Striking a Balance: A Qualitative Study of Next of Kin Participation in the Care of Older Persons in Nursing Homes in Sweden

Wallerstedt, Birgitta; Behm, Lina; Alftberg, Åsa; Sandgren, Anna; Benzein, Eva; Nilsén, Per; Ahlström, Gerd

doi:10.3390/healthcare6020046

Cited by 17 publications

(51 citation statements)

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“…Research setting. The KUPA project consists of an educational intervention about knowledge-based palliative care for nursing home staff and managers, as detailed in previous studies [28,29]. The intervention consists of five seminars given over a period of 6 months, including, among other topics, the communication and participation of next of kin in palliative care.…”

Section: Settingmentioning

confidence: 99%

“…In this context, there is no consensus definition of "participation." However, in the empirical literature, a recent study from the KUPA project [29] describing how next of kin participate in care at nursing homes concluded that participation was a balancing act between maintaining one's own responsibility while also acceding responsibility to the nursing home staff. Another study within the project, exploring the meaning of participation in the care of older people in nursing homes [30], reported that participation had multiple perceived meanings and a prerequisite for participation was being present in different ways, whether physically, mentally, or both.…”

Section: Introductionmentioning

confidence: 99%

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Measuring next of kin’s experience of participation in the care of older people in nursing homes

et al. 2020

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Background Lack of conceptual clarity and measurement methods have led to underdeveloped efforts to measure experience of participation in care by next of kin to older people in nursing homes. Objective We sought to assess the measurement properties of items aimed at operationalizing participation in care by next of kin, applied in nursing homes. Methods A total of 37 items operationalizing participation were administered via a questionnaire to 364 next of kin of older people in nursing homes. Measurement properties were tested with factor analysis and Rasch model analysis. Results The response rate to the questionnaire was 81% (n = 260). Missing responses per item varied between <0.5% and 10%. The 37 items were found to be two-dimensional, and 19 were deleted based on conceptual reasoning and Rasch model analysis. One dimension measured communication and trust (nine items, reliability 0.87) while the other measured collaboration in care (nine items, reliability 0.91). Items successfully operationalized a quantitative continuum from lower to higher degrees of participation, and were found to generally fit well with the Rasch model requirements, without disordered thresholds or differential item functioning. Total scores could be calculated based on the bifactor subscale structure (reliability 0.92). Older people (� 65 years) reported a higher degree of communication and trust and bifactor total scores than younger people (p < 0.05 in both cases). People with a specific contact person experienced a higher degree of participation in the two subscales and the bifactor total score (p < 0.05 in all three instances).

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Section: Settingmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Measuring next of kin’s experience of participation in the care of older people in nursing homes

et al. 2020

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“…The most up-to-date information on this area of living space design for the remainder of 2018 is addressed in articles [28], [29] and [30].…”

Section: Figure 1 Tree Of Definition Usedmentioning

confidence: 99%

Environmental Issues Related to the Elderly and Physically Disabled People in Different Life Situations<strong> </strong><strong> </strong>

Katunský¹,

Brausch²

2018

Preprint

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In Europe we can see a change in the social structure in the last period. Average life expectancy has increased dramatically over the last 50 years. Because of the improved life situation and advanced level of health care, older people are slower. With advancing age, the likelihood of experiencing a variety of constraints such as visual impairment, reduced hearing or physical ability increases. In such a life stage tenants are often forced to leave their long-term living space because these homes can not serve "new" individual needs and the resulting personal protection goal. This transition from the privacy of their home to the new environment often appears to be a painful change. They will take their familiar and well-known surroundings, because their homes can not be adapted to serve new needs. It must be the policy’s role to create a new inclusive social space and the requirement for architects and designers to create new goals for the design of an adaptable environment. This is a comprehensive approach to the design of the outer and inner space that could serve people even if there is an unexpected situation and changes in movement and physiological limitations of older people. The contribution shows the results of the survey conducted in Germany and Slovakia. In the survey respondents expressed their opinion on what they considered important in creating an adaptive environment. Results are processed graphically with explanation. The results were mainly for designers and developers of the indoor environment. Based on the results of the questionnaire survey, studies of possible modifications in the interior of the flats were then prepared. The contribution yielded these results in three age groups of respondents; i. people aged 35, 50 and over 50.

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“…As ageing progresses, with increasingly severe multiple morbidities, this interaction can become even more stressful for the next of kin which may have a negative impact on their quality of life (QOL) [7,8]. It may cause them to experience conflicting feelings of responsibility [9] between their own needs and those of their relative, as a result of taking part in the care while at the same time leaving the responsibility for care to the staff [9,10] They often carry a heavy burden and may experience mental ill health [11]. They closely follow their loved one's transition until the end of life, which has an impact on their own health and leads to difficulties in managing their daily lives [12].…”

Section: Introductionmentioning

confidence: 99%

Psychometric properties of the WHOQOL-BREF among next of kin to older persons in nursing homes

Rosén

Ahlström

Lexén

2020

Health Qual Life Outcomes

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Background: The worries of next of kin about their older loved ones in nursing homes can be extensive and can adversely affect their subjective experiences of their own physical, mental and social well-being. It is thus of utmost importance to measure the quality of life of next of kin in a valid and reliable way. Methods: The design is a cross-sectional study with psychometric evaluation based on classical test theory in preparation for a planned educational intervention study on palliative care. An abbreviated version of the World Health Organization's quality-of-life self-assessment instrument WHOQOL, the Swedish WHOQOL-BREF, was completed by 254 next of kin of older persons in 30 nursing homes. Data quality was assessed via the mean, median, item response, missing values, and floor and ceiling effects. Reliability was estimated using Cronbach's alpha and corrected item-total correlations. Construct validity was estimated by Spearman's rank correlation, and model fit was assessed using confirmatory factor analysis. Results: The rate of missing data was low (less than 2%). Ceiling effects ranged from 11 to 43% and were above 20% for 21 of 24 items. The corrected item-total correlations varied between 0.35 and 0.68 and were thus well above the lower limit of 0.30. Cronbach's alpha was 0.83, indicating satisfactory internal consistency. The confirmatory factor analysis indicated a fair to close model fit (comparative fit index 0.93, root mean squared error of approximation 0.06). Conclusions: The findings suggest that the WHOQOL-BREF may constitute a reliable and valid measure of quality of life for use among next of kin to older persons in nursing homes. When interpreting the results, it is important to assess the ceiling effect, as it may restrict the ability of the WHOQOL-BREF to detect true positive changes in quality of life over time. Trial registration: NCT02708498.

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Striking a Balance: A Qualitative Study of Next of Kin Participation in the Care of Older Persons in Nursing Homes in Sweden

Cited by 17 publications

References 40 publications

Measuring next of kin’s experience of participation in the care of older people in nursing homes

Measuring next of kin’s experience of participation in the care of older people in nursing homes

Environmental Issues Related to the Elderly and Physically Disabled People in Different Life Situations<strong> </strong><strong> </strong>

Psychometric properties of the WHOQOL-BREF among next of kin to older persons in nursing homes

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