Adequacy of care provision in long‐term home nursing arrangements: A triangulation of three perspectives

Abstract Background A growing proportion of older people in Germany receive long‐term care from informal and professional caregivers at home. Their personal assessment of the individual care situation is scarcely considered. Aim This study aimed to explore the subjective views of care recipients, informal and professional caregivers on the adequacy of care provision in long‐term home care arrangements. Design and Methods Qualitative semi‐structured face‐to‐face interviews were conducted with ten care recipients, ten professional caregivers and eight informal caregivers to capture their perspectives on the adequacy of the care received and delivered. Qualitative content analysis was applied using MAXQDA software. Results All groups highlighted that they perceive an underprovision of care, even though their explanations differed. The underprovision was mainly described regarding the quality rather than quantity of services. It occurs especially in interpersonal relationships and social inclusion, where the gap between the self‐perceived current situation and the desires of those affected is most prominent. The ambivalent impact of home care on social participation becomes apparent. Perceptions of an overprovision of care range from the view that it appears mainly with respect to informal care to the statement that it is currently non‐existent or generally impossible. Misprovision of care is experienced as serious whenever the interviewees face the challenge of preserving existing abilities or regaining certain skills.


| BACKG ROU N D
As life expectancy rises and chronic diseases accumulate, the likelihood of long-term assistance from others' also increases (Schnitzer et al., 2019). In 2017, 3.41 million Germans were in need of long-term care (LTC) (German Federal Statistical Office, 2018) and this high proportion is still rising; 81% of these care recipients were 65 years and older and 35% were at least 85 years old. Most of them are cared for by informal caregivers-"a person who provides unpaid care to someone with a long-term illness, disability or other long-lasting health or care need, outside a professional or formal framework" (Eurocarers & European Cancer Patients  Coalition, 2017, p. 10)-or receive both formal and informal care at home (German Federal Statistical Office, 2018, p. 5). Thus, at least three groups are directly involved in long-term home care (LTHC): informal caregivers (ICs), professional caregivers (PCs) and care recipients (CRs). Their situation is characterized by different interests and partly conflicting wishes, expectations and needs that reflect juxtaposed realities.

| INTRODUC TI ON
For ICs, care takeover influences all aspects of their daily life (Bauer & Sousa-Poza, 2015) and is accompanied by serious changes in their own lifestyle for a considerable period of time (DAK, 2015).
Compared with other European countries, the situation of PCsespecially geriatric nurses (a large share of nurses working in LTHC hold a specialization in geriatric nursing; home health nursing is not a specialization for nurses in Germany)-in Germany is characterized by the fact that they receive less appreciation of their demanding work with, at the same, less attractive working conditions (Theobald, Szebehely, & Preuß, 2013). Moreover, nursing in Germany is also distinguished by the low share of academization and uneven education (Appendix S1). This contributes to the fact that especially geriatric nurses often leave the profession after a few years (Wendsche, Hacker, Wegge, & Rudolf, 2016).
The developments described need to be considered in the light of the compulsory German long-term care insurance (LTCI), which is designed as partial coverage insurance (European Observatory on Health Systems & Policies, 2016). Guided by the principle of subsidiarity, the LTCI's principle of "home nursing before nursing home" becomes increasingly problematic given the fact that societal and familial circumstances have changed since its implementation in 1995 (Theobald & Luppi, 2018). The situation delineated above is aggravated in sparsely populated, economically weak regions of Germany, such as Mecklenburg-Western Pomerania, which is particularly affected by demographic change and care dependency.
Although an extensive body of literature exists on the growing need of older people for LTC in their home environment, data reflecting the evaluation of LTCI coverage and access to affiliated financial and personal aids as experienced by those affected remain scarce (Scheil-Adlung, 2015). This neglect ignores potential underprovision, over-and misprovision of care and their negative impact on individual and societal level. Underprovision is defined as "Failure to deliver a service that is highly likely to improve the quality or quantity of life" (Elshaug et al., 2017, p. 192). In the nursing context, it is referred to in the special appearance of "missed care"/"care left undone"/"unfinished nursing care." Overprovision refers to "a service that is unlikely to increase the quality or quantity of life" (Elshaug et al., 2017, p. 192 (Seidlein, Buchholz, Buchholz, & Salloch, 2019a, 2019b. Semi-structured face-to-face interviews (Appendix S2) were conducted between October and December 2016 by AHS and two graduate students trained and supervised by the research team.

| ME THODOLOGY
The interviews were carried out at each participant's preferred location (at home, at the workplace, at the researcher's office). Five interviews were conducted in attendance of the interviewees' significant other. Interviewees were asked to report on the care situation in home nursing arrangements, respectively, about how sufficient he/she perceives the help given or received at the moment, whether he/she feels well cared for and, in case if not, for what reason. The interviews were audio-recorded and transcribed verbatim. After transcripts have been read and re-read to engender familiarization with each interview, the principles of qualitative content analysis, according to Mayring (2014, p. 53ff.), using MAXQDA 12 software have been applied. Data analysis was driven deductively (questions from the interview guide) and inductively (new themes raised by the interviewees). Each interview was coded line by line by two researchers (AS and MB, or AS and IB). Codings (coded text passages) and categories (denomination of the coded passages) were reviewed for (dis-)similarities to result in a consented form for the next interview and so forth. Unclear passages were discussed in the multidisciplinary research group (AS, IB, MB, SS) until consensus was reached.

