Volume 22 - Issue 2 - April 2024
Original Article
Children’s understanding of dying and death: A multinational grounded theory study
- Paula McPoland, Daniel H. Grossoehme, Denice C. Sheehan, Pamela Stephenson, Julia Downing, Theony Deshommes, Pascale Y.H. Gassant, Sarah Friebert
-
- Published online by Cambridge University Press:
- 24 March 2023, pp. 213-220
-
- Article
- Export citation
-
Objectives
The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which children directly involved with life-limiting conditions understand dying and death.
MethodsThis qualitative study obtained interview data from N = 44 5–18-year-old children in the USA, Haiti, and Uganda who were pediatric palliative care patients or siblings of patients. Of these, 32 were children with a serious condition and 12 were siblings of a child with a serious condition. Interviews were recorded, transcribed, verified, and analyzed using grounded theory methodology.
ResultsLoss of normalcy and of relationships emerged as central themes described by both ill children and siblings. Resilience, altruism, and spirituality had a bidirectional relationship with loss, being strategies to manage both losses and anticipated death, but also being affected by losses. Resiliency and spirituality, but not altruism, had a bidirectional relationship with anticipating death. Themes were consistent across the 3 samples, although the beliefs and behaviors expressing them varied by country.
Significance of resultsThis study partially fills an identified gap in research knowledge about ways in which children in 3 nations understand dying and death. While children often lack an adult vocabulary to express thoughts about dying and death, results show that they are thinking about these topics. A proactive approach to address issues is warranted, and the data identify themes of concern to children.
A survey of statistical methods utilized for analysis of randomized controlled trials of behavioral interventions
- Rebecca Tutino, Elizabeth Schofield, Rebecca M. Saracino, Leah Walsh, Emma Straus, Christian J. Nelson
-
- Published online by Cambridge University Press:
- 06 June 2023, pp. 221-225
-
- Article
- Export citation
-
Objectives
Given the many statistical analysis options used for randomized controlled trials (RCTs) of behavioral interventions and the lack of clear guidance for analysis selection, the present study aimed to characterize the predominate statistical analyses utilized in RCTs in palliative care and behavioral research and to highlight the relative strengths and weaknesses of each of these methods as guidance for future researchers and reform.
MethodsAll RCTs published between 2015 and 2021 were systematically extracted from 4 behavioral medicine journals and analyzed based on prespecified inclusion criteria. Two independent raters classified each of the manuscripts into 1 of 5 RCT analysis strategies.
ResultsThere was wide variation in the methods used. The 2 most prevalent analyses for RCTs were longitudinal modeling and analysis of covariance. Application of method varied significantly by sample size.
Significance of resultsEach statistical analysis presents its own unique strengths and weaknesses. The information resulting from this research may prove helpful for researchers in palliative care and behavioral medicine in navigating the variety of statistical methods available. Future discussion around best practices in RCT analyses is warranted to compare the relative impact of interventions in a more standardized way.
Dyadic sleep intervention for adult patients with cancer and their sleep-partner caregivers: A feasibility study
- Youngmee Kim, Amanda Ting, Thomas C. Tsai, Charles S. Carver
-
- Published online by Cambridge University Press:
- 14 June 2023, pp. 226-235
-
- Article
- Export citation
-
Objectives
Sleep disturbances are common among adult patients with cancer and their caregivers. To our knowledge, no sleep intervention to date has been designed to be provided to both patients with cancer and their caregivers simultaneously. This single-arm study aimed to pilot test the feasibility and acceptability, and to illustrate the preliminary efficacy on sleep efficiency of the newly developed dyadic sleep intervention, My Sleep Our Sleep (MSOS: NCT04712604).
MethodsAdult patients who were newly diagnosed with a gastrointestinal (GI) cancer and their sleep-partner caregivers (n = 20 persons: 10 dyads, 64 years old, 60% female patients, 20% Hispanic, 28 years relationship duration), both of whom had at least mild levels of sleep disturbance (Pittsburgh Sleep Quality Index [PSQI] ≥ 5) participated in this study. MSOS intervention consists of four 1-hour weekly sessions delivered using Zoom to the patient–caregiver dyad together.
