ALS: Family caregiver needs and quality of life

Williams, Mary Tederous; Donnelly, James P.; Holmlund, Tomas; Battaglia, Michael P.

doi:10.1080/17482960801934148

Cited by 68 publications

(77 citation statements)

References 31 publications

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“…The findings show that quality of life is compromised compared with the general working age population and that carers in LTNC experience strain from their caregiving role. This is in line with previous findings [2,4,6-8]. Furthermore, differences were found in quality of life and strain between the carers of the three different LTNCs.…”

Section: Discussionsupporting

confidence: 93%

“…As informal caregivers play an important role in the care for LTNCs, it is important to consider their well-being and the support that health and social services can provide to help carers in the caregiving role. Quality of life of caregivers of someone with one of these three LTNCs is impaired [2,4,6-8], and quality of life is poorer when the symptoms are more severe, the amount of time spent caring increases or if the patient is depressed [4,5,7,9-11]. …”

Section: Introductionmentioning

confidence: 99%

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Carer quality of life and experiences of health services: a cross-sectional survey across three neurological conditions

Peters

Jenkinson

Doll

et al. 2013

Health Qual Life Outcomes

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BackgroundNeurological conditions have a substantial impact on carers, with carer well-being having been shown to be influenced by a number of demographic, patient and caregiving factors. Support given to carers can lead to better coping. This study investigated the relationship between carer well-being and experiences with health and social services.MethodsA cross-sectional survey was conducted of 1910 (37.4%) of carers of 5109 people with motor neuron disease (MND) (n=434, 54.9%), multiple sclerosis (MS) (n=721, 30.7%) and Parkinson’s disease (PD) (n=755, 38.2%). Carers completed a generic health status measure (SF-12), a carer strain measure (Carer Strain Index- CSI) and a newly developed questionnaire on health and social care experiences. Data were analysed by analysis of variance with p set at <0.05.ResultsCarer well-being was found to be compromised and differed significantly between the three conditions. Furthermore, a considerable number of carers experienced problems with aspects of health and social care, although there was no clear pattern according to the condition that was cared for. The total number of problems reported did not differ significantly between conditions but was significantly (all p<0.001) associated with carer quality of life (both physical and mental health) and strain, even when other influencing factors (demographic and caregiving variables) were corrected for. The association was particularly strong for carer strain, and less strong (but still significant) for quality of life.ConclusionsThe results show that carer well-being is compromised, in line with previous studies. Furthermore, the link of carer well-being to the number of problems reported suggests that minimizing problems experienced could improve carer well-being. This stresses the importance of health and social services appropriately supporting carers.

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Section: Discussionsupporting

confidence: 93%

Section: Introductionmentioning

confidence: 99%

Carer quality of life and experiences of health services: a cross-sectional survey across three neurological conditions

Peters

Jenkinson

Doll

et al. 2013

Health Qual Life Outcomes

View full text Add to dashboard Cite

show abstract

“…It is quite intuitive, according to clinical experience, that the worsening of the physical condition of ALS an patient produces worries and burden to their relatives and close friends, in accordance with previous literature [9,26]. Considering the correlational design of the study, however, another possible explanation cannot be excluded, even if counterintuitive: Change can be promoted by an improvement in the quality of assistance, paying more attention to oral care, cough assistance, and secretion management.…”

Section: Discussionsupporting

confidence: 85%

Respiratory function of people with amyotrophic lateral sclerosis and caregiver distress level: a correlational study

Pagnini

Banfi

Lunetta

et al. 2012

BioPsychoSocial Med

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BackgroundAmyotrophic Lateral Sclerosis (ALS) is a rare, fatal neurodegenerative disorder with no curative treatment characterized by degeneration of motor neurons involving a progressive impairment of motor and respiratory functions. Most patients die of ventilator respiratory failure. Caregivers have a great influence on the patient”s quality of life as well as on the quality of care. Home influence of the caregiver on patient care is notable. To date, no study has investigated how psychological issues of caregivers would influence respiratory variables of ALS patients. The study aimed at finding out if there is a relationship between the respiratory function of ALS patients and the level of distress of their caregivers.MethodsA cross-sectional study was conducted to investigate respiratory issues (PCF and FVC) and the perception of social support of ALS patients. Caregivers filled questionnaires about trait anxiety, depression, and burden of care. Forty ALS patients and their caregivers were recruited.ResultsFVC and PCF were positively related to patient perception of social support and negatively related to caregiver anxiety, depression, and burden.DiscussionThe distress of ALS caregivers is related to patient respiratory issues. The first and more intuitive explanation emphasizes the impact that the patient’s clinical condition has with respect to the caregiver. However, it is possible to hypothesize that if caregivers feel psychologically better, their patient’s quality of life improves and that a condition of greater well-being and relaxation could also increase ventilatory capacity. Furthermore, care management could be carried out more easily by caregivers who pay more attention to the patient's respiratory needs.ConclusionPatient perception of social support and caregiver distress are related to respiratory issues in ALS.

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“…Taking care of a loved-one can apparently give the caregiver the feeling of doing a good job which in turn contributes positively to coping with the demands of caregiving 40. It is important to consider both positive and the negative aspects when offering caregiver support.…”

Section: Discussionmentioning

confidence: 99%