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Quality of Life among Next of Kin of Frail Older People in Nursing Homes: An Interview Study after an Educational Intervention concerning Palliative Care.

ABSTRACT: One cornerstone of palliative care is improving the family's quality of life (QoL). The principles of palliative care have not been sufficiently applied in nursing homes. The aim of this study was to investigate the experiences of QoL of next of kin of frail older persons in nursing homes after an educational intervention concerning palliative care. This qualitative interview study with 37 next of kin used an abductive design with deductive and inductive content analysis. The deductive analysis confirmed the three themes of QoL from the study before the implementation: (1) orientation to the new life-situation, (2) challenges in the relationship, and (3) the significance of the quality of care in the nursing home. The inductive analysis resulted in the sub-theme "Unspoken palliative care". Being the next of kin of an older person living in a nursing home can be distressing despite round-the-clock care, so staff need to apply a more explicitly palliative care perspective. Future research needs to evaluate the influence of meaning-focused coping on next of kin's QoL and integrate this knowledge in psychosocial interventions. Clinical Trial Database for Clinical Research: KUPA project NCT02708498.

SUBMITTER: Ahlstrom G

PROVIDER: S-EPMC8909579 | biostudies-literature | 2022 Feb

REPOSITORIES: biostudies-literature

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Quality of Life among Next of Kin of Frail Older People in Nursing Homes: An Interview Study after an Educational Intervention concerning Palliative Care.

Ahlström Gerd G Rosén Helena H Persson Eva I EI

International journal of environmental research and public health 20220224 5

One cornerstone of palliative care is improving the family's quality of life (QoL). The principles of palliative care have not been sufficiently applied in nursing homes. The aim of this study was to investigate the experiences of QoL of next of kin of frail older persons in nursing homes after an educational intervention concerning palliative care. This qualitative interview study with 37 next of kin used an abductive design with deductive and inductive content analysis. The deductive analysis ...[more]

PMID: 35270339

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Project description:BackgroundNext of kin participation in care is a cornerstone of palliative care and is thus important in nursing homes, and outcomes following interventions need to be evaluated using robust methods.ObjectiveTo use within-group and within-individual analytical approaches to evaluate the participation of next of kin in care following an intervention and to compare the outcome between the intervention and control groups.MethodsA pre-post intervention/control group study design was used. The educational intervention, directed towards staff members, focused on palliative care. The Next of Kin Participation in Care scale comprises the Communication and Trust subscale and the Collaboration in Care subscale, with nine items each. In total, 203 persons (intervention group: n = 95; control group: n = 108) were included. Three different analytical approaches were used: 1) traditional within-group comparison of raw ordinal scores and linearly transformed interval scores; 2) modern within-individual (person-level) interval score comparisons; 3) comparisons between the intervention group and control group based on individual person-level outcomes.ResultsWithin-group comparisons of change revealed no change in any of the groups, whether based on raw or transformed scores. Despite this, significant improvements at the individual level were found in 32.9% of the intervention group and 11.6% of the control group for the total scale (p = 0.0024), in 25% of the intervention group and 10.5% of the control group for the Communication and Trust subscale (p = 0.0018), and in 31.2% of the intervention group and 10.5% of the control group for the Collaboration in Care subscale (p = 0.0016). However, a significant worsening at the individual level in Collaboration in Care was found in 35.1% of the intervention group but only among 8.4% of the control group (p < 0.0005).ConclusionThe intervention seems to have a positive impact on next of kin participation in care in nursing homes, especially for communication and trust. However, some next of kin reported decreased participation in care after the intervention. Modern individual person-level approaches for the analysis of intervention outcomes revealed individual significant changes beyond traditional group-level comparisons that would otherwise be hidden. The findings are relevant for future outcome studies and may also necessitate a re-evaluation of previous studies that have not used individual person-level comparisons.Trial registrationThis study is part of the intervention project registered under Clinical Trials Registration NCT02708498.

