Dataset Information

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.

ABSTRACT:

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=.

SUBMITTER: Olesen LK

PROVIDER: S-EPMC10858669 | biostudies-literature | 2024 Jan-Dec

REPOSITORIES: biostudies-literature

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Publications

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.

Olesen Lene Klem LK la Cour Karen K Nimmon Laura L With Heidi H Handberg Charlotte C

Advances in rehabilitation science and practice 20240101

<h4>Purpose</h4>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.<h4>Materials and methods</h4>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 po ...[more]

PMID: 38343431

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Project description:BackgroundAmyotrophic 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.MethodsA 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.ResultsWithin 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.ConclusionsThe 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 registrationRetrospectively registered on November 20th, 2020. ID no. NCT04638608 .

Project description:BackgroundSeveral studies have characterized the experiences of family members caring for patients undergoing chemotherapy; however, information about the experiences of older spousal caregivers with intensive caregiving burdens is unclear. Recently, more older patients have been diagnosed with cancer due to the aging population worldwide. Therefore, this study evaluated the patterns in the experiences of older spousal caregivers of patients undergoing palliative chemotherapy for advanced cancer.MethodsQualitative research using semi-structured interviews was used in this study involving 10 older spousal caregivers of patients undergoing palliative chemotherapy at a hospital providing advanced cancer care in Japan. The data obtained were analyzed qualitatively and inductively using thematic analysis by Braun and Clarke.ResultsFour themes were identified from the narratives of the participants in this study. The first theme was "getting used to living with the disease," indicating that the older spouses gradually became accustomed to living with the patient through continued caregiving. The second theme was "deepening view of life and death," indicating that the older spouses' views of life and death were deepened by being confronted with patients' quality of life until death. The third theme was "anxious about the future," indicating the fear regarding the patient's progressive diseases and anxiety pertaining to continuing care for the patient while dealing with their health problems. The final theme was "desire for a better rest of life," indicating that the couple felt their bond was strengthened through caregiving and wishes to live well for the rest of their lives.ConclusionsThe patterns in the experience of older spousal caregivers caring for patients undergoing palliative chemotherapy indicated an aspect of rebuilding their lives as they became accustomed to caregiving, while strengthening their marital bond. The caregiving process involved a mix of emotions, including anxiety about the spousal caregiver's health problems worsening. However, the caregivers recognized the value of their remaining time. Therefore, they had deep concern for the patient's comfort, concealing their feelings so that the patient would feel comfortable. This study can contribute to understanding the challenges faced and support needed by older spousal caregivers.

Project description:Background and objectiveIn amyotrophic lateral sclerosis (ALS), progressive weakness significantly limits the ability to exercise. However, measurements of the impaired exercise function and their practical value to assess disease progression in ALS are scarce. Cardiopulmonary exercise testing (CPET) is a non-invasive accurate method used to comprehensively quantify exercise physiology in a variety of diseases. This study aimed to evaluate the clinical value of CPET and to explore its association with disease severity and prognosis prediction in ALS.MethodsA total of 319 participants were enrolled in this 3-year prospective study. After strict quality control, 109 patients with ALS and 150 age- and sex-matched healthy controls were included with comprehensive clinical assessment and follow-ups. The incremental ramp protocol for symptom-limited CPET was applied in both groups. The exercise physiology during peak effort exercise was systematically measured, including the overall aerobic capacity of exercise (VO2 peak) and the respective capacity of the exercise-involved organs [cardiac response (heart rate peak-HR peak), ventilatory efficiency (VE/VCO2 slope), breathing economy (VE/VO2 peak), and other relevant parameters]. Disease severity and progression were evaluated using recognized scales. Survival was monitored with regular follow-ups every 6 months.ResultsDecreased exercise capacity (VO2 peak < 16 ml/kg/min) occurred more frequently in patients with ALS than in controls (44.95% vs. 9.33%, p < 0.01). In patients with ALS, the average VO2 peak (16.16 ± 5.43 ml/kg/min) and HR peak [135 (112-153) bpm] were significantly lower (p < 0.01) than in controls [22.26 ± 7.09 ml/kg/min; 148 (135-164) bpm], but the VE/VCO2 slope was significantly higher [28.05 (25.03-32.16) vs. 26.72 (24.37-29.58); p = 0.03]. In patients with ALS, the VO2 peak and HR peak were significantly correlated with disease severity and progression scores (p < 0.05). Survival analyses revealed the VO2 peak and HR peak as protective indicators while the VE/VO2 peak as a detrimental indicator for the prognostic prediction in ALS (HR = 0.839, p = 0.001; HR = 0.967, p < 0.001; HR = 1.137, p = 0.028, respectively).ConclusionOur prospective study quantified the significantly decreased exercise capacity in ALS through non-invasive CPET. The impaired VO2 peak and HR peak closely correlated with disease severity and independently predicted a worse prognosis. Our findings identified the clinical value of CPET as an objective indicator of disease progression in ALS.

