A Review: carers, MND and service provision. 2006

Carole Mockford, and Crispin Jenkinson, and Raymond Fitzpatrick
Health Services Research Unit, Department of Public Health, University of Oxford, UK.

Carers of people with MND may experience changes to their health and lifestyle. Statutory and voluntary organizations are able to support the carer in various ways. This review investigates the personal impact on carers and their experiences of service provision. A systematic search of online and grey literature was made for the period 1994-2004. Thirty-two key texts were retrieved and a narrative synthesis conducted. The main themes were: 1) Impact on carer: general health, emotional state, life satisfaction, socio-economic concerns, relationships, and protective factors; 2) Experience of service provision: primary care, health professionals, social care, written information, and voluntary organizations. There is a paucity of written documentation on the experience of assisting someone with MND. Data collected are diverse and sometimes contradictory. Sample sizes are often small and generalization difficult. Main findings show that maintenance of social support, activities, and a positive outlook may lessen the chance of ill health arising from long hours spent caring, and having a named coordinator may assist with access to resources, and provide practical and emotional support during and after the caring role. Carers may become ill themselves unless adequate support is given to them throughout the course of the disease.

UI MeSH Term Description Entries
D008019 Life Style Typical way of life or manner of living characteristic of an individual or group. (From APA, Thesaurus of Psychological Index Terms, 8th ed) Lifestyle Factors,Life Style Induced Illness,Lifestyle,Factor, Lifestyle,Life Styles,Lifestyle Factor,Lifestyles
D004644 Emotions Those affective states which can be experienced and have arousing and motivational properties. Feelings,Regret,Emotion,Feeling,Regrets
D006296 Health Services Services for the diagnosis and treatment of disease and the maintenance of health. Services, Health,Health Service
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000690 Amyotrophic Lateral Sclerosis A degenerative disorder affecting upper MOTOR NEURONS in the brain and lower motor neurons in the brain stem and SPINAL CORD. Disease onset is usually after the age of 50 and the process is usually fatal within 3 to 6 years. Clinical manifestations include progressive weakness, atrophy, FASCICULATION, hyperreflexia, DYSARTHRIA, dysphagia, and eventual paralysis of respiratory function. Pathologic features include the replacement of motor neurons with fibrous ASTROCYTES and atrophy of anterior SPINAL NERVE ROOTS and corticospinal tracts. (From Adams et al., Principles of Neurology, 6th ed, pp1089-94) ALS - Amyotrophic Lateral Sclerosis,Lou Gehrig Disease,Motor Neuron Disease, Amyotrophic Lateral Sclerosis,Amyotrophic Lateral Sclerosis With Dementia,Amyotrophic Lateral Sclerosis, Guam Form,Amyotrophic Lateral Sclerosis, Parkinsonism-Dementia Complex of Guam,Amyotrophic Lateral Sclerosis-Parkinsonism-Dementia Complex 1,Charcot Disease,Dementia With Amyotrophic Lateral Sclerosis,Gehrig's Disease,Guam Disease,Guam Form of Amyotrophic Lateral Sclerosis,Lou Gehrig's Disease,Lou-Gehrigs Disease,ALS Amyotrophic Lateral Sclerosis,Amyotrophic Lateral Sclerosis Parkinsonism Dementia Complex 1,Amyotrophic Lateral Sclerosis, Parkinsonism Dementia Complex of Guam,Disease, Guam,Disease, Lou-Gehrigs,Gehrig Disease,Gehrigs Disease,Sclerosis, Amyotrophic Lateral
D001294 Attitude to Health Public attitudes toward health, disease, and the medical care system. Health Attitude,Attitude, Health,Attitudes, Health,Health Attitudes,Health, Attitude to
D012944 Social Support Support systems that provide assistance and encouragement to individuals with physical or emotional disabilities in order that they may better cope. Informal social support is usually provided by friends, relatives, or peers, while formal assistance such as COMMUNITY SUPPORT is provided by churches, groups, etc. Perceived Social Support,Social Care,Online Social Support,Care, Social,Online Social Supports,Perceived Social Supports,Social Support, Online,Social Support, Perceived,Social Supports, Online,Social Supports, Perceived,Support, Online Social,Support, Perceived Social,Support, Social,Supports, Perceived Social
D017028 Caregivers Persons who provide care to those who need supervision or assistance in illness or disability. They may provide the care in the home, in a hospital, or in an institution. Although caregivers include trained medical, nursing, and other health personnel, the concept also refers to parents, spouses, or other family members, friends, members of the clergy, teachers, social workers, fellow patients. Family Caregivers,Informal Caregivers,Spouse Caregivers,Care Givers,Carers,Care Giver,Caregiver,Caregiver, Family,Caregiver, Informal,Caregiver, Spouse,Caregivers, Family,Caregivers, Informal,Caregivers, Spouse,Carer,Family Caregiver,Informal Caregiver,Spouse Caregiver
D019992 Databases as Topic Works on organized collections of records, standardized in format and content, that are stored in any of a variety of computer-readable modes. Data Banks as Topic,Data Bases as Topic,Databanks as Topic
D020380 Needs Assessment Systematic identification of a population's needs or the assessment of individuals to determine the proper level of services needed. Assessment of Health Care Needs,Determination of Health Care Needs,Educational Needs Assessment,Assessment of Healthcare Needs,Determination of Healthcare Needs,Assessment, Educational Needs,Needs Assessment, Educational,Needs Assessment, Healthcare,Needs Assessments,Needs Assessments, Educational,Needs Assessments, Healthcare

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