Introduction: Allogeneic stem cell transplantation (allo-HCT) involves a long trajectory with high risk of complications. In person-centred care (PCC), patients’ needs, resources and the care relationship are central to the care process. Healthcare professionals’ (HCPs) ratings of PCC have not previously been investigated in this context.

Objectives: The aim of this study was to investigate healthcare professionals’ ratings and views of person-centred care in allo-HCT care, and associations with individual characteristics and targeted PCC education.

Design: Cross-sectional study, employing quantitative and qualitative methods.

Methods: 85 HCPs at two Swedish allo-HCT centres participated (80% women; mean age: 44 years, range: 23-72 years). A survey was conducted using the PCC Assessment Tool (P-CAT), containing 13 items, a total scale (min 13-max 65) and two subscales (I: min 8-max 40; II: min 5-max 25). Additionally, HCPs’ written responses to four study-specific questions about PCC were collected.

Results: The mean for P-CAT total scale was 45.31, (subscale I: 28.41; subscale II: 16.90). Higher ratings of PCC were reported for assessment of patients’ needs, discussion about how to provide PCC and patients’ care, while time to provide PCC, the care environment and how the organization prevents providing PCC were rated lower. Higher age and targeted PCC education were associated with higher PCC ratings. HCPs described PCC as the patient being seen as a capable individual with their own resources, with PCC increasing patient and family involvement—giving higher satisfaction and tailored care for patients. However, HCPs reported time as a barrier for PCC.

Conclusion: HCPs’ ratings of PCC in this context are high regarding discussing and assessing patients’ needs, but there is room for improvement regarding organizational and environmental aspects. Targeted PCC education increases the level of PCC. HCPs’ views of PCC partly reflect the foundations of PCC—patient’s narrative, capability and involvement.

This study investigated the impact of a national palliative care policy introduced in 2013. The hypothesis was that end-of-life and palliative care policy shape healthcare services, which in turn influence service utilisation and ultimately place of death for people dying from cancer. The aim was to identify longitudinal trends in place of death for people with cancer in Sweden. A population-level longitudinal trend in place of death study was performed, based on register data of all adults aged 18 or above with a cancer diagnosis as underlying cause of death in Sweden between 2013-2019. Data were retrieved from registers at the Swedish National Board of Health and Welfare and Statistics Sweden. In addition to a more descriptive overview of place of death (hospital, home, nursing home, and other places), linear regression models were used to analyse trends in place of death and associated socio-demographic factors, and healthcare services and utilisation. Dying in hospital was most common (48.7%), followed by nursing home (25.6%) and own home (23.5%), and differed according to sex, age, marital status, type of cancer, healthcare regions, and utilising specialised palliative care services at death or not. From 2013 to 2019 the total number of home deaths increased from 21.8% to 24.7%, whereas hospital deaths decreased from 49.2% to 47.1%. For people residing in their own home, there was a downward trend for dying in hospital, while no trend was detected for people residing in nursing homes. The identified trend had cross-regional variations and inconsistencies. In conclusion, the hypothesis was not confirmed. The results point to inequity in palliative cancer care, and need for national governance strategies and improved integration of palliative care in national healthcare structures.

Background: The inclusion of palliative care in policy has been encouraged internationally, and gradually implemented, including in Sweden. Care should be driven by policy; hence, examining how palliative care is included in national policy documents is paramount.

Objectives: This study aimed to examine how palliative care is included in national disease-specific policy documents for adults with chronic conditions, cancer and non-cancer, with potential palliative care needs.

Design: Document analysis.

Methods: A document analysis of Swedish policy documents for different disease-specific groups with severe chronic conditions, cancer and non-cancer, was performed. In total, 96 documents were analysed.

Results: How palliative care was included in the policy documents varied from mentioning the term without explanation to detailed discussion regarding palliative care practice. Such discussion encompassed several conceptualisations of palliative care: defined through authorities' definitions; as care of dying persons; integrated with disease-specific care and treatment; limited to disease-specific medical treatments or based on detail regarding certain key elements of palliative care such as specialised palliative care and end-of-life conversations.

Conclusion: There may be large variations in how palliative care is conceptualised in national disease-specific policy documents, as disclosed by this analysis of the Swedish case. Limiting palliative care to disease-specific medical treatments (most commonly palliative oncological treatments) or the care of dying persons limits its scope in ways contrary to current evidence supporting early integrated palliative care. The lack of palliative care recommendations adapted for each specific diagnosis indicates a gap in policy. To promote equal access to palliative care regardless of patients' diseases or medical conditions, the importance of how palliative care is included in national policy documents needs to be further acknowledged and discussed - with palliative care consistently included in such documents.

