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Background: Although the majority of German patients in a palliative state prefer to die at home, the actual place of death is most often a hospital. Unplanned hospital readmissions (UHA) not only contradict most patients’ preferences but also increase the probability of an aggressive end-of-life treatment. As limited knowledge is available which factors contribute to an UHA, the PRePP-project aims to explore predictors related to informal caregivers (IC) as well as medical and structural factors. - Methods: This prospective, observational, mono-centric study will assess structural and medical factors as well as ICs’ psychological burden throughout seven study visits. Starting in April 2021 it will consecutively include 240 patients and their respective IC if available. Standardized measures concerning ICs’ Quality of Life (WHOQOL-BREF), psychological distress (NCCN-Distress Thermometer), anxiety (GAD-7) and depressiveness (PHQ-9) will be assessed. If participants prefer, assessment via phone, browser-based or paper-based will be conducted. Medical records will provide routinely assessed information concerning patient-related characteristics such as gender, age, duration of hospital stay and medical condition. Nurse-reported data will give information on whether hospitalization and death occurred unexpectedly. Data will be progressed pseudonymized. Multivariable regression models will help to identify predictors of the primary endpoint “unplanned hospital admissions”. - Discussion: The PRePP-project is an important prerequisite for a clinical risk assessment of UHAs. Nevertheless, it faces several methodological challenges: as it is a single center study, representativity of results is limited while social desirability might be increased as the study is partly conducted by the treatment team. Furthermore, we anticipated an underrepresentation of highly burdened participants as they might refrain from participation.

No / The European RHAPSODY project sought to develop and test an online information and support programme for caregivers of individuals diagnosed with young onset dementia. The objectives were to assess user acceptability and satisfaction with the programme and to test outcome measures for a larger effectiveness study. DESIGN: A pilot randomised controlled trial in England, France, and Germany was conducted with 61 caregivers for adults with young onset Alzheimer's disease or frontotemporal degeneration. Evaluations at baseline, week 6, and week 12 assessed user acceptability and satisfaction. Use of the programme was measured from online back-end data. Qualitative feedback on user experiences was collected via semi-structured interviews. Measures of caregiver well-being (self-efficacy, stress, burden, frequency of patient symptoms, and caregiver reactions) were explored for use in a subsequent trial. RESULTS: Participants logged in online on average once a week over a 6-week period, consulting approximately 31% of programme content. Seventy percent of participants described the programme as useful and easy to use. Eighty-five percent expressed intent to use the resource in the future. Reductions in reported levels of stress and caregivers' negative reactions to memory symptoms were observed following use of the programme. CONCLUSIONS: Results indicated that the RHAPSODY programme was acceptable and useful to caregivers. The programme may be complementary to existing services in responding to the specific needs of families affected by young onset dementia. Distribution of the programme is underway in England, France, Germany, and Portugal.

Research suggests that the relationship between caregivers and their infants has a significant effect on development and well-being across the lifespan. There is a significant body of research into psychological interventions which focus on this relationship. However, there is only limited research into the impact of antenatal interventions which aim to promote the caregiver-foetus relationship, thus preventing later difficulties in the caregiver-infant relationship. Findings so far suggest that such interventions could be effective, and recommendations have been made for further studies exploring the effect antenatal interventions on the caregiver-foetus relationship. This pilot study explored the impact of a newly developed psychoeducational intervention entitled “Baby World” on the caregiver-foetal relationship. Seventy-nine females and 26 males who were expecting their first child were recruited from an NHS midwife service in London. They were randomly allocated to experimental or control groups. All participants completed questionnaires measuring antenatal attachment, mental health and childhood experiences of caregiving at baseline. Those in the experimental group then attended the Baby World class. All participants then completed the questionnaires for a second time, and then attended the standard antenatal classes. Following attendance at these classes, participants completed the questionnaires for a third time and gave anonymous responses to qualitative questions. Statistical analyses of the quantitative data indicated that the intervention did not have an impact on antenatal attachment. Results did show that antenatal attachment increased over time, whilst anxiety decreased. A significant correlation was found between recollections of maternal caring and antenatal attachment. Qualitative analysis suggested that the intervention did have an impact on aspects of the relationship. In the qualitative responses, the majority of participants wrote that the class had been a positive experience for them, and that it had increased their confidence about being a caregiver. Many of the responses indicated that the class had positively affected their skills in reflective functioning, caregiver sensitivity and attunement, and changed their perspective on how to interact with their infant. The results add to the literature regarding the impact of antenatal interventions on the caregiver-foetus relationship. Further research is needed to explore the impact of the intervention on the relationship more closely, in particular to understand which aspects of the relationship may be affected. There are several limitations of the study, in particular the small sample size and the limited number of expectant fathers who participated. Reasons for these limitations are discussed.