ResultsWe were able to enroll 92.9% of the eligible and screened patient–caregiver dyads within 4 months. Participants reported high satisfaction in 8 domains (average 4.76 on a 1–5 rating). All participants agreed that the number of sessions, interval (weekly), and delivery mode (Zoom) were optimal. Participants also preferred attending the intervention with their partners. Both patients and caregivers showed improvement in sleep efficiency after completing the MSOS intervention: Cohen’s d = 1.04 and 1.47, respectively.
Significance of resultsResults support the feasibility and acceptability, as well as provide the preliminary efficacy of MSOS for adult patients with GI cancer and their sleep-partner caregivers. Findings suggest the need for more rigorous controlled trial designs for further efficacy testing of MSOS intervention.
Increased preparedness for caregiving among family caregivers in specialized home care by using the Carer Support Needs Assessment Tool Intervention
- Maria Norinder, Kristofer Årestedt, Lena Axelsson, Gunn Grande, Gail Ewing, Anette Alvariza
-
- Published online by Cambridge University Press:
- 06 June 2023, pp. 236-242
-
- Article
- Export citation
-
Objectives
Family caregivers often feel insufficiently prepared for a caregiving role, experiencing challenges and demands related to care at home that may negatively affect their own quality of life. Supportive interventions have been shown to influence negative effects, but more studies are needed. Therefore, this study aims to explore potential effects of the Carer Support Needs Assessment Tool Intervention on preparedness, caregiver burden, and quality of life among Swedish family caregivers in specialized home care.
MethodsThe study had a pre–post intervention design and was conducted at 6 specialized home care services in Sweden. Family caregivers who received the intervention completed a questionnaire, including the Preparedness for caregiving scale, Caregiver Burden Scale, and Quality of Life in Life-Threatening Illness – Family carer version, at 2 time points, baseline and follow up, about 5 weeks later. Data were analyzed using descriptive statistics and Wilcoxon signed-rank test.
ResultsAltogether, 33 family caregivers completed the baseline and follow-up assessment. A majority were retired (n = 26, 81%) and women (n = 19, 58%) and two-fifths had a university degree (n = 13, 41%). The family caregivers had significantly increased their preparedness for caregiving between the baseline and follow-up assessment (Mdn = 18 vs. 20, p = 0.002). No significant changes were found on caregiver burden or quality of life.
Significance of resultsThe results add to knowledge regarding the Carer Support Needs Assessment Tool Intervention’s potential to improve family caregiver outcomes. Findings suggest that the intervention may be used to improve the preparedness for caregiving and support among family caregivers in specialized home care.
The Healing through Arts (HeARTS) program for children bereaved by cancer: Pilot study findings from Singapore
- Saryna Ong, Travis Loh, Phyllis Wong, Irene Teo
-
- Published online by Cambridge University Press:
- 05 April 2023, pp. 243-250
-
- Article
- Export citation
-
Objectives
The article aims to investigate the feasibility, acceptability, and initial efficacy of a short-term 3-day art therapy group for children who have experienced parental death to cancer.
MethodsThe study utilized a pretest–posttest design and included children (n = 20) aged 7–12 years. The feasibility of the intervention was measured by recruitment ability, study compliance, and intervention adherence, while acceptability was assessed using a child-reported satisfaction survey. Efficacy was examined using the child-reported Pediatric Quality of Life Inventory (PedsQL), while the emotional, social, and behavioral functioning of children was measured using the parent-reported Strengths and Difficulties Questionnaire. Paired sample t-tests were used for analyses.
ResultsThe intervention was found to be feasible (80% recruitment rate and 100% session adherence). Acceptability was high, and all participants were satisfied and found the intervention to be helpful. While results did not reach statistical significance, improvements in psychosocial and physical quality of life were reported by all the children post-intervention and at the 3-month follow-up. Parent-reported a decrease in behavioral difficulties scores and an increase in prosocial behavior scores at post-intervention and at the 3-month follow-up.
Significance of resultsThe 3-day art therapy group intervention was shown to be feasible to conduct and acceptable to the recipients. The intervention shows promise in improving post-death adjustment and quality of life outcomes of children bereaved by parental death due to cancer that were maintained after 3 months. The use of art therapy groups to ameliorate difficulties associated with parental loss and to assist children in coping day-to-day difficulties should be further investigated.