Studies addressing patients’ experiences of person-centered care (PCC) in the context of allogeneic hematopoietic stem cell transplantation (allo-HSCT) are scarce; hence, this study aimed to explore patients’ experiences of PCC, and its associations with individual characteristics and health-related quality of life, in the context of allogeneic stem cell transplantation. It is a cross-sectional survey study, in patients who had undergone an allo-HSCT at one center in Sweden. The PCC instrument for outpatient care in rheumatology (PCCoc/rheum) was used. Descriptive and analytical statistics were employed. The study had 126 participants, evenly distributed males and females, 18–79 years old (>60% were 50–69 years old), and most were (>70%) married or cohabiting. The sum score for all items on PCCoc/rheum ranged from 20 to 72 (higher score = higher degree of PCC), with a mean value of 62.67 (SD: 9.863). Most participants (87–99%) agreed with the level of person-centeredness for 22 of the 24 items. Of the participants, 83.3% agreed that they had undisturbed conversations, that their problems had been taken seriously (79.0%), that they had an opportunity to tell their story (77.8%), and collaboration with the nurse was good (77.6%). A sizeable proportion disagreed that the care environment was welcoming (11.9%), family members’ involvement (13.7%), and the possibility to influence the care (15.5%). The fulfillment of PCC was rated as high, but the results indicate that there is room for improvement regarding the possibility of influencing the care and family members’ involvement.

Objectives: The aim was: (1) to investigate preferred place for end-of-life care and death for bereaved family members who had recently lost a person with advanced illness and (2) to investigate associations between bereaved family members’ preferences and individual characteristics, health-related quality of life, as well as associations with their perception of the quality of care that the ill person had received, the ill person’s preferred place of death and involvement in decision-making about care.

Methods: A cross-sectional survey with bereaved family members, employing descriptive statistics and multinominal logistic regression analyses.

Results: Of the 485 participants, 70.7% were women, 36.1% were ≥70 years old, 34.5% were partners and 51.8% were children of the deceased. Of the bereaved family members, 52% preferred home for place of end-of-life care and 43% for place of death. A higher likelihood of preferring inpatient palliative care was associated with being female and having higher education, whereas a lower likelihood of preferring a nursing home for the place of care and death was associated with higher secondary or higher education. Partners were more likely to prefer hospital for place of care and nursing home for place of death.

Conclusions: Home was the most preferred place for end-of-life care and death. Bereaved people’s experiences of end-of-life care may impact their preferences, especially if they had a close relationship, such as a partner who had a higher preference for nursing home and hospital care. Conversations about preferences for the place of care and death considering previous experience are encouraged.

Background: Research shows that undocumented migrants have difficulties in accessing healthcare. Act 2013:407 came into force in 2013 and entitled undocumented migrants to healthcare that cannot be deferred. To date, studies about undocumented migrants’ access to care in Sweden and the impact of Act 2013:407 are sparse. Hence, the aim of this study was to describe professionals’ experiences of access to healthcare for undocumented migrants in Sweden and the impact of Act 2013:407.

Methods: A qualitative design with semi-structured interviews was employed. Nine interviews were carried out in 2015 with nurses at two NGO healthcare centres for undocumented migrants – and an additional seven interviews in 2022 with staff at an NGO healthcare centre for undocumented migrants and personnel at a regional health and medical care administration. Interpretive description was used for the analyses.

Ethical considerations: Permission to carry out the study was obtained from managers at the participating NGOs and the regional health and medical care administration. Participants received verbal and written information about the study, and informed consent was obtained from all participants.

Findings: Six categories emerged from the analysis: Changes since the Act was introduced, General problems with healthcare access, Care for undocumented migrants – politics and social economy, Lack of knowledge, ‘Healthcare that cannot be deferred’ and Being an undocumented migrant.

Conclusion: Undocumented migrants’ social needs are as great as their needs for healthcare. Healthcare staff are burdened with healthcare cost considerations which affect their judgement of care provision and prioritization. Healthcare staff attitudes towards undocumented migrants affect their access to healthcare. Undocumented migrants in need of healthcare are especially vulnerable due to their legal status, being ill and the fear of being reported and deported. To assure undocumented migrants’ access to healthcare and maintain healthcare ethics, the only possible solution is to provide healthcare based on needs.

This thesis is in the subject of palliative care within the research field ‘The individual in the Welfare society’. The overall aim was to investigate bereaved family members’ experiences of support and care during the last three months of life for people with advanced illness. It encompasses four studies, in study I theVOICES (SF) (Views of Informal Carers – Evaluation of Services (Short Form))questionnaire was validated, and in studies II-IV a survey design was employed using VOICES (SF). The survey sample consisted of 485 bereaved family members (20-90 years old, 70.7% women) of people who had died in one of four hospitals, in two Swedish healthcare regions, between August 2016 and April 2017. VOICES (SF) was found feasible for use in a Swedish context in study I,however, the construct of some parts in the questionnaire was found not to be optimal when used in studies II-IV. Further development and validation is, therefore, recommended. The care place/care service was central for family members’ experiences of care and support. The importance of that the ill persons received care according to their needs was stressed, but the delivery of the care -with respect, dignity and empathy - was equally important. Most of the family members were satisfied with the care; however, about a fifth were not, indicating a need for improvement. The type of care, diagnosis, length of illness, educational attainment, and the relationship between the deceased person and the family member, influenced the experiences of care. This confirms that there are potential inequalities in care at the end of life. End-of-life communication and the support given to family members was not experienced as optimal. Family members expressed the importance of healthcare staff providing them with clear information, their own difficulties in recognising imminent death, and the value of a follow-up conversation with a healthcare professional who was present at the time of death. This thesis project has provided novel and important knowledge about the content and quality of care during the last few months of life, for all groups with potential palliative care needs, hence contributing to the discourse concerning quality of care at the end of life and placing care at the end of life on the agenda of the Swedish welfare society.

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

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

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

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