Bakgrund: Demenssjukdom är vanligt förekommande i samhället och leder till att den drabbade slutligen blir beroende av hjälp från andra. Anhörigvårdare står för en stor del av omvårdnaden men när omvårdnadsbehovet blir ohanterligt, sker ofta en flytt till särskilt boende.  Syfte: Att beskriva anhörigvårdares upplevelser när en person med demenssjukdom, som de vårdat, flyttar från det egna hemmet till ett särskilt boende. Metod: Litteraturöversikt där strukturerade sökningar gjorts i databaserna Cinahl och PsycINFO för att hitta relevanta kvalitativa vetenskapliga artiklar som svarar mot syftet. Analys har gjorts i flera steg, resultatet har slutligen sammanställts och sorterats in i olika huvud- och underrubriker. Resultat: Anhörigvårdare kan uppleva transitionen på olika sätt; känna frihet, sorg, saknad, skuld, skam och lättnadskänsla. Anhörigvårdare känner sig överväldigade av vårdtyngden i hemmet. Beslutet om flytt upplevs underlättas om stöd och stöttning från omgivningen finns. Det framkom att anhörigvårdare kan uppleva bristande kommunikation, information och stöttning från vårdpersonal på särskilt boende. Slutsats: Sjuksköterskan kan genom att stärka och stödja närstående bidra till minskad risk för ohälsa, orsakad av vårdtyngd och psykisk stress. Utifrån detta tydliggörs vikten av att se och uppmärksamma anhörigas upplevelser av transitionen när personen med demens flyttar till särskilt boende. / Background: Dementia is common in society and eventually leads to the person with dementia to become reliant on help from others. Family caregivers account for a large portion of the care, but when the need for care increases, a move to a nursing home is common. Aim: To describe family caregivers experiences when a person with dementia, whom they have cared for, moves to a nursing home. Method: A literature review. Structured searches were done using the databases Cinahl and PsycINFO to find relevant qualitative articles that answer the aim. The analysis was made in several steps, the result was sorted into main- and subcategories. Results: Family caregivers can experience the transition in many different ways; feel freedom, grief, loss, guilt, shame and relief. They feel overwhelmed by the burden of care at home. The decision to move the person with dementia can be eased by support from other people. Family caregivers can experience a lack of communication, information and support from the nursing home staff. Conclusion: The nurse can help decrease the risk of worsening health for the caregiver caused by caregiver burden and stress, by supporting the family caregiver. This shows the importance of acknowledging the family caregivers experiences of the transition when the person with dementia moves to a nursing home.

As a social worker working for the Department of Social Development, the researcher is rendering services to the Polokwane surrounding areas in Ga-maraba village in Limpopo Province. The beneficiaries of these services are mostly Pedi-speaking people under the leadership of Chief Maraba. Ga-maraba area is located approximately 40 km away from Polokwane city. When rendering services to the Pedi families, the researcher has observed that a number of child sexual abuse cases occur, which are not reported due to what Pedi culture validates as being sexual abuse. Most of the children in these cases are being sexually abused both by family members and non-family members, and such incidents are not reported. After these observations, the researcher was triggered to investigate what might be the cause, unfortunately no study has been conducted in this specific geographic area of Ga-maraba. The aim of the research was to explore the perceptions of Pedi-speaking caregivers concerning the disclosure of child sexual abuse in order to gain insight into the possible contributory factors and the knowledge of these caregivers about what constitutes child sexual abuse as well as to empower them to disclose child sexual abuse. Purposive sampling was conducted among the Pedi-speaking caregivers. This research reveals that Pedi culture regards rape as child sexual abuse and the other sexual offences according to criminal law (Sexual Offences and Related Matters Amendment Act 32/2007) are regarded as minor things and taboos. These findings clearly indicate that Pedi-speaking care-givers do not possess adequate knowledge of child sexual abuse. As a result, there is a need for the establishment of proper programmes that address child sexual abuse in the area of Ga-maraba and the areas around Polokwane. The findings also indicate that when such cases arise in the Pedi community, they are not disclosed to the outside world, the families affected prefer to resolve these problems among themselves, and traditional courts intervene if the families disagree. / MSW (Forensic Practice), North-West University, Potchefstroom Campus, 2015

