Communication about life-threatening disease and palliative care is essential but often experienced as difficult by those concerned and has mainly been studied in terms of its verbal components. Despite the fundamentality of nonverbal communication, its dimensions in care, especially in the communication by patients and their significant others, has not been as extensively examined. Drawing on a secondary qualitative content analysis of data from 23 interviews-15 with patients in specialized palliative home care in Sweden and 8 with their significant others-this study aims at understanding and characterizing how patients verbally express experiences of conveying nonverbal cues about life-threatening disease and its consequences and how their significant others express perceiving these cues. Patients expressed experiences of nonverbal communication in the form of cues conveying meaning about their disease and its consequences, often beyond their control. Whether and how the patients reinforced these cues verbally, depended on individual needs, care for others, and evaluations of relationships. Significant others acknowledged the presence of nonverbal cues and tried to interpret their meaning. Both patients and significant others emphasized the importance of nonverbal cues and actively related to how cues in the form of bodily appearance, aids, objects and acts, serve communicative functions about disease and its consequences. These dimensions of nonverbal communication are characterized as: body talk, extension talk and action talk. This study contributes to an international knowledge base on the complexities of nonverbal communicative aspects in these dimensions and how it affects patients and significant others. Professionals should be aware that dimensions of care, such as prescribed aids, from the patients' perspective can be perceived as nonverbal cues that might "speak of" disease progression.
Cues , Palliative Care , Humans , Nonverbal Communication , Communication , Patients
OBJECTIVES: 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. METHODS: 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. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.
Background: Although communication is strongly emphasized in palliative care, not much research has focused on communication between patients and their loved ones. The purpose was to increase understanding of communication around severe illness between patients with a life-threatening disease, receiving palliative care, and their loved ones. Secondary intention was to identify strategies making easier for patients to talk about their condition with loved ones. The article is based on in-depth interviews with 15 patients and 8 loved ones. Interviews were analysed using qualitative content analysis. Communication about patient's illness was often described as balancing between wanting to inform or know and wanting to protect. Both patients and loved ones deliberately talk in a way that reflects their relationship. They act, negotiate and communicate aiming at not wanting to create situations that are perceived as uncomfortable, either for themselves or for others. Patients also take everyday practicalities into account. In these interactions, some people become the patients' inner circle - people with whom information is shared and co-owned. Other people find themselves outside the circle and patients may use them as test-subjects - speaking to them about things they might not dare reveal to their inner circle. These considerations are reflected in the themes: What is communicated, How communication is performed, and When it takes place. Our findings show that acting on the ideals of an "open and honest" form of communication is not always to be recommended. Professionals must instead strive to understand and respect the intentions of those involved.
Hospice and Palliative Care Nursing , Palliative Care , Humans , Patients , Communication
Background: Metaphors are used by patients and professionals in the discourse of disease and can facilitate conversations about difficult topics. There is little information about metaphors present in patients' end-of-life dreams. Objective: Identify and interpret metaphors in end-of-life dreams, directly reported by patients in palliative care. Design: A qualitative study with a secondary analysis of transcribed face-to-face interviews with patients. Setting/Participants: The study includes 25 patients with end-stage disease receiving advanced end-of-life palliative care. In total, 41 interviews were performed. Results: Metaphors applicable to 3 themes were found: the journey toward death, the inevitability of death and death itself. The underlying meaning of the metaphors is often related to topics and emotions commonly relevant in dialogue with patients near death. Patients, however, often seemed unaware of the meaning of their dream metaphors. Conclusion: Metaphors pertaining to death are present in end-of-life dreams in patients with end-stage disease. We hypothesize that encouraging patients to talk about their dreams can expose metaphors that could facilitate end-of-life discussions.
