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The Caring Burden of the cohabitants related to the level of severity of the partners' dementia
Source publication
The aim of this study was to explore caring burden of cohabitants (N = 206) having partners with chronic obstructive pulmonary disease (COPD) or dementia in relation to aspects of social support. Caring burden was measured by the Relative Stress Scale and was found to be lower and to change less with severity in the COPD group. In multiple regressi...
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This study examines the impact of across domain social support, work-family conflict (WFC) and job satisfaction, and explores the influence of family role allocations among these relationships. Family roles include breadwinner and caregiver. Direct effects were found for two types of support and both WFC and job satisfaction. Additionally, results...
Background
Connections to people and place are particularly important for Indigenous Australians. It is currently unknown what role social support plays in helping this population cope with a diagnosis of cancer.
Aims
This study describes components of social support available for Indigenous Australians with cancer and investigates its association...
Citations
... According to the results of studies, caring for patients with COPD The independent t test, ** The Mann-Whitney U test, *** The chi-square test. and dementia is stressful, but caregivers of patients with dementia have more stress [36,37]. Also, since the patients' lifestyle suddenly changes following the loss of functional abilities of people during the stroke, it puts more pressure on the family [38]. ...
Objective Chronic obstructive pulmonary disease is one of the most common causes of death in the world, which affects the functional level of patients due to its progressive nature. disabilities caused by the disease lead to the dependence of these patients on family caregivers. Following the changes in caregivers’ lives, most family caregivers are exposed to psychological distress. Involving caregivers in pulmonary rehabilitation training for patients is one of the ways to reduce psychological distress. Considering the emergence of the digital age and the limitations of face-to-face training such as time and cost, mobile phone-based applications are available as one of the new methods for providing educational support to caregivers. Therefore, this study was conducted with the aim of determining the effect of the pulmonary rehabilitation application on the psychological distress of caregivers of people with chronic obstructive pulmonary disease. Materials & Methods This study is a field trial conducted on 70 family caregivers of people with chronic obstructive pulmonary disease. The samples were selected as available from the Sun Breathing Comprehensive Clinic and after checking the inclusion criteria, they were randomly assigned to intervention and control groups by minimization software. The intervention group used mobile phone-based pulmonary rehabilitation training application for 6 weeks. For the control group, face-to-face pulmonary rehabilitation training (routine) was provided in the form of 12 sessions during 6 weeks. The data collection tool included Kessler’s demographic information and psychological distress questionnaires, which were completed by caregivers before and after the intervention. Data analysis was done using SPSS version 24 software and Mann-Whitney, Chi-square and independent and paired t tests. Results According to the findings, the two groups were homogeneous in terms of demographic characteristics. The average age of caregivers in the intervention and control groups was (44.1±14.8), (47.7±13.8) years, respectively. In the intervention group, 71.4% were female caregivers and in the control group, 82.9% were female caregivers (P>0/05). Before the intervention, there was no significant difference in terms of psychological distress between the test and control groups (P<0.05), but after the intervention, there was a significant difference between the two groups in terms of psychological distress (P=0.001). The average score of psychological distress before and after the intervention in the intervention group was (14.97±6.65) and (10.25±4.50) respectively, and there was a significant decrease (P<0.000), but the psychological distress in the control group was (15.68±7.91). 5.42±14.60) had no significant change (P<0.05). Conclusion The results of this study indicate that training through a mobile-based pulmonary rehabilitation application may be useful in reducing the psychological distress of family caregivers of chronic obstructive pulmonary disease. Therefore, since the favorable mental state of caregivers has a significant effect on the quality of care provided , it is recommended to use this method in the training of caregivers of chronic obstructive pulmonary disease.
