Perspectives of elderly people receiving home help on health, care and quality of life

From a nursing perspective it is important to have information about the type of care needed, the reasons care is needed and quality of life among the most elderly people living in their own homes, in order to support their independence and maximise their quality of life. Thus a study was performed to investigate people aged 75 years and older dependent on care from professionals and/or a next of kin, their functional health, diseases, and complaints in relation to quality of life as perceived by themselves. The sample (n = 448) comprised those who, in an age-stratified randomised sample of adults living in their own homes, responded that they were dependent on help from others. The questionnaire covered sex, age, living conditions, civil status and number of children and cohabitation, respondents' health, diseases, quality of life, help from another person, and the type and amount of help received. The number of elderly persons dependent on help ranged from 18.5 to 79.1% in the different age groups. The help came mainly from informal carers (84.1%), and, in 53.1% of cases, from the home help service and home nursing care. Help from formal caregivers was given in combination with that from a next of kin in 38.8% of the cases. More next of kin than formal carers helped in all Instrumental Activities of Daily Living (IADL) and Personal Activities of Daily Living (PADL) tasks, with the exception of cleaning the house and providing a bath/shower. Although the respondents received help themselves, they also helped another person in 6.5% of cases. The elderly reported a median of three diseases and ten different complaints of which pain and impaired mobility were the most frequent. Between 20 and 40% of the respondents in the different age groups reported restricted ability to be alone and one third of them reported low or very low quality of life. Multiple linear regression analysis showed the number of complaints, restricted ability to be alone, living alone and age to have a significant relationship on low quality of life.     

Expectations of support among White British and Asian-Indian older people in Britain: the interdependence of formal and informal spheres

The discourse surrounding community care characterises informal support being superior to and preferred over formal sources of support, with this distinction buttressed by policy changes. There is a lack of understanding of the interdependence of both spheres of support. This article argues that an individual's experience and expectation of one type of support is often made in relation to his or her understanding, expectation and experience of other sources of support. There is also an urgent need to understand how these associations operate in a cross‐cultural context as it is naïve to assume that normative expectations will remain constant when the relationship between family, state and other sources of support are unstable. This article reports on findings emerging from part of a Growing Older study funded by the Economic and Social Research Council of Great Britain to explore the relationship between quality of life and the social networks and support of older people from different ethnic groups. Research involved the use of a questionnaire comprising closed‐ and open‐ended questions. In addition, in‐depth qualitative interviews covering the existence and nature of social networks and support, as well as perceptions and expectations of these, were also conducted. This article reports on data relating to a sample comprising seven White British men, 10 White British women, 12 Asian‐Indian men, and nine Asian‐Indian women aged 55 and over derived from the Family Resources Survey. Findings reveal that the high level of expectation for family support amongst Asian‐Indian respondents coexists with a high level of expectation for state support and an acknowledgement that the ideal of family support may not always materialise. Amongst White British respondents, the high level of expectation for state support exists regardless of whether the respondent has satisfactory informal social networks. This expectation is commonly expressed in terms of rights and entitlement by White British respondents but not by Asian‐Indians. Associated with this, Asian‐Indian respondents display a consistently lower level of awareness and usage of a range of health and social care services. Regardless of the extent of current and past usage of services, however, respondents from both groups overwhelmingly indicate an expectation for the continued provision of such services as they would like to be able to use one or more of these at some stage.     

Health and functioning among elderly recipients of home help in Norway

We used data on respondents 60 years of age and above (n= 2111,54% women) from a nationwide Norwegian health survey. In all, 186 (8.8%) of the respondents received home help. The data demonstrate that home help tends to be provided as a supplement to formal care, i.e. home nursing, as well as to informal support from relatives, neighbours and friends. High age, being of female gender and living alone were strongly associated with the provision of home help in bivariate analyses. A negative relationship existed between income and receiving home help, but this association only existed for subjects under 70 years of age. The home help clients, more frequently than those without home help, reported having functional problems, suffering from chronic illnesses, and consulting a doctor due to disease. They also reported poorer self-perceived health, more frequent symptoms of depression or anxiety, and more frequent loneliness. Multivariate analyses identified age, impaired ability to do housework, living alone, difficulties in using public transportation, poor perceived health and suffering from chronic illnesses or impairments as explanatory variables for being a recipient of home help. The results demonstrate that the home help clients represent a particularly frail group of elderly people.     

