Loneliness, psychological distress, and the moderating effect of positive aspects of caregiving among cancer caregivers.

PURPOSE: Family caregivers of patients with cancer often experience both loneliness and symptoms of psychological distress, such as anxiety and depression. The purpose of this study was to evaluate the associations between loneliness and anxiety and loneliness and depression among family caregivers of patients with cancer and to investigate whether positive aspects of caregiving can have a moderating effect on these relationships. METHODS: We conducted a cross-sectional exploratory study using baseline data from an ongoing multisite clinical trial. Multiple linear regression models were used to analyze the relationships between loneliness and psychological distress symptoms and the moderating effect of positive aspects of caregiving. Psychological distress outcomes were measured using PROMIS Short Forms (8a) for Anxiety and Depression. RESULTS: We identified a significant association between loneliness and symptoms of both anxiety and depression. Positive aspects of caregiving did not significantly moderate the relationship between loneliness and depression or loneliness and anxiety. CONCLUSION: The results of this study shed new light on the relationship between loneliness and symptoms of psychological distress experienced by family caregivers of cancer patients, providing a better understanding of the impact that recognition of positive aspects of caregiving has on the association between loneliness and psychological distress symptoms. Our findings emphasize the importance of targeting family caregiver loneliness in order to reduce psychological distress among family caregivers of cancer patients.

Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences.

Half of hospice family caregivers report having unmet information needs, which can contribute to poor pain and symptom management, emergency department use, and hospice disenrollment for care-recipients and to caregiver strain and stress. Effective communication between hospice teams and family caregivers is critical yet communication inadequacies persist. Despite the growing prevalence of distance caregiving, including in hospice care, and the relationship between caregiver proximity and communication effectiveness, little is known about how caregiver proximity is associated with caregiver perceptions of hospice communication. In this secondary analysis of quantitative data from two multisite randomized clinical trials (NCT03712410 and NCT02929108) for hospice family caregivers (N = 525), multivariate linear models with demographic and contextual controls were used to analyze caregivers' perceptions of caregiver-centered communication with hospice providers based on caregiver proximity to the hospice care-recipient. In multivariate models, "local" hospice family caregivers who lived within 1 hour of the hospice care-recipient reported less effective communication with the hospice team than co-residing caregivers; and older caregivers rated communication more favorably than younger caregivers. To improve communication and collaboration between hospice teams and caregivers, regardless of proximity, distance communication training for hospice teams and interventions such as telehealth communication and virtual tools that enable triadic collaboration are recommended. Research is needed to understand why local caregivers, specifically, perceive communication quality less favorably and how hospice teams can better meet local and distance caregiver communication needs.

Using language sample analyses across English dialects: A case-based approach for preschoolers.

This study compared language samples from typically developing 4-year-olds who spoke African American English (AAE), Jamaican English (JE), or Mainstream American English (MAE) to assess the value of using language sample analysis (LSA) measures for characterising language use across dialects of English. Specific LSA metrics included mean length of utterance (MLU) in morphemes and in words, the Index of Productive Syntax (IPSyn), Developmental Sentence Scoring (DSS) and measures of lexical diversity. Children demonstrated diverse linguistic patterns across dialects, but a Kruskal-Wallis H test did not reveal significant differences in scores obtained through LSA measures. Notably, the IPSyn captured morphosyntactic structures in each category across dialects where prior research has highlighted limitations. This preliminary study uses a case-based approach to illustrate the applicability of LSAs in describing linguistic variations across children who speak different dialects of English. Moreover, the findings from this study underscore the potential use of LSAs in describing linguistic patterns to support the characterisation of communication profiles for culturally and linguistically diverse children.

Quality-of-life assessment instruments used across ALS clinics.

