Carers of people who are involuntarily admitted to hospital report feeling isolated and unsupported by services. The Independent Review of the Mental Health Act (MHA) recommended that carers be supported. However, no research has directly explored what type of support carers would find most helpful when a relative/friend is involuntary admitted.

To explore carers’ experiences and views around the support they want to receive when their relative/friend is involuntarily admitted under the MHA.

A total of 22 one-to-one interviews with carers were conducted online at three sites across England. Audio recordings of the interviews were transcribed, and data were analysed with thematic analysis.

Four main themes were identified: (a) heterogeneity in the current support for carers, (b) information about mental health and mental health services, (c) continuous support, and (d) peer support and guidance. Carers reported receiving support from professionals, peers and relatives, but this was unstructured, and the extent of support varied across carers. Carers reported wanting more information about mental health services, and for this information to be consistent. Carers also reported wanting emotional support from a single, continuous person, helping them establish a more personal and sincere connection. Peers were also identified as important in the provision of carer support, allowing carers to feel reassured and understood in their experience.

The support received by carers is currently unstructured. To meet the MHA review recommendations, carers of patients who are involuntarily admitted should be allocated a named contact person, ideally with lived experience, to offer information and personal continuity of support.

Dignity therapy (DT) is well-established in adults, and it might potentially benefit the younger population. This study aims to develop a pediatric family-based dignity therapy (P-FBDT) protocol for terminally ill children and their families.

A parallel mixed-methods design was used. The P-FBDT protocol was developed based on the adult DT, and meanwhile by taking children-specific dignity characteristics and Chinese family-oriented culture into consideration. The protocol was then evaluated and modified based on the quantitative and qualitative feedback from 2-round surveys of 14 pediatric oncology or pediatric palliative care experts.

The P-FBDT involves terminally ill children and their families in meaningful interactions including a series of conversations and creative activities, which will be recorded and then edited into a document-based generativity entity. The P-FBDT protocol was recognized as highly reasonable and the P-FBDT interview guide was endorsed as important, acceptable, clear, comprehensive, and suitable to be used in pediatric palliative care practice in Chinese culture (>90%). Potential benefits, possible challenges, and practical considerations of the P-FBDT were also proposed.

The P-FBDT was perceived to be potentially beneficial to terminally ill children and their families by engaging in a series of meaningful family interactions and creating a lasting memento to be preserved. The protocol needs to be pilot tested among terminally ill children and families for feasibility and potential efficacy in practice.

Family members caregivers (FMCs) of patients with severe psychiatric disorders (SMPD) are subjected to a complex system of fatigue and stress. FMCs can be subjected to a care burden defined as “Family Burnout”. Caring of family members of patients affected by psychiatric disorder suffered an additional burden during the pandemic period.

To investigate the stress, burnout and compassion fatigue in FMCs during the pandemic vs non-pandemic period.

In our observational study we recruited family members (FMCs) of SMPDs (DSM-5). The severity was assessed with BPRS > 31; from March 2021 to July 2021 (T1), in 66 FMCs (38 females, 28 men) that completed following questionnaires: CBI (Caregiver Burden Inventory), ProQOL (compassion satisfaction and compassion fatigue (burnout and secondary trauma) subscales]. These data (T1) were compared with the scores obtained in the same family members in 2019 (T0) in a pre-pandemic period.

ProQOL data /T1) have a higher total score than those observed in a previous study (T0). They show a lower main score in Compassion Satisfaction (CS) subscale [T1 vs T0; 34.27 vs 38.89 (p < .00.5). CS subscale T0 vs T1= 34.84% vs 12.12%). High levels of burnout were found in 28.79% (T1) vs 13.64% (T0) of FMCs group. Similar results showed in the Secondary Trauma subscale and CBI with higher scores in T1 vs T0.

The comparative mean results (2019 vs 2021) showed that in the same group of FMCs, the mean values obtained with same scales were higher during the lockdown. During health crisis, FMCs of psychiatric patients are subjected to high levels of stress.

No significant relationships.

Investigating family members’ causal beliefs regarding schizophrenia is an important step in the management of the illness; it may affect adherence to treatment of patients with schizophrenia.

To investigate the beliefs about the causes of schizophrenia among families of patients with schizophrenia.

We led a cross sectional descriptive study involving 32family members of patients suffering from schizophrenia who were followed in the psychiatry department of Hedi Chaker University Hospital in Sfax (Tunisia), between May to September 2019. Data was collected from the medical records and the questionnaire designed to the study.