The effectiveness of spiritual care training on medical students’ self-reported competencies: A quasi-experimental study
- Luciano Magalhães Vitorino, Pedro Henrique Machado Teixeira, Patricia Cabrelon Dominato, Maria Paula Cunha de Azevedo, Mariana Maciel Resende, Giancarlo Lucchetti
-
- Published online by Cambridge University Press:
- 12 April 2023, pp. 251-257
-
- Article
- Export citation
-
Objectives
To evaluate the effectiveness of spiritual care training on medical students’ self-reported competencies.
MethodsThis is a quasi-experimental (controlled and non-randomized) study including 115 Brazilian medical students. Participants were enrolled into 2 groups: fourth-year students (n = 64) who received spiritual care training and sixth-year students (n = 51) who did not receive this training – control group (i.e., usual teaching). Participants answered a self-reported Spiritual Care Competence Scale. Comparisons between groups were performed and effect sizes were reported.
ResultsProviding a spiritual care training resulted in significantly higher self-reported scores for the dimensions of “Assessment” (d = 0.99), “Improvement of care” (d = 0.69), “Counseling (d = 0.88),” “Referral” (d = 0.75), and “Total Spiritual Care” (d = 1.044) as compared to the control group. Likewise, 21 out of 27 items of the Spiritual Care Competence Scale were significantly higher for the intervention group, presenting effect sizes (d) ranging between 0.428 and 1.032.
Significance of resultsMedical students receiving spiritual care training showed greater self-reported competencies as compared to those in the usual teaching. These results reinforce the importance of promoting spirituality teaching in medical schools.
Assessment of emotional distress in palliative care: Edmonton Symptom Assessment System-revised (ESAS-r) vs Distress Thermometer
- Leticia Ascencio Huertas, Silvia Rosa Allende Pérez, Adriana Peña Nieves
-
- Published online by Cambridge University Press:
- 27 October 2023, pp. 258-264
-
- Article
- Export citation
-
Objectives
To evaluate the sensitivity and specificity of the Distress Thermometer (DT) as a screening tool for emotional distress in oncological palliative care patients and to compare the DT with the Edmonton Symptom Assessment System-revised (ESAS-r) and the gold standard to determine the most appropriate assessment method in palliative psychological care.
MethodsData were collected from psychological screening tests (ESAS-r and DT), and clinical interviews (gold standard) were conducted by a clinical psychologist specialist in palliative oncology from January 2021 to January 2022 in an oncology palliative care service.
ResultsThe sample consisted of 356 first-time patients with a diagnosis of advanced cancer in palliative care. The most frequently reported oncological diagnoses were gastrointestinal tract (49.3%) and breast (18.3%). Most patients were female (n = 206; 57.9%), 60.4% were married/with a partner, 55.4% had between 6 and 9 years of schooling, and a median age of 57 (range, 46–65) years. The cutoff of the DT was 5, with a sensitivity of 75.88% and specificity of 54.3%. Emotional problems (sadness and nervousness) had a greater area under the curve (AUC) when measured using the DT than the ESAS-r; however, only in the case of the comparative sadness and discouragement was the difference between the AUC marginally significant.
Significance of resultsThe use of the DT as a screening tool in oncological palliative care is more effective in the evaluation of psychological needs than the ESAS-r. The DT, in addition to evaluation by an expert psychologist, allows for a more comprehensive identification of signs and symptoms to yield an accurate mental health diagnosis based on the International Classification of Diseases-11th Revision and/or Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition.
Exploring the occurrence and the risk factors of the desire for hastened death and depression in people with early-stage dementia in Greece
- Sotiria Kostopoulou, Athina Pinelopi Varveri, Maria Nikoloudi, Eleni Tsilika, Efi Parpa, Anna Zygogianni, Kyriaki Mystakidou
-
- Published online by Cambridge University Press:
- 10 July 2023, pp. 265-273
-
- Article
- Export citation
-
Objectives
To assess the factors associated with desire for hastened death and depression in early-stage dementia as well as the association between them. Also, to explore the mediator and moderator role of age in the relationship between depression and desire for hasten death.
MethodsA prospective cross-sectional study including 100 patients diagnosed with early-stage dementia from a rehabilitation center between December 2018 and July 2019. Measurement tools used were the Mini-Mental State Examination, the Greek Montreal Cognitive Assessment, the Greek Schedule of Attitudes toward Hastened Death, and the Geriatric Depression Scale-15 item. Patients diagnosed with dementia as a result of Stroke history were excluded.
