International consensus on occupational therapy interventions for people with palliative care needs: A European Association for Palliative Care Group Concept Mapping study.

BACKGROUND: While evidence shows that occupational therapists can play a key role in the care of people with palliative care needs, more knowledge about effective occupational therapy interventions for this group is needed. AIM: To identify, organise and prioritise intervention components considered to be effective within occupational therapy for people with palliative care needs from the perspective of occupational therapy clinicians, managers and researchers. DESIGN: Group Concept Mapping utilising a mixed methods participatory approach. Using a focus prompt, participants brainstormed, sorted, labelled and rated generated statements about effective occupational therapy intervention components. Multidimensional scaling analysis and cluster analysis were conducted. SETTING/PARTICIPANTS: Snowball recruitment was used to recruit participants. Participants included occupational therapists worldwide who were able to read and write in English and were working as clinicians, managers and/or researchers with occupational therapy interventions for people with palliative care needs. RESULTS: Seventy-two occupational therapists from 15 countries participated in the study representing Asia (n = 3, 20%), Europe (n = 8, 53%), Oceania (n = 2, 13%) and North America (n = 2, 13%). A total of 117 statements were identified and organised into five clusters: (1) being client-centred, (2) promoting occupational engagement to optimise quality of life, (3) involving the social and relational environment, (4) enabling occupations and (5) facilitating occupational adaptation. CONCLUSIONS: Five clusters of core occupational therapy intervention components were considered to be effective when supporting people with palliative care needs. Research should use this knowledge to inform future occupational therapy interventions for this group of people.

The Danish landscape of providing support for caregivers of people with potentially life-threatening disease: A cross-sectional study among representatives of health services in Danish municipalities and hospitals.

AIMS: (a) To investigate support for caregivers of people diagnosed with stroke, cancer, chronic obstructive pulmonary disease (COPD), dementia, or heart disease provided across healthcare settings in Denmark; (b) to assess differences in caregiver support across diagnoses and settings. METHODS: A cross-sectional nationwide survey among professionals representing healthcare settings at municipalities (n = 479) and hospital wards and outpatient clinics (n = 425). The survey assessed identification of caregivers and support initiatives. RESULTS: The response rate was 81% for municipalities and 49% for hospitals. Identification of caregivers was frequent in dementia care (81% and 100%) and less frequent in COPD care (58% and 64%) in municipalities and hospitals, respectively. Caregiver support differed significantly across diagnoses within municipalities (p = 0.009) and hospitals (p < 0.001). Systematic identification of vulnerable caregivers was <25% for all diagnoses except dementia. The most common support initiatives involving caregivers were primarily aimed at the ill person and included guidance about the disease and consequences for everyday life and lifestyle changes. Caregivers were least involved in support initiatives addressing physical training, work retention, sexuality, or cohabitation. CONCLUSIONS: Disparities and significant differences across diagnoses exist in the identification of caregivers and the provision of support initiatives. Support initiatives involving caregivers primarily targeted patients. Future studies should investigate how caregivers' needs can be met across different diagnoses and healthcare settings and investigate potential changes in caregivers' needs during disease trajectories. In clinical practice, identification of vulnerable caregivers should be a major focus, and disease-specific clinical guidelines may be required to ensure sufficient support for caregivers.

Rehabilitation interventions for young adult cancer survivors: A scoping review.