INTRODUCTION/AIMS: Instruments have been developed to assess quality of life (QoL) among people with amyotrophic lateral sclerosis (ALS). It is unclear whether these are utilized regularly in the clinical setting to guide individual patient care. In this study we aimed to understand the current use of instruments and existing barriers to assessing QoL in clinical ALS care. METHODS: An anonymous survey developed by Northeast ALS (NEALS) Consortium Palliative Committee members was distributed to all multidisciplinary NEALS members. Data were summarized via calculation of descriptive statistics. ALS Center characteristics were compared using chi-square and Fisher exact tests for categorical variables. RESULTS: Seventy-three (6.4%) of the 1132 NEALS members responded to the survey, representing 148 clinics, 49.3% of whom reported assessing QoL during clinic visits. The most used ALS-specific instruments were the ALS Assessment Questionnaire (19.4%) and Amyotrophic Lateral Sclerosis Specific Quality of Life scale (16.6%). Barriers reported were uncertainty regarding which instrument to use and length of visits. QoL assessment was not significantly correlated with length of clinic visit but with access to specialty palliative care. DISCUSSION: QoL assessments are performed by some, but not all, ALS centers during clinical visits. Although this study did have a low number of responding centers, the percentage, the proportion is similar to that seen in earlier studies, which limits the findings' generalizability. The value of QoL assessments' impact on outcomes should be further investigated and, if warranted, creative ways sought to increase the frequency of their use, including patient self-assessments before clinic and/or the use of teleheath to reduce the length of clinic visits.

Problem-Solving Dimensions among Caregivers of People with Cancer Receiving Outpatient Palliative Care.

Family caregivers of people with cancer encounter a wide range of problems including challenges managing patients' symptoms, difficulties navigating complex healthcare systems, and financial stressors associated with caregiving. Outpatient palliative care teams are ideally positioned to help caregivers respond to these challenges; however, little evidence is available to inform problem-solving support for caregivers in this setting. This article presents results from a secondary analysis of data obtained as part of a randomized clinical trial of a problem-solving intervention for family caregivers of people with cancer receiving outpatient palliative care. It describes the extent to which caregivers report adoption of positive and negative problem orientations and use of rational, impulsive, and avoidant problem-solving styles, and examines whether these problem-solving dimensions differ by age and gender. Results reveal statistically significant negative correlations between caregiver age and positive and negative problem orientations and use of a rational problem-solving style, and statistically significant gender differences with regard to negative problem orientation and use of an impulsive problem-solving style. Findings from this exploratory study highlight unique potential strengths and needs of caregivers, and set the stage for future research on problem-solving among cancer caregivers in the growing field of outpatient palliative care.

Sense making in the wake of familial death: "I continue to work through those feelings".

Sense making is especially common in bereavement when a death challenges an individual's existing worldview. Thus, it is often discussed in the context of statistically atypical deaths, such as the death of a child or death by suicide, that are apt to create a crisis of meaning. Less understood is the process of sense making following more statistically normative deaths, such as those that occur in old age following prolonged illness. In this descriptive phenomenological study, researchers analyzed qualitative interviews and digital narratives created by six individuals who had experienced the death of an older family member with dementia, seeking to identify the essential nature of sense making during bereavement following so-called "normal" losses. Three themes (memorializing the whole person, reflecting on the caregiving experience, and emotional sense making) were identified, shedding light on this specific meaning making process among individuals representing a large and growing segment of the population.

Identifying the palliative care needs of patients and families in gynecologic surgical oncology: A scoping review.

