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=.

Teachers' and Parents' Assessment of Challenges in Children Exhibiting Sensory Seeking Behavior and Possible Effects of the Use of Ball Vests: A Pre-Post Study.

Children with dysfunction in sensory processing (DSP) may experience challenges, which might affect their participation in activities and potentially also their further development. This study examined the challenges of children with DSP who exhibit sensory seeking behavior, the differences in these challenges between boys and girls, and the possible effects of their use of ball vests. The challenges of 70 pupils (aged 6-12 years) exhibiting sensory seeking behavior were assessed by their parents (n = 66) and teachers (n = 60) by surveys containing items from the 'Strengths and Difficulties Questionnaire' (SDQ) and the 'Five to Fifteen' (FTF) questionnaire. Differences in the SDQ/FTF scores between boys and girls were explored using chi-square analysis. The potential effects of the ball vest were assessed using a study-specific follow-up survey. Linear mixed model regression analysis was used to examine associations between the extent of use of the vest and the assessed effects. The pupils were assessed for challenges that interfered with their learning (62%), forming friendships (51.7%), and the classroom environment (56.9%). After three weeks, the parents found that some pupils had improved regarding attention (39%), body perception (34%), and hyperactivity and impulsivity (33%). The teachers reported that 30% of the pupils had improved their coping skills in learning.

The use and timing of rehabilitation and palliative care to cancer patients, and the influence of social vulnerability - a population-based study.

OBJECTIVES: To identify and investigate different cohorts of cancer patients' use of physical rehabilitation and specialised palliative care (SPC) services, focusing on patients with incurable cancer and the impact of social vulnerability. METHODS: The sample originated from patients diagnosed during 2013-2018 and alive 1 January 2015. Use of physical rehabilitation and/or SPC units were identified from contacts registered in population-based administrative databases. Competing-risks regression models were applied to investigate disparities with regard to social vulnerability, disease duration, gender and age. RESULTS: A total of 101 268 patients with cancer were included and 60 125 survived longer than 3 years after their diagnosis. Among the 41 143 patients, who died from cancer, 66%, survived less than 1 year, 23% survived from 1 to 2 years and 11% survived from 2 to 3 years. Contacts regarding physical rehabilitation services appeared in the entire cancer trajectory, whereas contacts regarding SPC showed a steep increase as time drew closer to death. The largest disparity was related to disease duration. Socially vulnerable patients had less contact with SPC, while a larger proportion of the socially vulnerable cancer survivors used rehabilitation, compared with the non-vulnerable patients. CONCLUSIONS: This study provides a previously unseen detailed overview of the use of physical rehabilitation and/or SPC among patients with incurable cancer. The services appeared to overlap at a group level in the cancer trajectory, emphasising the importance of awareness with regard to coordination and combination of the services. Disparities between socially vulnerable or non-vulnerable patients were identified.

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.

How a group-based occupational therapy program works in woman with fibromyalgia: A process evaluation of the ADAPT program.

BACKGROUND: The ADAPT Program have improved activities of daily living (ADL) in women with fibromyalgia. To understand the functioning of the program, it is relevant to evaluate how program theory components are linked to outcomes (mechanisms) and how the randomised controlled trial (RCT) context, influenced delivery and outcomes. OBJECTIVE: To evaluate ADAPT in terms of dose, mechanisms of change and contextual factors. MATERIAL/METHODS: Dose was recorded on the n = 21 participants receiving ADAPT in the IMPROvE trial (NCT01352052). A subsample of n = 16 attended one of three 2-hour focusgroups, evaluating mechanisms of change and contextual factors. Interview questions explored participants' interaction with four program components, i.e. how the 'client-centred approach', 'group-based peer-exchange format', 'teaching-learning strategies' and 'long-term program format' triggered mechanisms facilitating/hindering outcomes. Moreover, how randomisation procedures influenced delivery and outcomes. RESULTS: Attending a long-term educational peer-exchange program, in which participants experienced met by a health professional that legitimised difficulties, facilitated participants knowledge, insights and motivation for changing habits. With time and support, participants experienced increased acceptance of their situation and began to implement more effective ways to perform ADL tasks. CONCLUSIONS/SIGNIFICANCE: Results support previous findings of improved ADL ability post-ADAPT and provide initial evidence to support the ADAPT Program theory.