OBJECTIVE: To map existing research concerning rehabilitation interventions for young adult cancer survivors (YACS) that address at least one factor from the biopsychosocial health model. DESIGN: Scoping review. DATA SOURCES: Searches were performed in EMBASE, MEDLINE, PsycINFO, CINAHL and Cochrane in January 2022 and updated in March 2023, and grey literature between February and April 2022. METHODS: The review followed Joanna Briggs Institute's methodology for scoping reviews. Quantitative, qualitative and mixed methods studies evaluating interventions for YACS of any cancer who had completed primary treatment and were between 18 and 39 years old at diagnosis were included. Two authors independently screened studies for eligibility, and standardised forms were used for data extraction. Descriptive statistics, narrative summaries and thematic analysis were used to analyse the data. RESULTS: The search revealed 5706 records, of which 70 were full-text screened. The 20 included studies represented a heterogeneous group of 444 young adults with different cancer types, mean age above 25, and an overrepresentation of females. Most studies were feasibility and pilot studies. The 20 studies consisted of 14 unique interventions focusing primarily on one dimension of the biopsychosocial health model like biological or psychological factors. In the 14 interventions, the most frequent intervention element was peer-to-peer support (n = 12). The interventions were often delivered online (n = 9), lasting 3-12 months (n = 8). A wide variety of theories, providers and outcome measures were used. CONCLUSION: The results show that current research on multicomponent, biopsychosocial and age-specific rehabilitation for YACS remains at an early stage.

Identification of socially vulnerable cancer patients - development of a register-based index (rSVI).

BACKGROUND: Social vulnerability is a complex construct which is beyond relying on single measures. If socially vulnerable patients should be identified, we need a composite measure capturing the patient's overall circumstances. This study presents the development of a social vulnerability index (rSVI) for cancer patients based on administrative data from population-based registers. METHODS: All patients, who died from cancer within 5 years after the cancer diagnosis during 2013-2018 (n = 44,187), were identified and divided in four subcohorts according to survival; index cohort surviving 3-5 years (n = 3044 surviving 3-5 years), cohort 1 (n = 27,170 surviving < 1 year), cohort 2 (n = 9450 surviving 1-2 years), and cohort 3 (n = 4523 surviving 2-3 years). Variables from ten registries on health and social issues were linked to each individual patient. Variables of interest were weighted to construct the rSVI using the index-cohort. rSVI was subsequently tested on the three other cohorts for validation. RESULTS: The rSVI included weighted values for marital status, ethnicity, education, income, unemployment, psychiatric comorbidity, and somatic comorbidity. The validity of the rSVI was supported by the expected trend in proportions of vulnerable patients when applied on the other cohorts. Single social measures appeared insufficient in identification of vulnerable patients when compared with the rSVI. CONCLUSION: The rSVI provides a tool for identification of socially vulnerable cancer patients using administrative data. The index requires further validation in other patient groups and is tested against other measures of vulnerability. Future perspectives are to use the rSVI as predictor of advanced cancer patients' use of healthcare services.

Home-based training technology for persons with dementia: a qualitative study of barriers and facilitators for mobility-based training at home.

BACKGROUND: Physical training is increasingly used in rehabilitation for older people with dementia and several studies have documented positive results. Currently, welfare nations promote motion-based technology (MBT) at home to replace group training in various rehabilitation interventions. Research on the use of MBT by people with dementia is sparse. Therefore, this study explores how people with mild dementia and their relatives experience home-based MBT training in an intervention facilitated by a Danish municipality. METHODS: The study is part of a feasibility study and builds on participant observation and interviews with people with dementia (n = 4), their relatives (n = 4), and health care workers (n = 3) engaged in the project. RESULTS: Participants compared MBT training to group training and found that MBT was not a satisfactory replacement for group training. Some participants used and enjoyed MBT daily while others were challenged by the technology, the placement of the device, or motivation to independently complete the training program. CONCLUSION: MBT is possibly best considered as a supplement to group training, suitable for individuals able to use it in daily life.

Assistive devices among people living at home with advanced cancer: Use, non-use and who have unmet needs for assistive devices?