Hospice Care , Hospice and Palliative Care Nursing , Humans , Palliative Care/psychology , Metaphor , Hospice Care/psychology , Qualitative Research , Death
Objetivo: El objetivo de este trabajo es describir y comparar el tipo y las características de atención al duelo en Europa y España, así como actualizar e identificar avances en España con el fin de mejorar la atención al duelo. Método: Estudio observacional, descriptivo, prospectivo y comparativo. Realizado a partir de los datos del grupo de trabajo de duelo de la EAPC relativos a España, recogidos mediante un cuestionario que consta de 54 preguntas en 6 secciones: antecedentes, apoyo, personal, acceso y niveles de cuidado, aspectos comunitarios, recursos y modelo de atención. Fue distribuido por correo electrónico a través de la EAPC a 56 asociaciones nacionales de CP. Las comparaciones entre Europa y España se realizaron utilizando la prueba de Chi-cuadrado de Pearson. Resultados: La atención al duelo se ofrece en el 83 % de los 314 servicios que responden en Europa y en el 73 % de 56 servicios en España, con datos similares a estudios anteriores españoles. La mayoría de servicios corresponden a unidades hospitalarias. El tipo de soporte o intervención especializada depende del nivel de atención en ambos grupos. En Europa, el 32 % dispone de directrices o guías nacionales de duelo en su país, en España el 61 % de los servicios, lo que facilita la actuación. Los instrumentos formales de riesgo son utilizados solo por una cuarta parte de los servicios. Conclusiones: Este estudio presenta un avance y un reto futuro en la atención al duelo en Europa y España. Los datos han mostrado que la atención al duelo no forma parte de todos los servicios. El número de respuestas a los cuestionarios no ha aumentado ni se han incrementado los servicios en España. Tanto en Europa como en España es necesario seguir potenciando, formalizando e incrementando servicios con atención al duelo, como una parte esencial de los cuidados paliativos. (AU)
Objetive: To describe and compare the type and characteristics of bereavement care in Europe and Spain. To update and identify advances in Spain for improving grief care. Method: An observational, descriptive, prospective and comparative study. Made on data from the EAPC bereavement group relating to Spain, collected through a questionnaire consisting of 54 questions in 6 sections: background; support; personal; access, levels of care; community aspects; resources and care model. It was distributed by online mail via the EAPC to 56 national PC associations. Comparisons between Europe and Spain were made using Pearsons χ2 test. Results: Bereavement care is offered by 83 % of the 314 responding services in Europe and in 73% of 56 services in Spain, with similar data to previous Spanish studies. Most services correspond to hospital units. The type of support or specialized intervention depends on level of care in both groups. In Europe, 27 % have National Grief Guides in their country, in Spain 61 % of services, which facilitates action. Formal risk instruments are used by only a quarter of the services. Conclusions: This study presents an advance and a future challenge in bereavement care in Europe and Spain. Data have shown that bereavement care is not included in all services. The numbers of responses to questionnaires have not increased, nor have services in Spain increased. Both in Europe and in Spain, it is necessary to continue promoting, formalizing and increasing services with attention to grief as an essential part of palliative care services. (AU)
Humans , Hospice Care , Palliative Care , Epidemiology, Descriptive , Prospective Studies , Spain , Surveys and Questionnaires , Europe
OBJECTIVES: To investigate the experiential impact of the COVID-19 pandemic on patients with non-COVID, life-threatening disease and their family carers. DESIGN: An interpretative qualitative design informed by phenomenological hermeneutics and based on data from in-depth interviews, performed between June and September 2020. SETTING: Patients receiving specialised palliative home care and their family carers living in Sweden. PARTICIPANTS: 22 patients (male/female 11/11) and 17 carers (male/female 5/12) aged 50 years and older. All the patients received specialised palliative home care and most were diagnosed with cancer. INCLUSION CRITERIA: aged 18 years or older, diagnosed with an incurable life-threatening, non-COVID disease, sufficient strength to participate and capacity to provide informed consent. Participants were selected through a combination of convenient and consecutive sampling. RESULTS: The significance of the pandemic for both patients and carers showed a continuum from being minimally affected in comparison to the severe underlying disease to living in isolation with constant fear of becoming infected and falling ill with COVID-19, which some likened to torture.The imposed restrictions on social contact due to the pandemic were particularly palpable for this group of people with a non-COVID-19, life-limiting condition, as it was said to steal valuable moments of time that had already been measured.Most patients and carers found access to specialised palliative home care was maintained despite the pandemic. This care was of paramount importance for their sense of security and was often their sole visiting social contact. CONCLUSIONS: In the pandemic situation, highly accessible support from healthcare and social care at home is particularly important to create security for both patients and carers. Thus, to provide appropriate support, it is important for healthcare and social care personnel to be aware of the great diversity of reactions patients in palliative care and their carers may have to a pandemic threat.
