Psychosocial vulnerability among carers of persons living with a chronic illness: A scoping review

Aloweni et al. (2019) Most caregivers were female, mean age 69, mean years of marriage 43 and total duration of caregiving ranged from 6 months to 29 years. Only 12% had caregiver training and 13% had a helper to assist with caregiving duties. 39% performed specialized nursing tasks such as changing of UC (urinary catheter) bags, operating a peritoneal dialysis machine, changing stoma bags and wound dressings. None used respite services and only one used day care services. Caregivers with HPLN (high positive, low negative) had lower perceived stress than LPHN (low positive high negative) caregivers. Caregivers with HPLN had a better relationship with their spouse and a higher life satisfaction which demonstrates the importance of relationship quality in reducing the negative effects of caregiving and increasing satisfaction in the caregiving role. Caregivers with HPLN had lower anxiety. Conditional happiness is related to negative perceptions of caregiving. By paying attention to caregivers' description of their experience HCP (health care professional) can identify those at risk to negative reactions to caregiving. Individual perception of vulnerability. Relationship dynamic impacts on vulnerability. Socioeconomic status. Carer health. Length of time caring. Carers are performing specialized nursing tasks highlighting the need for training by specialist nurses. Awadalla et al. (2006) Caregivers were typically more likely to be women, married, of lower educational status and unemployed. Satisfied with strengths of their society, support from friends, personal relationships and personal strengths and moderately satisfied on life of lower educational status and unemployed. Caregivers who were married and in medium-high skill employment had better QOL (quality of life). Patient's age and duration of illness is positively associated with caregiver QOL. Caregivers who were siblings and spouses had lower QOL. The most important predictor of caregiver QOL was the caregiver's appraisal of the patient's QOL. Caregivers who are younger, unemployed, have little education and with the illness in the early stages with the caregivers having medical problems were more vulnerable to poor QOL. Social determinants influence vulnerability. Employment positively affects caregiver wellbeing. Relationship dynamics impact vulnerability. Nurses need to complete a holistic family centric assessment to identify those carers at risk. Badr et al. (2017) Most caregivers who participated were female of ethnic minority and spouse or son or daughter of the patient. Length of time caregiving 1–7 years. Many (47%) described their health as excellent, but current smokers were likely to be more depressed. Higher levels of depression associated with high caregiver burden in the context of COPD (chronic obstructive pulmonary disease) and women caregivers are at increased risk for depression when their partners are depressed. The influence of the dyadic relationship on caregiver outcome. Women caregivers more susceptible to vulnerability. The mental wellbeing of the care recipient influences the mental health of the caregiver. Social determinants influence vulnerability. Increased level of burden and poorer general health associated with depression in both. Collaboration with the carer is vital to ensure better outcomes for the patient and carer. As part of nursing care, assessment of the informal carers' coping may be vital to ensure the best outcomes. Bagheri et al. (2019) The family-centred empowerment tool can strengthen the family to endure the burden of care by focusing on increased knowledge and awareness and managing problem solving in confronting with the problems of chronic patients. The empowerment model can help change the attitudes of care givers regarding disease symptoms as well behavioural signs and physical strain while promoting QOL and self-efficacy. The family-centred empowerment model training can reduce the burden of care among caregivers. Resources can influence empowerment Nurses are in a position to empower families through training. Baanders and Heijmans (2007) Many (40%) felt a strain on personal life but intrinsically rewarded. Personal strain increases when the patient's disease is accompanied by physical, social and mental impairments and fatigue. Also increased for partners of patients with cancer and for unemployed women. Most carers are without professional help. For women and those working, social impact increased. Financial burden increases for partners of patients with physical and social impairments. Where one partner unemployed or both, financial burden increased. The consequences of a chronic disease on a partner's life. What affects the partner's physical and psychological wellbeing? Social determinants influence vulnerability. Life changes. Carer wellbeing. Resource availability Nurses should assess carers for their risk of burden regularly.