OBJECTIVE: To investigate which assistive devices people with advanced cancer have and whether they are in use. In addition, to explore the characteristics of people with advanced cancer who have unmet needs for assistive devices. METHODS: This descriptive cross-sectional study used data from a randomised controlled trial evaluating efficacy of an occupational therapy-based intervention. Participants were 237 people with advanced cancer. Data were collected by means of instruments about demography, functioning and assistive devices. RESULTS: The most frequent assistive devices possessed by the participants were as follows: (1) small aids for dressing (47%), (2) Pillow for positioning (40%) and (3) electrically operated adjustable bed (39%). The prevalence of assistive devices was 92% (95% confidence interval [CI]: 88%-95%) with 14.2% non-use, largest for trolley tables (50%). In all, 27.4% of the participants were found to have unmet needs for assistive devices. These participants had similar characteristics to the other participants except from lower activity of daily living (ADL) ability (p values = <0.001). CONCLUSION: The assistive devices possessed by the participants were primarily for positioning and resting, and most were in use. More than a fourth of the participants had unmet needs for assistive devices and were characterised by lower ADL ability.

Users' perspective on rehabilitation interventions for young adult cancer survivors: A group concept mapping study.

OBJECTIVE: We aim to identify and prioritise rehabilitation interventions to strengthen participation in everyday life for young adult cancer survivors (YACS) between 18 and 39 years, involving the perspectives of YACS and relevant stakeholders. METHODS: A group concept mapping study was conducted in Denmark from 2019 to 2020. Online, participants generated and sorted ideas followed by rating their importance. Multidimensional scaling followed by hierarchical cluster analyses were applied to generate a cluster rating map of the prioritised interventions, which participants validated at a face-to-face meeting. Finally, a concluding conceptual model of prioritised rehabilitation intervention for YACS was developed. RESULTS: The study involved 25 YACS, three family members and 31 professionals working with YACS. The conceptual model included 149 ideas classified into eight intervention components created by the participants: (1) Treatment and possibilities within the social and healthcare system, (2) Rights and Finance, (3) Education and Work, (4) Psychological problems, (5) Body and Everyday Life, (6) Peer-to-peer, (7) Sexuality and Relationships and (8) Family and Friends. All components were rated equally important, whereby 17 ideas across the eight components were rated very important. CONCLUSION: This study indicates that rehabilitation of YACS should be composed of eight equally important intervention components requiring an interdisciplinary approach.

Differences in functioning between young adults with cancer and older age groups: A cross-sectional study.

OBJECTIVE: This study aimed to explore whether young adults with cancer have different functioning compared to older age groups with cancer. METHODS: This study is a cross-sectional study including 654 adults (≥18 years) with cancer. Exposure was age groups categorised as (1) young adults (n = 121) = 18-39 years; (2) middle-aged adults (n = 406) = 40-64 years; and (3) older people (n = 127) = ≥65 years. Outcomes were physical, role, social and cognitive functioning. Analyses consisted of linear regression models. RESULTS: Middle-aged adults had a statistically significant worse physical functioning compared to young adults (-3.90: [95% CI: -6.84; -0.95]). The older age group also had a statistically significant worse physical functioning compared to young adults (-7.63: [95% CI: -11.29; -3.96]). Young adults had statistically significant lower role functioning (-7.11: [95% CI: -1.13; -13.08]) and cognitive functioning (-13.82: [95% CI: -7.35; -20.29]) compared to the older age group. There was no statistically significant difference in social functioning between the age groups. CONCLUSION: Young adults with cancer seem to have other functioning problems compared with higher age groups. These findings support current research regarding the need to develop age-specific and appropriate rehabilitation services for young adults with cancer.

Feasibility of a randomized controlled trial of a proprioceptive and tactile vest intervention for children with challenges integrating and processing sensory information.

