Table 2 Summary of Included Studies
Authors (year) | Country | Research design | Aim of study | Participants for data collection | Contents | Target for intervention - delivery mode -instructive approach | Average time per session, frequency, duration |
|---|---|---|---|---|---|---|---|
Aoun et al. (2015) [23] | Australia | One group pre-post | To assess the acceptability, feasibility, and effectiveness of dignity therapy to reduce distress in people with MND and their family caregivers | 27 patients (mean age: 64.3; female: 33.3%) 18 caregivers (mean age: 59.9; female:72%; spouse: 100%) | Counseling: Dignity therapy | Patients and caregivers (or only patients) - Individual; in person - Administered by a psychologist | average of 4 visits, average of 2 h per visit |
Averill et al. (2013) [24] | USA | RCT | To examine effects and moderators of disclosure on psychological wellbeing in people with ALS | 48 patients [E: 24, C:24] (mean age: 61.4 [E], 58.8 [C]; female: 37.5% [E], 25.0% [C]) | Behavioral therapy: Expressive disclosure | Patients - Individual; giving assignments - Provided written instructions and telephone follow up | for 20 min a day for three days over a period of one week |
Bentley et al. (2014) [8 | Australia | One group pre-post | To assess the feasibility, acceptability, and potential effectiveness of dignity therapy for family carers of people with MND | 18 caregivers (median age: 61; female: 72.2%; spouse: 100%) | Counseling: Dignity therapy | Patients and caregivers - Individual; in person - Administered by a therapist | Average of 3.75 (assisted by family carers), 4.41 (patients alone) sessions |
Bentley et al. (2014) [25] | Australia | One group pre-post | To assess the feasibility, acceptability, and potential effectiveness of dignity therapy for people with MND | 29 patients (range of age: 32–81; female: 31%; mean ALSFRS: 32.61) | Same as above* | Patients - Individual; in person, one participant with moderate speech impairment completed the intervention using video conferencing and email - Administered by a therapist | average of 4.4 sessions, average of 42 days |
Bilenchi et al. (2022) [18] | Italy | Qualitative analysis | To describe the implementation of a structured psychoeducational intervention in ALS, identifying the needs of both patients and their caregivers | 2 patients and 6 caregivers underwent an interview (5 patients and 13 caregivers joined the sessions) | Education, counseling, social support: psychoeducational intervention | Patients and caregivers - Group; in person - Administered by two psychologists | nine monthly sessions of 1 h and a half / 2 h each |
Cipolletta et al. (2018) [30] | Italy | Qualitative analysis | To identify caregivers' needs, the prominent aspects of their experience, and to understand whether and how mutual support group intervention strategy might help them | 12 caregivers (mean age: 62 [spouse], 41.5 [adult child]; female: 33.3% [spouse], 83.3% [adult child]; spouse: 50%) | Social support: Mutual support group | Caregivers - Group; in person - Coordinated by two facilitators | a total of 10 sessions of an hour and a half each |
De Marchi et al. (2022) [34] | Italy | Quasi-experiment | To test the feasibility, safety, and tolerability of telehealth with a dedicated e-health Chatbot | 46 patients [E: 26, C: 20] (mean age at onset: 57.2 [E], 59.8 [C]; female: 35% [E], 50% [C]; ALSFRS: 35.04 [E], 34.05 [C]) | Education: Chatbot webapp (dietary monitoring and nutritional recommendation) | Patients - Individual; mHealth - Counseling through a chatbot | a total of 6 months. dietary intake was registered twice weekly, adjust monthly type of diet to be proposed |
De Wit et al. (2020) [9] | The Netherlands | RCT | To evaluate a blended (face-to-face and online) psychosocial support program | 148 dyads [E: 74, C: 74] caregivers (mean age: 61.8 [E], 61.3 [C]; female: 64.9% [E], 64.9% [C]) patients (mean age: 62.3 [E], 62.9 [C]; female: 35.1% [E], 36.5% [C]; mean ALSFRS: 31.7 [E], 31.0 [C]) | Education, counseling, psychotherapy, social support: Acceptance and Commitment Therapy | Caregivers - Individual; in-person & online - Guided by a psychologist | A total of 8–12 weeks, 1 face-to-face contact (1 h), 6 online modules (1 h and 30 min per), 1 closing telephone calls (30 min) |
De Wit et al. (2019) [31] | The Netherlands | Qualitative analysis | To gather insight into experiences with different components of a blended (face-to-face and online) psychosocial support program (program evaluation) and to discover what caregivers gained from following the program (mechanisms of impact) | 23 caregivers (mean age: 59.6, female: 65%) | Same as above* | Caregivers - Individual; in-person & online - Guided by a psychologist | A total of 8–12 weeks, 1 face-to-face contact (1 h), 6 online modules (1 h and 30 min per), 1 closing telephone calls (30 min) |
