The aim of this study was to investigate the impact of breast reconstruction time (immediate/at a later time) on women’s quality of life, self-esteem, feelings of guilt, and shame. In addition, the study aimed to investigate the association between time till reconstruction in women with later reconstruction on these parameters.

Data collection for the study was conducted from a sample of 150 women with breast cancer who had undergone reconstruction. Breast-Q, Rosenberg Self-Esteem Scale, and State Shame and Guilt Scale questionnaires were used to study the above variables.

Immediate reconstruction was associated with higher psychosocial and sexual well-being scores (p = 0.014 and 0.016, respectively). No other quality of life parameters, neither self-esteem, nor feelings of guilt, shame, and pride, were associated with having a mastectomy and reconstruction at the same time or not. Furthermore, for women who did not have immediate reconstruction, the time elapsed until reconstruction was not associated with quality of life, self-esteem, feelings of guilt, shame, and pride.

This study highlights the importance of simultaneous mastectomy and breast reconstruction, as it is associated with higher psychosocial and sexual quality of life. Therefore, simultaneous breast reconstruction is imperative to be provided by health systems.

To examine how an advance care planning (ACP) intervention based on structured conversations impacts the relationship between patients with advanced cancer and their nominated Personal Representatives (PRs).

Within the ACTION research project, a qualitative study was carried out in 4 countries (Italy, United Kingdom, the Netherlands, and Slovenia) to explore the lived experience of engagement with the ACTION Respecting Choices® ACP intervention from the perspectives of patients and their PRs. A phenomenological approach was undertaken.

Our findings show that taking part in the ACTION ACP intervention provides a communicative space for patients and their PRs to share their understanding and concerns about the illness and its consequences. In some cases, this may strengthen relationships by realigning patients’ and PRs’ understanding and expectations and affirming their mutual commitment and support.

The most significant consequence of the ACP process in our study was the deepening of mutual understanding and relationship between some patients and PRs and the enhancement of their sense of mutuality and connectedness in the present. However, being a relational intervention, ACP may raise some challenging and distressing issues. The interpersonal dynamics of the discussion require skilled and careful professional facilitation.

To explore experiences of pediatric clinicians participating in a serious illness communication program (SICP) for advance care planning (ACP), examining how the SICP supports clinicians to improve their communication and the challenges of implementing new communication tools into clinical practice.

A qualitative description study using individual interviews with a diverse group of pediatric clinicians who participated in 2.5-hour SICP training workshops at pediatric tertiary hospitals. Discussions were transcribed, coded, and arranged into overarching themes. Thematic analysis was conducted using interpretive description methodology.

Fourteen clinicians from 2 Canadian pediatric tertiary hospital settings were interviewed, including nurses (36%), physicians (36%), and social workers (29%), from the fields of neonatology (36%), palliative care (29%), oncology (21%), and other pediatric specialties (14%). Key themes included specific benefits of SICP, with subthemes of connecting with families, increased confidence in ACP discussions, providing tools to improve communication, and enhanced self-awareness and self-reflection. A second theme of perceived challenges emerged, which included subthemes of not having the conversation guide readily accessible, divergent team communication practices, and particular features of the clinical environment which limited the possibility of engaging in ACP discussions with parents.

A structured program to enhance serious illness communication supports clinicians to develop skills and tools to increase their confidence and comfort in conducting conversations about end-of-life issues. Addressing challenges of adopting the newly learned communication practices, by providing access to digital SICP tools and conducting SICP training for clinical teams may further support clinicians to engage in ACP.

To explore the acceptability of screening for family-reported outcomes (FROs) among cancer caregivers (unpaid family members or friends who provide support to patients with cancer) and identify from their perspective the key components of a FRO screening program.

Using a qualitative descriptive design, semi-structured interviews were undertaken with 23 adult caregivers of people with cancer between 2020 and 2021. Interview questions focused on acceptability of FRO screening, types of FROs, timing/frequency of screening, preferred resources following screening, and communication of FROs to patients and clinicians. Participants were recruited in Canada. Interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis and constant comparison.

