Quality Of Life For Family Members Research Articles

Dementia and Its Profound Impact on Family Members and Partners: A Large UK Cross-Sectional Study.

Dementia can adversely affect the quality of life (QoL) of family members/partners of those affected. Measuring this often-neglected burden is critical to planning and providing appropriate support services. This study measures this impact using the Family-Reported Outcome Measure (FROM-16). A large UK cross-sectional online study through patient research platforms, recruited family members/partners of people with dementia, to complete the FROM-16. Totally, 711 family members/partners (mean age=58.7y, SD=12.5; females=81.3%) of patients (mean age=81.6, SD=9.6; females=66.9) with dementia completed the FROM-16. The FROM-16 mean total score was 17.5 (SD=6.8), meaning "a very large effect" on QoL of family members, with females being more adversely impacted. Dementia profoundly impacts the QoL of family members/partners of patients. Routine use of FROM-16 could signpost provision of care support, reducing family members' burnout. Such routine data could be used in economic analysis of the burden of dementia as well as in predicting institutionalization.

An overlooked burden of acne in adolescents: the psychosocial well-being of their families

IntroductionAcne vulgaris is significantly associated with an increased burden of care and has an important impact on the quality of life (QoL) and self-esteem of affected individuals. We aimed to assess the QoL of adolescents with acne and their families as well as the association of QoL with acne severity, treatment response, duration of acne and localization of lesions. Material and MethodsThe sample included a total of 100 adolescents with acne vulgaris, 100 healthy controls and their parents. We collected data on sociodemographic characteristics, presentation of acne, duration of acne, treatment history, treatment response, and parental sex. We used the Global Acne Severity scale, Children’s Dermatology Life Quality Index (CDLQI), and the Family Dermatology Life Quality Index (FDLQI). ResultsIn the group of patients with acne, the mean CDLQI score in the patients was 7.89 (SD, 5.43) and the mean FDLQI score in the parents was 6.01 (SD, 6.11). In the control group, the mean CDLQI score in healthy controls was 3.92 (SD, 3.88) and the mean FDLQI score in their family members was 2.12 (SD, 2.91). We found a statistically significant difference between the acne and control groups in CDLQI and FDLQI scores (P < .001). There were also statistically significant differences in the CDLQI score based on the duration of acne and the response to treatment. ConclusionsPatients with acne and their parents had a decreased QoL compared with healthy controls. Acne was associated with impaired QoL in family members. Assessing QoL in the family in addition to that of the patient may allow an improved management of acne vulgaris.

Una carga ignorada del acné en adolescentes: el bienestar psicosocial de la familia

IntroductionAcne vulgaris is significantly associated with an increased burden of care and has an important impact on the quality of life (QoL) and self-esteem of affected individuals. We aimed to assess the QoL of adolescents with acne and their families as well as the association of QoL with acne severity, treatment response, duration of acne and localization of lesions. Material and methodsThe sample included a total of 100 adolescents with acne vulgaris, 100 healthy controls and their parents. We collected data on sociodemographic characteristics, presentation of acne, duration of acne, treatment history, treatment response, and parental sex. We used the Global Acne Severity scale, Children's Dermatology Life Quality Index (CDLQI), and the Family Dermatology Life Quality Index (FDLQI). ResultsIn the group of patients with acne, the mean CDLQI score in the patients was 7.89 (SD, 5.43) and the mean FDLQI score in the parents was 6.01 (SD, 6.11). In the control group, the mean CDLQI score in healthy controls was 3.92 (SD, 3.88) and the mean FDLQI score in their family members was 2.12 (SD, 2.91). We found a statistically significant difference between the acne and control groups in CDLQI and FDLQI scores (P<.001). There were also statistically significant differences in the CDLQI score based on the duration of acne and the response to treatment. ConclusionsPatients with acne and their parents had a decreased QoL compared with healthy controls. Acne was associated with impaired QoL in family members. Assessing QoL in the family in addition to that of the patient may allow an improved management of acne vulgaris.

Effectiveness of Multicomponent Intervention on Quality of Life of Family Caregivers of Cancer Patients.

