Background/Aim Family caregivers and patients in palliative care are often mutually dependent, supporting each other through the impact of serious illness. The possibility to cope as a couple is of particular importance for family caregivers when providing care at home. A psycho-educational website was developed to support family caregivers in this situation. In short videos healthcare professionals and family caregivers (actors) interact, discussing issues known to be of importance for family caregivers, for example illness-related communication and planning for the future. This study aimed to explore influences of web-based support on experiences of mutual support between family caregivers and patients with life-threatening illness.

Methods This study was part of a randomised controlled trial and used a qualitative approach. In total, 8 couples were interviewed, one family caregiver and one patient together in each interview (age 46–85). Data were analysed using interpretive description.

Results Both family caregivers and patients appreciated the opportunity for family caregivers to have their own private platform of support. For each of them personally, and as a couple, it was relieving that also family caregivers’ needs gained attention and were put into focus. Family caregivers expressed feelings of normalisation as their own thoughts were addressed in the videos. Recognising the situations described in the videos was empowering, helping to cope with their own stress and strain, as well as facing the patient’s similar feelings. This facilitated their everyday life as a couple supporting each other in illness. Couples described themselves as being a team.

Conclusions This website, supporting family caregivers, influenced family caregivers’ and patients’ mutual life by enhancing understanding of the shared situation and how to approach it. Although only family caregivers did access the website, it was beneficial for both of them in their everyday life.

Background/Aims Even though in person supportive group interventions for family caregivers have been effective they can also be challenging to implement. Web-based support could be an alternative and hence we developed a website focused on a psycho-education for family caregivers. In short videos healthcare professionals and family caregivers (actors) interact, discussing issues known to be of importance for family caregivers. Informative texts and a moderated chat forum are also included. This study aimed to explore family caregivers’ experiences of the website while caring for a patient with life-threatening illness at home.

Methods The present study was a part of a randomised controlled trial and used a qualitative approach. Interviews were performed with 16 family caregivers (age 42–85); 12 partners, 2 adult children, 1 parent, and 1 sibling. Data were analysed using qualitative content analysis.

Results Family caregivers appreciated the flexibility and possibility to access the website at a time and place of their own convenience when ready to do so. Having access to the website was perceived as reassuring because caregivers knew they could access support when needed throughout the illness progression. Using the website made it easier to approach and reflect upon issues related to incurable illness and death, it also facilitated addressing such issues with the patient. The videos contributed to a sense of recognition and comfort when the family caregivers’ own thoughts, concerns, and feelings were described by others. This was important to gain new insights on difficulties and challenges in their role as caregivers. Family caregivers hesitated to use the chat forum even though they wanted to. They expressed waiting for others to initiate a conversation.

Conclusions Psycho-education content via a website allowed family caregivers to decide what support they wanted depending on needs, time, and situation. Future research should focus on evaluating effects of web-based support through experimental designs.

Background: Web-based interventions targeted at family caregivers has become a quickly expanding research field, none the least since a growing number of patients with incurable illness are being cared for at home. Spouses, who are also family caregivers, constitute an especially vulnerable group in need of support when they are cohabitating with the ill patient and research shows that communication regarding the illness is important, yet challenging. This study therefore explored effects of a family caregiver-targeted web-based psycho-educational intervention on communication about incurable illness and remaining life between spouses and patients receiving specialized home care.

Methods: The study had a pre-post-design. An intervention containing videos and texts about family caregiving was developed and made accessible via a website. Thirty-nine spouses (67% women, median age: 61) were recruited from specialised home care services. At baseline, and after 4 weeks of access to the website, spouses completed a questionnaire about communication with the patient regarding incurable illness and remaining life. Data was analyzed using the Wilcoxon signed-rank test.

Results: No significant changes were found between baseline and follow-up. Most spouses did, however, report having talked with the patient about the illness being incurable (64%) and how the illness affected the patient physically (64%) and psychologically (77%) during the past month already at baseline. Regarding communication about the remaining life and how to manage once the patient had passed away, 46–59% instead reported not having had these conversations with the patient ever.

Conclusions: A majority of the spouses had talked about aspects of the illness and its consequences already at baseline, indicating that these matters are important to spousal caregivers of patients with incurable illness. However, a sizeable portion had not ever talked to the patient about how to manage once the patient had passed away, suggesting there are barriers to such conversations that need to be further explored. Future research on web-based psychoeducational interventions targeted at family caregivers need to address barriers and the diverse support needs regarding communication, especially about the remaining life, among spouses of patients with incurable illness.