... For omsorgsgiver medfører omsorgsansvar forandringer i rolle, identitetsopplevelse, kommunikasjon, rutiner og planer. Blant pårørende er ektefeller spesielt sårbare som følge av tap, sorg og psykiske påkjenninger over tid (Lethin et al., 2016b;Davis et al., 2014;Ingebretsen og Solem, 1998;Clemmensen et al., 2019), og dessuten har de større risiko for å bli isolert fra sitt sosiale nettverk (Nordtug og Holen, 2011). Selv om belastningen er stor, kan omsorgen også gi pårørende positive opplevelser som ny innsikt, kompetanse, tilfredsstillelse og mestring av relasjonsforholdet og meningsfulle opplevelser (Tarlow et al., 2004;Autio og Rissanen, 2018;Hellström, Nolan og Lundh, 2007;Shim, Barroso og Davis, 2012;Wogn-Henriksen, 2012). ...
Background: Dementia is an increasing health problem with strong impact on affected individuals and their next-of-kin. Aim: To analyse the impact on next-of-kin co-ha-biting with their spouse who is living with dementia. Method: In-depth, semi-structured interviews with six spouses, of which four were women. Data was analysed by means of constant-comparative method as in Grounded Theory. Results: The main category was «Life has become different». The four first level sub-categories were «loss and adversity», «commitments as spouse», «utilize own resources», and «dilemmas when receiving professional care services». Conclusion: The results provide enhanced understanding of factors that strengthen the resilience and capability of spouses as caregivers. Further research on the interplay between next-of-kin as caregivers and professional services is required.
... (Pattanayak et al., 2010;Chiang et al., 2015;Gresswell et al., 2018;Avdikou et al., 2019;Brites et al., 2020)]. This trend was evident across different cultures and applied to various mental health disorders equally (Papastavrou et al., 2009;Nordtug and Holen, 2011;Pöysti et al., 2012). In addition, if wives cared for their husbands, they experienced lower marital satisfaction, while the opposite effect was observed in husbands caring for their wives (Beeson, 2003;Dahlberg et al., 2007;Lai, 2012;Choi, 2018). ...
A large number of multidisciplinary, qualitative and quantitative research suggests that providing care for family members with mental health illnesses can have both positive and negative effects on the carers' wellbeing. However, to date a comprehensive overview and synthesis of literature that compares and contrasts positive and negative effects of family-caregiving on the carer is missing. To address this gap, this scoping review examines the effects of family-caregiving on carers' wellbeing. A Boolean search generated a total of 92 relevant articles that were included in the analysis. The results suggest that, to understand the effects of family-caregiving on the carer's mental and physical wellbeing, it is necessary to take a combination of situational and sociodemographic characteristics into consideration. Elderly, female, spousal-carers and primary-carers may be a group that is at risk of suffering from a lack of positive mental and physical wellbeing as a result of caring. However, the negative effects of caregiving can be balanced by extraversion, social support and religious or spiritual beliefs. Therefore, future interventions that aim to promote family caregivers' wellbeing may need to take personality, particular circumstances as well as cultural and personal beliefs into consideration.
... Dementia has an immense impact on the lives of the family members as the disease develops, especially straining the main caregiver psychologically (Austin et al., 2016;Colquhoun et al., 2019;Nordtug and Holen, 2011;Nordtug et al., 2010;Quinn et al., 2015;Stall et al., 2019). One Norwegian study revealed that over half of the cohabitants of people with dementia were found to have a mental illness such as severe depression, anxiety and insomnia (Nordtug et al., 2010). ...
... When dementia progresses, self-reliance declines while the need for care and the caring burden both increase (Nordtug and Holen, 2011;Stall et al., 2019). At the same time, a person with dementia's capacity to reciprocate, care and participate in activities with others dwindles. ...
This qualitative study explores informal caregivers’ experiences of supporting persons with dementia’s everyday life coping. In the future, there will be fewer health personnel, increased dementia prevalence and limited nursing home availability. Accordingly, close relatives may be compelled to assume greater care responsibilities. Knowledge concerning persons with dementia’s everyday coping from the perspective of informal caregivers remains insufficient, despite these people’s importance for those with dementia. This investigation analyses informal caregivers’ perceived challenges and pleasures in providing care, how home health care affects everyday life coping and the factors that are most important to informal caregivers in supporting care receivers.
