Capturing the Spatial Relatedness of Long-Distance Caregiving: A Mixed-Methods Approach
Abstract
:1. Introduction
2. Long-Distance Caregiving (LDC) and the Spatial Scatteredness of Life
3. Knowledge Gap and Purpose of the Paper
- How space and spatial aspects impact the engagement in caregiving, well-being, and quality of life of the long-distance caregivers themselves;
- The significance of objective and subjective aspects of spatial relatedness;
- In order to model the space–care nexus, considerations on the availability and appropriateness of already existing geospatial data and further requirements;
- The limits of the conceptual grasp of LDC applying an interdisciplinary mixed-methods approach.
4. The Role of Qualitative and Quantitative Data Sources for a “Single Case” Evaluation
5. Materials and Methods
5.1. Research Approach
5.2. Operationalization of Spatial Relatedness Applying Spatial Semantics
- “How far do you have to drive?”/“How far is one willing to travel as a caring relative?”;
- “How difficult is it to overcome geographical distances and how often is a caring relative willing to overcome this distance?”;
- “What are the local living conditions of the person in need of support or rather care that requires (more) engagement on the part of the adult child(ren) living far away from the parent(s) in need of support and care?”
- Geographic distances in Euclidean space (= distances in miles or rather kilometers) (= metric semantics);
- Spatial-related aspects addressing all aspects of overcoming geographic distances and explain (partly) the efforts in the contexts of LDC such as topography, reachability, transport modes (= topological semantics);
- Spatial-related aspects related to the availability of infrastructure supply structures, above all professional and informal care and social support structures in the immediate vicinity of the place of residence of the cared-for persons, which are decisive for a person becoming an LDC (= causal semantics).
5.3. Decision on a Specific Single Case, Data Collection, and Particularities of the Empirical Material
- The description of the spatial constellation of the places of residence both of the interviewee and the cared-for older parent(s) and the engagement in domestic care (residential locations of the caregiver and the cared-for person(s), degree of kinship);
- The need for support or rather care of the person being cared for and the care mix (professional and informal care, support by the respondents themselves);
- Challenges related to overcoming geographical distance and the consequences for the nature or rather periodicity of support and the quality of life of the (long-distance) caregivers;
- The impacts of LDC on health and well-being of the interviewees and their coping strategies.
5.4. Using Ontologies from a Technological Viewpoint
5.4.1. Why Connecting Technologies and Humanities?
5.4.2. Relevant Ontologies and Their Standardization
5.4.3. Overview of Possible Technologies and Their Flexibility
5.5. Development and Structure of Analysis Grid Using Information Based on Single Case
- Relevant places on different spatial scales (residential community, neighborhood, the flat/house) and their relevance and function for the life, well-being, and health of the both the long-distance caregiving person and the cared-for person(s);
- Spatial constellations of relevant places, above all the places of residence and work of the long-distance caregiver and the place of residence of the cared-for old(er) parent(s), and relationships/connections between places/spaces (paths)—see also Li et al.’s research agenda regarding [11] the emotions associated with places and paths (overcoming distances);
- Characteristics of the direct living environment of the residential community of the cared-for old parent(s);
- (Eventual) changes in spatial aspects identified as relevant for LDC over a 5-year period (2013–2018) and outlook for the future as an LDC.
5.6. Explanation of Decision for Graph-Based Analysis Structures and Modeling Spatial Relatedness of Long-Distance Caregiving
- Human perception and social agreements directly influence geospatial information, when objective measurements are mixed with subjective judgements. A mapping between both [55] is a main challenge which helps to make geospatial information more meaningful;
- The identification of geographic entities is used to enable georeferencing and better translation capabilities. These identifiers are used to link entities and, in the case of knowledge graphs, to establish relations;
- The situation of LDC and its geographical reference is not a static view, but a process in time and space [56]. Distances, directions, and relations move and therefore the overall situation changes. A formal description of the LDC theme needs to consider processes in time and space;
- The modeling with geographical information incorporates vagueness, uncertainty, and different levels of granularity. The relation of these granularity levels of geographic information [57] with the semantic granularity of ontologies [58] and a qualitative information coming from an interview is an essential part of a valid knowledge graph model for LDC.
