During home isolation due to the coronavirus disease, family caregivers assumed the responsibility of caring for infected family members; however, the full extent of the difficulties and challenges ...they encountered remains unclear. This study applied a descriptive phenomenology approach, using semi‐structured, one‐on‐one, in‐depth interviews to explore the experiences of 16 primary family caregivers during home isolation amid the coronavirus disease. The key themes identified were as follows: (1) protecting family, comprising anxiety over preventing infection and bearing the responsibility of caregiving and a concern about the diagnosis; (2) seeking stability, encompassing the impact of epidemic control policies on daily routines, strategies to overcome obstacles caused by quarantine measures, and gathering resources and receiving support; and (3) reflections on life, including favoring love over discrimination, rediscovering oneself, cherishing family, and acknowledging personal growth and dedication. This study highlights that family members who took on caregiving roles due to obstacles or health risks faced significant pressure to protect their family members during isolation and actively sought professional consultation and acquired caregiving skills to enhance their confidence and adaptability.
Abstract
Background
The exclusive breastfeeding rate in China remains significantly low. Numerous studies have identified the impact of maternal characteristics on exclusive breastfeeding; however, ...the correlation between primary family caregivers’ characteristics, such as health and nutrition knowledge, and exclusive breastfeeding still lacks clarity. The aim of this study is to investigate the association between the health and nutrition knowledge of primary family caregivers and exclusive breastfeeding in rural China.
Methods
In 2019, a cross-sectional study was conducted in two prefectures within the Qinba Mountains area, located in the southern region of Shaanxi province. Data on knowledge of health and nutrition, breastfeeding practices, breastfeeding family support, breastfeeding self-efficacy, and conflict frequency were collected via structured questionnaires from 372 caregiver-infant pairs. Infant feeding practices were assessed based on the caregivers’ recall of the previous day (within the 24 h before the interview). The mother was interviewed first, followed by a brief questionnaire for the primary family caregiver, both conducted individually to minimize disruptions from other family members. Univariate and multivariate regression analyses were conducted to explore the correlation between knowledge of mothers and primary family caregivers and exclusive breastfeeding.
Results
The exclusive breastfeeding rate for six-month-old infants in the sample was 15.7%. On average, mothers scored 4.6 (SD 1.4) for health and nutrition knowledge, while primary family caregivers scored 3.6 (SD 1.4). Both maternal (OR 1.48; 95% CI 1.16, 1.88) and primary family caregiver’s (OR 1.34; 95% CI 1.05, 1.70) health and nutrition knowledge were significantly associated with exclusive breastfeeding. A positive correlation (OR 1.98; 95% CI 1.40, 2.80) existed between the average health and nutrition knowledge of the mother and primary family caregiver and exclusive breastfeeding. The primary family caregiver’s health and nutrition knowledge was positively correlated with the practical family support perceived by the mother (OR 1.23; 95% CI 1.02, 1.49) and breastfeeding self-efficacy of the mother (β = 1.40; 95% CI 0.29, 2.50).
Conclusions
The characteristics of the primary family caregiver play a large role in exclusive breastfeeding. To promote exclusive breastfeeding, interventions should address the needs of the whole family instead of just mothers.
Background:
An increasing number of patients with terminal illnesses prefer to die in their own homes due to aging, high medical payments, a limited number of hospitalization days, and the ability to ...receive care from family members. However, few studies have been conducted on the subjective perception and value of caregivers for home-based palliative care (HBPC).
Objective:
To identify common themes and topics of primary family caregivers’ lived experiences with HBPC when taking care of terminally ill family members.
Methods:
We conducted audio-recorded transcripts of one-on-one in-depth interviews of primary family caregivers of HBPC. Through a purposive sampling method, the participants were all interviewed; these interviews were transcribed verbatim and analyzed using a grounded theory approach.
Results:
A total of 22 primary family caregivers participated in the study. “Wholeheartedly accompanying one’s family to the end of life at home” was the core category. Six main themes describing caregivers’ experiences emerged from the interviews: (1) learning the basic skills of end-of-life home care, (2) arranging the sharing and rotation of care, (3) preparing for upcoming deaths and funerals, (4) negotiating the cultural and ethical issues of end-of-life home care, (5) ensuring a comfortable life with basic life support, and (6) maintaining care characterized by concern, perseverance, and patience.
Conclusions:
Primary family caregivers of HBPC need support and must learn home care skills by means of the holistic approach. It is crucial to establish assessment tools for caregivers’ preparedness for HBPC, including biopsychosocial and cultural considerations.