A review of self‐rated generic quality of life instruments used among older patients receiving home care nursing

In the last two decades, quality of life and health‐related quality of life have become commonly used outcome measures in the large number of studies evaluating healthcare and home care nursing. The objective of this systematic search and review was to evaluate studies that include self‐rated generic quality of life instrument used among elderly patients receiving home care nursing. Searches were conducted in Medline, Embase, PsycINFO and Cinahl for articles published between January 2005 and June 2016, with 17 studies in eight countries meeting the inclusion criteria and assessed for quality. Overall, the review shows great variations in the included studies regarding characteristics of the participants and place of origin, the generic quality of life instruments applied and their dimensions. In this review, we raise the question of whether the generic questionnaires used to measure quality of life do in fact measure what is essential for quality of life in elderly users of home care nursing. The psychological and physical dimensions of quality of life were assessed in almost all included studies, while older‐specific dimensions like autonomy, control and sensation were less frequently assessed. There is reason to believe that generic quality of life instruments frequently do not capture the dimensions that are most important for elderly people with health problems in need of home care nursing.     

Activities of daily living, cognitive impairment and other psychological symptoms among elderly recipients of home help

Previous studies have shown a relationship between physical functioning and having home help. The hypothesis behind this study, carried out on a random community sample of 168 subjects aged 75 years and above, was that having home help would also be associated with cognitive impairment and psychological symptoms. Bivariate analysis showed that cognitive impairment was significantly more frequent among home help clients, whereas indicators of anxiety and depression were not. After multivariate adjustment, living alone, poor perceived health, problems in performing primary activities of daily living (ADL), instrumental ADL and, in particular, experiencing difficulties in cleaning the house remained the only variables independently related to having home help. Of these, difficulties with cleaning the house was the most powerful predictor. The home help seems to be used mainly to compensate for impaired mobility. An association between cognitive functioning and the provision of home help is related to a limitation in the ability to perform ADL associated with cognitive impairment.     

Quality of life among Iranian refugees resettled in Sweden

The relationships between quality of life, psychopathological manifestations and coping related variables (coping resources, social support, sense of coherence) were examined among individuals who have perceived several severe traumata. One hundred Iranian refugees resettled in Sweden have been investigated by the Symptom Checklist (SCL-90-R), the Beck Depression Inventory (BDI), the Coping Resources Inventory (CRI), and the Interview Schedule for Social Interaction (ISSI), the Sense of Coherence Scale (SOC), and the WHOQoL-100 questionnaire in a cross-sectional study. Individuals, traumatized by combat experiences as a soldier during the war, with low BDI scores showed on average the significantly highest overall quality of life, the best physical health, the highest scores according to the sense of coherence most pronounced for "Meaningfulness," and the best availability of social integration compared to participants who did not had these experiences in combats and those with the experience but scored high in the BDI. Quality of life, coping resources, and social support were found closely related to psychopathological manifestations. Motivational orientations (highly developed Meaningfulness-SOC) and various coping competencies probably enable some traumatized individuals to resist against several traumata and to live in a good quality of life without psychopathological disturbances.     

Impact of infusion frequency on quality of life in patients receiving home parenteral nutrition

Home parenteral nutrition (HPN) may be needed as a long-term therapy for patients with chronic intestinal failure whose clinical condition does not allow complete weaning of the parenteral nutrition (PN) solution. HPN is a time-consuming and clinically complex therapy and can negatively affect quality of life (QOL). The level of dependency on HPN, specifically, infusion frequency, has been proposed as a factor that may have an effect on QOL in patients receiving HPN. The primary aim of this qualitative review is to identify the impact of HPN frequency (days per week of HPN infusion) on QOL measurements in adult patients receiving HPN. A comprehensive literature search was completed in PubMed and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases. Primary clinical research studies were included if they were conducted in adult patients receiving HPN and included the assessment of the associations between the frequency of HPN infusion and QOL measurements. Six articles ultimately met the criteria for this review. There was variability among the studies, including use of different tools to measure QOL. However, all six studies suggest that a reduction in HPN frequency may be associated with an improvement in QOL. Whenever patients’ clinical situation allows, a reduction in HPN frequency should be considered to improve QOL in patients receiving HPN.     