A completed cancer treatment does not automatically mean an end to the challenges often following cancer. The need for cancer rehabilitation grow as the number of people that survives cancer increases. It is not entirely clear which rehabilitation services are in demand or which actors should offer these. Through a literature review, this study has shed light on the role of civil society in the Nordic countries in rehabilitation after cancer, as well as study participants’ experiences of cancer rehabilitation. The results of the literature review show that few studies have been published addressing the role of civil society in cancer rehabilitation. People who have undergone a cancer disease often need support, and support from people in a similar situation was appreciated by many. The results state that civil society plays a significant role in the organization of cancer rehabilitation. 

During the COVID-19 pandemic major changes took place in Swedish society, changes that also affected patient organizations representing people with increased risk of severe illness of COVID-19. This study focuses on the initial phase of the COVID-19 pandemic and how patient organizations’ relationships with their members and other actors were affected. The study shows that patient organizations were fast to make the necessary organisational reforms and thus able to meet new urgent needs.

OBJECTIVES: Psychoeducational interventions for family caregivers have shown to be effective but not possible for all caregivers to attend; thus, web-based interventions may be a complement. This study aimed to evaluate feasibility of a web-based intervention, "narstaende.se," from the perspective of spouses of patients receiving specialized home care.

METHODS: A website was developed, containing videos with conversations between health-care professionals and family caregivers (actors), informative texts, links to further information, and a chat forum. The aim of the website is to provide support and promote preparedness for caregiving and death, and the content is theoretically and empirically grounded. The study had a descriptive cross-sectional design. Altogether, 26 spouses answered a questionnaire, before accessing the website, and 4 weeks after this, 12 spouses were interviewed. Descriptive statistics and qualitative content analysis were used.

RESULTS: Spouses experienced the website as being easy to use, welcoming, and with relevant content. Participating spouses would recommend "narstaende.se" to others in similar situations, and the majority found the website introduced timely. Videos seemed easily accessible and were most used, contributing to a feeling of recognition and sharing the situation. The online format was perceived as flexible, but still not all spouses visited the website, stating the desire for support in real life.

SIGNIFICANCE OF RESULTS: A web-based intervention can be feasible for spouses in specialized home care; however, the digital format is not suitable for everyone. Further research is needed to determine the website's potential to provide support and increase preparedness for family caregivers in general.

The purpose of this study was to (1) explore associations between preparedness for caregiving and preparedness for death among family caregivers of patients with advanced cancer and (2) explore modifiable preparedness factors, such as communication and support. Data was derived from a baseline questionnaire collected in specialized home care. The questionnaire included socio-demographics, the Preparedness for Caregiving Scale, and single items addressing preparedness for death, received support and communication about incurable illness. Data was analyzed using descriptive statistics and Spearman correlations. Altogether 39 family caregivers participated. A significant association was found between preparedness for caregiving and preparedness for death. Received support and communication about the illness was associated with higher levels of preparedness for caregiving and death. This study contributes to evidence on the association between preparedness for caregiving and death, but also that communication and support employed by healthcare professionals could improve family caregiver preparedness and wellbeing. 

Bakgrund Stöd till närstående är en grundläggande del av palliativ vård. Stödinterventioner som erbjudits i grupp in-real-life har utvärderats med positiva effekter. Det kan dock vara svårt för närstående att delta på grund av svårigheter att lämna den sjuke och formatet passar heller inte alla. Webbaserade lösningar kan möjliggöra för fler att ta del av stöd utifrån egna förutsättningar och behov. Olika alternativ finns men mer kunskap om webbaserat stöd behövs.

Syfte Att undersöka närståendes erfarenheter av stöd i samband med deltagande i en webbaserad intervention ’Närstående.se’ under pågående specialiserad hemsjukvård.

Metod Webbsidan ’Närstående.se’ är baserad på tidigare forskning och innehåller kortare filmer där vårdpersonal (autentisk) samtalar med närstående (skådespelare) om ämnen som ofta är angelägna för närstående. Filmerna kompletteras med fördjupande texter och på webbsidan finns ett modererat chattforum. Studien ingår i ett projekt med randomiserad kontrollerad design. Kvalitativa intervjuer genomfördes med 7 närstående varav 5 partners, 1 syskon och 1 dotter, mellan 46–80 år. Data analyserades med kvalitativ innehållsanalys.

Resultat Möjligheten att vid behov och i lugn och ro ta del av stöd hemifrån uppskattades. Närstående uttryckte att det genom ’Närstående.se’ kunde vara lättare att närma sig frågor om svår sjukdom och död. Användning av webbsidan gav närstående igenkänning, bekräftelse och normaliserande av svåra känslor. Att ta del av webbsidan bidrog till att svåra ämnen hamnade i fokus vilket kunde underlätta samtal inom familjen. Webbsidan hade använts i olika omfattning men vetskapen om att ha tillgång till den upplevdes som en trygghet.

