Research has highlighted that adolescent young carers (AYCs) are in a vulnerable position due to their caring responsibilities being combined with the challenges of adolescence. However, caring among adolescents does not have to be a solely negative experience and positive experiences of caring can co-exist. Identifying those factors that contribute to AYCs' positive or negative caring experiences is important if AYCs are to be offered appropriate support. This cross-sectional survey study examined factors associated with AYCs' positive and negative caring experiences. Pupils aged 15-17 years from schools in 11 Swedish municipalities completed a questionnaire addressing demographic characteristics, care activities and the reported influence of being an AYC on school results, received support, and perceived health, while caring experiences were measured by the Positive and Negative Outcomes of Caring (PANOC-YC20) instrument. Of 3015 participants, 702 (23%) were identified as AYCs. The PANOC-YC20 positive and negative caring experiences subscales were significantly associated with each other (r = 0.16), with the mean score on the positive subscale (M = 10.36) significantly higher than that of the negative subscale (M = 5.18). In a multinomial logistic regression model, AYCs providing higher levels of emotional care and sibling care had both stronger positive and negative caring experiences, with a relatively greater effect on negative experiences. AYCs who had better perceived health had stronger positive experiences, while poorer perceived health was associated with more negative experiences. Finally, AYCs who felt their school results were negatively affected by their caring role had an increased likelihood of experiencing caring negatively. It is important for relevant authorities and professionals to consider that AYCs can experience caring both positively and negatively when developing or providing support, as these experiences will likely be reflected in both their need of support, and in the forms of support that will be most effective for them.

Adolescent young carers (AYCs) face the challenges of adolescence while also having care responsibilities. Caring can negatively affect an adult carer's health, but there is less evidence on how caring affects AYCs, of whom there is little awareness among professionals. The aim of this survey study was to describe the AYCs' characteristics and investigate factors associated with their perceived health. School pupils aged 15-17 from 11 Swedish municipalities completed a questionnaire addressing caring activities, received support and perceived health. Of the 3,015 participants, 702 (23%) were AYCs. Female gender, having a parent with a health-related condition, mental illness in a family or non-family member, and addiction problems in a non-family member were associated with poorer perceived health, while receiving support with caring was associated with better perceived health. Identifying the factors associated with AYCs' perceived health can lead to appropriate support, but there also needs to be better representation of AYCs in policy.

Alla barn är anhöriga och deras anhörigskap har betydelse för deras uppväxt från allra första börjantill vuxenblivande och på lång sikt livet som vuxna. I barns anhörigskap finns det också utsatthet.Såväl hälso- och sjukvårdslagen som socialtjänstlagen och barnkonventionen lyfter dessa barnsbehov av stöd. De svårigheter som drabbar föräldrar, syskon och barnets andra omsorgspersonerdrabbar även barnen. Linnéuniversitetet och Nationellt kompetenscentrum anhöriga (Nka) har iuppdrag av Socialstyrelsen att sammanställa och sprida kunskap inom området ”Barn som anhöriga”.Som en del i det uppdraget har en andra antologi avseende barn som anhöriga publicerats. Dennaantologi visar på den omfattande utveckling av kunskap, metoder och verktyg avseende stöd tillbarn som är anhöriga som skett, sedan den första antologin publicerades 2015.Antologin vänder sig till politiker, beslutsfattare och verksamhetsutvecklare, personal sommöter anhöriga barn och deras föräldrar, till studerande på sjuksköterske- läkar-, socionom- ochlärarprogrammet och andra relevanta professionsutbildningar. Antologin vill också nå idéburnaorganisationer och enskilda personer som söker kunskap om barns livsvillkor som anhöriga ochunga omsorgsgivare

Purpose: A long-term evaluation of The Caregiver Pathway, a model to follow up family caregivers on Post-intensive Care Symptoms among Family (PICS-F).

Methods: A single-center non-blinded randomized controlled trial including 196 family caregivers to critically ill patients randomized to intervention (n = 101) or control group (n = 95). The Caregiver Pathway intervention consists of: (1) a digital assessment followed by a conversation with a nurse in the first days at the ICU, (2) a supportive card when leaving the ICU, (3) an offer to receive a phone call following patient transfer to a step-down unit, and (4) a follow-up conversation within 3 months after discharge. Outcome measures were collected at 6 and 12 months, including symptoms of post-traumatic stress disorder (PTSD), anxiety, depression, Health-related Quality of Life (HRQoL), hope, and self-efficacy.

