Bergersen Emily, Olsson Cecilia, Larsson Maria, Kreicbergs Ulrika, Lövgren Malin
Karlstad University, Universitetsgatan 2, Karlstad, 651 88, Sweden.
Inland Norway University of Applied Sciences, Box 400, Elverum, 2418, Norway.
BMC Palliat Care. 2024 Dec 12;23(1):281. doi: 10.1186/s12904-024-01611-3.
The psychosocial needs of families in which a parent is affected by life-threatening illness and has dependent children are extensive. However, few family-based interventions have been scientifically evaluated and even fewer have been evaluated long term. Therefore, the specific objectives of this study were to describe the parents' perceptions of the timing and length of FTI in relation to the illness trajectory, to explore what activities learnt by the FTI still were practiced in the long-term and what content of FTI was perceived as most valuable to cope in the long-term.
This qualitative study involved a follow-up with nine parents (ill parents, n = 3, coparents, n = 6) 4 to 5 years after participating in FTI, where one parent was cared for in specialised palliative homecare. FTI is a psychosocial family-based intervention that consists of 6-11 manual-based meetings with the families led by an educated interventionist. FTI focuses on facilitating family communication about illness-related subjects, supporting parenting, and making the children's needs visible. The data collection consisted of interviews and was analysed according to the phenomenographic method, focused on variations in perceptions.
The parents perceived FTI as a way to alleviate feelings of loneliness, and some families were still using the obtained communication tools at the time of the interview. They also perceived that FTI contributed to the children being more open about their own feelings and thoughts. However, the parents wanted extended support after FTI ended based on their individual needs, for example, during and after bereavement, deteriorated health or occasional challenges faced by children in crisis. The parents perceived the peer support gained in conjunction with FTI as important social and emotional support both during and after the intervention. The interventionists were perceived as professional persons who promoted open and honest communication during FTI.
FTI is found to promote family communication both in a short- and long-term perspectives according to parents. They also found FTI useful in reducing their feelings of loneliness. Support over a longer period of time is desired and extra FTI meetings may strengthen the family as a whole in parallel with additional support for parents and children during the illness trajectory and in bereavement. They received support in dealing with strong and difficult emotions and learned conversational techniques that they still used at the time of the interview, indicating that the lessons learnt was integrated and valuable many years after the last FTI meeting.
父母患有危及生命的疾病且有未成年子女的家庭，其心理社会需求广泛。然而，很少有基于家庭的干预措施经过科学评估，长期评估的更少。因此，本研究的具体目标是描述父母对家庭治疗干预（FTI）的时机和时长与疾病轨迹关系的看法，探讨FTI中学到的哪些活动在长期仍在实践，以及FTI的哪些内容被认为对长期应对最有价值。
这项定性研究在9位父母（患病父母，n = 3；共同父母，n = 6）参与FTI 4至5年后进行随访，其中一位父母在专门的姑息家庭护理中接受照料。FTI是一种基于家庭的心理社会干预措施，由一名受过培训的干预人员与家庭进行6至11次基于手册的会面组成。FTI侧重于促进家庭就与疾病相关的话题进行沟通，支持养育子女，并关注孩子的需求。数据收集通过访谈进行，并根据现象学方法进行分析，重点关注看法的差异。
父母认为FTI是减轻孤独感的一种方式，一些家庭在访谈时仍在使用所获得的沟通工具。他们还认为FTI有助于孩子更开放地表达自己的感受和想法。然而，父母希望在FTI结束后根据个人需求获得更多支持，例如在丧亲期间、健康状况恶化或孩子在危机中偶尔面临挑战时。父母认为在FTI期间获得的同伴支持在干预期间和之后都是重要的社会和情感支持。干预人员被视为在FTI期间促进开放和坦诚沟通的专业人员。
根据父母的说法，FTI在短期和长期都能促进家庭沟通。他们还发现FTI有助于减轻孤独感。希望获得更长时间的支持，额外的FTI会面可能会加强整个家庭，同时在疾病轨迹和丧亲期间为父母和孩子提供额外支持。他们在处理强烈和困难的情绪方面得到了支持，并学到了在访谈时仍在使用的对话技巧，这表明在最后一次FTI会面多年后学到的经验教训仍然是综合且有价值的。