Konklusion Närstående upplever att webbaserat stöd finns när de behöver det. Att närstående kan välja att ta del av specifikt stöd vid behov innebär att stödet blir personcentrerat och anpassat för deras behov.

Care at the Central station (“Vård på Centralen”) emerged when refugees arrived at Stockholm Central Station in the autumn of 2015. A single medical student quickly brought together two suitcases with compound articles and non-prescription drugs, and started, together with some friends, to help the arrivals. A few weeks later, the initiative had grown, and hundreds of care-educated volunteers were organized through social media. The result: an organization that was loosely organized, highly professionalized, network-oriented, primarily internet-based, and that met needs possibly beyond the scope of citizenship rights, but within the expectation of human rights. In the present text, we briefly describe and discuss this organization. We argue that in-depth knowledge of this type of organizations may be important in future situations of similar kind.

Mutual aid organizations in Sweden provide extensive social support and advocacy work. Restrictions and guidelines to limit the spread of COVID-19 have forced to these organizations adapting their ways of working significantly. We conducted remote interviews with representatives of nine such organizations. The results indicate that they largely have been able to continue to support their members, despite the changed conditions, creatively adjusting their activities using new solutions. In this paper, the results are discussed using resilience as a key concept, including its significance at both an individual and a societal level.

Food and meals are embedded in people’s everyday social life. For people with progressive life-limiting conditions eating is often obstructed. When a dying person is cared for at home, family members often take responsibility for the provision of food and mealtimes. Previous research has shown that the situation around mealtimes can be stressful for patients and their partners. The overall aim of this thesis was to to explore meanings of eating deficiencies at the end of life, from a patient and partner perspective Methods: Interpretive descriptive design was chosen as the study sought to explore experiences related to eating deficiencies. Data was based on repeated individual interviews with dying persons (study I) and retrospective individual interviews with partners 3-6 months after the death of ill persons (study II). Data collection and analysis were guided by the interpretive description method. Findings: The results from the two studies showed that eating deficiencies among people with progressive life-limiting conditions and their partners are existentially loaded markers of impending death (I, II). The results also show that eating deficiencies can influence relationships and social interaction in ways that may hamper the possibility of sharing moments together with friends and family members that are valuable during the last period of life (I). Conclusion: Efforts to minimize the distress people with eating deficiencies and progressive life-limiting conditions and their partners may experience are important for well-being. Person-centered approaches to acknowledge and support individuals’ own ways of experiencing and dealing with eating deficiencies are recommended that include a holistic perspective on food and eating.

The overall aim was to explore patients’, partners’, and registered nurses’ (RNs)experiences of mealtimes in palliative care contexts. Qualitative (studies I, II, IVand V) and quantitative (study IV) study designs were used to explore the experiences of mealtimes in palliative care from various perspectives. Three interview studies (studies I, II, V), a mixed-method systematic review (study III),and a cross-sectional study (study IV), were conducted. The findings showed that patient’s appreciated support that resembled their needs and wishes during hampered eating. Being encouraged to eat could both reduce and induce distress and well-being, social life was affected. Food and eating had existential loading (I, III). The partners described how they tried to support their dying partner by striving to maintain ordinariness around food and mealtimes, as well as finding new ways to support eating (II). RNs highlighted that food and mealtimes in palliative care cause psychosocial distress for patients and their families. Exploration implies that RNs perceptions align with patients’and families’, indicating awareness of the challenges that patients and families face (IV). RNs in palliative care are well prepared to support patients with eating challenges related to physical problems, but might be less prepared to support existential, psychological, and social needs (V).In conclusion, efforts to minimize the distress that patients and families experience in relation to mealtimes in palliative care are required. An area in need of further development is how to support RNs in communicating about food and mealtimes in palliative care to support patients’, partners’, and families’ well-being at the patient’s end-of-life.

A new type of organization emerged during the refugee crisis in the autumn 2015. Hundreds of professional care-educated volunteers were organized through social media. In this case study, the Care at the Central station (Vård på Centralen) in Stockholm is analyzed, focusing how the organization was established and organized. Care educated professionals usually provide care having its standpoint on a logic based on citizenship rights. During the refugee crisis, the professional resources were used within the expectation of human rights. The highly professionalized existed from start and enabled the rapid establishment and flexibility.

Food and eating are embedded in people's everyday social lives: at home with family members and as part of social interactions. For people with progressive life-limiting conditions, however, eating is often obstructed. The objective of the present study was to explore the meanings of living with eating deficiencies at the end of life among people admitted to specialist palliative home care.