BACKGROUND: Children with challenges integrating and processing sensory information can have difficulties participating in play and learning activities. One way to support participation is to offer sensory stimulation, such as proprioceptive and tactile stimulation provided by wearing a sensory-stimulating vest. The aim of this study was to investigate the feasibility of the key procedures of a planned full-scale randomized controlled trial (RCT) of a proprioceptive and tactile stimulation vest for children aged 6-12 years who have challenges integrating and processing sensory information. The study focused on the feasibility of the recruitment and information processes, the relevance of the study materials, the usefulness of diaries completed by parents, and use of the following outcome measures: Test of Everyday Attention-Children (TEACh), registration of off-task behaviour, and pulse rate. METHODS: Ten schoolchildren aged 6-12 years (mean 8.4) who had challenges integrating and processing sensory information and sensory-seeking behaviours (based on their Short Sensory Profile scores) participated in the study. Study feasibility was assessed using data from interviews with the participating children, their parents and teachers, and psychologists from the municipal Educational Psychological Counselling Departments. RESULTS: Recruitment and introductory materials were found to be relevant and non-problematic, while the outcome measurements, diaries, and pulse measurements did not work well, and the tool for registering off-task behaviours needed to be revised. The results indicated that an outcome measure relating to the children's subjective experiences and closer involvement of teachers in the study could be beneficial. CONCLUSION: The aim of the study was to investigate the feasibility of the planned methodology for a full-scale RCT of a proprioceptive and tactile stimulating vests for children with challenges integrating and processing sensory information. We found that a partial redesign of the study is needed before a full-scale RCT is conducted and that this should include outcome measures on the children's subjective experiences with using the vest.

A cross-sectional evaluation of acceptability of an online palliative rehabilitation program for family caregivers of people with amyotrophic lateral sclerosis and cognitive and behavioral impairments.

BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a progressive fatal neurodegenerative disease. Around half of the population with ALS develop cognitive and/or behavioral impairment. Behavioral changes in persons with ALS are perceived as the strongest predictor of psychosocial distress among family caregivers. Interventions aiming to support family caregivers are emphasized as important in relation to reducing psychological distress among family caregivers. Successful healthcare interventions depend on the participants' acceptance of the intervention. Therefore, this study aims to evaluate the acceptability of a new online palliative rehabilitation blended learning program (EMBRACE) for family caregivers of people with ALS and cognitive and/or behavioral impairments. METHODS: A qualitative cross-sectional design using the theoretical framework of acceptability to evaluate acceptance of the intervention based on data collected through individual in-depth interviews and participant observations. Individual interviews were conducted in 10 participants post-intervention and participant observations were recorded during virtual group meetings among 12 participants. A deductive retrospective analysis was used to code both datasets in relation to the seven constructs of the theoretical framework of acceptability: affective attitude, burden, ethicality, intervention coherence, opportunity costs, perceived effectiveness, and self-efficacy. The theory of sense of coherence by Antonovsky informed the development and design of the intervention and interviews. The study adheres to the COREQ (consolidated criteria for reporting qualitative research) guidelines. RESULTS: Within the seven constructs we found that affective attitude addressed the meaning and importance of peer support and focused on the participants' needs and challenges. Burden referred to technology challenges, time pressure, and frequent interruptions during meetings. Ethicality concerned transparency about personal experiences and the exposure of the affected relative. Intervention coherence referred to a shared destiny among participants when they shared stories. Opportunity costs primary concerned work-related costs. Perceived effectiveness referred to the usefulness and relevance of peer support and the meetings that brought up new ideas on how to approach current and future challenges. Self-efficacy involved the motivation to learn more about ALS and ways to cope that were accommodated by the convenient online format. CONCLUSIONS: The findings showed that the participants favored peer support and the videos that reduced feelings of loneliness and frustration but also confronted them and provided knowledge on future challenges. Further research should explore the benefits of the program and the meaning of online peer support among caregivers of people with ALS and cognitive and/or behavioral impairments. TRIAL REGISTRATION: Retrospectively registered on November 20th, 2020. ID no. NCT04638608 .

Rehabilitation and palliative care for socioeconomically disadvantaged patients with advanced cancer: a scoping review.