COVID-19 , Home Care Services , Aged , COVID-19/epidemiology , Caregivers , Female , Humans , Male , Middle Aged , Palliative Care , Pandemics , Qualitative Research , SARS-CoV-2
OBJECTIVE: End-of-life dreams and visions (ELDVs) have been suggested to be prevalent psychic phenomena near death that can provide meaning and comfort for the dying. There is a lack of studies from the secular Nordic countries. The aim of this study was to determine whether palliative care professionals in a Nordic country have experience of patients expressing dreams, visions, and/or inner experiences and, if so, how they are perceived. METHOD: Focus-group interviews with 18 professionals in end-of-life palliative care were subjected to qualitative content analysis. RESULTS: Most (15/18) professionals had experience of patients with ELDVs. A dominant content was deceased loved ones. According to most professionals, many patients perceived their ELDVs as real and could report them with clarity. The experience could result in peacefulness for patients, as well as loved ones, and reduce fear of death. Some professionals themselves perceived ELDVs to be real and a normal part of dying while a few found them scary. Most professionals, however, found ELDVs hard to grasp. Many tried to explain the phenomena as the result of medical circumstances and confusion, although reporting that they considered most patients to be normal and of sound mind in connection with their reports on ELDVs. Most patients wanted to talk about their ELDVs, but some could be reluctant due to fear of being considered crazy. The professionals were open-minded and reported having no problem talking about it with the patients and tried to normalize the experience thereby calming the patient and loved ones. SIGNIFICANCE OF RESULTS: The results strengthen the suggestion that ELDVs are common phenomena near death, worldwide. Although most professionals in palliative care recognized ELDVs as beneficial to patients, many found the phenomena hard to grasp and sometimes difficult to distinguish from confusion, indicating a continuous need for exploration and education.
Hospice Care , Terminal Care , Humans , Palliative Care/methods , Qualitative Research , Confusion , Death
BACKGROUND: The WHO definition of palliative care includes bereavement support as integral to palliative care, yet a previous survey of bereavement support in palliative care in Europe has shown a range of service responses to loss. A rigorous approach to agreeing and implementing a palliative care bereavement framework was required. AIM: The aim of this study was to develop consensus on best-practice recommendations for bereavement care principles, structures, processes and delivery based on current practice and evidence. DESIGN: In accordance with Guidance on Conducting and Reporting Delphi Studies, a consensus-building five-round Delphi technique was performed. A scoping review of research literature informed drafting of 54 statements by the EAPC Bereavement Task Force. Evaluation of the statements was performed by an expert panel using a 5-point Likert scale. ⩾80% agreement were defined as essential items and 75%-79% agreement were defined as desirable items. Items with a consensus rating <75% were revised during the process. SETTING/PARTICIPANTS: The Delphi study was carried out by an expert panel among membership organisations of the European Association for Palliative Care. RESULTS: In total, 376 email requests to complete Delphi questionnaire were distributed with a response rate of 23% (n = 87) and a follow-up response-rate of 79% (n = 69). Of the initial 54 statements in six dimensions, 52 statements were endorsed with 26 essential statements and 26 desirable statements. CONCLUSIONS: The six dimensions and 52 statements agreed through this Delphi study clarify a coherent direction for development of bereavement services in palliative care in Europe.
