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This study aims to measure and explore the barriers to translating theoretical knowledge of palliative care into clinical practice.
Methods
A mixed-method study, combining a cross-sectional survey and key interviews was conducted. The quantitative data were obtained from 173 nurses and the key interviews were conducted with 42 health professionals drawn from multiple settings. For quantitative data analysis, Statistical Package for the Social Sciences software were conducted, and a thematic analysis supported with NVivo software were used for analyzing qualitative data.
Results
Of the 220 nurses invited, 173 completed the survey (79%). Most (78%) had a bachelor’s degree in nursing. Fewer than half, 69 (40%) scored 75% or more for the knowledge test; 173 (100%) scored 50% or greater for attitude; and only 32 (18.5%) scored 75% or greater for self-reported practice. While there was a small, positive correlation between palliative care attitudes and self-reported practice (r = 0.22, p = 0.003), the qualitative findings indicated that nurses had significant challenges in translating their theoretical knowledge into clinical practice. Limited clinical practice was linked to inadequate knowledge resulting from insufficient integration of palliative care content in undergraduate curricula and a lack of follow-up training. This was further exacerbated by shortages of medicine, staff, and financial resources and was linked to limited attention accorded to palliative care by the government.
Significance of results
While the results showed the majority held positive views toward palliative care, improving palliative care practices requires, and enhancing nurses’ knowledge of palliative care. This requires changing teaching methods and engaging policymakers.
Advance care planning (ACP) conversations require the consideration of deeply held personal values and beliefs and the discussion of uncertainty, fears, and hopes related to current and future personal healthcare. However, empirical data are limited on how such spiritual concerns and needs are supported during ACP. This study explored board-certified healthcare chaplains’ perspectives of patients’ spiritual needs and support in ACP conversations.
Methods
An online survey of 563 board-certified chaplains was conducted from March to July 2020. The survey included 3 open-ended questions about patients’ hopes and fears and about how the chaplains addressed them during ACP conversations. Written qualitative responses provided by 244 of the chaplains were examined with content analysis.
Results
The majority of the 244 chaplains were White (83.6%), female (59%), Protestant (63.1%), and designated to one or more special care units (89.8%). Major themes on patients’ hopes and fears expressed during ACP were (1) spiritual, religious, and existential questions; (2) suffering, peace, and comfort; (3) focus on the present; (4) hopes and fears for family; and (5) doubt and distrust. Major themes on how chaplains addressed them were (1) active listening to explore and normalize fears, worries, and doubts; (2) conversations to integrate faith, values, and preferences into ACP; and (3) education, empowerment, and advocacy.
Significance of results
ACP conversations require deep listening and engagement to address patients’ spiritual needs and concerns – an essential dimension of engaging in whole-person care – and should be delivered with an interdisciplinary approach to fulfill the intended purpose of ACP.
The investigators conducted a psychosocial needs assessment of mesothelioma patients through self-report measures of quality of life (QOL), coping, depression, and social support.
Methods
Patients with malignant pleural mesothelioma (MPM) (N = 67) completed a battery of assessments at a single timepoint after being approached during routine medical oncology clinic appointments or by letter.
Results
Participants were predominately male (70.0%; n = 47) and ranged in age from 35 to 83 years old (M = 65.61, SD = 9.71). Most participants were white (88.0%; n = 59), and 10.0% (n = 7) were identified as Hispanic. The majority were married or living with a partner (93.0%; n = 62) and had some college or more education (64.0%; n = 43). Fourteen percent of participants (n = 11) endorsed significantly elevated depression symptoms. No significant demographic or clinical differences in depressed compared to nondepressed participants were observed, with a trend toward those identifying as Hispanic and those who were divorced as being more likely to be depressed. For the total sample, the most frequently endorsed coping strategies were active coping, emotional support, and acceptance.
Significance of results
The present study did not identify any clear correlates of depression or QOL among patients with MPM. This research contributes to the small literature on psychosocial functioning in patients with MPM and provides putative directions for future larger studies and the development of interventions to provide appropriate support to diverse patients with MPM.
