Adult Children and the Transition of Aging Parents

Abstract

This study explores the experiences of adult children as they transition their functionally and/or cognitively declining aging parents from independent living to supervised housing. A qualitative grounded theory approach was used to chronicle the experiences of adult children as their caregiving responsibilities intensified and their parents' health declined. Purposive, snowball sampling was used to enlist adult children (n = 16) who were in the process of transitioning an aging parent from an independent living situation to one providing assistance with everyday care and tasks. Semi-structured telephone interviews were conducted and designed to follow a pattern of increased frailty of the parent(s) and escalating involvement of the adult child. Two major themes emerged from the data: Changing places and everlasting love. Adult children began to intervene when cognitive or physical declines compromised the safety and well-being of the older adult and began to assume responsibility for day-to-day needs. As disabilities intensified, adult children relied on siblings, friends, social services, and health care providers to assist in planning and implementing caregiving responsibilities. Deep respect and abiding love of the aging parent(s) sustained the adult child throughout the caregiving experience.     

Great expectations: a position description for parents as caregivers: Part I

Parents caring for a child with a chronic condition must attend to a myriad of day-to-day management responsibilities and activities. This two-part series examines parental roles and responsibilities in detail. Part I will review both the adult and pediatric family caregiving literature. It will also describe four major caregiving responsibilities with associated tasks in both direct and indirect illness-related care, which parents are expected to perform when caring for a child with a chronic condition. These are: (a) managing the illness; (b) identifying, accessing, and coordinating resources; (c) maintaining the family unit; and (d) maintaining self. Part II (to be published in the next issue of Pediatric Nursing) will present a multifaceted list of parent caregiving management responsibilities and associated activities drawn from the literature. Clinical nursing implications associated with caregiver responsibilities and tasks will also be addressed.     

Important aspects of care and assistance for parents of children, 0-18 years of age, on or off treatment for cancer. Parent and nurse perceptions.

Important aspects of care and assistance for parents of children (0-18 years) diagnosed with cancer were investigated. Parents (N=114) and nurses (N=121) were asked the following questions: 'What caring aspects are important for you/the parent to feel cared for?' and 'What help, if any, do you/the parent need outside the hospital?' Nurses were asked to answer for a certain parent. Data were analyzed by content analysis. The following aspects of care were identified: accessible care, clinical competence, continuity, emotional support, information, participation in care, participation in decision making, physical ambience, shift in parenting roles, social competence, temporary assistance, own child is well cared for, and time. Most parents mentioned the importance of social competence and information, most nurses mentioned the importance of information and emotional support. The following aspects of assistance were identified: accessible care, emotional support, financial support, instrumental support, and support to live a normal family/social life. A third of the parents and a fourth of the nurses were of the opinion that the parent did not need any assistance. Most parents who mentioned a need of assistance mentioned a need for emotional and instrumental support. Most nurses mentioned a parental need for emotional support and accessible care.     

Important aspects of care and assistance for children 0–7 years of age being treated for cancer

Aspects of care and assistance that are important for children aged 0-7 years who are being treated for cancer were examined. Parents ( N=57) and nurses ( N=59) were asked: "What caring aspects are important in ensuring that your child/the child feels cared for?" and "What help, if any, does your child/the child need outside the hospital?". Data were analysed by content analysis. The following aspects of care were identified: amusement, clinical competence, continuity, emotional support, family participation, honest communication, information, participation in decision making, satisfaction of basic needs, social competence, the parents are well cared for, and time. Parents most frequently mentioned social competence and amusement, while nurses most frequently mentioned continuity and information. The following aspects of assistance were identified: accessible care, amusement, emotional support, family life, meeting friends, normal life, practical support, rehabilitation and school support. At least a third of the children did not need any assistance, according to parents and nurses. Parents most frequently mentioned family life, meeting friends and practical support. Nurses most frequently mentioned normal life and family life. Taken together, the results indicate that not only a family but many more people need to be involved to help children with cancer to be cured not only in a biological but also a psychosocial sense.     

Parents as caregivers for children with schizophrenia: moral dilemmas and moral agency

Because the ability of people with schizophrenia to achieve anticipated success and independence is compromised, many of their parents assume responsibility for protecting, nurturing, and directing care for their offspring. The emotional, social, and financial challenges of caregiving, extended beyond the usual child-rearing duration, are complicated by the societal designation of their children as adults. Decisions about caregiving involve many practical and moral dilemmas. In this article, we examine several dilemmas encountered by parents who try to fulfill their perceived responsibility to care for adult children with schizophrenia. After exploring the related concept of moral agency, we close with some reflections on the assumptions surrounding psychiatric care and parental responsibility.     

