Caregiving for ageing parents: A literature review on the experience of adult children

Abstract

Background:

More and more adults in their fifties and sixties are confronted with the need to support their ageing parents. Although many aspects of filial caregiving have been researched, a well-documented and comprehensive overview of the caregiving experience is lacking.

Aim:

This study aims for a better understanding of the caregiving experience of adult children by generating an overview of main themes in international research.

Method:

A literature review of qualitative studies, focusing on the experiences of adult children caring for their ageing parents, was performed. The electronic EBSCO databases Academic Search Premier, CINAHL and PsycINFO, and Google Scholar were searched to identify relevant qualitative studies published between 2000 and 2017. The ‘SPIDER’ eligibility criteria directed the approach. The quality of studies included was screened with the assessment sheet designed by Hawker and colleagues. The experiences reported were analysed and themes were synthesized.

Ethical consideration:

Ethical requirements were respected in every phase of the research process.

Findings:

Nineteen qualitative studies met the inclusion criteria. The quality of the relationship with the parent appears to be an important determinant of the children’s caregiving experience. Within this context, three themes were found: caregiving as an emotional rollercoaster, a normatively demanding experience and an opportunity for personal development.

Discussion:

Children caring for their ageing parents have to deal with a wide range of contradicting and conflicting norms and values. Implications for healthcare professionals and future research have been discussed.

Conclusion:

Caring for ageing parents is a continuous quest for giving the best possible care and living up to one’s personal values, within the context of the parent’s declining health. Professionals who support filial caregivers should address not only practical responsibilities but also the normative questions and moral considerations caregivers are dealing with.

Keywords

Ageing parents filial caregiving experience review

Introduction

A growing number of people around the world are living to an increasingly old age, thanks to an improved standard of living and the development of medical sciences. For the purpose of this study, ageing is defined as the natural process of decline and increasing physical and mental vulnerability during the later stages of an individual’s lifespan. Typically, the consequence of this process is a greater need for support.^1,2 As the ageing population is expected to grow further during the 21st century, the demand to provide this care for ageing individuals will also increase.³ This situation, in combination with the cutting of government expenditure on care by all Western countries, indicates that caregiving responsibilities are increasingly likely to fall to family members.⁴ With greater responsibility comes greater emotional burden: research into formal caregiving suggests that both spouses and adult children, for instance, report not only increased strain and grief but also and perhaps paradoxically a sense of reward.^5

–8

Within the group of informal caregivers, adult children have a unique position. Caregiving for an ageing parent differs significantly from caring for a dependent partner. This is partly due to the duration and the nature of the relationship between parent and child, which has been very influential on the development of the personality of the adult child.⁹ The bond between child and parent may have been either close or distant, characterized by solidarity or conflict.¹⁰ Nevertheless, many children answer the unspoken or more overt appeal of their parents and are prepared to provide assistance.¹¹ Researchers note that intergenerational support is evident and becoming increasingly important in contemporary society.¹²

When adult children take filial responsibility, the existing roles are reversed and children find themselves caring for the person who cared for them in the past. They have to deal with an unprecedented situation: they usually have no previous experience with caring for an ageing parent and lack the right knowledge and skills. The caregiving role of children expands as the parents’ health fails or when one of the parents dies and the other becomes widowed. As a result, supporting an ageing parent can become increasingly demanding.

Research often focuses on the emotional burden experienced by the caregiver, which has been associated with psychological stress and physical health problems for caregivers and with physical and cognitive problems for care recipients.^13
–15 This feeling of burden is reported to intensify when more practical and emotional support is provided.^16,17 Adult children caring for their ageing parents face various challenges. They have to deal with competing demands in the domains of work, marriage, family and caregiving.^18

–21 Also, sharing caregiving responsibilities with siblings is often complicated. Conflicts may arise around divisions of labour, influence on the decision-making process about care and even rivalry for the parent’s affection.^22,23

However, studies also highlight positive aspects to caregiving. Children’s well-being is positively influenced when they perceive themselves to be competent and capable.^17,24,25 They also report satisfaction and personal fulfilment.²⁶ Informal caregivers in general appear to understand caregiving as worthwhile and meaningful.^27,28 The relationship between the caregiving adult child and the care-receiving parent appears to be an important determinant of the evaluation of the caregiving experience.¹⁷ During caregiving, the relationship with the parent can become closer.²⁹ However, caregiving and increasing dependency can also create distance.³⁰ A previously affectionate relationship is associated with more caregiving satisfaction and a harmonious relationship during caregiving is related to less burden.^17,25,31

The caregiving process is not influenced by emotion alone: normative factors also play an important role. Parental caregiving is not only a stressful but also a deeply normative experience.³² Nowadays, the delegation of caregiving responsibilities to citizens gives rise to the question whether relatives can be obliged to care for an ageing family member. Research shows that stronger feelings of obligation are related to a greater experience of burden.^31,33 Other studies demonstrate that the present generation of baby boomers do not want to be obliged by government or societal norms to care for their ageing parents.^34,35 However, many children still feel responsibility to care for their ageing parents in spite of weakening societal norms.^11,12,36