Introduction: Patients undergoing oncology-related gynecologic surgical procedures experience substantial symptom burden and distress. Support from specialist palliative care teams may benefit these patients and their families; however, an evidence-informed approach to the integration of palliative care and gynecologic surgical oncology is needed. To inform such an approach, a scoping review synthesizing current evidence on the palliative care needs of patients and families in gynecologic surgical oncology was conducted.Methods: Reviewers performed a structured search of online databases CINAHL, Scopus, PsycINFO, MEDLINE, and PubMed in addition to the grey literature to identify relevant studies published between 2011 and June 11th, 2021. The original search identified 993 articles, which were dually screened for study inclusion, resulting in a final sample of articles from which data were systematically extracted and synthesized.Results: This review of 59 publications predominantly consisted of European studies (n = 26, 44.1%), described quantitative study methods (n = 47, 79.6%), followed an observational study design (n = 49, 83.1%), and focused on psychological impact of treatment as a major topic of study (n = 21, 35.6%). The dataset also described sexual function of women post treatment (n = 15, 25.4%), quality of life (n = 10, 16.9%), therapeutic decision making (n = 9, 15.2%), pain assessment (n = 2, n = 3.6%), and medication for symptom management (n = 2, 3.6%). Explicit discussion of specialist palliative care involvement was rare.Conclusion: The needs of patients and families in gynecologic surgical oncology are well-suited to palliative care collaboration; however, the body of literature on palliative care services provided to this unique population is underdeveloped.

Family caregiving experiences with hospice lung cancer patients compared to other cancer types.

BACKGROUND: Family caregivers of cancer patients are very involved in communication with healthcare teams; however, little is known about their experiences. Limited information is known about how the type of cancer patients have impact caregiving experiences. OBJECTIVES: This study seeks to compare the caregiving experience of caregivers of hospice lung cancer patients with hospice caregivers of patients with all other cancer types. METHOD: This study is based on a secondary analysis of data generated from a parent study evaluating a behavioral intervention with caregivers of hospice cancer patients. RESULTS: When comparing caregiving experiences by patient diagnosis, significant differences were found in caregivers of hospice lung cancer demographics and experiences with caregiver-centered communication. Specifically, caregivers of lung cancer patients have significantly more trouble with exchange of information, fostering relationships, and decision making with their hospice team. CONCLUSION: More research is needed to understand the impact of lung cancer on caregiver centered communication and the necessary interventions required to address these issues.

When Family Life Contributes to Cancer Caregiver Burden in Palliative Care.

The difficulties of caring for a family member with advanced cancer are well documented. Support from a caregiver's social network-especially other family-is vital to reducing caregiver burden and psychological distress. However, the family environment is not always supportive as reports of family conflict and dissatisfaction with support are common. Despite knowing that family relationships are complex, little is known about the types of family stress that caregivers of advanced cancer patients face in their daily lives. To address this gap, researchers applied concepts from the double ABCX model to conduct a reflexive thematic analysis of interviews with 63 caregivers of cancer patients receiving outpatient palliative care. Four themes of family stress were identified: failed support, relational tensions, denial, and additional care work. Findings inform clinical assessment and caregiver intervention development by revealing the importance of measuring the mundane machinations of family life for caregivers of adult cancer patients.

Comparison of intelligibility measures for children with velopharyngeal insufficiency: visual analog scale ratings, interval scales, and orthographic transcription (OT)-based measures.

Regardless of the underlying cause for speech impairment in speakers with cleft palate, a universal consequence of cleft palate is reduced speech intelligibility. Still, there is no standardised approach for measuring intelligibility for speakers with cleft speech. The current study aimed to determine the relationship between orthographic transcription (OT)-based measures, interval-scale ratings, and visual analog scale (VAS) ratings for perceptual judgements of intelligibility in speakers with cleft palate as judged by speech-language pathologists (SLPs). The speaker participants were six speakers with velopharyngeal insufficiency secondary to cleft palate. Four sets of sentences from the Hearing in Noise Test were recorded from each speaker. A total of 14 SLPs provided their intelligibility judgement on these speaker's recordings by word-by-word orthographic transcriptions, a visual analog scale (0-100), and a 5-point interval rating scale. A Spearman rank correlation test indicated a negative, strong correlation between OT-based measurements and VAS scores (r = -.94; p = 0.01) and between OT-based measurements and interval rating scores (r = -.77, p = 0.01). A strong, positive correlation was found between scores obtained from VAS and interval rating scales (r = .83, p = 0.05). The strong relationship between the objective measure of intelligibility (i.e. OT-based measure) and a subjective measure of intelligibility (i.e. VAS and interval scale) supports using a less time-consuming VAS as a substitute for orthographic transcription in measuring intelligibility in cleft palate speech.

