De 6 S:n, självbild, symtomlindring, sociala relationer, sammanhang, strategier och självbestämmande, har använts för att bidra till personcentrerad palliativ vård i Sverige sedan 1990-talet. De 6 S:n har traditionellt använts inom specialiserad palliativ vård, men passar också för allmän palliativ vård under hela livsspannet. Palliativ vård av barn ställer stora krav. Ett projekt där De 6 S:n används för att bidra till personcentrerad palliativ vård av barn kommer att presenteras. Inom äldreomsorg ställs stora krav på att bevara integritet och personcentrering när funktion, kognition och möjlighet till självbestämmande börjar avta. Vi presenterar forskning om hur kroppslig omvårdnad inom äldreomsorg kan bli mer personcentrerad och en modell för att förbättra självbestämmande och därmed bidra till en personcentrerad palliativ vård inom äldreomsorgen. De 6S:n har diskuterats, preciserats och utvecklats av det nationella 6S-nätverket för att beskriva det teoretiska innehållet och för att utveckla den praktiska användbarheten. Diskussionen är levande och ständigt fortgående för att förbättra personcentrerad palliativ vård för personer i olika åldrar och olika vårdkontext.

Det övergripande syftet med denna avhandling var att belysa vård i livets slut på vård- och omsorgsboende, med inriktning mot den kroppsliga omvårdnaden, utifrån äldre personers, undersköterskors och anhörigas perspektiv. Avhandlingen bygger på fyra delstudier. Tre analysmetoder användes;innehållsanalys (I & III), fenomenologisk hermeneutik (II) och fenomenografi(IV). Datainsamlingen omfattade individuella intervjuer (I, II & IV) och observation (III). Fynden visar att; (I) undersköterskor känner de äldre personerna och värnar deras självbestämmande, välbefinnande och värdighet. I sitt arbete fokuserar de främst på kroppslig omvårdnad. Äldre personer (II) upplever kroppslig omvårdnad som en assistans, växelvis i form av ett fängelse eller som en njutning. De värnar sitt självbestämmande, men anpassar sig efter de omständigheter som bestäms av andra. Det är främst undersköterskor som utför assisterad kroppslig omvårdnad (III), medan äldre tar del i det de kan, trots nedsatt kroppslig förmåga. Anhöriga räknar med att äldre personer utövar fullt självbestämmande gällande assisterad kroppslig omvårdnad (IV). Själva bidrar de med en assisterad kroppslig omvårdnad som inte innefattar intimhygien, medan de förblir observanta på undersköterskors arbete. Avhandlingen belyser att assisterad kroppslig omvårdnad kan överbrygga äldres kroppsliga begränsningar och leda till välbefinnande när självbestämmandet främjas. Sådan assisterad kroppslig omvårdnad kan utgöra en väsentlig del av en palliativ omvårdnad för äldre personer på vård- och omsorgsboende i livets slut.

Since increasing life expectance causes more persons to live longer with multiple diagnoses, we have a growing need of a well-functioning elderly-care. After the ”ÄDEL-reform” in Sweden, in 1992, when the responsibility for long-term medical care for elderly people was transferred from the county councils to the local authorities, an increasing number of older people die in nursing homes. This leads to an interest of studying the nursing care being given there.  The aim of the study was therefore to describe assistant nurses experiences of providing nursing care to older people during the last time of life in a nursing home. The study has been conducted by a content analysis based upon Seven interviews with assistant nurses having at least three years’ experience of working in a nursing home.

In the results of this study three themes appeared; a natural pathway towards death, the older person as a starting point for the nursing care and reciprocity and collaboration in spite of limiting conditions.

The assistant nurses consider dying at old age as a natural process, which they do not wish to hinder. They do not even talk to each other about it.  Instead they strive to be pliable to the process and responsive to the desires of the older people in order to provide them the best possible level of wellbeing during their last time of life. Inadequate staffing is partly hindering to this, but the problem is being avoided due to collaboration with the significant others of the older person.  Summarised, the nurse assistants nourish an underlying, at times explicit ambition to provide a person centred nursing care, which partly corresponds to a model of person centered palliative care, The 6 S:s. The results of this study are useful to nurses, since they are responsible of the nursing care given by assistant nurses. The results also elucidate the importance of the nursing care given by assistant nurses in a nursing home. Furthermore it would be of interest to study older persons experiences of receiving nursing care during their last time of life in a nursing home.

