Role of sarcopenia in the frailty transitions in older adults: a population-based cohort study.

BACKGROUND: Frailty and sarcopenia are age-associated syndromes that have been associated with the risk of several adverse events, mainly functional decline and death, that usually coexist. However, the potential role of one of them (sarcopenia) in modulating some of those adverse events associated to the other one (frailty) has not been explored. The aim of this work is to assess the role of sarcopenia within the frailty transitions and mortality in older people. METHODS: Data from the Toledo Study of Healthy Aging (TSHA) were used. TSHA is a cohort of community-dwelling older adults ≥65. Frailty was assessed according with the Frailty Phenotype (FP) and the Frailty Trait Scale-5 (FTS5) at baseline and at follow-up. Basal sarcopenia status was measured with the standardized Foundation for the National Institutes of Health criteria. Fisher's exact test and logistic regression model were used to determine if sarcopenia modified the transition of frailty states (median follow-up of 2.99 years) and Cox proportional hazard model was used for assessing mortality. RESULTS: There were 1538 participants (74.73 ± 5.73; 45.51% men) included. Transitions from robustness to prefrailty and frailty according to FP were more frequent in sarcopenic than in non-sarcopenic participants (32.37% vs. 15.18%, P ≤ 0.001; 5.76% vs. 1.12%; P ≤ 0.001, respectively) and from prefrailty-to-frailty (12.68% vs. 4.27%; P = 0.0026). Improvement from prefrail-to-robust and remaining robust was more frequent in non-sarcopenic participants (52.56% vs. 33.80%, P ≤ 0.001; 80.18% vs 61.15%, P ≤ 0.001, respectively). When classified by FTS5, this was also the case for the transition from non-frail-to-frail (25.91% vs. 4.47%, P ≤ 0.001) and for remaining stable as non-frail (91.25% vs. 70.98%, P ≤ 0.001). Sarcopenia was associated with an increased risk of progression from robustness-to-prefrailty [odds ratio (OR) 2.34 (95% confidence interval, CI) (1.51, 3.63); P ≤ 0.001], from prefrailty-to-frailty [OR(95% CI) 2.50 (1.08, 5.79); P = 0.033] (FP), and from non-frail-to-frail [OR(95% CI) 4.73 (2.94, 7.62); P-value ≤ 0.001]. Sarcopenia does not seem to modify the risk of death associated with a poor frailty status (hazard ratios (HR, 95%) P > 0.05). CONCLUSIONS: Transitions within frailty status, but not the risk of death associated to frailty, are modulated by the presence of sarcopenia.

Differential Association of Frailty and Sarcopenia With Mortality and Disability: Insight Supporting Clinical Subtypes of Frailty.

OBJECTIVES: Sarcopenia and frailty have been shown separately to predict disability and death in old age. Our aim was to determine if sarcopenia may modify the prognosis of frailty regarding both mortality and disability, raising the existence of clinical subtypes of frailty depending on the presence of sarcopenia. DESIGN: A Spanish longitudinal population-based study. SETTING AND PARTICIPANTS: The population consists of 1531 participants (>65 years of age) from the Toledo Study of Health Aging. METHODS: Sarcopenia and frailty were assessed following Foundation for the National Institutes of Health criteria and the Fried Frailty Phenotype, respectively. Mortality was assessed using the National Death Index. Functional status was determined using Katz index. We ran multivariate logistics and proportional hazards models adjusting for age, sex, baseline function, and comorbidities. RESULTS: Mean age was 75.4 years (SD 5.9). Overall, 70 participants were frail (4.6%), 565 prefrail (36.9%), and 435 sarcopenic (28.4%). Mean follow-up was 5.5 and 3.0 years for death and worsening function, respectively. Furthermore, 184 participants died (12%) and 324 worsened their functioning (24.8%). Frailty and prefrailty were associated with mortality and remained significant after adjustment by sarcopenia [hazard risk (HR) 3.09, 95% confidence interval (CI) 1.84-5.18; P < .001; HR 1.58, 95% CI 1.12-2.24, P = .01]. However, the association of sarcopenia with mortality was reduced and became nonsignificant (HR 1.43, 95% CI 0.99-2.07, P = .057) when both frailty and sarcopenia were included in the same model. In the disability model, frailty and sarcopenia showed a statistically significant interaction (P = .016): both had to be present to predict worsening of disability. CONCLUSIONS AND IMPLICATIONS: Sarcopenia plays a relevant role in the increased risk of functional impairment associated to frailty, but that seems not to be the case with mortality. This finding raises the need of assessing sarcopenia as a cornerstone of the clinical work after diagnosing frailty.