Variability, accuracy, and cross-linguistic transfer in bilingual children speaking Jamaican Creole and English.

Due to the lack of normative data about bilingual speech development and limited availability of diagnostic tools optimised for this population, bilingual children under consideration for speech-language services are at an elevated risk of misdiagnosis. In the absence of validated assessment tools, speech-language pathologists may use measures of accuracy and variability of speech production to diagnose suspected speech sound disorders in bilingual children. Research in general motor development suggests that variability and accuracy may trade off in the course of maturation, whereby movement variability spikes before the transition to a more mature stage of motor control. Such variability-accuracy tradeoffs have been described in monolingual speech development but are understudied in bilingual populations, where cross-linguistic transfer occurs. This study aimed to examine variability, accuracy, and cross-linguistic transfer in the speech of 20 bilingual children speaking Jamaican Creole and English. We hypothesised that children who showed higher accuracy in their productions would also exhibit more variable speech, indicating a variability-accuracy tradeoff. The Word Inconsistency Assessment from the Diagnostic Evaluation of Articulation and Phonology was administered to measure accuracy and variability in the English context, where misdiagnosis is likely to occur. Contrary to our hypothesis, we observed that individuals with higher accuracy tended to be less variable in their productions. Future research should examine longitudinal trajectories of accuracy and variability and consider a more culturally-appropriate definition of 'accuracy' in documenting bilingual speech sound development.

"Everybody Needs to Talk About Their Child": A Descriptive Phenomenological Study of Bereaved Parents' Experiences in Digital Storytelling.

Digital Storytelling (DS) is a narrative intervention that supports participants' ability to find meaning in their life experiences - in this case, bereavement after child death. Thirteen (N = 13) bereaved parents engaged in a DS workshop in which they created a story about the death of their child. Using a descriptive phenomenological approach, researchers explored participants' experience with child death via their completed digital stories. Results highlight connection as a pathway to meaning making for bereaved parents who participate in DS, specifically in regard to connection with other bereaved parents and connection with their deceased child via telling their story.

Mixed methods analysis of hospice staff perceptions and shared decision making practices in hospice.

PURPOSE: Shared decision making has been a long-standing practice in oncology and, despite a lack of research on the subject, is a central part of the philosophical foundation of hospice. This mixed methods study examined the perceptions of staff regarding shared decision making and their use of shared decision elements in hospice interdisciplinary team meetings. METHODS: The revised Leeds Attitude to Concordance scale (LatConII) was used to measure the attitudes of hospice staff toward shared decision making. Field notes and transcripts of hospice interdisciplinary team meetings that included family caregivers as participants were coded to identify 9 theory-driven shared decision making elements. The results were mixed in a matrix analysis comparing attitudes with practice. Three transcripts demonstrate the variance in the shared decision making process between hospice teams. RESULTS: Hospice staff reported overall positive views on shared decision making; however, these views differed depending on participants' age and position. The extent to which staff views were aligned with the observed use of shared decision making elements in hospice interdisciplinary team meetings varied. CONCLUSION: Policy and practice conditions can make shared decision making challenging during hospice interdisciplinary team meetings despite support for the process by staff. TRIAL REGISTRATION: This study is a sub-study of a parent study registered with clinicaltrials.gov (NCT02929108).

"It was terrible, I didn't sleep for two years": A mixed methods exploration of sleep and its effects among family caregivers of in-home hospice patients at end-of-life.