BACKGROUND: Among a growing population of older persons, many affected by multiple diseases and complex needs, are cared for in nursing homes. Previous studies of nursing homes have highlighted the importance of personalised palliative care. Nevertheless, we know little about whether everyday care practice involving assistant nurses and frail older persons accomplishes ethical encounters, especially in assisted bodily care. Therefore, the aim of this study was to understand and conceptualize the encounter between residents and assistant nurses in bodily care-situations at the end of life in a nursing home.

METHODS: Focused ethnographic design was used. Residents and assistant nurses from one nursing home in an urban Swedish area participated in this study. Data were collected for 6 months and consisted of 170 h of fieldwork, including participant observation and interviews. Observations and digitally recorded interviews were analysed thematically. Five public community stakeholders contributed to the analysis by discussing preliminary results and clinical implications in a focus group.

RESULTS: Four themes, each encompassing both barriers to and facilitators of ethical encounters in assisted bodily care, were identified: Coping with the impact of workplace demands; Interacting in dialogue and communication; Experiencing involvement in the provision of assisted bodily care; and Adapting to good care and comfort.

CONCLUSIONS: The findings suggest that accomplishing ethical encounters in assisted bodily care practice in a nursing home context has many barriers that are related to communication, relationships, and quality of care. Barriers included lack of resources, ineffective communication, and work values, which hinder ethical encounters. Nevertheless, moral sensitivity, genuine interest in resident engagement, and collaborative practices facilitated ethical encounters and are thus central to person-centred care. Uniquely, assistant nurses must be aware of their responsibility for performing their tasks in response to residents' vulnerability. We therefore suggest that moral deliberation over issues of communication, compassion, decision-making, and behavior, with particular consideration for the care relationship. To further improve the quality of care, organisations must provide resources for the building of relationships, as well as time for assistant nurses to recover after long shifts. Additional research is warranted, including implementation of ethically grounded palliative care.

BACKGROUND: Nursing homes (NHs) are populated by the frailest older people who have multiple physical or mental conditions and palliative care needs that may convey the violation of dignity. Although dignity is a commonly used concept and a core value of end-of-life care, it is assumed to be complex, ambiguous, and multivalent. Thus, the aim of this study was to explore aspects of dignity in older persons' everyday lives in a NH.

DESIGN: A focused ethnographic study design.

METHODS: Data consisted of 170 h of fieldwork, including observations (n = 39) with residents (n = 19) and assistant nurses (n = 22) in a Swedish NH. Interviews were undertaken with residents several times (in total, n = 35, mean 70 min/resident). To study dignity and dignity-related concerns, we used the Chochinov model of dignity to direct the deductive analysis.

RESULTS: The study showed that residents suffered from illness-related concerns that inhibited their possibilities to live a dignified life at the NH. Their failing bodies were the most significant threat to their dignity, as loss of abilities was constantly progressing. Together with a fear of becoming more dependent, this caused feelings of agony, loneliness, and meaninglessness. The most dignity-conserving repertoire came from within themselves. Their self-knowledge had provided them with tools to distinguish what was still possible from what they just had to accept. Socially, the residents' dignity depended on assistant nurses' routines and behaviour. Their dignity was violated by long waiting times, lack of integrity in care, deteriorating routines, and also by distanced and sometimes harsh encounters with assistant nurses. Because the residents cherished autonomy and self-determination, while still needing much help, these circumstances placed them in a vulnerable situation.

CONCLUSIONS: According to residents' narratives, important dignity-conserving abilities came from within themselves. Dignity-conserving interventions did occur, such as emphatic listening and bodily care, performed in respect for residents' preferences. However, no strategies for future crises or preparing for death were observed. To protect residents' dignity, NHs must apply a palliative care approach to provide holistic care that comprises attention to personal, bodily, social, spiritual, and psychological needs to increase well-being and prevent suffering.

Most older persons moving to a nursing home need to receive assisted bodily care, which means being in a position of vulnerability. However, few studies have explicitly focused on the meanings of receiving assisted bodily care from the older persons' perspective. This study aimed to elucidate meanings of receiving assisted bodily care, as narrated by older persons living in a nursing home. Twelve men and women, aged 80 or older, living in a Swedish nursing home, participated in the study. Data were generated by narrative interviews and analysed with a phenomenological-hermeneutical method. The regional ethics committee approved the study. In the analysis, one main theme emerged: 'Assenting to exposedness'. This theme comprised five themes, 'To have hope in hopelessness', 'To relinquish one's body into others' hands', 'To be between power and powerlessness', 'To oscillate between one's own responsibility and demands', 'To be in an ongoing interaction', and ten subthemes. In conclusion, receiving assisted bodily care means to be exposed, but not passively. Rather, it means to be self-determinant for as long as possible, to perceive the body as lived. When the body must be relinquished to others, it might be objectified, leading to care-suffering. To avoid this, the older persons use a certain competence, acquired through life, to decide when to take action or when to assent. However, this is but one of the several possible interpretations, which may be considered a limitation.

