Emotional burden and coping strategies in amyotrophic lateral sclerosis caregivers: the role of metacognitions

Quattropani, Maria C.; Foresta, Stefania La; Russo, Massimo; Faraone, Cristina; Pistorino, Giovanna; Lenzo, Vittorio; Marconi, Anna Maria; Vita, Gianluca; Sframeli, Maria; Distefano, Maria G.; Sansone, Valeria; Vita, Giuseppe; Lunetta, Christian; Messina, Sonia

doi:10.23736/s0391-1772.18.01961-1

Cited by 11 publications

(14 citation statements)

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“…All seven ALS studies excluded caregivers of patients presenting with cognitive and behavioural impairment. Caregivers were mainly spouse caregivers (range 57% 30 to 100% 31 ). On measures of current psychopathology, caregivers typically scored within the normal or mild ranges, suggesting the absence of clinical anxiety and depression.…”

Section: Resultsmentioning

confidence: 99%

“…Dysfunctional coping strategies related to self-oriented emotional responses is thought to be maladaptive (associated with higher anxiety) in situations of low control. 46 Less utilisation of problem-focused strategies such as planning 33 and greater behavioural disengagement 30 may have more detrimental consequences for caregivers of patients with advanced disease.…”

Section: Discussionmentioning

confidence: 99%

“…In ALS, the caregiver samples typically included those without clinical anxiety and depression or severe burden of care. 30,33,37,39,42 In contrast, the FTD caregiver samples reviewed, who also had low rates of psychopathology, were more highly burdened. 44 These findings are in keeping with the notion that coping and adaptation are dynamic processes.…”

Section: Research Gapmentioning

confidence: 99%

“…On measures of current psychopathology, caregivers typically scored within the normal or mild ranges, suggesting the absence of clinical anxiety and depression. 30,[32][33][34][35][36] Five studies were cross-sectional in design, 30,32,35,37,38 4 were longitudinal studies, 33,34,36,39 1 was an intervention study 40 and 1 was a qualitative study. 31 The sample size (minimum = 16 ALS caregivers and maximum = 126 ALS caregivers) and type greatly varied amongst studies, with one study including caregivers of FTD patients residing in nursing homes 41 and one study exploring bereaved ALS caregiver coping experiences.…”

Section: Overviewmentioning

confidence: 99%

“…denial of patient's diagnosis) was associated with negative caregiver outcomes, including prolonged grief, 31 psychological morbidity 33,37,42 and increased burden. 30,37,39 In addition, the mental health of caregivers was negatively correlated with burden, perceived quality of care, fatigue and negative relationship appraisals. 33,39 In FTD, problem-and emotion-focused coping strategies were most commonly used by caregivers, specifically active coping, planning and acceptance.…”

Section: Coping Strategiesmentioning

confidence: 99%

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A Systematic Review of Caregiver Coping Strategies in Amyotrophic Lateral Sclerosis and Frontotemporal Dementia

Caga

Kiernan

Piguet

2021

J Geriatr Psychiatry Neurol

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Caregivers of patients diagnosed with amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD) often experience distressing symptoms related to their caregiving role. This review evaluates the existing literature on coping and their relationship to ALS and FTD caregiver psychological wellbeing. Published articles were identified via a systematic search of four databases (Cinahl Complete, Medline, Embase and PsycINFO). Overall, problem-focused coping strategies such as active coping and planning was used most often by ALS and FTD caregivers. Positive emotion-focused coping strategies such as acceptance were also frequently used by FTD caregivers. In contrast, dysfunctional coping strategies such as self-oriented reactions including self-blame, denial and self-preoccupation appeared to be the most salient coping strategy negatively impacting on caregiver psychological wellbeing. Six different coping measures were used and their psychometric properties were typically under-reported or satisfactory at best when reported. While coping is as an important aspect of caregivers’ experience, it remains unclear how the temporal dimensions of the coping process as well as stressor specificity influences psychological adaptation, and consequently, development of targeted caregiver intervention. The need for future studies to define the coping process more clearly in order to capture the unique stressors encountered by ALS and FTD caregivers throughout the different disease stages is emphasised.