The mean age of the relatives was 60.8 years, with a sex-ratio of 1.6. The relatives included 20 fathers (62.5%), six wives (18.8%), three mothers (9.4%), and three sisters (9.4%). Among them, 37.5 % were illiterate; 37.5% lived in rural area. Fourteen participants (43.8%) had cited at least two possible causes of schizophrenia. The most frequently cited causes were emotional shock (81%) and god’s will or fate (72%) followed by witchcraft (37.7%). The belief of God’s will and fate was associated with poor compliance to treatment (p=0.06). The belief of supernatural cause was correlated to rural origin (p=0.000) and advanced age of participants (p=0.000).Significant correlation was also found between family history of mental disorders and beliefs on hereditary causes (p=0.000).

These results suggest that family members of patients suffering from schizophrenia need to be better informed about its main causes to improve both compliance to treatment and social integration of this patients.

Dignity therapy (DT) is a kind of psychotherapy that identifies the main concerns of end-of-life patients that affect their perception of dignity and helps them to find a new meaning in life. Most prior studies on DT analyze outcomes for palliative care patients. The aim of this systematic review is to explore the outcomes of DT in palliative care patients’ family members.

In June 2020, a bibliographic search was performed using the terms “Dignity Therapy” and “Palliative Care” in the following databases: Cochrane library, TRIP database, PUBMED, Scopus, and Web of Knowledge. Of the 294 articles found, 8 met the selection criteria and were considered in the present study. No articles were excluded based on their publication date.

Family members generally believe that DT helps them to better prepare the patient's end-of-life and overcome the bereavement phase. The legacy document was considered a source of comfort, and most would recommend DT to other people in their situation. DT is generally considered as important as any other aspect of the patient's treatment.

There is evidence of the benefits of DT for palliative patients’ family members. However, there are still few studies that evaluate these outcomes. The existing evidence is poorly generalized, and thus, further studies are needed to deeply explore the benefits of this therapy both for patients and their families.

To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members’ perspective.

A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20−90 years old, 70% women) of people who died in hospital was employed to meet the study aim.

Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40).

This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members’ reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.

Investigation into the family burden (FB) of schizophrenic patients has recently risen sharply. Nevertheless, to date there has been little consensus as to what factors influence the FB. The purpose of this study is to acquire a greater insight into the variables that influence the FB.

The FB was measured with the interview for the family burden (Kluiter H, Kramer JJAM, Wiersma D, et al. Interview voor de belasting van de familie 1997 [Interview for the burden on the family]. Department Sociale Psychiatrie. Groningen: Rijksuniversiteit). One hundred and fifty family members (parents/partners) of schizophrenic patients participated in the study.

The results of our study show (1) that family members experience burden both on a practical and an emotional level, (2) a highly significant correlation between the amount of symptomatic behaviour of the patient and FB, (3) that parents had taken on more tasks, had contributed more financially and had experienced a tenser atmosphere at home than partners did and (4) that family members of patients who have been treated for less than 1 year worry more about the other members of their family than family members of patients who have been receiving treatment for more than 1 year.

Family members of schizophrenic patients experience burden on a practical, financial and emotional level and the extent of the burden is closely linked to the amount of symptomatic behaviour of the patient.

The purpose of this study was to report the psychometric properties, in terms of validity and reliability, of the Unconscious Version of the Family Decision-Making Self-Efficacy Scale (FDMSE).

A convenience sample of 215 surrogate decision-makers for critically ill patients undergoing mechanical ventilation was recruited from four intensive care units at a tertiary hospital. Cross-sectional data were collected from participants between days 3 and 7 of a decisionally impaired patient's exposure to acute mechanical ventilation. Participants completed a self-report demographic form and subjective measures of family decision-making self-efficacy, preparation for decision-making, and decisional fatigue. Exploratory factor analyses, correlation coefficients, and internal consistency reliability estimates were computed to evaluate the FDMSE's validity and reliability in surrogate decision-makers of critically ill patients.

The exploratory factor analyses revealed a two-factor, 11-item version of the FDMSE was the most parsimonious in this sample. Furthermore, modified 11-item FDMSE demonstrated discriminant validity with the measures of fatigue and preparation for decision-making and demonstrated acceptable internal consistency reliability estimates.

This is the first known study to provide evidence for a two-factor structure for a modified, 11-item FDMSE. These dimensions represent treatment and palliation-related domains of family decision-making self-efficacy. The modified FDMSE is a valid and reliable instrument that can be used to measure family decision-making self-efficacy among surrogate decision-makers of the critically ill.