The 'Young Adult Taking Action' programme for young adult cancer survivors: A study protocol for a feasibility study.

BACKGROUND: Young adult cancer survivors (YACS) aged 18-39 report age-specific multifactorial challenges with self-care, leisure, work and education requiring multicomponent rehabilitation intervention. Therefore, the 'Young Adult Taking Action' (YATAC) programme was developed. AIMS/OBJECTIVES: To present a protocol for a feasibility study evaluating the acceptability of the YATAC programme and exploring implementation, mechanisms of impact and outcomes. MATERIAL AND METHODS: A mixed-method feasibility study with a convergent research design will be conducted. The programme is an age-specific, multicomponent, goal-oriented, and peer-based rehabilitation programme delivered by an interdisciplinary staff consisting of nine components: 1) Goal setting, 2) Everyday life, 3) Physical activity, 4) Psychological issues, 5) Work and study, 6) Sexuality and relationship, 7) Rights and finance, 8) Peer-to-peer support and 9) Individual consultation. Quantitative and qualitative data about acceptability, implementation, mechanisms of impact and outcomes will be collected. RESULTS: The results will provide essential knowledge about the programme's acceptability, implementation, mechanisms of impact and outcomes. CONCLUSION AND SIGNIFICANCE: The study will inform adjustment of the programme and will provide knowledge of whether and how to deliver age-specific rehabilitation to YACS.

Social vulnerability among cancer patients and changes in vulnerability during their trajectories - A longitudinal population-based study.

BACKGROUND: Identification of socially vulnerable cancer patients in the health care system is difficult. Only little is known concerning changes in the patients' social circumstances during the trajectory. Such knowledge is valuable regarding the identification of socially vulnerable patients in the health care system. The objective of this study was to use administrative data to identify population-based characteristics of socially vulnerable cancer patients and investigate how social vulnerability changed during the cancer trajectory. METHODOLOGY: A registry-based social vulnerability index (rSVI) was applied to each cancer patient prior to their diagnosis, and used to assess changes in social vulnerability after the diagnosis. RESULTS: A total of 32,497 cancer patients were included. Short-term survivors (n = 13,994) died from cancer from one to three years after the diagnosis, and long-term survivors (n = 18,555) survived at least three years after the diagnosis. 2452 (18 %) short-term survivors and 2563 (14 %) long-term survivors were categorized as socially vulnerable at diagnosis, of these 22 % and 33 % changed category to not socially vulnerable during the first two years after the diagnosis, respectively. For patients changing status of social vulnerability, several social and health-related indicators changed, which is in line with the complexity of the multifactorial social vulnerability. Less than 6 % of the patients categorized as not vulnerable at diagnosis, changed to become vulnerable during the following two years. CONCLUSION: During the cancer trajectory, social vulnerability may change in both directions. Surprisingly, more patients, who were categorized as socially vulnerable when their cancer was diagnosed, changed status to not socially vulnerable during follow-up. Future research should attempt to increase knowledge on identifying cancer patients, who experience deterioration after the diagnosis.

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.

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.

Perceived benefits from peer-support among family caregivers of people with amyotrophic lateral sclerosis and cognitive impairments in a palliative rehabilitation blended online learning programme.

