Quality of life in family members coping with chronic illness in a relative: An exploratory study.

Background and objectives: To explore the impacts that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has on the patient and their family members using the WHOQOL-BREF (Abbreviated World Health Organisation Quality of Life questionnaire) and FROM-16 (Family Reported Outcome Measure-16) quality of life assessments. Materials and Methods: A quantitative research study using postal questionnaires was conducted. A total of 39 adult volunteers expressed an interest in participating in the study: 24 returned appropriately completed questionnaires. Patients with ME/CFS completed the WHOQOL-BREF and up to four of their family members completed the FROM-16 questionnaire. Results: ME/CFS negatively affects the quality of life of the patient (median scores WHOQOL-BREF: Physical health = 19, Psychological = 44, Social relationships = 37.5, Environment = 56, n = 24) and their family members’ quality of life (FROM-16: Emotional = 9.5, Personal and social = 11.5, Overall = 20.5, n = 42). There was a significant correlation between the patient’s reported quality of life scores and their family members’ mean FROM-16 total scores. Conclusions: This study identifies the major impact that having an adult family member with ME/CFS has on the lives of partners and of other family members. Quality of life of ME/CFS patients was reduced most by physical health compared to the other domains. Quality of life of family members was particularly impacted by worry, family activities, frustration and sadness. This highlights the importance of measuring the impact on the lives of family members using tools such as the FROM-16 in the ME/CFS clinical encounter and ensuring appropriate support is widely available to family members.

Download Full-text

Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

Health and Quality of Life Outcomes ◽

10.1186/s12955-021-01819-4 ◽

2021 ◽

Vol 19 (1) ◽

Author(s):

R. Shah ◽

F. M. Ali ◽

A. Y. Finlay ◽

M. S. Salek

Keyword(s):

Quality Of Life ◽

Family Members ◽

Unmet Need ◽

Reliability And Validity ◽

Chronic Health Condition ◽

Family Quality Of Life ◽

Good Reliability ◽

Huge Impact ◽

The Impact

Abstract Background A person’s chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures. Methods The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument. Results Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference. Conclusions Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.

Download Full-text

Pain Assessment: Benefits of Using Pain Scales for Surgical Patients in South Bohemian Hospitals

Healthcare ◽

10.3390/healthcare9020171 ◽

2021 ◽

Vol 9 (2) ◽

pp. 171

Author(s):

Vera Olisarova ◽

Valerie Tothova ◽

Martin Cerveny ◽

Vendula Dvorakova ◽

Petr Sadilek

Keyword(s):

Quality Of Life ◽

Pain Management ◽

Pain Assessment ◽

Exploratory Study ◽

Surgical Patients ◽

The South ◽

Pain Scales ◽

Emotional Component ◽

Attention To Pain

Pain is a medical and nursing problem that is common in surgical departments. Inadequate pain management can lead to patient distress, as well as extending the period in which the patient’s quality of life is reduced. The standardized SF-MPQ-2 questionnaire provides nurses with the opportunity to assess pain within a broader context. The aim of this descriptive and exploratory study was to describe the state of pain assessment in surgical patients in the South Bohemian Region and to highlight the benefits of using a standardized tool for proper pain assessment. The research was carried out using a quantitative survey within the South Bohemian Region (Czech Republic). The participants in the study were nurses working in surgical departments in hospitals in the region as well as hospitalized patients. The results show that nurses pay slightly more attention to pain assessments than doctors. We know that, generally, pain decreases with time after surgery. Nonetheless, returning pain, as well as continuous pain, can occur, both of which have an emotional component. The results of this study are directed at nurses and include a call for more effective pain management through improved assessment.

Download Full-text