Caring for patients with eating deficiencies in palliative care-Registered nurses' experiences: A qualitative study.

AIMS AND OBJECTIVES: The aim was to explore RNs' experiences of caring for patients with eating deficiencies in palliative care. BACKGROUND: Food and mealtimes are fundamental aspects for wellbeing and social interactions. The worldwide trajectory of ageing populations may result in increased need for palliative care. Everyday life with chronic life limiting illness and eating deficiencies is challenging for patients and families. RNs are key care providers at end-of-life. DESIGN: A qualitative study with an inductive approach was used. METHODS: Nineteen experienced RNs in palliative care were interviewed through telephone; interviews were audio recorded and transcribed verbatim. Inductive qualitative content analysis was performed, and the COREQ checklist was used to guide proceedings. RESULTS: The overarching theme, Supporting persons with eating deficiencies in-between palliative care and end-of-life care, is represented by three sub-themes: Easy to stick with doing, Just being, without doing, is hard and Letting go. Near end-of-life, eating symbolized social belonging and quality of life for RNs, whereas for patients and families, eating symbolized life. RNs tried practical solutions, however, not always according to patients' and families' preferences. CONCLUSIONS: RNs were well prepared to tackle physical inconveniences and provide support, however, less prepared to encounter existential, psychological and social issues in relation to eating deficiencies. Although RNs stated that human beings stop eating when they are about to die, letting nature run its' course and facilitating patients' transition to end-of-life care was challenging. RELEVANCE TO CLINICAL PRACTICE: Food and mealtimes represent fundamental aspects of human life and denote central parts in RNs clinical practice in palliative care. The findings can inspire development of a comprehensive palliative care approach to support patients and families. Structured reflection in relation to clinical practice may support and encourage RNs, caring for patients with eating deficiencies, in mastering both doing and being.

Experiences of food and mealtime from the perspective of patients with chronic life-limiting disease: A mixed-method systematic review.

AIM: To describe and synthesise experiences of food and mealtimes from the perspective of patients with chronic life-limiting disease. DESIGN: A mixed-method systematic review. DATA SOURCES: The databases Academic Search Complete, CINAHL, Nursing and Allied Health Database, PsycINFO, PubMed, Soc Index and Web of Science Core Collection were searched (January 2000 to March 2019). REVIEW METHODS: Out of 3151 identified articles, 24 were included for appraisal and synthesis, using a data based convergent design. RESULTS: Four themes were derived: 'understanding hampered eating-perhaps it is best to let nature run its course'; 'food and meals evoke distress-reducing joy, testing interim ways'; 'struggling with food and meals-eating to please others and to postpone death'; and 'food and meals as caring and love-flanked by social disconnecting'. CONCLUSION: For patients with chronic life-limiting disease, food entailed potential to remain healthy, improve well-being and prolong life. Meanwhile, eating difficulties were experienced as fundamentally affecting social life and interactions; consequently, joy around food and meals was lost.

Homeless persons' experiences of health- and social care: A systematic integrative review.

Homelessness is associated with high risks of morbidity and premature death. Many interventions aimed to improve physical and mental health exist, but do not reach the population of persons experiencing homelessness. Despite the widely reported unmet healthcare needs, more information about the barriers and facilitators that affect access to care for persons experiencing homelessness is needed. A systematic integrative review was performed to explore experiences and needs of health- and social care for persons experiencing homelessness. The following databases were searched: AMED, ASSIA, Academic Search Complete, CINAHL, Cochrane library, Nursing and Allied Database, PsycInfo, PubMed, Scopus and Web of Science Core Collection. Twenty-two studies met the inclusion criteria of empirical studies with adult persons experiencing homelessness, English language, and published 2008-2018. Fifty percent of the studies were of qualitative and quantitative design, respectively. Most studies (73%) were conducted in the United States (n=11) and Canada (n=5). The analysis resulted in three themes Unmet basic human needs, Interpersonal dimensions of access to care, and Structural and organizational aspects to meet needs. The findings highlight that persons in homelessness often must prioritize provision for basic human needs, such as finding shelter and food, over getting health- and social care. Bureaucracy and rigid opening hours, as well as discrimination and stigma, hinder these persons' access to health- and social care.