Ageism,resilience, coping,family support,and quality of life among older people living with HIV/AIDS in Nanning,China

Although the HIV epidemic continues to spread among older adults over 50 years old in China, little empirical research has investigated the interrelationships among ageism, adaptability, family support, and quality of life among older people living with HIV/AIDS (PLWHAs). In this cross-sectional study, among 197 older PLWHAs over 50 years old, path analytic modelling was used to assess the interrelationships among ageism, resilience, coping, family support, and quality of life. Compared with female PLWHAs, male PLWHAs had a higher level of resilience and coping. There were no significant differences in the scores of quality of life, ageism, family support, HIV knowledge, and duration since HIV diagnosis between males and females. The following relationships were statistically significant in the path analysis: (1) family support → resilience [β (standardised coefficient)?=?0.18], (2) resilience → ageism (β?=??0.29), (3) resilience → coping (β?=?0.48), and (4) coping → quality of life (β?=?0.24). In addition, male PLWHAs were more resilient than female PLWHAs (β?=?0.16). The findings indicate that older PLWHAs do not only negatively accept adversity, but build their adaptability to positively manage the challenges. Family-based interventions need take this adaptability to adversity into consideration.     

艾滋病病毒感染者生活质量与相关耻辱的关系

目的探讨艾滋病病毒感染者和病人的生活质量与耻辱的关系。方法对215名艾滋病病毒感染者和病人进行匿名问卷调查,采用WHO生活质量简表中文版和BergerHIV耻辱量表测定调查对象的生活质量和感受到的耻辱,对其生活质量和艾滋病相关耻辱感进行典则相关分析。结果艾滋病病毒感染者和病人生活质量各个维度的平均得分为50.74(生理领域)、46.01(心理领域)、53.78(社会关系领域)和43.94(环境领域);耻辱4个维度的得分为49.89(个人耻辱)、29.77(担心公开)、35.18(负面自我印象)和57.80(关注公众态度)。典则相关分析结果显示,自我负面印象和心理领域分别是耻辱和生活质量中起主要作用的因素,两者呈负相关,相关系数为0.4938(P<0.05)。结论艾滋病病毒感染者和病人的负面自我印象越小,生活质量心理方面越好。     

Quality of life and psychosocial well-being among children living with HIV at a care home in Southern India

This study was designed to evaluate the quality of life (QOL) of children living with HIV at an institutional care home in Bangalore, India. The Sneha Care Home is a unique residence that provides educational and community support with a focus on physical, nutritional, medical, and psychological care for orphans and vulnerable children. Cross-sectional health measures and interview data were collected from 97 residents including 52 boys and 45 girls between 5 and 12 years of age (mean age = 9). QOL was measured with the Pediatric Quality of Life 4.0 (PedsQL) Inventory. Caregivers perceived children to have an overall higher QOL than was self-reported by children (total score 83 vs. 78). Our findings indicated self-reported QOL decreased with age of the child, while caregiver-reported QOL increased with age, suggesting a need to ensure greater psychological support for older children. Physical measures showed the children’s clinical severity of disease remained well controlled living in this residential, values-based care home.     

Unmet home healthcare needs and quality of life in cancer patients: a hospital‐based Turkish sample

Home healthcare services in Turkey are provided primarily to patients that are bedridden or seriously disabled. There are no such services integrated with hospital services that are specifically designed for cancer patients. The present study aimed to explore the home healthcare needs of cancer patients and their experiences related to unmet home healthcare needs. The study included 394 adult cancer patients who were followed up at the surgical oncology department of a university hospital. A 37‐item, study‐specific questionnaire and the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire for cancer patients (EORTC‐QLQ‐C30) were administered, and patient clinical records were evaluated. Home healthcare was provided primarily by the patients' immediate family members; the professional home healthcare usage rate was only 2.8%. Patient quality of life (QoL) was negatively affected by cancer, especially those with stage three and four disease. The frequency of the need for home healthcare services due to disease‐related health problems during the 30 days prior to administration of the questionnaires was as follows: pain (62.9%), surgical wound care (44.9%), injection of therapeutics (52.3%), gastrointestinal complaints (51.8%), anxiety (87.1%), psychosocial assistance (77.2%) and information about cancer (94.4%). In the absence of home healthcare services, the patients primarily used institutional healthcare services to meet their needs; otherwise, their needs were not met. The physical and psychosocial problems that cancer patients experience could be solved in most cases by professional home healthcare services. Hospital‐integrated home healthcare services might not only improve cancer patient QoL but might also increase the effectiveness of hospital‐based healthcare services.     

