A concept analysis of health-related quality of life in young people with chronic illness

Aims. To critique existing concept analyses of quality of life and develop a definition applicable for young people with chronic illness. Background. Quality of life is a commonly used phrase but there is no universal definition. Five perspectives of quality of life have been proposed: sociological, economic, psychological, philosophical and ethical. However, health has emerged as an important but distinct perspective. The nursing profession has made a substantial contribution to the understanding of the interrelationship of health and quality of life. Design. Literature review. Methods. A search on electronic databases to April 2007 was made using the terms ‘quality of life’ and ‘concept analysis’. Papers were included in the review if they used a recognised method of concept analysis and were conducted by nurses. A new concept analysis was then performed specifically focusing on young people’s experiences of living with chronic illness. Results. Eight concept analyses were identified, all of which had limitations. All the concept analyses were based on adult literature so did not take into consideration developmental changes, language level, or young people’s construction of health and illness. The new concept analysis found that young people living with chronic illness generally view themselves and their lives in the same way as their healthy peers. While their aspirations are often constrained by illness and treatment the relationship between illness and life cannot be seen in isolation of development. Conclusion. Previous definitions of quality of life derived from concept analyses with adult populations do not adequately represent the experience of young people with chronic illnesses, but can be made more specific by incorporating important attributes such as developmental stage and the importance of peer group and family. Relevance to clinical practice. The current analysis provides a clear definition of quality of life from the health perspective which is specific for use with young people with chronic illness to guide practice and research.     

The quality of nursing care as perceived by individuals with chronic illnesses: the magical touch of nursing

Providing high quality nursing care is the vision of nursing. The literature has revealed gaps between the perspectives of patients and nurses regarding the quality of nursing care. The purpose of this study was to investigate how individuals with chronic illnesses perceive the quality of nursing care in order to enhance the quality of care. The participants were 11 Icelandic individuals, aged 39-80 years with various chronic illnesses. Phenomenology was the research approach and in-depth dialogues were used. Five themes emerged: nurses who provided high quality nursing care, the effects of high quality nursing care, the lack of good quality nursing care and its effects, ancillary factors, and the art of being a patient. Based on the findings I conclude that professional caring is the most important part of quality of care as perceived by individuals with chronic illnesses.     

Knowledge received by hospital patients—a factor connected with the patient‐centred quality of nursing care

The main purpose of this study was to evaluate and analyse the connection between the level of quality of nursing care and knowledge received by patients (N = 266, n = 226), response rate was 85%. The data were collected using two structured instruments: one measuring the quality of nursing care experienced by patients (The Good Nursing Care Scale, GNCS) and one measuring the received knowledge of hospital patients (RKHP). The data were collected at one (out of five) Finnish university hospitals, in all medical wards during 5 weeks in 2009. A clear association between the level of the quality of nursing care and the level of received knowledge was found: on the total level of instruments, correlation was strong (r = 0.705). Support of empowerment (GNCS) had statistically significant strong correlation between biophysiological knowledge (RKHP), (r = 0.718), and experiential knowledge (r = 0.633), (P ≤ 0.01). Furthermore, there was a strong correlation between nursing activities and biophysiological knowledge (r = 0.637). Higher age, sufficient advance information and better self‐perceived health status were associated both with the level of the quality of nursing care and level of received knowledge. In the future, a special attention should be paid to the sufficient information for patients before their hospital stays.     

The impact of care on family and health-related quality of life of parents with chronically ill and disabled children

Purpose: Parents of disabled and/or chronically ill children are more vulnerable regarding their health compared to parents of healthy children. This study examines how far the burden of care is associated with health-related quality of life (QoL) in parents, across different illnesses and disabilities. Moreover, it is unclear whether and to which extent familial resources can explain the association between parents’ care burden and health. Method: Data stem from a survey with the German Children’s Network, a self-help umbrella organization of parents and families of chronically ill and disabled children. Data collection was conducted nationwide with a standardized online questionnaire, which included children’s diagnoses and severity, burden of care, family and socioeconomic status, health-related QoL (SF-12) and family impact (Impact on Family Scale, IFS). 1567 parents participated. Results: A higher burden of care is associated with higher risks for poor health-related QoL. Especially, social impact and financial burden, which are both associated with care, can help to explain these associations. Conclusions: Future interventions should focus not only on the affected child but also on the whole family system and its social integration, as this seems likely to relief parents from burden of care. Therefore, a sustainable cooperation of health care institutions and professionals with self-help groups and parental initiatives is recommended.

• Implications for Rehabilitation

• Parents of disabled and chronically ill children are a vulnerable group regarding their health-related quality of life.

• A higher burden of care is associated with less social contacts, higher financial burden and higher help-needs in the household, which significantly contribute to higher health risks.

• Rehabilitation should take these constraints into account and put a stronger focus on the family of disabled and chronically ill children to support their inclusion.

• A sustainable and formally anchored collaboration with self-help and patient groups is recommended.

     

慢性牙周炎患者口腔保健自我效能与口腔健康相关生活质量的相关性研究

目的探讨慢性牙周炎患者口腔保健自我效能与口腔健康相关生活质量的相关性。方法采用口腔保健自我效能量表和口腔健康影响程度量表对120例慢性牙周炎患者进行问卷调查,并分析口腔保健自我效能与口腔健康相关生活质量的相关性。结果慢性牙周炎患者口腔保健自我效能水平总分为(46.10±8.67)分;口腔健康生活质量总分为(18.90±7.62)分。口腔保健自我效能总分、正确刷牙、口腔就诊维度得分与口腔健康生活质量总分均呈负相关(P0.01或P0.05)。结论慢性牙周炎患者口腔保健自我效能水平低,口腔健康生活质量不佳,建议提高患者口腔保健自我效能水平,以此改善患者的口腔健康相关生活质量。