| RE SULTS
None of the persons approached declined to participate in the study.
The sample (Table 2) consisted of N = 10 CRs (mean age: 80.7 years) affected by multiple chronic conditions and receiving LTC at home by ICs (N = 8) and PCs (N = 10).
The interviews lasted between 16 and 134 min, with an average of 48 min each. The analysis revealed two themes: first, the "LTCI system as a barrier to care" with the three sub-themes "unrealistic assessment instrument," "obscure assessment process," "Individuals' competence"; and second, "Care overlooking individual needs" with the three sub-themes "overprovision," "underprovision" and "misprovision."

| LTCI SYSTEM AS A BARRIER TO CARE
Access to statutory benefits depends on the definition and assessment of the being "in need of care" in terms of the German Social Security Code XI. This theme summarizes the problems depicted by the interviewees regarding the current design and implementation of the LTCI.

| Unrealistic assessment instrument
Informal caregivers described the current assessment instrument to determine care dependency as escapist, "construed by someone who has never cared for anybody" (PA13) and resulting in inadequate allowance. Counting the time needed for single actions (such as getting dressed) leads to a delusive "Minute Care" that does not reflect the true needs. The PCs agreed with that, explaining that some older people in need of a Care Level due to specific restrictions do not get it. From the PCs point of view, the criteria are oriented towards symptoms and concentrate on deficits instead of searching for causes. The focus on bodily needs and the failure to take subjective feelings and needs into account was also stressed by the CRs.
PCs summed up that the Care Levels are insufficiently differentiated and that many of the older persons do not get the proper one. As a result, they must pay extra because their Care Level does not cover the costs.

| Obscure assessment process
The assessment process was criticized as protracted and non-transparent by all three groups. PCs stressed that the assessment represents only a snapshot-where the CRs also exhaust themselves to show what they are still able to do-and that, instead, there should be more appointments to assess the care needs more realistically.
In their opinion, the assessment "unfortunately depends very, very much on the evaluator" (PP8) and, thus, they saw great differences in the quality of the assessment process (e.g. observation and questioning of the CR) and in the results, where they often perceived misguided judgements. For this reason, the PCs try to be present during the assessment as they know on what the result depends. They also reported on prolonged processes and the necessity of entering multiple objections to get a Care Level.

| Individuals' competence
Bureaucratic obstacles were described as a major concern and were also seen as one reason for underprovision as those affected cannot overcome them. Some ICs reported that they did not understand how the system works and that for them as laypersons it is not possible to assess the services' adequacy. CRs also stressed that knowing the system and people working in the insurance companies was helpful for them and facilitated access to aids and therapeutic appliances. The insurance company's authority to decide about care aids (equipment) was mentioned as incomprehensible, not only because it takes too much time, but also that the clerks do not have the expertise to decide on the needs of CRs and ICs. The PCs in addition challenged the medical knowledge and nursing competence of some evaluators.
All groups highlighted that they set their hope in the forthcoming five "Care Grades." This should affect the current care situation positively as it announces a system that goes beyond physical needs and focuses on the mental and social dimensions of care needs.

| CARE OVERLOOKING INDIVIDUAL NEEDS
The evaluation of the care provided varied not only in the views of the different groups, but also with respect to the different aspects of daily life. This theme depicts appearances over-, under-and misprovision of care and factors contributing to them. and demand that everything is done by the professionals right from the beginning. They are described as "lazy" (PP5) and "like to be indulged" (PP8). They let themselves go and even use different strategies to convince the professionals that they need more assistance or play the professionals off against each other to make them do what they want. At the system level, financial disincentives lead to offers of services and "showering CRs with services" (PP7) that are not necessarily needed because the parties involved strive for full use of the Care Level awarded by the LTCI.

| Overprovision of care
Overprovision of care is non-existent for all CRs with respect to professional nursing but occurred regarding ICs due to "too much" solicitude. They described that their relatives did not know or did not understand what they are still able to do in daily life and, therefore, feel overprotected when relatives take away tasks that they could still do by themselves. CRs do not necessarily mention this subjective feeling of overprotection and overprovision of care to their ICs as they do not want to "affront" them and are afraid to hurt them.

| Underprovision of care
The ICs complained about a wide range of underprovision of care.
This comprised mainly personal aid for them and the provision of care equipment. They particularly stressed that there is less incontinence material provided than is needed, which they described as "a really big mess (…) The insurance company recently pays only 24.99 € monthly, but you cannot look after someone with this amount of money. This is beneath contempt. This is contrary to fundamental human rights" (PA2).