The relationship between caregiving and employment. A study of stress in employed and unemployed caregivers of elderly persons

The need for persons to provide care on an informal basis to frail and dependent elderly persons has generated a "caregiving crisis" in this country. Middle age women, the traditional caregivers for most generations, are no longer readily available to provide informal care. Instead, they are likely to be struggling to cope with the dual demands of paid employment and family responsibilities. Significant differences exist between employed and unemployed caregivers in relation to age, marital status, gender, personal health status, and caregiver-care recipient relationships. However, no differences exist in relation to the amount of stress experienced as a consequence of caregiving responsibilities. Occupational health nurses have an ideal opportunity to help employed caregivers cope with their caregiving responsibilities both at the worksite and in their personal lives.     

Important aspects of care and assistance for children with cancer

This study examined aspects of care and assistance that are important for 8- to 12-year-old children with cancer. Data were gathered through interviews with 25 children, 31 parents, and 32 nurses. Each participant was asked: “What caring aspects are important for you/your child/the child to feel cared for?” and “What help, if any, do you/your child/the child need outside the hospital?” Data were analyzed by content analysis. The following important caring aspects were identified: amusement, clinical competence, continuity, family participation, honest communication, information, participation in decision making, satisfaction of basic needs, social competence, and time. Children most frequently mentioned the importance of social competence, amusement, and satisfaction of basic needs. Parents and nurses most frequently mentioned the importance of information, social competence, and participation in decision making. The following important assistance aspects were also identified: emotional support, family life, meeting friends, practical support, rehabilitation, and school support. Two-thirds of the children did not mention that they needed any help outside the hospital. According to parents and nurses, one third of the children needed emotional support, whereas none of the children mentioned a need for this.     

Determinants of parental decisions on ''drop out'' from cancer treatment for childhood cancer patients

Little is known about the psychosocial process of parental decisions on 'drop out' from cancer treatment for paediatric patients in Taiwan. This study, based on structured in-depth interviews, attempted to document the determinants of parental decisions on drop out. A total of 19 parents of paediatric cancer patients who dropped out from a cancer treatment for at least a month within 3 years since first treatment were interviewed. Content analysis of qualitative data revealed six categories of determinants associated with parental decisions: suffering severe pain from medical treatments and adverse side-effects; desire for better and less painful treatments; adverse effect of other patients' experiences; searching for possible explanations for disease after prolonged denial of diagnosis; lack of empathy from health care professionals; and misinterpretation of improved prognostics. These findings reflected the deficiency of psychological and emotional support for parents from health care professionals prior to and during cancer treatment.     

Caregiving stress, immune function, and health: implications for research with parents of medically fragile children

Caregiving stress has been associated with considerable demands imposed on parents responsible for the physical and emotional care of medically fragile children. With health care advances in medicine and technology, there are a growing number of children with chronic conditions and disabilities (i.e., the medically fragile) surviving longer and being cared for almost exclusively in the home by parents. The physical strains, financial constraints, emotional effects, and social isolation experienced by parents caring for children with such complex medical needs may ultimately impact their physical and emotional health. Stress associated with the caregiving of older adults has been shown to negatively impact on health and immune functioning with the potential for associated morbidity. Studies exploring the relationship of stress with biological markers of immune functioning in parents have not been widely conducted. Therefore, there is a great opportunity in parent-child health for researchers to investigate implications of stress on immune functioning and health outcomes in parents caring for medically fragile children at home. The purpose of this review article will be to provide an overview of the literature related to caregiving stress and immune functioning and to discuss implications for research in this area with parents of medically fragile children.     

Parents of Adults with Intellectual Disabilities: Quality of Life and Experiences of Caring

This study examined a UK sample of parents caring for their adult offspring with intellectual disabilities, and the factors contributing to their quality of life and experiences of caregiving. Structured interviews were conducted with 62 parents of adults with intellectual disabilities. On several indices of quality of life, parents did not seem to be functioning as well as caregiving parents in the US, or as well as adults in the general US population.The offspring's level of challenging behaviour and physical dependency and the parent's satisfaction with informal support were associated with parental quality of life. The salience that parents placed on their post‐parental life style was also associated with quality of life, with ‘captive’ parents faring more poorly than ‘captivated’ parents.     

