Integrating Caregiver Support into Multiple Sclerosis Care

Abstract

With loss of mobility in Multiple Sclerosis (MS) comes increase in caregiver assistance, burden, stress, and depression. This 6-month feasibility study used a pre-post design to test integration of a validated, behavioral, caregiving intervention into an ongoing MS clinic. Because the program focused on caregivers, there were no additional services provided to the persons living with MS other than usual medical care. Twenty-five MS caregivers received REACH VA (Resources for Enhancing All Caregivers’ Health in the VA), a six-session behavior-focused intervention during two to three months designed to increase caregiver skills in managing their own stress and burden and MS related issues and concerns, with a focus on mobility. Caregivers were assessed at baseline, three, and six months. Caregivers’ expectations of the program were to receive education on MS, caregiving and stress management skills, and support. The major benefits caregivers reported were understanding their loved one’s condition and how to better provide care. At six months, caregivers reported statistically and clinically significant improvements in depressive symptoms and bother with challenging MS behaviors. Persons with MS reported benefit for their caregivers and for themselves; 71% reported that their caregivers had helped them with mobility and function. Study results suggest that the addition of the brief REACH caregiver intervention into an MS clinic would benefit both caregivers and persons with MS. Although the intervention was six sessions over three months, benefit persisted at six months, suggesting durability of effects. This trial is registered with ClinicalTrials.gov NCT02835677.

<p>The Experiences of Multiple Sclerosis Patients’ Family Caregivers at the First Hospitalization of Their Patients: A Qualitative Study</p>

“…5 Preparing MS patients' family caregivers by giving them information about their patients' disorder and teaching them coping and problem-solving strategies can significantly improve their quality of life. 24 Nurses' regular contact with patients and their family caregivers gives them a good chance to identify their educational needs and provide information and instructions accordingly. 41 A study reports family caregivers' discontent at healthcare teams' insufficient education for them about medication and the right ways of giving care.…”

“…23 Family caregivers suffer from restricted social interactions, financial issues, and uncertainty about the future. 24 In the context of Iranian healthcare, family members are an important source of support in caring for inpatients: they attend to their patients' personal hygiene and nutrition, obtain their medication, and take their specimens to laboratories outside the hospital. 25 Although it is vital that family caregivers be supported, they have inadequate interactions with healthcare team members and are not provided with the information they need for their safety and welfare.…”

Perceived social support, mental health, and marital satisfaction in multiple sclerosis patients

“…At the same time, it is a period of illness in which psychological and social losses are experienced, mental disorders increase, patient communication and marital relations deteriorate, and social support is needed. For this reason, MS is a source of multiple stress that requires different coping methods and increases the need for home care or supportive care of patients due to the symptoms experienced and their dependence on any informal caregiver, especially family members, in daily living activities 15–17,31,33–37 . With an estimate of 53%–70%, 38 39 these people providing supportive care are patients' spouses or parents, children, siblings, and sometimes friends.…”

Psychoeducational Interventions for Caregivers of Persons With Multiple Sclerosis: Protocol for a Randomized Trial

“…Although caregivers of persons with multiple sclerosis report poor emotional and physical outcomes, to date, few researchers have tested interventions for these caregivers. Interventions delivered to both persons with multiple sclerosis and their caregivers [ 24 , 25 , 32 ] and interventions delivered solely to caregivers [ 23 , 33 - 35 ] have been published. Of the interventions focused solely on caregivers, the types of interventions varied, including a group psychoeducational intervention [ 23 ], a psychoeducational intervention for empowerment [ 33 ], a cognitive behavioral web-based mindfulness intervention [ 34 ], and a behavioral intervention providing information and skills related to patient mobility problems [ 35 ].…”

“…Interventions delivered to both persons with multiple sclerosis and their caregivers [ 24 , 25 , 32 ] and interventions delivered solely to caregivers [ 23 , 33 - 35 ] have been published. Of the interventions focused solely on caregivers, the types of interventions varied, including a group psychoeducational intervention [ 23 ], a psychoeducational intervention for empowerment [ 33 ], a cognitive behavioral web-based mindfulness intervention [ 34 ], and a behavioral intervention providing information and skills related to patient mobility problems [ 35 ]. Outcomes have focused on caregiver burden, empowerment, anxiety, and depression—factors shown to relate to ongoing emotional and physical dysfunction [ 9 , 23 - 36 ].…”