Almost all caregivers welcomed FRO screening in usual care and viewed it as an avenue toward obtaining more resources. Other potential benefits of FRO screening included increased self-reflection and role acknowledgment. Caregivers prioritized screening for emotional symptoms, and most preferred that the results be shared with the patient’s treating team rather than their primary care provider. Caregivers did not want results to be shared with patients, instead favoring learning how best to discuss results with patients. Many spoke of a “one stop shop” containing all relevant information on caring for the patient (first) and for themselves (second). Opinions regarding timing and frequency of FRO screening differed. Periodic administration of FRO measures, with each one not exceeding 20 minutes, was deemed appropriate.

This study extends the concept of patient-reported outcome measures to caregivers, and findings can be used to guide the development of FRO screening programs.

Recent findings narrate profiteering detrimentally impacting hospice care quality. However, no study has examined the caregiver experience of emotional and spiritual support expressed online. The purpose was to evaluate the hospice caregiver’s experience of emotional, spiritual, and bereavement support and whether the care was respectful and compassionate to the care unit.

Retrospective mixed methods of sentiment and quantitative analysis. Sources were online caregiver reviews (n = 4,279), Consumer Assessment of Healthcare Providers and Systems (CAHPS) data on the 50 largest US hospices.

Caring and compassionate professionals were lauded in nonprofit (+.57) and for-profit settings (+.46). The nonprofit experience was in the excellent range (+42) for emotional, spiritual, and bereavement support but fell to dissatisfying (–.15) among for-profits. A respectful experience (16%) was much less commonly expressed than a compassionate one (38%). Distribution of CAHPS “Treating patient with respect” (M = 89.62, SD = 2.63) and “Emotional and spiritual support” (M = 89.80, SD = 2.04) limited inter-hospice comparisons.

Compassionate professionals were thanked and praised regardless of profit status. Sadly, anger was expressed toward large, for-profits more fixated on census than emotional, spiritual, and bereavement support; thankfully nonprofits were more supportive. CAHPS items for “Treating patient with respect” and “Emotional, spiritual support” offer limited discriminating value since low CAHPS performers always had relatively high scores on these 2, yet otherwise low scores on the remaining 6. Online reviews on the same topics provide a more substantive and realistic appraisal – distinguishing high from low performers. A higher bar than mere respect is needed for the tender experience of death, dying, and grieving. Compassion is an especially relevant addition to CAHPS since caregivers named compassionate staff as a distinguishing factor. Parity for mental health at end of life is a vital research topic. Future research should also explore the caregiver expectations set on admission.

To investigate the impact of early vs. late palliative care (PC) on the frequency of admissions to acute hospital settings and the utilization of end-of-life (EoL) interventions in cancer decedents.

In this single-center, cross-sectional study, we examined the frequency of intensive care unit (ICU) and emergency department (ED) admissions among adult cancer decedents between 2018 and 2022 in a referral hospital in México. Additionally, we assessed EoL medical interventions, categorizing patients into 3 groups: those who received early PC (EPC), late PC (LPC), and those who did not receive PC (NPC).

We analyzed data from 1762 patients, averaging 56 ± 16.3 years old, with a predominant representation of women (56.8%). PC was administered to 45.2% of patients, but EPC was limited to only 12.3%. The median time from the initiation of PC to death was 5 days (interquartile range: 2.0–31.5). Hematological malignancies were the most prevalent, affecting 21.5% of patients. EPC recipients demonstrated notable reductions in ICU and ED admissions, as well as diminished utilization of chemotherapy, radiotherapy (RT), antibiotics, blood transfusions, and surgery when compared to both LPC and NPC groups. EPC also exhibited fewer medical interventions in the last 14 days of life, except for RT.

The findings of this study indicate that a significant proportion of EoL cancer patients receive PC; however, few receive EPC, emphasizing the need to improve accessibility to these services. Moreover, the results underscore the importance of thoughtful deliberation regarding the application of EoL medical interventions in cancer patients.

Advanced cancer patients often experience existential distress (ED). However, the factors associated with ED remain unclear. This study investigated the current state of ED and identified the associated factors in Chinese patients with advanced cancer.

