Caring for a Loved One with Advanced Cancer: Determinants of Psychological Distress in Family Caregivers

Ecole de service social, Université Laval, Centre de recherche en cancérologie, Université Laval, Québec, Canada.
Journal of Palliative Medicine (Impact Factor: 1.91). 09/2006; 9(4):912-21. DOI: 10.1089/jpm.2006.9.912
Source: PubMed


Family caregivers caring for a patient with terminal cancer may experience significant psychological distress.
The purpose of this study was to determine the extent to which the family caregivers' psychological distress is influenced by the patients' performance status while taking into account individual characteristics of caregivers and their unmet needs.
Two hundred twelve family caregivers were assigned to three cohorts according to the patient's performance status, as measured by the Eastern Collaborative Oncology Group Functional Scale (ECOGS). Interview information was collected on the services and care provided, as well as on the caregivers' characteristics and level of psychological distress.
Family caregivers' psychosocial distress is strongly associated with the patients' terminal disease progress and declined functioning. The level of psychological distress varies from 25.2 to 33.5 (p = 0.0008) between the groups. Moreover, the percentage of caregivers with a high level of psychological distress varies from 41% to 62%, while this percentage is estimated at 19.2% in general population. A high distress index was significantly associated with the caregiver's burden, the patient's young age, the patient's symptoms, the caregiver's young age and gender, a poor perception of his/her health and dissatisfaction with emotional and tangible support.
Family caregivers of patients in the advanced stages of cancer experience a high level of psychological distress, which increases significantly as the patient loses autonomy. Health care policies and programs need to be revisited in order to take the reality of these patients and their families into account.

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Available from: Serge Dumont, May 04, 2014
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    • "[4] The identification of social and psychological resources presents an opportunity to utilise them in a revised resorce model of stress and coping such as that presented in Figure 1. A substantial literature attests to the stress of informal caregiving and its impact on both mental and physical health, [5] [6] [7] with female caregivers experiencing more stress than male caregivers. [8] [9] [10] Applying the stress model to care giving would predict a correlation between the burden of caring and psychological distress. "

    12/2015; 3(2). DOI:10.5430/cns.v3n2p59
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    • "Nos últimos anos, são múltiplos os estudos de investigação sobre os familiares prestadores de cuidados das pessoas em situação final de vida que reportam áreas como as consequências (Aoun, Kristjanson, Hudson, Currow, & Rosenberg, 2005; Holtslander, 2008); a sobrecarga (Dumont et al., 2006); a perda e o luto (Ferrario, Rossi, Cardillo, Vicario, Balzarini, & Zotti, 2004); e sobre programas de apoio aos mesmos (Caress, Chalmers, & Luker, 2009; Hudson, Thomas, Quinn, Cockayne, & Braithwaite, 2009; Hudson, Aranda, & Hayman-White, 2005; McMillan, Harding et al., 2004; Witkowski, & Carlsson, 2004; Hudson, 2003). O objetivo desta revisão é sistematizar o conhecimento existente sobre o impacto dos programas educacionais nos familiares prestadores de cuidados a pessoas em fase terminal e delinear as implicações dos resultados para pesquisas futuras, bem como para a prestação de cuidados. "
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    ABSTRACT: Os membros da família prestadores de cuidados a pessoas em fase terminal no domicílio são conhecidos por terem altos níveis de morbilidade e necessidades. São múltiplos os programas educacionais implementados que visam facilitar o processo de adaptação a este papel, mas cujo impacto não é conhecido. O objetivo desta revisão integrativa é sistematizar o conhecimento disponível sobre o impacto dos programas educacionais neste grupo específico de cuidadores. Identificaram-se seis artigos, onde se destaca o impacto positivo ao nível da saúde e qualidade de vida dos cuidadores familiares; na melhoria da percepção de aspetos positivos do cuidar; no conhecimento sobre a patologia e sua evolução, na gestão do regime medicamentoso e controlo de sintomas, entre outros. Concluí-se que os programas educacionais têm um impacto positivo. Porém, a evidência é frágil e os autores sugerem maior rigor na implementação dos programas assim como a utilização de instrumentos de monitorização dos resultados mais adequados. Family caregivers of terminal ill patient at home are known to have high levels of morbidity and needs. There are multiple educational programs implemented that are designed to facilitate the process of adapting to the caregiver role, but whose impact is not conclusive. The purpose of this integrative review is to systematize the available knowledge about the impact of educational programs in this specific group of caregivers. We identified six articles, which highlights the positive impact on the level of health and quality of life of family caregivers; on the improvement of the perception of positive aspects of caring; the knowledge about the pathology and its development, the management and monitoring of medication regimen and symptoms, among others. We concluded that educational programs have a positive impact. However, the evidence is weak and the authors suggest a more rigorous implementation of these programs and the use of more appropriate monitoring tools.
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    • "The physical, psychological and emotional effects of caregiving can be extensive and are widely reported (Campbell et al. 2008, Etters et al. 2008, Kim & Schulz 2008). Among the reasons for this, poorly managed or under-treated patient pain is known to exacerbate caregiver distress (Dumont et al. 2006). Older people commonly suffer from chronic painful conditions, such as arthritis, osteoporosis and cancer , as well as being likely to suffer acute pain sustained from fractures and falls (Breivik et al. 2006, Hadjistavropoulos & Fine 2006, American Geriatrics Society 2009, Fine 2012, Patel et al. 2013). "
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    ABSTRACT: Few pain studies have made community-dwelling people with dementia (PWD) their focus. The aim of this study was to determine the prevalence of pain among this patient population and to explore medication use. Moreover, we sought to investigate patient and caregiver variables associated with the presence of pain. Community-dwelling PWD and their caregivers were recruited between May 2009 and July 2012 from outpatient memory clinics in Northern Ireland to take part in a face-to-face structured interview with a researcher. Patients' cognitive status and presence of depression were established. A full medication history was taken. Both patients and caregivers were asked to rate patients' pain, at the time of the interview and on an average day, using a 7-point verbal descriptor scale. From the 206 patients who were eligible to take part, 75 patient-caregiver dyads participated in the study (participation rate = 36.4%). The majority of patients (92.0%) had dementia classed as mild or moderate. Pain was commonly reported among the sample, with 57.3% of patients and 70.7% of caregivers reporting patient pain on an average day. Significant differences were found between patients' and caregivers' reports of pain. Two-fifths of patients (40.0%) were prescribed analgesia. Antipsychotic, hypnotic and anxiolytic drug use was low, whereas antidepressant drugs were prescribed more commonly. Presence of pain was unaffected by dementia severity; however, the use of prescribed analgesic medication was a significant predictor of the presence of pain in these patients, whether reported by the patient or their caregiver 'right now' or 'on an average day' (P < 0.001). Patient and caregiver recruitment was challenging, and remains a barrier to research in this area in the future. © 2015 John Wiley & Sons Ltd.
    Health & Social Care in the Community 02/2015; DOI:10.1111/hsc.12204 · 1.15 Impact Factor
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