Den ombokade resan : att leva som familj med kronisk sjukdom

Aim: The overall aim was to generate deepened knowledge and understanding about families’ experiences of living as a family with chronic illness. The four studies aimed to: illuminate the meaning of living as a family in the midst of chronic illness (I), illuminate illness beliefs in those families (II), illuminate the meaning of place for family well-being (III) and describe the experiences of encounters with health care in families living with chronic illness (IV). Methods: All studies had qualitative designs and a Family Systems Nursing perspective. Data was collected through family interviews with families where an adult family member had lived with chronic illness for more than two years. The used analyses were phenomenological hermeneutic (I,III), hermeneutic (II) and content analysis (IV). Results: Living as a family with chronic illness was a continuously ongoing process where families co-created a context for living with illness and alternative ways for everyday life (I). Core and secondary beliefs within and across families about illness, family, and health care were revealed and showed for how families responded to and managed situations due to illness (II). Further, the meaning of place for family well-being was described as “a shared respite”, i.e. a place for relief, reflection and re-creation. It seemed to be important for families to be in secure places to enhance well-being (III). Living with chronic illness also includes frequent encounters with health care professionals and having an accompanying member constituted a great power. It helped families to get opportunities to collaborate, and receiving confirmation in the encounters (IV). Conclusions: Living as a family with chronic illness is a continuously ongoing process where family members constitute support for each other. Families have a common desire to handle challenges and changes due to illness and to co-create new patterns for everyday living. Therefore, if nurses adopt a Family Nursing Perspective and involve families in health care, families’ strengths and resources can be facilitated. Then, family well-being can be strengthened