The impact of COVID-19 on palliative care social work: An online survey by a European Association of Palliative Care Task Force.

BACKGROUND: The SARS-Cov-2 (COVID-19) pandemic affected the delivery of health and social care services globally. However, little is known about how palliative care social work services were impacted. AIM: The aim of this study was to capture and analyse data from palliative care social workers who provided professional support in a range of settings across 21 countries during the COVID-19 pandemic. DESIGN: A cross-sectional survey-based design was used for this empirical study and this paper primarily focuses on the quantitative responses. SETTING/PARTICIPANTS: Participants, palliative care social workers, were drawn internationally via members of the EAPC Social Work Task Force and the World Hospice Palliative Care Social Work network. RESULTS: We received 362 survey responses from 21 countries. Most (79%) respondents worked with adults in in-patient units or hospitals. The number of referrals during COVID-19 increased more in non-European countries, compared to European countries. The full range of social work services could no longer be delivered, existing services changed and 65.3% of participants reported higher levels of pressure during the pandemic, which was linked to higher levels of staff absence and additional duties. For many respondents (40.8%), this included facilitating online communication between patients and their families. CONCLUSIONS: Our findings indicate that restrictions to limit the spread of COVID-19 resulted in adaptations to service delivery, increased pressure on staff and moral distress, like other health and social care professions. All members of the palliative team need support and supervision to ensure effective interdisciplinary working and team cohesion.

Thick Mucus in ALS: A Mixed-Method Study on Associated Factors and Its Impact on Quality of Life of Patients and Caregivers.

In this explorative mixed-method pilot study, we set out to have a closer look at the largely under-recognized and under-investigated symptom of thick mucus in patients with ALS and its impact on patients and relatives. Thick mucus is a highly distressing symptom for both patients and caregivers. It complicates the use of non-invasive ventilation and is therefore an important prognostic factor of survival. METHODS: In our preliminary study, we used a cross-sectional design, including ten ALS patients with thick mucus who were matched to ten ALS patients without thick mucus. Lung function tests and laboratory and sputum analysis were performed and questionnaires administered in order to determine associated factors of thick mucus accumulation. In a qualitative study using semi-structured interviews, we analysed the impact of thick mucus on patients and caregivers. RESULTS: Reduced respiratory parameters as well as a higher degree of bulbar impairment were associated with the presence of thick mucus. Quality of life of patients and caregivers was strongly impaired by thick mucus accumulation. CONCLUSIONS: Thick mucus in patients with ALS has a strong impact on quality of life. Reduced cough flow and severely impaired bulbar function appear to be indicative parameters. We suggest that healthcare providers actively explore the presence of thick mucus in their patients and that it becomes included in commonly used screening tools.

Social work in hospice and palliative care in Europe: Findings from an EAPC survey.

OBJECTIVES: Social work is considered to be a key player in Hospice and Palliative Care. To prove this claim, the Social Worker Task Force within the European Association for Palliative Care (EAPC) decided to carry out a survey. The aim of this survey was to generate basic data and thus to create a basis for further development of Palliative Care Social Work (PCSW) in Europe. METHOD: The online survey consisted of two parts: in Part 1, the 57 collective members of the EAPC were asked to fill in an online questionnaire containing questions about basic data. In Part 2, individual Palliative Care Social Workers (SWs) from all over Europe were asked to fill in another questionnaire with a focus on the basic conditions concerning their jobs as well, as on their tasks and roles. RESULTS: Thirty-two collective members of the EAPC completed the online questionnaire. SWs can be found in all of the Palliative Care settings, but there are considerable differences between the countries concerning the prevalence of SWs. Only five countries (20%) reported specialized qualification training in PCSW and just around half of the responding SWs had such a specialized training. The responding SWs (n = 360) were quite content with their working conditions. Tasks concerning patient and family and tasks concerning the interprofessional team were most prominent. There is a significant role overlap with other professions. SIGNIFICANCE OF RESULTS: The study reveals a very mixed picture of PCSW in Europe. This could be due to the high adaptability of social work, which is to be as flexible as possible to the needs of its clients. However, significant patterns, similarities, and differences emerge. The present study may, therefore, serve as a basis for further in-depth studies.

Visualizing social support in home pediatric palliative care using network maps.

BACKGROUND: Home care of children with life-limiting diseases is extremely challenging for parents/family caregivers and their social environment. In order to gain new insights into the perspective of family caregivers, we employed digital Network Maps for the first time in the field of pediatric palliative care. AIM: To examine whether the use of Network Maps helps to identify and visualize significant members of the social support system and the quality of the relationship, as well as the main areas of life that are experienced as being supportive by each individual. DESIGN: The design was an integrated mixed methods study. Creation of Network Maps was assessed in conjunction with qualitative interviews. In addition, participants gave an oral feedback on the Network Maps themselves. SETTING/PARTICIPANTS: Parents of patients supported by a Specialized Home Pediatric Palliative Care team were eligible for inclusion. Forty-five parents were enrolled in the study. RESULTS: All mothers and fathers were able to generate their individual Network Map without problems. The composition of the support systems differed greatly, even between members of the same family. Parents named on average 11 supporting actors, mainly family members and health care professionals. Some relationships were perceived as helpful and stressful at the same time. CONCLUSION: Network Maps appear to be an appropriate tool for the collection, reconstruction, and assessment of the current support situation of parents of dying children. Further studies should examine the usefulness of Network Maps for the understanding of the caregivers' support needs and for the development of psychosocial interventional strategies by pediatric palliative care teams.