BACKGROUND: Due to overnight caregiving demands; exacerbation of high rates of anxiety, depression, and distress; and inadequate support, millions of family caregivers of patients receiving in-home hospice are at risk of poor sleep and negative health effects. AIM: To describe sleep experiences of family caregivers of in-home hospice patients and perceptions of these experiences on caregivers' wellbeing in the context of caregiver health and live-in status. DESIGN: Developed using the Symptom Management Model, this mixed methods study featured a concurrent nested design prioritizing qualitative reflexive thematic analysis. SETTING/PARTICIPANTS: About 47 family caregivers of in-home hospice patients from two randomized clinical trials (NCT03712410, NCT02929108) were interviewed (United States, 2021). Anxiety (GAD-7), depression (PHQ-9), quality-of-life (QOL) (CQLI-R), and self-rated health and energy were reported prior to interviews. RESULTS: Qualitative analysis revealed three themes: compromised sleep quality, factors influencing sleep, effects of sleep. 72.5% of hospice family caregivers described "fair" or "poor" sleep quality, with "interrupted" sleep and frequent night-waking due to "on-call" "vigilance" and anxiety. Negative effects included exhaustion, mental and physical health decline, and reduced caregiver function. Live-in caregivers reported higher mean depression scores (8.4 vs 4.3, p = 0.08), higher mean anxiety scores (7.7 vs 3.3, p = 0.06), and lower mean QOL scores (24.8 vs 33.6, p < 0.001) than live-out caregivers. Anxiety, depression, and QOL worsened as self-reported caregiver sleep quality decreased. Few caregivers had adequate support. CONCLUSION: End-of-life family caregivers experience disrupted sleep with negative effects and inadequate support. Clinicians must assess sleep, offer sleep interventions, and provide more supports to hospice family caregivers.

Facebook Online Support Groups for Hospice Family Caregivers of Advanced Cancer Patients: Protocol, Facilitation Skills and Promising Outcomes.

Research has demonstrated a lack of support for hospice caregivers and a higher than average level of self-reported anxiety and depression. While online support groups are gaining popularity, few protocols have been published, little research has demonstrated the skills required to facilitate, and virtually no data has explored the clinical outcomes affiliated with participation in such groups. This paper presents the preliminary experience and results of a clinical trial testing the use of online support groups designed to both educate and provide social support to caregivers of hospice cancer patients. A detailed protocol outlines educational strategies, discussion questions, and a blueprint outlining ways to engage participants. A review of field notes completed by the interventionist reveal specific facilitation skills and strategies used to engage participants. Finally, preliminary analysis of 78 participants shows the group is having a statistically significant impact on the caregiver depression.

The Effect of Digital Literacy on Participation in Social Media Clinical Trials in Cancer: Tailoring an Informed Consent Process.

Introduction: This study asked: (1) How does digital literacy influence one's decision to consent to a social media intervention study? (2) What is a brief way to assess individual digital literacy before an individual's decision to participate in a trial? and (3) How can a consent process be tailored around an individual's digital literacy level? Methods: We used an assessment tool to investigate digital literacy of those who chose to consent to a clinical trial and those who did not consent to the clinical trial but agreed to participate in a digital literacy study. Results A total of 161 hospice caregivers completed the digital literacy assessment. Older individuals and those who rated themselves as more proficient in the use of technology and social media were more likely to consent to the social media clinical trial. Conclusions: We found that asking participants to rate their technology skills and social media skills allows researchers to tailor a consent process. For those who are comfortable with technology and social media the traditional process is appropriate. For individuals that rate themselves with weaker technology and social media skills it is important that the consent process includes assurance they will receive adequate support in the use of the technology and the media. The next step is to test the assessment and tailoring of consent processes for a social media clinical trial. Clinical Trial # NCT02929108.

Older Adult Engagement With Facebook® Interventions: A Challenge for Nursing Research.

Facebook® is a popular platform for older adults, especially as they try to stay in contact with their family around the country. It is also a popular platform for hosting online support groups. The readily available, socially acceptable, and free platform holds many advantages not only for older adults but also for nurse researchers designing and implementing interventions for older adults. The literature is void of proven methods to measure individual engagement with the Facebook platform. The current article describes efforts to develop a measurement process and evaluate the impact that engagement with Facebook has on improved mental health outcomes for older adults. Scores were severely skewed and ranged from no engagement to very high engagement. Engagement differed based on sex, race, and living arrangements with patients. Further work in this area is needed if nurse researchers are to consider the role of engagement in social media interventions. [Journal of Gerontological Nursing, 48(7), 10-17.].