Díaz et al. (2016) [5] | Spain | Quasi-experiment | To evaluate the possible benefits of a psychological intervention based on a combination of CBT and counselling techniques | 54 patients [E: 30, C: 24] (mean age: 60.6 [E], 66.2 [C]; female: 73.3% [E], 66.7% [C]; mean ALSFRS: 17.4 [E], 14.6 [C]) | Education, counseling, behavioral therapy: cognitive behavioral therapy combined with counselling techniques | Patients and caregivers separately - Individual; in-person - Administered by health professionals | four semi-structured sessions, 1 h per session, 15–25 days between each session |
Fateh et al. (2022) [35] | Iran | RCT | To investigate the effect of energy conservation techniques in patients with MND | 28 patients [E: 14, C: 14] (mean age: 49.57 [E], 53.71 [C]; female: 50.0% [E], 50.0% [C]) | Education, behavioral therapy: Energy conservation program | Patients - Not reported - Administered by an occupational therapist | 3 weekly 1-h per session |
García Pérez & Dapueto (2014) [26] | Uruguay | Case study | To describes a psychotherapy intervention in a patient in advanced stages of ALS | 1 patient (age: 66, female) | Counseling: psychotherapy using augmentative and alternative communication | Patient - Individual; in-person - Administered by a psychotherapist | once a week, 1 h per session |
Horne-Thompson & Bolger (2010) [22] | Australia | One group pre-post | To compare the effectiveness of a live music therapy session, recorded music, and silence, in reducing anxiety for patients with ALS/MND | 21 patients (mean age: 61.7; female: 28.6%; mean ALSFRS: 22) | Behavioral therapy: a live music therapy session, recorded music | Patients - Individual; in-person - Administered by a music therapist | 30 min each of the three study interventions: a live music therapy session, a recorded music intervention and a control intervention |
Jikumaru (2011) [27] | Japan | Case study | To test the utility of the Psychotherapeutic Nursing in an advanced stage of the ALS patient | 1 patient (age: mid-fifties, male) | Counseling: psychotherapeutic Nursing | Patient - Individual; in-person - Administered by a psychotherapist-nurse | 29 sessions, once a week, 45–60 min per session |
Kavanaugh et al. (2020) [32] | USA | One group pre-post | To test whether young carer participants in the YCare protocol show improved self-efficacy in care tasks after receiving the training; and whether youth participants can identify self-care goals and behaviors toward the development of self-management as caregivers | 19 caregivers (range of age: 9–19, female: 31.58%, child of a patient: 78.95%) | Education, social support: skills training and support program | Caregivers - Group; in-person - Administered by health professionals | four modules, 50 min per module |
Kleinbub et al. (2015) [28] | Italy | Quasi-experiment | To test the effect of hypnosis-based intervention to a broader ALS group, investigating the longitudinal, long-term effects of intervention on patients and their caregivers, and taking into account the impact on disease progression as well as the influence of individual aspects | 30 patients [E: 15, C: 15] (mean age: 55.3 [E]; female: 53.3% [E]) 15 caregivers [E: 15] (female: 66.7%, spouse: 80.0%) | Psychotherapy: a hypnosis treatment and self-hypnosis training | Patients - Individual; in-person - Administered by a trained operator in Ericksonian hypnosis | 4 weekly sessions, 60-75 min per session |
Kolomeytseva et al. (2022) [36] | Russia | Mixed method | To determine the feasibility of a home-based music therapy protocol as an intervention to support respiratory and bulbar functions in early- and mid-stage ALS | 8 patients (mean age: 58.1; female: 75.0%; range of ALSFRS: 31–42) 6 caregivers (female: 66.7%, spouse: 66.7%) | Behavioral therapy: home-based music therapy | Patients - Individual; in-person - Administered by a music therapist | twice weekly for six weeks |
Madsen et al. (2019) [6] | Denmark | Qualitative analysis | To gain insight into experiences and reflections of persons with ALS and relatives concerning the peer group rehabilitation program “More Life–Less Illness.” | 8 patients (age of 60–69: 50.0%; female: 25.0%) 10 caregivers (female: 90.0%; spouse: 80.0%) | Social support: ‘More life-Less illness’ (peer group rehabilitation) | Patients and caregivers - Group; in-person - Facilitated by a program professional | 6 sessions, monthly, half a day per session |