ResultsFactors of multifactorial analysis significantly associated with desire for hastened death were as follows: age (p = 0.009), marital status (p = 0.001), and depression (p < 0.001). The factor significantly associated with depression was age (p = 0.001). Also, a mediation/moderation analysis has shown that depression and age are significant predictors of desire for hasten death.
Significance of resultsThe desire for hastened death and depression in people diagnosed with early-stage dementia includes many components. Younger patients, men, higher educated patients, single, childless, and those with higher depression scores had higher desire for hastened death, while men and older patients had higher scores of desire for depression. Our study provides important information about the desire for hastened death and depression in early-stage dementia, their risk factors, and their association.
Development and psychometric evaluation of the Symptom Self-Management Behaviors Tool for adolescents/young adults with cancer
- Kristin Stegenga, Jeanne M. Erickson, Lauri Linder, Catherine Fiona Macpherson, R.K. Elswick, Jr., Suzanne Ameringer
-
- Published online by Cambridge University Press:
- 30 June 2023, pp. 274-280
-
- Article
- Export citation
-
Objectives
Adolescents and Young Adults (AYAs) with cancer experience symptoms related to disease and treatment. To manage these symptoms, they need to develop self-management behaviors, yet no tool exists to assess these behaviors. The Symptom Self-Management Behaviors Tool (SSMBT) was developed to meet this need.
MethodsThe study consisted of 2 phases. Phase 1 evaluated content validity, and Phase 2 evaluated reliability and validity. The SSMBT initially contained 14 items with 2 dimensions: (1) behaviors used to Manage Symptoms and (2) behaviors used to communicate with providers regarding symptoms. Four oncology professionals and 5 AYAs with cancer assessed the content validity. Evaluation of reliability and validity involved 61 AYAs with cancer. Reliability was evaluated using Cronbach’s alpha. Construct validity was assessed with factor analysis. Discriminant validity was assessed using associations with symptom severity and distress.
ResultsContent validity evaluation supported the importance of the items. Factor analysis supported a two-factor structure: Manage Symptoms (8 items) and Communicate with Healthcare Providers (4 items) subscales. Internal consistency reliability for the total SSMBT was acceptable with Cronbach’s alpha = 0.74. Cronbach’s alpha value for the Manage Symptoms subscale was α = 0.69 and for the Communicate with Healthcare Providers subscale was α = 0.78. The SSMBT total and the Manage Symptoms subscale scores were moderately correlated with symptom severity (r = 0.35, p = 0.014; r = 0.44, p = 0.002, respectively), partially supporting discriminant validity.
Significance of resultsSystematic assessment of behaviors AYAs use is critical for clinical practice and evaluate interventions to improve self-management. The SSMBT demonstrates initial reliability and validity but requires further evaluation for clinical interpretation and future use.
The experiences of families of children with cancer during the COVID-19 pandemic: A qualitative exploration
- Malcolm S. Sutherland-Foggio, Charis J. Stanek, Kimberly Buff, Leena Nahata, Terrah Foster-Akard, Cynthia A. Gerhardt, Micah A. Skeens
-
- Published online by Cambridge University Press:
- 10 August 2023, pp. 281-288
-
- Article
-
- You have access Access
- Open access
- HTML
- Export citation
-
Objectives
The COVID-19 pandemic posed new challenges to physical and psychological well-being. Families with pediatric cancer patients were particularly vulnerable due to changes like children staying at home, hospital policy shifts, and caring for an immunocompromised child. Limited research exists on COVID-19's effects on these families. This study aimed to assess the pandemic's impact and identify psychosocial support gaps.
MethodsParticipants (N = 256) were parents of children with cancer recruited via Facebook in partnership with Momcology®, a community-based organization for pediatric cancer, between February and May 2021. Qualitative analyses used open-ended responses about the pandemic’s impact on the family.
ResultsAnalysis revealed 6 themes, with positive and negative sentiments: family changes (n = 169; 61% negative), social isolation (n = 154; 100% negative), emotional impact (n = 143; 89% negative), school changes (n = 126; 80% negative), health-care changes (n = 111; 96% negative), and physical health (n = 49; 73% negative). Family changes overarched all themes and included financial strains, at-home schooling, and family bonding. Parents highlighted social isolation and the emotional impact of pandemic-related changes. School changes forced parents to balance remote-work and childcare. Health-care changes limited resources and visitation. Parents reported their children were less active and slept less but had fewer illnesses.
