Hypothesis / aims of study
This study focuses on what creates value for older persons with incontinence who are provided with toileting assistance and containment strategies. In the older population, and especially for those living in nursing homes, the need for toileting assistance and containment strategies is common.
Several questionnaires are available for the assessment of incontinence as well as for surveying patient-reported outcomes measures (PROMs) to evaluate patients’ health status and quality of life, for example. However, there is dearth of questionnaires that focus on patients’ experience of receiving care, called “patient-reported experience measures (PREMs)”. With a PREM the patient is encouraged to report their actual experience of care, the encounter with health care professionals and the assistance they are provided with.
Having incontinence can be a stigma and needing toileting assistance can be experienced as an intrusion. For this reason, we need more knowledge about what creates value for the older person who is provided with this assistance. The ultimate goal would be to develop a self-report instrument regarding the older person’s experiences.
The aim of this study was to describe older persons’ and health care professionals’ experiences of value-creating continence care.
The research question was: What values are of importance in relation to toileting and containment care for older persons provided with toileting assistance and containment strategies?
Study design, materials and methods
The study had a descriptive qualitative design using method triangulation (1) to understand the participants’ experiences of value-creating continence care in relation to a conceptual framework of value-creating care for older persons with incontinence (2). A critical interpretive synthesis of the literature resulted in the development of the conceptual framework (2). To gain a deeper understanding of older persons’ and health care professionals’ experiences, qualitative interviews were conducted. The empirical data were compared with and matched to the framework, in order to develop a more complete description of the phenomena (1).
The conceptual framework “the art of connectedness” was based on three themes: co-created care, personalized care, and reflective care, with three subthemes each (see Fig 1).
A purposive sample was used to achieve variations among the participants. Inclusion criteria for older persons (n=6) were: >65 years of age, living in a nursing home, having incontinence, needing toileting assistance and containment strategies, having reduced physical mobility (measured using the Barthel Index of Activities of Daily Living), and being able to express their needs. The health care professionals consisted of home care staff (n=4), district nurses with experience and education in incontinence (n=9) working in municipal care for older persons, and a registered nurse specialized in incontinence care (n=1).
Data collection was conducted after participants gave their written consent. Individual interviews were conducted with the older persons. The health care professionals were interviewed, either in individual interviews with home care staff or in focus groups with the district nurses and incontinence care nurse.
A thematic analysis with an abductive approach was conducted to search for patterns in the data. Data were analysed in six steps: (i) becoming familiar with the data; (ii) generating initial codes; (iii) searching for themes; (iv) reviewing the themes; (v) defining and naming themes; and (vi) producing the report (3). The data analysis moved between inductive and deductive steps. The first three steps were inductive. In step four, the themes were checked and compared for similarities with and differences from the themes in the conceptual framework. In step five the themes and subthemes were named after their essence, and were found to be in concordance with the framework.
Results
Older persons and health care professionals experience co-created, personalized and reflective care as values of importance in relation to toileting assistance and containment strategies.
In co-created care, the importance of respecting preferences of the older persons was highlighted by the participants, which was in accordance with the framework. This included asking the older persons what assistance they need and how and when they prefer being provided with assistance, and responding to these preferences. The participants rarely mentioned relationships and trust, in contrast to the framework. The health care professionals underlined the need to establish a dialogue with the older person, which was not so prominent in the framework.
Regarding personalized care, meeting the older person’s needs was highly valued by all participants. One example of what the older persons valued was not needing to wait for assistance. Promoting the older person’s comfort was underlined by the participants and in line with the framework. The importance of assisting the older person in such a way that they can maintain self-determination was described by the health care professionals but not by the older persons. Maintaining self-determination was given more emphasis in the framework than by our study population.
In reflective care, the older persons valued that the health care professionals had a kind approach, which was referred to as “showing empathy” in the framework. The health care professionals stressed the importance of upholding dignity for the older persons, for example by ensuring their privacy while providing assistance, which was also underlined in the framework. The need for health care professionals to have knowledge about and competence in providing assistance was underlined by the participants, and also by the framework
Interpretation of results
The results showed that value-creating continence care for older persons provided with toileting assistance and containment strategies can be viewed from different perspectives. The older persons and health care professionals highlighted different aspects (themes) of what creates value. This indicates the need to develop an instrument for the older persons themselves to self-report their experience with the assistance they are provided with. These results, together with the conceptual framework, are envisaged to lay the foundation for suggestions for items to be included in an instrument for evaluating toileting assistance and containment strategies for older persons.