Psychosocial care for the caregivers of primary malignant brain tumor patients.

Despite clinical experience that suggests a high burden of care among relatives of individuals with a primary malignant brain tumor (PMBT), little is known about their actual needs. In this study, the caregivers' personal experiences, quality of life, burden of care, and psychological well-being were examined. Fifty-nine percent did not receive any financial aid for home care, 33% had increased risk for psychosomatic problems, 45% had anxiety, and 33% increased depression levels. The caregiver's quality of life was most strongly affected by the burden of care (p < .001) and the patient's mental state (p < .03). To improve the situation, empathetic professionals and an early implementation of palliative care and social work are required.

EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)--revised report of an EFNS task force.

BACKGROUND: The evidence base for the diagnosis and management of amyotrophic lateral sclerosis (ALS) is weak. OBJECTIVES: To provide evidence-based or expert recommendations for the diagnosis and management of ALS based on a literature search and the consensus of an expert panel. METHODS: All available medical reference systems were searched, and original papers, meta-analyses, review papers, book chapters and guidelines recommendations were reviewed. The final literature search was performed in February 2011. Recommendations were reached by consensus. RECOMMENDATIONS: Patients with symptoms suggestive of ALS should be assessed as soon as possible by an experienced neurologist. Early diagnosis should be pursued, and investigations, including neurophysiology, performed with a high priority. The patient should be informed of the diagnosis by a consultant with a good knowledge of the patient and the disease. Following diagnosis, the patient and relatives/carers should receive regular support from a multidisciplinary care team. Medication with riluzole should be initiated as early as possible. Control of symptoms such as sialorrhoea, thick mucus, emotional lability, cramps, spasticity and pain should be attempted. Percutaneous endoscopic gastrostomy feeding improves nutrition and quality of life, and gastrostomy tubes should be placed before respiratory insufficiency develops. Non-invasive positive-pressure ventilation also improves survival and quality of life. Maintaining the patient's ability to communicate is essential. During the entire course of the disease, every effort should be made to maintain patient autonomy. Advance directives for palliative end-of-life care should be discussed early with the patient and carers, respecting the patient's social and cultural background.

Meaning in life in patients with amyotrophic lateral sclerosis.

The construct 'meaning in life' (MiL) has become increasingly important in palliative care. Several meaning-focused interventions have been developed recently. The aim of this study was to investigate MiL in patients with amyotrophic lateral sclerosis (ALS) and compare the findings with a representative sample of the German population. In the newly developed 'Schedule for Meaning in Life Evaluation' (SMiLE), respondents first list individual areas that provide meaning to their life before rating their current level of importance and satisfaction with each area. Overall indices of weighting (IoW, range 20-100), satisfaction (IoS, range 0-100), and weighted satisfaction (IoWS, range 0-100) are calculated. Results of our study showed that 46 ALS patients completed the SMiLE: the IoS was 74.7 ± 20.2, the IoW 88.1 ± 10.1, and the IoWS 76.3 ± 20.5. Satisfaction with MiL was negatively associated with disease duration and degree of functional impairment. After adjustment for age, sex, and marital status, the representative sample (n = 977) scored significantly higher in the IoS (82.8 ± 14.7) and the IoWS (83.3 ± 14.8). Compared to the general population, ALS patients list more meaning-relevant areas, are more likely to list partner, and less likely to list health. Thus, response shift seems to be a central coping mechanism in ALS patients. Regarding their major MiL areas, they shift their focus away from decreasing health status and towards supportive relationships.

Personal values and individual quality of life in palliative care patients.

To evaluate the relationship between personal values and individual quality of life (iQoL) in palliative care patients, 75 patients with advanced cancer or amyotrophic lateral sclerosis (ALS) were asked to complete a self-report questionnaire concerning personal values and a semi-structured interview on their iQoL. Sixty-four patients took part in the study (56% cancer, 44% ALS). The most important personal values were benevolence, self-direction, and universalism, whereas power, achievement, and stimulation were the least important. Self-transcendence values were higher than self-enhancement values in all patients. Compared with healthy adults, palliative care patients scored significantly higher in benevolence and lower in self-enhancement values. Conservation values (security, conformity, tradition) were correlated with higher levels of iQoL (P=0.03). There were no significant differences between ALS and cancer patients. These data suggest that conservation values protect the patients' iQoL in the palliative care situation. The observed shift towards self-transcendence values may be related to coping processes of terminally ill patients. The relationship between self-transcendence values and iQoL should be further investigated.

