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Publication
Caregivers´ and healthcare professionals´ perspectives on caregivers´ burden on neurodegenerative diseases
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Abstract(s)
INTRODUÇÃO: As doenças neurodegenerativas (NDD) são doenças progressivas e
debilitantes, que condicionam a dependência do doente e, consequentemente, a necessidade de
cuidados. Relata-se que cerca de 33,3% dos cuidadores de doentes com NDD sofrem de
desgaste do cuidador moderado a grave. O desgaste do cuidador está associado a um risco
acrescido de problemas de saúde, física e mental, assim como à institucionalização precoce dos
doentes. O principal fator contribuinte e as estratégias de minimização de risco para este
problema ainda não são conhecidos. O objetivo deste estudo é explorar as perspetivas dos
cuidadores informais e profissionais de saúde sobre estes dois aspetos cruciais do desgaste do
cuidador associado às NDD.
MÉTODOS: Foi elaborado e disseminado um questionário, em formato on-line e em papel,
através de redes sociais, instituições de saúde e associações nacionais de doentes. Os
profissionais de saúde e os cuidadores de doentes com NDD foram convidados a participar.
RESULTADOS: Uma amostra total de 172 participantes respondeu ao questionário (100
cuidadores e 72 profissionais de saúde). Os fatores contribuintes mais reportados foram a
dependência do doente (n=46, 9%), falta de tempo livre do cuidador (n=33, 6%) e
desinformação (n=29, 6%). As alterações comportamentais dos doentes (4,5 ± 0,9) e a
dependência nas atividades da vida diária (4,5 ± 1,0) foram classificadas como tendo um
impacto significativo no bem-estar dos cuidadores. As estratégias de minimização de risco mais reportadas incluíram apoio socioeconómico (n=122, 24%), maior consciencialização sobre a
doença (n=52, 10%) e acesso facilitado a cuidados especializados para o doente (n=50, 10%).
CONCLUSÕES: Na opinião dos cuidadores e profissionais de saúde, a dependência do
doente, a falta de tempo livre do cuidador e a desinformação são os principais fatores de
desgaste do cuidador. De acordo com os resultados deste estudo, a melhor estratégia de
prevenção de desgaste do cuidador é uma intervenção precoce que inclui ambas estratégias
diretas e indiretas (ex.: através do doente) ao cuidador.
INTRODUCTION: Neurodegenerative diseases (NDD) are progressive and debilitating conditions that lead to dependence and need of care. Evidence shows 33,3% of caregivers of NDD patients suffer from moderate to severe burden. An increased risk of mental and physical health problems as well as patients' early admission into nursing homes are both associated with the burden of caregiving. Currently, the main contributing factor and risk minimization strategies are not yet established. This study aims to explore the perspectives of caregivers and healthcare professionals on these two crucial aspects of caregivers’ burden associated with NDD. METHODS: An online and paper-based survey was disseminated through social network, healthcare institutions outpatient clinic and national patient associations. Healthcare professionals and caregivers of patients with NDD were invited to participate. RESULTS: A total sample of 172 participants answered the survey (100 caregivers and 72 health professionals). The most reported contributing factors were the patient’s dependency (n=46, 9%), caregiver's lack of free time (n=33, 6%), and misinformation (n=29, 6%). Patients’ behavioral changes (4,5 ± 0,9) and dependence on daily activities (4,5 ± 1,0) were rated as having a significant impact on caregivers' wellbeing. The most reported risk minimization strategies included socioeconomic support (n=122, 24%), greater awareness of diseases (n=52, 10%), and easier access to specialized care (n=50, 10%). CONCLUSIONS: Patient’s dependency, caregivers lack of free time and misinformation are, in caregivers and healthcare professionals’ opinion, the main factors for caregivers’ burden. According to study results, the best way to avoid caregiver burden situations is an early intervention that includes both direct and indirect (i.e., through the patient) interventions on the caregiver.
INTRODUCTION: Neurodegenerative diseases (NDD) are progressive and debilitating conditions that lead to dependence and need of care. Evidence shows 33,3% of caregivers of NDD patients suffer from moderate to severe burden. An increased risk of mental and physical health problems as well as patients' early admission into nursing homes are both associated with the burden of caregiving. Currently, the main contributing factor and risk minimization strategies are not yet established. This study aims to explore the perspectives of caregivers and healthcare professionals on these two crucial aspects of caregivers’ burden associated with NDD. METHODS: An online and paper-based survey was disseminated through social network, healthcare institutions outpatient clinic and national patient associations. Healthcare professionals and caregivers of patients with NDD were invited to participate. RESULTS: A total sample of 172 participants answered the survey (100 caregivers and 72 health professionals). The most reported contributing factors were the patient’s dependency (n=46, 9%), caregiver's lack of free time (n=33, 6%), and misinformation (n=29, 6%). Patients’ behavioral changes (4,5 ± 0,9) and dependence on daily activities (4,5 ± 1,0) were rated as having a significant impact on caregivers' wellbeing. The most reported risk minimization strategies included socioeconomic support (n=122, 24%), greater awareness of diseases (n=52, 10%), and easier access to specialized care (n=50, 10%). CONCLUSIONS: Patient’s dependency, caregivers lack of free time and misinformation are, in caregivers and healthcare professionals’ opinion, the main factors for caregivers’ burden. According to study results, the best way to avoid caregiver burden situations is an early intervention that includes both direct and indirect (i.e., through the patient) interventions on the caregiver.
Description
Keywords
Doenças neurodegenerativas Desgaste do cuidador Sobrecarga do cuidador Doença de Alzheimer Doença de Parkinson Doença de Huntington Ataxia espinocerebelosa Neurodegenerative diseases Caregiver’s burden Alzheimer’s disease Parkinson’s disease Huntington’s disease Spinocerebellar ataxia