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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.

ABSTRACT: Most of the care in nursing homes is palliative in nature, as it is the oldest and the frailest people who live in nursing homes. The aim of this study was to explore next of kin's experiences of participating in the care of older persons at nursing homes. A qualitative design was used, based on semi-structured interviews with 40 next of kin, and analyzed using qualitative content analysis. An overarching theme emerged, a balancing act consisting of three categories: (1) visiting the nursing home; (2) building and maintaining relationships; and (3) gathering and conveying information. The next of kin have to balance their own responsibility for the older person's wellbeing by taking part in their care and their need to leave the responsibility to the staff due to critical health conditions. The next of kin wanted to participate in care meetings and conversations, not only in practical issues. The findings indicate the need to improve the next of kin's participation in the care as an equal partner. Increased knowledge about palliative care and decision-making of limiting life-prolonging treatment may lead to a higher quality of care.

SUBMITTER: Wallerstedt B

PROVIDER: S-EPMC6023303 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

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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.

Wallerstedt Birgitta B Behm Lina L Alftberg Åsa Å Sandgren Anna A Benzein Eva E Nilsen Per P Ahlström Gerd G

Healthcare (Basel, Switzerland) 20180511 2

Most of the care in nursing homes is palliative in nature, as it is the oldest and the frailest people who live in nursing homes. The aim of this study was to explore next of kin's experiences of participating in the care of older persons at nursing homes. A qualitative design was used, based on semi-structured interviews with 40 next of kin, and analyzed using qualitative content analysis. An overarching theme emerged, a balancing act consisting of three categories: (1) visiting the nursing hom ...[more]

PMID: 29751660

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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: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:BackgroundAntiepileptics are commonly prescribed to nursing home residents with Alzheimer's disease and related dementias (ADRD) but there is little scientific support for their use in this population. It is unclear whether different antiepileptics are targeting different indications.MethodsUsing the Minimum Data Set and Medicare data, including Part D pharmacy claims, we constructed annual cohorts of residents with ADRD with long-term stays in nursing homes from 2015 to 2019. For each year, we measured the proportion of residents with ADRD in nursing homes nationwide with at least one antiepileptic prescription. We also measured trends in valproic acid, gabapentin, antipsychotic, and opioid prescribing. Finally, we examined how prescribing rates differed based on whether residents with ADRD had disruptive behaviors or reported pain.ResultsOur study sample includes 973,074 persons living with ADRD who had a long-term stay in a nursing home, which was defined as at least 3 months. The proportion of residents with ADRD with at least one antiepileptic prescription increased from 29.5% in 2015 to 31.3% in 2019, which was driven by increases in the rate of valproic acid and gabapentin prescribing. Conversely, antipsychotic prescribing rates declined from 32.1% to 27.9% and opioid prescribing rates declined from 39.8% to 31.7%. The risk of valproic acid prescribing was 10.9 percentage points higher among residents with ADRD with disruptive behaviors, while the risk of being prescribed gabapentin was 13.9 percentage points higher among residents with ADRD reporting pain.ConclusionsAntiepileptic prescribing among nursing home residents with ADRD is increasing, while antipsychotic and opioid prescribing is declining. Examining antiepileptic prescribing to residents with ADRD who had disruptive behaviors and/or reported pain suggests that two of the most common antiepileptics, valproic acid and gabapentin, are being used in clinically distinct ways. Antiepileptic prescribing of questionable risk-benefit for dementia care warrants further scrutiny.

Dataset Information

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

Publications

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

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