Brief admission (BA) for patients with emotional instability and self-harm: nurses' perspectives - person-centred care in clinical practice.

Purpose: Emotional instability and self-harm pose major problems for society and health care. There are effective interventions in outpatient care, but when patients need inpatient care, nurses often struggle meeting their patient's needs. Brief admission (BA) is a newly implemented crisis intervention and novel form of inpatient care. The aim of this study is to describe nurses' experiences working with BA related to patients with emotional instability and self-harm. Methods: Eight nurses were interviewed according to a semi-structured interview guide. The data was analysed using qualitative content analysis. Results: Four main categories emerged regarding nurses' experiences with BA: provides security and continuity, fosters caring relationships, shifts focus towards patient's health and empowers the patient. The nurse's role shifted from "handling problems" to establishing caring relationships with a focus on the person's health and possibilities for recovering instead of psychiatric symptoms. Conclusions: Previous studies on patients' perspective of BA describe positive experiences such as increased autonomy and participation in the healthcare process. This study supports those findings, albeit from the perspective of nurses. Our findings suggest that BA may reduce work-related stress experienced by nurses while caring for persons with emotional instability and self-harm. BA may also support nurses in their ability to provide more meaningful and constructive psychiatric inpatient care.

Communication skills in nursing: A phenomenologically-based communication training approach.

The aim of this article is to present a communication skills training curriculum for nursing students, based upon phenomenology. Research shows that nurses have difficulty prioritizing dialogue with patients, due to lack of time, organizational and cultural factors. Like other health care professionals, nurses may also have difficulties communicating with patients due to personal fears and shortcomings. The communication training curriculum based upon phenomenology aims at systematically training students to stay focused upon patients' and relatives' narratives, allowing them to reflect upon and better understand their current situation. This approach to communication is applicable in any clinical situation where it important to provide space for the patients' experiences. The philosophical principles guiding the training are presented here as well as the practical steps in the program. Finally, the approach is compared to other common communication methods used in nursing (motivational interviewing, caring conversations, empathy training). The authors hope that the article will highlight the nurses' role as dialogue partner as well as emphasize the importance of communication skills training in nursing education. This approach can be refined, tested and modified in future research and may serve as an inspirational model for creating a generic communicative competence for nurses. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Encountering the Body at the Site of the Suicide: A Population-Based Survey in Sweden.

Encountering the body of a child who died by suicide at the site of death is believed to be especially harmful for bereaved parents. We investigated the association between encountering the body at the site of the suicide and psychological distress in 666 suicide-bereaved parents. Parents who had encountered their child's body at the site of the suicide (n = 147) did not have a higher risk of nightmares (relative risk [RR] 0.95, 95% confidence interval [CI] 0.67-1.35), intrusive memories (RR 0.97, 95% CI 0.84-1.13), avoidance of thoughts (RR 0.97, 95% CI 0.74-1.27), avoidance of places or things (RR 0.91, 95% CI 0.66-1.25), anxiety (RR 0.93, 95% CI 0.64-1.33), or depression (RR 0.94, 95% CI 0.63-1.42) compared with parents who had not encountered the body (n = 512). Our results suggest that losing a child by suicide is sufficiently disastrous by itself to elicit posttraumatic responses or psychiatric morbidity whether or not the parent has encountered the deceased child at the site of death.

Depression among Parents Two to Six Years Following the Loss of a Child by Suicide: A Novel Prediction Model.