Responses of elderly spouse caregivers

In this paper three categories of variables were identified to predict spouses' reactions to caregiving roles: patient characteristics, the caregiving environment, and characteristics of the caregiver. Measures of these variables were administered to 159 spouse caregivers. Four domains of caregivers' responses were identified: negative emotional reactions, feelings of responsibility for the patient, feelings of abandonment by family, and impact of caregiving on daily schedules. These domains were influenced most by patient negative behaviors, physical health, and age, and by caregiver age, employment, and emotional status. Amount of assistance, affective support, and hours of care also were predictive of spouse responses.     

The resources of parents with a child in psychiatric inpatient care

The purpose of this study was to analyse and describe the resources of parents with a child in psychiatric inpatient care. The factors associated with parental coping were also assessed. The data were collected from 19 hospitals with a child psychiatry unit. At the time of data collection, all the parents of the children in psychiatric inpatient care in these hospitals were invited to participate in the study (N = 268). The method of data collection was a questionnaire including open-ended questions. The response percentage was 30% (N = 79). The data were analysed using SPSS software. The replies to the open-ended questions were analysed utilizing data-based content analysis. The findings indicated that the parents received more emotional than instrumental support. Few got financial support. The parents got support from their spouses, families, friends and fellow-workers and the health care personnel. Nearly half of the parents wanted more support from health care personnel. Of the different kinds of social support reported, emotional support, support in the care and rearing of the child in inpatient care, love and acceptance correlated most strongly with parental coping.     

Family caregivers of adults with acquired physical disability: Thai case–control study

This case–control study compares the health of Thai family caregivers of adults with acquired physical disabilities with others without similar responsibilities. To ascertain health perceptions, face‐to‐face structured interviews using the Short Form (36) were conducted with participants randomly selected from primary care units in eastern Thailand (150 in each group). Despite similar sociodemographic profiles, caregivers reported more health problems and harmful health behaviours. Mean scores for physical and mental health were significantly lower. Factors contributing to poorer health among both caregivers and controls were older age, low educational level, insufficient income and existing health problems. Additional factors for caregivers were gender, spousal or in‐law relationship, high dependency, long caregiving time, lack of previous experience and other caregiving responsibilities. This study identifies an urgent need for support to promote caregivers' health to enable them to maintain their vital role.     

Parent or nurse? The experience of being the parent of a technology‐dependent child

AIMS: This paper reports a study exploring parents' experiences of caring for a child who is dependent on medical technology, and in particular of performing clinical procedures on their own children. BACKGROUND: A group of children with a continuing need for the support of medical technology have emerged in community settings as a result of medical advances and government policies. Caring for these children has a significant social and emotional impact on parents, because of their specialized and intensive care needs. Obtaining appropriate and coordinated home support services is problematic. METHODS: Grounded theory techniques were used, and in-depth interviews were conducted with the parents of 24 children. FINDINGS: Parents' accounts revealed that their constructions of parenting were shaped by the nature of their role in caring for their child and by the transformation of their homes by medical equipment and personnel. They described themselves as having a role that had both parenting and nursing dimensions. Parents managed this tension and defined their role and relationship to their child to be primarily one of parenting by differentiating parental care-giving and its underpinning knowledge from that of professionals, particularly nurses. CONCLUSIONS: Parenting a technology-dependent child alters the meaning of parenting. Professionals need to recognize that providing care has a substantial emotional dimension for parents, and that they need opportunities to discuss their feelings about caregiving and what it means for their parenting identity and their relationship with their child. A key professional nursing role will be giving emotional support and supporting parents' coping strategies. Parents' perceptions of nurses raise questions about whether nurses' caregiving is individualized to the needs of the child and family, and whether parental expertise is recognized.     

Parent perceptions of the psychological functioning of their children diagnosed with pediatric motility disorders and that of family members.

The aim of our study was to characterize the parental perceptions of the behavioral and emotional functioning of their children and families coping with gastrointestinal motility disorders. The American Pseudo-obstruction and Hirschsprung's disease Society sponsored an educational meeting for parents of children afflicted with a variety of pediatric gastrointestinal motility disorders. During the conference, parents completed a questionnaire pertaining to the behavioral and emotional functioning of the afflicted child and other family members. Parents perceived that the child's illness was more difficult on the parents than on the affected child or their siblings. Also, parents perceived support from professionals, family, and friends increased after the children were diagnosed with pediatric gastrointestinal motility disorders. Parents worried most about the health and medical management of their afflicted child. The most common behavioral problem of the afflicted children was fear of separation, whereas the most common behavioral problem of their siblings was jealousy. The majority of referrals to mental health professionals resulted from parental emotional problems or marital discord.