Family climate and Health in families where a parent has deafblindness

• Introduction: Research has identified that deafblindness implies challenges in daily life. Isolation, depression and poor health are some of the consequences that has been described in research. From a system theory perspective it is reasonable to assume that the entire family could be affected when a parent has deafblindness. However studies focusing on parenting and family life in this context are sparse. Aim: To describe the family situation, family climate, health and wellbeing, from the different perspectives in families where a parent has deafblindness. Methods: Data were collected by means of questionnaires and semi structured interviews. Family members from 16 families participated (14 persons with deafblindness, 6 partners and 18 children). The family members were asked to fill out questionnaires about family climate, health related quality of life and sense of coherence. In the interviews the participants were asked about their experiences of living in a family where a parent has deafblindness, parenting, roles and need for support. Results: The results are preliminary at this stage, but the parents with deafblindness described the parentship and family life as somewhat conditioned. They wanted to take on a parental responsibility, but sometimes they felt forced to abdicate from this responsibility. An adapted environment facilitated, like support from a guide or a professional interpreter with personal knowledge of the family. The partners experienced that the consequences of the deafblindness ruled the family. They expressed a need for rest from responsibility, and a need for support in daily life as a couple, to be able to handle their family life. On group level, the family climate pattern was uniform; the parents with deafblindness, partners and children scored a high level of family closeness. The results from the questionnaires in terms of health related quality of life and sense of coherence indicated an increased risk of poor health related quality of life, and none of the participants qualified to a high sense of coherence. Discussion: At the presentation the experiences of consequences of deafblindness as it affects the entire family will be discussed. Further the risk of poor health related quality of life will be addressed. In order to maintain a healthy family life, the adults empathized a need for support to the individual family members, and for the whole family. The findings can serve as a base for the development of family support interventions needed for families where a parent has deafblindness. Implications: This study has implications for the possibility to develop interventions directed to all members in families where a parent has deafblindness based on what their experiences and needs are. This study provides knowledge both to research and to the professional field about family life when a parent has deafblindness.

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences (hsv//eng)

Nyckelord

Handikappvetenskap

Disability Science

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