... The numbers of social network members in the social networks of participants in the present study were small, which supports the network sizes previously reported [62,63]. Personal social network members were limited to immediate family members, and the social networks were predominantly family-focussed, which is narrower than the 'family-' and 'friend-focussed' network typology described by Morris et al. [25]. ...
Background Unplanned hospital admissions (UHAs) for chronic obstructive pulmonary disease (COPD) are a major burden on health services. Effective medicines management is crucial to avoid such admissions but little is known about the role of social networks in supporting medicines-taking. Objective To examine the activities and strategies recently discharged COPD patients and their social network members (SNMs) utilise to manage their medicines. Setting COPD patients recently discharged from an acute NHS Trust in Northwest England. Methods Semi-structured, face-to-face interviews; audio-recorded and transcribed with consent, NVivo v11 facilitated qualitative thematic analysis. NHS ethical approved. Main outcome measure Interview topic guide and analysis informed by Cheraghi-Sohi et al.’s conceptual framework for ‘medication work’ exploring medication–articulation, informational, emotional and surveillance work. Results Twelve interviews were conducted during March–August 2016. Participants’ social networks were small (n < 5) and restricted to family members and healthcare professionals. Participants social network members performed similar medication–articulation and surveillance work to coronary heart disease, arthritis and diabetes patients. When participants social network members resolved issues identified by surveillance work, this medication work was conceptualised as surveillance–articulation work. The social network members performed little emotional work and were infrequently involved in informational work despite some participants describing informational needs. After discharge, participants reverted to pre-admission routines/habits/strategies for obtaining medication supplies, organising medicines, keeping track of supplies, ensuring adherence within daily regimens, and monitoring symptoms, which could cause issues. Conclusion This study applied Cheraghi-Sohi’s framework for medication work to COPD patients and described the role of the social network members. Pharmacists could proactively explore medication infrastructures and work with patients and their close social network members to support medication work.
... Last week 5 min or less Moderate Free No General Health Questionnaire (GHQ-28) Nordtug, 2011 [83] Goldberg, 1979 [84] 28 items 4-point scale 0e84 Subscales: Somatic symptoms (0 e21) Anxiety and insomnia (0e21) Social dysfunction (0 e21) Severe depression (0 e21) e 5 min or less Moderate Not free No Geriatric Depression Scale (GDS) short-form Lee, 2010 [40] Schreiner, 2006 [44] Yesavage, 1986 [85] 15 items yes/no 0e15 Last week 5-10 min Easy Free Hypothesis testing Hospital Anxiety and Depression Scale (HADS) Al-Gamal, 2014 [36] Al-Gamal, 2014 [37] Azoulay, 2013 [20] De Miranda, 2011 [21] Farquhar, 2016 [27] Figueiredo, 2014 [38] J acome, 2014 [39] Lee, 2010 [40] Meier, 2011 [41] Nakken, 2016 [42] Zigmond, 1983 [86] 14 items 4-point scale Subscales: Anxiety (0e21) Depression (0 e21) Last week 5 min or less Moderate Free Internal consistency, hypothesis testing Patient Health Questionnaire (PHQ-9) ...
... Approximately 5 min Easy Free No Relative Stress Scale (RSS) Nordtug, 2011 [99] Nordtug, 2011 [83] Ross, 1997 [48] Greene, 1982 [100] 15 items 5-point scale 0e60 Subscales: Personal distress scale (0e24) Life upset scale (0 e20) Negative feelings scale (0e16) e NA Easy Free Hypothesis testing Subjective Stress Scale Cossette, 1993 [49] Sexton, 1985 [65] Chapman, 1966 [101] 4 items 4-point scale 4e16 e NA Easy Free Internal consistency, hypothesis testing Zarit Burden Interview Badr, 2016 [51] Cain, 2000 [52] Fried, 2005 [53] Garlo, 2010 [22] GodoyRamírez, 2014 [18] Goris, 2016 [54] Schreiner, 2006 [44] Sorocco, 2013 [35] Takata, 2008 [55] Washio, 2003 [46] Wicks, 1997 [56] Zarit, 1980 [102] Zarit, 1985 [103] 22 items 5-point scale 0e88 e NA Easy Free/ Not free ...