Quality of life in older outpatients living alone in the community in Italy

There is limited knowledge on the relationship between the living conditions of community-dwelling older people and their quality of life (QOL) considered in all its specific domains. The purpose of this study was to determine (1) which dimensions of QOL were independently associated with living alone and (2) the independent correlates of these dimensions of QOL amongst older outpatients. We conducted a cross-sectional survey of 239 community-dwelling outpatients aged 65+ (mean age 81.5 years) consecutively referred to a geriatric medicine clinic in Italy between June and November 2009 (response rate 93%). Subjects underwent a comprehensive geriatric assessment including QOL, which was evaluated by using the Older People's QOL questionnaire. In multivariate logistic regression analyses, living alone was associated with the lowest score-based tertile of two specific dimensions of QOL out of seven, namely 'social relationships and participation' [odds ratio (OR) 2.73, 95% confidence interval (CI) 1.08-6.91] and 'home and neighbourhood' (OR 4.96, 95% CI 1.75-14.07), independently of the main demographic, social, functional and clinical characteristics of the subjects. Amongst the 107 subjects living alone, independent correlates of these dimensions of QOL were depression, having no caregiver and having never been married. Depression, having no caregiver and having never been married could provide a valuable means of identifying older people living alone who are at greater risk of a poor QOL and who would most benefit from effective social and medical interventions.     

Using WHOQOL-BREF to evaluate quality of life among Turkish elders in different residential environments

Objective  This study used the Brief Version of The World Health Organization’s Quality of Life Questionnaire (WHOQOL-BREF) to assess and compare the quality of life in older people who live at home and older people who live in public assisted-living facilities for the elderly. Design  Cross-sectional. Setting  Data were collected by a research nurse in each home and in the assisted living facility. Participants  Participants were 60 years old and older. The sample included 37 people who were living in a public assisted-living facility and 37 elderly people living in their own homes. Measurement  The WHOQOL-BREF was used to measure participants’ quality of life. Results  The groups were similar according to gender, literacy, existence of chronic diseases, and general perceived health. However, quality of life scores for social relationships and environment domains were lower in those living in an assisted living facility than those living in their own homes. The scores for elderly females staying in the assisted living facility were lower compared to the scores of males in the facility. Conclusion  The results suggest that social and environmental domains of life quality are low in elderly assisted living facilities. Social activities should be diversified for elderly people staying in assisted living facilities to improve social relationships. Physical and psychological health of females in assisted living facilities should be comprehensively supported by professionals. Alternatively, elderly people may be professionally supported to live in their own homes.     

Diabetes-Specific or Generic Measures for Health-Related Quality of Life? Evidence from Psychometric Validation of the D-39 and SF-36

Objective:  There is a debate regarding the use of disease-specific versus generic instruments for health-related quality of life (HRQOL) measures. We tested the psychometric properties of HRQOL measures using the Diabetes-39 (D-39) and the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36).
Methods:  This was a cross-sectional study collecting data from 280 patients in Taiwan. Exploratory factor analysis was conducted to evaluate construct validity of the two instruments. Known-groups validity was examined using laboratory indicators (fasting, 2-hour postprandial plasma glucose, and hemoglobin A1c), presence of diabetic complications (retinopathy, nephropathy, neuropathy, diabetic foot disorder, cardiovascular and cerebrovascular disorders), and psychosocial variables (sense of well-being and self-reported diabetes severity). Overall discriminative power of the two instruments was evaluated using the C-statistic.
Results:  Three distinct factors were extracted through factor analysis. These factors tapped all subscales of the D-39, fourphysical subscales of the SF-36, and four mental subscales of the SF-36, respectively. Compared with the SF-36, the D-39 demonstrated superior known-groups validity for 2-hour postprandial plasma glucose groups but was inferior for complication groups. Compared with the SF-36, the D-39 discriminated better between self-reported severity known groups, but was inferior between well-being groups. In overall discriminative power, the D-39 discriminated better between laboratory known groups. The SF-36, however, was superior in discriminating between complication known groups.
Conclusions:  For psychometric properties, the D-39 and the SF-36 were superior to each other in different regards. The combined use of a disease-specific instrument and a generic instrument may be a useful strategy for diabetes HRQOL assessment.     

