Bakgrund: Den palliativa vården ska se till hela familjens behov av stöd. Lagen är tydlig vad gäller barns rättigheter när en förälder är sjuk, men syskon som grupp blir ofta förbisedda. Syskon som mist en närstående har ökad risk för ångest och depression, men löper även högre risk för missbruk, och detta kan relateras till hur syskonen upplevde situationen när deras bror eller syster var sjuk. Barn och unga är en särskilt sårbar grupp som behöver extra omsorg i och med en högre risk för komplicerad och långvarig sorg, och sjukvården har ett ansvar i att stötta dessa individer. Genom ökad kunskap om syskons erfarenheter av att leva med en svårt sjuk bror eller syster kan vi konstruera adekvat stöd baserat på deras behov. Syfte: Att beskriva syskons erfarenheter av att leva med en svårt sjuk bror eller syster. Metod: En litteraturöversikt baserad på 13 originalartiklar, insamlade från två databaser, publicerade mellan 2013–2023. En tematisk analys gjordes utifrån Braun och Clarkes analysmodell. Resultat: Tre huvudteman framkom vid sammanställning av resultat: Att hantera sig själv och sina känslor beskriver syskonens utsatthet och känsla av isolering - en känsla av att hamna i skuggan av sin bror eller systers sjukdom, där en stark önskan om att bli sedd, men en ovilja att ta plats framkom, och stöd från omgivningen var uppskattat. Känslan av förståelse beskriver att information och inkludering uppskattas - att de oftast vet om när saker går osagda och att de själva tvingas läsa mellan raderna kring vad de ser och vad som sägs. Det nya normala beskriver förändring i situation och vardag - där familjen blev allt viktigare, men att rollerna inom familjen förändrades, och det ständigt fanns en närvaro av oro kring den sjuka brodern eller systern. Slutsats: Sjuksköterskor och annan vårdpersonal bör känna till och beakta syskons känsloliv och önskningar för att på bästa sätt kunna stötta och hjälpa syskonet genom den svåra tiden. För att nå upp till barnkonventionen, som numera är lag, gäller detta även för sjukvårdspersonal inom vuxenvården, då barn som har palliativa vårdbehov många gånger vårdas inom vuxenkliniker. / Background: Palliative care must take care of the entire family's need for support. The law is clear regarding children's rights when a parent is ill, but siblings as a group are often overlooked. Siblings who have lost a loved one have an increased risk of anxiety and depression, but are also at higher risk of substance abuse, and this can be related to how the sibling experienced the situation when their brother or sister was ill. Children and young people are a particularly vulnerable group that needs extra care due to a higher risk of complicated and prolonged grief, and the healthcare system has a responsibility to support these individuals. Through increased knowledge of siblings' experiences of living with a seriously ill brother or sister, we can construct adequate support for these children based on their needs. Aim: To describe the siblings' experiences of living with a seriously ill brother or sister. Method: A literature review based on 13 original articles, collected from two databases, published between 2013-2023. A thematic analysis was made based on Braun and Clarke's analysis model. Results:Three main themes emerged when compiling results: Dealing with oneself and one's feelings - describes the sibling's vulnerability and sense of isolation, a feeling of being overshadowed by their brother or sister's illness, where a strong desire to be seen, but an unwillingness to take place emerged, and support from the environment was appreciated. The feeling of understanding - describes that information and inclusion are appreciated, that they usually know when things are left unsaid and that they themselves are forced to read between the lines regarding what they see and what is said. The new normal - describes a change in situation and everyday life, where the family became increasingly important, but the roles within the family changed, and there was a constant presence of concern around the sick brother or sister. Conclusion: Nurses and other healthcare personnel should know and consider the sibling's emotional life and wishes in order to best support and help the sibling through the difficult time. In order to meet the Convention on the Rights of the Child, which is now law, this also applies to healthcare staff in adult care, as children who have palliative care needs are often cared for in adult clinics.

Palliative and end-of-life care (PEOLC) involves the use of an interprofessional approach to improve quality of life for patients facing life-threatening illness, and their informal caregivers (e.g. family, other loved ones). Though many patients with life-threatening illness report desires to die at home, people with PEOLC needs continue to die in hospital settings. Given the considerable differences between inpatient and outpatient PEOLC settings, and the potentially increased future need for inpatient PEOLC services, it is critical to explore how patients and caregivers experience and make sense of illness and care in such settings. To contribute to this gap in the literature, I conducted a scoping review on patient and informal caregiver experiences in inpatient specialist palliative care (SPC) settings and semi-structured interviews with patients and caregivers on the Bruyère inpatient SPC unit. I identified three overarching themes from included studies (n=104), including patient and informal caregiver: i) perceptions of care, the interprofessional palliative care team, and the care environment; ii) communication with the interprofessional team; and iii) impacts of illness and care on quality of life. I conducted interviews with three patients and four informal caregivers. Using an inductive thematic analysis approach, I identified three key themes of patient and informal caregiver experiences within the context of the Bruyère inpatient SPC unit: i) the journey of dealing with life-threatening illness; ii) impacts of the COVID-19 pandemic; and iii) attempts to cope and find peace. Based on my findings, improvements are needed to the provision of person-centred care to address patients’ and informal caregivers’ supportive needs. Further work is needed to identify reforms to support improved education and awareness about palliative care to patients, informal caregivers, and the general public.

This study explored social workers’ perceptions of their role in providing palliative care to patients with life-limiting illnesses in six hospitals across Namibia. A qualitative grounded theory approach was use in which in-depth interviews were conduct with twenty (20) social workers. Several key findings are presented: First, the emerging constructivist grounded theory of social workers’ multi-dimensional roles in providing palliative include identities of advocate, assessor, broker, counsellor, educator, facilitator, patient liaison, mediator, discharge planner and manager of in-country referrals. Second, several participants’ uncertainties of what palliative care entails offered insight that they are in need of palliative care education and training. Third, healthcare professionals do not understand the role of the social workers and therefore social workers receive inadequate support from them. Fourth, there is a lack of in-service training and continuous education in palliative care. Fifth, there are inadequate practice opportunities in palliative care for undergraduate social work students. Finally, the well-being of social workers is another concern with limited debriefing opportunities available. Further research needs to be conducted and policy guidelines established to identify ways to improve the field of palliative care social work. In achieving this, formal education and palliative care practice opportunities for social workers need to be established, providing continuing education and establishing a Centre of Excellence on palliative care provision. This study argues that the social work profession is well positioned to draw upon its values, culture and experiences (particularly from their clients) to get involved in creating a constructivist grounded theory of social workers’ roles in providing palliative care. / Sociology / D. Phil. (Sociology)