A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

Abstract

Background: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness. Aim: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group. Design: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000–April 2011. Fifty-nine studies met the inclusion criteria. Results: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care. Conclusions: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.

“I hate being a burden”: The patient perspective on carer burden in amyotrophic lateral sclerosis

“…Caring for a family member can have a significant physical, social, emotional, and financial impact on those who care (1,2). Family carers in ALS encounter caregiver burden (3,4) and caregiver burden can have an adverse effect on their wellbeing (5). Caregiver burden in ALS increases with disease duration (6) and is higher among those who care for patients who have behavioural impairment (7).…”

The Caregiver Role in Palliative Care: A Systematic Review of the Literature

“…Six studies intended to examine the influence of gender, skills, experiences and needs of carers in their home environment and two studies tried to do it in a hospital setting [6,[14][15][16][17][18]. One study reported caregivers experiences with ventilated patients at home, and other showed the evidence of caring for patients with Amyotrophic Lateral Sclerosis (ALS) [12,19] Four studies did not specify the setting of care where the patient was during the data collection [9,13,16,17,[20][21][22], and four did not make reference to the fact that the patient was followed or not by a PC team.…”

“…The same review alerted to the fact that most of the studies in this area were focused on the description of the profile of these family carers, instead of focusing on the development of interventions aiming to assist the caregivers to cope with their everyday emotions, instrumental and spiritual issues [9].…”

Optimizing Patient Autonomy in Amyotrophic Lateral Sclerosis: Inclusive Decision-Making in Multidisciplinary Care

“…Carers have substantial involvement in ALS patient care [17] and value patients' autonomy over their choices [10]. As well as offering emotional and logistical support, carers promote patient autonomy through synthesis of ALS health information and advocacy in healthcare appointments [10].…”

“…However, carer participation in decisionmaking and advocacy is moderated by the high burden and distress they experience [17]. Similar to health professionals, carers may find themselves torn between respect for patient autonomy and supporting patient participation in care.…”