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Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Research Gapmentioning

confidence: 99%

Section: Overviewmentioning

confidence: 99%

Section: Coping Strategiesmentioning

confidence: 99%

See 3 more Smart Citations

A Systematic Review of Caregiver Coping Strategies in Amyotrophic Lateral Sclerosis and Frontotemporal Dementia

Caga

Kiernan

Piguet

2021

J Geriatr Psychiatry Neurol

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Sharing Medical Decisions with the Child. An Exploratory Survey in Paediatric Primary Care.

Dicé

Dolce

Maiello

et al. 2021

Child Care in Practice

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Religious Involvement, Depressive Symptoms, and Burden in Caregivers of Terminally Ill Patients

Asano

Kellogg

Sulmasy

et al. 2021

J Hosp Palliat Nurs

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Caring for terminally ill patients can be emotionally burdensome. Previous research has demonstrated that caregiving is associated with anxiety and depression. Research on caregivers of terminally ill patients is limited by retrospective studies with small samples. This study aimed to (1) describe religiosity, religious coping, and depressive symptoms in caregivers of persons with amyotrophic lateral sclerosis or advanced cancer; (2) examine the relationship between religiosity and depressive symptoms in caregivers of persons with amyotrophic lateral sclerosis or advanced cancer; (3) examine the relationship between religious coping and depressive symptoms in caregivers of persons with amyotrophic lateral sclerosis or advanced cancer. A descriptive exploratory design was used to analyze data from a larger 5-year National Institutes of Health-funded multisite randomized controlled trial (the TAILORED study). Nearly half of the caregivers screened positive for depressive symptoms, and negative religious coping was associated with higher depressive symptoms (P < .001). Spouse caregivers reported higher depressive symptoms than nonspouse caregivers. Many caregivers experienced depression, which was mitigated by positive religious coping. KEY WORDScaregiver burden, end of life, religious coping, terminally ill BackgroundCaring for patients with terminal illness can be emotionally difficult and burdensome. Caregiving has been associated with anxiety and depression, 1 and regardless of sex, age, or ethnicity, caregivers are at risk of major stress, anxiety, and depression and are vulnerable to physical and financial repercussions. 2 Previous studies highlighted that approximately 70% of family caregivers of patients receiving palliative care suffer from clinically relevant signs of anxiety and depression, 3 and 26% to 57% of caregivers reported depression. 4 A recent study found denial and self-blame predict high levels of anxiety and depression. 5 Caregiver burden is associated with caregiver stress and depression 6 and is particularly common among caregivers of patients with cancer, chronic obstructive pulmonary disease, and heart failure. 7 Informal caregivers, often spouses, relatives, or friends, frequently experience caregiver burden associated with mental, physical, emotional, social, or financial negative outcomes. 8 Recent research shows that patients with amyotrophic lateral sclerosis (ALS) and their caregivers become socially marginalized as the disease progresses and patients become more dependent on caregivers. 9 Moreover, caregivers reported feelings of guilt related to caregiver burden, as well as social isolation and loneliness. 9 Previous study of caregivers of patients who had experienced a stroke found the main caregivers experienced high burden and endured an equal to or greater than the occurrence of mental illness than did the patients. 6 Often, up to 64% of caregivers of persons after stoke experience anxiety and symptoms of depression. 6 Additionally, long-term caregiving is affected by financial...

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Emotional burden and coping strategies in amyotrophic lateral sclerosis caregivers: the role of metacognitions

Cited by 11 publications

References 0 publications

A Systematic Review of Caregiver Coping Strategies in Amyotrophic Lateral Sclerosis and Frontotemporal Dementia

A Systematic Review of Caregiver Coping Strategies in Amyotrophic Lateral Sclerosis and Frontotemporal Dementia

Sharing Medical Decisions with the Child. An Exploratory Survey in Paediatric Primary Care.

Religious Involvement, Depressive Symptoms, and Burden in Caregivers of Terminally Ill Patients

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