Results: The Caregiver Pathway was associated with a significant effect for symptoms of PTSD after 6 months compared with controls, mean IES-R score: 25.8 [95% CI 21.9-29.7] versus 30.9 [95% CI 26.7-35.0], p = 0.009, and a trend toward an effect after 12 months: IES-R score: 25.0 [95% CI 21.3-28.7] versus 28.4 [95% CI 24.1-32.7], p = 0.057. Subgroup analyses at 12 months showed a significant intervention effect among family caregivers of patients who survived compared to controls for PTSD, IES-R score: 19.8 [95% CI 15.3-24.2] versus 29.1 [95% CI 23.5-34.6], p = 0.001, and anxiety, HADS-A score: 4.3 [95% CI 3.1-5.4] versus 6.8 [95% CI 5.2-8.4], p = 0.003.

Conclusions: The Caregiver Pathway has the potential to reduce the symptoms of PICS-F, especially among family caregivers whose patient has survived.

Informal carers in paid work are known as working carers (WKCs). This combination of care and work is particular to them, and their support needs may differ from other informal carers. This exploratory study describes the caregiving-related factors associated with experiencing caregiving as demanding and a decreased ability to work in WKCs. The Swedish National Carer Survey was conducted in a stratified random sample (N = 30,009) of the population (≥18 years) between October 2018 and January 2019. Of 11,168 respondents, 818 (7.32%) met the study criteria for WKCs, i.e. they provide informal care to another person on a regular basis, and they work full time. Almost half (49.3%) of WKCs report experiencing caregiving as demanding, while 40.4% indicated that their ability to work had been reduced due to providing informal care. Two ordinal logistic regression models were developed, one each for caregiving is demanding and ability to work is decreased. Psychological stress and financial problems caused by caregiving increased the odds of both experiencing caregiving as demanding and having one’s ability to work decrease, while finding caregiving satisfying decreased the odds of both. Further research is needed to establish how caregiving-related factors affect WKCs in both their care and working roles.

Mellan fem och tio procent av alla barn i Europa är unga omsorgsgivare, vilket innebär att de ger vård, hjälp eller stöd till någon närstående med ett hälsorelaterat tillstånd. I det internationella, EU-finansierade projektet Psychological support for promoting mental health and well-being among adolescent young carers in Europe (ME-WE) stod just dessa barn i fokus. Det var det första, storskaliga projektet med syfte att främja hälsa och stärka motståndskraft hos unga omsorgsgivare 15–17 år iEuropa. Projektet bestod av tre delar: (1) systematisera kunskap om unga omsorgs-givare, (2) utveckla och testa en förebyggande intervention tillsammans med ungaomsorgsgivare och yrkesverksamma, samt (3) sprida projektets resultat. ME-WE-projektet startade i januari 2018 och avlutades i juni 2021. För att säkerställa att unga omsorgsgivare i olika livssituationer inkluderades, genomfördes projektet i sex länder med varierande nivåer av medvetenhet och stöd: Italien, Nederländerna, Schweiz, Slovenien, Storbritannien och Sverige. Projektet koordinerades av Linnéuniversitetet. Relaterat till det övergripande målet att främja unga omsorgsgivares hälsa, var ambitionen att möjliggöra landsöverskridande jämförelser och öka medvetenheten bland beslutsfattare, hälso- och sjukvård, socialtjänst, skolor, ideell sektor, ungdomarna själva och andra relevanta aktörer. Genom projektets olika delar uppnåddes denna målsättning. Ett flertal publikationer, såväl vetenskapliga som populärvetenskapliga, har publicerats med resultat från projektet. Bland annat genomfördes den första kartläggningen av situationen för unga omsorgsgivare i åldrarna 15–17 år i Europa, som nu är publicerad i en internationell tidskrift. Vidare har analyser av bland annat policys, lagar och skyddsnät genomförts och bidragit till ny kunskap. En central del i projektet var utvecklingen av en stödintervention, ME-WE-modellen, bestående av gruppträffar och en app för unga omsorgsgivare. Även om projektet avslutades 2021, har arbetet med ME-WE fortsatt. I Sverige arbetar Nationellt kompetenscentrum anhöriga (Nka) och Nka:s forskargrupp vid Linnéuniversitetet aktivt med att sprida och implementera ME-WE-modellen. Samtidigt fortsätter olika projektresultat att publiceras och presenteras på konferenser och andra evenemang, såväl nationellt som internationellt. I detta kapitel ges en sammanfattning av ME-WE-projektets olika delar och resultat, samt en redogörelse för hur Nka och Nka:s forskargrupp vid Linnéuniversitetet har fortsatt arbetet efter projekttidens slut. Kapitlet avslutas med reflektioner och rekommendationer om hur unga omsorgsgivare kan uppmärksammas, samt vilket fortsatt arbete som krävs för att förbättra deras livsvillkor.