While there is a growing body of literature on the wish to die in older patients, there is little research about their will to live. Exploring the subjective will to live (WTL) offers valuable insights into the patients’ resources and motivations, which could help improving geriatric palliative care. The aim of this study was to examine, in long-term care facilities (LTCF), residents’ definitions of and factors influencing their WTL.
Methods
Twenty residents (mean age 85.8 ± 10.3 years, 70% women) of 3 Swiss LTCFs gave informed consent and participated in semi-structured interviews about their WTL. Interviews were audio-recorded and transcribed verbatim. Thematic analysis was conducted to identify recurrent themes (40% double coded).
Results
The majority of residents reported that they had not thought about the WTL. Nevertheless, they had no difficulty in describing it as innate in their lives. They spontaneously mentioned factors that contributed to their WTL, classified into 5 themes: (1) relationships – primarily with family and health professionals, secondarily with other residents; (2) living situation – the LTCF as a necessary place providing care, constant professional presence, and security, yet necessitates inconveniences such as loss of independence; (3) personality factors – positive outlook on life or spirituality; (4) engagement in routines – organized activities and individual daily routines; and (5) health status – primarily related to functional health.
Significance of results
Examining WTL provides important insights into elements that are essential to take into account in planning care and promoting well-being in LTCF residents. The themes identified provide important starting points for improving life in LTCFs.
Despite the potential benefits of open communication about possible desires to die for patients receiving palliative care, health professionals tend to avoid such conversations and often interpret desires to die as requests for medical aid in dying. After implementing trainings to foster an open, proactive approach toward desire to die, we requested trained health professionals to lead and document desire to die-conversations with their patients. In this article, we explore how trained health professionals experience an open (proactive) approach to desire to die-conversations with their patients.
Methods
Between April 2018 and March 2020, health professionals recorded their conversation-experiences on documentation sheets by answering seven open questions. A subsample was invited to offer deeper insights through semi-structured qualitative interviews. Interviews and documentation sheets were transcribed verbatim and analyzed thematically, then findings from both sources were compared and synthesized.
Results
Overall, N = 29 trained health professionals documented N = 81 open desire to die-conversations. A subsample of n = 13 health professionals participated in qualitative interviews. Desire to die-conversations after the training were reported as a complex but overall enriching experience, illustrated in seven themes: (1) beneficial (e.g., establishing good rapport) and (2) hindering aspects (e.g., patients’ emotional barriers) of desire to die-conversations, (3) follow-up measures, (4) ways of addressing desire to die, as well as (5) patient reactions to it. The interviews offered space for health professionals to talk about (6) content of desire to die-conversation and (7) (self-)reflection (e.g., on patients’ biographies or own performance).
Significance of results
As part of an open (proactive) approach, desire to die-conversations hold potential for health professionals’ (self-)reflection and a deeper understanding of patient background and needs. They may lead to a strengthened health professional–patient relationship and potentially prevent suicide.
Cancer is a life-changing experience, and side effects from treatment can make it difficult for survivors to return to their pre-cancer “normal life.” We explored the “new normal” and barriers to achieving it among lung cancer survivors who underwent surgery.
Methods
Semi-structured interviews were conducted with 32 recurrence-free non–small cell lung cancer survivors. We asked survivors how life had changed; how they defined the “new normal”; barriers that prevent them from achieving a “normal” life; and unmet needs or support for normalcy. Thematic analysis was performed.
Results
Defining “new normal” subjectively depends on an individual’s expectation of recovery: (1) being able to do what they want without pain or discomfort; (2) being able to do activities they could accomplish before their surgery; and (3) being able to work, earn money, and support their family. We found that (1) persistent symptoms, (2) fear of cancer recurrence, (3) high expectations in recovery, and (4) psychosocial stress and guilty feelings were barriers to achieving a “new normal.” The needs and support for normalcy were information on expected trajectories, postoperative management, and support from family and society.
Significance of results
Survivors defined the “new normal” differently, depending on their expectations for recovery. Informing survivors about the “new normal” so they could expect possible changes and set realistic goals for their life after cancer. Health professionals need to communicate with survivors about expectations for “normality” from the beginning of treatment, and it should be included in comprehensive survivorship care.
