Technology-dependent children with respiratory problems on a home care program: Exploring the family experience

Author(s):  
Maria Galogavrou ◽  
Elpis Hatziagorou ◽  
Petrina Vantsi ◽  
Ilketra Toulia ◽  
Elisavet-Anna Chrysochoou ◽  
...  
2021 ◽  
pp. 1-7
Author(s):  
Megan Weber Falk ◽  
Rakel Eklund ◽  
Ulrika Kreicbergs ◽  
Anette Alvariza ◽  
Malin Lövgren

Abstract Objective The entire family is affected when a parent is severely ill. Parents often need and appreciate professional support when talking to children about illness and death. The family talk intervention (FTI) is family-centered and intends to promote communication about the illness and its consequences, support parenting to enhance family coping and help family members share experiences with each other to create a shared family history. This study aimed to explore potential effects of FTI in specialized palliative home care, as reported by parents. Method This pre-post test intervention pilot was conducted in specialized palliative home care. A convergent mixed-method design was used to analyze interview and questionnaire data. Twenty families with dependent children were recruited from two specialized palliative home care units in Stockholm, Sweden. Results Parents reported that family communication improved after participation in FTI as family members learned communication strategies that facilitated open sharing of thoughts and feelings. Increased open communication helped family members gain a better understanding of each other's perspectives. Parents reported that relationships with their partner and children had improved as they now shared several strategies for maintaining family relationships. Parents were also less worried following participation in FTI. The ill parents stated that they gained a sense of security and were less worried about the future. Significance of results This study adds to the evidence that FTI may be a useful intervention for families with dependent children and an ill parent in a palliative care setting. This trial is registered at ClinicalTrials.gov Identifier NCT03119545.


2020 ◽  
pp. 1-7 ◽  
Author(s):  
Anette Alvariza ◽  
Li Jalmsell ◽  
Rakel Eklund ◽  
Malin Lövgren ◽  
Ulrika Kreicbergs

Abstract Objective One of the main goals of the Family Talk Intervention (FTI) is to increase communication within families with dependent children about illness-related consequences and to support parenting. FTI is family-centered and includes six manual-based meetings led by two interventionists. This study aims to evaluate the feasibility of the FTI in terms of acceptability from the perspective of parents in families with dependent children where one parent receives specialized palliative home care. Method A descriptive design employing mixed methods was used to evaluate the FTI in specialized palliative home care. In total, 29 parents participated in interviews and responded to a questionnaire following FTI. Qualitative content analysis and descriptive statistics were used for analyses. Results FTI responded to both the ill parent's and the healthy co-parent's expectations, and they recommended FTI to other families. Parents found the design of FTI to be well-structured and flexible according to their families’ needs. Many parents reported a wish for additional meetings and would have wanted FTI to start earlier in the disease trajectory. Parents also would have wished for a more thorough briefing with the interventionists to prepare before the start. The importance of the interventionists was acknowledged by the parents; their professional competence, engagement, and support were vital for finding ways to open communication within the family. The FTI meetings provided them with a setting to share thoughts and views. Parents clearly expressed that they would never have shared thoughts and feelings in a similar way without the meetings. Significance of results According to parents, FTI was found acceptable in a palliative home care context with the potential to add valuable support for families with minor children when a parent is suffering from a life-threatening illness.


1966 ◽  
Vol 11 (4) ◽  
pp. 314-323
Author(s):  
H. Langevin ◽  
J. N. Fortin ◽  
F. Léonard

This paper describes the activities of a home treatment program for psychiatric patients. In 1962 the Canadian Mental Health Association, Quebec Division, awarded a grant to the Notre-Dame Hospital for the establishment of a Home-Care Program and Emergency Psychiatric Service. To demonstrate the type of patient admitted to this newly established service and the results obtained, special records were compiled for 69 patients for the purpose of a study. All patients were admitted at random to the investigation and all received thioridazine, the drug employed by the service because of its reported margin of safety. Diagnostically, the patient population can be grouped into four separate categories: a) Schizophrenic reaction 38 patients b) Depressive reaction 20 patients c) Anxiety reaction 6 patients d) Character disorder 5 patients Total 69 patients The dosage range of thioridazine varied from 10 mg. t.i.d. to 200 mg. t.i.d. depending upon the severity of the symptoms with a mean average of 25 to 50 mg. A beneficial effect was noted in 74% of the patients. The data presented describing the cooperation of the patients and their environment towards treatment of the psychiatric disorder, clearly demonstrate that the treatment prescribed had to overcome many difficulties. Most patients were unco-operative and there was also strong resistance towards the treatment of the patient by his family. In conclusion, the therapeutic results are gratifying. This is especially so in view of the majority of the patients who were not co-operative or severely ill who would never have obtained a psychiatric consultation were it not for the Home-Care Psychiatric Service. The lack of serious side effects and therapeutic effectiveness of thioridazine observed during this trial contributed to the improvement of the patient population. Many questions should be raised concerning home treatment or house call by psychiatrists. The experience of the service can be termed a research experiment by only the broadest interpretation. The most important appear evident in our concluding observations: 1) Home treatment could reach a large segment of people who otherwise would not receive treatment and are in need of it. 2) The co-operation and motivation of the patient is not necessarily a pre-requisite for treatment as it was previously believed. 3) The use of auxiliary services, social agencies and drug therapy facilitate the treatment. 4) A better understanding of the institution—the family, will be required in the near future. The meaning of the coined words ‘family crisis’ is still esoteric and should be defined according to scientific measurable standards. The psychiatrist, in order to proceed with the treatment depends on the family and must allow the family to depend on him, with the implication that he must do certain things according to the way of the family. An acute situation resulting either in a psychotic breakdown and/or emergency call must be understood as a communication between the patient and the ‘milieu’. The crisis provoked is a message of the distress of the patient, which means despite the negativistic facade that the patient wished to be helped. It has also been our experience that the family resorts to the service with the concealed desire to have a witness to their situation. The psychiatrist then becomes the ‘pacifier’ by only his presence, whether he takes a direct active role or not. Repeated crises have appeared to us as a means to solve difficult problems in front of a passive outsider — thus the family dynamics were operative towards seeking a solution and integrative measures. In other words, if an individual demands attention the same can be said for a family, which explains many additional visits required in certain cases. 5) The role and change in the therapist as a result of the home visit will ensue. It is quite clear that the fact of the role reversal, that the patient is the host and the psychiatrist the visitor, unlike the situation in the office, places the onus and burden on the psychiatrist. The use of manipulation which then becomes a social prescription can be attained if only communication is established between the family and the psychiatrist. In many instances various members of the team are better suited for the initial visit at the onset of treatment be it a nurse, a social worker, or a doctor. The establishment of a therapeutic alliance should be the major objective but additional knowledge must be gained before principles are clearly outlined in this area.