Hospice Care , Palliative Care , Consensus , Delphi Technique , Europe , Humans
BACKGROUND: Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers' support needs and quality of life when caring for a spouse receiving specialized palliative home care. METHODS: A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness - Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses. RESULTS: Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient's life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient's condition, and the family caregiver's own physical and emotional health. CONCLUSION: With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers' QoL by revealing their problems and concerns. Thus, tailored support is needed.
Home Care Services , Quality of Life , Caregivers , Cross-Sectional Studies , Humans , Palliative Care , Spouses
INTRODUCTION: Patients with life-threatening diseases have reportedly end-of-life experiences that are perceived positively. Loved ones and healthcare personnel may mistakenly interpret the phenomena as confusion and patients can be reluctant to talk about it due to fear of ridicule. Studies addressing patients directly are scarce and there is a lack of studies from highly secular countries. The aim was to establish whether end-of-life experiences are present among patients, oriented in time, place and person and receiving palliative end-of-life care in one of the world's most secular countries. If present, examine the content and patients' subjective experiences. DESIGN: Qualitative design with semi-structured, in-depth interviews. 25 participants, receiving end-of-life palliative care at home or in a hospice inpatient unit. RESULTS: Patients were interviewed on 1-3 consecutive occasions. 16/25 patients reported end-of-life experiences of which the majority were perceived to be positive. Four themes were identified: vivid dreams while asleep, experiences while awake, references to medical circumstances and communication about end-of-life experiences. Prevalent content was deceased and living loved ones and journeys. Some patients distinguished between hallucinations/nightmares and end-of-life experiences. CONCLUSIONS: End-of-life experiences are present among oriented patients in a highly secular country and can have a profound positive impact, which warrants clinical attention. Education for healthcare personnel about end-of-life experiences is needed in order to support patients and loved ones and not mistakenly medicalize. Further directions for research could be to study the experiences of the phenomenon among health care personnel in the same context, which could strengthen the present findings.
Hospice Care , Terminal Care , Death , Humans , Palliative Care , Qualitative Research
OBJECTIVES: Chronic diseases have an impact on and change patient's lives which means that they need to find ways to cope with the new situation. The aim was to describe how the chronic disease has influenced patients' views of their life situation. METHODS: The study was quantitative in design with data collected using a semi-structured questionnaire. Descriptive statistics were used to compare similarities and differences between patients with asthma-allergy, diabetes mellitus, cancer and inflammatory rheumatoid arthritis. RESULTS: Changes in their life were experienced as a negative outcome for the majority of participants. Support can be in the form of interpersonal support from various persons, but also from activities and beliefs/religion. Family and friends as well as healthcare professionals were identified as being most supportive. Sadness and worry were the most common emotions among the participants and their surrounding networks. CONCLUSION: People with a chronic disease have to live with the consequences the disease has for their life situation. They need to find strategies to cope with the negative outcome in their new life. Support from their own network and healthcare professionals can be helpful in the new life situation.
BACKGROUND: Timely identification of patients with palliative care needs is a prerequisite for being able to carry out effective and equal palliative care. The Supportive and Palliative Care Indicators Tool (SPICT) identifies patients likely to benefit from a palliative approach. AIM: The main objective was to describe the translation, cross-cultural adaptation and content validation process of the SPICT-SE. In this process, the prefinal SPICT-SE was tested in focus group interviews to explore how the tool was perceived and interpreted by healthcare professionals in a Swedish healthcare context. METHODS: In this qualitative descriptive study, the translation, cross-cultural adaptation and content validation process of the SPICT-SE was based on a recommended method for cross-cultural adaptation of self-report measures. The process included two independent forward translations, a synthesis, and one independent back-translation. An expert committee consolidated all the versions and developed the prefinal version of the SPICT-SE. The prefinal version of the SPICT-SE was tested in four focus group interviews with physicians and nurses engaged in inpatient or outpatient care in south-west Sweden. A thematic analysis of the transcribed interviews was performed. The SPICT-SE was then revised to the final version. RESULTS: In the thematic analysis, four themes were constructed that together described how the SPICT-SE was perceived and interpreted by healthcare professionals: The mindset is familiar and relevant; the tool needs to be adjusted in order to be clearer; the purpose and consequences of the tool are ambiguous; and the tool supports a palliative approach. CONCLUSION: The SPICT-SE has now been successfully translated, culturally adapted and content validated in a Swedish healthcare context.