The impact of traumatic brain injury (TBI) extends beyond the person who was injured. Family caregivers of adults with moderate to severe TBI frequently report increased burden, stress and depression. Few studies have examined the well-being of family members in the mild TBI population despite the latter representing up to 95% of all TBIs.

Five areas of well-being were examined in 99 family members (including parents, partners, siblings, other relatives, adult children, friends or neighbours) of adults (aged ≥16 years) with mild TBI. At 6- and 12-month post-injury, family members completed the Bakas Caregiver Outcomes Scale, Short Form-36 Health Survey, EQ-5D-3L, Hospital Anxiety and Depression Scale and the Pittsburgh Sleep Quality Index. Outcomes and change over time and associated factors were examined.

At 6 months, group mean scores for health-related quality of life for mental and physical components and overall health status were similar to the New Zealand (NZ) population. Mean scores for sleep, anxiety and depression were below clinically significant thresholds. From 6 to 12 months, there were significant improvements in Bakas Caregiver Outcomes Scale scores by 2.61 (95% confidence interval: 0.72–4.49), health-related quality of life (mental component) and EQ-5D-3L overall health (P = 0.01). Minimally clinically important differences were observed in overall health, anxiety, health-related quality of life and depression at 12 months. Female family members reported significant improvements in physical health over time, and more positive life changes were reported by those caring for males with TBI.

The findings suggest diminished burden over time for family members of adults with mild TBI.

Chronic heart failure is a disease with high morbidity and symptom burden for patients, and it also places great demands on family members. Patients with heart failure should have access to palliative care for the purpose of improving quality of life for both patients and their families. In the PREFER randomized controlled intervention, patients with New York Heart Association classes III–IV heart failure received person-centered care with a multidisciplinary approach involving collaboration between specialists in palliative and heart failure care. The aim of the present study was to describe family members' experiences of the intervention, which integrated palliative advanced home and heart failure care.

This study had a qualitative descriptive design based on family member interviews. Altogether, 14 family members participated in semistructured interviews for evaluation after intervention completion. The data were analyzed by means of content analysis.

Family members expressed gratitude and happiness after witnessing the patient feeling better due to symptom relief and empowerment. They also felt relieved and less worried, as they were reassured that the patient was being cared for properly and that their own responsibility for care was shared with healthcare professionals. However, some family members also felt as though they were living in the shadow of severe illness, without receiving any support for themselves.

Several benefits were found for family members from the PREFER intervention, and our results indicate the significance of integrated palliative advanced home and heart failure care. However, in order to improve this intervention, psychosocial professionals should be included on the intervention team and should contribute by paying closer attention and providing targeted support for family members.

Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care.

Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description.

Patients' experiences were represented by three themes: “safe at home,” “facilitated and more honest communication,” and “feeling like a unit of care.” Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals.

Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

Palliative care research is relatively diverse and prioritizing research in this field is dependent on multiple factors such as complex ethical decisions in designing and conducting the research; access to participants who may be deemed “vulnerable” and an increasingly medically focused approach to care. The aim of this study was to inform organizational decision-making and policy development regarding future research priorities for a hospice service in New Zealand.

A modified three-round Delphi technique was employed. Participants were drawn from one dedicated specialist palliative care service that delivers care in the community, day-care, hospice inpatient, aged residential care, and acute hospital palliative care service. A purposive sample included palliative care staff (n = 10, 18, 9, for rounds 1–3, respectively) volunteers (n = 10, 12, 11); and patients and family carers (n = 6, 8, for rounds 1 and 2). Patients and family carers were not involved in the third round.

At final ranking of six research themes encompassing 23 research topics were identified by staff and volunteers. These were: symptom management; aged care; education; community; patient and family; and bereavement support and young people. Patients and family carers agreed on four themes, made up of 10 research topics. These were: decision-making, bereavement and loss, symptom management; and recognition of need and response of service.

The study generated a rich set of research themes and specific research topics. The perspectives of staff and volunteers are significantly different from those of patients and family members, in spite of the recognition by all concerned that palliative care services work within a philosophy of patient-centered care. Open discussion of ideas has the potential to engage both staff and patients and carers in quality improvement initiatives, and to reinforce the value of research for patient care.

The objective of our study was to determine the satisfaction levels of family members of patients with advanced-stage cancer.

This descriptive study was conducted in the palliative care and medical oncology clinics of a university hospital in the province of Izmir between April of 2011 and January of 2012. The study sample consisted of a total of 145 family members, who were selected from among the family members of patients with advanced-stage cancer receiving palliative treatment. The study data were obtained using the Patient Description Form and Family Satisfaction Scale during face-to-face interviews with patients.