Introduction: Most older people living in nursing homes need R-ABC (assistance while dressing, undressing, eating, maintaining personal hygiene and while being transferred). This conveys to be helped with things that most people prefer to do in private, turning the older person’s body into an area, accessible to others in ways that would be unacceptable in other contexts.

Aim: The aim of the study was to elucidate meanings of receiving assisted bodily care, as narrated by older persons living in a nursing home.

Method: The study used a lifeworld design, focusing upon how the older persons experienced their world. Narrative interviews with 12 older persons generated 28 interviews.The transcribed interviews were analyzed by use of a phenomenological hermeneutical method, inspired by the philosophy of Ricoeur.

Results: The main theme ’Assenting to exposedness’ means to be exposed to others’ glances, touch and benevolence in an organisation that limits the conditions under which one lives. The overall meaning is to be exposed. Before that, one can do nothing but assent. The theme comprised five themes.

To have hope in hopelessness

Means to recognise remaining bodily assets and receive help to practice in order to increase self-determination, while simultaneously being aware that the life journey is nearing its end.

To relinquish one’s body into others’ hands

Means pleasure when experienced as soft, calm, warm, skilled and caring touch while talking about other things, which mutes the care needs. It means suffering when your wishes are neglected and the body is treated ’like a package’.

To be between power and powerlessness

Means to be able, to preserve self-determination by keeping trying to manage on one’s own. It means powerlessness when being without say, or feeling abandoned while waiting.

To oscillate between one’s own responsibility and demands

Means to judge situations and assent to circumstances predicted by others, but it also means uttering complaints about shortages in R-ABC, caused by organisational economic priorities.

To be in an ongoing interaction

Means having an equal and mutual fellowship with ANs, tinged by a joviality and closeness that normalises otherwise embarrassing situations. On the other hand, it means loneliness and alienation when R-ABC is percieved mechanical, not attending to personal wishes about the delivery of assisted bodily care.

Conclusions: The meaning of R-ABC is to be exposed, but not passively. Rather, it means to be self-determinant for as long as possible, to perceive the body as lived and avoid objectification. Further, to take on responsibility for judging the ANs work-load before asking for help.

Background: Dying in old age tends to be slow and characterized by frailty and bodily needs. In Sweden a large proportion of deaths occur in nursing homes where bodily care is foremost provided by assistant nurses (ANs) who have high school education. Due to lack of places, admission to a nursing home is seldom granted until the older person has complex care needs, meeting death within a year.

Aim: The aim of the study was to describe ANs experiences of providing bodily care to older persons during the last time of their lives in a nursing home.

Method: The study had a qualitative design. Data was collected by individual interviews with ANs (n=7). The transcribed interviews were analyzed using an inductive qualitative content analysis.

Results: In the analysis one main theme emerged; “Being a companion at a natural pathway towards death”. The ANs perceived dying at old age expected as a natural end to a long life. This meant not to hinder what happened, but to be pliable to bodily signs of gradual deterioration of the older person, using intuition, experience and teamwork. The bodily care strived to relieve oppressive symptoms and increase quality of life. This was made possible by teamwork with a holistic approach meaning that bodily care was not only to care for the body, but the whole person. Thus, ANs also described a wish to bring a sense of security and well-being to the older person by being present, creating an atmosphere of closeness outgoing from a companionship built upon a mutual and familiar relationship. 

Conclusion: ANs strived to supply a bodily care aimed to strengthen the older persons self-image. This goal was closely linked to a person-centred palliative care that highlights self-image as fundamental to health, wellbeing and a good death. This may indicate a need of further education in palliative care in order to strengthen the ANs as professionals but also to develop an evidence-based bodily care.

AIM: The aim of this study was to explore family members' perceptions of assisted bodily care in a nursing home.