Background: The lack of adequate medical care, healthcare, and older adult care in remote, low-income, rural Kazakh areas of China is a particular concern that should be prioritized for improvement. ...Purpose: This study was designed to explore the relationship between the variables of disability severity, social support, and caregiver competence and the quality of home-based care in a population of Kazakh older adults with disabilities and to analyze the path between severity of disability and quality of home-based care in this population. Methods: A cross-sectional survey was conducted on 335 Kazakh older adults with disabilities living in Xinjiang, China, and their primary informal caregivers. Disability severity was assessed using the Activities of Daily Living Scale, caregiver competence was assessed using the Family Caregiver Task Inventory, social support was assessed using the Social Support Rating Scale, and home-based care quality was assessed using the Family Caregiving Consequences Inventory Scale. Path analysis was used to check the effects of other variables on the quality of home-based care. Results: Significant correlations were found among disability severity, caregiver competence, social support, and home-based care quality. Disability severity was shown to have a 29.28% direct effect on home-based care quality and a 70.72%indirect effect through social support and caregiver competence. Conclusions: The results of this study confirm that better social support and caregiver competence improves the quality of home based care available to older adults with disabilities. Policymakers should give priority to improving the quality of care provided to community-dwelling older adults with severe disabilities. Furthermore, health management departments should provide informal caregiver training that teaches care and rehabilitation knowledge and skills to improve the competencies of caregivers.
To explore the associations between stress, sleep disturbances, fatigue severity and social support among primary family caregivers in intensive care units during the early period of ICU ...hospitalisation.
Cross-sectional, descriptive correlational study.
Intensive Care Units in a teaching hospital in Taiwan.
Perceived stress (Impact of Events Scale-Revised), sleep disturbances (General Sleep Disturbance Scale), fatigue severity (Lee’s Fatigue Scale), social support (Norbeck Social Support Questionnaire) and one open-ended question.
The primary family caregivers (N = 87) were distressed and experienced poor sleep quality and fatigue during the early period of ICU hospitalisation. Primary family caregivers have various social support needs but being updated on the patients’ prognosis was at the top of the list. Perceived ICU hospitalisation stress was the only significant predictor for fatigue while age along with perceived event stress were the significant predictors for sleep disturbances.
Stress-coping interventions are needed to reduce stress-related symptoms for the primary family caregivers. Social supports did not buffer stress in this study, which calls for further research to explore the culture variance and quality of social support.
This study explored the consistency between preferences for end-of-life care for elderly hospitalized patients and their primary caregivers and predictors of consistency.
This cross-sectional ...correlational study recruited 100 dyads of elderly hospitalized patients and their primary caregivers from a medical center in Central Taiwan. A structural questionnaire about preferences for seven end-of-life medical treatment options involved cardiopulmonary resuscitation, intravenous therapy, nasogastric tube feeding, intensive care unit, blood transfusion, tracheotomy, and hemodialysis.
The consistency was 42.28% for preferences of end-of-life medical care between patients and caregivers. The Kappa values for seven life-sustaining medical treatments ranged from 0.001 to 0.155. Logistic regression showed that the predictors of consistency for preferences of treatment were: a patient with a signed living will (odds ratio OR = 6.20, p<0.01) and a male family caregiver (OR= 0.23, p<0.01) for cardiopulmonary resuscitation; a patient who visited relatives in the intensive care unit (OR= 2.94, p< 0.05) and a spouse caregiver (OR= 3.07, p< 0.05) for nasogastric tube feeding; a spouse caregiver (OR=3.12, p<0.05) and a caregiver who visited the intensive care unit (OR= 5.50, p<0.01) for tracheotomy; and a spouse caregiver (OR= 2.76, p<0.05) and a caregiver who visited the intensive care unit (OR= 4.42, p<0.05) for hemodialysis.
End-of-life medical treatment preferences were inconsistent between patients and family caregivers, which might be influenced by Asian culture, the nature of the relationship and individual experiences. Implementation of advance care planning that respects the patient's autonomy and preferences about end-of-life care is recommended.
Purpose
This study aimed to examine the quality of family‐centered care perceived by primary family caregivers and its influencing factors in mental healthcare practice.
Design
A cross‐sectional, ...correlational study.
Methods
A convenience sample of 121 mental health nurses and 164 primary family caregivers of patients with schizophrenia was recruited from acute psychiatric wards and chronic psychiatric rehabilitation wards in three psychiatric hospitals in Taiwan. Structured questionnaires for mental health nurses were designed to examine nurses’ attitudes toward schizophrenia and the importance of families in nursing care. Primary family caregivers were assessed to determine their perceptions of quality of family‐centered care. At least one primary family caregiver of patients was matched to a nurse who took major responsibility for the patient during the hospitalization. Data were analyzed with descriptive statistics, Pearson’s product‐moment correlations, independent t‐test, one‐way analysis of variance, and stepwise regression analyses.
