A qualitative design was chosen to gain insight into caregivers' descriptions of their experiences with healthcare services when caring for home-dwelling parents with dementia. Their experiences are embedded in and formed by their social contexts (Creswell & Creswell, 2018). The study used focus group interviews to describe the caregivers' experiences with healthcare services, leading to a deeper understanding through interactions and discussions (Morgan, 1997). The 32-item COREQ checklist is used in reporting the study (Tong et al., 2007).
Like that of other Nordic countries, Norway's public welfare model is constructed to take care of persons with dementia with supplements from informal caregivers (Norwegian Ministry of Health & Care Services, 2015). Specialist care is provided by regional health services and consists of hospitals and specialised units such as memory clinics and geriatric hospital wards. Norwegian municipalities are through community healthcare services responsible for primary care like general practitioners, home care, day-care centres and nursing homes (Norwegian Ministry of Health & Care Services, 2018). The informal care provided by adult children to parents with dementia includes for example assistance with practical tasks, transportation, support for personal care and medical treatment, but mostly emotional support, including spending time talking with the parent, visiting or calling to ensure that he or she is safe (Norwegian Ministry of Health & Care Services, 2015). According to national legislation, healthcare professionals in the community are obligated to give information, training and support to caregivers with especially onerous tasks (Health Personnel Act, 1999; Municipal Health Services Act, 2011). The Norwegian national guidelines for dementia care recommend services for persons with dementia and their caregivers to be person-centred, holistic and well-coordinated. Most of the support offered to caregivers takes the form of general information, courses in caregiving and respite stays in day-care centres and nursing homes (Norwegian Directorate of Health, 2018). The participants in this study had home-dwelling parents with dementia. They lived in urban areas or rural districts in different parts of a large municipality in western Norway.
This study is part of a PhD project, where a previous study focused on caregivers' individual motivational drivers (Dombestein et al., 2020). Caregivers' experiences with healthcare services are explored in this focus group study. A sample of participants from the first study volunteered to join the focus group interviews.
Purposive sampling (Polit & Beck, 2018) was used to select participants who shared certain characteristics and had the potential to provide rich, relevant and diverse data. To be included in the study, the participants had to be over 18 years old and registered as a primary or secondary caregiver of a parent diagnosed with dementia receiving healthcare services in the municipality. Adult daughters and sons who met the inclusion criteria were identified and recruited by a project nurse working as a coordinator in the community. She was instructed to recruit both male and female caregivers. She telephoned 31 caregivers. Five declined to participate, citing limited time or energy. Author HD called the participants who had agreed to be contacted, and 21 were interviewed individually (Dombestein et al., 2020). Of those, 15 agreed to participate in the focus group interviews.
Data collection procedures
A semistructured interview guide (Malterud, 2012a, 2012b) with open-ended questions was developed with three main themes (see Table 1). The three themes were based on information required through the preceding individual interviews in which participants were asked to describe support structures that influenced their motivation to continue caring for their parents. Their responses were summarised and formed the basis for the contents of the interview guide.
TABLE 1. Interview guide with three main themes and belonging illustrative questions
The data collection was conducted over a 2-month period in 2017, and the focus group interviews took place in a meeting room at the university. Author HD moderated all three focus groups; coauthor AN was a comoderator in two of the groups, and a research fellow in one group. HD facilitated the group discussions while the comoderators made important clarifications, and took notes on group dynamics, participant interaction and nonverbal communication (Malterud, 2012a). HD is an experienced nurse trained in interviewing and consulting older persons and their caregivers. All participants were informed that the study was part of a PhD project. In the beginning of the focus group interviews the participants appeared a bit reserved, having met only the moderator once before. After some ice-breaker questions around the table, a trusting atmosphere was established in which the participants felt comfortable discussing their experiences and expressing their opinions.
Each interview was conducted in one session that lasted 92–106 min. The same interview guide was used in all focus groups. The participants did not see the list of questions prior to the interviews to reduce the risk of predetermined responses and support an open discussion. The focus group interviews were digitally audio recorded and then transcribed verbatim by author HD. The transcripts were not returned to participants for comments; their intuitive experiences were essential for the aim of the study.
Practical concerns decided the combination of participants in each focus group; participants signed up for the time and date most suitable for them. The 15 participants were therefor randomly assigned to each of the three focus groups. Group 1 consisted of two daughters and three sons; group 2 of five daughters; and group 3 of three daughters and two sons.
A total of 10 daughters and five sons participated. None of the participants had recently been sharing a household with the care recipient, and all caregivers were also holding paid jobs. Eight of the participants had parents living alone, and in seven cases, the parent with dementia lived with her or his spouse. Table 2 shows the participants' characteristics.
TABLE 2. Characteristics of participants, N = 15 (%)
Table 2 shows the variation in caregivers' age, gender, education, job status and the parents' household status.
Systematic text condensation was used to analyse the data as it allows focusing on the particular and contextual while abstracting data (Malterud, 2012a, 2012b). The analysis consisted of four steps:
- All authors independently read the focus group transcripts to obtain an overall impression and to identify preliminary themes. This was followed by a data analysis workshop where discussions led to revised themes.
- Author HD identified meaning units and quotes reflecting each theme and developed descriptions of code groups.
- Descriptions reflecting the code groups were discussed among all authors before reorganising, renaming and eliminating code groups. Units of meaning were then split into subgroups and the contents in each subgroup were condensed.
- The contents of the condensates were synthesised into three result categories that described caregivers' experiences with community healthcare services to stay motivated as caregivers.
Table 3 contains an excerpt of the analytical process. The data material was organised with NVivo 12 (QSR International, 2019) to systematise and identify meaning units related to the code groups.
TABLE 3. Excerpt of the analysis process using systematic text condensation
Example on excerpt from the full-text section.
The study was performed in accordance with the Helsinki Declaration (World Medical Association, 2008) and approved by the Norwegian Centre for Research Data (No. 48,276). All participants gave their written consent to participate and were informed that they could withdraw at any time without repercussion. They were also informed that the analysed data would be grouped so that no individuals could be identified in any reports or publications from the study.