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.
Methods
A 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.
Results
Factors 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 results
The 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.
End-of-life (EoL) processes are a complex socio-normative and ethical phenomenon. This study aimed to generate a database of public opinion in Israel concerning EoL processes and decisions and to identify differences in attitudes across subgroups in the population, particularly based on experience as a family caregiver of a dying patient.
Methods
This cross-sectional study was performed in late March 2022. The study utilized an online sample of 605 adults over the age of 50 including those who accompanied a loved one to their death in the last 3 years. Participants were requested to provide their opinions and attitudes on several aspects of EoL decisions, including truth-telling, medically assisted dying, EoL procedures, pre-death actions, and family caregivers’ engagement.
Results
While only 27% and ∼30% of participants support artificial respiration or feeding (respectively) of terminally ill patients, 66% support analgesic treatment, even at the risk of shortening life. The data show an association between religiosity and agreement with life-extending procedures. For example, while 83% of seculars support medically assisted dying, only 59% and 26% of traditional and religious respondents support it. However, no statistically significant differences were observed in support of family involvement in EoL process in any sociodemographic variable.
Significance of results
The results of this study suggest that the Israeli public is relatively polarized on several issues about EoL processes, specifically patient autonomy and medically assisted dying. Yet, at the same time, there is a consensus among the Israeli public about certain EoL elements, particularly the importance of family caregivers in the EoL decision-making process.
The early introduction of palliative care can have a positive impact on the quality of life of patients suffering from life-limiting diseases. However, the palliative care needs of older, frail, housebound patients are still mostly unknown, as is the impact of frailty on the importance of these needs.
Objectives
To identify the palliative care needs of frail, older, housebound patients in the community.
Methods
We conducted a cross-sectional observational study. This study took place in a single primary care center and included patients who were ≥65 years old, housebound, followed by the Geriatric Community Unit of the Geneva University Hospitals.
Results
Seventy-one patients completed the study. Most patients were female (56.9%), and mean age (SD) was 81.1 (±7.9). The Edmonton Symptom Assessment Scale mean (SD) score was higher in frail patients as opposed to vulnerable patients for tiredness (p = 0.016), drowsiness (p = 0.0196), loss of appetite (p = 0.0124), and impaired feeling of well-being (p = 0.0132). There was no difference in spiritual well-being, measured by the spiritual scale subgroup of the Functional Assessment of the Chronic Illness Therapy–Spiritual Well-Being scale (FACIT-sp) between frail and vulnerable participants, although scores in both groups were low. Caregivers were mainly spouses (45%) and daughters (27.5%) with a mean (SD) age of 70.7 (±13.6). The overall carer–burden measured by the Mini-Zarit was low.
Significance of results
Older, frail, housebound patients have specific needs that differ from non-frail patients and should guide future palliative care provision. How and when palliative care should be provided to this population remains to be determined.
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.
Methods
The 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.
Results
Content 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 results
Systematic 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.
Some cancer patients experience cancer-related cognitive change (CRCC). Cognitive rehabilitation interventions (CRIs) have recently been developed to help mitigate the impact of CRCC, which, untreated, can impact resumption of daily life post-cancer treatment. The experience of participants is important to understand but largely absent within research literature. This study aimed to explore how those with CRCC experience the phenomenon following completion of a CRI.
Methods
This study comprised a qualitative phenomenological approach. This involved conducting in-depth, semi-structured interviews with 6 self-referred participants from one CRI. Participants were invited to discuss their experience of CRCC and what the CRI therefore meant to them. Interviews were analyzed using interpretative phenomenological analysis.
Results
Analysis of the findings revealed 4 key themes. (1) “Experiencing and addressing isolation” comprises reflections on posttreatment perceived abandonment and consequent feelings of belonging through CRI participation. (2) “Identity” explores participants’ reflections around perceived loss-of-self and feelings of empowerment from the intervention. (3) “Cognitive and physical balance” comprises the planning and choices participants make, supported by both their own and CRI coping strategies as they seek acceptance of cognitive change. (4) “Course reflections” explore reflections on intervention structure, format, and delivery, focusing on 2 subthemes of accessibility, flexibility and inclusivity, and communication. All participants reflected positively on their experience.