A cross-sectional study was conducted among 352 advanced cancer patients from 3 tertiary hospitals in Fujian, China. Participants were invited to complete the Existential Distress Scale, Number Rating Scale, Self-Perceived Burden Scale, Quality of Life Concerns in the End-of-Life Questionnaire, and Hospital Anxiety and Depression Scale.

This study aimed to investigate the level of existential distress among advanced cancer patients in China and identify the associated factors.

A total of 352 advanced cancer patients were recruited for this study. The average score for ED was 8.48 ± 7.12 among the advanced cancer patients. Multiple regression showed that the associated factors included depression (β = 0.32, p = 0.000), self-perceived burden (SPB) (β = 0.18, p = 0.001), the presence of a spouse (β = −0.10, p = 0.050), and reception of government subsidies (β = 0.17, p = 0.001). The factors accounted for 30.1% of the total variance in ED (F = 8.472, p < 0.001).

Among the advanced cancer patients queried, ED was found to be positively influenced by depression, SPB, and reception of government subsidies and negatively influenced by the presence of a spouse. Depression was the most important risk factor, and thus future ED interventions should target depression.

The existing studies among workers with a past cancer diagnosis have rarely focused on workers confronted with cancer recurrence or metastases specifically, so knowledge is lacking. The aim of this study, therefore, was to investigate the work functioning (work ability, burnout complaints, and work engagement) of workers with recurrent or metastasized cancer. Furthermore, the association of psychological capital (hope, optimism, resilience, and self-efficacy) with work functioning was studied.

Data from a survey study among workers 2–10 years past cancer diagnosis were used (N = 750); 73% reported a diagnosis of breast cancer and 27% a diagnosis of cancer other than breast cancer. Analysis of variance was used to compare participants with and without cancer recurrence or metastases regarding work functioning (work ability, burnout complaints, and work engagement) and psychological capital (hope, optimism, resilience, and self-efficacy). Multivariate regression analyses were used to analyze the association of type of cancer and psychological capital with work functioning among workers with cancer recurrence or metastatic cancer (n = 54), controlling for age.

Work ability is significantly lower among workers with cancer recurrence or metastases (controlling for age); however, burnout complaints and work engagement are at comparable levels. Among workers with cancer recurrence or metastases, a higher level of hope is positively associated with work ability and work engagement, and a higher level of hope or resilience is negatively associated with burnout complaints.

Among workers with cancer recurrence or metastases, work ability needs attention. Furthermore, especially the element hope of psychological capital is important to focus on because of the association with more favorable work functioning in general. The clinical psycho-oncological practice may benefit from these insights in guiding this vulnerable group of workers who are living with active cancer and many uncertainties.

Spirituality, emotional intelligence, and palliative care (PC) knowledge have a positive and direct influence on self-efficacy and on perception of preparation and ability to provide end-of-life (EOL) care. The aim of this work is to propose a conceptual model that relates spirituality, emotional intelligence, PC knowledge, self-efficacy, and the preparation and ability to provide EOL care by doctors and nurses.

Quantitative, exploratory, descriptive, and inferential study applied to doctors and nurses in a hospital in the north of Portugal, between May and July 2022. The data collection instrument includes a questionnaire. The relationships between latent variables were evaluated using structural equation models by the partial least squares method using the Smart PLS 3.0 software. It was obtained the previous authorization of the ethics committee.

The results (n = 380) indicate that self-efficacy, spirituality, and PC knowledge have a positive influence on the ability to provide EOL care. Emotional intelligence and spirituality have a direct and positive effect on self-efficacy. There is no direct influence of emotional intelligence on the ability to provide EOL care, but emotional intelligence has an indirect effect mediated by self-efficacy.

Spirituality, self-efficacy, and emotional intelligence are very important for the ability of doctors and nurses to provide EOL care. The identification of predictive factors of the ability to provide EOL care and the determination of the relationship between them can improve the provision of EOL care, reduction of health costs, timely and early referral of people to PC, and increase life quality.

The aims of this study are to identify the challenges faced by non-palliative care professionals (NPCPs) in caring for end-of-life patients; determine how these challenges interact with and influence each other systemically; and advance the theories and practices for supporting NPCPs in the provision of quality end-of-life care beyond the boundaries of palliative medicine.