BACKGROUND: Many older people living in nursing homes need assisted bodily care, provided by assistant nurses. This means exposedness, as the assistance is often provided under stress, but also brings pleasure. Family members, who may wish to and often benefit from continuing to provide assisted bodily care, are perceived as visitors and are expected to relinquish the assisted bodily care to the assistant nurses.

DESIGN: This study has a qualitative design with a phenomenographic approach.

METHODS: Data were collected through semi-structured interviews (n = 13) with family members of older people who were aged > 80, permanently living in a nursing home, suffering from multimorbidity, and in daily need of assisted bodily care. The data were analysed using a phenomenographic method.

RESULTS: Three categories of description presenting an increasing complexity were identified. The family members perceived that assisted bodily care is built upon a respect for the older person's self-determination, practically supported by assistant nurses, and complemented by family members.

CONCLUSIONS: In the family members' perceptions, assisted bodily care signifies ambiguity, as they find themselves balancing between the older persons' need for self-determination and need for help, and, further, between their trust in the assistant nurses' skills and their own perceived inadequacies in intimate assisted bodily care.

IMPLICATIONS FOR PRACTICE: Policies that address the family members' role in nursing homes are needed. Furthermore, time for collaboration is needed for assistant nurses to inform and explain care decisions, become aware of the family members' perceptions of their situation and learn from them.

Background: Many frail older persons who die in Swedish nursing homes need assisted bodily care. They must surrender their bodies to the authority of assistant nurses, which may affect their autonomy, and dignity of identity. While assistant nurses claim to support older persons’ wishes, older persons claim having exposedness to assistant nurses’ routines. The provider-receiverin congruence revealed here warrants investigation.

Aim: To describe the elements of assisted bodily care, as performed in a nursing home.

Research design: Data were collected through thirty-nine observations of assisted bodily care, analyzed with qualitative content analysis.

Participants and research context: Seventeen older persons and twenty-two assistant nurses from a Swedish nursing home.

Ethical considerations: The research was conducted in line with the Declaration of Helsinki,further approved by the regional ethics committee.

Findings: Findings show, that assisted bodily care consists of assistant nurses’ practical work, performed at a high tempo. Still, assistant nurses attempt to adapt this work to older persons’wishes for self-determination, taking into account their day-to-day state of health. In spite of time pressure and occasional interruptions, there is room for consideration and affection in assisted bodily care.

Discussion: Assistant nurses try to promote older persons’ dignity of identity, but sometimes fail, possibly due to lack of time. On the contrary, they seem to know older persons well enough to adapt assisted bodily care according to their preferences and support self-determination. This indicates that openness to older persons’ life-worlds may be more important than the amount of time available.

Conclusions: Nursing home contexts might benefit from adopting a person-centered palliative care perspective, highlighting the value of relationships and shared decision-making. If so, older persons and assisted nurses could prepare agreement on practices and goals in assisted bodily care beforehand. Such routines may be time-saving and beneficial to all.

BACKGROUND: Worldwide, older persons lack access to palliative care. In Sweden, many older persons die in nursing homes where care is provided foremost by assistant nurses. Due to a lack of beds, admission is seldom granted until the older persons have complex care needs and are already in a palliative phase when they move in.

OBJECTIVE: To describe assistant nurses' perspectives of providing care to older persons at the end of life in a nursing home.

RESEARCH DESIGN: Data were collected in semi-structured individual interviews and analyzed with inductive qualitative content analysis. Participants and research context: Seven assistant nurses from a nursing home in Sweden were randomly selected. Ethical consideration: The research was approved by the local ethics committee.

RESULTS: Three main categories emerged; "Death a natural part of life"; "The older person's well-being"; and "Care in the moment of death"; and seven sub-categories. The assistant nurses described themselves as knowing the older persons well enough to provide good end-of-life care. This was achieved by making small-talk while providing daily care. Relying on experience-based knowledge, they strove to provide end-of-life care built upon respect and engagement with the ambition to strengthen older persons' dignity, for example, by lowering the tempo of care at the end of life, in spite of organizational restrictions.

DISCUSSION: The assistant nurses offered attentive end-of-life care, focusing upon bodily care. The existential needs of the older persons were not foregrounded.

CONCLUSION: To develop their work, and to promote an ethical foundation for such care, assistant nurses might need support and education to be able to offer a care more in line with the aims of palliative care. Furthermore, the organization of care needs to promote, not impede, the realization of this development.