6. Case Vignette
6.1. Demographics of the Long-Distance Caregiver
- Female, in her 40s, university degree in spatial science;
- Employed: At the time of the first interview working as a teacher, currently employed in career guidance;
- Living alone and childless: “Structural deficiencies of regional labor markets create personal destinies.” … “I unwillingly have no children. I’ve changed jobs often. … I often wonder what it will be like when I’m older.” That is why she feels like “the last link in a chain”;
- Being a long-distance caregiving daughter since 2013, but does not consider herself a caregiver: “I am an intercessory, supportive, hopefully mentally uplifting daughter who is worried about her parents”;
- She has a sister and a good relationship with her and exchanges information with her about their parents. “Yes, the parents are a subject of our talks. The sister is burdened by the job. There are no grandparents. She has tried to return to […]. But there is no suitable job opportunity. She holds a university degree.”
6.2. Character Traits and Attitudes
- Her heart beats for the countryside and she is closely emotionally tied to her parents and her municipality of origin. For this reason, she can imagine returning to Z, the municipality where her parents are still living. “It’s the roots, the identity. Both compensate for the deficits that I face in the city.” … “We [her sister and herself] are attached to the parents’ house.” Additionally, in her opinion, family cohesion can compensate for the infrastructural deficits in the countryside. At the same time, she mentions that she has no friends in her municipality of origin, because they moved away, too;
- Her central concern: Staying with her parents as often as possible—not only for caregiving reasons, but also because she likes to come home. “For me distance is not a relief, it is a burden, because I have a close, positive, friendly relationship with my parents.” She does not feel like a victim; she likes what she does. “On the part of the parents there is no pressure at all.”
6.3. Employment and Migration Biography
- She was born in Austria and grew up in the countryside “in a political district with high unemployment”;
- Since university days she has been living and working in urban areas, having several centers of life;
- In 2013, she moved to X “for the love of her profession”, as she could not find an adequate job in financial respects. “This is a problem for people who are living alone: They earn too much to die, too little to live.” If she had stayed in […] with a badly paid job, “it would have all gone up in the car fuel”;
- She has always maintained regular contact with parents via information and communication technologies: “The virtual connection helps to make things a little easier. You have the feeling that you are there. But it doesn’t take away the guilty conscience that you still have, because you can’t give immediate support when it counts”;
- She has found commuting a burden, especially in the past: “The quality of life goes down the drain. … doing the housework, seeing that food is there and the laundry is done … But the household activities remain the same”;
- In 2018 she changed her job and returned to her former place of work and education. Since she has been living here again, the time and effort required for LDC has significantly reduced. Now it takes her about an hour by car getting from Y to Z, three hours getting from X to Z: “That is what makes the difference.” Returning to Y was accompanied by an increase of the frequency of visits and a shortening of the visit interval: “Yes, the frequency has increased significantly, because the journey is now only one hour in one direction. This means a maximum of two hours of concentrated car driving on the motorway on weekends.”
6.4. Extra-Familial Social Networks
“In Y, I built my social networks over the years. In X, I have no social networks. But I wanted to finally pursue my dream job. … I meet my friends who are living in Y every three to four months. This year (as of the time of the first survey in 2015), I met them once for a cup of coffee.”
6.5. Medical History, Living Environment, and Social Network of the Cared-for Parents
- Medical history started at the beginning of 2013: one parent suffered from brain cancer (four surgeries between 2013 and 2017); she moved to Z before the diagnosis;
- One parent suffers from heart disease since 2014 (a surgical procedure was undertaken in the same year);
- Both of the parents are physically impaired, one parent takes medication regularly; both parents are not allowed to perform heavy lifting and should avoid exposure to direct sunlight;
- Especially the time immediately after the first surgical intervention on the mother was difficult for all of them: “Leaving […] was not easy, leaving the parents behind, who were overstrained. The mother was always a central figure (note: In the household, there was classic division of tasks between the two), the father was in shock … But it was good luck that the sister was on maternity leave at this time.” (Note: Her sister now (as of 2015) lives in X, the same municipality of residence and work of the interviewees). During this time, the respondent took over work in the parents’ household and in the garden, whenever possible;
- The situation has calmed again: car driving, climbing stairs is again possible for both of them. The living environment itself is no longer a problem (the house is a bungalow): “That was good luck.” But gardening is still a problem. Living independently in their own four walls is still possible to a large extent, there is no need for accompanying co-resident professional caring support;
- One parent has to go to hospital regularly for check-ups. The father’s brothers take over the transport service to the therapies in the hospital. “Taking the bus would have been conceivable, but there is no public transport”;
- “The parents’ social network is the family. The father has four brothers, one of whom is a direct neighbor. … The parents’ friends weren’t any help to them, but the father’s family was … There is no additional support from neighbors, associations, or the church.”
