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The aim was to understand the processes of therapeutic changes in Meaning-Centered Group Psychotherapy (MCGP) in a Portuguese sample.
Method
Adult cancer patients with distress motivated to participate in MCGP were identified; descriptive and narrative analyses were performed on the session content.
Results
The sample had 24 participants (mean age: 63.43 years); the majority were females (75%), with a median academic degree (54%). Breast cancer was most frequent (67%) at the localized stage (71%). The narrative analysis defined seven categories according to the MCGP themes. In “Moments with Meaning (MwM),” the most relevant dimensions were related to interpersonal relations, the moment of diagnosis, and personal achievements. This category established relations with almost all other categories, as did the category “historical sources of meaning (SoM).” The category “identity before and after cancer diagnosis” was only related to “attitudinal SoM” and “transitions.” Historical SoM had two dimensions, “past” and “present and future” legacies, in which prominent topics related to family, childhood, achieved goals, and values to pass to others explored. Attitudinal SoM established relations only with the category “creative SoM,” in which “courage” and “responsibility” were the main dimensions, which were also related to “MwM,” “historical,” and “attitudinal SoM.” Experiential SoM, with the main dimension “love,” was related to “MwM” and “historical SoM.” Transitions only established relations with “historical SoM” and “identity before and after cancer.”
Significance of results
The findings that “MwM” and “historical SoM” were the categories which established a solid pattern of relations suggest that these are the main psychotherapy topics that can have more influence for the participants; one explanation is that these categories imply a concrete way of thinking, which is easier to understand. This process of therapeutic changes must be integrated in a cultural context, as it is well known to have an impact upon the “meaning” of life.
The objectives of this study were to obtain patient evaluations of the content, structure, and delivery modality of Meaning-Centered Pain Coping Skills Training (MCPC), a novel psychosocial intervention for patients with advanced cancer and pain. MCPC aims to help patients connect with valued sources of meaning in their lives (e.g., family relationships), while providing training in evidence-based cognitive and behavioral skills (e.g., guided imagery) to reduce pain.
Methods
Semi-structured interviews were conducted with 12 patients with stage IV solid tumor cancers and persistent pain. Transcripts were analyzed using methods from applied thematic analysis.
Results
When evaluating MCPC's educational information and skills training descriptions, participants described ways in which this content resonated with their experience. Many coped with their pain and poor prognosis by relying on frameworks that provided them with a sense of meaning, often involving their personally held religious or spiritual beliefs. They also expressed a need for learning ways to cope with pain in addition to taking medication. A few participants offered helpful suggestions for refining MCPC's content, such as addressing common co-occurring symptoms of sleep disturbance and fatigue. Concerning MCPC's structure and delivery modality, most participants preferred that sessions include their family caregiver and described remote delivery (i.e., telephone or videoconference) as being more feasible than attending in-person sessions.
Significance of results
Participants were interested in an intervention that concurrently focuses on learning pain coping skills and enhancing a sense of meaning. Using remote delivery modalities may reduce access barriers (e.g., travel) that would otherwise prevent many patients from utilizing psychosocial services.
Demoralization is prevalent in patients with life-limiting chronic illnesses, many of whom reside in rural areas. These patients also have an increased risk of disease-related psychosocial burden due to the unique health barriers in this population. However, the factors affecting demoralization in this cohort are currently unknown. This study aimed to examine demoralization amongst the chronically ill in Lithgow, a town in rural New South Wales, Australia, and identify any correlated demographic, physical, and psychosocial factors in this population.
Method
A cross-sectional survey of 73 participants drawn from Lithgow Hospital, the adjoining retirement village and nursing home, assessing correlating demographic, physical, psychiatric, and psychosocial factors.