Significance of results
Results support further dissemination among health professionals and implementation of this CRI to better support self-reported CRCC concerns within this population. Future qualitative research should explore the long-term impact of CRI interventions.
To examine the thematic features of dignity therapy generativity documents of advanced cancer patients receiving chemotherapy in mainland China from the perspective of meaning-making during dignity therapy.
Methods
This is a qualitative descriptive study. Content analysis was used to analyze 24 dignity therapy generativity documents derived from a quasi-experimental trial of dignity therapy for advanced cancer patients receiving chemotherapy in a daycare center at a cancer hospital in northern China.
Results
Among the 24 advanced cancer patients whose generativity documents were analyzed, 14 were male and ranged in age from 26 to 78 years (average = 50.3). Two dimensions emerged from the data: (1) the sources of meaning in life, which consisted of social relationships, things and circumstances providing meaning in life, and (2) the ultimate meaning in life, referring to finding one’s real self and realizing the purpose in life, including personal life goals, dignity and autonomy, and morality of patients.
Significance of results
The multidimensional constructs of meaning in life with distinctive traditional Chinese cultural characteristics could provide insights into dignity-conserving care for advanced cancer patients with Chinese culture and provide evidence for refining the implementation protocol of DT through intentionally addressing the ultimate meaning of patients in the therapeutic session.
The absence of a specific tool to evaluate the impact of supportive care in general and socioesthetics (SE) in particular is undoubtedly at the origin of the lack of published research based on scientific standards.
Objective
We developed a supportive-care, patient-reported outcome questionnaire using the multistep methods, following COSMIN recommendations.
Methods
The Patient Centricity Questionnaire (PCQ) was developed using the standardized methodology for designing patient-reported outcome (PRO) questionnaires according to the following steps: elaboration of the questionnaire, measurement properties of the questionnaire, internal and external validation, test–retest validation and translation, cross-cultural adaptation, and cognitive debriefing. A multidisciplinary work group was designed including professionals, such as physicians, public health experts, sociologists, supportive-care experts, and socioestheticians.
Results
Our questionnaire includes 11 items. It is scored by adding each Visual Analogue Scale [VAS], making it range from 0 to 110, with a higher benefit when the score is higher. The Cronbach's α coefficient is 0.88 for the entire questionnaire. As the questionnaire is a reflection of the patient's feelings, it is quite natural that the name “Patient Centricity Questionnaire” (PCQ) was retained and validated by the Scientific Committee. The PCQ correlated negatively and moderately with the Perceived Stress Scale [PSS], positively and moderately with the mental dimension of the Short Form-12, and poorly with the Well Beng 12 [WB12], the physical dimension of the SF-12, and the satisfaction VAS.
Conclusion
Constructed according to the recommendations, the PCQ meets the prerequisite for this type of questionnaire. Its short format and simplicity of use allow it to be used by a large number of people. The PCQ is a simple, reliable, easy-to-use, and validated tool for research teams, making it possible for randomized studies to prove the impact of supportive care in general and SE in particular, on the patient's quality of life.
Pediatric healthcare professionals (HCPs) working in a palliative setting may experience challenges during their clinical practice in addressing the complex end-of-life phase of children and their families. Nurses, especially, have a frontline role in providing assistance, thereby becoming at risk of physical and psychological burden. Pediatric psychologists have an ethical responsibility to help colleagues by proposing self-care interventions that will improve their well-being and, indirectly, the work climate. This study investigated the impact of a complementary therapy, delivered by a pediatric psychologist and a nurse, on physical and psychological variables among nurses at the Paediatric Hospice of the Regina Margherita Children’s Hospital in Italy.
