-designed Impact of Participation questionnaire. RESULTS: Few differences between the two groups were found on Impact responses. Not a single parent reported regretting participating in their study and almost all (96.3%) reported that conducting research about family's experiences in pediatric palliative care had value. Just over three-quarters (76.2%) did not find participation at all painful, and 73.7% reported that participation was about as painful as expected, with 23.2% reporting less painful. Approximately half (50.5%) said that participation had at least some positive effect and only three parents reported any negative effect. An overwhelming majority (93.4%) would recommend participation to other parents in a similar situation. CONCLUSIONS: Participation in research for families with children who have a life-threatening condition is not only acceptable to parents, but may in fact have a positive effect. Although clinicians and Institutional Review Boards may be hesitant to fully support such research, it is clear that conducting research in the field of pediatric palliative care is important.

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

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

Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care.

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

A call to the field: complicated grief in the DSM-5.

While complicated grief has been addressed in part through some recommendations for modifications in the upcoming fifth version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), there remain reasons for substantial concern about its scope therein and within clinical practice. The authors issue a call to the field, reiterating that complicated grief is complicated and cannot be confined to just one syndrome or disorder. Continued research is urged, and specific caveats are identified for exploring the complex dimensions of loss and grief. The authors advocate for ongoing dialogue about and investigation of various potential forms of complicated grief.