This qualitative inductive study employed an interpretive descriptive approach. A dozen persons, with various diagnoses and eating deficiencies, admitted to two specialist palliative home care units, participated. Data were collected through individual repeated interviews. Data collection and analysis were guided by the interpretive description method.

The results reveal that eating deficiencies among people with progressive life-limiting conditions are existentially loaded markers of impending death. Finding ways to overcome declined food intake and hampered eating enabled our participants to feel able to influence their own well-being and remain hopeful. The results also showed that the eating deficiencies influenced participants' relationships and social interactions in ways that hampered their possibilities of sharing valuable moments together with friends and family members during the final period of life.

Efforts to minimize the distress that people experience in relation to the challenges they face with eating deficiencies are important for well-being at the end of life. Person-centered approaches to acknowledge and support individuals' own ways of experiencing and dealing with their eating deficiencies are recommended that include a multidimensional perspective on food and eating.

Aims and objectives: To explore partners’ experiences of everyday life in caring for a dying person with eating deficiencies at home.

Background: When a dying person receives care at home, eating deficiencies can influence everyday life for family members, who often take responsibility for the provision of food and meals. The literature reveals this to be emotionally stressful. Partners of dying persons are challenged both as caregivers and as partners who will soon lose their life companion. There is a need for studies that provide enhanced understanding about the influence of dying persons’ eating deficiencies on their partners, from the perspective of everyday life.

Design: A qualitative design was chosen to obtain experience-based knowledge of relevance for the clinical context of palliative home care.

Methods: Nine people were purposefully selected and interviewed three–six months after the death of their partner. Data collection and analysis were guided by an interpretive descriptive method.

Results: The partners described experiences of how eating deficiencies brought about changes in the participants’ everyday lives. Two patterns of experiences were identified: the challenge of doing the best for their dying partner around matters involving food and mealtimes, and experiences of striving to maintain ordinariness, including holding on to social values around food, despite experiences of unfamiliarity when the dying partners’ habits were changed.

Conclusion:Living close to a person who has eating deficiencies at the end of life is challenging, both from a caring perspective and for personal well-being.

Relevance to clinical practice: The findings can assist palliative home care teams and other healthcare professionals to give support that goes beyond giving practical advice about food. Initiating talk about the current situation around food and meals at home, by posing questions and opening the way for conversations, is suggested.

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.

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.

Bakgrund: Mat är ett måste för överlevad, men mat har även viktig roll för att vi ska må bra och känna delaktighet i vardagen. Med allt längre livslängd, lever allt fler människor med kronisk livs begränsandesjukdom, vilket innebär att ökade behov av vård och stöd relaterat till mat och måltider. Att leva med kronisk livsbegränsande sjukdom, innebär att någon gång under sjukdomsförloppet förändras matvanor jämfört med hur det var innan sjukdomen. Oavsett diagnos upplever många ätsvårigheter då aptit förändras och matintag blir mindre. Eftersom mat och måltider har en central roll i vardagen, medför ätsvårigheter oro för patienter och närstående.

Syfte: Att beskriva och syntetisera patienters erfarenheter av mat och måltider vid kronisk livsbegränsande sjukdom.

Metod: En systematisk mixed-method review genomfördes, med sökningar i Academic Search Complete, CINAHL, Nursing and Allied Health Database, PsycINFO, PubMed, Soc Index och Web of Science Core Collection, från januari 2000 - mars 2019. Av 3151 identifierade artiklar inkluderades 24 för syntetisering med en data baserad convergent design. Vid innehållsanalys kodades text som svarade mot syftet med beskrivande ord, t ex, fysiska hinder, oro, existentiellt. Två forskare arbetade parallellt och blindat vid inklusion, kvalitetsbedömning av artiklar (CASP, 2021) och innehållsanalys. Data jämfördes och tematiserades utifrån likheter och mönster (Sandelowski & Leeman, 2012). Alla steg och beslut diskuterades i forskargruppen för konsensus.

Resultat: Patienters erfarenheter av mat och måltider vid vid kronisk livsbegränsande sjukdom innebar fysiska, psykologiska, sociala och existentiella aspekter av lidande, hälsa och välbefinnande. Fyra teman identifierades: • Förståelse för hämmad aptit – det kanske är bäst att låta naturen ha sin gång. • Mat och måltider framkallar obehag – minskad glädje, nya strategier. • Kamp med mat och måltider – äta för att behaga samt skjuta upp döden. • Mat och måltider som omsorg och kärlek – flankerat av social frånkoppling.

Betydelse: Översikten kan bidra till ökad förståelse för patienternas situation och behov av stöd. Dess fokus kan utgöra grund för interventionsstudier avseende existentiell oro kring mat och måltider, samt en start för utveckling av kliniska riktlinjer för vård vid kronisk livsbegränsande sjukdom.