Significance of resultsMany common pandemic challenges were exacerbated by the stress of caring for a child with cancer. Parents struggled most with loss of social support and feelings of isolation. Careful consideration should be given to providing resources for parents of children with cancer and their families.
Frequency of vaccine hesitancy among patients with advanced cancer
- Michael Tang, Yvonne Heung, Bryan Fellman, Eduardo Bruera
-
- Published online by Cambridge University Press:
- 01 August 2023, pp. 289-295
-
- Article
- Export citation
-
Background
Vaccine hesitancy has become prevalent in society. Vulnerable populations, such as those with cancer, are susceptible to increased morbidity and mortality from diseases that may have been prevented through vaccination.
ObjectivesOur objective was to determine patient perception of vaccine efficacy and safety and sources of information that influence decisions.
MethodsThis study was a prospective cross-sectional survey trial conducted from March 10, 2022, to November 1, 2022, at a Supportive Care Clinic. Patients completed the survey with a research assistant or from a survey link. Vaccine hesitancy was defined as a response of 2 or more on the Parent Attitudes About Childhood Vaccines (PACV-4). Perception on vaccine safety and efficacy along with the importance of sources of information were determined by a questionnaire.
ResultsOf the 72 patients who completed the PACV-4, 30 were considered vaccine-hesitant (42%). Of those who completed the survey alone (35), 23 (66%) were vaccine-hesitant; and of those who completed the survey with the help of a study coordinator (37), 7 (19%) were vaccine-hesitant. The most important source for decision-making was their doctor (82%, 95% CI 73–89), followed by family (42%, 95% CI 32–52), news/media (31%, 95% CI 22–41), and social media (9%, 95% CI 4–16). Clinical and demographic factors including age, gender, race/ethnicity, education level, and location of residence were not associated with vaccine hesitancy.
Significance of resultsVaccine hesitancy is present among patients with advanced cancer. The high value given to the doctor’s recommendation suggests that universal precautions regarding vaccine recommendation may be an effective intervention.
Neuroblastoma survivors’ self-reported late effects, quality of life, health-care use, and risk perceptions
- Jessica Tan, Jordana K. McLoone, Claire E. Wakefield, Natasha Nassar, Richard J. Cohn, Christina Signorelli
-
- Published online by Cambridge University Press:
- 14 June 2023, pp. 296-305
-
- Article
- Export citation
-
Background
Survivors of childhood neuroblastoma are at risk of multiple treatment-related health problems (late effects), impacting their quality of life. While late effects and quality of life among Australia and New Zealand (ANZ) childhood cancer survivors have been reported, the outcomes of neuroblastoma survivors specifically have not been reported, limiting critical information to inform treatment and care.
MethodsYoung neuroblastoma survivors or their parents (as proxy for survivors <16 years) were invited to complete a survey and optional telephone interview. Survivors’ late effects, risk perceptions, health-care use, and health-related quality of life were surveyed and analyzed using descriptive statistics and linear regression analyses. In-depth interviews explored participants’ experiences, knowledge, and perception of late effects and information needs. Thematic content analysis was used to summarize the data.
ResultsThirty-nine neuroblastoma survivors or parents completed questionnaires (median age = 16 years, 39% male), with 13 also completing interviews. Thirty-two participants (82%) reported experiencing at least 1 late effect, most commonly dental problems (56%), vision/hearing problems (47%), and fatigue (44%). Participants reported high overall quality of life (index = 0.9, range = 0.2–1.0); however, more participants experienced anxiety/depression compared to the population norm (50% met criteria versus 25%, χ2 = 13, p < 0.001). Approximately half of participants (53%) believed they were at risk of developing further late effects. Qualitatively, participants reported knowledge gaps in understanding their risk of developing late effects.
ConclusionMany neuroblastoma survivors appear to experience late effects, anxiety/depression and have unmet cancer-related information needs. This study highlights important areas for intervention to reduce the impact of neuroblastoma and its treatment in childhood and young adulthood.