Although research has been done into many aspects of informal caregiving in general and filial caregiving more specifically, a well-documented overview of the (normative) aspects of the filial caregiving experience is still lacking. The reasons to conduct this review are threefold. First, more knowledge is needed to prepare adult children to be good caregivers for ageing parents and to help them sustain caregiving activities. Second, a better understanding of what children go through will enable formal caregivers like nurses and physicians for homecare and institutional care to cooperate with and support caregiving adult children. Finally, government policy in all Western countries is to reduce healthcare expenditures and to promote living at home as long as possible, resulting in increasing numbers of children with filial responsibility. In order to develop effective support, more insight is necessary into the experiences of children caring for their ageing parents. In that context, it is critical to develop a more profound understanding of the complexity of filial responsibility by gaining more insight in the experience of filial caregiving. This article addresses the following question: what are the main themes that emerge from international research about the caregiving experience of adult children caring for their ageing parents?

Method

This study is a literature review, offering a broad perspective on the subject.³⁷ This review was undertaken in three stages: an initial literature search was done; then, selected articles were screened on eligibility criteria and the quality of the articles was appraised; and finally the articles were analysed and the themes synthesized. The literature search was conducted by the first author, under the supervision of the second author. The electronic EBSCO databases Academic Search Premier, CINAHL and PsycINFO were searched. In addition, we searched with Google Scholar. The search terms were informal caregiving, support; ageing; parent, father, mother; filial, child(ren), daughter, son. Our search was limited to peer-reviewed articles, reported in English, during 2000–2017. We found 80 articles about the experiences of children taking responsibility for the needs of their ageing parents. Articles were screened using eligibility criteria that were conceptualized by all three authors, using the SPIDER tool.³⁸ The first author evaluated the quality of the studies, by appraising all articles against the checklist by Hawker et al.³⁹ Results of the evaluation were discussed by the first and second author. All 19 assessed articles scored at least 27 points out of 36, which were considered sufficient and were included in this review (see Figure 1 for a flowchart of the selection process). We found 19 articles that met the eligibility and quality criteria. Table 1 provides an overview of the articles reviewed.

Figure 1.

Flowchart selection process based on SPIDER.

Table 1.

Overview of the reviewed studies.