BACKGROUND: Rehabilitation and palliative care may play an important role in addressing the problems and needs perceived by socioeconomically disadvantaged patients with advanced cancer. However, no study has synthesized existing research on rehabilitation and palliative care for socioeconomically disadvantaged patients with advanced cancer. The study aimed to map existing research of rehabilitation and palliative care for patients with advanced cancer who are socioeconomically disadvantaged. MATERIAL AND METHODS: A scoping review was conducted in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). A systematic literature search was performed in CINAHL, PubMed and EMBASE. Two reviewers independently assessed abstracts and full-text articles for eligibility and performed data extraction. Both qualitative and quantitative studies published between 2010 and 2019 were included if they addressed rehabilitation or palliative care for socioeconomically disadvantaged (adults ≥18 years) patients with advanced cancer. Socioeconomic disadvantage is defined by socioeconomic position (income, educational level and occupational status). RESULTS: In total, 11 studies were included in this scoping review (138,152 patients and 45 healthcare providers) of which 10 were quantitative studies and 1 was a qualitative study. All included studies investigated the use of and preferences for palliative care, and none focused on rehabilitation. Two studies explored health professionals' perspectives on the delivery of palliative care. CONCLUSION: Existing research within this research field is sparse. Future research should focus more on how best to reach and support socioeconomically disadvantaged people with advanced cancer in community-based rehabilitation and palliative care.

Process evaluation of the Cancer Home-Life Intervention: What can we learn from it for future intervention studies?

BACKGROUND: The Cancer Home-Life Intervention showed no significant effects, and examination of the processes affecting or inhibiting outcomes is relevant. AIM: To evaluate the Cancer Home-Life Intervention for its processes of implementation, mechanisms of impact and contextual factors. DESIGN: Process evaluation conducted alongside the randomised controlled trial, using quantitative and qualitative methods (ClinicalTrials.gov NCT02356627). The Cancer Home-Life Intervention is a tailored, occupational therapy-based programme. SETTING/PARTICIPANTS: This study took place in participants' homes and at hospital. A total of 113 home-dwelling adults (⩾18 years) with advanced cancer who had received the Cancer Home-Life Intervention were included, together with five intervention-therapists. RESULTS: All 113 participants (100%) received a first home visit; 32 participants (26%) received a second visit; and 4 participants (3%) received a third visit. Median number of delivered intervention components were 3 (interquartile range: 2; 4). Identified barriers for effect included unclear decision process for intervention dosage; participants' low expectations; participants' lack of energy; and insufficient time to adopt new strategies. The trial design constituted a barrier as the intervention could only be provided within a specific short period of time and not when relevant. Intervention components working to solve practical everyday problems, enhance enjoyment and increase a sense of safety were perceived as useful. CONCLUSION: Future interventions can benefit from inclusion criteria closely related to the intervention focus and clear procedures for when to continue, follow-up and terminate intervention. Decisions about dose and timing may benefit from learning theory by taking into account the time and practice needed to acquire new skills.

Everyday activities when living at home with advanced cancer: A cross-sectional study.

OBJECTIVE: This study aimed at exploring everyday activities of people with advanced cancer living at home: which everyday activities they perform; perceived and observed quality of performance of self-care and household activities; which activities they would like to be able to perform; and determine any gender differences. METHODS: Outpatients (n = 164) with advanced cancer were recruited from Danish oncology units. Data were based on medical hospital records, standardised questionnaires, a 1-day diary, standardised interviews and standardised observations. All data were subject to descriptive and statistical analyses. RESULTS: More than 95% of the study sample was classified in ECOG performance status 1 and 2. Compared to population-based norms, the participants reported lower levels of global health and quality of life, as well as lower physical and role functioning. Across gender, participants spent the majority of the day involved in self-care and leisure activities. They reported to perform self-care independently without risk, although 60% reported problems with mobility. While heavy household activities were reported as most problematic, participants prioritised support to engage in more active leisure and social activities. CONCLUSION: People with advanced cancer experience problems related to performance of and engagement in everyday activities indicating a need for palliative rehabilitation services.

The association between having assistive devices and activities of daily living ability and health-related quality of life: An exploratory cross-sectional study among people with advanced cancer.