6.6. Outlook on the Future as a Long-Distance Caregiving Daughter
- On the part of the parents there is a tendency to want to live closer to the children, but “it is difficult to resettle someone of this age from a rural region to another place. They are not urban people.” Moreover, “the housing situation also ought to be clarified”;
- When observing the ageing of her parents, the interviewee thinks about what basic infrastructural infrastructure should be available in the parents’ municipality of residence. “I critically observe the development: Ongoing concentration in the metropolitan areas, the rural regions are lagging behind. … Grocery stores, small retail shops, public transport and buses are rare. Not imaginable, if you live in X.” With this, the interviewee expresses her concern about the changing structures, above all the thinning out of the infrastructure, which is important to maintain the quality life at a very old age;
- Regarding whether she would talk to the mayor about domestic or stationary care facilities and opportunities, the interviewee replied: “When I am here, I don’t have time for that.” Furthermore, she is not in Z during the mayor’s office hours;
- Although she is anxious about the father’s physical fitness [61], she currently has no concrete reason to worry about the distant future. Nevertheless, she has already talked about nursing and care such as the choice for a certain nursing home: “… unimaginable, because up to now all of the family members have been cared for by relatives and not in a nursing home.”
7. Results and Discussion
7.1. Breakdown of Provided Spatially Related Information
- X = place of work and residence at time of survey 1 (interview in 2015)
- Y = place of work and residence at time of survey 2 (written survey in 2018)
- Z = municipality of origin and residential municipality of the cared-for older parents
7.2. The Graph-Based Knowledge Structure
8. Conclusions
- Grasp the principles of the space–care nexus in the context of long-distance caregiving quickly and comprehensively and thus make visible the heterogeneity of the long-distance caregivers in terms of their burdens and needs;
- Stimulate a critical discussion about geographical proximity, which goes beyond a categorization according to distance classes [11], and the limits of the separability of objective and subjective components in terms of content;
- Take greater account of the importance of the time dimension of long-distance caregiving careers and the variability of relevant aspects in order to better be able to explore the relevance of the time scale as well as the limits of interpolation between different points in time;
- Initiate a spatial turn within the debate on the various issues of long-distance caregiving with regard to the discussion about the ability to influence spatial-related aspects in order to maintain well-being and quality of life of all persons involved in long-distance caregiving and, thus, to critically reflect on the suitability or accuracy of strategic demand planning in the context of elder care and health promotion, which, up to now, exclusively is based on demographic indicators and to raise the awareness of the issue of long-distance caregiving among key players in social and health care [Fischer and Jobst 2019];
- Further develop methodologies for the numerical determination of long-distance caregivers at (pre-defined) spatial scales and in spatial settings (urban, rural, suburban, remote).
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
Appendix A
Places (Activities/Functions) | Communities (Activities/Functions) | Other Persons and Aspects | Associated Memories and Emotions |
---|---|---|---|
X (urban municipality) | Family (“sister and nephew”) | “My dream job” “New friendships” “Inconvenient communication with the parents using information and communication technologies” | |
Her first flat (located in the city center) | “ICT-supported communication with the parents” | “The renter” “Cultural activities, tourists, pedestrian zone” | No additional information provided |
Her second flat (“the room”) | “Working” “ICT-supported communication with parents” “Making new friends with both room colleagues” | “Little space” | |
The flat of the sister | “Family, nephew, being godmother, babysitting, talking” | No additional information provided | No additional information provided |
At work | “Colleagues, interactive working with the pupils, new friendships and leisure activities with colleagues” | No additional information provided | No additional information provided |
Y (urban center) | “Friends and social network” “Job, education” “Sports, nature, culture” “My home” | “Socializing and cordiality” “Education, maturing, development” “Satisfaction and happiness” | |
The flat | No additional information provided | “The view, nature, living space” | No additional information provided |
University | No additional information provided | No additional information provided | No additional information provided |
Z (rural municipality) | “Parents, grandparents and family” “Social contacts” | No additional information provided | “Love, childhood, coziness, roots, being earthed, trust and openness, security, reliability, home” “Honesty, down-to-earth” “Wideness, nature, and silence” “Responsibility” |
The parents’ house and garden | No additional information provided | No additional information provided | No additional information provided |
Appendix B
Relevant Aspects Associated with the Dislocation of the Places of Residence, the Spatial Scatteredness of Life, and the Challenge of Overcoming Distances at the Time of the First Consultation in 2015 | ||||||