Impact of End-of-Life Circumstances on the Adjustment of Bereaved Siblings of Children Who Died from Cancer.

The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.48) after their child's death from cancer. One sibling per family aged 8-17 years (M = 12.41, SD = 2.64) was randomly selected to participate. Families completed measures of siblings' grief and internalizing symptoms, as well as a structured interview about circumstances surrounding the death. Mother and sibling reports of EoL circumstances were generally concordant, except there was a discrepancy between mothers and children about whether or not children expected their sibling's death (t(75) = 1.52, p = .018). Mother reports of sibling internalizing symptoms were above the normative mean (t(83) = 4.44, p ≤ .001 (M = 56.01 ± 12.48), with 39% (n = 33) in the borderline/clinical range. Sibling opportunity to say goodbye was associated with greater grief-related growth (t(79) = - 1.95, p = .05). Presence at the death and wishing they had done something differently were both associated with greater grief (t(80) = - 2.08, p = .04 and t(80) = - 2.24, p = .028, respectively) and grief-related growth (t(80) = - 2.01, p = .048 and t(80) = - 2.31, p = .024, respectively). However, findings were primarily unique to sibling report, with few mother-reported effects. The adjustment of bereaved siblings may be affected by certain modifiable circumstances surrounding the death of their brother or sister. A proportion of bereaved siblings had elevated internalizing symptoms irrespective of circumstances at EoL. Further work is needed to understand predictors of adjustment among bereaved siblings to provide better support and optimize their outcomes.

Development and testing of the Hogan Inventory of Bereavement short form for children and adolescents.

To reduce response burden for bereaved children and adolescents, we provide data on the development and psychometric testing of a short form of the Hogan Sibling Inventory of Bereavement (HSIB). The resulting measure of grief symptoms and personal growth was renamed the Hogan Inventory of Bereavement - Short Form (Children and Adolescents; HIB-SF-CA). Psychometric properties were evaluated in a sample of 86 bereaved siblings. Instrument development and validation research design methods were used. Evidence of strong reliability and convergent validity indicates that the 21-item HIB-SF-CA is comparable to the original 46-item HSIB in measuring grief and personal growth in this population.

The Influence of Parent Distress and Parenting on Bereaved Siblings' Externalizing Problems.

OBJECTIVES: Bereaved siblings experience more externalizing problems compared to non-bereaved peers and norms; however, the mechanisms explaining this phenomenon have not been empirically examined. This study tested the serial indirect effects of sibling bereavement on adolescents' externalizing problems through parent distress (i.e., internalizing symptoms) and parenting (i.e., parenting behaviors, parent-adolescent communication). METHODS: During home visits, 72 bereaved adolescents (ages 10-18) whose brother/sister died from cancer and 60 comparison peers reported about their externalizing problems and their mothers' and fathers' parenting behaviors (warmth, behavioral control, psychological control) and parent-adolescent communication (open communication, problematic communication). Mothers and fathers reported their own internalizing symptoms. RESULTS: Bereaved siblings reported more externalizing problems (p =.048) and bereaved mothers reported more internalizing symptoms relative to the comparison group (p =.015). Serial multiple mediation models indicated that elevated externalizing problems were partially explained by both bereaved mothers' internalizing symptoms and parenting and communication (less warmth [CI: 0.04, 0.86], more psychological control [CI: 0.03, 0.66], and more problematic mother-adolescent communication [CI: 0.03, 0.79]), with a significant indirect effect also emerging for open mother-adolescent communication [CI: 0.05, 1.59]. Bereaved fathers did not significantly differ in internalizing symptoms from comparison fathers (p =.453), and no significant indirect effects emerged for fathers. CONCLUSIONS: Elevated externalizing problems in bereaved siblings may result from mothers' distress and the impact on their parenting and communication. Targeting adjustment and parenting in bereaved mothers following a child's death may reduce externalizing problems in bereaved siblings. Research to evaluate family-centered interventions is needed.

Changes in Siblings Over Time After the Death of a Brother or Sister From Cancer.