OBJECTIVE: To explore whether people with advanced cancer who had assistive devices had higher or lower ADL ability and/or HRQoL than people with advanced cancer who did not have assistive devices. METHODS: A cross-sectional study of 164 participants with advanced cancer. Self-reported ADL ability and HRQoL were assessed using the ADL-Interview and the EORTC QLQ-C30. Data regarding assistive devices were collected using a study-specific questionnaire. Data were analysed using multiple linear regression. The regression coefficients (B) were presented in crude form and adjusted for potential confounding variables (age, gender, cohabiting, receiving help, physical functioning, fatigue and pain). p-Values (p) < 0.05 were considered statistically significant. RESULTS: Having assistive devices was associated with lower ADL ability (B = -0.923, p = <0.0001), but this association was not significant after adjustment where it was found that physical functioning was a confounder positively associated with ADL ability (B = 0.030, p = <0.0001). No significant association was found between having assistive devices and HRQoL. Both fatigue (B = -0.336, p = <0.0001) and pain (B = -0.124, p = 0.010) were negatively associated with HRQoL. CONCLUSION: The participants had the same ADL ability and HRQoL regardless of them having assistive devices. Interventions addressing physical functioning or fatigue and pain might contribute to enhancing ADL ability and HRQoL among people with advanced cancer.

The 'Cancer Home-Life Intervention': A randomised controlled trial evaluating the efficacy of an occupational therapy-based intervention in people with advanced cancer.

BACKGROUND: People with advanced cancer face difficulties with their everyday activities at home that may reduce their health-related quality of life. To address these difficulties, we developed the 'Cancer Home-Life Intervention'. AIM: To evaluate the efficacy of the 'Cancer Home Life-Intervention' compared with usual care with regard to patients' performance of, and participation in, everyday activities, and their health-related quality of life. DESIGN AND INTERVENTION: A randomised controlled trial ( ClinicalTrials.gov NCT02356627). The 'Cancer Home-Life Intervention' is a brief, tailored, occupational therapy-based and adaptive programme for people with advanced cancer targeting the performance of their prioritised everyday activities. SETTING/PARTICIPANTS: Home-living adults diagnosed with advanced cancer experiencing functional limitations were recruited from two Danish hospitals. They were assessed at baseline, and at 6 and 12 weeks of follow-up. The primary outcome was activities of daily living motor ability. Secondary outcomes were activities of daily living process ability, difficulty performing prioritised everyday activities, participation restrictions and health-related quality of life. RESULTS: A total of 242 participants were randomised either to the intervention group ( n = 121) or the control group ( n = 121). No effect was found on the primary outcome (between-group mean change: -0.04 logits (95% confidence interval: -0.23 to 0.15); p = 0.69). Nor was any effect on the secondary outcomes observed. CONCLUSION: In most cases, the 'Cancer Home-Life Intervention' was delivered through only one home visit and one follow-up telephone contact, which not was effective in maintaining or improving participants' everyday activities and health-related quality of life. Future research should pay even more attention to intervention development and feasibility testing.

Storytelling as part of cancer rehabilitation to support cancer patients and their relatives.

Previous research on psychosocial support for cancer-related concerns has primarily focused on either patients or their relatives, although limited research is available on how patients and their relatives can be supported together. The aim of this article is to explore the use of storytelling as a part of a residential cancer rehabilitation intervention for patients together with their relatives, with a specific focus on their management of cancer-related concerns. Ten pairs participated in the intervention and data were generated through ethnographic fieldwork, including participant observations, informal conversations and follow-up interviews conducted one month after completing the intervention. Analysis was performed drawing on narrative theory combined with social practice theory. The results demonstrate that the use of storytelling and metaphors intertwined with other course activities, such as dancing and arts & crafts, provided the patients and their relatives with strategies to manage cancer-related concerns, which they were later able to apply in their everyday lives. The study results may be useful to other professionals in clinical practice for rehabilitation purposes for addressing issues of fear and worry.

Evaluation of a complex intervention to improve activities of daily living of disabled cancer patients: protocol for a randomised controlled study and feasibility of recruitment and intervention.