Blank (2018)

Many (43%) had cared for >5 years. The majority were caregiving for a spouse. Most (67%) reported their health as good. All care recipients were >60 years of age with conditions such as Alzheimer's/dementia and Parkinson's. Personal resources promoting self-care included acknowledging strength seeking solace and opening to potential. Caregivers reached back through their memories, recalling past strength as providing a path for moving forward in their care giving role. Seeking solace emerged as an opportunity for comfort and inner strength including approaches to life such as humour, faith, spirituality, prayer, blessing rituals and church attendance. Solace was found within the caregiver as well as reaching out. Caregivers constructed a new sense of who they were in the role of caregiver, some struggled others spoke of adversity, resilience and strength. Engaging socially in life took new meaning for new caregivers. Participants often turned to family members of friends for support relevant to health and wellbeing. Support included offers of assistance, emotional and instrumental support. Some experienced isolation. Caregivers found comfort with others experiencing a similar situation. Informal caregivers shared the process of empowerment in the themes of seeking meaning, living values and accepting self. The health empowerment theory perspective provided a relevant basis for theory based intervention focused on promoting strengths, abilities, and potential among older adults, limiting vulnerability, to diminished health and wellbeing. Vulnerability was determined on an individual level through the use of their own personal resources. Empowerment influences levels of vulnerability, sought and added through social support and inner self. Life changes. Relational dynamics. Engagement with caregivers and promotion of wellness and psychosocial support within this population is needed. Carter (2010) Caregivers more likely to be female. No significant correlation between care giving and self-reported health and happiness. Unemployment associated with depression. Caregiving alone is not related to family member wellbeing. Being employed is related to more positive reports of health. Caring for more than one family member is related to lower reports of health. The house hold structure (single headed or not) was directly related to depression and self-reported health. The vulnerabilities posed by competing demands of employment, caring for young children, and caring for more than 1 chronically ill individual are significantly related to caregiver wellbeing. Resources such as household structure inform available supports to aid the caregiver and vulnerabilities in the form of competing demands may result in increasing caregiver strain. Vulnerability associated with social determinants. Resource availability has a significant effect on levels of vulnerability. Community based nurse practitioners and primary care nurses are ideally placed to improve carer outcomes. Crossen-Powell (1993) Significant relationships appear to exist between burden and certain variables, i.e. appraised severity of stressors, certainly personality traits and the availability of social supports and the willingness to use these supports. Personal vulnerability has an association with burden. Vulnerability is determined by the individual's perception. Influenced by resource availability. Nurses should ask carers about their personal perceptions of vulnerability and views on accessing available supports. Di Stasio et al. (2020) A direct association between the SVS (stress-related vulnerability scale) scale and the perception of the usefulness of interventions was detected and significant differences were observed for caregivers' tele support group, peer led support interventions suggesting an important role for caregivers' support interventions suggesting an important role for caregivers. Caregivers are split between low vulnerability, with minimal perception of training need and high burden state with the acute necessity of support to manage patients. The more stressed and involved in care the higher the need for help. The higher the level of care the more vulnerable a carer is. Resources have an impact on caregiver wellbeing. Nurse led interventions should be targeted at those in need of most support. Ficker (2010) Vast majority of caregivers were daughters. Most caregivers were caring for their parents and grandparents. All of the caregivers lived with the carers. Minority caregivers were less educated, participated in caregiving for a longer amount of time and had more people in the household. Employment was associated with being younger and more educated. Many (41%) reported that they had reduced hours or quit working due to caring. Caregiving housewives tended to have more physical health problems than those working fulltime. Unemployed caregivers tended to have more health problems than those working or retired. Higher income was associated with being employed. Those caregivers who identified as unemployed or home makers were more at risk for depression. The caregiver's ability to engage in pleasant events was associated with ADL impairment of care recipient and the caregivers' number of physical health conditions. Higher engagement in leisure activities was associated with less depression. Work disruption leads to financial strain which reduces leisure activities in caregivers which leads to a lack of positive affect for caregiving and increased depression. Employment plays a role preventing role engulfment. Unemployed and homemaker caregivers were more vulnerable to mental and physical health problems. Women caregivers more susceptible to vulnerability. Social determinants influence vulnerability. Resource or social activities determine level of vulnerability. Carer wellbeing. Loss of self. As part of their assessment, nurses should ask carers about their feelings of wellbeing generally and what contributes to their wellbeing. Hussain et al. (2018) Carers were aware of social supports available to them but did not access them leaving them vulnerable to marginalization. Access to support services were also rarely accessed due to inaccessibility, poor timing and a lack of anonymity. Barriers to the provision of care in rural areas: Significant impact associated with travel requirements to assist with care and the impact of care provision on the carers own personal health. Employment consequences were associated with inflexibility and limited job options. Problems associated with employment resulted in financial pressures and associated personal stress and anxiety for caregivers Rural