Some 67% of patients were female and 33% male, 70% were married, 35% were high school graduates, and 34.5% were housewives. The average total family satisfaction score was 76.87 ± 1.14, and the average scores for the component variables were as follows: information giving 74.37 ± 1.28, availability of care 78.40 ± 1.17, physical care 78.99 ± 1.09, and psychosocial care 74.52 ± 1.30. We found a relationship between the level of satisfaction of family members and (1) gender, (2) occupation, (3) presence of someone supporting the care, and (4) possession of sufficient information about the patient (p < 0.05).

Satisfaction levels of participants were determined to be high. We found that family member satisfaction levels were affected by gender and occupation, the existence of someone supporting the care, and possession of sufficient information about the patient.

Surrogates involved in decisions to limit life-sustaining treatment for a loved one in the intensive care unit (ICU) are at increased risk for adverse psychological outcomes that can last for months to years after the ICU experience. Post-ICU interventions to reduce surrogate distress have not yet been developed. We sought to (1) describe a conceptual framework underlying the beneficial mental health effects of storytelling, and (2) present formative work developing a storytelling intervention to reduce distress for recently bereaved surrogates.

An interdisciplinary team conceived the idea for a storytelling intervention based on evidence from narrative theory that storytelling reduces distress from traumatic events through emotional disclosure, cognitive processing, and social connection. We developed an initial storytelling guide based on this theory and the clinical perspectives of team members. We then conducted a case series with recently bereaved surrogates to iteratively test and modify the guide.

The storytelling guide covered three key domains of the surrogate's experience of the patient's illness and death: antecedents, ICU experience, and aftermath. The facilitator focused on the parts of a story that appeared to generate strong emotions and used nonjudgmental statements to attend to these emotions. Between September 2012 and May 2013, we identified 28 eligible surrogates from a medical ICU and consented 20 for medical record review and recontact; 10 became eligible, of whom 6 consented and completed the storytelling intervention. The single-session storytelling intervention lasted from 40 to 92 minutes. All storytelling participants endorsed the intervention as acceptable, and five of six reported it as helpful.

Surrogate storytelling is an innovative and acceptable post-ICU intervention for recently bereaved surrogates and should be evaluated further.

To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service.

Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregation

Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received.

Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.

The aim was to explore adults’ experiences of their family members’ use of interpreters in health-care encounters.

Language barriers are a major hindrance for migrants to receive appropriate healthcare. In a foreign country, family members often need support in care of migrant patients. No previous studies focusing on adult family members’ experiences of the use of interpreters in healthcare have been found.

A purposive sample of 10 adult family members with experiences of the use of interpreters in health-care encounters. Data were collected between May and September 2009 by focus-group interviews and analysed with qualitative analysis according to a method described for focus groups.

Three categories emerged from the analysis: (1) Experiences of the use of professional interpreters, (2) Experiences of being used as an interpreter and (3) Experiences of what needs to be improved when using interpreters. The main findings showed no agreement in family members’ experiences; interpretation should be individually and situationally adapted. However, when family members acted as interpreters, their role was to give both practical and emotional support, and this led to both positive and negative emotions. Use of simple language, better collaboration in the health-care organization and developing the interpreters’ professional attitude could improve the use of professional interpreters. The type of interpreter, mode of interpretation and patient's preferences should be considered in the interpretation situation. In order to achieve high-quality healthcare, health-care professionals need to organize a good interpretation situation case-by-case, choose the appropriate interpreters with the patient in focus and cooperate with members of the patient's social network.

Aim — To point out the degree of satisfaction of psychotic patients and their family members in relation to the assistance given by the four Outpatient Mental Health Services in the Savona Department. Methods — patients with a diagnosis of psychosis were selected among those visited during the period from the 1st of January to the 30th of April 2002. VSSS—54 item, was utilized. Results — The analysis, conducted on 301 patients and 149 family members, highlighted: 1) a substantially positive assessment of the Services 2) the patients and their family members quite agreed on the evaluation of the different areas of satisfaction 3) Strong points: all the operators' human and professional skills 4) request of a better knowledge of the Service's programmes and more information to the public opinion 5) request of more collaboration with family doctors and other specialists 6) The worst criticism: the Service's response to night and holiday emergency. Conclusions — The patients and their family members reacted positively to the survey, that created more resistance on the part of the operators. The survey is not to be considered the final objective, but the point of departure for a new form of collaboration between the users and the operators.

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