OBJECTIVES: Explore short-term effects of “The Caregiver Pathway,” an intervention for family caregiver follow-up, on Post-Intensive Care Syndrome symptoms among families (PICS-F).

DESIGN: A randomized controlled trial.

SETTING: A medical ICU at a Norwegian University Hospital.

PARTICIPANTS: One hundred ninety-six family caregivers of critically ill patients randomized to an intervention (n = 101) or control group (n = 95).

INTERVENTIONS: “The Caregiver Pathway” four-step model offers individual and structured follow-up, including: 1) mapping family caregivers’ needs and concerns with an assessment tool followed by a conversation with an ICU nurse within the first days at the ICU, 2) a supportive card when leaving the ICU, 3) offer for the family caregivers to receive a phone call after ICU patient discharge, and 4) a follow-up conversation within 3 months.

MEASUREMENTS AND MAIN RESULTS: Data were collected at baseline and after 3 months and analyzed using linear regression. No significant effects were detected when comparing all participants completing 3-month outcome measurements (n = 144). A subgroups analysis stratified on patient survival, however, showed statistically significant effect for family caregivers of patients surviving the ICU stay receiving the intervention compared with controls. Caregivers of surviving patients reported improved symptoms related to post-traumatic stress disorder, measured by Impact of Event Scale-Revised (B = –8.2 [95% CI, –14.2 to –2.2]; p = 0.008), anxiety (B = –2.2 [95% CI, –4.0 to –0.5]; p = 0.014), and depression (B = –1.5 [95% CI, –2.9 to –0.1]; p = 0.035); measured by the Hospital Anxiety and Depression Scale, subscore physical functioning in health-related quality of life (B = 9.7 [95% CI, 0.3–19.0]; p = 0.043); measured by Short Form 12-Item Health Survey; and hope (B = 2.4 [95% CI, 0.4–4.3]; p = 0.017) and measured by the Herth Hope Index. At 3-month, the model did not appear to improve the outcomes for family caregivers of nonsurviving patients.

CONCLUSIONS: “The Caregiver Pathway” intervention was associated with reduced symptoms of PICS-F in family caregivers of surviving ICU patients compared with controls.

Background: Informal caregiving is a crucial-albeit often invisible-part of the support system that enables older people with chronic diseases, disability, or age-related conditions to live in the community. However, providing informal care can affect caregivers' lives.Aims: To explore 1) the level of care intensity among older caregivers, 2) the relationship between the intensity of caregiving and the negative experiences reported by caregivers, and 3) the variations in unmet support needs depending on the intensity of caregiving.Methods: Between May and September 2023, we conducted a national representative survey to map informal caregivers in Sweden. A total of 25,776 older adults aged _= 65 years were sampled. Marginal probabilities were calculated to obtain results adjusted for age, sex, and level of education.Results: A total of 15,129 people aged _= 65 years responded to the survey (58.7%), of which 2157 were informal caregivers (14.3%). During a typical week, 68.6% of caregivers provided 1-10 h of informal care, 14.6% provided 11-29 h, and 16.8% provided at least 30 h of care. Women (63.1%) and caregivers aged _= 75 years (64.1%) were overrepresented in the group providing high-intensity informal care. A higher intensity of care was related to reporting more negative experiences and worse health, as well as to experiencing more unmet support needs.Conclusions: While most older informal caregivers reported low-intensity engagement and overall good satisfaction with their situation, a non-negligible fraction provides high-intensity help and has unmet needs that should be addressed by targeted interventions rather than one-size-fits-all policies.

This article examines local politicians' assumptions and perceptions regarding welfare technology for older people and their carers. Carers were discursively constructed as merely part of the older person's social sphere, in stark contrast to the realities of the caring situations facing many carers. Older people who remain in their homes, maintaining a healthy and active lifestyle, were discursively constructed as ideal citizens. We argue that such a prevailing discourse leads to the risk of older people with extensive care needs becoming sidelined. Further, it leaves little room to consider carers' needs and preferences for support.