1993 ◽  
Vol 32 (12) ◽  
pp. 706-713 ◽  
Author(s):  
M. Canlas-Yamsuan ◽  
I. Sanchez ◽  
M. Kesselman ◽  
V. Chernick

PEDIATRICS ◽  
1983 ◽  
Vol 71 (5) ◽  
pp. 743-747
Author(s):  
Raymond K. Mulhern ◽  
Mary E. Lauer ◽  
Raymond G. Hoffmann

Twenty-four families who had participated in a Home Care Program for children terminally ill with cancer and 13 families of similar children who had died in the hospital completed inventories on parent and sibling personality as well as family functioning three to 29 months after the child's death. Parents of patients who received terminal care in the hospital were more anxious, depressed, and defensive and had greater tendencies toward somatic and interpersonal problems than parents of patients in the Home Care Program. Siblings of patients who received terminal care in the hospital were more emotionally inhibited, withdrawn, and fearful than their counterparts in the Home Care Program. Although some group differences in parental personality may have antedated terminal care, these results confirm parental reports of more adequate family adjustment following participation in a structured Home Care Program.


2013 ◽  
Author(s):  
Els Rutten ◽  
Dashty Husein ◽  
Pascale Abrams ◽  
Linsey Winne ◽  
Els Feyen ◽  
...  

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Yu Hyeon Choi ◽  
Min Sun Kim ◽  
Cho Hee Kim ◽  
In Gyu Song ◽  
June Dong Park ◽  
...  

Abstract Background The number of technology-dependent children (TDC) is increasing in South Korea, but available healthcare services after their discharge are poor. This study aimed to examine how TDC and caregivers live at home and identify their difficulties and needs regarding home care with few services to support them. Methods This cross-sectional study was conducted in a tertiary hospital for children in South Korea. A self-reported questionnaire was completed by primary caregivers of TDC who were younger than 19 years and had been dependent on medical devices for more than 3 months. Technologies included home mechanical ventilation, oxygen supplementation, suction equipment, enteral feeding tube, and home total parenteral nutrition. Patterns of healthcare use and home care of TDC and caregivers’ perception toward child were assessed. Results A total of 74 primary caregivers of TDC completed a self-reported questionnaire. About 60% children were aged under 5 years. There were 31.1% children who required both respiratory and nutritional support. On average, caregivers took care of a child for 14.4 (±6.1) hours, slept for 5.6 (±1.6) hours, and spent 2.4 h per day on personal activities. Children used hospital services for 41.3 (±45.6) days in 6 months, and most (78.1%) were transported through private car/ambulance. Participants (75.6%) reported taking more than an hour to get to the hospital. More than 80% of caregivers responded that child care is physically very burdensome. The only statistically significant relationships was between economic status and financial burden (p = 0.026). Conclusions Caregivers of TDC reported having significant time pressure regarding childcare-related tasks, insufficient time for personal activities, and inefficient hospital use because of inadequate medical services to support them in South Korea. Thus, it is necessary to support caregivers and develop a home care model based on current medical environment.


1951 ◽  
Vol 51 (4) ◽  
pp. 233 ◽  
Author(s):  
John D. Thompson

2018 ◽  
Vol 19 (5) ◽  
pp. 519-536 ◽  
Author(s):  
Shona Minson

This article draws upon research with children whose mothers were imprisoned in England and Wales, to investigate the impacts of maternal imprisonment on dependent children. The research directly engaged with children, in accordance with Article 12 of the UNCRC 1989, and is set within an examination of the differentiated treatment in the family and criminal courts of England and Wales of children facing state initiated separation from a parent. The article explores children’s ‘confounding grief’ and contends that this grief originates from social processes, experienced as a consequence of maternal imprisonment. ‘Secondary prisonization’ is characterized by changes in home and caregiver and the regulation of the mother and child relationship. ‘Secondary stigmatization’ occurs when children are stigmatized by virtue of their relationship with their mother. These harms to children call into question the state’s fulfilment of its duty to protect children under Article 2 of the UNCRC 1989.


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