---|---|---|---|---|---|---|
Relevant Places | Number of Relevant Places and their Function | Reasons for Staying/Being Present on Site | Emotions | Other Relevant Attributes of the Places | Relevance for LDC Situation and Influence on Well-Being and Quality of Life of Both the Long-Distance Caregiver and the Cared-for Old Parent(s) | Implications for LDC Situation as well as for Well-Being and Quality of Life of Both the Long-Distance Caregiver and the Cared-for Old Parent(s) |
Places of residence of the long-distance caregiver | Two places of residence: Place of residence 1 (X) = municipality of work = secondary residence = place of residence of the sister Place of residence 2 (Y) = place of education = primary residence = place of residence of friends Third place of relevance (Z) = municipality of origin = place of residence of the parents | Dream job; purpose-oriented stay; staying as long as necessary rare staying; visits as often as possible every weekend (Friday afternoon to Sunday afternoon), if possible, and during school holidays | Emotional ties (sister and nephew) City Greater emotional bonding in comparison to place of residence 1 (X) Here is where the heart beats. | City, very good job opportunities as well as infrastructure and cultural offers City Rural municipality, an hour’s car drive from the next urban core zone [76] | Spatial scatteredness of life and inner conflict commuting as a burden Neglecting of extra-familial social networks | Reduction of number of places of residence: 2 → 1 Reduction of number of spatial centers of life: 3 → 2 From now on 2 positively connotated centers of life Shorter distances between the places of residence of the caregiver and the parents imply shorter intervals between the visits |
The flats of the long-distance caregiver | At place of residence 1: A base during the week place of work and also cordiality at place of residence 2 | Purpose-oriented; daytime marginal times; a place to work No further information | A place of retreat | Co-residence with two other persons rental flat (no further information) | Cost-effectiveness and expediency | |
Place of residence of the cared-for parents | = place of origin/place of childhood = place of care and support = place of leisure = a place to rest | Staying as long as possible as well as often as necessary; usually on weekends (Friday afternoon to Sunday afternoon) and during school holidays | Here the interviewee feels at home and secure | Mentioned available infrastructure (as of survey 1): One practitioner, pharmacy, motorway exit, the latter is considered to be “an advantage for the municipality” The proximity to nature family support | Observation of infrastructural changes (thinning out) and worries about care needs of the parents in later life (they want to stay there, in their own built house; informal domestic care is a long-standing tradition in the interviewee’s family She is thinking of returning to Z after retirement | |
The parents’ house | = place of support = place of cordiality = accomodation during the visits | Whenever she visits her parents or looks after them | Place of childhood Both the interviewee and her sister are emotionally attached to the parents’ house; the interviewee would like to take it over one day | The house and the garden; not barrier-free | She lives there when he’s with her parents. Therefore, no additional distance is to be overcome as well as no additional expenditure for commuting apply stress and bad conscience: “Can’t support the parents in gardening” | Prospects for a probably long-lasting caregiving career: The parents want to stay in their own four walls (“You don’t plant an old tree”) |
The motorway | The direct and fastest connection between the two places of residence (caregiving daughter & parents) | As long as necessary, as quick as possible | The fastest connection; nevertheless, the motorway is experienced as a burden: “It is necessary to concentrate fully for three hours” | Dangers: Traffic & construction sites | Distance and topology justify the choice of transport mode (own car) = explanation of physical and psychological strains in the context of overcoming distances (X → Z) “The weekend trips to my parents’ house in Z meant all things considered more than six hours of concentrated driving on the motorway” | |
Health care facilities for medical and nursing care (hospitals, medical practices) | Place of medical treatment for the parents | No relationship identified | She would like to support her parents by taking them to their medical treatments; but due to the extensive distances to overcome she can’t |
Appendix C
Routes and Directions | Distances and Time Efforts | Implications for the Life as Long-Distance Caregiver | Changes between the Two Survey Dates and Consequences for the Spatial Behavior of the Long-Distance Caregiver and the Amount of Support for Her Parents |
---|---|---|---|
X → Z Z → X | Road distance (in km): 270 Travel time (by car): 2 h 53 min | Explanation of why she can only support the parents selectively and cannot visit them regularly She can hardly maintain her social contacts in Y Distance and travel time as reasons for being always in a hurry: “On Fridays getting from X to Z as early as possible”, but “this often doesn’t work because there is always something to be organized in X” “Departing from Z as late as possible” | Since 2017, X no longer plays a role in her life |
X → Y Y → X | Road distance (in km): 195 Travel time (by car): 2 h 3 min No further information provided by the interviewee | ||