As a social worker working for the Department of Social Development, the researcher is rendering services to the Polokwane surrounding areas in Ga-maraba village in Limpopo Province. The beneficiaries of these services are mostly Pedi-speaking people under the leadership of Chief Maraba. Ga-maraba area is located approximately 40 km away from Polokwane city. When rendering services to the Pedi families, the researcher has observed that a number of child sexual abuse cases occur, which are not reported due to what Pedi culture validates as being sexual abuse. Most of the children in these cases are being sexually abused both by family members and non-family members, and such incidents are not reported. After these observations, the researcher was triggered to investigate what might be the cause, unfortunately no study has been conducted in this specific geographic area of Ga-maraba. The aim of the research was to explore the perceptions of Pedi-speaking caregivers concerning the disclosure of child sexual abuse in order to gain insight into the possible contributory factors and the knowledge of these caregivers about what constitutes child sexual abuse as well as to empower them to disclose child sexual abuse. Purposive sampling was conducted among the Pedi-speaking caregivers. This research reveals that Pedi culture regards rape as child sexual abuse and the other sexual offences according to criminal law (Sexual Offences and Related Matters Amendment Act 32/2007) are regarded as minor things and taboos. These findings clearly indicate that Pedi-speaking care-givers do not possess adequate knowledge of child sexual abuse. As a result, there is a need for the establishment of proper programmes that address child sexual abuse in the area of Ga-maraba and the areas around Polokwane. The findings also indicate that when such cases arise in the Pedi community, they are not disclosed to the outside world, the families affected prefer to resolve these problems among themselves, and traditional courts intervene if the families disagree. / MSW (Forensic Practice), North-West University, Potchefstroom Campus, 2015

Purpose: To test whether a psycho-educational program affects mental wellbeing in persons treated for colorectal cancer and their next-of-kin. Design: A prospective, longitudinal, randomized controlled trial. Setting: Surgical clinic at a university hospital in Sweden. Sample: 105 colorectal cancer patients and 71 next-of-kin were allocated to a psycho­educational program or to standard care. Methods: Mental wellbeing was evaluated with the Mood Adjective Check List and The Hospital Anxiety and Depression Scale at baseline and at 1, 6, and 12 months. The program consisted of seven meetings, including lecture and time for reflection with other patients/next­of-kin. Main Research Variable: Overall mood, activity, calmness, pleasantness, anxiety, and depression. Findings: The psycho-educational program increased overall mood, calmness, and pleasantness among patients after one month but had no effect on activity, anxiety, or depression. The program had no effect on the overall mood, activity, calmness, pleasantness, anxiety, or depression among next-of-kin. Conclusion: The psycho-educational program had a short-term effect on overall patient mood, calmness, and pleasantness but not on next-of-kin. Implications for Nursing: A psycho-educational program including lecture and time for reflection can be used with a colorectal cancer patient population to improve some aspects of their mental wellbeing.