Results
Quality of family‐centered care perceived by primary family caregivers regarding the provision of general and specific information, as compared to enabling and partnership, coordinated and comprehensive care, and respectful and supportive care, was relatively inadequate. Younger and more educated primary family caregivers, having relatives with schizophrenia in acute wards, less supportive nurses’ attitudes toward schizophrenia, and the importance of family in nursing care were correlated with poor primary family caregivers’ perceptions of quality of family‐centered care. Nurses’ supportive attitudes toward schizophrenia and chronic psychiatric rehabilitation wards where patients received care were key factors in determining better quality of family‐centered care.
Conclusions
Findings provide a platform for the development of effective continuing education and training programs to equip mental health nurses with supportive attitudes toward mental illness and an integration of the family in nursing care, which will ultimately improve mental health care for families experiencing mental health problems.
Clinical Relevance
Efforts in professional training to address stigma and encourage a family‐centered approach into recovery‐oriented practice for practicing mental healthcare providers, including mental health nurses, are recommended.
Aim
To explore primary family caregivers' observations and perceptions of their older relatives' knee osteoarthritis pain and pain management.
Background
Osteoarthritis is one of the most common ...joint disorders in older people. Studies have mainly focused on spouses' or partners' perceptions of older individuals' osteoarthritis pain.
Design
Qualitative description.
Methods
Primary family caregivers of older outpatients with osteoarthritis (N = 28) were recruited by convenience from one medical centre in northern Taiwan and two regional hospitals in northern and eastern Taiwan in 2012. Data were collected in individual interviews using a semi‐structured guide and analysed by content analysis.
Results
Primary family caregivers observed that their older relatives commonly mentioned that osteoarthritis pain interfered with their walking ability, daily activities, moods, sleep and social activities. Older adults commonly shared their pain with their family members. Participants observed that their older relatives with osteoarthritis used limited pain‐management strategies to relieve pain, but participants provided few pain‐management strategies to help their relatives. Most participants had limited knowledge about osteoarthritis pain. Some participants and their older relatives held negative attitudes towards using pain medicines. Most participants suggested that other families should bring their older relatives with osteoarthritis pain to see a doctor as soon as possible.
Conclusion
Our results show that family caregivers were the main support for older people with osteoarthritis. Interventions should educate patients and family members about osteoarthritis causes, common misconceptions about osteoarthritis, osteoarthritis pain medicines and treatment and encourage family members' support.
(a) To assess the extent to which there are ambivalent dyadic relationships between older care recipients and their primary family caregivers (PFCs) and migrant care workers (MCWs) and (b) to examine ...the extent to which ambivalence explains loneliness among the care recipients.
A sample of 279 triads of respondents (care recipients, their PFCs, and their MCWs) was used and interviewed face-to-face. The Dyadic Relationship Scale was used to assess quality of relationships and ambivalence. The de Jong Gierveld Loneliness Scale was used to assess loneliness.
Mean scores for dyadic ambivalence between the care recipients and both types of caregivers were moderate. Lower levels of ambivalence in dyadic relationships with PFCs were associated with decreased loneliness. Ambivalent dyadic relationships explained 6% of the variance in loneliness.
Some degree of ambivalent relationship exists between care recipients and both types of caregivers. The vigor of ambivalence was significantly associated with the level of loneliness reported by functionally disabled older adults.
Aims and objectives
To examine influencing factors of health‐related quality of life in primary family caregivers of people with schizophrenia receiving inpatient psychiatric rehabilitation services.
...Background
Families, particularly primary family caregivers, have become more important than ever in mental health care. Yet, research on health‐related quality of life among primarily family caregivers is limited.
Design
A correlational study design was used.
Methods
A convenience sample of 122 primary family caregivers participated in the study. Data were analysed with descriptive statistics, Pearson's product–moment correlation, t test, one‐way analysis of variance and a hierarchical multiple regression analysis.
Results
Primary family caregivers who were parents, older, less educated, and had a lower monthly household income, increased affiliate stigma and decreased quality of family‐centred care experienced poor health‐related quality of life. Particularly, monthly household income, affiliate stigma and quality of family‐centred care appeared to be the most critical determinants of health‐related quality of life.
Conclusions
Efforts to enhance satisfaction of life should focus on reducing affiliate stigma as well as increasing monthly household income and strengthening the quality of family‐centred care.
Relevance to clinical practice
Findings may assist in the development of culturally integrated rehabilitation programmes to decrease affiliate stigma and increase family engagement as a means of promoting quality of life for primary family caregivers living with people who have schizophrenia.
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