Some differences between social work, spiritual care, and psychology: Content variance in end-of-life conversations
- Michael Schultz, Svetlana Baziliansky, Inbal Mitnik, Nirit Ulitzur, Salvatore Campisi-Pinto, Simon Givoli, Gil Bar-Sela, Daniela Zalman
-
- Published online by Cambridge University Press:
- 22 August 2023, pp. 306-313
-
- Article
- Export citation
-
Objectives
Within the multidisciplinary team, there can sometimes be lack of clarity as to the specific different contributions of each of the psycho-social-spiritual professionals: social workers, psychologist, and spiritual caregivers. This study examined the content of their end-of-life conversations with patients.
MethodsA total of 180 patients with terminal cancer received standard multidisciplinary care, including conversations with a social worker, psychologist, and spiritual caregiver. After each patient’s death, these professionals reported using a structured tool which content areas had arisen in their conversations with that patient.
ResultsAcross all content areas, there were significant differences between social work and spiritual care. The difference between social work and psychology was slightly smaller but still quite large. Psychology and spiritual care were the most similar, though they still significantly differed in half the content areas. The differences persisted even among patients who spoke with more than 1 kind of professional. The 6 content areas examined proved to subdivide into 2 linked groups, where patients speaking about 1 were more likely to speak about the others. One group, “reflective” topics (inner and transpersonal resources, interpersonal relationships, one’s past, and end of life), included all those topics which arose more often with spiritual caregivers or psychologists. The second group, “decision-making” topics (medical coping and life changes), was comprised of those topics which arose most commonly with social workers, bridging between the medical and personal aspects of care and helping patients navigate their new physical, psychological, and social worlds.
Significance of resultsThese findings help shed light on the differences, in practice, between patients’ conversations with social workers, psychologists, and spiritual caregivers and the roles these professionals are playing; can aid in formulating individualized care plans; and strengthen the working assumption that all 3 professions contribute in unique, complementary ways to improving patients’ and families’ well-being.
Nurses’ models of spiritual care: A cross-sectional survey of American nurses
- Rita Mascio, Sandra Lynch, Jane L. Phillips, Annmarie Hosie, Megan Best
-
- Published online by Cambridge University Press:
- 12 July 2023, pp. 314-324
-
- Article
- Export citation
-
Objectives
Despite there being many models for how spiritual care should be provided, the way nurses actually provide spiritual care often differs from these models. Based on the premise that the way a person enacts their work role is related to how they understand that role, this study aims to describe the qualitatively different ways that nurses understand their spiritual care role.
MethodsA convenience sample of 66 American nurses completed an anonymous, online questionnaire about what spiritual care means for them and what they generally do to provide spiritual care. Their responses were analyzed phenomenographically.
ResultsFour qualitatively different ways of understanding emerged: active management of the patient’s experience, responsive facilitation of patient’s wishes, accompaniment on the patient’s dying journey, and empowering co-action with the patient. Each understanding was found to demonstrate a specific combination of 5 attributes that described the spiritual care role: nurse directivity, the cues used for spiritual assessment, and the nurse’s perception of intimacy, the patient, and the task.
Significance of resultsThe findings of this study may explain why nurses vary in their spiritual care role and can be used to assess and develop competence in spiritual care.
The relationship between nursing students’ compassion competencies and perceptions of spirituality and spiritual care
- Aytap Dincer, Bahar Çiftçi
-
- Published online by Cambridge University Press:
- 18 April 2023, pp. 325-330
-
- Article
- Export citation
-
Objectives
The present study was conducted to examine the relationship between nursing students’ compassion competencies and their perceptions of spirituality and spiritual care.
MethodsThe population of the study consisted of nursing students over the age of 18 years who were educated at the nursing faculty of a state university in Turkey between May and June 2022. The study was completed with 263 student nurses. The “Sociodemographic Characteristics Form,” “Compassion Competency Scale,” and “Spirituality and Spiritual Care Rating Scale” were used to collect the data. Frequencies, percentages, mean values, standard deviations, and Pearson Correlation Analysis were used to evaluate the data.
ResultsThe nursing students were found to have a high level of compassion competency (4.04 ± 0.57). It was also found that the students had moderate (54.76 ± 5.35) perceptions of spirituality and spiritual care. On the other hand, there was a moderate and positive relationship between the total mean scores of “Compassion Competency” and “Perceptions of Spirituality and Spiritual Care” (p > 0.05).