Author, year, country	Design	Aim	Respondents	M	F	Culture	Social Class	Parents illness	Results
Ar and Karanci, 2019, Turkey	Interviews; interpretative phenomenological analysis	To investigate Turkish adult children caregivers’ perceptions of Alzheimer’s disease and caregiving experience	20 primary caregivers	6	14	Turkish, Islamic	6 high–, 11 middle– and 3 low–social economic class	Alzheimer’s disease	Caregivers viewed family disharmony as the main cause of the disease, reported positive changes during their caregiving experience, employed religious/fatalistic coping; benefit from social support, opposed nursing home placement because they view it as morally improper and do not trust care facilities
Campbell, 2010, Canada	Interviews	To uncover commonalities and diversity in sons’ filial caregiving experience; explore what caregiving means to them; identify the ways in which understanding of caregiving was the same or different for married and never-married sons	48 caregiving sons: 38 married and 10 never-married	48	0	Canadian	Not specified	Alzheimer is mentioned in some examples; other not specified	For married sons, caregiving was more limited, for never-married sons caregiving was a more central element in their lives
Dhar, 2012, India	Interviews; phenomenological approach	To gain a thorough understanding of the experiences of members providing caregiving to their older parents in the sociocultural context	Participants have closely observed or have been providing caregiving to older parents since the last 2 years	18	8	Hindu	Middle class	Not specified	Five themes were found: respondents showed respect to emotional attachment, caregivers suffered physical and mental fatigue, taking care has financial impact, person who was more emotionally attached takes the responsibility and parents preferred to stay with their sons
Donorfio and Kellett, 2006, United States	Interviews; grounded theory	To examine filial responsibility between caregiving daughters and frail mothers, to explore filial expectations and motivations and how incongruences are met and negotiated	11 mother–daughter dyads	0	11	10 White and 1 African American	Not specified	Widowed, different frailty levels, no cognitive impairment	Four caregiving and care-receiving transitions were found: realizing I am a caregiver/care-receiver, defining the caregiver/care-receiver roles, redefining the caregiving relationship, relationship acceptance, and an overarching theme called ‘emotional responses to informal caregiving and care-receiving’. Personal, parental, family and religious levels of filial responsibility influenced the transition.
Donorfio and Sheehan, 2001, United States	Idem	To examine filial responsibility and the relationship dynamics between ageing mothers and caregiving daughters, to explore respondents’ sense of filial responsibility, filial expectations, the congruence between mothers’ and daughters’ expectations, and how incongruent expectations are negotiated	Idem	Idem	Idem	Idem	Idem	Idem	Seven themes emerged: daughter’s sense of filial responsibility, daughter’s primary allegiance/loyalty, daughter’s caregiving style, other caregiving options, equality/relational control, communication and mutuality/enjoyment of relationship
Funk, 2010, Canada	Interviews; interpretive approach	To focus on parental autonomy, independence and choice.	28 participants, self-identified as ‘caregivers’, who provided support between 8 and 50 h a month	12	16	27 Caucasian background; 1 immigrated from a Spanish-speaking country	Middle class	Not specified	Emphasis on respecting parental autonomy and individual responsibility was present. Controlling behaviour was criticized. Protecting this ideal made it difficult to talk about feeling responsible for parents. Adult children employ a framework of individualism, in order to set limits on care provision as well as cope with guilt and helplessness.
Funk, 2012, Canada	Idem	To examine whether and how adult children interpret and apply the concept of delayed reciprocity in filial relationships.	Idem	Idem	Idem	Idem	Idem	Idem	Delayed reciprocity appears to symbolise imbalance, expectedness or obligation and a lack of affection. Participants tended to reject delayed reciprocity in favour of interpretations emphasizing mutuality, family role duties and reciprocated love.
Funk, 2015, Canada	Idem	To gain a comprehensive understanding of the specific ways in which adult children interpret filial responsibility	Idem	Idem	Idem	Idem	Idem	Idem	Participants tended to have difficulty with using the construct of responsibility to describe the support they provided for ageing parents. Ambivalence was tied to associations with obligation and burden, which were difficult to reconcile with interpretations of filial relationships as loving and moral, and participants’ desires to construct themselves as autonomous. The ideal of caregiving as a voluntary choice was difficult to reconcile with reality
Habermann, Hines, and Davis, 2012, United States	Interviews: in-depth semi structured	To explore the positive aspects experienced by adult children in providing care to their parent who has either Parkinson’s or Alzheimer’s disease	34 self-identified primary caregivers with a minimum of 3 h care per day	6	28	18 White, 16 Black	Not specified	Alzheimer and Parkinson	Most caregivers had positive experiences. Three relationship-centred themes were identified: spending and enjoying time together, appreciating each other and becoming closer and giving back care
Jolicoeur and Madden, 2002, United States	Interviews together with acculturation scale	To examine the impact of acculturation on caregiving through interviews with Mexican American caregivers	22 highly acculturated (English speaking) and 16 low acculturated (Spanish speaking) caregivers	0	39	Mexican American	More or less acculturated	Elder who needed assistance	Less acculturated caregivers experienced greater stress, burden and significantly lower satisfaction even though they were more clearly fulfilling role obligations and had more family members available to assist them
Jones et al., 2008, United States	Interview together with acculturation scale; grounded theory	To examine the experience of two groups of immigrant Asian American women, who are caring for older parents; the resources the women used to provide the care and predictors of caregiver health outcomes	22 Chinese American and 19 Filipino American women	0	41	22 Asian American and 19 Filipino American	Most were educated and employed	Elder required daily assistance	Women were determined to be loyal to their traditional culture, which included strong filial values, while adapting to a new culture. Through the struggle of meeting role expectations and coping with paradox, the women mobilized personal and family resources to transform vulnerability into strength and well-being
Kanti and Falconier, 2017, United States	Interviews	To examine the experience of feeling conflicted about taking care of older parents and the impact of such caregiving on family relationships and planning	8 self-identified, second-generation Asian adults caring for older first-generation parents	2	6	Parents born and raised in China, Vietnam, Philippines, Taiwan and Korea	Annual household income between US$23,000 and US$260,000	Parents living in with children; in need of support	Participants fulfilled caregiving responsibilities out of love and not of filial piety obligation. They reported positive and negative effects of caregiving on family relationships and on financial and housing plans. Difficulties were associated with their own decreased independence and seeing parents age and the benefits of receiving parents’ instrumental support
Lopez et al., 2016, Belgium	Interviews; phenomenological research perspective	To describe how adult daughters experience caring for a frail older parent at home	11 women between 40 and 70 years	0	11	Not specified	Working full-time as an accountant, nurse, etc.; on sick-leave or retired	Frail older parents living alone or both parents living together	Four main themes were found: being a caregiver as a natural process in life, the perception and consequences of caregiving, sharing care and finding a good balance between caring for an ageing parent and other responsibilities. Visible activities were more easily shared with other family members and professionals than invisible ones. Women who experienced less support from their family tended to have had a higher level of burden.
McDonnell and Ryan, 2013, Ireland	Interviews	To explore the experiences of sons caring for a parent with dementia	Primary carers or carers actively involved with other family members in a caregiving role, between 2 and 5 years, co-habiting and non-cohabiting	13	0	Rural	10 working, 6 of them farmers; 2 had to give up working, 1 retired	Dementia	The key themes that emerged were ‘the parental bond’, ‘a binding role’, ‘coordinating care and support’ and ‘a getting on with it’ approach to care. The study highlighted the commitment of sons to their caregiving role and the strong sense of duty that motivated them
Miller et al., 2008, United States	Interviews; structurational approach	To consider the complexity of caregiving by examining the identity and identification processes of family caregivers.	11 self-identified primary caregivers; several hours a day	2	9	Not specified	Not specified	Not specified	Structures of parenting and structures of competence influence the identity of family caregivers. Analyses point to complex adaptations of structures, and to functional and dysfunctional transformations into the caregiving role.
Perry, 2004, Canada	Interviews	To explore the process of taking on and continuing to give care to mothers with dementia	18 daughters and 1 daughter-in-law living with their mothers(-in-law), and 1 daughter who had recently placed her mother	0	20	16 European and 4 Asian	13 high school graduates, 7 completed college	Early, middle and advanced stages of dementia	Mastery captured the processes of (re)calling, through (re)learning and to (re)adjusting as the daughters try to take care of themselves and consider placing their mother in a nursing home. Daughters deconstruct their images of their mother and rebuild the image to include the impact of the disease process
Sanders and McFarland, 2002, United States	Interviews	To increase knowledge about sons who assume a primary caregiver role for a parent with Alzheimer	18 sons, primary caregivers of a parent with Alzheimer’s disease	18		Caucasian, rural, social and political conservative	10 full-time employed, 4 part-time; 4 retired or unemployed	Alzheimer	Sons experience a range of emotional reactions, personal and professional conflict, as well as learn about new roles and responsibilities as they attempt to access the needed services for their parent
Snyder, 2000, United States	Interviews; combined with different scales	To investigate both the burden and satisfaction of the caregiving relationship between female primary caregivers and female care-receivers living in the same home	8 daughters and 1 daughter-in-law caring for their mother(-in-law), and 1 niece caring for her aunt; all in joint-living situations	0	10	Not specified	Employed or retired; Income: US$5.000–US$60.000	Not specified	Instead of burden and satisfaction having impact on the caregiver–receiver relationship quality, it was the quality of the relationship which distinguished low burden and high satisfaction
Ziemba and Lynch-Sauer, 2008, United States	Interviews; questionnaire; mixed methods	To focus on daughters’ emotional reactions to multiple losses	Women, whose parental care varied from one instrumental activity to all activities of daily living	0	8	Caucasian American	Well-educated and middle income	Parental care needs varied	Daughters described some degree of emotional distress, whether anger, sadness, guilt, worry, fear, annoyance or anxiety. The overarching theme was emotional reaction to loss, situated in the existential meaning of caregiving. Losses were clustered into two categories: grief reactions to the decline and loss of the parent and the daughter’s actual and anticipated loss of youth
				125	221
			Total	346