caregivers are more vulnerable to marginalization Vulnerability is determined by resource availability and social determinants. Loss of empowerment. A comprehensive holistic approach to support those proving long-term care at home is vital. Carers' education needs should focus on nonclinical knowledge and skills; such as communication with the family, patient and wider healthcare team. Kempson and Conley (2009) Participants were willing to learn and provide massage for their loved ones. Providing the massage was not burdensome and suggested that it made them feel better because they could do this for a loved one. Providing massage was calming and relaxing. Providing massage was a mechanism for the establishment of personal and physical connection between the caregiver and the care recipient. The administration of massage enabled caregivers to do something beneficial for their loved ones on a personal level. Incorporation of caregiver massage is very much in keeping with the values of social work regarding empowerment of vulnerable populations and a strengths perspective. It may also enhance rural caregivers' perceptions of self-efficacy and self-agency and thus possibly reduce caregiver vulnerability. Relationship dynamic impact on vulnerability. Individual perception of vulnerability. Empowerment influences levels of vulnerability, sought and added through social support and inner self. Nurses are in a position to empower families through training. Kenny et al. (2014) Carers were older than noncarers. Carers had lower work force participation than noncarers and were mainly female. A higher proportion of caregivers were also married or had a partner. A higher proportion of caregivers had a pre-existing condition than noncaregivers. Longer caregiving was associated with worsening physical health. Females reported early and negative impacts on health whilst males reported this after a longer time. Providing care for > 20 hours per week was associated with negative physical and mental health in the short and long terms. Higher working hours before caregiving was associated with substantial deterioration in physical health in the shorter term for female high care givers. Higher current working hours were associated with deterioration in mental health. Informal caregivers providing high levels of care are at risk of substantial negative impacts on health. Working carers providing a high level of care represent a vulnerable sub group where supportive and preventative services need to be focused. The higher the level of care the more vulnerable a carer is. Women caregivers more susceptible to vulnerability. Relational dynamics. Nurses should assess the level of care delivery by carers regularly to identify vulnerable carers. Mills et al. (1999) Vulnerable caregivers had 60% fewer l selectin negative cd8 + t cells but no difference in cd8 + cd62l + cells at rest. The resting plasma epinephrine levels were 44% higher in vulnerable caregivers compared to nonvulnerable caregivers. There is functional immune deficits in elderly caregivers of patients with AD and suggests the identity of specific lymphocyte subsets related to this phenomenon. Physical vulnerability of caring Provides evidence of the adverse physical effects on carers and the importance of a family centric model of care in nursing. Mills et al. (2004) Vulnerable caregivers had reduced b2 adrenergic receptor sensitivity and density when compared with their nonvulnerable counterparts or with noncaregivers. Vulnerable caregivers had more symptoms of depression than noncare givers. Vulnerable caregivers had lower b2 adrenergic receptor sensitivity than noncaregivers. Development of criteria to identify those caregivers who experience a disproportionate amount of stress compared to those carers who have adequate resources to meet the demands of their care giving. Demonstrate the sympathetic and immune difference in vulnerable versus non vulnerable caregivers. These findings may demonstrate functional immune deficits in highly stressed carers of AD (Alzheimer's disease) patients. Physical vulnerability of caring Provides evidence of the adverse physical effects on carers and the importance of a family centric model of care in nursing. Ben Mortenson et al. (2018) The functional autonomy of AT (assistive technology) users in the experimental and comparison group did not differ significantly. AT users showed significant decline over time in daily activity and mobile related functional autonomy. Family caregivers in the experimental group did not show significant reductions in their frequency of perceived physical and psychological burden associated with problematic activities compared to the comparison group. Overall caregiver burden was not significantly different between the two. There may be beneficial effects to AT provision involving care givers in the process. Resources such as assistive technology do not influence autonomy or empowerment. Nurses are in a position to source suitable resources and strategies for caregivers to influence their autonomy and empowerment. Navaie-Waliser et al. (2002) Many (36%) were in fair or poor health or had a serious health condition. Vulnerable caregivers were more likely to be greater than 65 years old, female, married have less than secondary education and be primary caregivers. Vulnerable caregivers were more likely be providing bathing, dressing, and transferring than nonvulnerable. Vulnerable caregivers were more likely to make phone calls on behalf of the care recipient, manage the care recipients' finance, and help the care recipient obtain assistance from government programs. Vulnerable caregivers were also more likely to be providing > 20 hours per week of care giving, to experience difficulty in providing care, to have unmet needs in providing care, suffered physical health since becoming a caregiver and less likely to be employed. Reliance on caregivers to provide care without considering the caregivers ability to provide care can create a stressful and potentially unsafe environment for the caregiver and the care recipient. These findings signal a need to provide a broader range of accessible, affordable, innovative services and programs that lend support to family caregivers in their roles. Level of care influences vulnerability. Physical vulnerability of caring. Nurses should assess the level of care delivery by carers regularly to identify vulnerable caregivers. Rivers (2016) Dyadic adjustment was negatively associated with caregiver burden such that as dyadic adjustment increases, caregiver burden decreases. Male carers may benefit the most from interventions to improve dyadic adjustments. Lower caregiver burden was associated with reduced depression, improved general mental health and improved satisfaction with life. Receiving social support may have benefits that are more positive for male caregivers than female caregivers. Lower caregiver burden and higher perceived social support were associated with reduced depression, improved general mental health and improved satisfaction with life. Engagement in MS (multiple sclerosis) related volunteer work was significantly associated with altruism and satisfaction with life. Most (93%) endorsed at least one traumatic event. The more stressful life events participants experienced the worse PTSD (posttraumatic stress disorder) symptoms and depression they experienced. 