Significance of resultsIt was concluded that as nursing students’ compassion competencies increased, their perceptions of spirituality and spiritual care also increased.
The impact of caring on caregivers of patients with life-threatening organ failure
- Geana Paula Kurita, Inge Eidemak, Sille Larsen, Palle Bekker Jeppesen, Louise Bangsgaard Antonsen, Stig Molsted, Ylian Serina Liem, Tania Pressler, Per Sjøgren
-
- Published online by Cambridge University Press:
- 27 April 2023, pp. 331-337
-
- Article
- Export citation
-
Objectives
This study aimed at characterizing 3 populations of family/friend caregivers of patients with different life-threatening organ failure regarding health-related quality of life, caregiver burden, and dyadic coping.
MethodsThree cross-sectional (population) studies were conducted at a tertiary hospital in Denmark (2019–2020). Patients with renal failure (RF), cystic fibrosis (CF), and intestinal failure (IF) were asked to designate the closest person with ≥18 years old involved in the care (caregiver) to participate in this study. Number of caregivers included were RF = 78, CF = 104, and IF = 73. Electronic questionnaires were filled in by caregivers to assess health-related quality of life and caregiver burden and by caregivers and respective patients to assess dyadic coping.
ResultsThe 3 caregiver groups had self-perception of poor health and energy; however, caregivers of CF patients perceived their physical role functioning better than those caregiving for RF and IF patients (p = 0.002). The level of caregiver burden was reported as not high, but caregivers used in average 13 hours/day for caring. Moreover, cleaning tasks (p = 0.005) and personal care (p = 0.009) were more demanding in RF and IF patients. Caregivers also did not differ regarding dyadic coping. When comparing patients and caregivers, stress communication by oneself and the partner differed (p < 0.001).
Significance of resultsCaregivers spent many hours in the care role, they reported poor health, and dyadic coping may be improved. Interventions in caregivers of patients with life-threatening organ failure could help to improve care management at home, caregiver’s health, and dyadic coping between caregiver and patient and consequently reduce caregiver burden.
The experience of living with malignant meningioma
- Andrea Daniela Maier, Sara Nordentoft, Tiit Mathiesen, Rikke Guldager
-
- Published online by Cambridge University Press:
- 24 May 2023, pp. 338-346
-
- Article
- Export citation
-
Objectives
Meningiomas are the most common, primary intracranial tumor and most are benign. Little is known of the rare patient group living with a malignant meningioma, comprising 1–3% of all meningiomas. Our aim was to explore how patients perceived quality of daily life after a malignant meningioma diagnosis.
MethodsThis qualitative explorative study was composed of individual semi-structured interviews. Eligible patients (n = 12) were selected based on ability to participate in an interview, from a background population of 23 patients diagnosed with malignant meningioma at Rigshospitalet from 2000 to 2021. We performed an inductive thematic analysis following Braun and Clarke’s guidelines.
ResultsEight patients were interviewed. The analysis revealed 4 overarching themes: (1) perceived illness and cause of symptoms, (2) identity, roles, and interaction, (3) threat and uncertainty of the future, and (4) belief in authority. The perceived quality of daily life is negatively impacted by the disease. Patients experience a shift in self-concept and close interactions, and some struggle with accepting a new everyday life. Patients have a high risk of discordant prognostic awareness in relation to health-care professionals.
Significance of resultsWe provide a much-needed patient-centered perspective of living with malignant meningioma: quality of life was affected by perception of threat and an uncertainty of the future. Perception of illness and the interpretation of the cause of symptoms varied between subjects, but a common trait was that patients’ identity, roles, and interactions were affected. Shared decision-making and a strengthened continuity during follow-up could aid this rare patient group.
Community perspectives on structural barriers to dying well at home in Canada
- Wing-Sun Chan, Laura Funk, Marian Krawczyk, S. Robin Cohen, Maria Cherba, Carren Dujela, Kelli Stajduhar
-
- Published online by Cambridge University Press:
- 28 July 2023, pp. 347-353
-
- Article
-
- You have access Access
- Open access
- HTML
- Export citation
-
Objectives
To analyze how structural determinants and barriers within social systems shape options for dying well at home in Canada, while also shaping preferences for dying at home.