Methods
Thirty-five nurses participated in 5 weeks of Reiki sessions for an overall total of 175 sessions. The effect of the sessions was analyzed through a paired t-test analysis comparing the values of heart rate, oxygen saturation, and systolic and diastolic pressure collected before and after each session. The same test was conducted comparing the values of the 3 burnout subscales for each of the 35 nurses collected before the beginning of the first session with those collected at the end of the last session 2 months later.
Results
Results underlined a positive short-term effect with a significant decrease in heart rate before and after each session (t = 11.5, p < .001) and in systolic pressure (t = 2, p < .05). In addition, a decrease in emotional exhaustion symptoms was found (t = 2.3, p < .05) at the end of the intervention.
Significance of results
Reiki could be a valid strategy to complement traditional pediatric psychology clinical practice designed to protect HCPs from emotional and physical demands and to create a more supportive workplace for staff and patients alike.
Assessment of the psychometric characteristics of the Greek version of the brief World Health Organization Quality of Life Instrument (WHOQOL-BREF) in patients with advanced cancer and pain, and exploration of the association between psychological distress and quality of life (QoL).
Method
The sample consisted of 145 patients with advanced cancer and pain who completed the WHOQOL-BREF, the Symptom Checklist-90 (SCL-90), and the Pain Visual Analogue Scale (VAS). In analysis, the following methods were used: Cronbach's alpha, Item Response Theory (IRT), polychoric, Pearson and polyserial correlation, t-test, and Linear regression.
Results
The internal consistency was high for all domains of the WHOQOL-BREF (Cronbach's α ≥ 0.731). Similarly, with the exception of three items, the WHOQOL-BREF items has large discrimination parameters suggesting that they have a high ability in differentiating subjects. On SCL-90, the three dimensions with the highest scores were Depression, Somatization, and Anxiety. The overall score for psychological distress, the Global Severity Index (GSI), showed significant negative association with all the WHOQOL-BREF factor scores (Physical Health: B = −1.488, p < 0.001, Psychological Health: B = −1.688, p < 0.001, Social Relationships: B = −0.910, p < 0.001, Environment: B = −1.064, p < 0.001). Male gender was associated with lower scores for Social Relationships (B = −0.358, p = 0.007) and Environment (B = −0.293, p = 0.026).
Significance of results
The Greek version of the WHOQOL-BREF showed good psychometric properties in patients with advanced cancer and can be used as a reliable instrument in clinical practice. The level of psychological distress can be considered a determinant of QoL in patients with advanced cancer and pain, independently of pain intensity or other clinical characteristics. In cancer, the disease process can activate multiple physiological and psychological mechanisms that lead to a wide range of symptoms of psychological distress. To improve their QoL, psychological intervention focused on the identification and alleviation of psychological distress in patients with advanced cancer, and help in finding meaning in their experience, should be provided.
Older adults with severe dementia experience multiple symptoms at the end of life. This study aimed to delineate distinct symptom profiles of older adults with severe dementia and to assess their association with older adults’ and caregiver characteristics and 1-year mortality among older adults.
Methods
We used baseline data from a cohort of 215 primary informal caregivers of older adults with severe dementia in Singapore. We identified 10 indicators representing physical, emotional, and functional symptoms, and responsive behaviors, and conducted latent class analysis. We assessed the association between delineated older adults’ symptom profiles and their use of potentially burdensome health-care interventions in the past 4 months; older adults’ 1-year mortality; and caregiver outcomes.
Results
We delineated 3 profiles of older adults – primarily responsive behaviors (Class 1; 33%); physical and emotional symptoms with responsive behaviors (Class 2; 20%); and high functional deficits with loss of speech and eye contact (Class 3; 47%). Classes 2 and 3 older adults were more likely to have received a potentially burdensome intervention for symptoms in the past 4 months and have a greater hazard for 1-year mortality. Compared to Class 1, caregivers of Class 2 older adults were more likely to experience adverse caregiver outcomes, that is, higher distress, impact on schedule and health, anticipatory grief, and coping and lower satisfaction with care received (p<0.01 for all).
Significance of results
The 3 delineated profiles of older adults can be used to plan or optimize care plans to effectively manage symptoms of older adults and improve their caregivers’ outcomes.