Effects of spiritual care training for palliative care professionals.

Little is known about the effects of spiritual care training for professionals in palliative medicine. We therefore investigated prospectively the effects of such training over a six-month period. All 63 participants of the three and a half-day training were asked to fill out three questionnaires: before and after the training, as well as six months later. The questionnaires included demographic data, numeric rating scales about general attitudes towards the work in palliative care, the Self-Transcendence Scale (STS), the spiritual subscale of the Functional Assessment of Chronic Illness Therapy (FACIT-Sp) and the Idler Index of Religiosity (IIR). Forty-eight participants (76%) completed all three questionnaires (91% women, median age 49 years; 51% nurses, 16% hospice volunteers, 14% physicians). Significant and sustained improvements were found in self-perceived compassion for the dying (after the training: P=0.002; 6 months later: P=0.025), compassion for oneself (P <0.001; P =0.013), attitude towards one's family (P =0.001; P =0.031), satisfaction with work (P < 0.001; P = 0.039), reduction in work-related stress (P < 0.001; P = 0.033), and attitude towards colleagues (P = 0.039; P = 0.040), as well as in the FACIT-Sp (P < 0.001; P = 0.040). Our results suggest that the spiritual care training had a positive influence on the spiritual well-being and the attitudes of the participating palliative care professionals which was preserved over a six-month period.

Individual quality of life is not correlated with health-related quality of life or physical function in patients with amyotrophic lateral sclerosis.

We compared the change over time of individual quality of life (QOL) versus health-related QOL (HRQOL) and functional status in palliative care patients with amyotrophic lateral sclerosis (ALS). Forty-two patients with ALS performed the following assessments: the ALS functional rating scale (ALSFRS), the Sickness Impact Profile (SIP), the Short Form 36 (SF-36), and the Schedule for the Evaluation of Individual QOL-Direct Weighting (SEIQOL-DW). The SF-36 and the SEIQOL-DW were assigned at random. Patients were examined at least three times at 2-month intervals. There was a significant decrease from visit 1 to 3 (4-month period) in the function-based values of the SIP, SF-36, and ALSFRS. Despite this progressive decline of physical function and HRQOL, individual QOL as assessed by the SEIQOL-DW remained stable throughout the observation period. Correspondingly, there was a clear correlation between the ALSFRS, the SIP, and the SF-36, but no correlation between these scales and the SEIQOL-DW. The QOL domains most often named in the SEIQOL-DW were family, friends/social life, health, and profession. Thus, individual QOL appears to be largely independent from physical function in severely ill patients with ALS. Because of the characteristics of the scale, assessment of individual QOL may have an interventional value in palliative care.

Sexuality in patients with amyotrophic lateral sclerosis and their partners.

Sexuality in patients with amyotrophic lateral sclerosis (ALS) has received little attention so far. Although sexual function is not directly affected by the disease process, several patients have reported problems within their sexual relationship. We performed a questionnaire survey to ascertain the extent and clinical relevance of sexual problems experienced by patients with ALS and their partners. Of 91 patients and partners asked, 62 agreed to participate in the study. Compared with the time before disease onset, sexual interest had decreased from 72% to 44% for patients and from 78% to 44% for partners. Sexual activity had moderately decreased from 94% to 76% for the patients and from 100% to 79% for the partners. Before the disease, 19% of the patients and 20% of the partners reported sexual problems. This increased to 62% of the patients and 75% of the partners at time of survey. The problems reported were mainly decreased libido, passivity of the partner and own passivity. The most frequent reasons for these problems were the physical weakness and the body image changes due to ALS. The data show that sexuality is an important and problematic issue for a large proportion of ALS patients and their partners. This topic is rarely discussed in the medical setting. Counselling and information should be made available in order to better address this important aspect of quality of life.

Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers.

Non-invasive ventilation (NIV) is an efficient palliative measure for symptoms of chronic hypoventilation in patients with amyotrophic lateral sclerosis (ALS), and can also lengthen survival. A subset of ALS patients undergoes tracheostomy ventilation (TV) for life prolongation. We investigated the quality of life (QOL) and psychosocial situation of 52 home ventilated ALS patients and their caregivers. The battery included sociodemographic, generic, and disease-specific variables, as well as the Profile of Mood States and the Munich Quality of Life Dimensions List. Data were compared between the NIV (n=32) and the TV (n=21) groups. Mean ventilation time was 14 months for NIV and 35 months for TV. Eighty-one percent of TV patients had been tracheotomized without informed consent. The data show a good overall QOL for both NIV and TV patients, but a very high burden of care for TV caregivers, 30% of whom rated their own QOL lower than their patient's QOL. Sexuality was an important issue. Thus, any assessment of QOL in a home palliative care situation should include the primary caregivers.