Results
The total mean score of the DS-II was 7.8 (SD 26.4), and high demoralization scores were associated with the level of education (p = 0.01), comorbid condition (p = 0.04), severity of symptom burden (p = <0.001), depression (p = <0.001), and psychological distress (p = <0.001). Prevalence of serious demoralization in this population was 27.4% according to a cutoff of a DS-II score ≥11. Of those, 11 (15%) met the criteria for clinical depression, leaving 9 (12.3%) of the cohort demoralized but not depressed.
Significance of results
Prevalence of demoralization was high in this population. In line with the existing literature, demoralization was associated with the level of education, symptom burden, and psychological distress, demonstrating that demoralization is a relevant psychometric factor in rural populations. Further stratification of the unique biopsychosocial factors at play in this population would contribute to better understanding the burdens experienced by people with chronic illness in this population and the nature of demoralization.
Latino-advanced cancer patients engage in advance care planning (ACP) at lower rates than non-Latino patients. The goal of the present study was to understand patients' and caregivers' preferred methods of communicating about ACP.
Methods
Patients and caregivers were interviewed about cultural, religious, and familial beliefs that influence engagement in ACP and preferences for ACP communication.
Results
Findings highlighted that Latino patients respect doctors' medical advice, prefer the involvement of family members in ACP discussions with doctors, hold optimistic religious beliefs (e.g., belief in miracles) that hinder ACP discussions, and prefer culturally competent approaches, such as using their native language, for learning how to discuss end-of-life (EoL) care preferences.
Significance of results
Key cultural, religious, and familial beliefs and dynamics influence Latino engagement in ACP. Patients prefer a family-centered, physician informed approach to discussing ACP with consideration and incorporation of their religious medical beliefs about EoL care. Promising targets for improving the communication of and engagement in ACP include integrating cultural and religious beliefs in ACP discussions, providing information about ACP from the physician, involving family members in ACP discussions and decision-making, and giving instructions on how to engage in ACP discussions.
Despite its established benefits, palliative care (PC) is not well known among patients and family/caregivers. From a nationally representative survey, we sought to assess the following associated with PC: knowledge, knowledge sources, and beliefs.
Methods
Data were drawn from the Health Information National Trends Study (HINTS 5 Cycle 2), a cross-sectional, survey of non-institutionalized adults aged 18+ years in the USA. Data were weighted and assessed by proportional comparison and multivariable logistic regression.
Results
A total of 3504 respondents were identified, and approximately 29% knew about PC. In the adjusted model, less PC knowledge was associated with: lower age (those aged <50), male gender, lower education (<high school graduation or high school graduate), and non-internet users. A little over half (55%) of respondents accessed healthcare providers first for PC information, and 80% considered providers the most trusted source of PC information. Most of the participants strongly/somewhat agreed that the goal of PC is to help friends and family cope with a patient's illness (90.6%), offer social and emotional support (93.4%), and manage pain and other physical symptoms (95.1%). Similarly, a majority (83.3%) strongly/somewhat agreed that it is a doctor's obligation to inform all patients with cancer about the option of PC.
Significance of results
PC knowledge was generally low (1-in-3 respondents knew of PC), with significant differences according to age, gender, education, and internet use. These data provide a baseline from which PC education policies and interventions may be measured.
Nursing assessments have been recommended for the daily screening for delirium; however, the utility of individual items have not yet been tested. In a first step in establishing the potential of the electronic Patient Assessment-Acute Care (ePA-AC) as such, the impact of delirium on the functional domains was assessed.
Method
In this prospective observational cohort study, 277 patients were assessed and 118 patients were delirious. The impact of delirium on functional domains of the ePA-AC related to self-initiated activity, nutrition, and elimination was determined with simple logistic regressions.