| Misprovision of care
Interviewees also mentioned several fields where they perceive avoidable harm for the CRs due to the work not being done properly (e.g. regarding standards of professional practice).
Firstly, the CRs bring up an imbalance of the cost-benefit ratio, for example regarding additional therapies that aim at retaining physical abilities and independence. One CR reported her experiences concerning prevention and rehabilitation: "Once they also prescribed speech therapists, but the circumstances, getting ready and everything, the waiting time, to get an appointment, they are more negative than the positive effects of the therapy" (PB1). Furthermore, the CRs stress that the care is quantitatively provided but lacks high quality. They also reported that their personal expertise is not taken into account, which is not only frustrating for them, as they not only perceive themselves as experts on their situation and needs, but this practice also ignores the usage of precious resources inside the CR.
The ICs described the care products provided as being inadequate for their needs: "I constantly buy disposable nappies because they are not included in the program, but they send me so many bed undersheets I don't need, that I can wallpaper my flat with them" (PA13). Furthermore, they indicated the missing and/or not strict enough monitoring of the home nursing services. The official quality reports seem to be susceptible to manipulation, as they experience that not all criteria are met, while nearly all home care services get a good rating. They have learnt that "it does not mean anything if someone calls himself/herself a nursing professional. That does not mean that he/she is able to care for other human beings" (PA2). They described their experiences of what they perceive as professional misbehaviour, which is mainly missing empathy, as reflected in what an IC told a PC when she perceived such behaviour: "You are not sorting screwdrivers here, but you are working with human beings and they are dependent on you and your good care and if you are not able to do that you are in the wrong job" (PA2). They also observe mistakes and mishaps by professionals that might lead to harm for the CR. Finally, not only professionals but also unqualified personal (e.g. home helps) are described as taking over nursing care duties.

| D ISCUSS I ON
All interviewees reported serious problems with the assessment tools and processes as well as with over-, under-and misprovision of care in their various manifestations. When interpreting the results, it should be noted that this study was carried out at the time of the implementation of a healthcare reform (Appendix S1), which explains the hopes placed in the system change by the interviewees.
Even though the individuals affected represented in our sample have placed high expectations in the amendment, first data have shown that the claiming of benefits and the quality remain insufficient even after the latest reforms (Eggert, Storch, & Sulmann, 2018).
The study results suggest that care needs experienced subjectively and those objectively assessed and adjudged on a statutory basis do not necessarily match. Furthermore, professionals might assess and weigh the care needs in a different way compared with the common assessment instruments. Our findings thus confirm other study results (Bergmann & Brühl, 2017;Lipszyc, Sail, & Xavier, 2012, p. 24). Moreover, the subjective need for LTC does not lead inevitably to a formal demand and, thus, provision of care.
It is known that individuals with lower social status are more likely to be exclusively informally cared for and to receive fewer support, while more frequently applying for care allowances (Kruse & Schmitt, 2016). This fact points to one aspect of social inequality in LTHC (Möller, Osterfeld, & Büscher, 2013)  for the CR. This, however, can be a fallacy, as the phenomenon of "existential loneliness" occurs even in such arrangements and that its appearance is judged differently by CRs and their ICs and PCs (Larsson, Edberg, Bolmsjo, & Ramgard, 2018;Sundstrom, Edberg, Ramgard, & Blomqvist, 2018).
The study's methodological key strength is the openness which creates narratives that allow an in-depth description of the current practices. However, study limitations arise from the sample size and the missing generalizability of the results that are well-known limitations in qualitative research. Our sample is homogeneous with regard to age and socio-cultural background. Further research should thus build a sample with participants from different ethnicities and age. In addition, the nature of the disease(s) which are underlying cause(s) for care dependency might also influence the specific needs and should thus be part of a purposive sampling.

| CON CLUS IONS
It can be summarized that the present problem-solving strategies for the shortcomings of LTCI reveal social inequality in LTHC arrangements. Thus, the results can be used to support the practitioners with the identification of individuals at the greatest risk of over-, under-and misprovision. The results presented can serve as a basis for designing a quantitative survey on the effects of the latest LTCI reform, evaluating specifically the domains of over-, under-and misprovision described.
Future problems concerning the supply and organization of LTHC in arrangements combining informal and formal care remain urgent and unresolved; a task that politics should attend to in further advancement of the LTCI based on such cross-sectional studies.

ACK N OWLED G EM ENTS
We wish to acknowledge NJ and CK for their engagement in data collection.

CO N FLI C T O F I NTE R E S T
All authors (AHS, MB, SS, IB) declare that they have no financial or non-financial competing interests. All authors declare that they have no financial relationships that might be perceived as a potential conflict of interest.

AUTH O R CO NTR I B UTI O N S
All authors (AHS, MB, SS and IB) analysed and interpreted the data using qualitative methods. AHS, SS and IB conceptualized the paper and contributed essentially to the writing of this manuscript. AHS, MB, SS and IB read and approved the final manuscript.

E TH I C A L A PPROVA L
The study was approved by the institutional review board of the University Medicine Greifswald (reference number BB123/16).
Written informed consent was elicited from each study participant.