MethodsTo inform a descriptive thematic analysis, 24 Canadian stakeholders were interviewed about their views, experiences, and preferences about dying at home. Participants included compassionate community advocates, palliative care professionals, volunteers, bereaved family caregivers, residents of rural and remote regions, service providers working with structurally vulnerable populations, and members of francophone, immigrant, and 2SLGBTQ+ communities.
ResultsAnalysis of stakeholders’ insights and experiences led to the conceptualization of several structural barriers to dying well at home: inaccessible public and community infrastructure and services, a structural gap in death literacy, social stigma and discrimination, and limited access to relational social capital.
Significance of resultsAging in Canada, as elsewhere across the globe, has increased demand for palliative care and support, especially in the home. Support for people wishing to die at home is a key public health issue. However, while Canadian policy documents normalize dying in place as ideal, it is uncertain whether these fit with the real possibilities for people nearing the end of life. Our analysis extends existing research on health equity in palliative and end-of-life care beyond a focus on service provision. Results of this analysis identify the need to expand policymakers’ structural imaginations about what it means to die well at home in Canada.
Parental perspectives on the clinician’s approach to serious illness communication: A qualitative study
- Nicholas Mills, Megan Chapman, Ingrid Sutherland, Lynn Gillam, Anna Collins
-
- Published online by Cambridge University Press:
- 01 August 2023, pp. 354-359
-
- Article
- Export citation
-
Objectives
To explore the perceptions of parents caring for a child with a life-limiting condition on approaches to communication used by clinicians engaging in routine serious illness communication.
MethodsAn exploratory qualitative design was used, employing a thematic analysis of data derived through semi-structured interviews which presented hypothetical vignettes of serious illness conversations to elicit parental perspectives. Adult parents of children with a life-limiting condition, in a stable phase of care, known to the Neurodevelopment and Disability Department of a tertiary Children’s Hospital in Melbourne, Australia, were purposively sampled to achieve a broad representation of relevant clinical and sociodemographic factors.
ResultsEleven parents (72% female) of children aged 7 months to 18 years participated. Two major themes characterized parental perspectives on serious illness communication: “Approaches clinicians can use to lay the foundation for quality communication” including checking in, validation, aligning with hopes and a commitment to listening and being present; and “Approaches clinicians can use to aid the delivery of information” including honesty and compassion, presenting possibilities, providing a plan, and conveying the clinician’s experience.
Significance of resultsThis study provides novel insights into the perspectives of parents of children with life-limiting conditions that inform how clinicians may best approach serious illness communication. The findings highlight the need for clinicians working in pediatric health care to be cognizant of parents’ needs before and during conversations. Laying the foundation for quality communication is important alongside the approaches outlined that aid in the delivery of information.
The effects of illness perception on death anxiety and satisfaction with life in patients with advanced gastrointestinal cancer
- Gülcan Bahçecioğlu Turan, Hilal Türkben Polat
-
- Published online by Cambridge University Press:
- 25 August 2023, pp. 360-366
-
- Article
- Export citation
-
Objectives
This study was conducted to determine the effects of illness perception on death anxiety and satisfaction with life in patients with advanced gastrointestinal cancer.
MethodsThis cross-sectional and correlational study was conducted with 125 patients with cancer who were admitted to the oncology clinic of a university hospital in the Central Anatolian Region of Turkey between March and December 2022 and who met the research criteria and accepted to participate in the study. The data were collected with “Patient descriptive information form,” “Brief Illness Perception Questionnaire (BIPQ),” “Scale of Death Anxiety (SDA),” and “Satisfaction with Life Scale (SWLS).”
ResultsIt was found that mean BIPQ score of the patients was 39.54 ± 12.82, the mean SDA score was 8.02 ± 3.16, and the mean SWLS score was 14.74 ± 5.19. BIPQ total score was found to affect SDA total score positively (β = .751) and SWLS total score negatively (β = − .591). SDA total score was found to affect SWLS total score negatively (β = −.216) (p < .05).
Significance of resultsIt was found that patients with advanced gastrointestinal cancer had moderate level of illness perception and life satisfaction, and high death anxiety. It was found that as illness perception of the patients increased, their death anxiety increased and satisfaction with life decreased. In addition, it was found that as the death anxiety of patients increased, their satisfaction with life decreased.