Results
Patients with delirium were older, sicker, were more commonly sedated during the assessment, stayed longer in the intensive care unit (ICU) and floors, and less commonly discharged home. A general pattern was the loss of abilities and full functioning equivalent to global impairment. For self-initiated mobility, in and out of the bed sizable limitations were noted and substantial inability to transfer caused friction and shearing. Similarly, any exhaustion and fatigue were associated with delirium. For self-initiated grooming and dressing, the impairment was greater in the upper body. Within the nutritional domain, delirium affected self-initiated eating and drinking, the amount of food and fluids, energy and nutrient, as well as parenteral nutrition requirement. In delirious patients, the fluid demand was rather increased than decreased, tube feeding more often required and dysphagia occurred. For the elimination domain, urination was not affected — of note, most patients were catheterized, whereas abilities to initiate or control defecation were affected.
Significance of results
Delirium was associated with sizable impairment in the level of functioning. These impairments could guide supportive interventions for delirious patients and perspectively implement nursing instruments for delirium screening.
Like any therapy, acupuncture is effective for some patients, while not helpful for others. Understanding from a patients' perspective what makes one respond or not to acupuncture can help guide further intervention development. This study aimed to identify factors that influence the perception of acupuncture's therapeutic effect among cancer survivors with insomnia.
Method
We conducted post-treatment semi-structured interviews with cancer survivors who were randomized to the acupuncture group in a clinical trial for the treatment of insomnia. Survivors were categorized into Responders and Non-Responders to acupuncture treatment based on the change in the Insomnia Severity Index with a reduction of eight points or greater as the cut-off for the response. An integrated approach to data analysis was utilized by merging an a priori set of codes derived from the key ideas and a set of codes that emerged from the data through a grounded theory approach. Codes were examined for themes and patterns.
Results
Among 28 cancer survivors interviewed, 18 (64%) were classified as Responders. Participants perceived the ability to respond to acupuncture as dependent on treatment that effectively: (1) alleviated co-morbidities contributing to insomnia, (2) supported sleep hygiene practices, and (3) provided a durable therapeutic effect. Acupuncture treatment that did not address one of these themes often detracted from positive treatment outcomes and diminished perceived benefit from acupuncture.
Significance of results
We identified patient-perceived contributors to response to acupuncture, such as co-morbid medical conditions, adequate support for sleep hygiene practices, and temporary therapeutic relief. Addressing these factors may improve the overall effectiveness of acupuncture for insomnia.
Sleep disturbances are prevalent in cancer patients, especially those with advanced disease. There are few published intervention studies that address sleep issues in advanced cancer patients during the course of treatment. This study assesses the impact of a multidisciplinary quality of life (QOL) intervention on subjective sleep difficulties in patients with advanced cancer.
Method
This randomized trial investigated the comparative effects of a multidisciplinary QOL intervention (n = 54) vs. standard care (n = 63) on sleep quality in patients with advanced cancer receiving radiation therapy as a secondary endpoint. The intervention group attended six intervention sessions, while the standard care group received informational material only. Sleep quality was assessed using the Pittsburgh Sleep Quality Index (PSQI) and Epworth Sleepiness Scale (ESS), administered at baseline and weeks 4 (post-intervention), 27, and 52.
Results
The intervention group had a statistically significant improvement in the PSQI total score and two components of sleep quality and daytime dysfunction than the control group at week 4. At week 27, although both groups showed improvements in sleep measures from baseline, there were no statistically significant differences between groups in any of the PSQI total and component scores, or ESS. At week 52, the intervention group used less sleep medication than control patients compared to baseline (p = 0.04) and had a lower ESS score (7.6 vs. 9.3, p = 0.03).
Significance of results
A multidisciplinary intervention to improve QOL can also improve sleep quality of advanced cancer patients undergoing radiation therapy. Those patients who completed the intervention also reported the use of less sleep medication.
Social support has been reported as beneficial for the psychological functioning of people coping with a disease. The objective of this study was to verify whether levels of perceived social support are associated with psychosocial functioning in women who have had a mastectomy and whether specific types of social support are linked to specific indices of functioning.
Method
Seventy women with a history of mastectomy completed questionnaires measuring their psychosocial functioning as related to their health status: Disease-Related Appraisal Scale, Acceptance of Life with the Disease Scale and Beck Depression Inventory. All participants also completed a measure of perceived social support (Disease-Related Social Support Scale).