驻藏官兵生存质量状况及影响因素分析

目的 了解驻藏官兵的生存质量状况及其影响因素。方法 采用随机抽样法,选择驻西藏某部队官兵490名,应用生存质量评定量表简表以及自编影响因素调查表进行问卷调查。结果 驻藏官兵在生存质量生理、心理、社会和环境各领域的得分依次为(64.50±13.91),(59.25±15.11),(59.64±17.82),(49.42±15.23)分,其中环境领域的得分最低,且低于50分的中间界值。对自身生存质量和健康状况的总体评价大多数处于一般和较好的水平。驻藏官兵驻守不同地域、进藏次数、职别、婚姻状况在生存质量的一个或多个领域得分上差异有统计学意义(P<0.05)。驻藏官兵的年龄、入伍时间、驻藏时间、个人经济状况、就业前景、工作强度、与外界的联系、与家人的关系、与异性交往的影响等与生存质量各领域差异有统计学意义(P<0.05),在α=0.05的水平上,除了年龄因素外,其余9个因素全部进入回归方程。结论 驻藏官兵的生存质量状况有待提高,尤其在环境领域的状况亟待改善。影响其生存质量的主要影响因素为地域、职别、婚姻状况、进藏次数、就业前景、工作强度、与家人以及异性的关系等。     

Quality of life, health and physiological status and change at older ages

The relationship between self-reported health status and quality of life at older ages is well established. The present paper investigates this relationship further, using objective measures of health and their change over time in the English Longitudinal Study of Ageing, where positive quality of life at older ages was measured as CASP-19. Cross-sectionally, lung function and obesity, but not blood pressure, were associated with quality of life; these relationships in path analysis were transmitted primarily via functional limitation and more modestly, and only for lung function, via clinical depression. Longitudinally, the results suggest a stable and long-term influence on quality of life of lung function and, among women, body mass index, to which the influence of change may be cumulative; longer follow-up is required to clarify these processes. Overall, the results show that the relationship between health and quality of life is independent of potential psychological confounders, that functional limitation is the key dimension of health in its relationship with quality of life and that clinical depression may be an important mediator between functional limitation and quality of life.     

The Association Between Quality of Care and Quality of Life in Long-Stay Nursing Home Residents With Preserved Cognition

ObjectivesTo assess the overall quality of life of long-stay nursing home residents with preserved cognition, to examine whether the Centers for Medicare and Medicaid Service's Nursing Home Compare 5-star quality rating system reflects the overall quality of life of such residents, and to examine whether residents' demographics and clinical characteristics affect their quality of life.Design/measurementsQuality of life was measured using the Participant Outcomes and Status Measures—Nursing Facility survey, which has 10 sections and 63 items. Total scores range from 20 (lowest possible quality of life) to 100 (highest).Setting/participantsLong-stay nursing home residents with preserved cognition (n = 316) were interviewed.ResultsThe average quality- of-life score was 71.4 (SD: 7.6; range: 45.1–93.0). Multilevel regression models revealed that quality of life was associated with physical impairment (parameter estimate = −0.728; P = .04) and depression (parameter estimate = −3.015; P = .01) but not Nursing Home Compare's overall star rating (parameter estimate = 0.683; P = .12) and not pain (parameter estimate = −0.705; P = .47).ConclusionThe 5-star quality rating system did not reflect the quality of life of long-stay nursing home residents with preserved cognition. Notably, pain was not associated with quality of life, but physical impairment and depression were.     

Estimation of Potential Gain in Quality of Life from Early Detection of Cervical Cancer

ObjectiveTo estimate the lifetime gain in the health-related quality of life (HRQOL) from early detection of cervical cancer.MethodsA consecutive, cross-sectional sample of 421 patients with cervical cancer was administered the World Health Organization Quality of Life-brief version questionnaires. A nationwide sample of 22,543 patients with invasive cervical cancer (ICC) was collected from the national cancer registry for estimation of lifetime survival function from 1998 to 2007, which was further multiplied by the ratio of HRQOL score functions for patients with ICC and patients with carcinoma in situ (CIS), and summed up over lifetime to obtain expected relative-quality-adjusted survival. The difference between lifetime survival and the expected relative-quality-adjusted survival gives the expected total dissatisfied time during the life course.ResultsIn comparison with patients with CIS postconization, patients with ICC showed consistently lower scores in the physical and psychological domains and that of sexual life after adjustment for other risk factors. The expected years of life lost for an invasive cancer was 6.48 years using the general population as the reference cohort, while the durations of equivalent to living with a very dissatisfied HRQOL were 1.71 and 0.25 for the physical and psychological domains, respectively, and 1.47 years for sexual life. Validation of the extrapolation method based on a subcohort followed from the 6th to the 13th year shows a relative bias of 0.4%. Sensitivity analysis with 37,000 CIS cases as the reference cohort yields a similar result.ConclusionsEarly detection of cervical cancer not only avoids premature mortality but also prevents long-term living under lower HRQOL scores, including sexual life.