Project description:Aims and objectivesTo explore reflections of family caregivers and health professionals regarding the challenges involved in caring for persons with amyotrophic lateral sclerosis and cognitive and/or behavioral impairments (PALS/CIs).BackgroundFamily caregivers of PALS/CIs are highly burdened and at great risk of psychological sequela. Professionals working with these families can be negatively affected on their well-being and are at risk of burnout.DesignThe design was a qualitative interview study.MethodsOne focus group and 10 individual semi-structured interviews were conducted with seven family caregivers and nine professionals after the death of a PALS/CIs. The analysis was guided by the interpretive description methodology and the theory of sense of coherence. This study adheres to the COREQ guidelines and the ICMJE recommendations.ResultsThe family caregivers' challenges regarding coping with everyday needs related to the sick person were associated with 'Accepting that nothing else matters', 'Adjusting to new roles while balancing', and 'Realizing different values in relationships'; whereas the professionals' challenges were related to 'Collaboration a balancing act', 'Working in a home of sorrow', and 'Coordinating threads to tie'.ConclusionFamily caregivers found coping with the complexity of the diseases a challenge, and their everyday life needed constant adjustment to new roles, coping with inappropriate behavior, and navigating through the progression of the diseases of their sick relatives while collaborating with numerous professionals. The professionals struggled with coordinating and collaborating with the families and with other colleagues due to the severeness and complexity of diseases.Relevance to clinical practiceFindings point to the importance of relationships for caregivers and professionals and a need to provide support through an online palliative rehabilitation program that encompass coping strategies in relation to the diseases.Trial registration detailsId no. NCT04638608.

Project description:IntroductionMany patients with amyotrophic lateral sclerosis (ALS) receive palliative care (PC) very late or not at all. The impact of PC on patients with ALS and caregivers has not been quantified. Study goals included (1) measuring the impact of early PC on quality of life and mood of patients/caregivers and (2) describing patient/caregiver satisfaction with PC.MethodsThe study was a non-randomized, prospective feasibility study of patients with ALS being treated at The Ottawa Hospital ALS Clinic and their caregivers. Exclusion criteria were age < 18 years, inability to complete questionnaires, and prior receipt of PC. The ALS Specific Quality of Life-Revised (ALSSQOL-R) questionnaire (patients only) and Hospital Anxiety and Depression Scale (HADS) were completed at regular intervals for up to 2 years. Patients accepting a PC consultation completed a post-PC satisfaction survey. Primary outcome measures included ALSSQOL-R and HADS scores compared before and after PC consultation, and between groups receiving and not receiving a PC consultation. Secondary outcome measures included responses on the post-PC satisfaction survey (1 = strongly disagree, 5 = strongly agree).Results39 patients with ALS (age 66 ± 10 years, median time from diagnosis = 6 months) and 22 caregivers were enrolled. 32 patients had a PC consultation (30 were virtual). Patients and caregivers agreed with statements that the PC consult was helpful (mean ± SD = 4.54 ± 0.60, range = 3-5) and they would recommend PC to others with ALS (4.59 ± 0.59, range = 3-5). Participants disagreed with statements that the consult would have been better later in disease course (1.87 ± 0.80, range = 1-4) and that it took too much time/energy (1.44 ± 0.85, range = 1-4). Average ALSSQOL-R scores worsened significantly over time. HADS and ALSSQOL-R scores did not significantly differ between groups receiving and not receiving PC.ConclusionPatients with ALS and their caregivers found virtual PC consultations beneficial irrespective of disease duration or severity. Offering routine PC to all patients with ALS is feasible and should be considered as part of standard care.Clinical trial registrationhttps://clinicaltrials.gov/ct2/show/NCT04257760, identifier NCT04257760.

Dataset Information

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

Materials and methods

Results

Conclusion

Clinical trial registration

Publications

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.

Similar Datasets

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