Background/aims: In Sweden, palliative care, is an interdisciplinary approach including e.g. doctors, nurses, hospital social workers, physiotherapists and occupational therapists, having knowledge about the patient’s physical and medical status. Communication about existential issues as life and death, and meaning, contribute to relieve symptoms for patients and support their next-of-kin. Today, these conversations are not provided on equal terms to all patients in palliative care. Therefore, there is a need for deeper knowledge about healthcare professionals’ experiences of existential conversations with patients and their next-of-kin in palliative care, and investigate their main concerns to initiate and implement these conversations.

Aim: To deepen the understanding of healthcare professionals’ communication strategies and main concerns in conversations with patients having palliative care needs and their next-of kin.

Methods: Design: A qualitative approach using grounded theory method for data collection and analysis with a focus on communication processes in the participants’ natural settings. Seven focus group interviews with assistant and registered nurses, psysiotherapists and occupational therapists were conducted. The analysis is in progress and final results will presented at the conference.

Results: Preliminary results: Professionals’ main concerns involved “Establishing a trusting relationship” which they solved by “Maintaining presence” despite challenges. These challenges affected how they handled their main concern and are represented in the categories “Talking about death” “Capturing wishes and needs” and “Guiding the patient and next-of-kin”.

Conclusions: A theory based on the professional’s main concerns and challenges will be developed when all data have been analyzed.

Bakgrund: Enligt WHO kännetecknas palliativ vård av helhetssyn med mål att möta fysiska, psykiska, sociala liksom religiösa, andliga och existentiella behov. Att möta existentiella behov förbättrar livskvaliteten men forskningen visar att många patienter i palliativ vård har otillräckligt mötta existentiella behov. Det saknas frågeformulär på svenska för att identifiera och möta existentiella behov i palliativ vård.

Syfte: Att utvärdera patienters och personals erfarenheter av att använda en svensk översättning av frågeformuläret H.O.P.E (Hope, Organized Religion, Personal practices, Effects on medical care) vid en palliativ slutenvårdsenhet.

Metod: H.O.P.E översattes från engelska till svenska genom ”double back translation”. Sex patienter, en sjuksköterska, en läkare och en kurator deltog i djupintervjuer om erfarenheter av att använda H.O.P.E i samtal med patienter. Intervjuerna spelades in digitalt, transkriberades och analyserades med hermeneutisk ansats

Resultat: Patienter och personal upplevde att H.O.P.E var applicerbart, uppskattat och relevant att använda vid samtal om religiösa, andliga och existentiella behov. H.O.P.E associerades med känslor av att ”känna sig sedd” och bidrog till att identifiera copingstrategier hos patienterna. I samtalen identifierades och adresserades existentiella frågor som mening, hopp, skuld och ånger som följdes upp vid behov. Modifieringar föreslogs av språk som ibland kändes akademiska. Separering föreslogs av vissa frågor. Aspekter av existentiella behov som hopp/hopplöshet, mening/meningslöshet, skuld och ansvar skulle kunna adresseras ytterligare för att bättre möta en sekulär kontext.

Betydelse: Studiens resultat visade att den svenska versionen av H.O.P.E är användbart, uppskattat och relevant vid samtal med patienter i palliativ vård om religiösa, andliga och existentiella behov. Modifiering av språk, uppdelning i flera frågor och tillägg av fler frågor utifrån en sekulär kontext skulle ytterligare förbättra formuläret. Framtida studier behövs för utveckling och validering av formuläret.

Kliniskt verksamma sjuksköterskor och omvårdnadsforskare har under mer än 30 år tillsammans utvecklat De 6 S:n som stöd för planering, dokumentation och utvärdering av palliativ vård utifrån patientens perspektiv. De 6 S:n vilar på en humanistisk grund, den palliativa vårdens mål och stämmer väl överens med samhälleliga mål och styrdokument för hälso- och sjukvården. De 6 S:n kan ses som ett sätt att kvalitetssäkra vården. Modellen utgår från följande begrepp: 

• Självbild

• Självbestämmande 

• Symtomlindring

• Sociala relationer

• Sammanhang 

• Strategier

I denna tredje upplaga av boken har samtliga kapitel uppdaterats. Självbestämmande- och symtomkapitlen har utvecklats, det senare med kroppslig omvårdnad och det har tillkommit kapitel om De 6 S:n inom äldreomsorg och om användning av dem för ett livslångt lärande.

Boken vänder sig till studerande inom specialistutbildning, magister- eller masterprogram, till studerande på grundnivå och till personal inom olika vårdformer som vill utveckla den palliativa vården.