All selected articles were read and examined for content by the first author. The articles were analysed by coding and grouping them thematically. An overview of the themes and subthemes was generated. Themes and subthemes were discussed and compared for differences and similarities by the three authors.

Ethical considerations

The articles were analysed with respect to the context and the cultural differences of the reviewed articles. The results were represented with great caution and we tried to do justice to the intentions of the researchers. As appeared from our quality check, most researchers of the 19 reviewed articles did not consequently reflect on ethical issues and hardly addressed the relationship between participant and researcher. This was considered a limitation of our review.

Findings

The included studies are described in Table 1. Since caregiving practices are contextually embedded and influenced by diverse cultural and socio-political contexts, we listed information on the gender, culture and social class of the 346 caregiving children and the physical and cognitive condition of the care-receiving parent. Eleven studies describe the experiences of caregiving daughters, five consider a mixed group of sons and daughters, and three focus on caregiving sons. The studies are conducted among various cultural groups in different countries. Reasons to support the parents range from a parent’s widowhood and general frailty with some physical problems, to severe cognitive impairments such as dementia. The support provided by children ranges from a few hours per month and support with maintaining social contacts to intensive, around-the-clock care for co-residing parents with dementia. Many respondents have a middle-class background; a few studies include respondents with other backgrounds such as rural, unemployed, no income or more or less acculturated. This variety of perspectives provides a broad context to understanding fundamental issues around the practice of caregiving. The reviewed studies show that the relationship with the parent plays an important role in the caregiving experience of adult children. Within this context, caring for ageing parents appears to be an emotional rollercoaster and a normatively demanding experience, which can become an opportunity for personal development.

The relationship with the parent

Children’s caregiving experiences are embedded in their lifelong relationship with their parent. Some studies show that children derive positive feelings from the relationship during caregiving because they love their parents and enjoy their company.^40,41 Several studies suggest caregiving offers an opportunity to get closer to the parent or to restore the relationship.^42

–46 Gratitude expressed by and support from the parent is a source of satisfaction.^45

–48

During caregiving, the relationship between adult child and ageing parent can be subject to change. The reversal of roles between parent and child is difficult to accept for many children and can result in a decrease in children’s sense of well-being and the quality of the relationship with the parent. In such cases, children regret the loss of the company and support from the parent.^42,45,47,49 Negative emotions due to changes in the relationship between parent and child can potentially sour the overall experience. The analysed studies mention a range of such problems, like irritation with the parent,^{41,42,44,48,49} tensions between parent and child,^50,51 or a religious conflict with the parent.⁵² The ageing process can lead to the loss of the parent’s cognitive and physical abilities, causing children to experience strong negative emotions in turn.^42,46,49

Most research indicates that feelings of burden and satisfaction experienced during the caregiving process will influence the relationship with the parent. However, some studies suggest a shift of perspective, arguing that it is not the burden and satisfaction experienced during caregiving that affects the relationship. Instead, it is the quality of the lifelong existing relationship that defines the caregiving experience: a good relationship in the past continues to be a source of well-being and satisfaction, despite the experience of burden during caregiving.^41,52 In short, during caregiving, the relationship with the parent causes mixed emotions for the caregiving child.