Cross-Cultural Comparison , Culturally Competent Care/standards , Early Diagnosis , Hospice and Palliative Care Nursing/standards , Palliative Care/standards , Practice Guidelines as Topic , Psychometrics/standards , Adult , Aged , Aged, 80 and over , Decision Support Techniques , Female , Humans , Male , Middle Aged , Reproducibility of Results , Surveys and Questionnaires , Sweden , Translations
BACKGROUND: Chronic diseases have an impact on and can change the lives of the persons affected by them. This study examines how a disease can influence patients' daily lives, the strategies they adopt to cope, and their experiences of support. The study focuses on four chronic diseases: asthma-allergy, cancer, diabetes mellitus, and inflammatory rheumatic arthritis. METHODS: The study has a qualitative design and includes 41 transcribed in-depth interviews and a content analysis. RESULTS: The participants' new life situation was changed for a very long time or forever, and this was not a voluntary choice. The new life situation comprised the following themes: life-changing-the disease could be a turning point in a negative or positive way, strategies-designed to create ways of coping with daily tasks to find a good quality of life, and support-that could be obtained from the participants' private network or the healthcare professionals. CONCLUSIONS: The patients had to make changes in their daily life, and these could bring about different feelings and restrict activity. Healthcare professionals need more knowledge of the process of coping with such life-changing matters and what could strengthen patients and give a sense of empowerment in their lives.
PURPOSE: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context. METHODS: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated. RESULTS: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75). CONCLUSIONS: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care.
Caregivers/psychology , Family/psychology , Needs Assessment/statistics & numerical data , Nursing Staff, Hospital/psychology , Palliative Care/psychology , Patient-Centered Care/methods , Quality of Life/psychology , Adult , Aged , Aged, 80 and over , Caregivers/statistics & numerical data , Female , Humans , Male , Middle Aged , Psychometrics/methods , Reproducibility of Results , Sweden , Translations , United Kingdom
OBJECTIVE: The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population. DESIGN: We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis. SUBJECTS: The study utilized a population sample of 7684 persons aged 18-66, of which 2020 responded, stratified by gender, age and region. RESULTS: Most participants reported 'no' ( n = 827, 41%) or 'some' ( n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as 'care before death', 'pain relief', 'dignity' and a 'peaceful death'. The preferred place of care and death was one's own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term 'palliative care' was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers. CONCLUSIONS: This survey found limited awareness of palliative care in an adult sample of the Swedish general public ≤ 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.
Health Knowledge, Attitudes, Practice , Palliative Care , Adolescent , Adult , Aged , Female , Humans , Male , Middle Aged , Surveys and Questionnaires , Sweden , Young Adult
A prominent existential concept is that elderly parents should naturally become severely ill or die before a younger person does. If the reverse should happen, it may influence the parent's existential view of life. The aim of this study was to investigate the existential issues during illness time. This was a qualitative study with in-depth interviews and was conducted in a University Hospital in western Sweden. Eleven parents agreed to participate in individual interviews at baseline and 1 year later. The total number of interviews completed was 19. The study identified 5 areas according to an existential perspective: life took the wrong path, the age of the child, difficult to see the child as sick, worrying about the child, and the relationship with the adult child. Existential questions are often present in those circumstances and can be raised in conversations with parents. Existential questions began to arise for the parent when the child was diagnosed with the severe illness. The situation of having a severely ill child caused both fear and anxiety that the worst-case scenario they could imagine, that the child will die, might happen. Further research is required on this rarely investigated subject of having an adult child with a severe disease.