A constructivist phenomenological research design with an Interpretive-Systemic Framework of inquiry was adopted. Thirty-five physicians, 35 nurses, and 35 Medical Social Workers who play critical roles in caring for end-of-life patients and belonging to the 9 major medical disciplines of Cardiology, Geriatric, Intensive Care Medicine, Internal Medicine, Nephrology, Neurology, Oncology, Respiratory Medicine, and Surgery were recruited through purposive snowball sampling from 3 major public hospitals.

Framework analysis revealed 5 themes and 17 subthemes that illuminate the individual, relational, cultural, institutional, and structural challenges that NPCPs faced in rendering end-of-life care. These challenges influence each other within the health-care ecosystem, serving to perpetuate or heighten care obstacles.

This is the first known study exploring the systemic challenges of NPCPs spanning 9 major medical disciplines and encompassing 3 professional stakeholders responsible for the care for end-of-life patients, thus ensuring perspective inclusivity across the health-care system. Recommendations that consider the complexity of the interactions between these systemic challenges are presented in detail.

This study aims to examine (1) the prevalence of demoralization among family caregivers of palliative care patients (PCP) in Hong Kong, (2) the percentage of caregivers who are demoralized but not depressed, (3) the factors associated with demoralization, and (4) the differences in caregivers’ support needs between high and low levels of demoralization groups.

Ninety-four family caregivers were recruited and completed a questionnaire that included measures of demoralization, depression and caregiving strain, caregivers’ support needs, and demographic information.

The prevalence of demoralization among family caregivers of PCP was found to be 12.8% (cutoff score = 50) and 51.1% (cutoff score = 30). Although 27.7% of caregivers met the criteria of depression and demoralization, 12.8% of demoralized caregivers were not depressed. Depression and caregiving strain were identified as the predictors of demoralization. Caregivers with a poorer subjective physical status and a lower education level are more prone to demoralization. The three major caregivers’ needs for support reported were (1) knowing what to expect in the future (77.7%); (2) knowing who to contact (74.5%); and (3) understanding your relative’s illness (73.4%). Those who experienced a high level of demoralization often reported more need for support in end-of-life caregiving.

This is the first study that focused on the demoralization of family caregivers of PCP in the East Asian context. Demoralization is prevalent among these caregivers. We recommend that early assessment of demoralization among family caregivers of PCP be considered, especially for those who are more depressed and have a higher level of caregiving stress.

Research on medical assistance in dying (MAiD) decision-making indicates that family members and close friends are often involved in making decisions with patients and their care providers. This decision-making model comprising patients, family members, and palliative care providers (PCPs) has been described as a triad. The objective of this study is to understand PCPs’ experiences engaging in MAiD-related decision-making triads with patients and their families in Canada.

Semi-structured qualitative interviews were analyzed using interpretive description.

We interviewed 48 specialist PCPs in Vancouver (26) and Toronto (22). Interviews were audio-recorded, professionally transcribed, and coded using a coding framework. PCPs take on 5 notable roles in their work with family members around MAiD. They provide emotional support and counseling, balance confidentiality between patients and families, provide education, coordinate support, and mediate family dynamics.

PCPs take on multiple roles in working with patients and families to make decisions about MAiD. As patients and families may require different forms of support throughout the MAiD pathway, PCPs can benefit from institutional and interprofessional resources to enhance their ability to support patients and families in decision-making and bereavement.

General palliative care (PC) is provided more at home, leading to increased involvement of relatives. Although support for relatives is a fundamental component of PC, there are deficiencies in the support provided to relatives when general PC is provided at home. This study aimed to describe the support provided by health professionals before and after a patient’s death to relatives involved in general PC at home.

A cross-sectional register study was implemented, with data from the Swedish Register of Palliative care. The sample consisted of 160 completed surveys from relatives who had been involved in general PC at home, with 160 related surveys answered by health professionals. Only the questions about support to relatives were used from the surveys.

The findings showed that although many relatives appear to receive support in general PC at home, not all relatives receive optimal support before or after a patient’s death. The findings also indicated differences in whether relatives received some support before and after a patient’s death depending on the type of relative. There were also differences in responses between health professionals and relatives regarding if relatives received counseling from a doctor about whether the patient was dying.