BACKGROUND: Parents who lose a child by suicide have elevated risks of depression. No clinical prediction tools exist to identify which suicide-bereaved parents will be particularly vulnerable; we aimed to create a prediction model for long-term depression for this purpose. METHOD: During 2009 and 2010 we collected data using a nationwide study-specific questionnaire among parents in Sweden who had lost a child aged 15-30 by suicide in years 2004-2007. Current depression was assessed with the Patient Health Questionnaire (PHQ-9) and a single question on antidepressant use. We considered 26 potential predictors assumed clinically assessable at the time of loss, including socio-economics, relationship status, history of psychological stress and morbidity, and suicide-related circumstances. We developed a novel prediction model using logistic regression with all subsets selection and stratified cross-validation. The model was assessed for classification performance and calibration, overall and stratified by time since loss. RESULTS: In total 666/915 (73%) participated. The model showed acceptable classification performance (adjusted area under the curve [AUC] = 0.720, 95% confidence interval [CI] 0.673-0.766), but performed classification best for those at shortest time since loss. Agreement between model-predicted and observed risks was fair, but with a tendency for underestimation and overestimation for individuals with shortest and longest time since loss, respectively. The identified predictors include female sex (odds ratio [OR] = 1.84); sick-leave (OR = 2.81) or unemployment (OR = 1.64); psychological premorbidity debuting during the last 10 years, before loss (OR = 3.64), or more than 10 years ago (OR = 4.96); suicide in biological relatives (OR = 1.54); with non-legal guardianship during the child's upbringing (OR = 0.48); and non-biological parenthood (OR = 0.22) found as protective. CONCLUSIONS: Our prediction model shows promising internal validity, but should be externally validated before application. Psychological premorbidity seems to be a prominent predictor of long-term depression among suicide-bereaved parents, and thus important for healthcare providers to assess.

Lack of Trust in the Health-Care System After Losing a Child to Suicide.

BACKGROUND: Lack of trust in the health-care system after losing a child to suicide may prevent bereaved parents from seeking professional treatment when needed, thus diminishing their chances of recovery. AIMS: This is the first large study to aim at evaluating the incidence of lack of trust in the health-care system and associated variables in suicide-bereaved parents. METHOD: This nationwide population-based survey included 569 parents who lost a child to suicide 2-5 years earlier and a matched comparison group of 326 nonbereaved parents. Using a study-specific questionnaire, we asked bereaved and nonbereaved parents if they trusted the health-care system and measured psychological and background variables. RESULTS: Prevalence of lack of trust in the health-care system differed between the bereaved (46.5%) and the nonbereaved parents (18.3%), giving a relative risk of 2.5 (95% CI = 2.0-3.3). After multivariable modeling, high scores of depression, living in big cities, and being single were identified as variables associated with lack of trust in suicide-bereaved parents. CONCLUSION: Suicide-bereaved parents show lack of trust in the health-care system. We present possible effect modifiers that may be considered in professional interventions aiming at influencing suicide-bereaved parents' level of trust.

Suicide-bereaved siblings' perception of health services.

The authors investigated suicide-bereaved siblings' reported reasons for seeking or not seeking professional support, their reported satisfaction when receiving it, and their recommendations to health services when meeting suicide-bereaved siblings. Using qualitative content analysis of 18 interviews with suicide-bereaved siblings, the authors found that the perception of health services as being helpful was influenced by both the participants' and by the deceased siblings' experiences with health services. They conclude that the bereaved sibling's and the deceased sibling's unmet needs may generate negative attitudes toward health services, which reduces the likelihood of seeking professional help as well as medication acceptance in some cases.

Viewing the body after bereavement due to suicide: a population-based survey in Sweden.