Emotional rollercoaster

Caregiving provides a multitude of both positive and negative feelings, and can be rightfully described as a rollercoaster ride of emotions.⁴⁴ As one respondent states about the experience of caring for an ageing parent, ‘…they were the absolutely worst 5 years of my life, and the best 5 years of my life’.⁵³ All included studies report that caregiving is a burdensome experience, which is manifested in various ways. To be or to feel responsible is difficult.^40,54 Several caregivers struggle with health problems and are physically tired.^42,45,47 Caregiving causes financial concerns due to assuming financial responsibility for the parent and a potential loss of income in case the caregiver becomes unemployed.^46,47 In many studies, caregivers mention a lack of social contacts or isolation; they feel trapped or restricted.^{41,42,46,52,55,56} Other caregivers report experiencing a lack of control over the situation.^41,45,57

The experience of burden can be expressed through a wide range of emotions: caregivers grieve and are sad,^{42,43,49,56,57} feel anger and frustration,^{41,44,45,52,53} and report anxiety.^50,57 Some studies found that the need to help the parent with intimate care causes reluctance.^54,56,57 Adult children experience annoyance and frustration with or even resentment towards their siblings or other family members because of a lack of commitment to help with the ageing parent.^41,42,46,56

One recurring issue in the included studies is the struggle with different roles. Some caregivers experience a dualistic relationship between private and public life during caregiving.⁵³ They have to divide their time and energy between parents, spouse, (grand)children and friends and they feel like they fall short of everyone’s expectations.^{40

–43,45,54} Other caregivers regret that they have had to give up their careers.^41,57 A study of Asian American immigrant women reports that these women struggle with different role expectations, exacerbated by cultural differences.⁴⁵

Besides the burdensome side of caregiving, most articles also consider a variety of positive feelings as part of the caregiving experience. Respondents talk about joy, pleasure and happiness.^40,44,45 The ability to care well can be a source of pride and emotional fulfilment to the caregiver.^41,45,53,54 According to one study, sons found caregiving more valuable and worthwhile than employment, because it gave them a sense of meaningful purpose.⁴³ In two other studies, daughters found religious or spiritual meaning in caregiving.^42,45

All studies show that caregiving for ageing parents can be burdensome at times and satisfactory at other times. A few studies identify the simultaneous occurrence of negative and positive emotions. Feelings like anger and frustration are often mixed with love, pity and compassion.^43,45 Role reversal can be both frustrating and rewarding.⁵³ A few authors refer to caregiving as a paradoxical and ambiguous experience.^42,45,56

A normatively demanding experience

The sensations of paradox and ambiguity point towards the inherently normative nature of caregiving. Caregiving children feel responsibility for their vulnerable parents, and taking responsibility can be understood in different ways. First, as a practical notion, children actively support their parents by doing tasks such as grocery shopping, gardening or the laundry and they help with administration, transport and accompanying the parent on medical consults. In short, they support with all kinds of visible caregiving activities.^47,54 But beyond the practical dimension, the concept of responsibility also carries a normative connotation. Respondents talk about their commitment to their parents^{41,43,48,56,57}or see caregiving as something they should do.^{42

–45,48,50
–52} They refer to caregiving as a duty,^{40
–42,48,50,54} care out of a sense of obligation,^{42,44
–46,50,53,55,57,58} or mention filial piety.^42,46 For some respondents, the notions of responsibility and morality are closely connected. In one study, unmarried sons considered care for their parent to be a deep moral commitment.⁴³ In an Indian study, taking care of older parents was also seen as a moral responsibility.⁴⁷ Being a ‘good daughter’ is highly valued by Mexican American caregiving daughters.⁵⁵ One daughter explains her commitment to caring for her mother by the promise she made to her father before he died.⁵⁶ In a Turkish study, daughters view nursing home placement as a morally improper act.⁴² Hence, the feeling of responsibility is closely connected to notions of morality.

The included studies show that caregivers’ morals spring from different sources. Several studies refer to personal feelings of guilt; caregivers blame themselves for not doing enough for the parent^{43
–45,49,55} or they fear burdening other family members.^54,57 Other studies found that caregivers attach their own meaning to the caregiving responsibility.^40,48,51 Turkish caregivers felt guilty and believed that they caused their parent’s Alzheimer disease.⁴² Some authors refer to the risk of becoming paternalistic and treating the parent like a child.^51,53 Besides evaluating caregiving from a personal point of view, it can also be evaluated from a normative family perspective. Caregivers emphasize the importance of family ties, family values and familial ideals.^{40,42,44,45,50,53,55,56} Family should take responsibility for the ageing.^44,52 Some children care because of family obligations.^{42,43,45
–47,52} For several caregivers, taking care means acting in accordance with cultural norms.^45,47 The pressure to adhere to societal norms can act as a negative motivator: a few sons stated that they cared for their parents because they ‘were concerned about the perception that society would have of them if they did not take an active caregiving role for their parent’ (p. 69).⁵⁷ One study found that the caregiver’s identity is also firmly rooted in both private and public notions of caregiving.⁵³ Taking responsibility is based on a wide variety of norms, springing from personal values, family tradition and cultural ideas.