Assessment of Intelligibility in Children with Velopharyngeal Insufficiency: The Relationship between Intelligibility in Context Scale and Experimental Measures.

PURPOSE: The purpose of this study was to investigate the clinical application of the Intelligibility in Context Scale (ICS) instrument in children with velopharyngeal insufficiency (VPI). This study investigated the relationship between clinical speech outcomes and parental reports of speech intelligibility across various communicative partners. METHODS: The ICS was completed by the parents of 20 English-speaking children aged 4-12 years diagnosed with VPI. The parents were asked to rate their children's speech intelligibility across communication partners using a 5-point scale. Clinical metrics obtained using standard clinical transcription on the Picture-Cued SNAP-R Test were: (1) percentage of consonants correct (PCC), (2) percentage of vowels correct (PVC), and (3) percentage of phonemes correct (PPC). Nasalance from nasometer data was included as an indirect measure of nasality. Intelligibility scores obtained from naive listener's transcriptions and speech-language pathologists' (SLP) ratings were compared with the ICS results. RESULT: Greater PCC, PPC, PVC, and transcription-based intelligibility values were significantly associated with higher ICS values, respectively (r[20] = 0.84, 0.82, 0.51, and 0.70, respectively; p < 0.05 in all cases). There was a negative and significant correlation between ICS mean scores and SLP ratings of intelligibility (r = -0.74; p < 0.001). There was no significant correlation between ICS values and nasalance scores (r[20] = -0.28; p = 0.22). CONCLUSION: The high correlations obtained between the ICS with PCC and PPC measures indicate that articulation accuracy has had a great impact on parents' decision-making regarding intelligibility in this population. Significant agreement among ICS scores with naive listener transcriptions and clinical ratings supports use of the ICS in practice.

Agreements between speech language pathologists and naïve listeners' judgements of intelligibility in children with cleft palate.

Speech-language pathologists (SLPs) working in interdisciplinary craniofacial teams need to know how much their judgments of speech intelligibility could predict the patient's communication difficulties with non-clinical communicative partners. This study examines the relationship between experienced SLPs and naïve listeners in judgments of speech intelligibility in speakers with cleft palate. A speech perception study was conducted using speech samples from 20 speakers with velopharyngeal insufficiency (VPI) following cleft palate. Speech samples were presented to 70 naïve listeners and 10 SLPs who were experts in cleft palate treatment. Speech intelligibility scores from naïve listeners' orthographic transcriptions were obtained as the percentage of correctly identified words. Speech intelligibility scores from SLPs were obtained using a five-point rating scale. Spearman rank correlation indicated a very high level of overall agreement between naïve listeners and SLPs at the speaker level scores (rs = -.94, p < .001). While the listeners' judgment seems highly related across highly intelligible speakers, the differences in agreements increase when the speaker is unintelligible. The high correlations between scores for naïve listeners and SLPs suggest that speech intelligibility in children with VPI could be predicted by ratings done in the clinic by expert SLPs.

Digital storytelling: Narrating meaning in bereavement.

Individuals who cannot make sense of a significant death are more likely to experience bereavement complications than those who are able to reconcile their loss with existing or newly-developed ways of understanding the world. Digital Storytelling, a multi-media narrative technique, has been identified as a potential facilitator of meaning-making processes. In this secondary qualitative analysis, researchers described the meaning-making processes evident in bereaved individuals' (N = 14) personally-created digital stories, identifying sense making, benefit finding, continuing bonds, shifting identity, and addressing unfinished business. Findings support prior research and enrich emerging understandings of arts-based interventions as tools to facilitate and communicate meaning-making processes.