Background
Increasing symptoms and activity restriction associated with COPD progression greatly impact on the lives of their informal caregivers, who play a vital role in maintaining their health. An understanding of this impact is important for clinicians to support caregivers and maintain a viable patient environment at home. This systematic review aimed to identify the instruments commonly used to assess informal caregiving in COPD and describe their measurement properties in this population.
Methods
Searches were conducted in PubMed, Scopus, Web of Science, CINAHL and PsycINFO and in references of key articles, until November 2016 (PROSPERO: CRD42016041401). Instruments used to assess the impact of COPD on caregivers were identified and their properties described. Quality of studies was rated using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. Quality of the measurement properties of instruments was rated as ‘positive’, ‘negative’ or ‘indeterminate’.
Results
Patients cared for, had moderate to very severe COPD and the sample of caregivers ranged from 24 to 406. Thirty-five instruments were used in fifty studies to assess caregivers' psychological status and mood (9 instruments), burden/distress (12 instruments), quality of life (5 instruments) or other (9 instruments). Eighteen studies assessed the measurement properties of 21 instruments, most commonly hypothesis testing (known validity) and internal consistency. Study quality varied from ‘poor’ to ‘fair’ and with many properties rated as ‘indeterminate’.
Conclusions
Although several instruments have been used to assess the impact of COPD on caregivers, an increased understanding of their properties is needed before their widespread implementation.
... A wide range of outcomes were assessed. The most commonly reported outcomes included multi-domain constructs of caregiver burden measured using scales such as the Zarit Burden Interview and Caregiver Burden Inventory (11 studies, (34-36, 38, 39, 46, 51-53, 55, 56)); psychological outcomes such as depression, anxiety and stress (eight studies, (34,37,43,44,46,50,51,56)); social support (five studies, (34,43,46,50,52)); quality of life (five studies, (36,44,46,49,52)); and financial or employment burdens (five studies, (35,45,54,56,58)). Only two studies explored unmet needs (53,57). ...
... A wide range of outcomes were assessed. The most commonly reported outcomes included multi-domain constructs of caregiver burden measured using scales such as the Zarit Burden Interview and Caregiver Burden Inventory (11 studies, (34-36, 38, 39, 46, 51-53, 55, 56)); psychological outcomes such as depression, anxiety and stress (eight studies, (34,37,43,44,46,50,51,56)); social support (five studies, (34,43,46,50,52)); quality of life (five studies, (36,44,46,49,52)); and financial or employment burdens (five studies, (35,45,54,56,58)). Only two studies explored unmet needs (53,57). ...
... Four studies (40,44,51,55) measured the patient demographic, disease or psychosocial characteristics which were associated with caregiver burden. Five studies (39,46,49,50,52) included assessment of both patient and caregiver characteristics which were associated with caregiver burden. ...
Caregivers of individuals with chronic obstructive pulmonary disease (COPD) experience significant burden. To develop effective interventions to support this vulnerable group, it is necessary to understand how this burden varies as a function of patient well-being and across the illness trajectory. This systematic review aimed to identify the number and type of data-based publications exploring the burden and unmet needs of caregivers of individuals with COPD. Medline, Embase, PsycINFO and Cochrane databases were searched for studies published between January 2000 and February 2014. Studies were eligible if they were quantitative studies examining unmet needs of, or burden on, adult caregivers of individuals with COPD. Eligible papers were categorised according to (i) type (i.e. descriptive, measurement and intervention studies); (ii) whether they measured associations between patient and caregiver burden and (iii) whether they measured caregiver burden longitudinally. Twenty-seven data-based papers met criteria for inclusion. There was a significant increase in the total number of publications over time. The majority of publications were descriptive studies (n = 25), with one measurement and one intervention study identified. Fourteen descriptive studies measured the relationship between patient or caregiver factors and caregiver burden. Only two studies measured caregiver burden over time. There are a number of gaps in the body of research examining burden and unmet needs of caregivers of individuals with COPD that preclude the development of effective interventions for this population. Greater research effort should be directed towards identifying rigorous measurement tools which more accurately characterise caregiver burden, so that evidence-based interventions can be developed.