The 19 included studies show that these widely varying norms and values are not always in line with each other and thus caregivers have to deal with contradicting and conflicting values. We found several areas where values might clash in the analysed articles. Some caregivers refer to feeling a sense of obligation towards their ageing parent; however, they also state that they care because they love their parent.^42,46 Caregiving adult children particularly struggle with the concept of delayed reciprocity.^41,43,45,58 Adult children say they owe the care to their parents or feel like they need to repay their debts.^{41,43,47,48,57} Other caregivers reject the idea of ‘paying back’, as they feel this implies caring is an obligation, rather than something done affectionately. Yet other children refer to filial responsibility.⁴⁸ Most sons in another study were motivated to care because they feel emotionally indebted and rejected obligation in the sense of being morally or ethically forced to care.⁴³ Caring out of love is positively appraised, while feeling obliged to care exacerbates the negative aspects of caregiving.^56,58 One study found that caregivers contradict themselves while talking about the responsibility they felt towards their ageing parents; their contradictory ideas about love and choice suggested ambivalence.⁴⁰

Another set of conflicting values found in the included articles is autonomy versus taking over responsibility. Some adult children emphasize the autonomy and independence of their ageing parents, while at the same time feeling responsible for the needs of their parents.⁵¹ Adult children criticize dominant behaviour towards the parent but struggle with situations that require a more paternalistic approach.^51,53 In one study, daughters had difficulty with their perception of their mother’s independence and actively had to change their views and acknowledge the need for support.⁵⁶ Conflicting values in this area can also be deduced from the remarks of caregiving children who say they hope to be able to care for themselves when they become older and that they do not want to become dependent on their children. They do not expect their children to care for them.⁴⁶ Other caregivers hope to be an example for their children.

Cultural differences are also found to lead to conflicting values. Collectivistic values like intergenerational caregiving obligations, interdependence and obedience can conflict with individualistic Western values.^42,46 Several studies found that gender roles for women can differ greatly between cultures. Many women are traditionally dedicated to caring for the family, but, when they are employed in a new country, women find themselves living with paradoxes because of conflicting worldviews and role reversal.^45,55 Indian daughters would like to take responsibility for their parents, while their parents traditionally prefer their sons to care for them.⁴⁷ Different cultures produce different ideas about the role and responsibility of institutions and professional care. Children want to avoid a nursing home because of cultural expectations or because of social pressure.^{40,42,46,57,58} Many caregivers oppose nursing home placement, because they believe they know the parent best and know best what is needed.^{41,43,50,54,58} They are critical of the quality of care in an institution.^42,53,54 On the contrary, children are grateful for the support from professional caregivers and the availability of long-term care facilities.^40,41,43

Personal development

Normative challenges often give rise to opportunities for personal development, and caregiving is no exception. Caregiving children believe they can improve their practical skills and medical knowledge, as well as grow in a normative sense. For example, a sense of responsibility is further developed.^51,57 The taking of filial responsibility can be understood as a developmental stage for middle-aged children.⁵⁰ In one study, the caregiving experience was referred to as a process of recalling, learning and adjusting.⁵⁶ Some children learn new practical skills like bathing^42,44,53 while other children acquire knowledge about the progression of their parent’s disease and develop an understanding of the ageing process.^43,44,56,57 Some studies refer to the development of a caring personality, for example, children develop greater patience and become more loving, compassionate and understanding.^42
–44,57 They develop a parenting identity and learn to be protective by trying to see a situation from the parent’s point of view.^53,56 Some caregivers learn to cope with feelings of worry and with the helplessness of their parents.⁵¹ They gain better self-understanding.^44,56

Caregivers learn to deal with difficult situations. Some caregivers become stronger, for example, they become more resilient and resourceful and transform vulnerability into strength.^43,45 They learn to prioritize, to set limits on the care provision and to find a good balance between different responsibilities.^43,50,51,54 They learn to take care of themselves and stay positive.^41,43,56

Some studies found that caregivers learn from and about the relational aspects of caregiving. Caregiving daughters said they went through a transitional process of redefining the relationship with the mother, got to know the strengths and limitations of their changed mother and developed new ways of being together with the vulnerable mother.^44,56 In one study, sons said they now understood that family was their number-one priority.⁴³ One author made a special reference to the normative development of caregiving children. Children learn to balance the value of respecting their parent’s autonomy with the need to take over responsibility while caring for their ageing parents.⁵¹

Discussion

By including a wide range of qualitative studies covering the experiences of caregivers with diverse backgrounds, this review paints a comprehensive picture of the multidimensional and dynamic nature of children’s emotional and normative struggles. The relationship with the parent is found to be an important underlying determinant that both positively and negatively influences children’s caregiving experience. Within this context, three themes were found. First, this study confirms the findings of previous research that informal caregiving is burdensome and yet can be rewarding at the same time: caregiving children experience an emotional rollercoaster. Second, more than previous research, this review demonstrates that normative questions play a major role in caregiving. Furthermore, caregiving leads to opportunities for personal development.