Objective:The study aimed to determine the effectiveness of the multicomponent intervention on Quality of life (QOL) of family caregivers of cancer patients. Methodology:A Quasi-experimental study with pre and post-test measures was conducted among 200 caregivers of cancer patients selected by convenient sampling technique. The experimental group received the intervention, and no intervention was given for the control group during the study period. The data were collected from family members looking after the cancer patients diagnosed with breast/head & neck cancers and who were in the third and fourth stages of cancer. After the pre-test, provided multicomponent intervention (Pranayama, yogic relaxation, counselling and Education) and a post-test was conducted at the first month & third month. The obtained data were analysed and inferred using descriptive and inferential statistics to compare the outcomes among the groups. Result:Most of the caregivers belong to the age group of 31 to 40 years in the intervention group (31%) and in the control group (35%), 31% of them had their education up to a primary level in both the groups and most of the caregivers were spouses (49%). Regarding the QOL of family members, improvement was noted from baseline 66.66 to 126.82 (3 months) among the intervention group, and in the control group, mean QOL enhanced from 59.77 to 81.97. Repeated measure ANOVA was computed to analyse difference within and between the groups and it showed that the intervention program was efficacious in enhancing the QOL of family caregivers of cancer patients (F (1, 191) =639.02, p=.001). Conclusion: Nurses play a vibrant role in improving the Quality of life of family members of cancer patients since they are mostly involved in providing care. Health care system must ensure that the family members who provide care to the cancer patients receive appropriate teaching programmes on reducing their burden.

Investigation on quality of life in patients with inflammatory bowel disease and their family members in Fujian Province

Objective To investigate the quality of life (QOL) and its main influencing factors in patients with inflammatory bowel disease (IBD) and their families members in Fujian Province, and to provide an evidence for guiding the clinical strategy. Methods From September 2015 to March 2016, 114 IBD patients who met the standards, their 97 family members, and 113 irritable bowel syndrome (IBS) patients were enrolled. The QOL was assessed with 36-item short form health survey questionnaire(SF-36). T test, inspection rank and Chi-square were performed for statistical analysis in two groups and multiple group. The influence factors of QOL using multiple linear stepwise regression analysis. Results There was no difference in QOL scores between CD and UC patients ((62.82±18.55) vs (62.60±17.94); t=0.065, P=0.948). The QOL scores of IBD patients were lower than those of IBS patients (62.72±18.18 vs 67.25±16.26), and the difference was statistically significant (t=-1.975, P=0.049). The QOL scores of IBD patients with medical insurance were higher than those of patients without medical insurance (67.13±18.18 vs 57.06±16.68), and the difference was statistically significant (t=3.034, P=0.003). The dimension scores of body pain, general health, social function, emotional function, mental health in IBD patients relatives were lower than those of the general population ((72.29±17.27) vs (85.61±18.37), (60.92±17.08) vs (69.55±21.32), (80.80±15.32) vs (86.85±17.07), (68.38±37.38) vs (76.45±38.45), (61.97±15.30) vs (72.65±16.81), respectively), and the differences were statistically significant (t=-7.597, -4.979, -1.870, -2.125, -6.875, all P<0.05). The total QOL scores of families members of IBD patients with operation history was lower than those of without operation history (64.62±16.74 vs 73.98±14.15), and the difference was statistically significant (t=-2.540, P=0.013). Conclusions The QOL of IBD patients was lower than that of IBS patients. and also The QOL relates with payment types for medical care, and the QOL of family members of IBD patients also decreases. Psychological interventions should be in plemented in both IBD patients and their family members in clinical treatment. Key words: Inflammatory bowel diseases; Family members; SF-36; Quality of life

Anterior Urethral Stricture Disease Negatively Impacts the Quality of Life of Family Members.