Project description:BackgroundThe length of stay in nursing homes before death in Sweden has significantly decreased, and nearly one-third of people die within 6 weeks of entering a nursing home. Support for the next of kin is one of the cornerstones of palliative care, but the principles are not always adhered to as recommended when caring for the elderly, which can affect the quality of life of their next of kin. The aim of this study was to explore the experiences of quality of life among the next of kin of older persons who live in nursing homes before an educational intervention of palliative care.MethodsThis is an explorative qualitative interview study with 40 next of kin using qualitative content analysis performed at baseline before the implementation of the principles of palliative care in nursing homes.ResultsThe next of kin's experiences of quality of life were expressed in three themes: Orientation to the new life situation, Challenges in their relationship and the Significance of the quality of care in the nursing home. The next of kin experienced a sense of relief, although the older person was constantly on their minds, and they could feel lonely. The difference in the couple'slife situations was experienced as burdensome by the next of kin. The challenges in the relationship were described as stressful, related to a guilty conscience and the older person's vulnerability. The nursing home could be a context facilitating good relations. The perceptions of quality of care in terms of person-centredness affected the quality of life of the next of kin.ConclusionsThe findings show that four factors are decisive for the quality of life of next of kin: the relationships within the family, the degree of relief that nursing home care entails as compared to home care, the older person's health status and whether the care is person-centred. Increased knowledge and education regarding palliative care in nursing homes are needed to better meet the needs of next of kin. Implementation of palliative care should take into account the need for support for next of kin.Trial registrationNCT02708498, 15 March 2016.

Project description: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). CONCLUSION:Psychometric properties revealed satisfactory support for use, in nursing home settings, of the self-reported Next of Kin Participation in Care questionnaire, with a bifactor structure. Additional research is needed to evaluate the effectiveness of the scales' abilities to identify changes after intervention. TRIAL REGISTRATION:The KUPA project has Clinical Trials number NCT02708498.

Project description:BackgroundThere has been a global increase in the number of people who are dying of old age. This development implies a need for good palliative care among older persons at the end of life. Here nursing homes have an important role to play. However, the principles of palliative care have not been sufficiently applied in nursing homes, and there is a need to increase the implementation of palliative care in these settings. Therefore the project named Implementation of Knowledge-Based Palliative Care in Nursing Homes (the KUPA project, to use its Swedish acronym) was started as a contribution to filling this knowledge gap. The aim of the present study was to investigate the professionals' experiences of readiness for change to knowledge-based palliative care at nursing homes after the educational intervention within the KUPA project.MethodsThe focus group method was used to interview 39 health-care professionals with the aid of semistructured questions based on the Organizational Readiness for Change theoretical framework. Six focus groups were formed at six nursing homes in two counties in southern Sweden. The groups included different types of professionals: assistant nurses, nurses, occupational therapists, physiotherapists and social workers. The analysis was conducted with an abductive approach and included deductive and inductive content analysis.ResultsThe analysis revealed one overarching theme: hopeful readiness for change in palliative care despite remaining barriers. The main categories were increased knowledge facilitating development, enhanced team spirit, uncertainty about future plans connected with hopeful readiness and remaining organizational barriers.ConclusionsThis study adds knowledge and understanding concerning professionals' readiness for change palliative care in nursing homes and shows how ready nursing home settings undertake these changes in practice. The Organizational Readiness for Change theory proved suitable for application in nursing homes to assess the professionals' experiences and to evaluate educational interventions regardless of the organization's readiness for change.Trial registrationClinicalTrials NCT02708498 , first registration 15/03/2016.

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Quality of Life among Next of Kin of Frail Older People in Nursing Homes: An Interview Study after an Educational Intervention concerning Palliative Care.

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Quality of Life among Next of Kin of Frail Older People in Nursing Homes: An Interview Study after an Educational Intervention concerning Palliative Care.

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