Caregiving appears to be a normatively stressful experience. Children speak about their caregiving role in terms such as taking responsibility, being committed, doing their duty or feeling obliged. They talk about wanting to be a ‘good’ person and act in accordance with personal, familial and cultural values. Often, these different values seem irreconcilable, like supporting a parent’s autonomy versus taking over responsibility at risk of acting in a paternalistic manner, or caring for love versus feeling obliged to care, and valuing care by the family versus relying on professionals. Previous research has shown that children object to the notion of being obliged by government and social norms to care.^34,35 This review demonstrates that children also struggle on a personal level with the notion of duty and obligation. They often prefer to understand their own motivations to care as an expression of love. However, when feelings of love are missing, children still choose to care, but find it hard to acknowledge that duty is part of their motivation. As a result, their underlying conflicting beliefs adds to the normative stress they experience.

Both researchers and the caregivers themselves tend to describe normative stress in terms of ambivalence and moral dilemmas. Children talk about their responsibility in contradictory ways and appear to frame their experiences as paradoxical or ambiguous. This ambivalence, defined as contradictions that cannot be reconciled and resulting from countervailing expectations, has been researched from various theoretical perspectives. For example, psychologists stress that intergenerational relationships are usually full of emotional contradictions like solidarity and conflict, nearness and distance.^10,59 The transition to old age and poor parental health was associated with greater ambivalence.^29,60 As a result, intergenerational ambivalences appear to intensify during filial caregiving: children are literally caught between conflicting personal values.

The prefixes ‘ambi’ and ‘di’ imply a pair, and seem to hint that one has to choose between two options, of which one is best, such as caring for parents versus caring for other dependent family members, or living up to Western individualistic versus Eastern collectivistic norms. But looking carefully at the caregivers’ reported normative stress, this seems to be an overly simplistic representation of affairs. In spite of caregivers framing their normative stress in ambivalent terms, it can be questioned whether this understanding of their normative struggles actually helps children deal with the challenges of caregiving. In search for a more in-depth understanding, we focus on one of the most striking features of caring for an ageing parent: the confrontation with vulnerability.

All children in the reviewed articles take responsibility to care for their ageing parent, they have to face parents’ vulnerability and suffering. Over time, children will experience many disappointments during caregiving. They intend to promote parents well-being and be good caregivers, but this review demonstrates that these intentions can also cause children to become frustrated during caregiving. At times, they even fail as caregivers, resulting from a lack of (professional) experience as caregivers or due to time constraints and other responsibilities. Ageing is an irreversible process: the parent’s condition often declines over time, with little prospect of improvement. During caregiving, inevitably children experience shortcomings as caregivers and feelings of failure are related to normative stress. These feelings of failure suggest that the concept of ambivalence – as defined in terms of conflicting values held by the caregiving child – alone does not fully explain the normative stress the children experience. The notions of ambivalence, paradox, duty and obligation are part of a more complex system of normative reasoning, bringing to mind Held’s suggestion⁶¹ that care is surrounded by a constellation of many moral considerations. At the centre of this galaxy, we find relationships often at the core of the struggle children caring for their ageing experience.⁶² There is the relationship with the parent, which can be both a positive and a negative influence on the caregiving experience and which is best understood by acknowledging the complex feelings towards reciprocity, vulnerability and openness in this type of relationship.⁶³ But other relational tensions, like conflicts between siblings, responsibilities for other family members and social and work-related duties, can have an equally big impact and show that the caring of children for their ageing parents is embedded in many layers of relationality. A more complex and multi-layered view of care as embedded in the fabric of social interrelatedness will improve the understanding of the normative tensions that caregivers of ageing parents experience.⁶⁴ We suggest that a deeper understanding of children’s normative stress is provided by words like reflecting, questioning and searching. Caregiving is a quest, because the search for the best possible care in the face of continuous decline is an ongoing process. Caregivers do not walk a straight ethical road, a term coined by Carol Gilligan.⁶⁵ They respond to the demands of the quest by searching for moral answers in different directions. It requires ongoing recalibration, relying on one’s personal moral compass and the values of the parent.