RATIONALE: Family caregivers of persons with amyotrophic lateral sclerosis and cognitive and/or behavioural impairments (PALS/CIs) experience various challenges and needs, including emotional and practical support from peers. Various forms of peer-support have shown different strengths and weaknesses; however, little is known about how family caregivers of PALS/CIs interact with and perceive virtual face-to-face peer-support. AIMS AND OBJECTIVES: The aim of this study was to understand how caregivers of PALS/CIs interact with and perceive virtual face-to-face peer-support in a palliative rehabilitation programme designed to promote targeted palliative rehabilitation initiatives for caregivers of PALS/CIs. METHOD: A qualitative design using participant observations of 17 recorded virtual group-facilitated meetings from two rounds of a 4-month intervention was performed. The Medical Research Council framework, the inductive interpretive description methodology and the theoretical framework of Sense of Coherence guided the study. Nineteen participants, divided into four groups, were included. RESULTS: Three themes emerged: 'Relating my situation to others', 'Making room for forbidden thoughts' and 'Longing for normalcy'. The themes reflected the various ways participants interacted in online group meetings and how the interactions evolved around practical, emotional and forbidden thoughts. Sharing personal and sorrowful concerns and frustrations engendered feelings of trust and a sense of belonging, which empowered the participants to address their genuine wish and longing for normalcy with all the trivialities of which ALS/CIs had robbed them. CONCLUSION: Virtual face-to-face peer-support can enable caregivers of PALS/CIs to share experiences of everyday life challenges that cannot always be shared elsewhere. Being able to relate to and learn from other's experiences alleviated feelings of loneliness, frustration, and concerns and thereby enhanced comprehensibility, manageability and meaningfulness. Online palliative rehabilitation interventions should provide an opportunity for caregivers to meet regularly in interactive group meetings. Familiarization takes time online and is necessary to improve their sense of feeling safe to share their deepest thoughts. Such group interventions, facilitated by trained healthcare professionals, offer a means to support dynamic group interactions and discussion of sensitive topics.

Occupational performance and prioritized problematic everyday occupations among people with advanced cancer living alone versus living with someone.

BACKGROUND: People living at home with advanced cancer wish to maintain and preserve domestic life, but they experience several barriers in their everyday occupations and thereby occupational performance. There is little knowledge of these barriers experienced by people living alone versus people living with someone. OBJECTIVE/AIM: To investigate differences in self-perceived occupational performance and the prioritisation of getting self-reported problematic everyday occupations solved among people with advanced cancer, taking living status into consideration. METHOD: A cross-sectional study using baseline data from an RCT including 174 participants with advanced cancer living at home. Difficulty and priorisation of everyday occupations were assessed using the Individually Prioritised Problem Assessment (IPPA). RESULTS: In total, 731 problematic everyday occupations were reported, mainly related to the categories of housework, self-care and leisure. CONCLUSIONS/SIGNIFICANCE: Overall, no statistically significant difference in self-reported occupational performance was found. However, people living alone perceived statistically significantly more frequently showering/bathing and doing laundry as difficult and therefore important to address. In contrast, people living with someone prioritised social interaction and home maintenance statistically significantly more frequently.

Lack of systematicity in research prioritisation processes - a scoping review of evidence syntheses.

BACKGROUND: A systematically and transparently prepared research priority-setting process within a specific scientific area is essential in order to develop a comprehensive and progressive evidence-based approach that will have a substantial societal impact on the site of interest. On the basis of two consensus workshops, the authors suggest the following methods for all such processes: use of experts, stakeholder involvement, literature review, and ranking. OBJECTIVES: The identification, categorisation, and discussion of methods for preparing a research prioritisation process. METHODS: Eligibility criteria: Evidence synthesis includes original studies presenting a research prioritisation process and which listed the methods used to create a research prioritisation process. Only evidence syntheses related to health research were included. DATA SOURCES: We searched the following electronic databases, without limiting by date or language: MEDLINE Ovid, Embase Ovid, Epistemonikos, and CINAHL EBSCO. CHARTING METHODS: The methods used were mapped and broken down into different elements, and the use of the elements was determined. To support the mapping, (A) all of the elements were collapsed into unique categories, and (B) four essential categories were selected as crucial to a successful research prioritisation process. RESULTS: Twelve evidence syntheses were identified, including 416 original studies. The identification and categorisation of methods used resulted in 13 unique categories of methods used to prepare a research agenda. CONCLUSION: None of the identified categories was used in all of the original studies. Surprisingly, all four of the essential categories were used in only one of the 416 original studies identified. There is seemingly no international consensus on which methods to use when preparing a research prioritisation process. PROTOCOL REGISTRATION: The protocol was registered in Open Science Framework ( https://osf.io/dygz8/ ).