Patient and caregiver education is recognized as a critical component of stroke rehabilitation and physical therapy practice yet the informational needs of stroke survivors and caregivers are largely unmet and optimal educational interventions need to be established. The objective of this dissertation was to develop a theory and model of “Rehabilitation Education for Caregivers and Patients” (RECAP) in the context of physical therapy and stroke rehabilitation, grounded in the experiences and perceptions of stroke survivors, their caregivers, and physical therapists. Qualitative research methods with a novel grounded theory approach were used. Potential constructs of RECAP were identified from existing research. Next, semi-structured interviews were conducted with 13 stroke survivors and 12 caregivers from rural Appalachian Kentucky, a region with high incidence of stroke and lower levels of educational attainment. Lastly, 13 physical therapists, representing inpatient rehabilitation, outpatient, and home health, were recruited and participated in pre-interview reflection activities and interviews. Data analysis involved predetermined and emerging coding and a constant comparative method was employed. Verification strategies included self-reflective memos, analytic memos, peer debriefing, and triangulation. The theory generated from this dissertation is: physical therapists continually assess the educational needs of stroke survivors and caregivers, to participate in dynamic educational interactions that involve the provision of comprehensive content, at a point in time, delivered through diverse teaching methods and skilled communication. This phenomenon is influenced by characteristics of the physical therapist and receiver (stroke survivor/caregiver) and occurs within the context of the physical therapist’s professional responsibility, the multidisciplinary team, a complex healthcare system, and the environmental/socio-cultural context. The RECAP theoretical model depicts the relationships between the core and encompassing constructs of the theory. The RECAP theory and model presents a significant advancement in the study of patient and caregiver education in physical therapy in stroke rehabilitation. This research provides a springboard to inform future research, guide RECAP in stroke physical therapy practice, design optimal educational interventions, develop training tools for entry-level curriculum and practicing clinicians, and to potentially translate to the practice of patient and caregiver education for other rehabilitation professionals and patient populations.

Prostatacancer är en av de mest vanliga cancersjukdomarna globalt sett och den vanligaste cancerformen i Sverige. Om männen när de får diagnosen är i en relation med någon kan även denna person påverkas av detta. Syftet med denna studie var att undersöka dessa partners erfarenhet av att leva med en man med prostatacancer. En litteraturöversikt baserad på kvalitativt material utfördes. Femton artiklar analyserades och åtta kategorier kunde identifieras: rsn, Anhörigvårdare, Information, Stöd, Sexualitet och Intimitet, Team, Kommunikation och Vardagen. Resultatet visade att kvinnor ofta tar på sig rollen som anhörigvårdare och att de visade ett behov av ytterligare information och stöd. Det sexuella samlivet var även något som kvinnorna ansåg påverkades som en följd av impotensen mannen drabbades av efter behandling. Vissa kvinnor beskrev hur de bemötte cancern tillsammans med sin man som en enhet. En bra kommunikation mellan kvinnorna och deras män uppfattades av vissa kvinnor som viktigt. Många kvinnor beskrev hur deras liv förändrades att de använde sig av olika strategier för att klara av vardagen. När kvinnor antar rollen som anhörigvårdare är det viktigt för dem att de från sjukvården får rätt typ av information och stöd i rätt tidpunkt för att för att kunna förbereda sig för och hantera denna roll. Sjukvården behöver därför utveckla riktlinjer så att kvinnornas behov inkluderas i vårdprocesserna kring mannen. / Prostate cancer is one of the most common cancers globally and the most common cancer in Sweden. If the men when diagnosed are in a relationship with someone, this person may be affected by this. The purpose of this study was to examine the partner's experience of living with a man with prostate cancer. A literature review based on qualitative material was carried out. Fifteen articles were analyzed and eight categories were identified: Changed outlook on life, Caregiver, Information, Support, Sexuality and Intimacy, Team, Communication, and Daily Life. The results showed that women often take on the role of caregivers and that they showed a need for additional information and support. According to women, the impotence the men suffered from after treatment had an impact on their sex-life. Although the women prioritized that their husbands were still alive instead of a functional sex-life many felt that their sex-life had been affected in a negative sense. Some women described how they responded to the cancer with her husband as a unit. Good communication between women and their husbands were perceived by some women as important. Many women described how their life changed and that they used various strategies to cope with everyday life. When women assume the role of caregivers it's important for them to have the right kind of information at the right time given to them by health care providers, this in order to be able to prepare for and respond to the role as a caregiver. Health services therefore need to develop guidelines to ensure that the needs of women are included in the care processes of the men.