Marconi et al. (2016) [10] | Italy | Qualitative analysis | To investigate the experience of a meditation training program tailored for people with ALS and their caregivers | 26 patients (mean age: 61.9; mean ALSFRS: 29) 18 caregivers (mean age:57.8) | Psychotherapy: meditation training program | Patients and caregivers - Group; in-person - Conducted by two trainers | 8 sessions, weekly |
Oudman & Baert (2022) [37] | Netherlands | Case study | To describe the positive effects of eye movement desensitization and reprocessing (EMDR) | 1 patient (age: 48, female) | Psychotherapy, behavioral: EMDR and mediative behavioral therapy | Patient - Individual; in-person - Conducted by psychologists | 2 weeks of mediative treatment, 40 min of EMDR session |
Pagnini et al. (2022) [38] | USA | RCT | To explore the impact of an ALS-specific online Langerian mindfulness training program on quality of life of ALS patients | 38 patients [E: 19, C:19] (mean age: 63.9 [E], 62.3 [C]; female: 55.6% [E], 47.4% [C]) 22 caregivers (E:11, C:11) (mean age: 58.1 [E], 62.3 [C]; female: 44.4% [E], 72.7% [C]) | Psychotherapy: an ALS-specific online Langerian mindfulness training program | Patients and caregivers - Individual [dyads or patient or caregiver alone]; online - Facilitated using email | 5 weeks, daily exercises (mostly 2–3 min) |
Palmieri et al. (2012) [39] | Italy | One group pre-post | To investigate the effect of hypnosis-based intervention on psychological and perceived physical wellbeing in patients and the indirect effect on caregivers | 8 patients (mean age: 55; female: 50.0%; mean ALSFRS: 35) 8 caregivers (female: 62.5%, spouse: 87.5%) | Psychotherapy: hypnosis intervention and self-hypnosis training | Patients - Individual; in-person - Administered by a psychologist | four weekly sessions and self-hypnosis at least once everyday |
Palmieri et al. (2021) [39] | Italy | Quasi-experiment | To compare two specific psychological interventions to reduce suffering and improve wellbeing in people with ALS, namely Rogerian supportive counseling and hypnosis-based intervention | 36 patients [E: 21, C1:15, C2: 15 (from previous study)] (mean age: 65.35 [E], 65.8 [C1]; female: 38.1% [E], 20.0% [C1]; mean ALSFRS: 34.48 [E], 38.8 [C1]) | Education, counseling: empathy-based supportive counseling intervention | Patients - Individual; in-person - Administered by a psychologist | four weekly sessions, 60 min per session |
Raglio et al. (2016) [19] | Italy | RCT | To evaluate the possible efficacy of active music therapy mainly in psychological aspects of the disease, in particular, on anxiety, depression, and quality of life | 30 patients [E: 15, C:15] (mean age: 62.9 [E], 65.1 [C1]; female: 53.3% [E], 60.0% [C1]) | Behavioral therapy: active music therapy | Patients - Individual; in-person - Administered by a music therapist | 12 sessions, three times a week, 30 min per session |
Sharbafshaaer et al. (2022) [40] | Italy | Mixed-method | To explore the potential role of psychological support interventions for family caregivers of patients with ALS through resilience-oriented sessions of group therapy during the COVID-19 pandemic | 12 caregivers [E: 6, C: 6] (mean age: 60.33 [E], 53.29 [C]; female: 66.7% [E], 57.1% [C]; spouse: 83.3% [E], 74.1% [C]) | Counseling, social support: Individual tele-consult and resilience-oriented sessions of group therapy | Caregivers - Individual & group; online - Administered by a psychologist/psychotherapist | 3 months, individual video-consults (1/month) & group therapy (2/month), 60 min per session |
Ugalde et al. (2018) [33] | Australia | Mixed-method | To investigate the feasibility and acceptability of a therapeutic group intervention promoting self-care, problem-solving and mindfulness to informal caregivers of people with MND | 13 caregivers (mean age: 57; female: 46%, spouse: 92%) | Education, counseling, social support: Therapeutic group intervention | Caregivers - Group; in-person - Conducted by two clinical psychologists | 2.5 h, two sessions |
van Groenestijn et al. (2015) [7] | the Netherlands | RCT | To compare the effects of CBT and usual care on quality of life in patients with ALS and their caregivers | 15 patients [E: 10, C: 5] (mean age: 57.4 [E], 54.8 [C]; female: 40.0% [E], 40.0% [C]; mean ALSFRS: 41.0 [E], 40.0 [C]) 10 caregivers (mean age: 57.3 [E], 53.4 [C]; female: 70.0% [E], 60.0% [C]; spouse: 100.0 [E], 100.0 [C]) | Education, counseling: CBT sessions | Patients and caregivers - Individual [dyads or patient or caregiver alone]; in-person - Conducted by three psychologists | Median of 3 sessions, 1 h per session |