Results
Women who reported higher levels of perceived social support revealed statistically significantly lower levels of depressive symptoms, higher appraisals of their disease in terms of challenge and value, and lower appraisals of their disease in terms of obstacle/loss. Women with greater social support also revealed higher levels of acceptance of life with the disease compared to those with less social support. Regression analyses showed that spiritual support was the type of support that significantly accounted for the variance in the majority of functioning indices. Some indices of functioning were also significantly accounted for by emotional and instrumental support.
Significance of the results
The process of psychological adjustment to a life-threatening disease such as breast cancer depends on multiple variables; however, social support, including spiritual support, seems to be one significant contributor to this process.
Retinoblastoma is the most common primary intraocular tumor of childhood with >95% survival rates in the US. Traditional therapy for retinoblastoma often included enucleation (removal of the eye). While much is known about the visual, physical, and cognitive ramifications of enucleation, data are lacking about survivors' perception of how this treatment impacts overall quality of life.
Methods
Qualitative analysis of an open-ended response describing how much the removal of an eye had affected retinoblastoma survivors' lives and in what ways in free text, narrative form.
Results
Four hundred and four retinoblastoma survivors who had undergone enucleation (bilateral disease = 214; 52% female; mean age = 44, SD = 11) completed the survey. Survivors reported physical problems (n = 205, 50.7%), intrapersonal problems (n = 77, 19.1%), social and relational problems (n = 98, 24.3%), and affective problems (n = 34, 8.4%) at a mean of 42 years after diagnosis. Three key themes emerged from survivors' responses; specifically, they (1) continue to report physical and intrapersonal struggles with appearance and related self-consciousness due to appearance; (2) have multiple social and relational problems, with teasing and bullying being prominent problems; and (3) reported utilization of active coping strategies, including developing more acceptance and learning compensatory skills around activities of daily living.
Significance of results
This study suggests that adult retinoblastoma survivors treated with enucleation continue to struggle with a unique set of psychosocial problems. Future interventions can be designed to teach survivors more active coping skills (e.g., for appearance-related issues, vision-related issues, and teasing/bullying) to optimize survivors' long-term quality of life.
The growing aging population and the high prevalence of several concomitant chronic diseases have contributed to the elevated rates of caregiver burden and suffering in patients. In turn, intending to relieve unnecessary pain in patients, there has been a rapid growth of outpatient palliative care programs. However, little has been studied about caregiver burden as a relevant factor potentially affecting the effectiveness of these programs. This study aimed to determine the extent of caregiver burden as a possible mediator on the effectiveness of a home-based palliative care program.
Method
Sixty-six palliative patients (56% women; mean age + SD = 71, 6 ± 17.7) and their caregivers were assessed with measures for physical, emotional, and psychological symptoms before and 1 month after the start of a home-based palliative care program.
Results
The association between caregiver burden and palliative outcomes was corroborated with a categorical regression model (p < 0.01). Caregiver burden was found to be a significant mediator in the relationship between outcome measures for palliative care at baseline and after 1 month of enrollment in the program.
Significance of results
To our knowledge, this is the first study to assess the role of caregiver burden in the effectiveness of a home-based palliative care program. Although further work is required, the results indicate that a patient-focused intervention does not have the same beneficial effect if the caregiver burden is not addressed. Future home-based palliative care programs should focus on caregivers as well as patients, with particular attention to psychosocial intervention on caregivers.
The objective of this study was to describe in the words of child-rearing parents with incurable cancer, what they had gained or thought about as a result of participating in a five-session, scripted, telephone-delivered psycho-educational parenting intervention, the Enhancing Connections Program in Palliative Care.
Methods
A total of 26 parents completed the program. Parents’ responses were audio-recorded and transcribed verbatim and verified for accuracy. The analysis proceeded through four steps: unitizing, coding into categories, defining categories, and formation of a core construct that explained parents’ attributed gains. Trustworthiness of study results was protected by coding to consensus, formal peer debriefing, and maintaining an audit trail.
