scholarly journals Children’s experiences of the family talk intervention when a parent is cared for in palliative home care—A feasibility study

Death Studies ◽  
2020 ◽  
pp. 1-12
Author(s):  
Rakel Eklund ◽  
Li Jalmsell ◽  
Ulrika Kreicbergs ◽  
Anette Alvariza ◽  
Malin Lövgren
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.


2020 ◽  
Vol 26 (2) ◽  
pp. 102-110 ◽  
Author(s):  
Rakel Eklund ◽  
Ulrika Kreicbergs ◽  
Anette Alvariza ◽  
Malin Lövgren

Children’s experiences of information and family communication when a parent has a life-threatening illness have been sparsely studied, though such information is important for the child’s wellbeing. The aim of this study was to explore children’s reports of illness-related information and family communication when living with a parent with a life-threatening illness. Forty-eight children, aged 7 to 19 years, were recruited from four specialized palliative home care units in Stockholm, Sweden. All but one child reported that someone had told them about the parent’s life-threatening illness; however, two thirds wanted more information. A quarter of the teenagers reported that they had questions about the illness that they did not dare to ask. Half of the children, aged 8 to 12, reported that they felt partially or completely unable to talk about how they felt or show their feelings to someone in the family. Interventions are needed that promote greater family communication and family–professional communication.


PLoS ONE ◽  
2021 ◽  
Vol 16 (9) ◽  
pp. e0257274
Author(s):  
Maria Liljeroos ◽  
Per Milberg ◽  
Barbro Krevers ◽  
Anna Milberg

Objectives To examine similarities and dissimilarities in patient and family caregiver dyads in their experience of stress, support, and sense of security. Methods 144 patients and their family caregivers participated. Patients were admitted to six Swedish specialist palliative home care units and diagnosed with a non-curable disease with an expected short survival. We analysed similarity patterns of answers within dyads (correlations) as well as dissimilarities, expressed as the difference between within-dyad responses. The latter were subjected to a model-building procedure using GLM, with 13 sociodemographic and clinical characteristics as independent variables. Results Within dyads, patients and family caregivers scored similar in their perception of support and sense of security with care. There was also dissimilarity within dyad responses in their perception of stress and support that could be attributed to sociodemographic or clinical characteristics. When patients scored higher levels of stress than family caregivers, the family caregiver was more likely to be male. Also family caregiver attachment style (attachment anxiety), patient age and the relationship of the family caregiver to the patient explained dissimilarities within the dyads. Conclusions Patients and family caregivers within the dyads often, but not always, had similar scores. We suggest that it is important that the healthcare staff identify situations in which perceptions within the dyads regarding stress and perception of support differ, such that they can recognise patients’ and family caregivers’ unique needs in different situations, to be able to provide adequate support and facilitate dyadic coping.


1970 ◽  
Vol 5 (1) ◽  
Author(s):  
Linlin Lindayani ◽  
Nenden Nur Asriyani Maryam

Asuhan palitif untuk pasien dengan HIV/AIDS merupakan elemen inti dari asuhan pasien dengan HIV/AIDS. Asuhan paliatif yang berbasis home care saat ini menjadi elemen penting yang digunakan di berbagainegara. Akan tetapi, tidak ada studi atau tinjauan sebelumnya yang menganalisis efektifitas dari asuhanpaliatif yang berbasis home care pada pasien dengan HIV/AIDS. Tujuan dari tinjauan sistematik ini adalahuntuk mengevaluasi efektivitas Palliative Home Care untuk pasien dengan HIV/AIDS terhadap nyeri,pengendalian gejala, meningkatkan kualitas hidup, meningkatkan kepuasan asuhan, dan efektivitas biaya.Pencarian awal terbatas dilakukan di MEDLINE dan CINAHL. Kedua database tersebut dipilih denganpertimbangan bahwa keduanya merupakan database terbesar di bidang kesehatan dan kedokteran. Kemudiastrategi pencarian lainnya dilakukan pada database lain meliputi: Cochrane Library, UpToDate, Ovid, AIDSCare, Journal of Palliative Care, dan Journal of Palliative Medicine. Studi yang diterbitkan dalam Bahasa Inggrisdan tahun 2000-2016 dipertimbangkan untuk dimasukkan dalam tinjauan ini. Data diekstrak oleh penulis dandiringkas menggunakan alat ekstraksi data dari JBI (Joanna Briggs Institute). Kami menemukan 4 studi yangmasuk kedalam kriteria tinjauan kami, satu studi randomizes control trial dan tiga studi prospectively control.Hasil dari tinjauan ini menunjukkan bahwa Palliative Home Care terbukti efektif dalam mengontol nyeridan gejala-gelaja lain, mempertahankan dan meningkatkan kualitas hidup pasien, tingginya kepuasan daripasien dan kelurga terhadap asuhan Palliative Home Care berkisar 93% - 96% dan lebih cost-effectivenessdibandingkan dengan Hospital-Based Palliative Care. Dengan demikian, penting untuk mengembangkanPalliative Home Care untuk pasien dengan HIV/AIDS terutama untuk negara dengan sumber daya yang terbatas.


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