Adult Children , Existentialism/psychology , Neoplasms/mortality , Parents/psychology , Adaptation, Psychological , Attitude to Death , Humans , Interviews as Topic , Parent-Child Relations , Qualitative Research , Severity of Illness Index , Sweden
BACKGROUND: Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers' everyday work. RESEARCH OBJECTIVE: The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support the handling of these problems. RESEARCH DESIGN: Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach. Main participants and research context: A total of 15 registered nurses and 10 assistant nurses at a palliative unit (with 19 patient beds) at a major University Hospital in Sweden. Ethical considerations: The study followed standard ethics guidelines concerning informed consent and confidentiality. FINDINGS: We found six categories of ethical problems (with the main focus on problems relating to the patient's loved ones) and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies. DISCUSSION: The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies. CONCLUSION: Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems.
Ethics, Institutional , Ethics, Nursing , Organizational Culture , Palliative Care/ethics , Professional-Patient Relations , Adult , Aged , Attitude of Health Personnel , Caregivers , Female , Focus Groups , Hospitals, University , Humans , Male , Middle Aged , Program Development/methods , Qualitative Research , Sweden , Young Adult
When a family member dies, a bereavement period is taking place for all family members. The death of a parent during childhood is a highly stressful event. This study evaluates families' experiences of family support groups when a parent has died. Families were participate in groups for children, teenagers, young adults, and parents in seven sessions. The same topic which was discussed in all groups. The support groups were evaluated qualitatively and quantitatively. The participants were satisfied with the groups and experienced that the shared experience facilitated bereavement to proceed. The results indicate that families' experiences is being more open about feelings in their own family. A support group can be one possibility to help the whole family in the bereavement.
Adaptation, Psychological , Bereavement , Family Relations/psychology , Family/psychology , Self-Help Groups/organization & administration , Adolescent , Adult , Child , Female , Grief , Humans , Male , Social Support , Young Adult
BACKGROUND: Loved ones of a patient with an incurable disease will accompany the patient to the end of life. Health care professionals must discuss difficult matters with loved ones and be sure that they really understand the seriousness of the patient's disease. The study explore how the professionals do when they explore the grounds on which they make their assessment of loved ones' insight into a patient's fatal disease. METHOD: A qualitative design was chosen to gain deeper knowledge of professionals' perception of loved ones' understanding. The transcribed interviews were analysed using content analysis giving a richer understanding of the meaning of the content. RESULT: The participants assessed loved ones' insight into the fatal disease based on the course and content of the conversations they had with the loved ones. The professionals' assessments were based on how the loved ones talked and expressed themselves in words and behavior and on the type of questions posed by the loved ones. The loved ones' observations and hope as denial or a strategy also contributed to their assessment. CONCLUSION: Ways to communicate with loved ones are crucial when making an assessment. The different ways loved ones use hope and other strategies made it problematic for the professionals to use these as indicators of state of mind in this matter. Training in conversation skills could be one way to support professionals when discussing and managing these difficult situations.
Attitude to Health , Caregivers/psychology , Communication , Family/psychology , Medical Staff, Hospital/psychology , Professional-Family Relations , Terminal Care/psychology , Adult , Attitude of Health Personnel , Attitude to Death , Comprehension , Female , Humans , Male , Middle Aged , Young Adult
OBJECTIVE: The aim of the study was to explore the skills and strategies employed by professionals when having difficult conversations to provide information to loved ones as part of palliative care. METHOD: A qualitative design was chosen with in-depth interviews with nurses, assistant nurses and doctors a Hospital in Sweden and were analysed using content analysis. RESULTS: The interviews produced examples of strategies used by professionals when imparting difficult information to patient and loved ones. The results fell into three areas: 'Who is giving information', 'Structuring the conversation' and 'Different ways to convey a difficult message'. CONCLUSION: Using conversational skills and strategies in combination with a carefully planned structure appeared to facilitate difficult conversations with patients and loved ones. Further research is required, related to the specific circumstances in which the conversation takes place.