This review demonstrates that caregiving can be a catalyst for personal development. Children get closer to the vulnerable parent and have the chance to repair relational problems from the past or heal childhood struggles. They develop new ways to be with the changing parent, become more sensitive and learn to cope with burden. Caregiving for ageing parents is a unique, often once in a lifetime experience and offers adult children in their fifties and sixties several opportunities for personal development. According to Erikson,⁶⁶ these possibilities should be seized to develop towards integrity and wisdom and becoming fully human. Taking responsibility for the well-being of ageing and vulnerable parents raises the question of how to engage responsively and with care and how to deal with conflicting responsibilities. These questions are moral questions that challenge moral development.⁶⁵ Relational proximity and human interconnectedness and care are strongly related to moral responsiveness and moral development.⁶⁷ Although some researchers refer briefly to the moral development of caregiving children, caregiving as an opportunity for personal, ethical and moral development is underexposed in the reviewed articles.

This research has implications for healthcare professionals caring for ageing people, like nurses, physicians and geriatrics, while working together with caregiving children. Our findings suggest that such professionals could improve the level of support they offer to caregiving children, by also paying attention to the normative complexity of the conflicting values that accompany caregiving, in addition to offering practical and medical support. Also health professionals like general practitioners and organizations that deal with the interests of informal caregivers should not just focus on practical problems and services like respite care, but show an interest in the normative demandingness that children experience while supporting a vulnerable parent. When healthcare professionals are equipped to address children’s normative questions and concerns, they can play a pivotal role in assisting children to be good caregivers and to cope with the moral quest that caregiving for ageing parents appears to be.

Future research is recommended to gain a thorough understanding of the sources of normative stress and the nature of the moral quest that accompanies caregiving for ageing parents. Such research would ideally focus on the aspects that facilitate or hinder caregiving children’s moral development. Future research should contribute to the development of better tools, to support caregiving children, in order to relieve their sense of burden and prevent burnout. Potentially, future research could suggest the development of policies that enable children to make the most of the opportunities for personal growth and to develop their caregiving qualities, aiming at a better overall quality of long-term care for both parent and child. We encourage future researchers to include moral struggles of filial caregivers by studying the voice of caregiving children and their stories within the contemporary discourse on informal caregiving.

Limitations

Our study was limited in a number of ways. Almost all reviewed articles scored low on the ethical issue of the quality appraisal tool, which we consider a limitation of our study. This review was restricted to articles published in the English language during the period 2000–2017. As experiences of caregiving children cannot be studied apart from their day-to-day personal and social context, we opt for a relative recent period. Relevant studies in other languages were missed. However, we consider the included studies to be representative of our area of research. Respondents represented different cultural backgrounds and mother tongues in a substantial time span. Of these 19 studies, 2 studies by Donorfio and colleagues^44,50 and 3 studies by Funk^40,48,51 are drawn from similar samples and settings. As a result, the 19 studies had only 16 data sets. However, the total number of respondents was still considerable. Search criteria led to a heterogeneous sample of studies and contextual elements varied widely between articles. Because of the limited number of articles and the diverse approach of the investigations, our review is insufficient to explore meaningful issues such as gender, social class, differences in need of support for the parent and the wide variety of filial responsibilities. In everyday caregiving practice, these issues are far from trivial. As a result, the scope of our analyses was widened, which helped us to gain understanding on a more general level. We decided to conduct a review of exclusively qualitative studies, to reflect our interest in the experience of caregiving; this choice might be considered a limitation. However, our approach offered an in-depth understanding of the normative struggles of caregiving children that have not been addressed before.

Conclusion

A thorough analysis of 19 empirical studies about the experiences of 346 children caring for their ageing parents shows that this type of caregiving is accompanied by many contradictory emotions. Many children find caregiving burdensome, though at times satisfactory as well. The relationship with the parent influences the caregiving experience in both the positive and the negative sense. This review shows that these emotions are related to many normative questions and moral considerations. Personal, familial and cultural values often conflict and are difficult to reconcile.

Filial caregivers have the intention to provide good care, they want to do good. However, their intentions can be frustrating in different ways. The condition of the ageing parent declines and in spite of their efforts, the parent’s well-being does not improve. Caregivers find it impossible to honour all responsibilities to other dependents, family and work. Filial responsibility in the context of many other responsibilities can be too much to bear, without an unambiguous and definite solution. At times, they fail as caregivers and have to accept disappointments. Caregivers struggle with normative questions without finding straightforward answers, they don’t walk a straight ethical road. Caregiving turns out to be a complex and unending quest for the good. This quest requires an ongoing reflection on and recalibration of one’s personal moral compass. Although many aspects of normative stress are mentioned in the 19 reviewed articles, a thorough theoretical and empirical understanding of filial caregivers’ moral quest is lacking. Because of demographic developments, more and more children, for a longer period of time, will be confronted with the need for support and care of their ageing and vulnerable parents. Professionals who support and collaborate with filial caregivers should be prepared to address not only the practical responsibilities but also the normative questions and moral considerations.

Footnotes

Authors’ contributions

The first and second author were responsible for the research design. The first author conducted the review and the literature search under the supervision of the second author. The quality of the studies were evaluated by the first and the results of the evaluation were discussed by the first and second author. The first author read and examined all selected articles for content and themes, and subthemes were discussed and compared for differences and similarities by the three authors. The first author was responsible for the drafting of the manuscript while the second and third author commented on the various drafts, finally leading to this article.

Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

ORCID iD

Ina Luichies

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