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.

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.

Cancer rehabilitation and palliative care for socially vulnerable patients in Denmark: an exploration of practices and conceptualisations.

Background: Despite a tax-funded, needs-based organisation of the Danish health system, social inequality in cancer rehabilitation and palliative care (PC) has been noted repeatedly. Little is known about how best to improve access and participation in cancer rehabilitation and PC for socio-economically disadvantaged and socially vulnerable patients. Aim: To gather, synthesise and describe practice-orientated development studies presented in Danish-language publications and examine the underpinning conceptualisations of social inequality and vulnerability; explore related views of stakeholders working in the field. Methods: The study comprised a narrative review of Danish-language literature on practice-orientated development studies which address social inequality and vulnerability in cancer rehabilitation and PC and an online stakeholder consultation workshop with Danish professionals and academics working in the field. Results: Two themes characterise the included publications (n = 8): types of interventions; conceptualisations of social inequality and vulnerability; three themes were identified in the workshop data: focus and type of interventions; organisation of cancer care; and vulnerability of the healthcare system. The publications and the workshop participants (n = 12) favoured approaches which provide additional individualised resources throughout the cancer trajectory for this patient group. The terms social inequality and social vulnerability are largely used interchangeably, and associated with low income and no or little education yet qualified with multiple descriptors, which reflect the diverse socio-economic situations professionals encounter in cancer patients and their psychosocial needs. Conclusion: Addressing social inequality and vulnerability in cancer rehabilitation and PC in Denmark entails practical and conceptual challenges. Of importance is individualised support and the integration of rehabilitation and PC into standardised care pathways. To conceive of social vulnerability as a layered, dynamic, relational and contextual concept reflects current practice in identifying the diversity of cancer patients who may benefit from additional support in accessing and participating in rehabilitation and PC.

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 .

A resource-oriented intervention addressing balance in everyday activities and quality of life in people with advanced cancer: protocol for a feasibility study.

BACKGROUND: People with advanced cancer need to balance their resources and energy in order to experience enjoyment and quality of life in the time they have left. A resource-oriented intervention is developed targeting these aspects. The present protocol presents a feasibility study of this resource-oriented intervention in people with advanced cancer. METHODS: A feasibility study with a repeated-measurement design without a control group will be conducted at the research clinic of REHPA, the Danish Knowledge Center for Rehabilitation and Palliative Care. Data will be gathered at baseline, during and after a 5-day residential stay, after 6 weeks, during a 2-day follow-up stay and after 12 weeks. In total, 20-25 home-living adults (≥ 18 years) with advanced cancer reporting needs in everyday life will be recruited. The intervention consists of workshops and engagement in physical and creative everyday activities provided by a multidisciplinary team. Outcome measures are quality of life, physical function and fatigue, which will be assessed using the European Organisation for Research and Treatment of Cancer Quality-of-Life Questionnaire Core-30. Balance in everyday activities will be assessed using the Occupational Balance Questionnaire. Feasibility data will also be collected regarding (1) fidelity, (2) adherence, (3) dose and (4) reach and mechanisms of impact. For exploration of mechanism of impact, participant observations and focus group interviews will be used. DISCUSSION: This study presents a new approach in rehabilitation and palliative care aimed at supporting people with advanced cancer; instead of identification of problems, the present resource-oriented palliative rehabilitation intervention will target people's resources, enhancing balance in everyday activities and underpinning enjoyment and quality of life. The results from the feasibility study can inform ways in which to support the everyday life of people with advanced cancer and thus have potential to improve their quality of life. The long-term perspectives are to evaluate the intervention in terms of effect, process and cost-effectiveness. This will provide evidence to adjust the content of rehabilitation and palliative care for this group of people. TRIAL REGISTRATION: NCT04772690 Name of the registry: Balance, Activity and Quality of Life (BAL) Date of registry: February 26, 2021.