Y → Z Z → Y | Road distance (in km): 92 Travel time (by car): 1 h 20 min | Since 2017, only 1 h travel time per direction, shorter visit intervals, and greater flexibility | |
Z → hospital hospital → Z | Road distance (in km): 57 Travel time (by car): 43 |
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Spatial Semantic Category | Evidence-Based or Assumed (Very Likely) Relevant Spatial Aspects | Reported and (Assumed) Implications for the Long-Distance Caregiver |
---|---|---|
Metric (position of relevant places and distance related to Euclidian space) | Geographical distances between the places of residence of the caregiver and the cared-for person (national as well as international) [9] | Ambivalence of feelings [24] and “unique difficulties that are less frequently experienced by local family and friends providing care” [25] Feeling of being excluded and under-informed [4] Being expected to keep in contact with the old(er) parent(s) in need of support or rather care [26] Having the feeling of not doing enough for their elder parent(s) [2,10] |
Topological (traverses between places/influence on reachability) | Topography Connection of places of residence to high ranking modes of transport (i.e., motorways) | Efforts for overcoming geographic distances [7] Maintaining work/life/care balance [2] Influence on kind of provided support for and visiting the cared-for person [3,6] “Watching the deterioration of their loved one” [7,27] Use of telecommunication to keep in contact with the cared-for person or rather to stay informed [28,29,30] Cost expenditure and choice of means of transport emotional stress [7] and opportunity to take advantage of health promotion offers [1] |
Causal (attributes/qualities) | Availability and quality of public transport [31] Availability of informal and formal elder care support and infrastructure in the residential municipality of the domestic cared-for person ((potential) co-resident caregivers, local caregivers, neighbors, friends) Quality of the built environment of the cared-for person (construction-related barriers, maintenance of the garden) | Reasons for being worried Determination of amount of engagement [31] Reason for engagement in on-site domestic care and support for the cared-for person [7] |
Themes | Introductory Texts and Questions (Verbatim) |
---|---|
Current state of health of the parents and requirements for the respondent as caregiving family member | “In our first interview on 19 May 2015, you described yourself as a caring daughter who acts as she does, of her own free will and without pressure from her parents.” Question 1 “Please describe the course of your parents’ illness since May 2015 and the associated time and—if you wish to do so—the psychological requirements for you as a caring daughter.” |
Spatial centers of life and space-related associations | “Over a period of xy years (please add) you had three spatial centers of life: X–Y–Z.” Question 2 “In retrospect, what do you associate with X?” Question 3 “If you had to depict X graphically, which places and emotions would you depict graphically, and which symbols would you use for this?” Question 4 “What do you associate with Y?” Question 5 “If you had to draw a picture of Y, which places and emotions would you draw, and which symbols would you use?” Question 6 “When you think of Z, then you think of …” Question 7 “If you had to draw a picture of Z graphically, what places and emotions would you draw, and what symbols would you use to do so?” |
Emotions associated with being on the move | “In the first interview you addressed the challenge of car driving.” Question 8 “What do you feel when you are driving on the motorway (a) from Y to Z, (b) from Z to Y?” Question 9 “What do you feel when you pass the place-name sign of Z (a) upon arrival, (b) upon returning to Y?” Question 10 “Did the return to Y have an influence on the frequency of commuting between the different places of residence? If so, to what extent? If not, why not?” |
Feelings on the Road | |
On the way to the parents (Y → Z) | On the way back from the parents (Z → Y) |
“Joy to see the parents” | “Focusing on the social environment” |
“Inner well-being, coziness, inner brightness” | “Friends, colleagues, social network” “Reliability, cordiality, communication” |
“Roots, security” | “Job” |
“Responsibility” | |
“Focus on important things” | |
Feelings on Arrival and Departure | |
When she passes the Z’s place-name sign, she feels … | |
On arrival at the parents (Y → Z) | On departure from the parents (Z → Y) |
“Inner well-being, happiness and joy” “Simply a good feeling to be always welcome” | “Looking forward to the next visit, hoping that the parents are well and that they enjoy life in the meantime” “I am glad that the distance to Y is only an hour’s car drive and that I can go to Z anytime I need to” |
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Fischer, T.; Jobst, M. Capturing the Spatial Relatedness of Long-Distance Caregiving: A Mixed-Methods Approach. Int. J. Environ. Res. Public Health 2020, 17, 6406. https://doi.org/10.3390/ijerph17176406
Fischer T, Jobst M. Capturing the Spatial Relatedness of Long-Distance Caregiving: A Mixed-Methods Approach. International Journal of Environmental Research and Public Health. 2020; 17(17):6406. https://doi.org/10.3390/ijerph17176406
Chicago/Turabian StyleFischer, Tatjana, and Markus Jobst. 2020. "Capturing the Spatial Relatedness of Long-Distance Caregiving: A Mixed-Methods Approach" International Journal of Environmental Research and Public Health 17, no. 17: 6406. https://doi.org/10.3390/ijerph17176406