Caregivers of people with amyotrophic lateral sclerosis (ALS) and progressive muscular atrophy (PMA) say a Dutch support program — one based on Acceptance and Commitment Therapy — empowered them to make better choices in line with their own needs, and to cope with distress, a study shows.
The study, “User perspectives on a psychosocial blended support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: a qualitative study,” was published in BMC Psychology.
Partners are often the main caregivers of people with ALS or PMA, progressive degenerative disorders. During the diseases’ course, these caregivers face many challenges that pose a significant emotional and physical burden on their own lives.
“They are faced with physical deterioration and possible cognitive and behavioral changes in patients, which results in increasing demands on the caregiver. Caregivers who experience increasing demand but do not feel in control over the caregiving situation are more likely to experience psychological distress,” the investigators said.
In an effort to support caregivers, minimize their distress, and boost their feelings of control over their situation, researchers in the Netherlands created a psychosocial support program based on Acceptance and Commitment Therapy (ACT).
“ACT encourages individuals to accept unwanted private events which are out of personal control and to identify important values in life in order to pursue these values which might help caregivers of patients with ALS or PMA,” the researchers said.
“The program consists of a combination of face-to-face-, online- and telephonic contact (i.e. blended support). The content of the support program is originated from an existing intervention for partners of people with cancer and adapted to the needs of caregivers of patients with ALS and PMA,” they added.
In this study, part of an ongoing randomized clinical trial (NTR5734) evaluating the effectiveness of the support on carers’ distress, the researchers set out to gather caregivers’ feedback on the program.
The two major goals were to assess caregivers’ experiences with the program’s different components (program evaluation) and to find out how carers benefited from following it (mechanisms of impact).
The qualitative study involved a total 23 caregivers of ALS or PMA patients, of which 17 completed the full program. The participants expressed their opinions on the blended support program during individual, in-depth interviews, which were recorded, transcribed, and analyzed by categories.
The blended support program, carried out under the guidance of a licensed psychologist, consisted of a combination of psychoeducation, psychological and mindfulness exercises, practical tips and general information, and options for peer contact.
Program evaluation data showed that, in general, carers felt each component of the program was useful, and appreciated the support. However, some caregivers had mixed feelings on the mindfulness exercises and peer contact — suggesting that both components should be further adapted to suit individual participants’ needs.
Carers also claimed they would prefer to participate in a more flexible, personalized program that would allow them to select the order and timing of each module rather than following a fixed course. Most of them said they were interested in continuing the support program for longer periods of time.
Regarding the mechanisms of impact, most carers reported the support program helped them to become more aware of their situation, and to take control over caregiving. They also felt the program helped them to accept negative thoughts and emotions, feel acknowledged, and be more present in the life of their partners.
“Our program should be considered as a complementary approach to multidisciplinary ALS care in which the important role of these caregivers and their risk of distress and burden are acknowledged,” the researchers said.
“Offering interventions by the ALS care team early in the disease course and repeatedly thereafter is preferable, as care needs change over time. Providing information about the content of the program and subsequently tailoring the program to the specific needs of the caregivers (i.e. caregivers choose which module at what time and which pace) may increase the perceived benefits and compliance with the intervention,” they added.