Purpose. To quantify the quality of life (QoL) distress experienced by immediate family members of patients with urethral stricture via a questionnaire given prior to definitive urethroplasty. The emotional, social, and physical effects of urethral stricture disease on the QoL of family members have not been previously described. Materials and Methods. A questionnaire was administered prospectively to an immediate family member of 51 patients undergoing anterior urethroplasty by a single surgeon (SBB). The survey was comprised of twelve questions that addressed the emotional, social, and physical consequences experienced as a result of their loved one. Results. Of the 51 surveyed family members, most were female (92.2%), lived in the same household (86.3%), and slept in the same room as the patient (70.6%). Respondents experienced sleep disturbances (56.9%) and diminished social lives (43.1%). 82.4% felt stressed by the patient's surgical treatment, and 83.9% (26/31) felt that their intimacy was negatively impacted. Conclusions. Urethral stricture disease has a significant impact on the family members of those affected. These effects may last decades and include sleep disturbance, decreased social interactions, emotional stress, and impaired sexual intimacy. Treatment of urethral stricture disease should attempt to mitigate the impact of the disease on family members as well as the patient.

Assessment of Quality of Life of Family Members of Inpatients with End-Stage Disease.

An important aim of palliative care is to ensure the highest possible quality of life (QoL) for the family members of patients. We aimed to determine the QoL of family members of hospitalized patients with end-stage disease, as well as differences in QoL based on socio-demographic characteristics and the patient's functional status, psychological distress, and QoL. Study participants were 292 family members of terminally ill patients at University Hospital, Ostrava, Czech Republic. To evaluate family members' QoL, we used the Quality of Life in Life-Threatening Illness--Family Carer Version (QOLLTI-F). We used the Hospital Anxiety and Depression Scale (HADS) and the Karnofsky Performance Status (KPS) Scale to assess patients' functional status and psychological distress. A statistically significant difference was found in QoL evaluation based on family members' socio-demographic characteristics in education, employment, and age. A significantly lower QoL score was observed for patients' life partners in six domains. A correlation was found between patients' poorer functional status and family members' lower QoL. We found lower global QoL in family members of patients with depression. Family support is a cornerstone of palliative care. Palliative care professionals should focus on at-risk family members--the life partners of patients, the unemployed, younger people, and those whose ill loved one has a poor functional status.

Quality of life in adult patients with epilepsy and their family members

PurposeEpilepsy is not only a neurological disorder but may also have negative psychosocial consequences on people with epilepsy (PWE) and their relatives. Epilepsy has a major impact on quality of life (QoL) in PWE and family members. However, less is known about the impact of family support and family functioning on quality of life for PWE and family members and their interaction. Therefore, the study aimed to investigate factors that influence QoL in hospitalized adult patients with epilepsy and their relatives. MethodAn explorative cross-sectional study has been conducted in a tertiary clinic in Switzerland. Hospitalized adult patients with epilepsy and their relatives were enrolled in the study. Subjective QoL as well as family support and family functioning were measured with patients and family members. Patients and their relatives assessed the patients’ support need and their satisfaction with the care provided. In addition, patients were administered a disease-related HRQoL measure (QoLIED-36, Version 2).Backward stepwise multivariate linear regression analysis was used to explain variances in patients and relatives’ subjective QoL. ResultsOne hundred and four dyads of patient and family member participated. Subjective QoL in patients and family members differed significantly, as did satisfaction with care delivery. In both groups family support contributed significantly to QoL. In the models 40% of the variance in QoL in patients and relatives could be explained. While the quality of life of the family members was affected by the patients’ knowledge about the disease and the reason for their current hospitalization, patient QoL scores had no influence on the QoL of family members. The patients’ QoL, however, depended significantly on the QoL of the family members. ConclusionInterventions should address both PWE and family members and focus on the self-care improvement of PWE and the well-being and coping of family members. A patient-centred approach needs to include both the PWE and the relatives and address family support in order to alleviate stress in the patients and relatives alike.

The Relationship Between Meaning of Illness, Social Support, Coping Strategies, and Quality of Life for Lung Cancer Patients and Their Family Members

This article explores the relationship between meaning of illness, perceived social support resources, coping strategies used, and quality of life (QOL) by patients with lung cancer and their family members. The study was cross-sectional using interview data from 85 patients and associated family members. Regression results showed that total QOL in patients with lung cancer is predicted most by meaning of illness, specifically, the illness being perceived as manageable. QOL in family members is predicted most by meaning of illness, specifically, less adverse impact. Interestingly, the overall meaning of illness, coping strategies used, and social support were similar in the 2 groups. The results of the study emphasize the importance of acknowledging the circumstances of people's lives, both patients surviving lung cancer and their family members, which contribute to QOL.