title: Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews.
abstract: BACKGROUND
  Family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, an incurable, mostly rapidly fatal neurodegenerative disease, face many challenges. Although there is considerable research on caregiver burden in Motor Neurone Disease/Amyotrophic Lateral Sclerosis, there is less knowledge of the positive aspects of caring.
  
  
  OBJECTIVE
  To explore the experiences of family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, specifically the relationship between positive and negative experiences of caring, and to identify possible ways to better support these caregivers.
  
  
  METHODS
  Secondary thematic analysis of 24 semi-structured qualitative interviews conducted longitudinally with 10 family caregivers. Interviews explored rewarding and unrewarding aspects of caring.
  
  
  RESULTS
  Themes emerged around burden, needs, rewards and resilience. Resilience included getting active, retaining perspective and living for the moment. Burden was multifaceted, including social burden, responsibility, advocacy, ambivalence, guilt and struggling with acceptance. Rewards included being helped and 'ticking along'. Needs were multifaceted, including social, practical and psychological needs. The four main themes were interrelated. A model of coping was developed, integrating resilience (active/positive), burden (active/negative), needs (passive/negative) and reward (passive/positive).
  
  
  CONCLUSIONS
  Burden, resilience, needs and rewards are interrelated. Caregivers' ability to cope with caring for a person with Motor Neurone Disease/Amyotrophic Lateral Sclerosis oscillates between positive and negative aspects of caring, being at times active, at times passive.
  
  
  CONCLUSIONS
  Coping is a non-linear process, oscillating between different states of mind. The proposed model could enable clinicians to better understand the caregiver experience, help family caregivers foster resilience and identify rewards, and develop appropriate individualised caregiver support plans.
authors.affiliation: King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, UK fabia.weisser@bluewin.ch.
authors.forename: Fabia B
authors.initials: FB
authors.lastname: Weisser
authors.affiliation: King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, UK.
authors.forename: Katherine
authors.initials: K
authors.lastname: Bristowe
authors.affiliation: King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, UK.
authors.forename: Diana
authors.initials: D
authors.lastname: Jackson
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000451:nursing*; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D005192:Family Health; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000451:nursing*; D020380:Needs Assessment; D036301:Qualitative Research; D055500:Resilience, Psychological; D012201:Reward; D012944:Social Support; D013315:Stress, Psychological / Q000523:psychology; D011795:Surveys and Questionnaires
keywords: Motor Neurone Disease/Amyotrophic Lateral Sclerosis; burden; coping; family caregiver; needs; resilience; rewards; secondary thematic analysis