BACKGROUND: Limited research has examined the impact of a child's death from cancer on siblings. Even less is known about how these siblings change over time. OBJECTIVE: This study compared changes in siblings 1 (T1) and 2 (T2) years after the death of a brother or sister from cancer based on bereaved parent and sibling interviews. METHODS: Participants across 3 institutions represented 27 families and included bereaved mothers (n = 21), fathers (n = 15), and siblings (n = 26) ranging from 8 to 17 years old. Participants completed semistructured interviews. Content analysis identified emerging themes and included frequency counts of participant responses. McNemar tests examined differences in the frequency of responses between T1 and T2 data. RESULTS: Participants reported similar types of changes in bereaved siblings at both time points, including changes in sibling relationships, life perspectives, their personal lives, and school performance. A new theme of "openness" emerged at T2. Frequencies of responses differed according to mother, father, or sibling informant. Overall, participants less frequently reported changes at T2 versus T1. Compared with findings in the first year, participants reported greater sibling maturity at follow-up. CONCLUSION: Overall changes in bereaved siblings continued over 2 years with less frequency over time, with the exception of increases in maturity and openness. IMPLICATIONS FOR PRACTICE: Providers can educate parents regarding the impact of death of a brother or sister over time. Nurses can foster open communication in surviving grieving siblings and parents as potential protective factors in families going through their grief.

Grief and growth in bereaved siblings: Interactions between different sources of social support.

The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings' grief and grief-related growth and to examine whether nonparental sources of social support buffer the effects of low parent support on bereaved siblings. Families (N = 85) were recruited from cancer registries at 3 pediatric institutions 3-12 months after a child's death. Bereaved siblings were 8-18 years old (M = 12.39, SD = 2.65) and majority female (58%) and White (74%). During home visits, siblings reported their perceptions of social support from parental and nonparental sources using the Social Support Scale for Children, as well as grief and grief-related growth using the Hogan Sibling Inventory of Bereavement. Parent, friend, and teacher support were positively correlated with grief-related growth, whereas parent and peer support were negatively correlated with grief for adolescents. Teacher and friend support significantly moderated the association between parent support and grief such that teacher and friend support accentuated the positive effects of parent support. Friend and peer support moderated associations between parent support and grief/growth for adolescents but not children. School-based social support, namely from friends, peers, and teachers, appears to facilitate the adjustment of bereaved siblings. Findings suggest that bereaved siblings may benefit from enhanced support from teachers and friends regardless of age, with middle/high school students particularly benefitting from increased support from close friends and peers. (PsycINFO Database Record

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."

Maintaining Integrity: How Nurses Navigate Boundaries in Pediatric Palliative Care.

PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families. DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses from four practice sites was interviewed using a semi-structured interview guide. RESULTS: Nurses across the sites engaged in a process of maintaining integrity whereby they integrated two competing, yet essential, aspects of their nursing role - behaving professionally and connecting personally. When skillful in both aspects, nurses were satisfied that they provided high-quality, family-centered care to children and families within a clearly defined therapeutic relationship. At times, tension existed between these two aspects and nurses attempted to mitigate the tension. Unsuccessful mitigation attempts led to compromised integrity characterized by specific behavioral and emotional indicators. Successfully mitigating the tension with strategies that prioritized their own needs and healing, nurses eventually restored integrity. Maintaining integrity involved a continuous effort to preserve completeness of both oneself and one's nursing practice. CONCLUSIONS: Study findings provide a theoretical conceptualization to describe the process nurses use in navigating boundaries and contribute to an understanding for how this specialized area of care impacts health care providers. PRACTICE IMPLICATIONS: Work environments can better address the challenges of navigating boundaries through offering resources and support for nurses' emotional responses to caring for seriously ill children. Future research can further refine and expand the theoretical conceptualization of maintaining integrity presented in this paper and its potential applicability to other nursing specialties.

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.

Do You Know My Child? Continuity of Nursing Care in the Pediatric Intensive Care Unit.

BACKGROUND: Parents of children with complex, chronic conditions report a desire for continuity of care, but relatively little is known about the ways in which nursing continuity of care occurs and the extent to which it is delivered in the inpatient setting. OBJECTIVES: The objective of this analysis, which arose from a study on best practices in parent/nurse interactions in the pediatric intensive care unit (PICU), was to explore the delivery of continuity of nursing care in the PICU from the perspective of both parents and nurses. METHODS: A qualitative, grounded theory study using situational analysis was conducted with seven parents and 12 nurse participants from a single PICU. Data sources included in-depth interviews, observation, and organizational written materials. Data were coded and analyzed using memoing and situational and positional maps to highlight emerging themes, context, and positions within the data. RESULTS: Parents repeatedly endorsed a desire for continuity of nursing care, wanting to ensure that the bedside nurse valued their child as an individual and understood the complexities of the child's care regimen. Nurses understood this need but faced both contextual and personal challenges to achieving continuity, including fluctuations in staffing needs, training demands, fear of emotional entanglement, and concern for missed learning opportunities. DISCUSSION: Continuity of nursing care is highly valued by parents of children with complex chronic condition in the PICU, but significant barriers to optimal delivery exist within the current critical care environment. Mechanisms for supporting nurses to deliver continuity of care are needed, as are alternative ways to help parents feel that all nurses caring for their child have the knowledge necessary to deliver safe and compassionate care.