There is potential for improvements regarding support for relatives, especially after a patient’s death, which has been confirmed in previous studies. The differences in whether relatives received support before and after a patient’s death depending on the type of relative highlight the need for future research on how to support different types of relatives before and after a patient’s death when general PC is provided at home.

To describe levels of pain over time during disease progression in individual patients and for a total sample of patients with motor neuron disease (MND), respectively, and to examine associations between pain, disease severity, health-related quality of life (HRQOL), and depression.

A prospective cohort study was conducted on 68 patients with MND, including data collected on five occasions over a period of 2 years. Pain was assessed using the Brief Pain Inventory – Short Form. Depression was assessed using the Amyotrophic Lateral Sclerosis (ALS)-Depression-Inventory (ADI-12). Disability progression was measured using the Amyotrophic Lateral Sclerosis Functional Rating Scale – Revised Version (ALSFRS-R). HRQOL was assessed using the Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-5).

Participants reported great individual variation over time. The median level of pain was 4 (min 0 and max 10). Higher levels of pain during the last 24 h were associated with higher depression scores (ADI-12), poorer quality of life (ALSAQ-5), and lower reporting of fine and gross motor skills (ALSFRS-R). Baseline pain levels did not predict future values of depression and function. Individuals reporting average pain >3 experienced more hopelessness toward the future and reported higher depression scores compared with participants reporting average pain <3.

Great within-individual variation of pain intensity was reported. Pain intensity was associated with depression, function and HRQOL cross-sectionally, but it did not have a strong prognostic value for future depression, function, or HRQOL. Patients with MND should be offered frequent assessment of pain and depressive symptoms in person-centered care, allowing for individualization of treatment.

This study aimed to analyze the different factors that intervene in the task of caring for relatives of people with Alzheimer’s and other dementias. A first objective focused on assessing the relation between burden and anticipatory grief, considering the possibility of social support and the risk of psychopathology. A second objective aimed to examine whether caregiver burden modulates the relationships between anticipatory grief and psychopathology. A cross-sectional design was employed.

The sample consists of 129 participants who care for a family member with Alzheimer’s and other dementias. A protocol based on a battery of tests has been applied and a mediation analysis was carried out.

The results show a positive relationship between burden and anticipatory grief. Social support could have an indirect relationship with anticipatory grief, based on its effect on the level of psychopathology and caregiver burden. Finally, a modulation model reflects that the relationship between anticipatory grief and psychopathology is strong, the latter having a greater effect as a result variable than as a risk variable. However, it seems that the relationship between grief and psychopathology is better explained directly than not through the modulating effect of the caregiver burden.

The results obtained encourage us to think that an approach focused on intervening in the anticipatory grief may be an opportunity to reduce or buffer other caregiving outcomes, especially those related to the perception of caregiver burden and psychopathology.

Minimal information is available about the quality of dying and death in Uganda and Kenya, which are African leaders in palliative care. We investigated the quality of dying and death in patients with advanced cancer who had received hospice care in Uganda or Kenya.

Observational study with bereaved caregivers of decedents (Uganda: n = 202; Kenya: n = 127) with advanced cancer who had received care from participating hospices in Uganda or Kenya. Participants completed the Quality of Dying and Death questionnaire and a measure of family satisfaction with cancer care (FAMCARE).

Quality of Dying and Death Preparation and Connectedness subscales were most frequently rated as good to almost perfect for patients in both countries (45.5% to 81.9%), while Symptom Control and Transcendence subscales were most frequently rated as intermediate (42.6% to 60.4%). However, 35.4% to 67.7% of caregivers rated overall quality of dying and overall quality of death as terrible to poor. Ugandan caregivers reported lower Preparation, Connectedness, and Transcendence (p < .001). Controlling for covariates, overall quality of dying was associated with better Symptom Control in both countries (p < .001) and Transcendence in Uganda (p = .010); overall quality of death, with greater Transcendence in Uganda (p = .004); and family satisfaction with care, with better Preparation in Uganda (p = .004).

Findings indicate strengths in spiritual and social domains of the quality of dying and death in patients who received hospice care in Uganda and Kenya, but better symptom control is needed to improve this outcome in these countries.