Results
Although 50% reached or exceeded clinical cutoff scores on anxiety and 42% reached or exceeded clinical cutoff scores on depressed mood, parents extensively elaborated what they gained. Results revealed six categories of competencies they attributed to their participation in the program: (1) being ready for a conversation about my cancer, (2) bringing things out in the open, (3) listening better to my child, (4) getting my child to open up, (5) not getting in my child's way, and (6) changing my parenting.
Conclusions
Despite an extensive symptom burden, parents with incurable cancer attributed major gains from a brief, fully scripted, cancer parenting communication intervention. A manualized telephone-delivered educational counseling program for symptomatic parents with incurable cancer has the potential to augment competencies for parents as they assist their children manage the cancer experience.
South Asian migrants have a higher burden of life-threatening diseases and chronic diseases compared to other ethnic groups. Yet, knowledge gaps remain around their palliative care needs in the host countries. The aim of the review was to present results from a systematic literature review of available international evidence on experiences with and perspectives on palliative care among older South Asian migrants, relatives, and healthcare providers.
Methods
A systematic review in accordance with PRISMA guidelines was conducted in February 2018, searching PubMed, CINAHL, PsychINFO, and EMBASE databases. PROSPERO #CRD42018093464. Studies included empirical research, providing international evidence on experiences and perspectives on palliative care of South Asian migrants and were published between 2000 and 2018. Thematic synthesis was used to analyze data.
Results
A total of 30 articles were included: qualitative (24), quantitative (5), and mixed methods (1). Three main themes were discovered: 1) palliative care practice within the family, 2) trust as a precondition of palliative care, and 3) the importance of knowledge and cultural competency. All the themes, to a greater or lesser extent, are related to access to and use of palliative care services by South Asian migrant families.
Significance of results
Involvement of family members in palliative care decision making could improve the satisfaction of South Asian migrant families toward the service. For example, Advanced Care Planning involving family members could be a possible way to engage family members in palliative care decision making. Supportive interventions, e.g. providing knowledge, aimed at patients and their family members might improve knowledge and increase awareness among South Asian migrant families of palliative care. Knowledge gained from this review could be implemented with other ethnic minority groups.
Providing care to a loved one with cancer places demands on caregivers that result in changes to their daily routines and disruptions to their social relationships that then contribute to loneliness. Though caregivers’ psychosocial challenges have been well studied, loneliness — a determinant of health — has not been well studied in this population. This narrative review sought to describe the current evidence on loneliness among caregivers of cancer patients. We aimed to (1) define loneliness, (2) describe its prevalence, (3) describe the association between loneliness and health outcomes, (4) describe risks and consequences of loneliness among cancer caregivers, (5) identify ways to assess loneliness, and (6) recommend strategies to mitigate loneliness in this unique population.
Method
We used evidence from articles listed in PubMed, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases, book chapters, and reports. Articles were reviewed for the following inclusion criteria: (1) published in English, (2) caregivers of cancer patients, (3) loneliness as a study variable, and (4) peer-reviewed with no restriction on the timeframe of publication. Caregivers were defined as relatives, friends, or partners who provide most of the care and support for someone with cancer.
Results
Eighteen studies met inclusion criteria and were included in the analysis. Caregivers’ experiences of loneliness can contribute to negative effects on one's social, emotional, and physical well-being. Social support interventions may not be sufficient to address this problem. Existing recommendations to mitigate loneliness include cognitive and psychological reframing, one-on-one and group therapy, befriending, resilience training, and technology-based interventions.
Significance of results
Limited attention to loneliness in cancer caregivers poses a twofold problem that impacts patient and caregiver outcomes. Interventions are critically needed to address loneliness as a determinant of health in caregivers, given their pivotal role in providing care and impacting health outcomes for people with cancer.