BACKGROUND: Many cancer patients have problems performing activities of daily living (ADL). A randomised controlled trial was designed to examine the effects of an ADL intervention in addition to standard treatment and care in a hospital setting. The objective of this article was to present the study and to analyse the feasibility of the recruitment process and the intervention. METHODS: Adult disabled cancer patients at Næstved Hospital in Denmark were enrolled between 1 March 2010 and 30 June 2011 and randomised into an ADL intervention or to a control group. The intervention was performed by occupational therapists. The feasibility of the recruitment was analysed with regard to success in achieving the estimated number of participants and identification of barriers, and feasibility of the intervention was based on calculations of patient attendance and patient acceptability. The primary outcome of the randomised controlled trial was patients' health-related quality of life 2 and 8 weeks after baseline. RESULTS: A total of 118 disabled cancer patients were enrolled in the study over a time span of 16 months. Very few meetings between occupational therapist and patient were cancelled. Time spent on the intervention varied considerably, but for the majority of patients, time consumption was between 1-3 hours. CONCLUSIONS: Despite difficulties with recruitment, participation was considered feasible and the intervention was accepted among patients. Missing data in the follow-up period were mostly due to death among participants. Very few participants declined to complete questionnaires during follow-up.

Experiences of an Online Palliative Rehabilitation Programme for Spousal Caregivers of People With Amyotrophic Lateral Sclerosis and Cognitive and/or Behavioural Impairments: A Qualitative Interpretive Study.

Purpose: The purpose of this study was to understand how spousal caregivers of people with amyotrophic lateral sclerosis and cognitive and/or behavioural impairments felt about the EMBRACE intervention. Materials and methods: A qualitative interpretive study, using individual semi-structured interviews pre- and post-participation in a palliative rehabilitation blended learning programme, was applied. In total, 13 spousal caregivers were interviewed pre-intervention and 10 of them post-intervention. Results: Three overarching themes were identified: Striving to Obtain Control in Everyday Life, Peer support Across the Illness Trajectory and The Complexity of Relations. Information provided in targeted videos and sharing experiences with peers in virtual group meetings were beneficial to comprehend, manage and find meaning in everyday challenges related to being a caregiver. Conclusion: The EMBRACE intervention helped spousal caregivers cope with everyday needs and challenges related to being a caregiver. EMBRACE was found to support and strengthen the participants in gaining more control in everyday life, creating a sense of coherence. Through targeted videos and discussions with peers, the participants felt prepared for the illness trajectory of their relative. Peer support promoted resilient functioning and reduced their feelings of loneliness. Clinical trial registration: This study was registered on clinicaltrials.gov under the name: A Complex Intervention Study on a Palliative Rehabilitation Blended Learning Programme to Support Relatives and Health Care Providers of People with ALS and Cognitive Impairments in Coping with Challenges. ID no. NCT04638608. URL: https://clinicaltrials.gov/ct2/results?cond=&term=NCT04638608&cntry=&state=&city=&dist=.

Developing community based rehabilitation for cancer survivors: organizing for coordination and coherence in practice.

BACKGROUND: Increasing incidences of cancer combined with prolonged survival have raised the need for developing community based rehabilitation. The objectives of the analysis were to describe and interpret the key issues related to coordination and coherence of community-based cancer rehabilitation in Denmark and to provide insights relevant for other contexts. METHODS: Twenty-seven rehabilitation managers across 15 municipalities in Denmark comprised the sample. The study was designed with a combination of data collection methods including questionnaires, individual interviews, and focus groups. A Grounded Theory approach was used to analyze the data. RESULTS: A lack of shared cultures among health care providers and systems of delivery was a primary barrier to collaboration which was essential for establishing coordination of care. Formal multidisciplinary steering committees, team-based organization, and informal relationships were fundamental for developing coordination and coherence. CONCLUSIONS: Coordination and coherence in community-based rehabilitation relies on increased collaboration, which may best be optimized by use of shared frameworks within and across systems. Results highlight the challenges faced in practical implementation of community rehabilitation and point to possible strategies for its enhancement.