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.
Methods
Participants (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.
Results
Analysis 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 results
Many 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.
The study aimed to explore the determinants of quality of life (QoL) among Omani family caregivers (FCGs) of adult patients with cancer pain.
Methods
A descriptive cross-sectional design, measures of caregiver reaction, knowledge about cancer pain, self-efficacy for cancer pain and other symptom management, QoL, and patient functional status were used to collect data from 165 FCGs and patients. Descriptive, correlation, and regression analyses were performed.
Results
Most patients had intermittent (83%) and severe (50.9%) cancer pain. The FCGs had low QoL (58.44 ± 17.95), and this mostly impacted support and positive adaptation (55.2%). Low QoL was associated with low self-rated health, low confidence in the ability to control the patient’s pain, low self-efficacy, high perceived distress due to patient pain, and a high impact of caregiving on physical health. The level of caregiver distress due to the patient’s pain (p < 0.01), patient’s functional status (p < 0.01), and perceived impact of caregiving on health (p < 0.05) were significant predictors of overall QoL.
Conclusion
Omani FCGs of patients with cancer pain suffer a negative impact on their QoL, and this is related to the patient’s level of pain and functional status, caregiver’s health, and self-efficacy in cancer pain and symptom management. The FCGs’ QoL may be enhanced by augmenting their skills and self-efficacy in cancer pain and symptom management and by health promotion programs.
Advancements in medicine and science have enabled more and more people to live longer with a chronic medical condition, namely cancer. Nevertheless, the palliative care (PC) approach continues to be introduced and incorporated later in the lives of patients and families dealing with such conditions. Thus, the need for individuals to care for this population in our society is increasing, giving rise to the so-called “informal caregivers.” The present study intends to examine the main obstacles faced by informal caregivers taking care of a cancer patient receiving PC based on what health professionals working in these settings perceive and write down. To achieve this goal, the written files of 2 Portuguese palliative care institutions were analyzed.
Methods
An inductive thematic analysis was conducted, focusing on the contact between health professionals and family caregivers and based on the notes taken by health professionals.
Results
Three main overarching themes were identified: (1) burden, (2) intra-family impact of the illness, and (3) network vulnerabilities. Included in this are the emphasis on the role of the family and social support, the high levels of psychological morbidity and caregiver burden present over this period, and a great need for information about the illness.
Significance of results
This study provided a broader awareness regarding the daily struggle experienced by family caregivers, particularly those who juggle between “roles.” It is vital to understand the scope of the obstacles experienced by caregivers during the terminal phase of their loved one’s illness, given how important it is to address the family’s needs. Future studies and practitioners should consider these observations and topics when considering new approaches for this population, as they ought to be quite focused and short in time in order to meet people’s needs.
Physical activity (PA) interventions help people with advanced incurable diseases to manage symptoms and improve their quality of life. However, little is known about the extent to which PA is currently delivered in hospice care in England.
Objectives
To determine the extent of and intervention features of PA service provision in hospice care in England alongside barriers and facilitators to their delivery.
Methods
An embedded mixed-methods design using (1) a nationwide online survey of 70 adult hospices in England and (2) focus groups and individual interviews with health professionals from 18 hospices. Analysis of the data involved applying descriptive statistics to the numeric items and thematic analysis to the open-ended questions. Quantitative and qualitative data were collected and analyzed separately.
Results
The majority of responding hospices (n = 47/70, 67%) promoted PA in routine care. Sessions were most often delivered by a physiotherapist (n = 40/47, 85%) using a personalized approach (n = 41/47, 87%) and included resistance/thera bands, Tai Chi/Chi Qong, circuit exercises, and yoga. The following qualitative findings were revealed: (1) variation among hospices in their capacity to deliver PA, (2) a desire to embed a hospice culture of PA, and (3) a need for an organizational commitment to PA service provision.
Significance of results
While many hospices in England deliver PA, there is considerable variation in its delivery across sites. Funding and policy action may be needed to support hospices to initiate or scale up services and address inequity in access to high-quality interventions.