17.3% met criteria for PTSD and was perceived to be much higher in this population compared to other caregivers. >25% met the criteria for sub clinical PTSD symptoms. Probable PTSD diagnosis was significantly correlated with anticipatory grief and general mental health such that participants with probable PTSD had higher anticipatory grief and worse general mental health. There was a low endorsement of drug and alcohol use. MS spouse/partner caregivers experience significant caregiver. Burden, a host of negative mental and physical health impairments and they find benefit and protection through a range of several psychosocial factors. Level of care influences vulnerability. Individual perception of vulnerability. Psychological. Isolation. Empowerment Identifies importance of nurses promoting a quality relationship between the carer and care recipient. Simpson et al. (2010) Loss of intimate relationships/identity:” duty to care” no longer the person they once loved disease-related demands: Worsening illness worsened distress and relational dynamics caregiving vulnerability risk increases with previous hx of relational stress, conflict, instability and co-existence of social determinant: Poverty, low education and co existing health conditions. One day at a time approach: Finding a balance between caregiver burden and coping. Substantial caregiver vulnerability in terms of an imbalance between burden and coping capacity. Interventions should address coping facilitators and barriers as disease advances it is a downward spiral for carers. Loss of empowerment as the disease progresses. Psychosocial vulnerability influenced by level of burden and the disease-related demands. As well as the relationship between the caregiver and recipient. Vulnerability associated with social determinants. As part of holistic assessment, nurses can identify carers' need for psychosocial support. Tartaglini et al. (2014) 48% of the sample experienced unfavourable changes in their health and condition of a being a caregiver somehow predicted the changes. 85% of the caregivers went through physical disturbances, however there was no differences between self-perception of caregivers versus non care givers health wise The caregiver suffers unfavourable health effects despite not sometimes being aware of the negative consequences. Family caregivers are often “hidden patients” health services should promote psycho educational services and diagnose for proper pharmacological treatment of depression and anxiety. Caregivers are vulnerable to physical and psychological problems. Isolation. Social determinants influence vulnerability. As part of holistic assessment, nurses can identify adverse effects on carers' health. Trivedi et al. (2014) Caregivers frequently reported chronic health problems A greater proportion of caregivers than noncaregivers were women, out of work for a year more carers were white or Hispanic race. Most caregivers report <15 days of poor mental health per month and their overall health was good. Most caregivers reported that they received the necessary social and emotional support and more than half of carers received the recommend amount of sleep. Caregivers are more likely than noncaregivers to have poor mental health, low social support and inadequate sleep which can lead to poor QOL. Being a caregiver may increase vulnerability to poor QOL. Vulnerability is determined by social determinants. Caregivers more susceptible to health issues. Women caregivers more susceptible to vulnerability. Nurses should assess the level of care delivery by carers regularly to identify vulnerable caregivers. Von Känel et al. (2019) Most caregivers reported good health. Higher levels of physical health problems, lower caregiver physical function and more negative affect differentiated caregivers with poor/fair SRH (self-rated health) from those with good SRH. Less physical activity and less alcohol consumption differentiated caregivers with poor/fair SRH to those with good and excellent SRH. Moreover higher BMI (body mass index) and lower positive affect differentiated caregivers with poor/fair SRH from those with excellent SRH. Higher total caregiving stress was associated with younger age, better physical function and more negative effect. Greater care recipient dementia was associated with higher BMI, less alcohol and more social support. Greater care recipient functional impairment was associated with less alcohol consumption and better caregiver physical function. Higher perceived caregiver burden was associated with male and younger Poor/fair SRH v at least good SRH reflects an inclusive measure of low physical and mental health as well as caregiving specific stress in dementia caregivers. Screening for poor/fair SRH may be valuable in identifying care givers at risk of adverse outcomes. A better poor/fair SRH may prompt target interventions aimed at understanding of improving SRH in the most vulnerable caregivers. Caregivers with poor SRH levels were more vulnerable to less physical activity, higher BMI and younger age. Level of care influences vulnerability. Carer wellbeing. Provides evidence of the physical toll of caring on the carer and the importance of a family centric model of care in nursing. Yildiz et al. (2017) Caregivers of patients with cancer have moderate levels of self-efficacy and caregiver burden. There is a significant negative relationship between self-efficacy and burden of care. The provision of psychosocial support and the organization of activities and programs to increase self-efficacy levels of care giving family members should be incorporated into nursing interventions. Level of care influences vulnerability. SES (socio economic status). Demographics and health and wellbeing Incorporating family into nursing interventions has potential to influence carers' self-efficacy.

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