The case for a sociology of dying, death, and bereavement.

Dying, death, and bereavement do not occur in a social vacuum. How individuals and groups experience these phenomena will be largely influenced by the social context in which they occur. To develop an adequate understanding of dying, death, and bereavement we therefore need to incorporate a sociological perspective into our analysis. This article examines why a sociological perspective is necessary and explores various ways in which sociology can be of practical value in both intellectual and professional contexts. A case study comparing psychological and sociological perspectives is offered by way of illustration.

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.

What impact do hospital and unit-based rules have upon patient and family-centered care in the pediatric intensive care unit?

Patient and family-centered care (PFCC) is the foundation for pediatric healthcare. The existence of hospital rules can, however, impact the extent to which PFCC is delivered. This qualitative, grounded theory study identified the existence of explicit and implicit rules in a pediatric intensive care unit, all of which negatively affected the family's ability to receive care that was attentive to their needs. The rules also placed the registered nurse in the challenging position of serving as rule enforcer and facilitator of PFCC. Further work is needed to explore how to adapt the hospital environment to better meet families' needs.

Factors affecting recruitment and participation of bereaved parents and siblings in grief research.

This study examined participation factors in a study of families (N = 84) within 1 year of a child's cancer-related death. Specific aims were to examine associations between: (a) recruitment variables (number of phone calls made to eligible families, number of calls answered by eligible families) and participation rates (study agreement and refusal) and (b) characteristics of deceased children (gender, age, length of illness, time since death) and participation rates. Characteristics of deceased children did not differ between participating and non-participating families. Researchers made significantly fewer calls to participating versus refusing families. Participating families most often agreed during the first successful call connection, and more calls did not mean more recruitment success. Thus, it is reasonable to limit the number of calls made to bereaved families. Despite recruitment challenges, many bereaved parents and siblings are willing and interested to participate in grief research.

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.

Moving family-centered care forward: Bereaved fathers' perspectives.

This paper describes the key behaviors of "excellent" pediatric healthcare providers - a term used by fathers of children with complex, life-threatening illness to describe providers who consistently and effectively engage in family-centered care for children and their families. Using interview data from a multi-site grounded theory study of 60 fathers with a deceased child, five behaviors were identified: getting to know the family as individuals, talking about non-healthcare related topics, connecting in a human-human relationship, including parents as team members, and applying specialized knowledge to help the family. These behaviors are consistent with the goals of family-centered care, but they are inconsistently practiced, resulting in less-than-optimal care for children and their families during periods of crisis and vulnerability. A renewed focus on relationship building and interactions with families is needed, as well as a re-evaluation of the training of pediatric healthcare providers.

Bereaved parents and siblings offer advice to health care providers and researchers.

OBJECTIVE: To determine how to improve care for families by obtaining their advice to health care providers and researchers after a child's death from cancer. DESIGN: Families with a surviving sibling (age, 8 to 17 y) were recruited from cancer registries at 3 hospitals in the United States and Canada 3 to 12 months (M=10.4, SD=3.5) after the child's death. SETTING: Data were collected in the home. PARTICIPANTS: Participants (N=99) included 36 mothers, 24 fathers, and 39 siblings from 40 families. OUTCOME MEASURES: Each participant completed a qualitative interview that was audio recorded, transcribed, and coded for thematic content. FINDINGS: Five major themes included the need for: (a) improved communication with the medical team, (b) more compassionate care, (c) increased access to resources, (d) ongoing research, and (e) offering praise. Interwoven within the 5 themes was a subtheme of continuity of care. CONCLUSIONS: Many participants were pleased with the care the child with cancer received, but others noted areas in need of improvement, particularly medical communication and continuity of care. Additional research is needed to inform interventions to improve services for families of children with life-limiting conditions.

Type of continuing bonds expression and its comforting versus distressing nature: implications for adjustment among bereaved mothers.

This study investigated type of continuing bonds (CB) expression and its comforting versus distressing nature in relation to psychosocial adjustment among bereaved mothers. Twenty-eight mothers whose child had died within the previous five years participated in a CB interview in which they rated the extent they used each of 11 different types of CB expression during the past month and the degree to which they experienced each of the CB expressions as comforting and distressing. CB expressions involving illusions and hallucinations of the deceased child were predictive of greater distress whereas those involving belief that the deceased child was aware of the mother or communicating with her through dreams were not associated with symptoms, but instead linked to greater spirituality. Furthermore, mothers who reported CB as more comforting than distressing had lower symptom ratings. The implications of the findings for the attachment theory perspective on unresolved loss are discussed.