BACKGROUND: Research on the assumed, positive and negative, psychological effects of viewing the body after a suicide loss is sparse. We hypothesized that suicide-bereaved parents that viewed their childs body in a formal setting seldom regretted the experience, and that viewing the body was associated with lower levels of psychological morbidity two to five years after the loss. METHODS AND FINDINGS: We identified 915 suicide-bereaved parents by linkage of nationwide population-based registries and collected data by a questionnaire. The outcome measures included the Patient Health Questionnaire (PHQ-9). In total, 666 (73%) parents participated. Of the 460 parents (69%) that viewed the body, 96% answered that they did not regret the experience. The viewing was associated with a higher risk of reliving the child's death through nightmares (RR 1.61, 95% CI 1.13 to 2.32) and intrusive memories (RR 1.20, 95% CI 1.04 to 1.38), but not with anxiety (RR 1.02, 95% CI 0.74 to 1.40) and depression (RR 1.25, 95% CI 0.85 to 1.83). One limitation of our study is that we lack data on the informants' personality and coping strategies. CONCLUSIONS: In this Swedish population-based survey of suicide-bereaved parents, we found that by and large everyone that had viewed their deceased child in a formal setting did not report regretting the viewing when asked two to five years after the loss. Our findings suggest that most bereaved parents are capable of deciding if they want to view the body or not. Officials may assist by giving careful information about the child's appearance and other details concerning the viewing, thus facilitating mental preparation for the bereaved person. This is the first large-scale study on the effects of viewing the body after a suicide and additional studies are needed before clinical recommendations can be made.

Psychological morbidity among suicide-bereaved and non-bereaved parents: a nationwide population survey.

OBJECTIVE: To determine how psychological premorbidity affects the risk of depression in parents who lost a child through suicide. DESIGN: Population-based survey. SETTING: Sweden, between 2009 and 2010. PARTICIPANTS: All parents who lost a child, age 15-30, through suicide between 2004 and 2007 according to National population registries. Non-bereaved parents matched for age, sex, living area, marital status, number of children. EXCLUSION CRITERIA: born outside a Nordic country, not Swedish speaking, contact details missing. Participants: 666 of 915 (73%) suicide-bereaved and 377 of 508 (74%) non-bereaved parents. MAIN OUTCOME MEASURES: Depression measured by the nine-item depression scale of the Patient Health Questionnaire (PHQ-9) and study-specific questions to assess psychological premorbidity and experience of the child's presuicidal morbidity. RESULTS: In all, 94 (14%) suicide-bereaved and 51 (14%) non-bereaved parents (relative risk 1.0; 95% CI 0.8 to 1.4) had received their first treatment for psychological problems or had been given a psychiatric diagnosis more than 10 years earlier. The prevalence of moderate-to-severe depression was 115 (18%) in suicide-bereaved versus 28 (7%) in non-bereaved parents (RR 2.3; 95% CI 1.6 to 3.5). For those without psychological premorbidity, the relative risk was 2.3 (95% CI 1.4 to 3.6). 339 (51%) suicide-bereaved parents expressed worry over the child's psychological health during the month preceding the suicide and 259 (39%) had anticipated the suicide. CONCLUSIONS: In parents who lost a child through suicide in Sweden we did not find a higher prevalence of long-term psychological premorbidity than among parents who had not lost a child; the more than twofold risk of depression among the bereaved can probably be explained by the suicide and the stressful time preceding the suicide.

Preparatory studies to a population-based survey of suicide-bereaved parents in Sweden.

BACKGROUND: There is a need for evidence-based guidelines on how professionals should act following a suicide. In an effort to provide empiric knowledge, we designed a nationwide population-based study including suicide-bereaved parents. AIM: To describe the process from creating hypotheses through interviews to the development of a population-based questionnaire. METHOD: We used interviews, qualitative analysis and various means of validation to create a study-specific questionnaire to be used in a nonselected nationwide population of suicide-bereaved parents and a control population of nonbereaved (N = 2:1). The Swedish Register of Causes of Death and the Multigeneration Register were used to identify eligible individuals. All presumptive participants received a letter of invitation followed by a personal contact. RESULTS: We developed a questionnaire covering the participants' perception of participation, their daily living, psychological morbidity, professional actions, and other experiences in immediate connection to the time before and after the suicide. Almost three out of four parents (bereaved = 666, nonbereaved = 377) responded to the questionnaire. CONCLUSIONS: By involving parents early in the research process we were able to create a questionnaire that generated a high participation rate in a nationwide population-based study that might help us to answer our hypotheses about bereavement after suicide.