This pilot study aimed to assess the feasibility and impact of a narrative medicine group for patients receiving palliative care.

This pilot study aimed to assess the feasibility of a six-session, physician-led narrative medicine group for patients receiving palliative care. Ten patients were recruited by their outpatient providers. Symptom severity and patient dignity scores were collected pre-intervention, at the mid-point, and post-intervention using the Patient Dignity Inventory (PDI) and Edmonton Symptom Assessment Survey (ESAS). Qualitative reports of pain, expectations, and anticipated challenges were collected before the intervention. Participant interviews were conducted after the intervention to assess overall experience in the group, challenges experienced, recommendations for future endeavors, and general feedback.

No significant changes in PDI or ESAS scores were observed at baseline, 3 weeks, and 6 weeks. Participants reported overall satisfaction, with 8 of 9 participants stating they “strongly agree” they would participate in the group again and recommend the group to others. Qualitative responses indicated benefits in the realms of relating to other patients, subjective reduction in pain, and relieving feelings of isolation.

A narrative medicine group for ambulatory patients receiving palliative care appeared to be both beneficial and feasible when delivered through a virtual format. A randomized trial with a larger sample is needed to fully assess the impacts of engaging in narrative work on symptom burden, survival, and quality of life.

Existential/spiritual questions often arise when a person suffers from a serious and/or life-threatening illness. “Existential” can be seen as a broad inclusive term for issues surrounding people’s experience and way of thinking about life. To be able to meet patients’ existential needs, knowledge is needed about what the existential dimension includes. The aim of this study was to investigate how professionals caring for people with life-threatening disease perceive the existential dimension of care.

This study is based on a mixed method design utilizing a digital survey with open- and closed-ended questions. Descriptive statistics were applied to closed-ended questions and a qualitative descriptive approach was used for the responses to the open-ended questions. Healthcare professionals at specialized palliative care units, an oncology clinic and municipal healthcare within home care and a nursing home in Sweden answered the survey.

Responses from 77 professionals expressed a broad perspective on existential questions such as thoughts about life and death. Identifying existential needs and performing existential care was considered a matter of attitude and responsiveness and thus a possible task for any professional. Existential needs centered around the opportunity to communicate, share thoughts and experiences, and be seen and heard. Existential care was connected to communication, sharing moments in the present without doing anything and was sometimes described as embedded in professionals’ ordinary care interventions. The existential dimension was considered important by the majority of respondents.

This study indicates that with the right attitude and responsiveness, all professionals can potentially contribute to existential care, and that existential care can be embedded in all care. The existential dimension of care can also be considered very important by health professionals in a country that is considered secular.

Family carers of people living with motor neurone disease (MND) face continuous changes and losses during the progression of the disease, impacting on their emotional wellbeing. Carers’ emotions might affect their engagement in everyday activities and their caring role. However, how carers manage their emotions and which strategies they identify as useful to cope with them while caring is under researched.

To identify the emotional experiences and coping strategies of MND family carers while caring the person living with MND.

We conducted 14 semi-structured interviews with family carers currently supporting people living with MND living in the UK. Interviews were audio/video recorded and professionally transcribed verbatim. We analyzed data inductively within an interpretive descriptive approach, using reflexive thematic analysis.

Three key themes were generated from the analysis. Destabilization of diagnosis reflected the devastating impact the diagnosis had on carers, characterized by initial overwhelming emotions. Adapting to new circumstances and identifying coping strategies captured how carers experienced everyday changes and losses and how they gradually adjusted to the situation by identifying coping strategies to be able to manage arising emotions. Maintaining emotional coping encompassed how carers used individual strategies they had tried before and had worked for them to cope emotionally with the continuous changes and losses while preserving their emotional wellbeing.

Our findings suggest that carers of people living with MND embark on an emotional journey from the diagnosis of the disease. As the disease progresses, carers adopt coping strategies that best work for them to manage their emotions (e.g., living day by day and seeking support). Understanding the key strategies used to support emotional coping during the caring journey and how carers re-construct their emotional life around MND could help inform future practice and research to better support carers of this population.