... Not only do many caregivers work outside of the home, they continue working within the home (Saunders, 2010). These changes within the caregiver's life may leave them feeling resentful and burdened on top of the already stressful task of taking care of their loved one (Aldred et al., 2005;Nordtug & Holen, 2011;Spence et al., 2008). Caregivers identified negative role changes such as taking on multiple roles (e.g., wife, husband, daughter, son, sibling, nurse, doctor, etc.;Harris, 2007;Spence et al., 2008) and undertaking tasks that were previously the responsibility of the current client (e.g., housework and cooking for many men, gardening and house maintenance for many women, or managing all household finances; Bennett et al., 2004;Hasson et al., 2008;Hwang, Luttik, Dracup, & Jaarsma, 2010). ...
... Caregivers' behaviour, performance, cognitive, communication, emotional, and social factors have a significant impact on how the client is cared for at home, and thus should be considered as concepts within this class. Caregivers must take on multiple roles [58,59]; experience changes in family dynamics and boundaries [60,61]; and face an increasing work load in caring for a loved one (see Table 1 for a list of responsibilities described in the literature that caregivers are expected to take on) on top of their existing responsibilities and employment [31,59,62,63]. Assuming these roles and responsibilities can lead to frustration, resentment, anxiety, stress, exhaustion, and declining health [30,35,[64][65][66]. ...
Background
Homecare is a growth enterprise. The nature of the care provided in the home is growing in complexity. This growth has necessitated both examination and generation of evidence around patient safety in homecare. The purpose of this paper is to examine the findings of a recent scoping review of the homecare literature 2004-2011 using the World Health Organization International Classification for Patient Safety (ICPS), which was developed for use across all care settings, and discuss the utility of the ICPS in the home setting. The scoping review focused on Chronic Obstructive Pulmonary Disease (COPD), and Congestive Heart Failure (CHF); two chronic illnesses commonly managed at home and that represent frequent hospital readmissions. The scoping review identified seven safety markers for homecare: Medication mania; Home alone; A fixed agenda in a foreign language; Strangers in the home; The butcher, the baker, the candlestick maker; Out of pocket: the cost of caring at home; and My health for yours: declining caregiver health.
Methods
The safety markers from the scoping review were mapped to the 10 ICPS high-level classes that comprise 48 concepts and address the continuum of health care: Incident Type, Patient Outcomes, Patient Characteristics, Incident Characteristics, Contributing Factors/Hazards, Organizational Outcomes, Detection, Mitigating Factors, Ameliorating Actions, and Actions Taken to Reduce Risk.
Results
Safety markers identified in the scoping review of the homecare literature mapped to three of the ten ICPS classes: Incident Characteristics, Contributing Factors, and Patient Outcomes.
Conclusion
The ICPS does have applicability to the homecare setting, however there were aspects of safety that were overlooked. A notable example is that the health of the caregiver is inextricably linked to the wellbeing of the patient within the homecare setting. The current concepts within the ICPS classes do not capture this, nor do they capture how care responsibilities are shared among patients, caregivers, and providers.
... These changes within the caregiver's life may leave them feeling resentful and burdened on top of the already stressful task of taking care of their loved one (Aldred et al., 2005;Nordtug & Holen, 2011;Spence, Hasson, Waldron, Kernohan, McLaughlin, Cochrane et al., 2008). ...
Safety in home care is a new research frontier, and one in which demand for services continues to rise. A scoping review of the home care literature on chronic obstructive pulmonary disease and congestive heart failure was thus completed to identify safety markers that could serve to develop our understanding of safety in this sector. Results generated seven safety markers: (a) Home alone; (b) A fixed agenda in a foreign language; (c) Strangers in the home; (d) The butcher, the baker, the candlestick maker; (e) Medication mania; (f) Out of pocket: The cost of caring at home; and (g) My health for yours: Declining caregiver health.
